Friday, August 17, 2012

One more night!

Hi friends,
I apologize for the lack of updates over the last several days. We only have one lap top and Brian needed it for his new job (PRAISES!) and first day of classes (HOORAY!).

As you can imagine, the last several days have been quite busy for our little family. Here is an update of what happened over the last few days:

- For a brief time the surgeons were hopeful that one of the radiologist would be able to place Jude's feeding tube (in his nose) down into his intestine (also known as TP) so that they could bypass his stomach and continue to feed him with formula. They were hoping that an especially skilled interventional radiologist would be willing to attempt placing the tube, however, that particular physician is out of town for 3 weeks. And sadly, none of the other radiologist were willing to attempt placement because Jude's stomach is in such a unique location. We were quite bummed that this did not work out. We'd really prefer that Jude could be fed with formula until his next repair surgery.

- So, because Jude needs to have good nutrition to help him grow and remain healthy before surgery it was decided that Jude would get a PICC line placed so that he could receive TPN (total parenteral nutrition/IV nutrition). On Wednesday, Jude received his PICC line and over the last two days he has been receiving all of his nutrition from TPN. TPN is not our top choice for our little man, but really this is the only way for him to continue to receive nourishment to help him grow.

- Since Wednesday the pharmacist has been implementing a plan that will allow for Jude to receive his TPN for 16 hours a day. The remaining hours of the day will be spent disconnected from his TPN. But working up to receiving TPN 16 hours a day is a process. Jude little body has to show that it is "okay" with receiving his nutrition over a compressed amount of time. Thus far he has passed every test with flying colors! Yay!

- If all goes well with Jude's little tests to determine if his body can handle the TPN 16 hours a day, then he will go home sometime tomorrow (Saturday)! We are thrilled that we can bring our little guy home. This hospital stay was very unexpected and lasted MUCH longer than anticipated.

But what about the new hole in his diaphragm, the re-herniation?

That is a tough one. Here are a few more bullets to explain the situation...

- Dr. Hebra (Jude's loved and amazing surgeon) is on vacation this week. He has been in contact with all of the doctors caring for Jude and is carefully considering the safest and best path for Jude's 3rd repair. There are several "ideas" on the table about what will be the best way to repair Jude's diaphragm and he is seriously wanting to make sure that Jude will not re-herniate again.

- Right now the goal is to give Jude good nutrition and help him grow bigger and stronger. For how long? We aren't sure, but we are planning on getting an answer to that question from Dr. Hebra when he returns. It could be next week...a few weeks...a month, we aren't really sure. But we want to be sure that it is the right and best time for Jude to face such an invasive surgery.

- Will this repair be different than the last two? Likely. There are a few options that are being considered. Jude's CDH and GI anatomy are so unique that his repair is not as straightforward as we would like. In fact, Dr. Smith (the attending surgeon that was covering this weekend) said that he, Dr. Hebra and the other surgeons were attending a conference in the coming weeks at which they hoped to present Jude's difficult and unique CDH repairs and re-herniation. This conference will be attended by many of the top US surgeons. Basically, our little man's insides are complicated. So complicated that our surgeons want to consult all the "big dogs" about the best way to help Jude. We found this both reassuring and scary.

So, how is Jude's life different now?
- Well, he has a PICC line in his chest at all times. He will no longer receive formula through an ng tube in his nose, instead he will receive TPN in his PICC line. It will be difficult for us to manage at first, but should be pretty straightforward after we've been doing it for several days. But the hope is that this will be a very short solution until surgery to repair his diaphragm. His PICC line has to be handled very carefully and we will need to be extra vigilant about preventing any infections. Please keep this in your prayers!

- He still has an ng tube in his nose (a much smaller one now). This ng tube will be used to give Jude two of the medications that he needs. Unlike his other medications these two medications cannot be given to him through his PICC line so they must be put into his stomach through an ng tube. Please be in prayer about this too. It is currently very difficult to place Jude's ng tube (and it's even harder to make sure that it is in the right place) because of the location of Jude's stomach (in his chest). Caring for his ng tube may be a very tedious task and may require us to visit our local hospital anytime the tube comes out or needs to be changed.

What will stay the same for Jude?
- Jude will be back at home until his next surgery. He will still receive all of his therapies and will continue to try to eat by mouth.
- He will continue to have several doctors appointments at MUSC and he will still be wearing his awesome blue helmet.
- He will be loved on just the same (if not more) by his big sister who has missed him a TON this week.
- He will continue to amaze us with all he can do despite the huge challenges he is facing!

Thank you for all your prayers and continued encouragement. Thank you to all of you who have cared for us while we've been in Charleston caring for Jude. It has been hard accepting that Jude and our family will be facing an even longer journey...but we are tremendously thankful that the Lord has blessed us again and again during this season of our lives.

Please keep praying...we will keep updating you on our sweet little man!

P.S. If you have a little extra time to pray...will you join us in praying that our house in Simpsonville will sell soon?

1 comment:

  1. I will pray for all of your concerns. That's wonderful that a plan for Jude can be discussed among the top surgeons.