Mama Bear doesn’t play nice! Post-Op Day 10

Ok, obviously from the tone of the title of this blog you are probably thinking that today probably hasn’t been the best day ever….and well, you would be right. 😞 Over the past 48 hours Everett has become more and more agitated and seems to be in considerably more discomfort than he has been the entire time since his surgery. I know that based on what I have read and what the providers have told me, discomfort is unavoidable with the aseptic meningitis that they are thinking that he has, but knowing that in my head doesn’t make my mama heart hurt any less to see him in pain. I’ve read that aseptic meningitis can resolve quickly or can potentially last up to 4-6 weeks post-op, please say a prayer that Everett’s will not last that long and that we will be able to find a good balance of pain control to keep him comfortable but not completely zonked out. His fevers are still coming and going but thankfully he hasn’t had any “true fevers” throughout the day today. Praying that this trend continues and we can just focus on controlling his discomfort instead of battling with a fever as well. My poor boy just needs to catch a break, he’s been through so much in the past 10 days.

Our long anticipated swallow evaluation finally happened this afternoon at around 3:00. The speech pathologist that came to do his evaluation was very kind and encouraging. Everett did really great with eating several bites of pudding and not choking on any of it but he wasn’t able to demonstrate that he could drink or swallow any of the water we tried to give him. So, good news is that they have ok’d him to start to eat a thick/purée diet (think pudding, applesauce, baby food) but for now that is all…and unfortunately, that means that the feeding tube has to stay in place for now. In order for optimal healing to take place, Everett’s diet needs to be as maximized as possible, (ie: a balanced diet of fat, carbs and proteins) and they just aren’t confident yet that Everett can get that from puréed foods alone. So at least until he can demonstrate better feeding ability, the pesky NG tube has to stay. I was really hoping they would be able to remove it today, so hearing they weren’t going to was kind of a disappointment. Hopefully with a little extra feeding therapy at CHLA, we will be rid of the feeding tube by next week. Please say a prayer for this as well, Everett hates the feeding tube and I can’t say I blame him one bit.

We did have a few moments of happiness sprinkled in amidst the frustrations today. Everett had a pretty good morning (even though sleep was scarce again last night), he was bright eyed and even tossed a few half smiles my way. I put an episode of Sesame Street on his tablet and you could tell just from the way he looked at the screen that he was so excited to see his Sesame friends. We also worked throughout the morning on sitting up on his own and holding his head up, which he is actually getting pretty good at! And our friend Kelsey from Child Life came by again for a visit and she blew some bubbles for Everett, which he was very entertained by. We’re really going to miss her when leave tomorrow, she was such a friendly, bright light during our time here.

From the sounds of it we will be headed off to CHLA tomorrow for inpatient rehab. We are hoping that this will be beneficial for Everett’s recovery, especially when it comes to relearning the skills that the surgery caused him to lose as well as helping him remember how to eat and feed himself. Brandon said it very well tonight (I actually read his text as I was writing this last part of today’s blog), the first part of this journey is over tomorrow and we get to start the next part…which is one step closer to going home! I know it will be a lot of intense and hard work for Everett, but our hope and prayer is that it is beneficial to him and lays a good foundation for him to build on as he recovers.

I know I’ve said it a million times but thank you all for following along on our journey and for keeping sweet Everett in your thoughts and prayers. He truly is our brave little warrior boy and we couldn’t be more proud of the way he has bravely fought his way through this past 10 days. I truly believe we could all learn a few life lessons from this sweet, strong boy 💜

-Sara