Well, when they said things around here slow down (even more than they already have due to COVID19) on the weekends…they weren’t joking! It’s so quiet inside the hospital for the most part. Even the Starbucks coffee stand is closed on the weekend (cue sad crying on this mamas part), thankfully they still serve regular coffee in the cafeteria or else we might be having a totally different conversation right now!
Bubbs has a pretty good night for the most part. He did have a super high heart rate for a few hours in the evening which caused all kinds of fun alarms to go off more than once. Between his nurses and I, we are figuring out that his heart rate going up is how he is trying to tell us that he is in pain and that we should probably do something about it ASAP before he gets super angry. He usually does pretty good most of the day but as it gets later into the evening, he seems to get more uncomfortable and starts to get a bit more vocal. Good news though is that they feel that, for the most part, he is remaining pretty comfortable and have moved all of his “pain” type medications (even Tylenol and Motrin) to PRN (as needed) as opposed to scheduled around the clock. I am still asking them to give him either Tylenol or Motrin as often as they are able to because I don’t want to end up having to play catch up with his pain all night long.
None of the pediatric therapists are here this weekend so he is getting a bit of a break from his exercises. I’ve been working with him a little bit today on stimulating his right side though so we don’t lose the bits of progress he has made. The neurosurgery resident came by early this morning and clamped off his surgical drain to begin to challenge his brain to absorb its own CSF and maintain appropriate ICP’s. Most likely they will give him all day today and tomorrow to show what he can do and then hopefully they can remove the drain on Monday. We are keeping our fingers and toes crossed and praying that he will not need a shunt. His pressures have been between 10-17 most of the day which are within range thankfully. They want them to stay between 5-20, so hopefully they stay where they are or even get a bit lower over the next 24 hours. I tried to hold him a little bit this morning but I think all the movement agitated him because his heart rate, blood pressures and ICP immediately jumped. Hopefully tomorrow he will tolerate me holding him because I miss cuddling with my little nugget!
The highlight of my day was a lunch date with this handsome guy!
We had been talking the past couple days about trying to at least have lunch together outside the hospital if the rain ever cleared up and today it did just that. We sat out in the cafeteria patio and ate WaBa Grill (if you are in the SoCal area and you haven’t tried WaBa Grill, you are missing out!!) and just enjoyed the sunshine and each others company. We tried to figure out a way to smuggle Brandon upstairs so he could see Everett but we couldn’t come up with a fool proof plan. 😢 Regardless, it was so good to see my husband and have some actual face to face interaction for the first time in days.
Tomorrow marks the one year anniversary of Everett’s Infantile Spasms diagnosis, and man what a year it has been. I have a post in the works talking about our Infantile Spasms/Epilepsy journey and I hope to have it finished and ready to post tomorrow. I hope it will give you all a little glimpse into what this last year has been like and why Everett truly is the strongest and bravest little boy in all the lands.
Hope you are all having a wonderful weekend and have a wonderful Easter tomorrow…in groups of less than 10 and staying 6 or more feet apart of course! 🤪