Curb your enthusiasm........

I know its been a while but so much has happened and Thurston is still always on that roller coaster, we just cant seem to get a break when it comes to his stability, I just didn't feel much like writing because things just change too quickly. I have also been depressed on top of being severely sick(all three of us caught what I can only assume was the plague) and we also had a theft from our home so its just been a hard couple of weeks.

The hardest and most depressing thing for me that happened actually happened to a friend of mine(well two friends of mine). I met her through a preemie group and we have been going through this very hard roller coaster together when we first emailed each other over 6 months ago. Our babies were due around the same week in June and without going into details, her baby who was still in the NICU, just passed away. My heart is breaking as I write this. To go that long, to fight that hard, and both her and her child and her family have been through more than anyone can ever imagine, including me, and to have lost her sweet dear baby brought me to my knees in tears. She was part of a trio on that message board, referring to ourselves as the three amigos. The other mom of that group also lost her baby a couple of months ago. These ladies were and still are my rocks. They are stronger than I could ever hope to be. I love them with all of my heart and they remind me everyday how lucky I am and there is no room for whining or complaining on this journey when so many other people have to endure so much pain and loss. My heart is still breaking for both of them and I will never forget their children and hold them very close and deep in my heart forever.

On the Thurston front, I will go back about a week. He seemed to have been doing ok oxygen wise after his surgery maintaining at 6 liters at around 80 percent oxygen. But in a matter of a days, he climbed up all the way to 10 liters. We are very lucky that Dell has the ability to administer CPAP like pressure through the nasal cannula as it is so much more comfortable for Thurston and 10 liters truly is equivalent to him going back on the CPAP. They actually did put him back on the CPAP for a day but he just didn't tolerate it very well and kept taking it off as he is just too big now and can manipulate everything with his hands. They were THIS close to putting him back on the vent but the doctor did not think it would do much good anyway. Thurston is still an enigma to everyone. He still does not present like a baby who has a severe case of chronic lung disease( oh he has a pretty hefty case of it believe you me, but it just isn't as severe as his saturations shows). His respiratory rate is still very normal. He does not look like he is struggling to breath but yet his saturation dipped into the mid 70s and that is not good for long periods of time. Finally the steroid question popped back up on the table. This would be his 4th round of Dexamethasone which already has its risks but we always seem stuck, like we have to ask ourselves. "we either risk the dexamethasone, or risk him dying" Those pretty much have been our two options with Thurston at least on 3 out of the now 4 occasions we have used it on him. The good thing about the steroid is the bigger the baby is and the older, the less the risks of the steroids use. Doctors were using it on neonates when they were first born and for 2 to 3 months straight at high dosages in the 1970s and found out that it caused developmental delays etc. So the new studies from what I have read(and trust me I have researched the HELL out of Dexamethasone as well as talked to Several mothers who have also had to use multiple doses whose kids are older now who seem to not have any ill effects from it) seem to be a bit more mild(slightly lower IQ and smaller in size) and when the choice becomes whether my son lives or dies, YES those are MILD risks trust me. There are never ANY easy choices on this journey, but when it comes to life and death, the choice HAS to be that easy.

So he started back on the Dex about a week ago and I know how giddy everyone will be when I tell you he is now down to 2 liters of oxygen at 80 percent. BUT WHOA NELLY NOT SO FAST. We have just been down this path before. The only other time he has been that low was in July, after his 2nd round of dex. It did last about a month until he aspirated in August and where we almost lost him AGAIN. So I am going to CURB MY ENTHUSIASM for now and wait until he tapers off of the Dex and stabilizes. We don't know where he will end up once he is off of the Dex and how far he might rebound back up to. They are also not sure that a tracheostomy will help/hurt him(the surgery and afterward is GRUELLING and at this point could be more harmful than helpful according to one of the doctors...again it does not cure him it just gives him a different port to breath out of). The other thing is I talked to the doctor yesterday and they had done a ct scan of his chest, his first ever. I know you would think for a kid that has chronic lung disease um why had they not done this before. Well he just always was too unstable. But the pulmonologist was pretty shocked to find that his lungs, albeit definitely showing scarring and showing lung disease, was no where near as bad as they were expecting. So they are now thinking that it might have something to do with his heart which is what the very first pulmonologist said when he first came to Dell. So now they are trying to schedule some further testing, a bronchioscope, which they just don't think they will find anything from that as they don't think it is an airway issue, and a heart catheter, which I am more nervous about as this is a risky procedure, but they think they might find something that is causing his saturation levels to constantly be low even though he is not breathing hard. They are also puzzled as his blood gases always look pretty good as well which is another thing they would NOT see in a kid who had very very severe lung disease. So I guess there are some pockets of good news, riddled with pockets of puzzles and mysteries that have yet to be solved.

In the meantime, we have been so sick that we have not been able to see Thurston in over a week. I can guarantee that this nasty nasty cold that has draped our house would have most definitely killed him, and I am serious when I say that. I was up last night thinking about how scary it will be when he comes home and how even just a small tiny cold, let alone what we just got would be life threatening to him. But then I stopped myself....live in the moment Donna, live in the moment. There is no sense worrying about what isn't yet. Gotta just keep living day by day, worry about only what I need to right now, keep the sanity going. So I will both Curb my enthusiasm but also Curb my fear too and just continue to plod along, trying to be strong for my son, daughter and husband, and be forever grateful that we are still on this path, however shaky and uncertain it may be.


I know Natalie

I know Benjamin