Well, my excitement over a good nights rest was certainly short lived 😩. After a pretty good day on Tuesday, I figured he would be able to sleep pretty good again on Tuesday night and we could get a lot of things accomplished on Wednesday…boy was I wrong.
The mysterious fever from Monday night came back again on Tuesday night. It was still considered just a low grade fever but it was slowly trending upwards toward a “real fever”. Poor little mister was MISERABLE and despite being given Tylenol and Motrin around the clock to try to keep any post op discomfort at bay, we still had to resort to giving him something a bit stronger to try and help him relax and to dull the pain. I hate having to give my child narcotics (no matter how small the dose is they are still narcotics) but even more than that I hate seeing him in pain. He was still pretty miserable overnight, despite the pain medications so neither of us got a whole lot of sleep to say the least. Guess is should have been more grateful for the full night sleep on Monday huh? In talking with the pediatric team of doctors and in speaking with his neurosurgeon a little bit on Tuesday during the day, it sounds like they are leaning toward something called aseptic meningitis, which is basically inflammation in the area surrounding the brain and spinal cord. I guess this can be common after invasive brain surgeries like Everett had, and the only thing that makes it any better is time and managing the pain. Please, if you are praying for our little guy, say a prayer that this passes quickly and that we are able to appropriately manage his pain. It really is so hard to see him so miserable and not to be able to fix it for him.
Because of the fever however, the pediatric team here at the hospital needed to do their due diligence and rule out any other potential causes for the fever. So for the second day in a row, we spent the majority of the day in “quarantine” while we waited on various test results to come back saying whether or not he was infectious with anything scary like the flu or RSV. They also ran a bunch of other lab work to make sure there was not any concern for any other underlying infection. Thankfully every single test that they ran came back within normal ranges, that is great news because having a bacterial or viral infection so soon after major surgery could potentially be very dangerous.
The highlight of our day was when our sweet friend Kelsey from Child Life came by with surprises for Everett. I had mentioned to her (during my particularly emotional day on Monday) that I was so bummed that Everett will be spending his 2nd birthday in the hospital. For those of you that know us well, you know that we had to have a much much smaller version of his 1st birthday party last year because he had just been diagnosed with Infantile Spasms and was still on such mega doses of steroids that we couldn’t risk him getting sick. Our plan this year (you know before COVID19 and his seizure relapse) was to throw him the most amazing Sesame Street themed birthday party, because if you know Everett…you know Sesame Street is his favorite! Well with everything that happened, we obviously had to cancel his party and I know he won’t know the difference but I do, and it made my mama heart sad. Imagine my surprise when Kelsey walked in with a birthday toy, a beautiful handmade blanket and the cutest box filled with Sesame Street goodies so that we can throw him a birthday party still. It was just such a sweet and thoughtful gesture in the midst of such a difficult time.
Hopefully occupational therapy will be by on Thursday to finally do his swallow evaluation. Im sure getting this tube out of his nose will be a huge step in the right direction. Please pray that he will be able to stay awake and have no problems passing this evaluation. I’m sure this poor little guy would do just about anything for a chicken nugget right about now!
We love you all, thank you for your continued thought and prayers for Everett and our family.