My oh my. Parson didn't have a very good day. She started struggling to breathe just after lunch, then at 5.30 this evening she vomited while having a spell and rapidly desat'ed to 45. She was gray with blue hands/feet. They were able to stabilize her in PCU, then rushed us back to PICU. We narrowly escaped another intubation. Currently she is stable, smiling & playing. They suspect she aspirated. She gave me quite a scare. I felt like I was in one of those crazy episodes of ER. Meanwhile I am getting older by the minute!
With all of these events, we have good news and bad news.
The good news is the doctors have moved Parson over to high flow oxygen which seems to be helping to provide positive pressure that her little lungs need. The bad news is that she cannot come home on high flow oxygen. So essentially right now we are rolling on a spare tire. Unfortunately the spare tire won't last forever so we need a better option.
Our only option to come home is for Parson to get a tracheostomy. It sounds like a really scary option - until you don't have any other options. This would also help us buy some time before a transplant. The doctors are also concerned because Parson is very low on the growth scale. She is using more calories to breathe than she can take in. So no matter how many calories we pump into her, she is burning it up. They have also discussed giving her a g tube while she is in surgery. This would give us a chance to "fatten her up" by providing extra calories at night while she sleeps.
The details haven't been worked out on the surgery yet, but it will more than likely be sometime this weekend or early next week -depending on the surgery schedule. After surgery, Parson will remain in PICU for 5-7 days. Then back to PCU for approximately 2 more weeks where she will heal & we will be trained to care for the trach.
I read a GREAT verse this morning and after the dramatic day - I know EXACTLY why.
"The Lord will fight for you; you need only to be still.” - Exodus 14:14
Sometimes in the midst of the chaos, in the midst of the crisis, in the midst of growing older by the minute - we just need to be still. It is so comforting to know that I don't have to fight -- cause this Momma is tired.
Thank you Lord for fighting my battles. I will be still.
Many prayers & love being sent UP tonight!
ReplyDeletePraying for your precious one...and for the strength you all need. I am sorry for the stress you are feeling...but I am so thankful she has you fighting for her...with God leading the charge. A dear friend of mine went through much of what you just wrote about as far as the trach and g-tube are concerned. She became essentially a trained nurse in the process...and I would only imagine that you are beginning to feel that way already. Her son outgrew the g-tube and the trach...and is now doing things many said he would NEVER be able to do. I only mention it in case it gives you a little glimpse down the road for your precious baby. Big hugs...big prayers...and sending you all lots of love. - Donna (Lewis) McCAnn
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