Wednesday, September 9, 2009

September 9, 2009

Happy 10-week Birthday Gabe! And yes...I did torture him with a "Happy-10-week-Birthday" song this morning. Poor little guy, has no choice but to just lay there and listen to my totally and completely off-key singing. I also like to torment him with Twinkle, Twinkle Little Star and any other song I can remember the words too. I have to take advantage of my captive audience because every time I try to sing with Kayla she says, "no mommy, don't do that."
We've left you all hanging without any news about Gabe for the last three days. What can I say? Time flys and sometimes by the end of the day we are just plum tuckered out. I don't think I even brushed my teeth or washed my face before bed last night. We have reached an all new level of exhaustion that I didn't know existed. Ok, enough about us...
When I walked into the NICU on Monday morning my heart jumped with joy when I saw Gabe. I was shocked to see this skinny little boy peacefully snoozing away. There has only been one other time in the last 10 weeks that G has ever thinned out this much, and the best part is, he has stayed consistently skinny for the last three days. My son is shrinking! Yippee! The new Dr "B" is now on rotation and he is amazing. I feel so fortunate to have such a fabulous team of people working with my Bubba. The plan for the last few days has been to try and continue to shrink Gabe. Although he now looks like your average full-term baby, he should not. He was born 8 weeks early, has been under heavy sedation for 10 weeks and is not receiving enough food to really fill out, which means his "full-term" appearance is still edema. Gabe's Albumin levels are low again, due to all the fluid still draining from his chest tube (did have two, now only one, due to the left chest tube some how wiggling its way out in the wee hours of the morning on Tuesday). In the past he has received two different blood products, Albumin and FFP, to try and get his levels back up. FFP has always made him puff in the past so pure Albumin has been used the most often. Dr "B" is not a proponent of the pure Albumin and feels the FFP is a better product. I explained our experience in the past with FFP, but Dr "B" wanted to give it another try. This time we started with just one dose, followed by a Chlorothiazide (diuretic) chaser, along with all his normal daily doses of Lasix. Perhaps this is the magic combo because, other than a little puffing in his ears, Gabe did not begin to puff like he has in the past. Becasue he did so well with the FFP trial on Monday, it was decided he would receive this cocktail every eight hours starting on Tuesday. Again I was nervous, but there didn't seem to be much of any change in his puffiness. This morning his Albumin levels were up by .2 and now sitting at 2.2. Dr "B" once read, and has seen over the years, that an Albumin level of 2.4, or above, seems to be the magic number for Hydrops babies in order to get the fluid off. They are going to try another 24 hour period of the FFP/Chlorothiazide cockatil and see if his levels keep rising. Fingers crossed this works and we can get good Albumin levels without creating more fluid retention. One of the driving forces in getting the fluid off of Gabe is the need to wean on his ventilator settings. With Gabe's thick chest walls it's hard for him to breath on his own. The hope is that once his plural effusions (fluid around the lungs) and chest walls "dry-up" we will be able to work towards extibation and Super G breathing on his own. They are also continuing to chip away at G's morphine and versed drips. Today was Gabe's first day to receive any PRN's (extra doses of pain killers/sedation) in three days. Ever since moving him to the Big-Boy vent Gabe has not required is usual PRN's throughout the day. By this afternoon he was starting to show some pretty strong signs of withdrawl so nurse "C" hooked him up with some happy-juice and all was good. They are also working on his hydracortisone wean, which will take place ove a two week period. In the past they have tried to get him off the hydracortisone in a three day period and it hasn't worked so well. They were originally going to wean him over about a 6 week period, but decided to speed it up a bit since he seems to be handling things pretty well lately. He will let us know if any of his weans are too fast. Gabe has REALLY strong non-verbal skills. Gabe's lungs are still full of all sorts of Goobers. Hopefully once he drys-up and is extibated the goobers will go away. One of his many nick names is now Goob, becasue the kid is just so goobery all the time.
Overall, Gabe has had a pretty darn good couple of days. We are still not completely out of the woods, and have no idea how long it will take for the Chylorthorax or the edema to dry-up (there is still a possability they wont ever), but it made me feel extremely postive when Dr "B" told me, on Monday, that he is "frustrated" but not "discouraged" by Gabe, and those are "two very different things." He seems to feel that we can get Gabe through all of this. Only time will tell, and we have no idea what kind of special needs he may have throughout life, but ya know what? I would rather have a Gabriel with special needs then no Gabriel at all.
All of our love to our family, friends and the always wonderful team at LPCH.


Photography by Meghan said...

You are so wonderful!! Gabe is so lucky to have come into such a wonderful family with amazing, strong parents. xxoo

Robin said...

This is news worth waiting for! Great progress kiddo!

shannon said...

what a great journal entry....! It brought tears to my eyes. It sucks that you have had to learn all the medical lingo but boy am I impressed! I love how the doctor said he is frustrated not discouraged....!!