Another two week update...

It’s been one of those weeks! Sunday evening, Brock was perfect. Went to bed normal, but we heard him moving around a lot more during the night. He wasn’t crying, but just seemed to not be able to really get comfortable. We left the house around 7:40 Monday morning for a feeding appointment- and he wasn’t really interested in eating during the appointment even though it had been several hours. It makes it difficult to evaluate a skill when you flat out refuse to demonstrate it…and Brock really, really struggled when he was eating (difficulty pacing, eyes red, coughing, etc.). So, they want to see him more often for the next few weeks to hopefully get some of that figured out. But it was downhill from the appointment in all areas- he wasn’t wanting to eat, was incredibly irritable, and around 5 (of course, as soon as the doctors office closed) Brock began screaming and was inconsolable. He would cry until he would cause himself to cough, which would result in him throwing up, and then falling asleep for 10-15 minutes before starting the cycle all over again. It didn’t take long for Brad and I to decide it was definitely worth taking him in to get checked out. We went ahead and drove straight to Children’s- and stood in line with the other hundreds of people. Seriously- I don’t know if it was just because of the ice storm the first time we took him in or what, but this was the first time I’ve ever had to really “wait”. As a parent with a child who was sick and obviously in pain, this was so incredibly difficult to just sit and wait for your name to be called while hearing conversations of people who had already been waiting one hour plus! Brock was taken back for vitals, and we were almost immediately put into a room. Several hours later, (and one very sleepy mom), doctors all came to the same conclusion that it was most likely a virus of some sort, but wanted to keep him for observation to ensure it wasn’t a virus plus something more serious- specifically pressure in the brain. He did have a CT scan, and the third and forth ventricles in his brain are larger- but comparing a CT scan with an MRI gets complicated, so we will have another MRI at the end of the month before our neurosurgery follow up next month. The pediatrician that we had in the hospital (once we were actually admitted) is good friends with our neurologist and gave him a page, so we were able to visit with him in person while we were there. He had some very good news for us. Brock’s EEG from two weeks ago came back….COMPLETELY NORMAL!! While this doesn’t mean that Brock hasn’t or won’t have seizures, it is a likely indicator that he isn’t having them on a regular basis. When we first began seizure medications, he was having about 20 seizures PER HOUR, so the fact that he had zero over an hour and while having both awake time, and sleep time, is a very good thing. Even better, the neurologist is going to let us take him off of phenobarbital! This is our least favorite medication because one of the biggest side effects is extreme drowsiness which typically accompanies severe developmental delays. In all the craziness of another hospital stay, this was very welcomed news. After about 15 hours on fluids, Brock was back to his more normal smiling self, and we were allowed to go home after about 40 hours. He has been batting at his head a lot and still been fussier than usual, so we are hoping he is still getting over whatever he had- but we have been led to believe that a shunt is in the very near future for our little guy. While this should be a very “routine” brain surgery- if that is even a real thing, it does involve signing those scary consent papers, and the shunt doesn’t exactly have a great track record for avoiding failure the first year. With summer coming up, that’s a very scary thing for me. I’m worried about being home alone this summer while Brad is at camp. I stress about the idea of needing to take Brock in and not having him there also. I worry about Brock needing a shunt while Brad is gone at camp where cell service is practically non-existent.  We’ve learned time and time again that we have so many people that we can call on- and we would not survive without that network. The network of people who stop their lives to help us by bringing us meals, helping us do yard work, watching/playing with our kids, sending an encouraging card or text message. They help remind me that there is such a larger picture than the medicine bottles and syringes and EOB’s that seem to overtake my life.

Other exciting news for our family includes the purchase of another vehicle that will fit car seats. Both times we have landed in the hospital, transportation has been an issue since only one of our cars can fit any car seats. Now, Brad and I both can take 1, 2, or all three of the kids somewhere…and it’s such a blessing! Brad can take the girls to school, and I can be first at the doctor’s office. Win, win. 

We've got an MRI coming up, a visit with neurology towards the end of April, and the dreaded revisit with neurosurgery. Please be praying for that situation. I have a good feeling the shunt is in our very near future and if that is what he needs, so be it. He bats at his head constantly and his scalp is full of scabs. I fear that he is in pain every time he cries and I cannot console him. At the same time, signing consent papers for brain surgery is not high on my to do list, and neither is another hospital stay, or meeting our medical deductible with one scan for the rest of his life...more than anything, if this is the route he needs- than I need peace. I need to be able to sleep at the end of the day and be thankful for that day instead of worrying about what tomorrow will bring.

Until next time,

Taryn