I’ll start today with a slightly embarrassing and rather funny anecdote…when you spend a lot of time in a hospital, with minimal trips outside into the “real world” you tend to lose all track of time, or in my case days. 😬 I pretty much spent all day yesterday thinking it was Monday and most of the morning today thinking it was Tuesday. So imagine my surprise when someone said to me that today was actually Wednesday…I think my response went something like this “I’m sorry, what? Isn’t today Tuesday?!?” #embarassing
Last night, after neurosurgery determined they liked the way Everett’s post-op MRI looked, the ICU team was able to successfully get him off of the sedative and extubate him. After this happened, we very quickly realized that he was most likely in quite a bit of pain. My thought is that most likely the post op pain had been masked by the sedative and when that went away, the pain had a chance to rear its ugly head. It’s just so hard to decipher when a tiny human is in pain, especially when said tiny human can’t use words to tell you when they are hurting. It’s kinda like playing detective and trying to determine if the elevated blood pressures, fast breathing and high heart rates are because he is in pain or due to something else. I really wanted to avoid the narcotic pain meds if at all possible but I realized, as soon as he was more alert, that doing that probably wasn’t the greatest idea. So I decided to ask for the stronger medications to keep him as pain free as possible. I wanted him to be comfortable and to be able to rest, because without rest he won’t be able to heal.
The night was rough, not gonna lie. He is obviously so much more aware now without the sedative but also he is still pretty swollen so it’s hard to tell if he is awake or asleep. He had a pretty rough couple hours between about midnight and 2:00 am and again between about 5:30-6:30 am. Luckily his nurses have been very on top of it and are doing there best to manage what I can only assume is rather large amounts of post op pain. Speaking of his nurses, can I just take a quick moment to say how absolutely WONDERFUL everyone here at UCLA has been. From the moment we walked in the doors to be registered on the day of surgery, every single person we have come into contact with has been nothing short of kind, courteous, professional and so very caring. I might be a little bit biased given my chosen profession, but medical professionals truly are angels on earth.
This morning the ICU team talked about the plan and goals for the day. They wanted to wean down his high flow oxygen and planned to get him completely off the oxygen and on to just “room air”, they plan to start very basic PT and OT with him and they want to evaluate him and see if he is able to swallow without aspirating so they can try to get him off the IV fluids and begin to introduce fluids and solid foods by mouth to him. (I’m sure at this point poor little bubs is jonesing for some chicken nuggets and strawberries!). But since he is still super sleepy, they may hold off on the swallow challenge until tomorrow. In the meantime today, they will give him some formula through his NG tube so at least he has something in his stomach…because let me tell you he is definitely a hangry little fellow right now (I mean he hasn’t eaten anything since Sunday night and it’s Tues…I mean Wednesday 🤣, so I’m not surprised!!).
Emotions are still at an all time high around here. I know so much of it is just exhaustion, being cooped up in the hospital with very minimal outside contact (however I am so thankful for FaceTime so Everett and I can see and talk to Brandon and some of our other family…technology really is a godsend), and again the gravity of the procedure that Everett just went through is still hanging very heavy over my head. I was talking to the occupational therapist today and I made the comment that I feel like I am grieving for everything that was lost by doing such a radical procedure. Everett worked so hard to be able to crawl, to walk, to climb and to do things like feed himself with both hands and in the span of 9 1/2 hours, that was all gone. I am confident that he is a strong, determined boy and he WILL gain so much of that back, but at the moment I feel like I am mourning the loss of such huge milestones that my boy worked so hard to achieve. But, something that really stuck with me that she said was that it will be so amazing to see him relearn all these skills…like how many parents can say they got to see their baby learn to walk, not just once but twice. Silver linings right?!? Plus the chance for him to live a seizure free life thanks to this surgery, was something we just couldn’t in good conscience say no to.
Victories for today… they were able to remove his arterial line (one less tube for him to try and pull out!!), and about 2 hours ago they were able to completely remove the oxygen and for the most part, his oxygen saturation’s are holding steady. PT and OT are happy with what he was able to tolerate today and from what I’ve heard his labs are looking good and the output from the post op drain in his head is moving in the right direction.
As we continue this journey, please continue to pray for progress every single day for our little fighter. Pray that his pain will be manageable and that he will become more and more alert as each day passes. And if I can be selfish, I’d like to ask for you to keep Brandon and I in your thoughts and prayers as well. Being apart, especially under such stressful circumstances really sucks. And while I am shouldering the burden here at the hospital (which in and of itself is very emotionally draining), Brandon is not able to be here (again, thanks a lot COVID19) and hasn’t been able to see Everett in person since he kissed him goodbye and I took him to pre-op on Monday morning. As I’m sure you can imagine, that is equally as hard emotionally. We are hanging in there but any extra thoughts and prayers you could shoot our way would be greatly appreciated!