Tuesday, June 15, 2010

What we have been doing over the last 6 weeks

2 Shunt Revisions, 1 VERY SCARY seizure and LOTS of Dr. Appts!!!

This is why I haven't updated my blog lately. BUT, after seeing Dr. Boop today, Carter's shunt is finally showing that it is working!!! To make a VERY long story short about six weeks ago(the day of the terrible floods) on a Saturday after noon Carter woke up from his nap with a 102.5 fever. I immediately called Dr. Hanson, who told us to go straight in to Lebonheur ER. So we get checked in and the resident comes in and ordered a lot of test including at shunt series, cbci, crp, and neuro consult. Then the attending comes in a couple minutes later and says that he thinks that Carter has a virus and that he is only going to run a CRP. The CRP comes back in the normal range, so he discharges us home. We questioned him before leaving about seeing Neuro and doing more testing, but he thought that it was not necessary. Boy was he wrong!! So out the door we went. On the way out we discussed how we were excited to be going home although did not have a good feeling about it. So just a couple of minutes down the road Carter started PROJECTILE vomitting and started having a seizure where he became totally unresponsive, his eyes rolled back in his head and became totally gray. I have never been so scared and freaked out in all my life!! So Webb pulled a U Turn in the middle of Sam Cooper(ran over a small tree) and sped 90 miles an hour down Poplar and went through 5 red lights to get back.(BTW there was a cop following us the whole time and we had no clue). So I ran back in, completely covered in vomit with a limp baby. Immediately there were several drs and nurses in the room. The same attending came back in and told us that he still thought it was a virus with a febrile seizure(UGH!!!) but that he would order a shunt series and neuro consult now. So a little while later Dr. Muhlbauer's Fellow, Dr. Kimbal came in and told us that Carter's ventricles have quadrupled in size since jan and that his shunt was def. not working. At this point it was about 2am and they scheduled surgery for 7am the next morning. Dr. Boop was out of town, so Dr. Muhlbauer did Carter's revision. After Carter's surgery we just hung out in the room for the day and got to come home the next morning. Carter was much happier after we got to come home. I was so happy to be home, but still pretty shaken up from the whole thing. As a mom and nurse I just keep questioning what would have happened if we would have been home and Carter would have been in his bed when the seizure happened. I know I need to quit doing that, but it is HARD!!!
So the next few weeks Carter was doing OK, just a little on the fussy side, which is not like him at ALL!!! He is usally the happiest baby on the block! So a couple of weeks after his surgery we have his post op visit and every thing goes fine and he tole us that we didn't need to come back for 3-4 months. That same week we had Carter's 15 month check up. First off I want to say that I CAN NOT believe that my child is 15 months!!!! So he weighed 24 and a half pounds which was 42%. He was 29 inches and his head circumference was 49 cm which was up 2.5 cm in 3 months. So right after leaving Dr. Hanson's office I called Dr. Boop's nurse. We were not quite sure if the growth change had occurred before the last revision or if his shunt right now wasn't working. So the nurse called me back and said that she thought that it was probably fine that she would let Dr. Boop know and would call me back either way. So no phone call over the weekend. And no phone call on Monday, which was Memorial Day. So Webb left Monday afternoon for Baltimore for a conference. Well wouldn't you know that on Tuesday morning while I was at work at about 8:30 I received a phone call from Dr. Boop's nurse saying that Dr. Boop wanted to see Carter that Day to measure his head circ. and check him hisself. So Dora met me at his office around 9:30 with C. We waited for over an hour and then he checked him out. He then had a catscan and Dr. Boop walked in and said "Your not going to believe this, but Carter's shunt isn't working!!!!" WHAT????????? I was floored. Not even a month before we had just had it revised. He also told us that he was going to change the location of the shunt and that surgery was scheduled for the morning. And Webb at this time was in Baltimore. He quickly got a flight home and missed his conference (Thank you St. Jude for the speedy flight home) and I went home to get some things together and to clean up a little before surgery the next morning. (Thanks Allyson and Courtney for all the help) I don't quite know what it is, but I have to have a clean house and laudry done before I bring C home after any of his surgeries. I guess its the nurse in me that thinks about all the bacteria lingering around! I guess its also a way to help me deal with the stress of it all. Who knows, but my house was spotless when I brought my angel home! After the house was clean we went to eat at my parents house, before Webb got home and I took all of these pics. This sure doesn't look like a baby whose shunt isn't working does it?

So the next morning we were there bright and early awaiting surgery. Let me tell you as a mom that has had to hand off her baby several times to have surgery, it NEVER gets any easier!!!! After the surgery this time, he was in a lot of pain. We had to give him Morphine twice to help him sleep. Poor baby. But the next day we got to come home. It still baffles me that 24 hours after having brain surgery you get to go home.
These pics are from the second surgery, the day after surgery.

and this is how we found Carter after he came home and went straight to sleep, poor little guy was exhausted!!

The last couple of weeks have been better other than C has been running a low grade fever, which had me a little freaked, but we had our post op visit with Dr. Boop this week and it seems that this shunt in the new location is working. HOORAY!!!! and that he didn't think the fever had to do with the shunt. Just have to monitor him very close to make sure the fever goes down and does not get any worse. BC shunt infections are very bad and if he developed one we would be in the hospital for several weeks. But you can develop a shunt infection up to a year after it is placed, which is a scarey thought! So we are doing better now than we have in the last 6 weeks!!
Oh and I forgot to mention that the day of Carter's surgery was our 3rd Anniversary. I am so thankful for my husband and my best friend. He is my rock and keeps me grounded. I truely do not know what I would do without Webb!! So big holidays in our family have proven to not be such a good thing. Last year on Mother's day we were in Lebonheur for a fever for a week, then Webb's birthday his car gets blown up in our driveway and then father's day our car gets broken in to. I think that we deserve a little break now don't ya think.
And if you are wondering if this has slowed Carter down at all is HAS NOT!!! Over the last couple of weeks he has been thriving. He is finally saying MAMA (which is the best sound in the whole world), his is rolling all over the place, crawling everywhere and FAST!! and has been doing great with his braces. He even started signing "all done" this last weekend after finishing dinner at Cracker barrell!! I am so proud of my boy!!! I love him more than words and it just keeps getting better.
Sorry this post is sooo long, but hope that our next 6 weeks are NOTHING like our last! Thanks everyone for your thoughts and prayers during this hard time.
Love - Court


  1. So glad everything is going well.. I'm praying it continues.. think you have had enough craziness for sure! I can't help but LOVE those hospital pics.. he is just so precious.. and those of him in his crib.. PRICELESS! love you and miss ya.. Can't wait to see ya in a few weeks!! Give him hug and kiss from us! xoxo

  2. What's the bandage on the top of his head? His old shunt location? He's so beautiful, you guys! He's a tough little man. I know you're so proud of him! He picked good parents. :)