Little Straws: July 2011

Where should I begin...starting early Friday morning Elliot threw up copious amounts of breast milk during a middle of the night feeding. After cleaning him up he was back to true Elliot form trying to get us to play with him at 3am. Laying in bed with him we noticed that his shunt track was full of fluid (cerebral spinal fluid), which Elliot has had that problem before but his shunt track has looked great since May...so we called the Neurosurgeons in the morning and they filled us in that the fluid collection is normal when an infant throws up due to the increased intracranial pressure and as long as Elliot was still acting his normal self, not to worry right now and just to monitor him. All weekend little boy was especially cuddly and extra fussy. We attributed this to teething since all he has done in the past week is chomp on his hands and anything in sight and in our defense we are new parents and have no idea what teething looks like. Almost all the signs of a shunt malfunction are similar to the flu, teething, etc. Then Sunday morning Elliot threw up copious amounts again and after he threw up he was super sleepy and just not acting quite himself so we called the Neurosurgeons once again. This time they told us to bring him to Children's ER for a check up. Once we got there, in true shunt malfunction form, we were seen right away. Elliot had an X-Ray done and then they told us that he needed a CT Scan, now Elliot has never had a CT Scan, we only have had MRI's completed on him and we just didn't want to submit him to radiation if it was just the stomach flu. Since Elliot was still quite alert and not presenting any other signs of malfunction they decided the best plan of care would be to skip the CT Scan and just to have us call Monday morning and make a same day appointment and an MRI. So we headed home for a LONG LONG night. Elliot threw up again that night and everytime we laid him down in bed he would just whimper, we didn't know what was wrong with little boy. At 7:15 Dr. O'Neill, who is Elliot's Neurosurgeon called and asked how our night was and then if Elliot had a fever, which he didn't (when kids have a fever it typically means they are sick and its not a malfunction) and he said that it would be best if we get to Children's as soon as possible. Ok...now if any of you know me, I am a planner and that whole night while not sleeping I was planning what I needed to take care of before we went to Children's...and now I wasn't able to do any of that. We left the house with wet hair, throw up all over our bed and bag that only included underwear and t-shirts, hahaha, our brains weren't working quite right.

Once there Elliot got his MRI and then we went right up to see the Neurosurgeons. The Nurse Practitioner came in and said that she was going to pull up his June 3rd MRI and his newest MRI and she wanted Byron and I to make the call on whether or not his shunt was working. Well...it was obvious, his ventricles were much larger and fluid filled in the new MRI, which meant a Shunt Malfunction...not what we wanted to hear. Immediately they scheduled an Urgent Shunt Revision at 5pm and Elliot was admitted. Doesn't give you much time to process...and again, I'm a planner...

We spent the rest of the day in a private room at Children's awaiting surgery. Elliot slept on our chests most of the day and he had trouble waking up. He would wake up give a quick smile and fall right back asleep. He had his IV placed at 3pm, which was absolute torture and then off to surgery he went at 5pm. Needless to say, those were the longest 3 hours of our lives, AGAIN. At least last time, I was so doped up on pain medication from the C-Section I didn't notice how long the surgery took, haha. After about an hour went by the anesthesiologist came and gave us an update...he started by saying, "well you have a very well fed child", haha, he was having a heck of a time finding Elliot's veins to put in a better IV port and he wanted to let us know that once we saw Elliot, that he would have some battle wounds from his IV placement. Jumping forward...we counted this morning and between his feet, groin and wrist Elliot has about 33 poke marks and he's all black and blue...BUT at least he was OUT when all this was happening. Ok, so after the surgery was completed, Dr. O'Neill came out and told us how the surgery went. He discovered during the surgery that the valve inside the shunt body was malfunctioning and not letting fluid flow which could have been going on for awhile, but also some brain tissue was clogging the end of the catheter that went into his ventricle. So Elliot had his whole shunt replaced, he no longer has a programmable shunt, they placed a fixed shunt instead...so no more worries about magnets or his setting being wrong...You know one less worry of the other million I have. He said Elliot did great though and was already awake and breathing on his own...music to our ears.

After about another 1/2 hour we finally got to go back and see our little boy. He was screaming hungry but awake and alert. He nursed immediately which was a wonderful thing...Elliot hadn't really eaten more than a few minutes in 24 hours and lets just say I was in a little bit of pain. He nursed like a champ and when he was done he shot his dad a quick smile. It was amazing, that we could see the change in Elliot so immediately. We went back to our room and snuggled him lots and then he slept most of the night...good for him, but we didn't sleep much at all. Elliot kept kicking his oxygen monitor off his toe which set off alarms all over, haha. Oh well, we will catch up on sleep later.

In the morning, all the neurosurgeons came by for rounds and let us know that after Elliot completed his round of antibiotics that he could go home that night. AMAZING that a baby can have brain surgery and be home the next night. During the day Elliot finally started to drool and pee again, he was so dehydrated that he wasn't even drooling anymore, who thought we would ever miss that drool. It was a long day in his room, he had two IV's, one in each arm which meant that Elliot couldn't suck him thumbs, but because it was so difficult to get an IV into him they wouldn't take any of them out in case one fell out on accident. I was a little frustrated by this...UNTIL, Elliot chewed on his one IV so hard that he pulled it out on his own. The little stinker had blood all over his face and was a mess. So now we were down to one IV and we had 2 hours to go until discharge. Byron and I had to sit and pretty much restrain him for 2 hours...not a happy camper, but we just really didn't want to put him through the procedure of getting another IV. After he finished his last antibiotic at 4, we packed up and headed home. Elliot slept great last night, he got up at 4 and wanted to play, haha, but it was great to see our little boy back to his usual self. His shunt track looks GREAT and we couldn't be happier with the results and how quickly he has bounced back. We survived our first shunt revision!! I was hoping he would never need a revision and especially so soon but we survived and now we have a little better of an idea of what to look for AND now we REALLY know that a shunt malfunction is WAY different from teething!