Saturday, September 24, 2005
Made it through the storm
This is Christian ... just talked to Andy and they are all fine. He's heading back to his home from Adrienne's mom's house. They had lost power there for about four hours this morning. Andy said he had called a neighbor and they never lost power at his house. He says traffic is heavy but moving on the beltway.
Wednesday, September 07, 2005
A birthday!
Hello all... It has actually been a whole year since Olivia came into this world, and (to quote Jerry Garcia) "what a long strange trip its been" I some times feel like it has been several years and other times like it was just the other day...I don't miss the hospital, but I miss the encouragement of many of the doctors and the nurses. Olivia has come such a LONG way in a year, that it really nothing short of a miracle. If she had been born 30 years ago, I am not sure if she would have survived. She barely survived the first 4 months. I am not sure if I ever wrote about how scary things got last December, but she was revived with chest compressions (CPR, basically) a few times, and that her lungs were so bad then that the doctors could barely bring themselves to show us the X-ray. They did reluctantly about a month later, when Olivia was breathing on her own. I must say that we could not have done it without our huge extended cast of characters (and oh, what characters they are!!). We have Susan and Kyle; Dave and Barbara; Tim and Sharon; Susie, Ingird and the whole 4th grade Sunday School team at CUMC; ALL the other Schultz's (Steven, who created a link for us to Richard Barrette, who has had incredibly valuable advice and uplifting messages) especially my brother (Chas) and sister (Sarah, aka Sally) who both called many times over to see how things were going. My inner circle of coworkers (those who actually ask how Olivia is doing on a regular basis) I am eternally grateful to my best friend on this Earth (after Adrienne) Crit, who has allowed me to use up his bandwidth for and indefinite amount of time so that you all could read my ramblings. Everybody wanted to help somehow-someway-anyway-anyhow... and with all the help coming usually just in the nick of time, we have made this far, only the rest of our lives to go!
So, we celebrate a year of LIFE for Olivia. She is a fighter indeed. She could have given up at any time, but she is tenacious and has always made sure that we know it. She has adapted us to her needs, that much is certain. We have struggled in many ways, we doubted the intentions of those around us, only to have the fears quashed and our faith reconfirmed. The world has gone through some very tumultuous times in the past year. Death and destruction are running rampant in all 4 corners of the globe, and yet we continue on. The world has shown its true colors in much the same way that those involved with our new world of Olivia and CdLS have shown their true colors. Those who are truly good people stepped up and helped out. We have fought doctors (not a great deal, but there has been some head-butting) my insurance company (if you have ever seen the movie The Incredibles, Bob Parr works for an insurance company whose major objective is to deny all claims and make the shareholders happy; that is what it feels like for many families I am sure) and each other. Luckily, we are able to overcome our internal squabbles and move forward.
Sara and Andy have been unbelievably resilient and patient, even if I have not always been patient with them. It is strange to think that healthy typical children would know about feeding tubes and genetic anomalies and all the issues in between. Andy is always one to ask if other babies that he sees might have a feeding tube or need oxygen or spend their 1st 4 months of life mostly in the hospital. I have to have faith that their ability to cope and absorb the situation that we did not expect and did not know anything about comes from being surrounded by "steadfast love" that knows no bounds of time or space....
Okay, now that I have given my acceptance speech, I will give you a current update of sorts...( I want to thank my agent, Bernie, for believing in this project, and my acting coach who taught me how to use my instrument, and all the people at the studio, I couldn't have done it without you!! you know who you are) ahhh, yeah...okay for real now...
School has started and another season of soccer for Sara (I am coaching her team of 17 girls, don't ask me why) and Andy is still in preschool for this year (late Sept Birthday, he missed the cutoff for Kindergarten) and Olivia has been going to some Physical Therapy (PT) and has just started some Occupational Therapy (OT) too. Her PT is for muscle strengthening. We have learned the various exercises and positions to do with her to make her use her arms more and to build upper body strength and over all balance. She can pretty much sit up on her own for a minute or two. We keep her from just tipping over more due to the Mic-Key button and her severe reflux than from worry about her getting hurt falling over. If she leans on the Mic-Key button sight (where her G-tube connects for feeding) too much, it gets irritated and the skin breaks down around it. If she is shaken up too much (tipping over and sloshing around from being picked up and carried and moved around) she will have a bout of reflux and it is hard on her. I am sure it is painful and rips up her esophagus, along with the way in which she tightens up and is stiff. She appears to hold her breath and try to not spit up, which causes some junk to come out her nose, and then is also painful.
Her OT will be exercises around her mouth and facial muscles to improve her ability to use her tongue and eventually drink fluids and eat actual food. She has come a long way with regards to being orally defensive though. She likes to put some chew rings/toys in her mouth even is they do make her gag and maybe spit up. That is a good sign if she will continue to do things like that and not shut down orally.
Olivia loves to laugh and be tickled too. Her laugh is a rather hoarse grunting sound, but is obviously laughter when she combines it with her Betty Boop eyes. When she is really laughing a lot, her little "hoo" sounds and grunting are like a kid playing machine gun, little sharp bursts of the sounds. I can tickle her with my face (like blowing raspberries on her chin) and with my fingers if she is in a real receptive mood. Andy will play peek-a-boo with her and get her laughing louder than anyone else can. She does hear much better than she used to, and she likes TV a lot too. (I think she has a thing for college football, especially if LSU or Michigan is playing; smart girl).
She does have her moments of behavior that is unique to the syndrome I suppose. We have some nights where she just isn't tired and won't go to sleep. Unlike typical children and babies, we can't just leave her alone with the knowledge that she will just fall asleep while crying. When she gets on a crying binge, she generates more mucous and more gas (the mucous is hard to digest and the gas can cause her to spit up). In general, it is a long slow process to draw the mucous out of her stomach via the feeding the tube, and get her calm enough to relax and sleep. Even if she doesn't get all worked up crying, sometimes she just won't go to sleep easily. If left alone, she would get herself turned around and put too much strain on the Mic-Key button, causing to bleed and become more irritated, or it will disconnect from the feeding tube and formula from the pump and from her stomach will leak all over (yeah, that is a real fun one to clean up in the middle of the night).
So, she keeps us on our toes and makes sure we don't ignore her signs of distress that might be the beginnings of a reflux episode. We will keep at it, and make sure she is safe and dry (thank goodness that we do have a clean and dry place for her) and we will shower her with love and affection and we will surely make it through another day and another week and on to the next holiday and into the upcoming years. Thanks for all your support for this past year, and you know we will be counting on your continued support into the future. Be sure to keep Roger and Sally in your thoughts and prayers (and send him a card for his B-day on Sep 19th), and know that their own ordeal is unique and universal like ours. There are many others suffering too, but when you are in the thick of it in the wee hours of the night, you are fully alone and scared. Daylight does break as always, and the sun washes some of the despair away, but it lingers on...so, call e-mail, write and just say hello. We won't bite (and if we do, we usually don't draw blood), we are just tired and a bit dazed, and we welcome and need the contact.
be seeing you, Andrew
So, we celebrate a year of LIFE for Olivia. She is a fighter indeed. She could have given up at any time, but she is tenacious and has always made sure that we know it. She has adapted us to her needs, that much is certain. We have struggled in many ways, we doubted the intentions of those around us, only to have the fears quashed and our faith reconfirmed. The world has gone through some very tumultuous times in the past year. Death and destruction are running rampant in all 4 corners of the globe, and yet we continue on. The world has shown its true colors in much the same way that those involved with our new world of Olivia and CdLS have shown their true colors. Those who are truly good people stepped up and helped out. We have fought doctors (not a great deal, but there has been some head-butting) my insurance company (if you have ever seen the movie The Incredibles, Bob Parr works for an insurance company whose major objective is to deny all claims and make the shareholders happy; that is what it feels like for many families I am sure) and each other. Luckily, we are able to overcome our internal squabbles and move forward.
Sara and Andy have been unbelievably resilient and patient, even if I have not always been patient with them. It is strange to think that healthy typical children would know about feeding tubes and genetic anomalies and all the issues in between. Andy is always one to ask if other babies that he sees might have a feeding tube or need oxygen or spend their 1st 4 months of life mostly in the hospital. I have to have faith that their ability to cope and absorb the situation that we did not expect and did not know anything about comes from being surrounded by "steadfast love" that knows no bounds of time or space....
Okay, now that I have given my acceptance speech, I will give you a current update of sorts...( I want to thank my agent, Bernie, for believing in this project, and my acting coach who taught me how to use my instrument, and all the people at the studio, I couldn't have done it without you!! you know who you are) ahhh, yeah...okay for real now...
School has started and another season of soccer for Sara (I am coaching her team of 17 girls, don't ask me why) and Andy is still in preschool for this year (late Sept Birthday, he missed the cutoff for Kindergarten) and Olivia has been going to some Physical Therapy (PT) and has just started some Occupational Therapy (OT) too. Her PT is for muscle strengthening. We have learned the various exercises and positions to do with her to make her use her arms more and to build upper body strength and over all balance. She can pretty much sit up on her own for a minute or two. We keep her from just tipping over more due to the Mic-Key button and her severe reflux than from worry about her getting hurt falling over. If she leans on the Mic-Key button sight (where her G-tube connects for feeding) too much, it gets irritated and the skin breaks down around it. If she is shaken up too much (tipping over and sloshing around from being picked up and carried and moved around) she will have a bout of reflux and it is hard on her. I am sure it is painful and rips up her esophagus, along with the way in which she tightens up and is stiff. She appears to hold her breath and try to not spit up, which causes some junk to come out her nose, and then is also painful.
Her OT will be exercises around her mouth and facial muscles to improve her ability to use her tongue and eventually drink fluids and eat actual food. She has come a long way with regards to being orally defensive though. She likes to put some chew rings/toys in her mouth even is they do make her gag and maybe spit up. That is a good sign if she will continue to do things like that and not shut down orally.
Olivia loves to laugh and be tickled too. Her laugh is a rather hoarse grunting sound, but is obviously laughter when she combines it with her Betty Boop eyes. When she is really laughing a lot, her little "hoo" sounds and grunting are like a kid playing machine gun, little sharp bursts of the sounds. I can tickle her with my face (like blowing raspberries on her chin) and with my fingers if she is in a real receptive mood. Andy will play peek-a-boo with her and get her laughing louder than anyone else can. She does hear much better than she used to, and she likes TV a lot too. (I think she has a thing for college football, especially if LSU or Michigan is playing; smart girl).
She does have her moments of behavior that is unique to the syndrome I suppose. We have some nights where she just isn't tired and won't go to sleep. Unlike typical children and babies, we can't just leave her alone with the knowledge that she will just fall asleep while crying. When she gets on a crying binge, she generates more mucous and more gas (the mucous is hard to digest and the gas can cause her to spit up). In general, it is a long slow process to draw the mucous out of her stomach via the feeding the tube, and get her calm enough to relax and sleep. Even if she doesn't get all worked up crying, sometimes she just won't go to sleep easily. If left alone, she would get herself turned around and put too much strain on the Mic-Key button, causing to bleed and become more irritated, or it will disconnect from the feeding tube and formula from the pump and from her stomach will leak all over (yeah, that is a real fun one to clean up in the middle of the night).
So, she keeps us on our toes and makes sure we don't ignore her signs of distress that might be the beginnings of a reflux episode. We will keep at it, and make sure she is safe and dry (thank goodness that we do have a clean and dry place for her) and we will shower her with love and affection and we will surely make it through another day and another week and on to the next holiday and into the upcoming years. Thanks for all your support for this past year, and you know we will be counting on your continued support into the future. Be sure to keep Roger and Sally in your thoughts and prayers (and send him a card for his B-day on Sep 19th), and know that their own ordeal is unique and universal like ours. There are many others suffering too, but when you are in the thick of it in the wee hours of the night, you are fully alone and scared. Daylight does break as always, and the sun washes some of the despair away, but it lingers on...so, call e-mail, write and just say hello. We won't bite (and if we do, we usually don't draw blood), we are just tired and a bit dazed, and we welcome and need the contact.
be seeing you, Andrew
Thursday, August 04, 2005
The summer routine
I think the last update was over 2 months ago. Since then, we gradually became familiar with our summer plan. Our summer plan consisted of sleeping a little bit more and generally not having to get the kids up early (with a few exceptions). Even Olivia settled into a pattern of sleeping until almost 9 am or at least until 8:30 typically. She saw both her cardiologist and her pulmonary doctor. As far as her heart is concerned, her VSD is getting smaller and the PFO is pretty much a non issue right now. But she has a pulmonary valve stenosis. Right now, it is a good thing because it has been helping keep too much blood from going to her lungs. So, in tandem with the VSD this heart issue is okay with us for now. She has also been taken off all other meds for heart and lung issues. Olivia's lungs are much better and are not real worrisome to anyone at this time. She won't have to see our cardiologist for another year and the Pulmonologist in October sometime.
These two visits back in early July or late June brought us this welcome news along with the customary pat on the back for Adrienne for doing so well with Olivia. It is nice to get encouraging words from the medical community, especially since they can't really help out in any other ways besides signing documents that we can pester the insurance company with.
Sara and I survived the swim team experience this summer (it ended right around her birthday). Andy hung out with us at the home meets for a couple of hours, before getting too hot and having mom come get him. I pretty much had never really gotten fully immersed in the process until this summer. It is WAY easier than the Softball All-Star seasons of the past. Yeah, it is hot and kind of boring, but not nearly as grueling. Sara also played with some girls on an indoor soccer team, which Adrienne and I took turns going to see (Andy also took turns going to games).
Olivia, in the meantime had several doctor visits. She has seen an ENT a few times. The last time, it was determined that she had quite a bit of fluid build up in her ears and also they would get partially clogged with wax. This was a determining factor in whether or not she can actually hear. She then had an ABR test which determined, roughly, since they did not do the full test, which requires sedating her, that her hearing is poor due to the minute structure of her inner ear bones along with the fluid and wax. It is NOT neurological at all. That is a very good thing, because she will be able to hear just fine as she gets older. We still were pondering some sort of hearing aids for her. They are two things: not cheap and not covered by insurance. This means we did not run out and have her fitted.
She also began going to some PT (physical therapy) every other week at a PTC (pediatric therapy center) a few miles north of us on US 59. That is also not cheap and this particular place is also not covered by our insurance. They will cover some place in Pearland. It looks close enough on a map to someone who has never tried to drive across the Houston-Metro area with a baby on a feeding tube with reflux. For that person (Adrienne) it is VERY far away. Especially by herself. So, we are petitioning the insurance company to cover the closer place. Then, she could also get OT (occupational therapy) and eventually Speech Therapy, which could start sooner than we originally thought.
We have learned some good stuff from PT and so has Olivia. She has begun to roll over a little bit and even a modified crawl (with mom holding quite a bit of her weight) We have just mostly to get her out of her chair, which she gets really bored of now very easily and she likes to be held and to sit with someone on the floor playing (she doesn't really sit up unassisted, but she does love to be held and have her tummy time). She is very ticklish and loves to have raspberries blown on her legs and neck. She will do her version of laughing with a sort of hoarse "hoo" sound. She will imitate me if I "hoo" back to her and tickle her.
She has grown a bit since the last 2 months. She weighed 12 lbs a couple of weeks ago. She also has much more hair on her head. So, the CdLS life for us and for her is pretty much just keeping up with feedings and doing plenty of venting and mixing it up with some tummy time and some other holds to help her gain more back strength and upper body strength.
Here is a typical day with our atypical Olivia. (this will change a bit when school starts for Sara and preschool starts for Andy) I am up around 7am to let the dog out for a bit and then take a shower. When I am ready to leave for work around 7:30 I wake Adrienne up, if she is not already awake. She can do her morning routine for herself (dressing, putting contacts in etc) before waking the kids and before Olivia wakes up. She wakes up sometime around 8:30 or so, and will need a diaper change and some cleaning of the Mic-key button (where the feeding tube connects) sight. It is not fully leakproof and gets kind of yucky over time. She will also probably need to be vented to release the gas pressure in her tummy. She also produces copious quantities of mucous which is an ongoing battle when it comes to doing anything with her; gas and mucous, we could hold a clinic on how to remove it and how to recognize the symptoms of it in her behavior. Mom can usually get the other kids breakfast by 9:30 or so, and also clean up the kitchen and make the beds and deal with the other issues that come up with 2 kids in the house who don't always agree on everything. (nice positive spin on fighting) Olivia doesn't usually take any real naps ALL DAY LONG. So, when she crashes for any amount of time, it is a race to do some laundry or some other chore. (Adrienne does this fantastically, by the way) Somehow, the kids get lunch too. Sometime between 11:30 am and 1 pm the kids get lunch. sometimes at lunch, I came home to take them to the library. not very often though. sometimes Grandmamma would come and take them out for a bit too. Usually they would get settled into some TV for the afternoon...Andy gets bored with TV easily (that is a good thing) And then, I would arrive home around 5:00 to 5:30 and great everybody and we have been swimming for about an hour each day before I come inside to make dinner. I try to do this quickly and let mom come down to eat and clean by 7:00 pm or so. Then I get Olivia time. Sometimes she is crashed out, but more frequently, I hang out with her down stairs and check the email (yes, I read all the email, I just don't respond regularly) She will probably need to be vented sometime during this period. Sometimes she has tons of mucous and it is a long and drawn out procedure. This summer we would let the nights get late before bedtime, and I would bath Olivia and mom would bath Andy (Sara of course, takes care of herself) then from sometime between 9:00 and 10:00 it would be bedtime. Olivia typically gets tired and will go to sleep by 10:00 too. Then Adrienne gets to take a shower and we have a chance to talk or watch something on TV.... Adrienne still has to deal with adding formula to the bag 2 times and night and also give her meds at midnight and at 3:00 am. (she has meds at other times throughout the day too) well, that is our day to day schedule...with a few wrinkles here and there of course due to varying attitudes and latitudes... hope all is well out there ... Happy B-day to Elfrieda Schultz (103!!!) and to Dorothy too. Roger, you are in our thoughts daily and I look forward to reading your blog quite often. ... take care, be seeing you, Andrew and family
These two visits back in early July or late June brought us this welcome news along with the customary pat on the back for Adrienne for doing so well with Olivia. It is nice to get encouraging words from the medical community, especially since they can't really help out in any other ways besides signing documents that we can pester the insurance company with.
Sara and I survived the swim team experience this summer (it ended right around her birthday). Andy hung out with us at the home meets for a couple of hours, before getting too hot and having mom come get him. I pretty much had never really gotten fully immersed in the process until this summer. It is WAY easier than the Softball All-Star seasons of the past. Yeah, it is hot and kind of boring, but not nearly as grueling. Sara also played with some girls on an indoor soccer team, which Adrienne and I took turns going to see (Andy also took turns going to games).
Olivia, in the meantime had several doctor visits. She has seen an ENT a few times. The last time, it was determined that she had quite a bit of fluid build up in her ears and also they would get partially clogged with wax. This was a determining factor in whether or not she can actually hear. She then had an ABR test which determined, roughly, since they did not do the full test, which requires sedating her, that her hearing is poor due to the minute structure of her inner ear bones along with the fluid and wax. It is NOT neurological at all. That is a very good thing, because she will be able to hear just fine as she gets older. We still were pondering some sort of hearing aids for her. They are two things: not cheap and not covered by insurance. This means we did not run out and have her fitted.
She also began going to some PT (physical therapy) every other week at a PTC (pediatric therapy center) a few miles north of us on US 59. That is also not cheap and this particular place is also not covered by our insurance. They will cover some place in Pearland. It looks close enough on a map to someone who has never tried to drive across the Houston-Metro area with a baby on a feeding tube with reflux. For that person (Adrienne) it is VERY far away. Especially by herself. So, we are petitioning the insurance company to cover the closer place. Then, she could also get OT (occupational therapy) and eventually Speech Therapy, which could start sooner than we originally thought.
We have learned some good stuff from PT and so has Olivia. She has begun to roll over a little bit and even a modified crawl (with mom holding quite a bit of her weight) We have just mostly to get her out of her chair, which she gets really bored of now very easily and she likes to be held and to sit with someone on the floor playing (she doesn't really sit up unassisted, but she does love to be held and have her tummy time). She is very ticklish and loves to have raspberries blown on her legs and neck. She will do her version of laughing with a sort of hoarse "hoo" sound. She will imitate me if I "hoo" back to her and tickle her.
She has grown a bit since the last 2 months. She weighed 12 lbs a couple of weeks ago. She also has much more hair on her head. So, the CdLS life for us and for her is pretty much just keeping up with feedings and doing plenty of venting and mixing it up with some tummy time and some other holds to help her gain more back strength and upper body strength.
Here is a typical day with our atypical Olivia. (this will change a bit when school starts for Sara and preschool starts for Andy) I am up around 7am to let the dog out for a bit and then take a shower. When I am ready to leave for work around 7:30 I wake Adrienne up, if she is not already awake. She can do her morning routine for herself (dressing, putting contacts in etc) before waking the kids and before Olivia wakes up. She wakes up sometime around 8:30 or so, and will need a diaper change and some cleaning of the Mic-key button (where the feeding tube connects) sight. It is not fully leakproof and gets kind of yucky over time. She will also probably need to be vented to release the gas pressure in her tummy. She also produces copious quantities of mucous which is an ongoing battle when it comes to doing anything with her; gas and mucous, we could hold a clinic on how to remove it and how to recognize the symptoms of it in her behavior. Mom can usually get the other kids breakfast by 9:30 or so, and also clean up the kitchen and make the beds and deal with the other issues that come up with 2 kids in the house who don't always agree on everything. (nice positive spin on fighting) Olivia doesn't usually take any real naps ALL DAY LONG. So, when she crashes for any amount of time, it is a race to do some laundry or some other chore. (Adrienne does this fantastically, by the way) Somehow, the kids get lunch too. Sometime between 11:30 am and 1 pm the kids get lunch. sometimes at lunch, I came home to take them to the library. not very often though. sometimes Grandmamma would come and take them out for a bit too. Usually they would get settled into some TV for the afternoon...Andy gets bored with TV easily (that is a good thing) And then, I would arrive home around 5:00 to 5:30 and great everybody and we have been swimming for about an hour each day before I come inside to make dinner. I try to do this quickly and let mom come down to eat and clean by 7:00 pm or so. Then I get Olivia time. Sometimes she is crashed out, but more frequently, I hang out with her down stairs and check the email (yes, I read all the email, I just don't respond regularly) She will probably need to be vented sometime during this period. Sometimes she has tons of mucous and it is a long and drawn out procedure. This summer we would let the nights get late before bedtime, and I would bath Olivia and mom would bath Andy (Sara of course, takes care of herself) then from sometime between 9:00 and 10:00 it would be bedtime. Olivia typically gets tired and will go to sleep by 10:00 too. Then Adrienne gets to take a shower and we have a chance to talk or watch something on TV.... Adrienne still has to deal with adding formula to the bag 2 times and night and also give her meds at midnight and at 3:00 am. (she has meds at other times throughout the day too) well, that is our day to day schedule...with a few wrinkles here and there of course due to varying attitudes and latitudes... hope all is well out there ... Happy B-day to Elfrieda Schultz (103!!!) and to Dorothy too. Roger, you are in our thoughts daily and I look forward to reading your blog quite often. ... take care, be seeing you, Andrew and family
Monday, May 30, 2005
Yes, a real nap
EDITOR'S NOTE: I was supposed to post this a couple of weeks ago but I got sidetracked, then it got way down on my e-mail list, then ... well, you know. - Christian
Well, it has been 2 months since I have written an update. We have been busy keeping up with our lives so much, that I have been too tired at night to write anything. So, I am going to try writing this at work during lunch. Olivia has been home this whole time, so that is a good thing. She slowly got over most of the horrid congestion that really messed her up back in February and March. We have not used the suction machine in quite a while. I can't remember when the last time was! I don't really know how much she weighs now, but back in April sometime she was at 11 pounds. I think she must be closer to 13 by now, but I really don't know. She definitely has grown a bit in the past two months. We have held steady on the 3 meds for quite a while now. HCT, Zantac and Bethanocal are the only meds she is on currently. Some day she will get off the HCT for sure.
Olivia has decided to try and do things now that she is no longer sick from the crud or anything else. She still produces an enormous amount of mucous, which will usually find a way out of her via vomiting if we don't vent her G-tube and dispose of it ourselves. That is probably the most tiring and time consuming part of our day with Olivia. She is still on continuous feeds at the same rate as before as well. We have tried a few times to increase the rate or the dose, but it does not agree with her at all. This is one of the dilemmas with a CdLS child. They just don't grow very fast, and therefore don't increase their food intake very rapidly.
So, for the past two months we have established a routine around Olivia. I get up around 6:30 am and get Sara up too (on school days) and then I can let mom get to the bathroom before I leave and take Sara to school too. I am able to let the dog out for a bit too and boil water and bring down the nights' supply of bottles to be cleaned along with the med syringes (no needles, they just pop onto a port on the tube out of the G-tube). Adrienne is in full steam ahead mode from when I leave around 7:30 am until I get back. She has been able to get Andy to his preschool on Tuesdays and Thursdays with Olivia in tow. And on Mon, Wed, and Fri she has Andy all day too and then picks Sara up from school. Other than that, and doctor visits, Adrienne is at home with Olivia. When I come home from work, I pay a little visit to Adrienne and Olivia and give mom a break if she needs it, otherwise I start making dinner. We try to eat by 6:30 if possible and then I am on Olivia duty and Adrienne comes downstairs to eat and clean the kitchen and squeeze in any other chores (of which there are always plenty) before it gets too late. She usually puts Andy to bed and tries to spend some time with Sara too, while I give Olivia her bath (which she doesn't really like very much) and get her put to bed. Then, Adrienne can do some more chores as needed and take a shower and then maybe we get to talk and spend some time together. By this time it is probably 11:00 pm or later and we are both tired.
So, our routine being mostly stable, we have tweaked it to fit in soccer for Sara and now swimming too. No softball this summer!! After 2 summers of All-Star games being played every weekend of June, we are definitely having too much Olivia to do much else. Olivia has now started showing her unique personality and has been struggling to break out of the fog of CdLS. She will do her little laugh more often and is very ticklish too. She has a couple of soft stuffed animals that make her smile too. She will try to "launch" herself forward or to one side if she is sitting up enough. She also displayed the kicking and thrashing motions of a baby who wants to roll over when she is on her back. It is hard to let her do too much though, because it usually triggers her to spit-up. Her G-tube also can get irritated easily if she puts too much pressure on it, so we tend to put her on her right side if she is to lay down on one side. We still keep her pretty well elevated at an angle with her head higher to reduce the vomiting. She sleeps this way too. She has shown a desire to not be sitting in her chair all day too. She has been thriving on being held and gnawing on mom's arm. This is a positive step for sure. She doesn't eat or drink anything herself yet, but she will bring teething toys to her mouth and try them out for a bit. She will do a transfer from one hand to another with a toy (usually a small plastic ring) and the other week she found her toes with her hands. She can spend quite a bit of time grabbing at her toes and pulling on them.
I would have to say that she has developed quite a lot for her. With these changes, she will now take some real naps during the day. Having to sit in a chair all day and not being able to be held very often made her more fussy and fidgety. So, now that she gets out and gets "handled" and is allowed to move herself as much as her ability allows her too, she is more content and properly tired. Her voice is still a hoarse raspy grunt, but she can make a real "coo" occasionally too. She just doesn't babble that much, and saves her most vocal times for when she is mad. She has a mad face that would be hard pressed to find a match among any child!!! She can stick out that bottom lip and really pout when she is unhappy. Although she is usually only unhappy when she is in pain or discomfort from gas or diaper rash. Those are the two big things that seem to be difficult to control and keep from bothering her. She had some real bad skin breakdowns back in April and early May, which we had to treat with prescription ointment. Her fundoplication (which we thought must have failed completely at one time) is probably restricting her ability to burp out gas on her own. We think it has caused the bad reflux due to its being herniated. There is not much we can do about that at this time. So, she gets some meds and we "vent" her quite often to relieve the pressure in her stomach.
The only other big change is the Oxygen. We had been turning down the amount she gets (it is done on a ml/l, ie, milliliter per liter basis) to almost nothing, and the other day, Adrienne took the nasal cannula off Olivia (it has to be taped to her face) and left the oxygen machine running just in case. She hooked her up to the Pulsox machine (which just has a little band that wraps around her foot and gives a reading of her blood/oxygen saturation and her heart rate. She has been able to keep herself at and around the recommended level of 95% most of the time. When she sleeps it will make it up to 98% or higher easily. Only when she moves around a bunch does it not give a good reading. The machine is just too sensitive to pick up a clean signal when she is kicking. Well, that has been most of our past 2 months. I will try and get some new pictures of her now that we are off the oxygen and she doesn't have anything taped to her face. Drop us a line if you have the time and if you have any questions or anything to say at all. We also are keeping Roger Bombardier in our thoughts as he is in training to go off to Iraq with his National Guard unit from Vermont, as well as, Elfrieda Schultz, who keeps the doctors baffled every time she recovers from an illness. I suppose her work here is just not done yet, and at 102 years of age too!!
be seeing you, Andrew
Well, it has been 2 months since I have written an update. We have been busy keeping up with our lives so much, that I have been too tired at night to write anything. So, I am going to try writing this at work during lunch. Olivia has been home this whole time, so that is a good thing. She slowly got over most of the horrid congestion that really messed her up back in February and March. We have not used the suction machine in quite a while. I can't remember when the last time was! I don't really know how much she weighs now, but back in April sometime she was at 11 pounds. I think she must be closer to 13 by now, but I really don't know. She definitely has grown a bit in the past two months. We have held steady on the 3 meds for quite a while now. HCT, Zantac and Bethanocal are the only meds she is on currently. Some day she will get off the HCT for sure.
Olivia has decided to try and do things now that she is no longer sick from the crud or anything else. She still produces an enormous amount of mucous, which will usually find a way out of her via vomiting if we don't vent her G-tube and dispose of it ourselves. That is probably the most tiring and time consuming part of our day with Olivia. She is still on continuous feeds at the same rate as before as well. We have tried a few times to increase the rate or the dose, but it does not agree with her at all. This is one of the dilemmas with a CdLS child. They just don't grow very fast, and therefore don't increase their food intake very rapidly.
So, for the past two months we have established a routine around Olivia. I get up around 6:30 am and get Sara up too (on school days) and then I can let mom get to the bathroom before I leave and take Sara to school too. I am able to let the dog out for a bit too and boil water and bring down the nights' supply of bottles to be cleaned along with the med syringes (no needles, they just pop onto a port on the tube out of the G-tube). Adrienne is in full steam ahead mode from when I leave around 7:30 am until I get back. She has been able to get Andy to his preschool on Tuesdays and Thursdays with Olivia in tow. And on Mon, Wed, and Fri she has Andy all day too and then picks Sara up from school. Other than that, and doctor visits, Adrienne is at home with Olivia. When I come home from work, I pay a little visit to Adrienne and Olivia and give mom a break if she needs it, otherwise I start making dinner. We try to eat by 6:30 if possible and then I am on Olivia duty and Adrienne comes downstairs to eat and clean the kitchen and squeeze in any other chores (of which there are always plenty) before it gets too late. She usually puts Andy to bed and tries to spend some time with Sara too, while I give Olivia her bath (which she doesn't really like very much) and get her put to bed. Then, Adrienne can do some more chores as needed and take a shower and then maybe we get to talk and spend some time together. By this time it is probably 11:00 pm or later and we are both tired.
So, our routine being mostly stable, we have tweaked it to fit in soccer for Sara and now swimming too. No softball this summer!! After 2 summers of All-Star games being played every weekend of June, we are definitely having too much Olivia to do much else. Olivia has now started showing her unique personality and has been struggling to break out of the fog of CdLS. She will do her little laugh more often and is very ticklish too. She has a couple of soft stuffed animals that make her smile too. She will try to "launch" herself forward or to one side if she is sitting up enough. She also displayed the kicking and thrashing motions of a baby who wants to roll over when she is on her back. It is hard to let her do too much though, because it usually triggers her to spit-up. Her G-tube also can get irritated easily if she puts too much pressure on it, so we tend to put her on her right side if she is to lay down on one side. We still keep her pretty well elevated at an angle with her head higher to reduce the vomiting. She sleeps this way too. She has shown a desire to not be sitting in her chair all day too. She has been thriving on being held and gnawing on mom's arm. This is a positive step for sure. She doesn't eat or drink anything herself yet, but she will bring teething toys to her mouth and try them out for a bit. She will do a transfer from one hand to another with a toy (usually a small plastic ring) and the other week she found her toes with her hands. She can spend quite a bit of time grabbing at her toes and pulling on them.
I would have to say that she has developed quite a lot for her. With these changes, she will now take some real naps during the day. Having to sit in a chair all day and not being able to be held very often made her more fussy and fidgety. So, now that she gets out and gets "handled" and is allowed to move herself as much as her ability allows her too, she is more content and properly tired. Her voice is still a hoarse raspy grunt, but she can make a real "coo" occasionally too. She just doesn't babble that much, and saves her most vocal times for when she is mad. She has a mad face that would be hard pressed to find a match among any child!!! She can stick out that bottom lip and really pout when she is unhappy. Although she is usually only unhappy when she is in pain or discomfort from gas or diaper rash. Those are the two big things that seem to be difficult to control and keep from bothering her. She had some real bad skin breakdowns back in April and early May, which we had to treat with prescription ointment. Her fundoplication (which we thought must have failed completely at one time) is probably restricting her ability to burp out gas on her own. We think it has caused the bad reflux due to its being herniated. There is not much we can do about that at this time. So, she gets some meds and we "vent" her quite often to relieve the pressure in her stomach.
The only other big change is the Oxygen. We had been turning down the amount she gets (it is done on a ml/l, ie, milliliter per liter basis) to almost nothing, and the other day, Adrienne took the nasal cannula off Olivia (it has to be taped to her face) and left the oxygen machine running just in case. She hooked her up to the Pulsox machine (which just has a little band that wraps around her foot and gives a reading of her blood/oxygen saturation and her heart rate. She has been able to keep herself at and around the recommended level of 95% most of the time. When she sleeps it will make it up to 98% or higher easily. Only when she moves around a bunch does it not give a good reading. The machine is just too sensitive to pick up a clean signal when she is kicking. Well, that has been most of our past 2 months. I will try and get some new pictures of her now that we are off the oxygen and she doesn't have anything taped to her face. Drop us a line if you have the time and if you have any questions or anything to say at all. We also are keeping Roger Bombardier in our thoughts as he is in training to go off to Iraq with his National Guard unit from Vermont, as well as, Elfrieda Schultz, who keeps the doctors baffled every time she recovers from an illness. I suppose her work here is just not done yet, and at 102 years of age too!!
be seeing you, Andrew
Tuesday, March 22, 2005
In, and out, and in, and out of the hospital
It seems that every time I update the Olivia page something happens that is different than what I wrote. So, here we go. It has been a month since I wrote anything about Olivia and us. I think that the very next day after the last update was a Friday, and Adrienne had to take Olivia to see our Pulmonary specialist. On first view, with X-rays and such, her lungs looked much clearer. They just need more time to clear up. But, they took some blood and found what appeared to be an elevated white blood cell count. The Doctor wanted Olivia to be admitted to the hospital so they could keep an eye on her. So, Adrienne packed up her stuff and moved in for the weekend again. Every time she has had to go back in, we have had to retrain the nurses and staff. One nurse was going to give Olivia some of her meds orally. Well, she doesn't take anything by mouth at this time, she is all through the G-tube (now the Mic-Key Button ). She still has no strong rooting reflex, and her small and underdeveloped mouth and tongue make it too difficult to swallow consistently. She has had such a hard time with the phlegm and the reflux, that if she is moved too much or agitated she will probably spit up.
So, That weekend I was also doing the BIG 5th grade Seder Dinner at the church, where we cook dinner for about 150 people. This was my 4th year to be the “Chef” and it is always hectic and crazy and fun and well worth it. We have a traditional Seder plate for the ceremony, and we make a full meal to go with it: Brisket, new potatoes, carrots, and green beans and an Apple/Walnut salad. (we go through the Seder, which is part of Passover, and then end with Communion to show how things were done and then changed with the coming of Jesus; his last supper was basically a Passover meal; this way we link the old with the new) Anyway, the kids went to Gramama's and Poppy's house for the day and evening, and I was wrestling with the Crud that was going around, and it was generally and exhausting weekend for all of us.
We caught the Crud from Andy (who brought it home from preschool; they have learned to share nicely) and we passed it around the house, and thought that maybe Olivia has ended up with a touch it herself. The doctor had ordered an upper GI series for Olivia and that ended up not being done correctly at all. He wasn't sure if he believed that reflux was the culprit with her spitting up all the time. They were to have put 90cc of the Barium solution in her G-tube while “filming” it in the radiology lab, but they ended up only using 30cc which was not enough for her to display the reflux at all. We were not happy and the doctor was not pleased either. Well, Adrienne brought Olivia home Monday the 28th and we started our routine over again. Olivia seemed to still have a bunch of junk clogging her nasal passages, so we suctioned several times a day, and she would still sound junky.
Adrienne took her back to the hospital on Friday the 4th of March thinking that her lungs had fluid in them. She sounded really bad on Thursday night. We thought that she was getting really sick. So, again we were able to trade off staying with her. I was able to see the doctor as he came by during his rounds. I was able to explain why we felt that she was not just gagging on phlegm in the back of her throat (which was also happening), but that it was truly reflux. Our one bit of proof was the fact that Olivia was given some pediatric Tylenol via her G-tube and she spit up bringing the pink medicine with it. So, our doctor (the pulmonary specialist guy) decided that she may have had the fundoplication too tight and perhaps nothing could go down her throat, like saliva and mucous, and that it may have also herniated, causing an occasional spurt of fluid up the esophagus. So, Olivia seemed to do fine that weekend and she was scheduled for another upper GI series on Monday.
This time, they were able to do it right. Our doctor went with Adrienne and Olivia this time. First they put some fluid down her throat to see if it would go pass the fundoplication. It did, so we knew that her fundo was not completely closing her stomach. Next they did the “barium swallow” which for Olivia is just pushing the solution into her G-tube. So, they did a full 90cc and she promptly had the reflux and spit up and probably aspirated on it as well. Well, we knew then that we were right. The doctor realized that her fundo had failed. They have pondered whether we want to redo the surgery. So far, that is a big NO. She would be in the hospital for at least a month again I am sure, if we did that. We decided that we would try tackling it with meds.
So, after coming home again that time on the 7th, we had an appointment with an ENT coming up. Adrienne took Olivia along with our other advocate, Nancy, who works full time with special needs children who have trouble with development like Olivia. Learning to eat and on upward to other motor skills. She had a scope done on her esophagus, which showed us that it was pretty well inflamed and thus producing much mucous to try and heal itself. This doctor decided that we should put Olivia on Previcid and Regalin (two reflux meds, not sure of the actual spelling). We started this regime and Olivia seemed to have a much harder time. The Previcid is a tablet that we had to dissolve and give her. It would never fully break down. So, we were also in line to see the GI specialist soon too.
After the GI specialist, we went back to Zantac and Bethanocal, one for reflux and the other to help calm the stomach muscles. She still has had reflux trouble day in and day out. She was on 6 different meds for heart, lungs, reflux, antibiotics which we were giving at just about any time of day and night. During all this, Olivia has shown signs of slowly getting stronger and more developed. She likes to hold onto those connecting plastic baby rings. She will try to move around, like holding her head up and trying to sit up. She weighs around 10lbs and 14 ozs as of March 21st . She still is on Oxygen, although we are slowly weaning her of it now. (hope to have her off it by summer) We are still doing continuous feeds and have switched from the Lacto-free formula to something more expensive, the predigested, milk protein-free stuff. Also, our cardiologist took her off two of the meds. The heart med (Digoxin) and the Spironolactone (a diuretic). She has still been spitting up, maybe a bit less than before, but it is still spontaneous and not always predictable. The cardiologist gave us her latest diagnosis on Olivia's heart the other day....PDA remains closed and the clamp is holding up nicely. She has a moderate sized VSD and a mild to moderate pulmonary valve stenosis. Both of these may require surgery when she is 2 or 3 if they don't heal themselves....I suppose they could take care of both at once, although I am not sure what they can do for the stenosis.
In the meantime, we have tried to keep Andy and Sara busy and involved with us as much as possible. We will keep Roger in our thoughts as he has been sent off to training camps before being deployed to Iraq (it was going to be Afghanistan, but that has changed) for 12 months. Let's hope it goes smoothly and he brings back just memories and pictures when he comes home. We hope Aunt Yvonne recovers from her medical tribulations and last but not least, we hope and pray for Grandma (Elfrieda) for a full recovery after her last bought with illness, as well as all the Schultz family over there in Georgia.
be seeing you, Andre
So, That weekend I was also doing the BIG 5th grade Seder Dinner at the church, where we cook dinner for about 150 people. This was my 4th year to be the “Chef” and it is always hectic and crazy and fun and well worth it. We have a traditional Seder plate for the ceremony, and we make a full meal to go with it: Brisket, new potatoes, carrots, and green beans and an Apple/Walnut salad. (we go through the Seder, which is part of Passover, and then end with Communion to show how things were done and then changed with the coming of Jesus; his last supper was basically a Passover meal; this way we link the old with the new) Anyway, the kids went to Gramama's and Poppy's house for the day and evening, and I was wrestling with the Crud that was going around, and it was generally and exhausting weekend for all of us.
We caught the Crud from Andy (who brought it home from preschool; they have learned to share nicely) and we passed it around the house, and thought that maybe Olivia has ended up with a touch it herself. The doctor had ordered an upper GI series for Olivia and that ended up not being done correctly at all. He wasn't sure if he believed that reflux was the culprit with her spitting up all the time. They were to have put 90cc of the Barium solution in her G-tube while “filming” it in the radiology lab, but they ended up only using 30cc which was not enough for her to display the reflux at all. We were not happy and the doctor was not pleased either. Well, Adrienne brought Olivia home Monday the 28th and we started our routine over again. Olivia seemed to still have a bunch of junk clogging her nasal passages, so we suctioned several times a day, and she would still sound junky.
Adrienne took her back to the hospital on Friday the 4th of March thinking that her lungs had fluid in them. She sounded really bad on Thursday night. We thought that she was getting really sick. So, again we were able to trade off staying with her. I was able to see the doctor as he came by during his rounds. I was able to explain why we felt that she was not just gagging on phlegm in the back of her throat (which was also happening), but that it was truly reflux. Our one bit of proof was the fact that Olivia was given some pediatric Tylenol via her G-tube and she spit up bringing the pink medicine with it. So, our doctor (the pulmonary specialist guy) decided that she may have had the fundoplication too tight and perhaps nothing could go down her throat, like saliva and mucous, and that it may have also herniated, causing an occasional spurt of fluid up the esophagus. So, Olivia seemed to do fine that weekend and she was scheduled for another upper GI series on Monday.
This time, they were able to do it right. Our doctor went with Adrienne and Olivia this time. First they put some fluid down her throat to see if it would go pass the fundoplication. It did, so we knew that her fundo was not completely closing her stomach. Next they did the “barium swallow” which for Olivia is just pushing the solution into her G-tube. So, they did a full 90cc and she promptly had the reflux and spit up and probably aspirated on it as well. Well, we knew then that we were right. The doctor realized that her fundo had failed. They have pondered whether we want to redo the surgery. So far, that is a big NO. She would be in the hospital for at least a month again I am sure, if we did that. We decided that we would try tackling it with meds.
So, after coming home again that time on the 7th, we had an appointment with an ENT coming up. Adrienne took Olivia along with our other advocate, Nancy, who works full time with special needs children who have trouble with development like Olivia. Learning to eat and on upward to other motor skills. She had a scope done on her esophagus, which showed us that it was pretty well inflamed and thus producing much mucous to try and heal itself. This doctor decided that we should put Olivia on Previcid and Regalin (two reflux meds, not sure of the actual spelling). We started this regime and Olivia seemed to have a much harder time. The Previcid is a tablet that we had to dissolve and give her. It would never fully break down. So, we were also in line to see the GI specialist soon too.
After the GI specialist, we went back to Zantac and Bethanocal, one for reflux and the other to help calm the stomach muscles. She still has had reflux trouble day in and day out. She was on 6 different meds for heart, lungs, reflux, antibiotics which we were giving at just about any time of day and night. During all this, Olivia has shown signs of slowly getting stronger and more developed. She likes to hold onto those connecting plastic baby rings. She will try to move around, like holding her head up and trying to sit up. She weighs around 10lbs and 14 ozs as of March 21st . She still is on Oxygen, although we are slowly weaning her of it now. (hope to have her off it by summer) We are still doing continuous feeds and have switched from the Lacto-free formula to something more expensive, the predigested, milk protein-free stuff. Also, our cardiologist took her off two of the meds. The heart med (Digoxin) and the Spironolactone (a diuretic). She has still been spitting up, maybe a bit less than before, but it is still spontaneous and not always predictable. The cardiologist gave us her latest diagnosis on Olivia's heart the other day....PDA remains closed and the clamp is holding up nicely. She has a moderate sized VSD and a mild to moderate pulmonary valve stenosis. Both of these may require surgery when she is 2 or 3 if they don't heal themselves....I suppose they could take care of both at once, although I am not sure what they can do for the stenosis.
In the meantime, we have tried to keep Andy and Sara busy and involved with us as much as possible. We will keep Roger in our thoughts as he has been sent off to training camps before being deployed to Iraq (it was going to be Afghanistan, but that has changed) for 12 months. Let's hope it goes smoothly and he brings back just memories and pictures when he comes home. We hope Aunt Yvonne recovers from her medical tribulations and last but not least, we hope and pray for Grandma (Elfrieda) for a full recovery after her last bought with illness, as well as all the Schultz family over there in Georgia.
be seeing you, Andre
Thursday, February 24, 2005
3 weeks and counting ... (or, tempus fugit)
Well, due to popular demand, the Olivia update is back. More than just popular demand though, it has been a while since I wrote anything about her to anyone. I called M&P (Dave and Barbara) after they sent a few emails my way, and I just did not have the time or energy to sit and write anything at all. I used to write pages and pages of raw unfiltered thoughts in notebook after notebook.... The Austin days and then the Taos days. After that, inspiration just got up and went away for a while. Living within a gunshot of the modern barrio of Spring Branch can do that to even the heartiest of souls. We are all glad to be out of there. We are glad that Appau is in a safer and cleaner place too. Whoever bought the old Rosstown house gutted it and restarted it like Extreme Make over Home edition or something, maybe Ty was out there, who knows? But anyway, onto the writing of the moment. I have had those buzzing writer's thoughts bouncing around the past couple of days, as if the Ghost of Jane Hardy and Hunter Thompson both jumped on in and are trying to wrest control of the cerebellum to allow the thick Mesozoic sediments to be tapped and exploited. The Primordial ooze of my stream of conscience is bubbling up....don't worry though, I've got my boots on and my shovel handy. (I'll have to write out my thoughts to HST sometime soon for sure, gonna miss you big guy)
So, she's been home these past 3 weeks now. We started off fairly steady. Feeds were the same, meds the same. All the rest of us sleeping in the big bed together trying to get in as much contact as possible. The prescribed regimen for weaning Olivia off the narcotics was pretty steep. The first couple of days was smooth, and then we went too fast for sure. She had at least two nights of colic like crying and writhing and just basically a total nightmare for Adrienne mostly. Adrienne was able to get back in touch with the doctors (or at least one of them, probably the PICU specialist) at the PICU and they had another Rx drawn up for us and we changed the regimen to something a bit slower and sensible. We had her weaned off the junk in just a few more days. She seemed to be doing better then, same meds and continuous feeds of about 22 mls an hour of a high calory mix of Lacto-Free Lipil. Adrienne had to take her to the Pediatrician to be weighed, and of course those folks just don't know what to think of a 5 month old who is still so small. And also, she had to take her to a local clinic for a blood test (checking electrolytes) which is just a heel-stick (or a finger-stick). These small tasks required more planning than a beach landing by the marines. Adrienne succeeded each time. Semper Fi! She has been the grunt for sure, first in last out, all of that stuff.
I even got in on the game and have become somewhat competent on the Suction Catheter. This is a horrid little beast of a machine that sounds like a leaf blower or one of those little rice-burners that the kids race up and down Westheimer in the wee hours on the weekend. In the hospital, everything connects to something in the wall and you don't hear much but the ambient white noise of many machines somewhere reverberating in the walls. At home the machines are smaller portable and loud as hell. The suctioning is probably the hardest to deal with. I can deal with diapers and blood (needles still bother me) and wounds and stuff, but phlegm just sets me off. The whole trick is to stay sterile. She was so congested for the first week and a half or 2, that we had to suction the snot out of her. Real nasty. The original nasal catheter kits had 2 surgical gloves and a little nasal catheter (we used a 6 Fr). You have to unwrap it carefully and get out one glove and put it on and put the other on with the gloved hand. The idea being that one hand will be completely sterile and the other kind of sterile. We had both seen the RT's do this in the hospital and some of them had a hard time. Of course, some of them are pretty efficient at it too. Well, you have to squirt some saline solution into a nostril, dab a little K-Y onto the end of the catheter and with the sterile hand, steer it into her nose and then down into the nasal cavity (sometimes into her throat via the nose) and the other hand would plug the opening of the catheter to allow full suctioning pressure to happen. This is done while the leaf blower machine (which is the actual suction pump) is on full blast and your little girl is crying and clenching up, thus blocking the nasal passage... If this doesn't trip a few switches in the brain, nothing will. So, like I said, I became somewhat competent at the suctioning process, and we were able to clear up some "stuff" from her so she could breathe a little easier.
After getting off the narcotics (the doctor who prescribes this stuff has to provide a DEA number to the pharmacy, it is a controlled substance after all) Olivia did start to show some signs of being a baby. She gets visibly excited when her mom comes in the room. She will actually smile (her own version, which is not as expressive as a typical baby) and she has started discovering her hands and really notices when there is a change in her mobile or with another little toy that we can tie to the crib railing. She will hold onto to the G-tube and just kind of keep it loosely in her hand like a security thing.
Having clueless health care providers is an emotional drain for all of us. I am sure some of you have been through the grinder before. Adrienne has called this doctor and that one and this other group and the OT folks and we are just not real impressed. Our Olivia is truly an enigma. So, then she started having bouts of gagging that were more intense than ever before. She would gag and spit up some mucous or something, and we have been trying to figure that out. Is she now showing an allergy to the cow-milk protein in the formula? Is the continuous feed messing her up? Is she just sick? (ei, the flu or some bug that one of us gave her, heck we've all been fighting something lately, who knows what it could be) Adrienne called each clueless and unavailable doctor, nurse and contact we could find....That is still an issue for now. Otherwise, the cardiologist proclaimed her heart as much better, with the VSD getting smaller and everything else doing fine. The pulmonary doctor has proclaimed her lungs as being pretty darn good, not ready to get off the Oxygen yet though. Still plenty of healing to do there. Today the surgeon had a look at her and exclaimed, "she sure has had a lot of surgeries." No kidding, doctor, I think you were there for all of them too. What a character. He did put her on a Mackey Button (pronounced as Mickey) instead of the tube with stabilizer as we had since he put it in last year. He showed Adrienne his wonderful bedside manner by removing the stabilizer with a strong pull....we have changed them out and always used some medical tape remover wipes and made sure not to make it traumatic. Way to go Doc!! what an ass. He is a good surgeon, just not the guy you want handling the news or the delicate stuff. needless to say, Olivia cried pretty hard at that. Adrienne has been through just as much of this chaos as Olivia, and she is pretty tired now. This week has been quite the adventure with the rain and doctors and all that....
She will visit the GI specialist on Monday for the "upper GI series" of tests, and maybe we can get some insight into her feeding issues. We still haven't really gotten into any OT with her yet. And we hope to get all the doctors on the same page as far as what meds we need to give her. They all seemed to overlap each other and contradict each other as far as meds and feeding regimen go, even the CdLS foundation has their own recommended pattern....well, that is enough rambling for now, hope I didn't put any of you off your food. We are remaining steadfast and fearless, just tired and confused....
be seeing you, Andrew
So, she's been home these past 3 weeks now. We started off fairly steady. Feeds were the same, meds the same. All the rest of us sleeping in the big bed together trying to get in as much contact as possible. The prescribed regimen for weaning Olivia off the narcotics was pretty steep. The first couple of days was smooth, and then we went too fast for sure. She had at least two nights of colic like crying and writhing and just basically a total nightmare for Adrienne mostly. Adrienne was able to get back in touch with the doctors (or at least one of them, probably the PICU specialist) at the PICU and they had another Rx drawn up for us and we changed the regimen to something a bit slower and sensible. We had her weaned off the junk in just a few more days. She seemed to be doing better then, same meds and continuous feeds of about 22 mls an hour of a high calory mix of Lacto-Free Lipil. Adrienne had to take her to the Pediatrician to be weighed, and of course those folks just don't know what to think of a 5 month old who is still so small. And also, she had to take her to a local clinic for a blood test (checking electrolytes) which is just a heel-stick (or a finger-stick). These small tasks required more planning than a beach landing by the marines. Adrienne succeeded each time. Semper Fi! She has been the grunt for sure, first in last out, all of that stuff.
I even got in on the game and have become somewhat competent on the Suction Catheter. This is a horrid little beast of a machine that sounds like a leaf blower or one of those little rice-burners that the kids race up and down Westheimer in the wee hours on the weekend. In the hospital, everything connects to something in the wall and you don't hear much but the ambient white noise of many machines somewhere reverberating in the walls. At home the machines are smaller portable and loud as hell. The suctioning is probably the hardest to deal with. I can deal with diapers and blood (needles still bother me) and wounds and stuff, but phlegm just sets me off. The whole trick is to stay sterile. She was so congested for the first week and a half or 2, that we had to suction the snot out of her. Real nasty. The original nasal catheter kits had 2 surgical gloves and a little nasal catheter (we used a 6 Fr). You have to unwrap it carefully and get out one glove and put it on and put the other on with the gloved hand. The idea being that one hand will be completely sterile and the other kind of sterile. We had both seen the RT's do this in the hospital and some of them had a hard time. Of course, some of them are pretty efficient at it too. Well, you have to squirt some saline solution into a nostril, dab a little K-Y onto the end of the catheter and with the sterile hand, steer it into her nose and then down into the nasal cavity (sometimes into her throat via the nose) and the other hand would plug the opening of the catheter to allow full suctioning pressure to happen. This is done while the leaf blower machine (which is the actual suction pump) is on full blast and your little girl is crying and clenching up, thus blocking the nasal passage... If this doesn't trip a few switches in the brain, nothing will. So, like I said, I became somewhat competent at the suctioning process, and we were able to clear up some "stuff" from her so she could breathe a little easier.
After getting off the narcotics (the doctor who prescribes this stuff has to provide a DEA number to the pharmacy, it is a controlled substance after all) Olivia did start to show some signs of being a baby. She gets visibly excited when her mom comes in the room. She will actually smile (her own version, which is not as expressive as a typical baby) and she has started discovering her hands and really notices when there is a change in her mobile or with another little toy that we can tie to the crib railing. She will hold onto to the G-tube and just kind of keep it loosely in her hand like a security thing.
Having clueless health care providers is an emotional drain for all of us. I am sure some of you have been through the grinder before. Adrienne has called this doctor and that one and this other group and the OT folks and we are just not real impressed. Our Olivia is truly an enigma. So, then she started having bouts of gagging that were more intense than ever before. She would gag and spit up some mucous or something, and we have been trying to figure that out. Is she now showing an allergy to the cow-milk protein in the formula? Is the continuous feed messing her up? Is she just sick? (ei, the flu or some bug that one of us gave her, heck we've all been fighting something lately, who knows what it could be) Adrienne called each clueless and unavailable doctor, nurse and contact we could find....That is still an issue for now. Otherwise, the cardiologist proclaimed her heart as much better, with the VSD getting smaller and everything else doing fine. The pulmonary doctor has proclaimed her lungs as being pretty darn good, not ready to get off the Oxygen yet though. Still plenty of healing to do there. Today the surgeon had a look at her and exclaimed, "she sure has had a lot of surgeries." No kidding, doctor, I think you were there for all of them too. What a character. He did put her on a Mackey Button (pronounced as Mickey) instead of the tube with stabilizer as we had since he put it in last year. He showed Adrienne his wonderful bedside manner by removing the stabilizer with a strong pull....we have changed them out and always used some medical tape remover wipes and made sure not to make it traumatic. Way to go Doc!! what an ass. He is a good surgeon, just not the guy you want handling the news or the delicate stuff. needless to say, Olivia cried pretty hard at that. Adrienne has been through just as much of this chaos as Olivia, and she is pretty tired now. This week has been quite the adventure with the rain and doctors and all that....
She will visit the GI specialist on Monday for the "upper GI series" of tests, and maybe we can get some insight into her feeding issues. We still haven't really gotten into any OT with her yet. And we hope to get all the doctors on the same page as far as what meds we need to give her. They all seemed to overlap each other and contradict each other as far as meds and feeding regimen go, even the CdLS foundation has their own recommended pattern....well, that is enough rambling for now, hope I didn't put any of you off your food. We are remaining steadfast and fearless, just tired and confused....
be seeing you, Andrew
Tuesday, February 01, 2005
Home again, home again, jiggity jig
Okay, the last update was not so pleasant. It was a hard time there for a while. She did slowly recover her strength and her right lung slowly re inflated and held its' own. She seemed to overcome the infection that she may have had. Those were long slow weeks indeed. We just stayed the course as they weaned her off the C-PAP and the level of O2 and the amount of suctioning and other Respiratory treatments as well. They started dotting the i's and crossing the t's in the past week. Checking and rechecking various samples of blood, urine and feces (oh, what fun!) for all the things that should be there and for what shouldn't be there ... finally, they started liking what they were seeing. Caution, do not stop on the tracks!! I suppose the caution is well deserved, since we had been sent home twice before and just came back worse each time. Don't want to screw it up a third time. The kids have been aching for mom to come home. I miss her too. We would see each other like the proverbial ships in the night (but usually in the day time).
She is home!! She is home!! She is home!! Huzzah!! Huzzah!! ... She finally is home again. I feel pretty good about it all this time. She has been almost fully weaned from the hard drugs, and is on several others for the time being. Heart meds and a couple of diuretics to keep the fluid flowing through her. She actually did gain some weight too. She is pretty much right in the middle of the charts for CdLS kids ... she weighs a whopping 9 lbs (give or take an ounce) and has little fat rolls on her legs, just like a chubby 1 month old. She will be 5 months on Feb 3rd. That is hard to believe. We have been just going around and around and around ...
We have had some great words and prayers from many of you out there. There are people all over the country that know our story, and we have also gotten to know several other folks who have had trying circumstances with the health of family members. Give a prayer, get a prayer. We are finally home again. I certainly hope we won't have that experience again. I do know that our journey is just beginning. Olivia will take much more strength from our entire family and plenty of courage too. I am not sure how often I will post updates as the days turn to weeks to months ... I will try to keep everybody in the loop. If you haven't heard from us in a while, drop a line my way and I will try to get it together and email back or make a new update. As long as my dear friend Crit can give me the bandwidth (or until I can get it set up on my own), there will be a place to go and check things out. I will take some new pictures of Olivia again when she doesn't have the nasal cannula anymore. In the meantime, we will be visiting the cardio team and the pulmonary team on a fairly regular schedule. We will begin to get into the OT again too, to try and train her to eat. Sign language will probably become very useful for us as well. so, stay tuned and thanks for all the kind words prayers and gifts that you all have given us, it is truly humbling to know that so many people care ...
be seeing you,
Andrew and family
She is home!! She is home!! She is home!! Huzzah!! Huzzah!! ... She finally is home again. I feel pretty good about it all this time. She has been almost fully weaned from the hard drugs, and is on several others for the time being. Heart meds and a couple of diuretics to keep the fluid flowing through her. She actually did gain some weight too. She is pretty much right in the middle of the charts for CdLS kids ... she weighs a whopping 9 lbs (give or take an ounce) and has little fat rolls on her legs, just like a chubby 1 month old. She will be 5 months on Feb 3rd. That is hard to believe. We have been just going around and around and around ...
We have had some great words and prayers from many of you out there. There are people all over the country that know our story, and we have also gotten to know several other folks who have had trying circumstances with the health of family members. Give a prayer, get a prayer. We are finally home again. I certainly hope we won't have that experience again. I do know that our journey is just beginning. Olivia will take much more strength from our entire family and plenty of courage too. I am not sure how often I will post updates as the days turn to weeks to months ... I will try to keep everybody in the loop. If you haven't heard from us in a while, drop a line my way and I will try to get it together and email back or make a new update. As long as my dear friend Crit can give me the bandwidth (or until I can get it set up on my own), there will be a place to go and check things out. I will take some new pictures of Olivia again when she doesn't have the nasal cannula anymore. In the meantime, we will be visiting the cardio team and the pulmonary team on a fairly regular schedule. We will begin to get into the OT again too, to try and train her to eat. Sign language will probably become very useful for us as well. so, stay tuned and thanks for all the kind words prayers and gifts that you all have given us, it is truly humbling to know that so many people care ...
be seeing you,
Andrew and family
Wednesday, January 19, 2005
extubation finally...
Last Friday, January 14th was a really good day. The day before, Olivia was extubated. She was set up with a nasal cannula to give her some O2 and even her Central Line was removed. It was actually pretty strange to see her with only a feeding tube and an oxygen line. After all the other machines she had, her room looked pretty bare. Adrienne had a really good day with her all day Friday. She was able to hold her for the first time in a month. Olivia was even more alert and showing signs of being as responsive as she's ever been. We were pretty pleased with all this. I almost set in an update right away that night. I suppose I have become too used to the way she responds to really big changes....
Late Friday night or early Saturday morning, Adrienne noticed that she was having trouble breathing. Her stats were very unstable and she just couldn't be comforted at all. After I arrived later that morning to take a shift for the weekend, the team had tried to settle her down with some changes to her O2. They used the fluid bag hooked up to a warmer to make sure she was not just getting dry O2. After her daily X-ray on Saturday, I was told that the right lung appeared to not show up, or be completely "white" on the film. They thought that she might either have it filled up with fluid or collapsed. I was told that any possible procedure for draining fluid out of her lung would be pretty invasive. They also took samples of her blood, which they have done fairly frequently since she has been in the PICU and found an elevated white blood cell count.
Infection.
The main team involved felt that the Central Line had caused the infection, since it was not meant to be a long term IV line, and it was in for a month. So, she needed to have another Central Line put in. They determined that they could do it bedside and I had to leave the room while they came in to fix her up again. Well, after an hour or so, they called me back into the room to tell me that they could not put another Central Line in, so they would have to do the other version of a Central Line. This involved a trip to the OR and they would have to fully sedate her again, and I had to sign the consent forms as well. This version is rather strange, but it is meant to be an IV line that can withstand infection better than the standard Central Line. They go under her skin in her chest (a very small opening, a little hole really) and snake a line just under the skin up to her neck and then tap a vein there. They also had to make an incision in her neck to put the line into a vein there. Another day at the office, huh? She has now been under the knife three times and we still cannot get her completely stable.
After all this and Olivia was brought back to the room, they ran some more X-rays and decided that she had a collapsed lung. It seems that the infection (from the Central Line) had made her a bit weak, and she began to breathe more rapid and shallowly. Since she had been having a machine do most of her breathing for her for a month, her lungs were just not up to the job to do it on their own yet. So, they gave her some more meds to help adjust her heart rate and they increased the O2 level to push more air into her lungs and get the right side to open up more. The Respiratory Techs came in and also began giving her the treatments regularly as well. This includes tapping on the sides of her chest to loosen up any junk there. and also the vapor mist, which is some foul smelling stuff that comes out of a tube like dry ice smoke or something. I would sure breathe easier and protest if they put that stuff in my face. They also suction the secretions out of her nose and throat. She has been producing a prodigious amount of junk.
All the while, she has been getting methadone and some other drugs to wean her off the narcotics and the new round of antibiotics for the infection....so, they took blood, urine and mucous to try and grow something in them to show what the infection was, but nothing has grown as of today. Infection? they sure seem to think so, but there is no real proof in the blood work or in any of the fluids, so who knows.
Adrienne has been coming and going since Sunday again, and it they finally put her on the real CPAP ventilator (we are hoping as are the doctors, to avoid intubating her again) which means, literally, Constant Positive Air Pressure. This will keep the lungs inflated with some rate of air pulses into them. As of today, the new X-rays showed some improvement in the right lung, but not a ton. They eased off some more of the sedation and she reacted by being mad. At least she can react, and we know that Olivia is still in there and will let us know it when we finally get off the heavy meds and get her back to our "normal" status.
In other news, Sara will be playing soccer this spring instead of softball. We had been playing softball since spring of 2001, for both spring and fall sessions and 2 All-Star teams as well. She really wanted to play something different, so why not. The big plusses for us are that the games and the practices are to be held at fields by her school, and we won't have to drive at all!!! Andy is still not in any organized sport or anything, he will have plenty of time soon enough.
On the not so happy part of the family news (other than the continuing story of Olivia) is that Roger Bombardier, (my brother-in-law; married to my sister Sally) will be sent to Afghanistan for a tour of duty with the Vermont National Guard. here is the news as told by my sister (Sarah as she is called now) :
We wish him the best of health and safety on this mission, and a hearty thanks to our President for making it all possible!
be seeing you,
Andrew
Late Friday night or early Saturday morning, Adrienne noticed that she was having trouble breathing. Her stats were very unstable and she just couldn't be comforted at all. After I arrived later that morning to take a shift for the weekend, the team had tried to settle her down with some changes to her O2. They used the fluid bag hooked up to a warmer to make sure she was not just getting dry O2. After her daily X-ray on Saturday, I was told that the right lung appeared to not show up, or be completely "white" on the film. They thought that she might either have it filled up with fluid or collapsed. I was told that any possible procedure for draining fluid out of her lung would be pretty invasive. They also took samples of her blood, which they have done fairly frequently since she has been in the PICU and found an elevated white blood cell count.
Infection.
The main team involved felt that the Central Line had caused the infection, since it was not meant to be a long term IV line, and it was in for a month. So, she needed to have another Central Line put in. They determined that they could do it bedside and I had to leave the room while they came in to fix her up again. Well, after an hour or so, they called me back into the room to tell me that they could not put another Central Line in, so they would have to do the other version of a Central Line. This involved a trip to the OR and they would have to fully sedate her again, and I had to sign the consent forms as well. This version is rather strange, but it is meant to be an IV line that can withstand infection better than the standard Central Line. They go under her skin in her chest (a very small opening, a little hole really) and snake a line just under the skin up to her neck and then tap a vein there. They also had to make an incision in her neck to put the line into a vein there. Another day at the office, huh? She has now been under the knife three times and we still cannot get her completely stable.
After all this and Olivia was brought back to the room, they ran some more X-rays and decided that she had a collapsed lung. It seems that the infection (from the Central Line) had made her a bit weak, and she began to breathe more rapid and shallowly. Since she had been having a machine do most of her breathing for her for a month, her lungs were just not up to the job to do it on their own yet. So, they gave her some more meds to help adjust her heart rate and they increased the O2 level to push more air into her lungs and get the right side to open up more. The Respiratory Techs came in and also began giving her the treatments regularly as well. This includes tapping on the sides of her chest to loosen up any junk there. and also the vapor mist, which is some foul smelling stuff that comes out of a tube like dry ice smoke or something. I would sure breathe easier and protest if they put that stuff in my face. They also suction the secretions out of her nose and throat. She has been producing a prodigious amount of junk.
All the while, she has been getting methadone and some other drugs to wean her off the narcotics and the new round of antibiotics for the infection....so, they took blood, urine and mucous to try and grow something in them to show what the infection was, but nothing has grown as of today. Infection? they sure seem to think so, but there is no real proof in the blood work or in any of the fluids, so who knows.
Adrienne has been coming and going since Sunday again, and it they finally put her on the real CPAP ventilator (we are hoping as are the doctors, to avoid intubating her again) which means, literally, Constant Positive Air Pressure. This will keep the lungs inflated with some rate of air pulses into them. As of today, the new X-rays showed some improvement in the right lung, but not a ton. They eased off some more of the sedation and she reacted by being mad. At least she can react, and we know that Olivia is still in there and will let us know it when we finally get off the heavy meds and get her back to our "normal" status.
In other news, Sara will be playing soccer this spring instead of softball. We had been playing softball since spring of 2001, for both spring and fall sessions and 2 All-Star teams as well. She really wanted to play something different, so why not. The big plusses for us are that the games and the practices are to be held at fields by her school, and we won't have to drive at all!!! Andy is still not in any organized sport or anything, he will have plenty of time soon enough.
On the not so happy part of the family news (other than the continuing story of Olivia) is that Roger Bombardier, (my brother-in-law; married to my sister Sally) will be sent to Afghanistan for a tour of duty with the Vermont National Guard. here is the news as told by my sister (Sarah as she is called now) :
"While it's not officially official, Roger will be deployed on a mission to Afghanistan in late April. The mission will last approximately 14 months which includes two months stateside for training and then a year in country. The reason I say it's not officially official yet is because while Roger's been verbal informed of the mission, the army gives official notice 30 days before a deployment so we won't get "the letter" until March sometime. 330 Vermont National Guards (many from Roger's unit) were deployed today for an 18 month mission, one year of which will be in Iraq. Vermont now has about 50% of our National Guard not in Vermont. Roger was originally tagged for that mission (to the point where he was verbally informed of it) but then the army reassigned him for the Afghan mission. Just thought I'd keep you posted on life in the frozen tundra of Vermont"
We wish him the best of health and safety on this mission, and a hearty thanks to our President for making it all possible!
be seeing you,
Andrew
Wednesday, January 12, 2005
Progressing pretty slowly
Well, since the PDA ligation surgery things have been progressing pretty slowly. She did become a "pink baby" instead of the mottled color that she was at quite often. I don't think she ever qualified as a "blue baby" though. She has been getting a bit more alert each day, and has had some positive steps and some difficulties as well. There are no real reasons for her slow progress other than the fact that she had been sedated and paralyzed for such a long period of time that her body is not ready to really breathe fully on its own. All of her X-rays have been looking really good, although she still has a bit too much moisture in her lungs. They did remove the catheter and foley from her, so her plumbing is functioning properly downstairs. She has been having treatments of C-PAP via the ventilator each day and seems to tolerate it more each day. This is a step towards getting her fully extubated soon I hope. I think the doctors are being very cautious about when they want to extubate her. We don't want her to have too much trouble and have to intubate her all over again. We are not sure how much longer this will take for her to be much more functional and able to breathe on her own.
The fact that she has CdLS will also hinder her ability to show the standard signs of recovery. She will not show many if any of the typical thriving milestones that could be expected from a child with no syndrome. I get asked all the time at work, "how much does she weigh?" which is a question that has little meaning in our situation. First of all, I have no idea. She weighed about 7 lbs going into the hospital a month ago. As far as I know, they have not weighed her since then. I suppose we all tend to judge healthiness in infants by weight, but it is as misleading in her case as it is in most babies cases. CdLS tends to hinder growth sporadically. She may stay at 7 lbs for several months, and then have a growth spurt. She may gain very slowly (ounces) each month or week ... .we don't really know. It is referred as "failure to thrive" which sounds worse than it really is. As long as she takes in nutrition and is able to absorb it, she will grow in her own way.
Our other hurdle that we will have to deal with as she gets bigger and healthier, will be communication. Most CdLS kids have varying degrees of speech impairment. Adrienne has started learning sign language and we expect there to be restrictions in her ability to talk. She has never really made much sound at all. Her cry is hoarse and strained. The goal will be to teach her to communicate with us somehow, and not to let her give up on trying to learn sign language and/or talking. We know that before she was released from the NICU back in November, her hearing was checked, and she passed the test with good marks. This also makes sense with regards to many CdLS kids, in the fact that many of them can understand and learn a lot more than they are able to communicate back to others. They can have autisms and/or autistic tendencies. (you all can just visit the various CdLS links listed on the left and learn more than I have)
So, long story ending ... beginning ... turning pages ... starting chapters ... we are in that dreaded holding pattern again ... I don't really know how much longer she will have to stay in the PICU and when she will come home again and be part of our family again. This past month has started to wear down Sara and Andy a bit more. They are dealing mostly really well, but the break in our standard routine has been trying. I have been busy at work, which is a good thing, but am also tired quite a bit. Adrienne has been running the marathon of Olivia/doctors-home/family and I know she will not ever let up until Olivia comes home.
We will keep moving forward (onward through the fog) and I will keep letting you know how things are going ... don't be afraid to ask us how Olivia is, I may not have anything new to say, but it nice to hear people ask about her and know that you all care.
Well, until such time, be seeing you, Andrew
The fact that she has CdLS will also hinder her ability to show the standard signs of recovery. She will not show many if any of the typical thriving milestones that could be expected from a child with no syndrome. I get asked all the time at work, "how much does she weigh?" which is a question that has little meaning in our situation. First of all, I have no idea. She weighed about 7 lbs going into the hospital a month ago. As far as I know, they have not weighed her since then. I suppose we all tend to judge healthiness in infants by weight, but it is as misleading in her case as it is in most babies cases. CdLS tends to hinder growth sporadically. She may stay at 7 lbs for several months, and then have a growth spurt. She may gain very slowly (ounces) each month or week ... .we don't really know. It is referred as "failure to thrive" which sounds worse than it really is. As long as she takes in nutrition and is able to absorb it, she will grow in her own way.
Our other hurdle that we will have to deal with as she gets bigger and healthier, will be communication. Most CdLS kids have varying degrees of speech impairment. Adrienne has started learning sign language and we expect there to be restrictions in her ability to talk. She has never really made much sound at all. Her cry is hoarse and strained. The goal will be to teach her to communicate with us somehow, and not to let her give up on trying to learn sign language and/or talking. We know that before she was released from the NICU back in November, her hearing was checked, and she passed the test with good marks. This also makes sense with regards to many CdLS kids, in the fact that many of them can understand and learn a lot more than they are able to communicate back to others. They can have autisms and/or autistic tendencies. (you all can just visit the various CdLS links listed on the left and learn more than I have)
So, long story ending ... beginning ... turning pages ... starting chapters ... we are in that dreaded holding pattern again ... I don't really know how much longer she will have to stay in the PICU and when she will come home again and be part of our family again. This past month has started to wear down Sara and Andy a bit more. They are dealing mostly really well, but the break in our standard routine has been trying. I have been busy at work, which is a good thing, but am also tired quite a bit. Adrienne has been running the marathon of Olivia/doctors-home/family and I know she will not ever let up until Olivia comes home.
We will keep moving forward (onward through the fog) and I will keep letting you know how things are going ... don't be afraid to ask us how Olivia is, I may not have anything new to say, but it nice to hear people ask about her and know that you all care.
Well, until such time, be seeing you, Andrew
Monday, January 03, 2005
The PDA surgery finally ...
OK. ... we made it through this past stay at the hospital since I last wrote on the 15th. Adrienne was with her daily during this extremely exhausting time. Olivia's "pneumonia" was not really that at all ... she did have excess fluid build up in her lungs, but not from any viral or bacterial cause ... She did not have a bad cold that grew worse, or anything like that. Her PDA caused too much fluid (blood) to go to the lungs and that seeped into the lungs and caused her to have trouble breathing and then her heart would pump harder to keep up the flow of blood so there would be enough oxygen going into her body and the lungs would try harder and that started the vicious cycle. So ... as was told last time, she really struggled the 1st week in the PICU (Pediatric Intensive Care Unit) and then she became stabilized although this was at a tremendous level of intensive care ... She was put under heavy sedation. She was intubated (tube down the throat into trachea; to force breathing). She was set up with a Central Line IV in her leg (this is a pretty major deal in itself, although a good deal overall as it eliminates the need to poke her a bunch to draw blood or give meds). She was put into a paralytic state via meds. This was done mainly to keep her from fighting the intubation and then get so stressed out due to the pain and discomfort that her heart rate would skyrocket and thus get the vicious cycle going around again. Seeing her in this state was probably one of the hardest things for me since all this began. (Adrienne had seen her in the much more traumatic state when they were doing everything under the sun to keep her with us those first couple of days) They also hooked her up to another apparatus along with the respiratory machine that gave her doses of Nitric Oxide. This was to get the blood vessels in her lungs to dilate and open up. (the pulmonary hypertension constricts the vessels). Slowly. ... .ever so slowly this all worked. Her lungs began to not have so much pressure in them. Her O2 saturation levels went up with less O2 and pressure from the machines. She began to tolerate her feeds (via the G-tube) again. They had manipulated her meds during this time ... something to make her heart work "smarter" not harder; something to make her lose more fluid (a diuretic) to dry her out a bit (no easy task, since it would be dangerous to dry her out so much she dehydrates) and antibiotics since half the team still believed that she had some secondary infection. So, that was our Christmas and New Year's break. The doctors hashed it all out about what needed to be done. They didn't always agree of course, but there were a few that were right alongside with us pushing for the PDA Ligation. (read more about this in previous posts)
Sara and Andy both have been as tolerant and as good as could be expected during all this, and we even managed to have a decent Christmas. ... Heck, it even snowed on Christmas Eve here in Sugar Land!!! we played with some friends down the street and made snow balls and had a nice time. In the morning it was not nearly as pretty as it had started out to be the previous night, but it was still quite a sight for this part of the world. If we had driven down the Sw Freeway to Wharton we could have played in about a foot of snow!!! unbelievable for south Texas for sure.
So, last Monday was supposed to be the surgery day, and they saw that she had an elevated white blood cell count, which signaled infection ... so they put it off and started antibiotics again ... they figured later that week that it was probably a fairly routine and minor infection that she had been exposed to previously. Maybe Thursday or Friday for the surgery then ... close, but no. We were getting a bit tense to say the least ... the longer they wait the greater the chance for her to get sick from just being in the hospital. But, on the plus side, the pressure in her lungs also went down a bit each day ... which was good ... But, then someone thought that she should have more formula in her feed since she was doing so well ... the downside here was that she became stressed a bit with more fluid in her stomach and she had a tough time passing it through.
SO, we finally were set for Monday January 3rd 2005 the very day that she is 4 months old. 4 months and maybe 3 weeks of actual time at home. So, Adrienne got up and made it to the hospital and Olivia's bedside by 5:30 am and I made it up there by 7:30 am to be ready to see her off to the surgery (it was supposed to be one of the 1st ones) we saw some of the doctors and we were waiting for it all to begin. ... Oh, yeah, when I went to sign in Jeff McDonald one of our pastors from church was signing in and we had to convince the nurse to call back to the charge nurse to let us in ... (they don't let visitors go in and out when there are doctors doing their rounds and when the nurses are going through the shift change) they let us back when I explained that Olivia was going to be going into surgery soon. ... We waited around for a bit, and before they finally came to get her ready, two other friends from church showed up to offer their support (Susie Duggan and Ingred Lathrop) ... we all waited until they anesthesiologists came (gas-passers) and then we had a prayer ... They wheeled her off to the OR and we all went downstairs ... Jeff had to \ leave ... (our prayers and thoughts are also with Mr Booher and family who lost his wife Celinda suddenly this past Friday) Susie and Ingred stayed with us until Dr Cox (our surgeon) came out to tell us that everything had gone well and that so far she was responding well to the surgery. We are now in another state of readiness and watchfulness for the next week as she adjusts to the new flow of blood from her heart to her body and back to her heart and to her lungs ... they will probably be able to ween her off the O2 level that she is at and off the diuretic meds and some of the other heart meds too. She will also then be extubated (yay!) and have a C-PAP for breathing and then eventually just he nasal canula (sp?) and then just herself. ... this will take a few more weeks for sure. And we will be able to find out if there are any other serious lung issues or if this will take care of it all. ok, that is it for now ... I need to sleep and get ready for another day.
— until such time, Andrew
Sara and Andy both have been as tolerant and as good as could be expected during all this, and we even managed to have a decent Christmas. ... Heck, it even snowed on Christmas Eve here in Sugar Land!!! we played with some friends down the street and made snow balls and had a nice time. In the morning it was not nearly as pretty as it had started out to be the previous night, but it was still quite a sight for this part of the world. If we had driven down the Sw Freeway to Wharton we could have played in about a foot of snow!!! unbelievable for south Texas for sure.
So, last Monday was supposed to be the surgery day, and they saw that she had an elevated white blood cell count, which signaled infection ... so they put it off and started antibiotics again ... they figured later that week that it was probably a fairly routine and minor infection that she had been exposed to previously. Maybe Thursday or Friday for the surgery then ... close, but no. We were getting a bit tense to say the least ... the longer they wait the greater the chance for her to get sick from just being in the hospital. But, on the plus side, the pressure in her lungs also went down a bit each day ... which was good ... But, then someone thought that she should have more formula in her feed since she was doing so well ... the downside here was that she became stressed a bit with more fluid in her stomach and she had a tough time passing it through.
SO, we finally were set for Monday January 3rd 2005 the very day that she is 4 months old. 4 months and maybe 3 weeks of actual time at home. So, Adrienne got up and made it to the hospital and Olivia's bedside by 5:30 am and I made it up there by 7:30 am to be ready to see her off to the surgery (it was supposed to be one of the 1st ones) we saw some of the doctors and we were waiting for it all to begin. ... Oh, yeah, when I went to sign in Jeff McDonald one of our pastors from church was signing in and we had to convince the nurse to call back to the charge nurse to let us in ... (they don't let visitors go in and out when there are doctors doing their rounds and when the nurses are going through the shift change) they let us back when I explained that Olivia was going to be going into surgery soon. ... We waited around for a bit, and before they finally came to get her ready, two other friends from church showed up to offer their support (Susie Duggan and Ingred Lathrop) ... we all waited until they anesthesiologists came (gas-passers) and then we had a prayer ... They wheeled her off to the OR and we all went downstairs ... Jeff had to \ leave ... (our prayers and thoughts are also with Mr Booher and family who lost his wife Celinda suddenly this past Friday) Susie and Ingred stayed with us until Dr Cox (our surgeon) came out to tell us that everything had gone well and that so far she was responding well to the surgery. We are now in another state of readiness and watchfulness for the next week as she adjusts to the new flow of blood from her heart to her body and back to her heart and to her lungs ... they will probably be able to ween her off the O2 level that she is at and off the diuretic meds and some of the other heart meds too. She will also then be extubated (yay!) and have a C-PAP for breathing and then eventually just he nasal canula (sp?) and then just herself. ... this will take a few more weeks for sure. And we will be able to find out if there are any other serious lung issues or if this will take care of it all. ok, that is it for now ... I need to sleep and get ready for another day.
— until such time, Andrew
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