Thursday, June 25, 2009

Healing and adapting

Many of you know this through phone calls, Facebook, and emails, but Kevin has been feeling much better the last 2 1/2 days. It seems the surgeon's gut was right. The prior shunt's flow was definitely slower due to the cap in the valve being clogged up. After replacing the cap, his flow sped up and his body was reacting to it. Now it appears he's adapted to the proper flow, as he's been up and around and no longer nauseated. Dr. Sood is somebody I have a lot of respect and appreciation for, to say the least. He did Kevin's two major surgeries, which was the inital external shunt (was done immediately to alleviate pressure in his brain due to hydrocephelus) and the tumor resection. We insisted he was the surgeon working on Kevin last week. He was kind enough to call both Rachel and I back on fathers day evening (a day he had off) to answer all our questions and concerns. We're very thankful to have the combination of St. Jude for protocol and Dr. Sood for surgery.

Also, today my sister's close friend Tracy Filak chaired a fundrasier at Black Finn bar and grill for St. Jude. Was a good time, and obviously a great cause. She did a great job with the event.

In closing I'd like to thank Betsy and Tabby for coming down 90 minutes from Saginaw to be with Kevin the evening before, and the day of surgery.

I may not post again for a bit, so I hope everyone enjoys the 4rth of July Weekend.


Monday, June 22, 2009

Recovering period

Kevin's had some pretty rough side effects since his surgery. All he wants to do is lie down. When he moves he quickly becomes nauseated. Rachel brought him in on Friday, but the shunt was in working order according to CT Scan and a Shunt Tap. However since then, he's continued to get more and more tired. I saw him today for Father's Day, and after not seeming him since Thursday he looked beyond fatigued, and laid down on the couch, even eating on the couch for Father's Day. No big deal, since I sat there right next to him on the couch and ate with him. We've been in touch with both his Surgeon and St. Jude. The surgeon is saying there's a good chance it's a flow problem, since the failed shunt was flowing much slower. The new quicker flow may be making him feel sick, and hopefully will subside by mid this week. St. Jude wants us to be proactive (which we were already on Friday). So Rachel's keeping a close eye on him, and if he's bad tomorrow she's going to bring him in. I'm pretty hopeful it's what the surgeon said, but you can't be too careful.

Wednesday, June 17, 2009

Shunt Revision - Round 1

Kevin and Rachel (Dr. Mominator) before surgery in the Operating room.

{I am saying round one because this is probably not the last time the shunt will need to be revised before Kevin becomes an adult. But shunt failures are serious and life threatening so it is not to be taken lightly but this feels so much more manageable than cancer to me.}

Yesterday I called the Neuro Surgeon ( who removed his tumor last year) to tell him I was concerned Kevin's shunt was beginning to fail and listed his symptoms like nauseated on and off, having small bouts of throwing up and headaches on and off. Not headaches like when he had a tumor though. He was getting car sick and he doesn't normally get car sick. Dr. Sood said to bring him into the office as soon as I could. Shortly after we arrived at Children's Hospital yesterday they did a CT scan and x-rays but everything looked normal to the nurse who was evaluating him. On the CT scan it showed his right sinus cavity full of fluid so she thought the headaches could be from the sinuses and just as she was getting ready to send us home with the all clear when Dr. Sood just happened to get out of surgery and walked by the room we were in. He pulled the nurse aside outside of the room and upon his return felt Kevin's shunt on top of his head and ran through the symptoms I had talked to him about earlier in the morning. He said it felt to him that the shunt was at the beginning stages of failing because it wasn't popping back up after he pushed on it the way it should. Same thing I had noticed at home. He sent us home telling me to call if he stays nauseated.

The whole way home Kevin was nauseated. I called the Dr. before we even pulled into the driveway to tell him I wasn't comfortable at all just letting the shunt fail completely when we can fix the problem early.

Dr. Sood, as normal, was great about returning my phone call quickly and said he would put Kevin in for surgery the next day.

Kevin is already a man in so many ways. He has handled this with maturity way beyond his years. Right now I am sitting next to him in the hospital bed and just a few minutes ago he turned to me and said, "I love you mom. Thank you for taking me to the hospital and paying attention that something was going wrong with me." I am so honored to be his mom.

Thank you for all the prayers and well wishes. As difficult and scary as this whole health scare has been the last year and a half, there have been many silver linings, many amazing blessings, and many opportunities to see the hand of God working in our lives. Sometimes bad things happen and if we are lucky we come out better for it.

Much love,

Kevin with Grandpa an hour after surgery today.

P.S. I forgot!! The surgery went well. It took less than an hour. Kevin now has a very small wire coming out from the shunt area monitoring the pressure in his brain to make sure the shunt is working correctly. Kev woke up in a pretty good mood for just coming out of anesthesia. He has been up watching TV, already read 2 books and trying to eat but his taste buds are a little off. He will hopefully get out of the hospital tomorrow afternoon/evening. He is certainly low energy but is in good spirits. He has to come back next week to get the sutures out and for a check up.