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) :

"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

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 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