Saturday, February 28, 2009
I can imagine that some of you have questions as for as the surgery and about Gavin and our family in general. Please feel free to ask them. It's going to be a boring weekend and Adam and I have plenty of time to do a little Q and A.
Friday, February 27, 2009
Baby steps -- that's what I keep telling myself. Gavin is doing well and making progress. It's interesting how at one moment an attending can come in and Gavin looks so bad and worries them, and then the next hour another doc will come in and Gavin is laying there trying to change the DVD in his player. I think He is messing with our heads. He is still on so many pain meds which include Dilaudid, Valum, Toradol, Nubian, Benedryl and Tylenol -- but they seem to be doing the trick. He is still spiking fevers up to 103 but we are thinking at this point that this may be due to his hyperinflammitory issues.
I was able to sleep over at the Ronald McDonald House last night while Adam spent the night at the hospital. Everyone keeps asking if I as able to sleep -- obviously they don't know just how tired I was. As soon as my head hit the pillow it seemed like it was 5am. I showered and rushed back to the hospital feeling a little more "with it".
Concerns still involve the edema on his side and also his hypertension, which may be just due to pain. We are really hoping to move up to the regular floor within the next few days.
Thursday, February 26, 2009
Lets pray for a nice quiet evening here in PICU room 17.
Gavin is looking really good. If it wasn't for the pain I'd be asking to go back to the floor. His belly looks amazing -- I have to remind myself that he just had organs removed. This video is yesterday -- this is one of his better moments.
****This video does show Gavin's belly -- just so you know.
Wednesday, February 25, 2009
We did talk to the surgeon who said he would put back in Gavin's previous gtube for me. Right now he has a mic button, which everyone seems to love, but I love the peg tube and so does Gavin. In fact Gavin keeps trying to find his tube and it's not there, which has him frustrated. His PEG tube has become a source of comfort for him -- weird I know, but so true.
Respiory wise he is doing great he was able to be extubated last night and is not requiring any O2. Fluid wise he is not doing so good. His labs are a mess this morning and he is very dry in his vessels yet leaking most of his fluid in his tissue and now the huge empty space in his belly. So this plan today is to give him more albumin and lot of fluid.
I hate the ostomy. I hate the new gtube. Just want to put that out there.
Adam went back to RM house late last night to get some sleep to that he can relieve me this morning for a few hours so I can shower.
This just really sucks.
Really, really sucks.
I'm ok, just need to get some sleep.
Tuesday, February 24, 2009
To be very honest -- we are both very scared right now. I'm not so sure I was prepared for the post op period. He looks so terrible, the sickest I've ever seen him. Please pray that they can get his pain under control.
***3:00 Update: They are attempting to do the enterectomy via laproscopy with six incisions. The laproscope is in and they are beginning to tie off the blood supply down at the colon and work their way back up. He is doing well. There is a chance that they will need to open him up, but we are hoping to avoid that.
***4:15 Update: Gavin's large bowel and part of the small bowel is out. They still need to take out the colon, gallbladder, make the jejuntostomy and then place a new femoral line. They are thinking we have at least two more hours. Thanks for your prayers. If they are able to pull this entire thing off using the laproscopy it will be amazing! Thank you Lord for technology.
***5:00 Update: Gavin is doing great! All the intestines are out and they are currently working on the colon. They were able to do all the "cutting" or resection of the bowel outside his body, which drastically drops the risk of sepsis after surgery. We are all feeling pretty good, just ready for this to be over. This is great therapy for me to process everything they come out and tell me -- and is passes by some time. Looks like we still have 2 hours to go. Can't wait to see my little boy!
***6:30 Update: Oh that colon! Seems to be giving them a hassle -- might be a little longer, still have quite a bit of work to do. They say he is still doing great! I think we may try to grab some dinner soon, we'll see if my nerves actually allow me to eat it.
***7:30 Update: Gavin's colon is now completely out and they are working on the gallbladder. I was told this portion takes about an hour. After the galbladder they will pull the jejunostomy out through one of the laproscopic incisions and then rewire his fem line. We are getting very tired. Almost done.
***8:30 Update: Seven hours later and Gavin is done!!!! They are in the process of placing an epidural type form of pain control. We will be headed to the ICU and I will be sure to update in the morning. We thank you from the bottom of our heart for the prayers and support you have given us.
Monday, February 23, 2009
Sunday, February 22, 2009
Tomorrow my grandmother will be having surgery to repair her broken neck, please pray that all goes smoothly and she is able to regain some feeling in her body. We believe God can do it!
Saturday, February 21, 2009
Until Next Time...
Friday, February 20, 2009
You all are simply amazing. I know I say that a lot, but your kindness has completely touched our lives!
Thursday, February 19, 2009
Wednesday, February 18, 2009
You all are amazing and the love and support we are receiving through this site is almost overwhelming. Thank you all so much!
Tuesday, February 17, 2009
Monday, February 16, 2009
Sunday, February 15, 2009
Saturday, February 14, 2009
Friday, February 13, 2009
Tuesday, February 10, 2009
Thank you God!
Friday, February 6, 2009
Wednesday, February 4, 2009
Tuesday, February 3, 2009
I'm praying everything goes smoothly. People keep reminding me that Gavin will be the first child to use Omegaven for his particular issues and to not get my hopes up -- well my hope are way up already. I just want to see him grow. I know this is not a cure for his illness but I really believe it can at least help a little bit.
As for Gavin cultures -- has had three consecutive positive cultures of the yeast so we need to wait another day and see if we get another negative. If so then we should be able to go home soon! He is still not himself and his liver numbers and way up since bringing him in -- we'll see.
Thanks so much for your prayers.
Monday, February 2, 2009
Sunday, February 1, 2009
Thanks for your prayers -- keep them coming!