Urgent Prayers for 4-Month-Old Baby

CelticGrace said:

We haven't had official 'rounds' yet but the two cardiologists came in because Finn's X-ray was even worse today. They wanted to take a look at his chest tube because he only had 5 mls that drained yesterday. Sure enough, the tube was twisted so they fixed it and flushed it and a pretty decent amount of fluid came off. They also did labs this morning and everything looks alright.

Plan for today is he NEEDS to eat more and drain more fluid and we really need to keep an eye on this tube to make sure it doesn't twist. So, for now, Finn is having a 'diaper day' so that we can see the tube better and monitor it. The entire time that Dr L'Ecuyer and Dr Michael were fixing the tube, Finn had his hand on it Dr L'Ecuyer tried to get Finn to hold his hand instead but Finn preferred the chest tube. What is it with babies and children in general only being interested in boring items like tubes and wires!? I have every toy imaginable in his wagon.

No more X-rays unless Finn shows that he needs one or if we have a chest tube concern. Have a great day!!!!

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CelticGrace said:

There will probably be another update when I get home from church, but for now

Good morning!!! Finn had a great night of sleeping in his wagon! I'm still trying to get an exact number for you on fluid output and how much he ate but he is a happy little boy.

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CelticGrace said:

Dr L'Ecuyer and Dr Michael came in this morning to talk about Finn's progress. He had 70 mls of chest fluid output and his labs are getting worse. He hasn't moved forward but he hasn't moved backwards. We have been treading water for too long. So today, Finn will need an NG tube and we will begin feeding him through this so that he can begin to grow and thrive again. This will also be the final test to see how the increased fluid intake effects his chest tube output before we think about a PICC line. But as usual, don't worry guys, Finn's got this! He is as happy as can be and we will have another week filled with smiles from Finn, meeting new nurses and doctors and welcoming baby Nora and Savannah back to UVA for their heart surgeries at the end of the week!

We are surrounded by such amazing families, talented doctors and amazing nurses.

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CelticGrace said:

And a third (more than we usually get on weekends, since those are usually "waiting" days)

NG tube is in and Finn is NOT happy. He also had an X-ray but then, he got a visit from Daddy and big brother Mason!!!! We had a good day!

Mason loved looking at all the cars out the window and when nurse Stacey put the NG tube in, she attached it with a piece of tape that she cut into the shape of a heart.

Finn is asleep now. I had Michael bring up the rock and play so I'll try that out in the hospital!!

Happy Sunday!!!

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CelticGrace said:

Happy June!

Happy June!
Finn slept beautifully and had all of his meds. He only had 10 mls of fluid drain overnight. The tube doesn't seem to be twisted or clotted. He did partially pull out his NG tube overnight so nurse Alex had to put it back and then order an X-ray to be safe and everything was fine. This NG tube doesn't stand a chance

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CelticGrace said:

He really is lol Yesterday, Kelly was celebrating the fact that Finn's third chest tube had actually lasted a whole week!

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CelticGrace said:

Sweet angel. What a day! An adventure this morning followed by such great news from Aden + Anais AND I even have more good news coming that I can't wait to share!! Finn is sleeping soundly but he was pretty uncomfortable today. I think he is starting to realize how much he doesn't like this chest and NG tube combo!

Thank you all who purchased a bib or onesie for the heart fund. I personally have used this fund before in times of need and it's such a blessing.

Lamby got a bath today (SO needed!) and I even got to go out for ice cream with another heart family! I hope to share their story soon!

Finn's plan tonight is pretty simple- eat and sleep He also needs to be rocked for 15 or so minutes every three hours to circulate his chest fluid build up to allow it to drain. I doubt he will have a problem being snuggled! Team Alice, Alex & Emily will take good care of him!

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CelticGrace said:

Apparently Finn & I share a birthday lol

Good morning. Finn slept well and the rocking really helped his chest tube output. He had 40 mls of output overnight. I'm not sure what the grand total was for the 24 hours. He also had NG feelings every 3 hours but he threw up once. Shannon and Alex put him in a cute nautical outfit.

Today is Finn's five month birthday!!!!!! I can't believe it's been five whole months. He has been so worth every tear wether happy or sad, every sleepless night and every since hospital stay. So much has happened over the past five months but he continues to smile, make me laugh and just love no matter what.

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CelticGrace said:

I went to high school (and according to a mutual friend, middle school) with Kelly, but she was two years behind me, so I never really got to know her. Our mutual friend is the one who brought Finn to my attention

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CelticGrace said:

and an update:

Outfit number 3 today as Finn hasn't been keeping much down. His body isn't used to taking in all of this food and his stomach most likely shrank over the past 6 or so weeks of limited intake. But, he will get there!

This morning, Finn got an X-ray because surprise, surprise, his chest tube looked like it was coming out. He has pulled about 1/2 of it out but we are still in the clear (for now). Sorry Jimmy!!! And no, I have no clue how he is doing this, lol.

We just had rounds and his chest fluid output over the past 24 hours has gone up to 90 and the theory of why it has gone up is because we increased his feeds which is not good. This means that everything that he is taking in is what is indeed causing this fluid output. The team pretty much said PIC line but they want to talk to the entire cardiology team and radiology to figure out how we would do this and when.

I asked how long it would take once he is on TPN with the PIC line for us to be able to tell if it's working and Dr Kim said that we should normally be able to tell after about a week if it's going to be the final answer to the fluid production. If it is the answer and it's working, the length that he is on TPN will basically be up to Finn. His chest tube would still be left in assuming it makes it that long.

You've given this such a good run Finn!!!!

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