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
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