|Would NOT sit still for the obligatory photo|
It was a morning riddled with anxiety and exhaustion. Ty has had an increase in secretions ever since we came home from the hospital on Friday. His breathing is very “junky” and he was only able to sleep maybe two hours total last night because of it. Of course, I emailed his nurse at Sloan Kettering and told her we needed to bring him in, but first I wanted to get Gavin off to preschool. Poor Gavin can never have his day. We had to drive all the way into the city after dropping Gavin off, and we spent the entire day in clinic where Ty was accessed, given oxygen, suctioned, cultured, etc. As we drive home right now he has a consistent, rumbling cough that is so congested I am sick to my stomach over it. It is constant, he is too weak to cough it up, and he is in misery. We were sent home with more antibiotics, a nebulizer and a suction machine so we hope this will help his condition until whatever it is passes. In the meantime, if Lou and I don’t get some sleep tonight, we might lose our minds.
The Shunt: Where it all began
So, where did Ty’s downward spiral begin? It’s hard to say, but one thing is for sure… Ty has had an abnormally rough road by any standards. It’s simply miraculous that he is still with us, and it infuriates me that he still suffers so much. He just can’t catch a break. It hurts me so bad (emotionally) that it is almost unbearable, but I keep it together for him and I rarely shed a tear because I can’t let my boys see me upset.
|Post op, craniotomy #2, externalized shunt to be replaced days later|
Out of the 20 surgeries Ty has endured in two years, ten of them involved the placement or revision of a VP shunt. His first shunt was placed just three days after his very first surgery. When the surgeon removed the tumor original endoscopically, he broke through the dura/meninges, which is a membrane that separates and protects the Central Nervous System from the rest of the body. It is like a wall, and on the other side is where the cerebral spinal fluid (CSF) flows freely. We were warned how dangerous it would be if this happened. The CSF fluid needs to be isolated, to remain free of exposure to ANY bacteria within the body, and the fact that his surgery caused bacteria from the nose and the mouth to travel into the Central Nervous System, we were told it would almost certainly result in an infection.
Of course, they patched the hole in the dural wall, but they needed to keep the pressure in Ty’s head at a bare minimum so that the patch wouldn’t be compromised during the healing process. The painful lumbar drain that was already in place was not adequate and prone to infection, so we had no choice but to to agree to shunt surgery. In the beginning, every surgery like this was devastating. We worried about if he would be able to play football with a shunt in his head, or even roughhouse with his brother. Later, when they suggested a g-tube we were dead-set against it until we had no choice. All of these things, we realize now, have saved his life.
It hadn’t yet been confirmed, but Ty was suffering from MRSA meningitis at the time of the follow-up surgery to reinforce the patch and place the original shunt. His entire central nervous system was septic, and in the weeks to follow Ty suffered worse pain than any migraine. He couldn’t move, he couldn’t have any light in his room and he required a 24-hour morphine drip. Not a drop of food or water entered his mouth for three weeks, and he was put on TPN. He ran non-stop fevers for weeks on end. We had to wear gowns and gloves just to enter his room. To touch him. He couldn't bear for me to even hold him for at least two weeks (the photo below was my favorite moment - finally he came into my lap). Every single day I prayed for a turnaround, and it felt like an eternity before he started to feel even a little better.
|FINALLY in my arms again|
Herein lies the issues with the shunt. Any hardware placed in the body is very “sticky” and bacteria harbors in the plastic like a parasite. Since the shunt was exposed to MRSA (a very powerful and deadly bacteria) we knew it would have to be replaced, but that wouldn’t be possible unless he was cleared from the infection for several days/weeks before placing a new shunt, and after we lost so much precious time recovering from the infection alone, we were advised not to delay chemo another minute.
The decision was to keep Ty on antibiotics for the course of the first chemo cycle or two (that way, the infected shunt would not continue to infect the rest of the central nervous system). It was not the safest route, but we had to do it in order to be most aggressive against the tumor. That meant I had to hook him up to an IV pump of vancomycin every six hours for MONTHS. It is very complicated what happened over the next few months in treatment, but the bottom line is that poor Ty contracted meningitis again (this time it was fungal as opposed to bacterial) and the shunt was finally replaced three months after it was originally placed.
The downward spiral continues from here. Ty suffered chronic hydrocephalus which left his brain tissue scarred and means he will forever be shunt-dependant. Ty suffered several clogs in his shunt because the original infections left his CSF fluid prone to build-up with proteins that stick to/collect in in the tubing/valve. Each time causing painful, life-threatening hydrocephalus and replacement surgeries. He also contracted several more infections of the Central Nervous System when his immune system was so compromised during treatment. Each time an infection was contracted, the shunt needed to be replaced. His cancer metastasized and he needed to have each shunt replaced after those tumor resection surgeries. His most recent surgery was simply because the skin where the last shunt was placed was just too thin after being re-opened and operated on so many times. Can’t. Catch. A. Break.
|Post-op shunt revision #6|
So, that’s the story. The Shunt, the shunt, always the shunt. It is a necessary evil in this journey, and I am keeping my fingers crossed again. Ty baby has four huge incisions that are healing, and he is pretty banged up, but what I’m more concerned right now is his breathing. It’s dreadful. He sounds like an anti-smoking commercial and we don’t know whether it’s an increase in secretions from the anesthesia post-op or more. We will have to keep doing what we’re doing… torturing the poor boy with the suction all night… and praying it gets better soon.
|Post-op, shunt revision #10|