Yesterday and last night were EXHAUSTING which is why there hasn't been an update. Yesterday, Alexander's cardiologist muttered the word: Fontan. The word we didn't want to hear yet-Fontan. Alexander needs his Fontan, however, the pressures in his lungs are to high for that to happen. To add, the doctors didn't find any real reason (I believe they really thought there was an explanation) for Alexander's desaturations, besides that he needs the fontan and that a few collaterals were coiled.
The procedure itself went well. He came back to the CTICU on oxygen but as of now, he is off. He slept most of the afternoon and into the night. He woke up at 10 pm and was awake until 2 am. He then fell asleep but woke up at 5 am because of vitals, followed by a chest x-ray, and then a blood draw. He never fell back asleep until his nap (which was later that morning).
Today, we moved to CV Acute; No more ICU! Alexander has been looking great and not requiring much oxygen unless he becomes active or angry. He had one low desaturation when he was playing today but only one because he was only given one opportunity. This afternoon, one of the NP's on rounds said Alexander may be discharged tomorrow. I don't see this happening, as we have no idea where his oxygen baseline is and I'm not comfortable going home not knowing. So hopefully tomorrow there is more of plan to work toward getting Alexander home. Once home, Alexander will need to get bigger because he needs that Fontan and we want him bigger. Bigger means stronger and stronger means shorter stays in the hospital!
Fontan- a surgery we knew was coming but weren't prepared to hear that it needs to happen sooner than later. I don't like the word and I don't like the thought of Alexander having to be back in the hospital within a short period of time, to do it all over again.
Prayers for our Superman. Praying that he stays strong, keeps fighting to beat CHD and that we get many more answers that we want to hear- soon! <#
No comments:
Post a Comment