Wednesday, December 2, 2009

Contemplating the Impossible to Fathom

John is on yet another round of antibiotics for a central line infection. This time he is actually on similar meds as last time but the bugs are a bit more tenacious and nasty. One of them has a reputation for becoming resistant during treatment and so this time he has to have a clean culture before he can come off the antibiotics completely. Throughout this infection John has looked pretty healthy and has done quite well but we all remember well the days when John's central line infections rendered him very ill indeed and no one who was there can forget how close we came to losing him from sepsis and just how awful that sepsis is on a little body. At one point during his worst sepsis episode he was swollen almost beyond recognition, his heart was so weak that he had to be kept sedated and medically paralyzed because each time he woke up he would nearly die because he would get upset with all the tubes and wires and such. No one wants to see John have to go through sepsis again, nor any person.

John's gut is having a very hard time getting itself in gear. When he is on IV antibiotics he is doing well and his g-tube feeds can advance to the point that it looks as if he will soon come off the TPN and be able to get rid of the central line. Shortly after being off the IV antibiotics the bacteria in his gut go bezerk and he stops being able to tolerate feeds at all. We are one more time trying to get the bad bugs in his gut under control so that feeds can go on again. This is a more aggressive attempt than we have ever seen and while we have hopes that it will work we have an equal amount of fear and worry that it won't. John has never had great motility in his intestines and because of that he has places that bacteria can camp out and do bad things, who knows if antibiotics will be able to touch them there.

At John's last IRP appointment in Omaha the doctor told us that it was time to start considering a transplant evaluation for John. They are not giving up on IRP (intestinal rehabilitation) but if John's gut won't pick up and work there will come the time that damage from TPN and danger of a central line infection that won't be able to be handled and will lead to sepsis and possibly death will become greater than the risk of transplant. At the time that John was born the neonatologist told us that because of his dual diagnosis of short gut and prune belly that John would never be able to receive a transplant no matter how bad one was needed. Dr. Mercer, from Omaha, explained that in the 6 years of John's life many things have changed and that these rules are no longer so cut and dried. These 6 years have brought many advancements in intestinal transplant as well and as I look around on the internet and read everything I can find it seems that intestinal transplant is no longer the 'kiss of death' and is getting more successful with each passing year. The survival rate for 5 years out from transplant is now 60%, frankly when talking about my kids life that doesn't seem like much, but then I make myself remember that is over triple the chance that he was given to ever leave the NICU alive.

We have agreed to the transplant evaluation, this is basically a fact finding mission to see if John needs and is elgible for a transplant. We were told that this doesn't obligate us one way or the other, nor does it mean that the IRP team will drop him and not try to continue to care for him. Scary stuff indeed, but then I read things that tell that children with successful transplants have a quality of life that is the same as that of their peers. My mommy heart wants to scream NO and hide in the farthest corner holding on to John as tight as I can to make sure that he never leaves me but when I put my selfish inclinations aside and look at this from the stand point of what is best for John I realize that if he needs a transplant and if he is elgible for one that a successful one is really his best chance at freedom. Over the past couple months that John's gut has been misbehaving and that he has been receiving full nutrition through TPN we have seen John make huge strides in his maturity, his muscle control, his signing, his expressive language skills, his everything, and when I look at it objectively I know that these strides are there because he wasn't struggling for nutrition. Who knows what John's brain and body could accomplish if it wasn't daily fighting for enough nutrients to get by.

So I contemplate, I wonder, I worry, I pray, in the end I know that it is Christ's hands that John has been in all along and that I too rest in those hands which leads me to pray for wisdom that Mark and I will make the best decisions for John.

4 comments:

Anonymous said...

hi Gina-
I posted on the yahoo group in response to your post there. ((((((hugs)))))

Lori
lucky mom blessed with triplets
including Braden with short gut +
www.caringbridge.org/visit/bradenwild

Ewe said...

So glad you posted, I was wondering how John was doing. We pray for John every night and the boys want to know better how to pray. I don't do Facebook...

Gina said...

Thanks Lori, I've been reading more than posting, just dealing mentally with all this stuff.

Rachel, thank you, and I knew I was missing someone on facebook.

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