Wednesday, August 11, 2010
a grain of salt and a pound of hope..........
The other day I told one of the nurses that as much as we were always trying to get out of the NICU, I told her I would be ecstatic to still be here next month, because that would mean my son will have fought his little heart out and won, it would mean that eventually I will get to take my son home no matter how many days or months we spend here, to me that just doesn't even matter anymore, I just want my baby to be OK.
Right now there is not too much to update except now they think Thurston does not have pneumonia, just really crappy lungs, in fact Dr. Breed said Thurston's X-rays look better than ever and he is more perplexed than as to what happened. His best guess is that he was probably hit with a very powerful Virus, as they have tested every bacterial infection known to man, they even have an infectious specialist working on him, and although some have grown on the cultures, they truly don't believe that any of those is what actually caused his illness. He is still on almost 100 percent oxygen on high oscillator settings. We just need to wait and see how Thurston will do. Its all up to him.
A couple of days ago Dr. Breed told us he really wanted to do a lumbar puncture(spinal tap), which they would have done earlier on but it is really hard to do with a kid who is on the oscillating vent and especially for one who is so unstable. He was pretty stumped especially with Thurston's seizure activity, and thought that maybe Thurston might have gotten meningitis. They did a head ultrasound and found no brain bleeds and cannot do an MRI because he is so unstable so he wanted to "fill in some of the puzzle pieces". We felt that the benefit outweighed the risk, as Dr. Breed said that although Thurston was already put on antibiotics to cover meningitis from the get go just in case, he might be able to tweak the antibiotic therapies if they could determine what kind of strain it was.
Now every step of the way, for some reason, I tried to always prepare myself for the worst. Since the moment they told me he was going to pass away in my womb(of course they told me 99.9 percent sure at that point that he was not going to make it), to when he coded the third day, to when they told me they fully expected to find brain damage on his 1st through 6 head scans, to a high possibility of being blind, to not making it through the night at 4 weeks old etc. etc. Every step, I just assumed the worst would happen so that I would be "prepared" if it did.
I FINALLY DECIDED TO STOP THAT!!!!
I looked at all of the evidence behind me.....this kid is a damn tough little BUSTER!!!!!! He truly has surpassed every ones predictions. I also thought to myself after the first few days of this new crisis, "if my son does die, will it be any worse or better if I "prepared" myself for it". Seriously think about it. I will be just as devastated if he dies whether or not I sulk around for the next couple of days or not, whether I worry myself sick, stay up all night vomiting, not eat or sleep, grind my teeth into oblivion, research a million stories on the Internet etc. Can you really prepare yourself for the death of your child or any of the other things that might possibly happen to them. Sure its good to know all of the possibilities, it is the doctors job to lay all of the proverbial cards out on the table but it is up to me how how take in that information and process it. So I tried a little experiment.............
Doctor Breed told us that meningitis could be the possible culprit to Thurston's illness and also explain his seizures. Now I could have gone home and been crushed. I could have gone home and sulked, cried, pouted, worried my head sick especially as to what a horrible blow that would be, the brain damage it could cause, I know first hand what meningitis can do to a child, it is pretty devastating. But instead I decided to do something Chad has been doing this whole time...........simply wait and see; and not only that I did the opposite of what I have always done, I actually said to myself, "he does NOT have meningitis until they tell me he does" yup I decided to actually hope for, dare I say it, the best possible scenario. Guess what. I was actually in a pretty good mood, I actually ate dinner, I played with Viola, I actually felt normal. I decided I will deal with meningitis if and when I am told he has it......
Drum roll please and forward to the next morning when we got the news..........no meningitis. Boy I thought about all the wasted negative energy I would have poured in to myself, the mother I would not have been for Viola or Thurston for that matter, the strength I would not have given my husband had I sat and worried all night about a prognosis I had no idea would or would not come to fruition. Dr. Breed is now even more stumped than ever but he said"well it definitely makes this much more puzzling but I would rather it be puzzling than for your son to have a brain infection".....yup me too.
I decided to deal with his 50/50 chance of survival the same way. In reality, when the docs have NO idea whether a kiddo is going to live or die, they place this random statistic on it. So when people have seen me this week they look at me at first with devastating eyes and then puzzled eyes at my new found strength. Instead of grief or anxiety, my eyes are filled with hope. I told Dr. Breed that I know my son is in critical condition, but he is still alive, he is still fighting. That me trying to "prepare" myself for something devastating is not going to make it any less so if it happens. It has taken me a long time to get to this place, a place of hope and courage and strength I never knew I had. This journey has allowed me to evolve in ways I never thought possible. I am not giving up on my son. He needs me to be strong for him. He is still here. I cant believe it took me this long to finally be in this very healthy place. Trust me if I am dealt any bad news, I will be devastated, you will not be able to peel me up from off of the floor, but unless I get a 100 percent diagnosis, not some random statistic thrown my way, I will take it with, as Pliny the Elder concocted oh so long ago, "a grain of salt"and Ill add a little dash from my own new found spice cupboard, "a pound of hope".