Maddie had a pretty rough 24 hours after they took the chest tube out. today we spent most of the day watching her struggle to breath, unable to rest, destating into her 40s, turning purple, then blue and then gray before being resuscitated back to struggling to breath. she wasnt ready to have just one chest tube and proved it.
around dinner time, they ruled out all other possibilities and decided to reinsert the chest tube. but because she has weird anatomy on the left, including a newly repaired diaphragm, it took a whole surgical team to put it back in. she got 'pig tails', a slightly smaller, more flexible and more comfortable chest tube. she immediately dumped out 80 ccs of fluid from the left, confirming that the tube was very much needed. she is now resting and we will shift focus back to weaning on the ventilator and preparing her for her first meal (hopefully thurs or friday).
our bible study is fasting tomorrow. i dont really understand fasting, but i know that God says 'some things' require prayer and fasting and that Maddie's health falls into the category of 'some things'. please pray, hold up those that are fasting and, if you feel called, join them.
today was a very scary reminder that she is still sick and fragile and only alive by the grace of God through modern medicine.
Hi again- Its Janet Shepherd from the cherubs support group- Ive been following Maddie's progress and thinking of you guys.
ReplyDeleteIm sure you are very busy so no worries if you cannot get back to me, but I am headed to San Francisco this weekend to carry out the last few weeks of my pregnancy before our baby is born with CDH (due date Sept 3). I hope your Maddie gets to go home long before she has the chance to meet our baby in the NICU, but wanted to offer any help should you need it.
We chose to deliver at UCSF instead of here in San Diego since the doctors there see so many more CDH cases.
I have plenty of appointments lined up at UCSF over the next few weeks and wanted to say that if there is anything I can do or anything you need brought to you don't hesitate to let me know.
I will continue to think of Maddie and your family and wish you all the best for her recovery!
Feel free to email me for anything wrightjanet44@yahoo.com