Hello everyone,
Sorry it really has been awhile since I sent an update. Things got just a little hectic, and frustrating. Unfortunately we would end up taking our frustrations out on each other (arguing) which is never any good...Anyways, so here is the most up to date on Baby Gabriel
A few weeks ago the ICU doctor wanted to do this last resort surgery for Gabriel, because they have no more treatment for him, as they have done everything they can do for him. The surgeon was consulted and he was scheduled for this surgery however the ICU doctor and surgeon unfortunately were on 2 different pages leaving me in the middle to choose. Icu wanted a different surgery from the surgeon, Icu wanted the right side done (draining more fluid) the surgeon wanted the left side done, Icu wanted to pursue the surgery, surgeon wanted to wait. In the meantime the surgeon sat me down (3 hours before surgery) to explain the risks, pros/cons and he would come back in an hour so I can tell him my decision as to go through with the surgery or not.
Now to go over everything the surgeon said, the procedure he wants to do is a 50/50% risk it will get fixed, he said flat out from the get go that he wants to wait to see if Gabriel will heal himself as he has seen it be done in weeks/months (months scare me). He said he may not be able to fix the hole as it is microscopic and there is risk he wont find it to fix it. On the other hand he may find it by luck and fix it, except the pressure may find another place to go to drain in his body (not so good). I wish I could say this decision is so easy to make, but is so hard to decide when everyone says this is their last resort. Needless to say the Icu doctor walked in that day, sat down next to me and told me the surgeon was not going to do the surgery regardless of what we decided. I am not going to force a surgeon to do surgery on my child if he doesn't want to be in the OR already...that was hard.
On to last week...the attending from Icu last week tried to pursue the surgery again, he spoke with the surgeon of course, we were not involved. The outcome was if Gabriel continued draining as much as he was or worse, he would consider surgery this week. If he decreased, they would hold off. We understood tha and was content with that, b/c now we felt like we were going somewhere, and something would be happening. Throughout last week Gabriel's weight was on a rollercoaster ride, sometimes he would gain, and some days he would lose. On April 13th Gabriel's left side healed himself. He stopped on that side...yay!!!! I just wish his right side now would stop.
On to this week...Monday (of course now I am back at work) the surgeon re-evaluated Gabriel and said he would wait again. Last weekend he drainied some of the most, one day 480cc, another 360cc...His average was the same. Of course, I hit my frustration breaking point and went to the hospital to see what was going on. Only to find out the Icu doctor I thought was on our side, she had a conversation with the surgeon that afternoon, and I found out the next day she agreed with him to wait. On Tuesday I asked the day shift nurse if we could have a meeting with the attending Icu doctor and the surgeon (obviously not the same day) sometime so we could kind of all be on the same page, and appearantly she didn't like that answer and called me directly at work and told me she cannot pry the surgeon out of the OR for a meeting (which hit me the wrong way b/c as a parent I have a right to talk to my child's doctor and that the surgeon is). She said if we had any questions we could ask her the next day as she was on call at that time...we were not happy about that at all, and for the first time in the 9 weeks that we have been here I finally felt like we are getting the run around. In the meantime Gabriel is still losing weight. On Monday he was 4.75lbs, Wednesday he was 4.6lbs Friday he was 4.5lbs Yesterday he was 4.4lbs.
I spoke with one of the other surgeons I don't remember his exact words But I think he said Dr. Morgan (Gabriel's surgeon) would do the surgery this coming week. I know he was going to re access him this week (it is week 6 with the chest tubes and the draining) So I don't want to get my hopes up for the surgery, but at the same time not sure if I should get my hopes up if he goes through with the surgery. Now I am not sure what it is I want.
This weekend was a little out of the ordinary as Gabriel doesn't like to follow the medical books, as we all know. His heart rate stayed in the 190's to 200's almost all weekend. Unfortunately during the process of figuring out what was going on, his sedation was increased, he got multiple doses of morphine, versed and ativan all which put him to sleep but did not touch his heart rate or breaths per minute. Everything that would have caused the highs has already been ruled out, so last night they put the suction back on his chest tube and immediately his breaths per minute lowered (yay!!!). Did a stat chest xray and the the pneumothorax(the air in his lung) was the same, so they did a CT of his chest with and without contrast after placing him on suction, and the CT looked slightly better as far as the Pneumothorax goes. His right upper lobe of his lung unfortunately is still collapsed. Gradually, his heart rate lowered and is now from the 160s-180s.
Based on his labs this morning, the doctor is going to consult the Endocrinologist as his cortisol levels are low. So we will see what happens. In the meantime, the nurses are having fun with Gabriel, he has his boxing gloves on and he gets his daily mohawk, which suits him very well, lol. Sorry for the long novel. I promise I try to get better at doing it more often. Thank you again for all your care, concern and prayers. We are very special to have sooooo much supprt from all of you and I can't wait to be able to tell Gabriel when he gets older just how special he is and how loved by soooo many people he is. We Love you all!!!