It’s Moving Day…Post-Op Day 7

Well, it’s Monday which means that the Starbucks coffee cart is back open and all is right in the world again (At least in my need for caffeine world that is). It is crazy to me to realize that one week ago today I was handing my baby over to have brain surgery. This week has been filled with more emotions than I care to admit and today has been an extra emotionally charged day for some reason. Hospital life is tough, and I truly feel for those mamas and dads whose kids are frequently in and out of the hospital or whose kids have been admitted for a long time, it is brutal to say the least. I’m honestly just praying that this is the last time we see the inside of a hospital for a very very long time.

Last night was rough. I think that Everett is starting to get his days and nights flip flopped, apparently this is really common for kids in the NICU and PICU. He was just super agitated and grumbly all night, like he couldn’t get comfortable and even when he seemed comfortable, he just couldn’t fall asleep. Like I said above…hospital life can be really tough. Thankfully, his sweet nurse Anna kept coming in to try and reposition him so he would be comfortable and changing his diapers frequently just in case a wet or dirty diaper was the culprit in making him not sleep well.

We found out early this morning that the plan was to send him to MRI for a quick look at some post op fluid build up around his incision. The PICU doctors explained that they didn’t think it was anything major and was most likely just fluid between the scalp and the skull bone but since he did just have major brain surgery, the neurosurgery team wanted to take a bit closer look just to be sure. As long as the results of the MRI were normal, the plan was to move him out of the PICU and on to the regular floor in the afternoon! He finally headed off to MRI at around 1:00 pm, luckily it was just a quick MRI so he was only gone for a very short amount of time and didn’t require any sedation. The results of the MRI confirmed that the fluid buildup was not underneath the skull bone but rather between the scalp and the skull as they had expected so we were cleared to get moved out of the PICU. After spending an entire week there getting to know all the nurses and providers, it was a bit bittersweet to say goodbye to them on our way out. They all took such good care of Everett and were so caring and compassionate towards me as well. We will forever be grateful for the care that Everett received on the 5West PICU floor. 💜

Our new home for the next couple days is the 3rd floor pediatric unit. Hopefully Everett will continue to make small improvements over the next few days so he will be ready to go to rehab and really get to work relearning his skills. He still has a very long road to recovery and a lot of work ahead of himself but we will be right alongside him cheering him on and I know so many of you will be cheering him on from afar.

My mama heart is still battling a lot of emotions these days. Today was a particularly rough day, with lots of emotional battles and some seriously ugly crying. I am still struggling so much with everything that has transpired over the past 10 days and realizing that, at least for the foreseeable future, life as we knew it is on hold. I said it before but I still kinda feel like I’m grieving over the loss of so many things. I am trying to find the silver lining in all of this, but sometimes that is just really really hard to do. I know my boy is a tough little fighter though and if he can handle everything he has been through this past week and still manage to not give up, than I can do my very best to be strong for him also. And if all of this leads to seizure freedom for good, that it is 110% worth all the ugly tears I’ve cried.

We love you all. Thank you so much for continuing to hold our family close in your thought and prayers.

-Sara