We graduated ISR
"That SMILE you get when you graduate ISR! This 3 year old has come a LONG way! So proud of your ISR self-rescue swim skills Adelina!"
Friday, October 9, 2020
Monday, June 22, 2020
We're out!
We're out!!! We left Thursday for a "weekend hiatus," her x-ray actually looked worse than it had the day before. She was so sick for two days and then we hit our stride and turned a corner on Sunday. Best surprise ever, we didn't get readmitted today!!! Her x-ray looks better, so we're lowering some medications. If everything goes well, Thursday we are going home!!!
I forgot to add two of our miracles! No oxygen and no feeding tube!
Sunday, June 14, 2020
Doing better
Adelina update - two days ago her chest tubes were removed, yay! Today's x-ray looks a little better than yesterday, seems small but is HUGE!
We did opt for a feeding tube as one of her many medications makes her nauseous and she has to be on a fat-free diet for sometime (it's tricky). We're hopeful that each x-ray will look a little better.
We expect to leave with oxygen and a feeding tube, but the highlight is that there is a good chance we'll leave the hospital this week (we'll still be close by)!!!
Thursday, June 11, 2020
Post op day 21
Yesterday was one of our best days yet! Adelina had energy! The fluid around her lungs looks about the same as Tuesday which is fantastic that it's not increasing.
Monday, June 8, 2020
Surgery cancelled
Adelina update - surgery has been canceled, she needed a specialized anesthesiologist and they weren't available! And it's a blessing! We're going to take out her PICC line because we don't think that she actually needs it because the fluid she was draining isn't Chylus (yay!!!). They would have put her on octriotide for a week and she wouldn't have been able to eat or drink hence the PICC line, but octriotide only solves Chylus.
Today's goal is to consume enough calories that we don't need a feeding tube.
Sunday, June 7, 2020
Two steps forward, one step back
Adelina update - we had surgery again on Friday because our chest tube was coming out, in true Addy fashion, instead of replacing that one she came out with two. We learned that instead of the typical one pocket of fluid, we have several and we don't know if any are connected, this makes it very difficult to drain. Plan A through E have been tried, one is in progress, G happens tommorow. They will be putting TPA in her chest tubes. She also had a PICC line placed Friday (yay for pain free blood draws). Unfortunately, it was too deep so tomorrow it will have to be replaced.
Thankfully, we have had many tender mercies. Addy made a little friend, August, and he has made her days. He got to leave today but his sweet family left her with such thoughtful gifts and good memories.
*Our tower has grown since this picture was taken. We are now back on oxygen and getting our nutrition through TPN and lipids. She is allowed to eat fat free foods and 800mls of fluid but she's not eating enough.
Wednesday, June 3, 2020
Day 14 post Fontan
Adelina update - this girl is a rockstar! We are post opt day 14. We had another surgery Monday to replace a failing chest tube to remove Chylus.
Our days are filled with walks, trike tours, scavenger hunts, play room time, physical therapy, little people, my little ponies and now playing doctor. Let's not forget the X-rays, EKGs, blood pressures, blood draws, meds, echos and visits from several medical professionals.
We are praying for her lymphatic system to heal so we can take out this chest tube and for her heart to stay in sinus rhythm. We've been blessed with so many tender mercies.
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