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

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