I am writing to you from the PICU. Yes we are down here again, and Im sad to say that this feels more like home than ICS. Skyler has been throwing up for a couple of weeks now and lately it has been getting worse. The stuff he throws up is super thick and its hard for him to get it up, so when he is done he is left sounding really junky and we have had to resort to suctioning him to help grab the mucus from the back of his throat. Anyway, today Skyler seemed very tired and slept all day. We didnt have a good night before that so I slept until about noon (my dad came and watched him while I did....thanks dad) When I woke up I got concerned that he hadnt been awake at all yet. The nurses and even the resident doc said he was just tired from having a hard night and not to worry. I knew he had a hard night, but most of his nights are hard and he doesnt get the best of sleep at night and he still has been awake and active during the days so I was still concerned. As the day went on he still didnt wake up. I kept having the resident doc come in and talk to me because I knew something wasnt right. Again she just told me that he was tired. I didnt buy it, my gut instinct told me other wise. I knew there was something going on with him but I didnt know what. Then about three in the morning (he still hasnt woken up) he was sounding junky so I decided to suction him myself. I got alot of stuff out of him but I also made him barf everywhere. This barf was a darker color and I think he aspirated a little of it so needless to say I started crying because I thought I hurt my child, but come to think of it now I am so grateful I did. I had the nurse come into help me clean him up and when she saw that the barf was a different color she called the doctor in again to look at him. This time she was actually concerned and called in another doctor also to asses him. He just kept getting sleepier and sleepier and wouldnt respond to anything. They then had the PICU doctor come look at him. She said she thought he was having a seizure. She was actually the doctor that was on the night he had his other seizure and she said it looked like he was doing the same thing (minus his blood pressure dropping) so she gave him Mannetol and thats when he woke up. They sent us down for a head CT to see if he had pressure on his brain. The results showed the same thing as his last scan, so that's good that is hadnt gotten any worse. But obviously he did have some pressure on his brain because the purpose of the medicine they gave him was to relieve pressure and he responded well to it.
So now we are back in the PICU and the plan for the morning is to have the neuro docs come look at him and try and figure out whats going on. Obviously this needs to be addressed and taken care of. I was asking the PICU fellow what she thought they might do and she said that one of the options is to put some sort of shunt in. Ugh...that would not be good. A shunt put in and a spleen taken out are two big surgeries that wasnt supposed to be apart of this cancer stuff.
I am just so sad that Skyler has to go through all of this crap. A little four year old should never have to endure all that Skyler has. It just breaks my heart seeing him so sick. I want to be able to take away all his pain and say everything is going to be ok. It sucks that I cant. Why did this have to happen to him and why cant he ever catch a break? Its just one thing after another and its killing me not being able to see the end to this. I love you with all my heart Skyler and I am so proud of you for being so brave...you are my little hero bud!!