So the last time that I posted was that our PT had noticed a slight regression in Carter's left side and thought that he had plateaued. Well Webb and I decided to call his Neurosurgeon and get a consult and I am sure glad we did. The Friday before Christmas Carter had a sedated Brain and full Spinal MRI.
That afternoon Dr. Boop's nurse called and told us that Carter's shunt was not working and they needed to schedule surgery. They gave us a couple of different options and we chose the morning after Christmas. All went ok over the weekend, we had a big family Christmas and Carter had a blast playing with his cousins. Monday, Christmas Eve, we had Christmas at Meme and Poppi's house. Carter had so much fun and got so many awesome presents! Well that evening after putting him to bed he kept telling us his tummy hurt and was crying for us to stay in bed with him. I was laying beside him in bed comforting him. I told Webb to go and grab some tylenol he came back and went to get Carter a drink and at that moment Carter screamed his tummy hurt and started projectile vomiting. He also became lethargic for about a minute.
Luckily my parents were only 2 minutes from my house so as soon as they got here we headed straight to Lebonheur. We were there several hours and eventually had a CT, X-ray and Lab tests. They all came back that his shunt was obviously not working, but that he was stable so they let us go home for Christmas day(we actually got home about 5am Christmas morning).
Uncle Hunter took such wonderful care of Carterman and Carter is such a ROCKSTAR in the ER.
A couple of pics from Christmas morning. We were all exhausted with little(me) to no(webb) sleep- so this is about as good as the pics get ;) Even though we were so tired we had a wonderful Christmas at home with our family. We spent the morning with my family and the afternoon with just us 4 and had a quiet evening of regrouping and packing.
We had to be at the hospital at 5am on 12/26 for surgery at 7. Little man is such a trooper. He had 3 IVs in a couple of days and NEVER cried!! I can tell you that People think it gets easier with every surgery or shunt revision, but I can tell you IT DOESN'T!!! It SUCKS sending your baby to be put under- knowing he is going to be in pain when he wakes up, that he is scared and there is nothing you can do to take it away. BUT we have done such a wonderful job of being completely honest with him and explaining everything in concrete terms of what he is going to feel, if it is going to hurt, make him feel funny, etc. And it makes a HUGE difference for him. He trusts us.
His incision looks just like a candy cane. He woke up in pain and flushed and irritable just like every surgery. We chased a fever and pain with Hydrocodone and Tylenol and eventually after about 12 hours he was feeling better and fever was gone.
and we were discharged home the next morning. WOOHOO!!
Brothers- Back together again and Loving Life.
That was until Saturday night. I was at work and it was the end of my shift- Webb and my sister were blowing up my phone while I was giving report but I figured he was calling to let Carter tell me good night. I was leaving much later than normal. When I walked off the floor and Called him back, his exact words were "Hey, um Carter and I are in an ambulance pulling up at Lebonheur, Carter started Projectile vomiting at home, became lethargic and unresponsive for 1-2 mins. Bridgette is with Cohen. Get here as soon as you can."- I felt like I couldn't breathe. My mind was spinning in circles. In fact I got lost on the way to Lebonheur, even though I know how to get there, then my window fogged up and I turned on the windshield fluid and it froze over my window. I had to pull over on the interstate and let it unthaw. I was freaking at this point. I finally got there- after what seemed to be 2 hours(actually prob. 10 mins). He didn't even know I was in the room for the first 5 mins. He was in such as daze. After about 5 mins he looked around and said "Hey, look mommy is here." They ran all the necessary test and admitted us to the Neuro floor. The neurosurgeon came in first thing in the morning and said he was scheduled for surgery around 9 that his scans were unchanged to the ones before the last revision and his shunt wasn't working AGAIN!!! He did much better leaving for surgery this time. They were able to give him Versed prior and put him to sleep before they took him. and we waited.
Imagine our surprise when we walked into the recovery room to him eating a green popsicle. He always wakes up slow, fussy, in pain! always! Not this time. They extubated him, said he sat straight up and requested a green popsicle. This surgery was different than all the others. He NEVER was in pain, no flushing, no irritability and no fever. crazy!! He felt great!!!
Much needed nap with daddy after surgery.
and going home again the next morning. We are PRAYING that this shunt #7 is the lucky one!!!!
We were also told by Dr. Boop that unlike most kids with shunts Carter has a large Spinal Syrinx that complicates things. He does not present like most kids with a shunt malfunction. A slight change in motor function could mean a non working shunt. This is so scary bc if it swells to fast or too long, it can cause permanent nerve damage. I am so thankful that Webb and I are so on top of his care and that we know the right questions to ask or when something doesn't sound or look right. I am so glad we stuck to our gut and got it checked out. As parents we have learned to NEVER look past something and always listen to your instincts. Love you sweet boy!!!
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