Friday, February 3, 2012

We checked in at the hospital Wednesday morning for the surgery to place the ommaya reservoir in Collin's head. Everything went very smoothly. As always, I requested to be able to escort him to the OR and stay with him until he was asleep. This kept Collin calm and cooperative, and eliminated the need for pre-medicating him to keep him calm.  The surgery went quickly and without complications, and Collin woke up from the anesthesia quickly. He was a little agitated at first because he was hungry. He ate some pudding, and then begged for chicken soup. The PACU nurse got a kick out of that-he said he's never had that request before! Once Collin had his soup, he was much happier. He was then moved to the Same-Day Unit to be observed for a few hours. Originally they were going to have him stay overnight for observation, but since he was eating, playing, and acting normally and didn't seem to have any pain, they let us come home.







Wednesday evening Collin had a low grade fever, but we were told that was not unexpected after surgery. I gave him Tylenol as directed. At around 12:30 Thursday morning, Collin was asleep one minute and projectile vomiting the next. His fever was higher despite the dose of Tylenol an hour and half before. The fever was not quite high enough to meet the neurosurgery protocol for calling after hours, but it was high enough to meet the oncology protocol for calling after hours. I decided to call neurosurgery first, but the person I spoke to wasn't concerned, saying a fever and vomiting was normal and to call back if I couldn't wake Collin. I wasn't comfortable with that though since I know how quickly things can happen in someone who is immuno compromised, so I called the pediatric oncologist on call. He told me he would feel better if they checked Collin out, and was going to have us come into the hospital. He called the hospital to make the arrangements, but then called me back twice, once to tell me there were no open beds and that I should take Collin to the ED, and then again to tell me the ED was backed up by 75 people and that I should keep Collin home and keep watching him, and that unless things got worse overnight, Collin could be seen in the clinic Thursday morning. Thankfully, the vomiting stopped and his fever slowly came down, so Thursday it was decided he didn't need to be seen in the clinic. We went to his therapy appointments instead, and he ended up having one of his best speech therapy sessions yet! He was saying his words really well, was participating enthusiastically, and kept making us laugh. His humorous streak continued in occupational therapy, and it was a really fun morning. 

This morning when Collin woke up, the right side of his face was so swollen that his right eye is almost swollen completely closed. I spoke to the neurosurgery fellow who knows him, and although she's surprised the swelling didn't happen until today, she said swelling after surgery isn't uncommon. Collin's ommaya reservoir was placed just behind his forehead on the right side, where the neurosurgeon could use the burr hole/canal made from the external ventricular drain in 2010, so the swelling is most likely just related to the surgery. As long as no fever develops and the swelling doesn't increase, she isn't concerned about it. Hopefully it will subside in the next few days.



We also finally have the schedule for the CSF flow study that has to be done in NY. The second half of February is going to make my head spin. We will be in State College for THON (which is as important as Christmas to us, so we don't want to miss it) from February 17-20. On the afternoon of the 21st he has an MRI in Hershey, and then that evening we will have to travel to NY. On the 22nd he will be put to sleep, be injected with a radio tag dye, and have a scan. Then on the 23rd, twenty-four hours after the dye injection, he will have a second scan, also under anesthesia. I'm not sure if we will be able to come home that same day, or if we will have to meet with the doctor on the 24th before we are able to come home. My parents arrive from Texas the evening of the 24th,  and then we will travel back to NY on the 27th so that Collin can start treatment on the 28th. We're not yet sure what day that week we will get to come home.

After reviewing the treatment plan and deciding the treatment is medically necessary, our insurance carrier has agreed to cover it. We are relieved and thankful because the estimated cost we were given for the treatment, which does include worst case scenarios that hopefully won't happen but would help make the cost so high, was over $400 K. Our wonderful friends are still proceeding with fundraising plans to help cover our travel/lodging/food expenses, and because we still don't know what the future holds as far as what treatments Collin will need, but at least we don't need to raise anywhere near $400 K right now! Thank you again for any amount that you are able to contribute, no matter how small. Your help, and your prayers, are very much appreciated!