It’s been over two months since I posted an update so there is quite a bit to say. In my last update, Skye had just recently started Humira injections and was having some pretty bad side effects including chest pain and pressure, muscle aches all over, lethargy, a cough, etc. I brought this to her dr’s attention and was told that “none of ‘her’ kids, aka patients, had experienced those issues”. We made the decision to stick it out for a bit longer since we really weren’t sure if it was definitely the medication. We did not want to just jump from one med to another so quickly.
Well, fast forward a bit and things continued to get much worse. Not only were her meds not helping and causing these same symptoms every time she got her injection, but her JIA symptoms were also continuing to increase. A new joint is now messed up (her wrist), other joints became worse and by the end of July she was unable to walk much at all but could use crutches to get around.
Alex and I both got sick with Covid in the middle of July and about a week into my Covid symptoms I ended up getting a terrible rash on my face as well. When it continued to get worse, I finally gave in and contacted my dr for steroids. It looked pretty bad but felt a lot worse than it looked! Still don’t know what it was from but it was probably some strange Covid symptom for me. You never know in this family.
On to August!
August was a doozy for our family. Skye’s pain continued to get worse and she has now been living on the couch downstairs for the entire month of August because she can not get up the stairs to her room. By the 5th of the month we were getting increasingly concerned. She stopped talking, was barely eating and was telling us some pretty scary thoughts she was having. It was a new low for her and when nothing was helping, her pediatrician suggested we take her to the ED to see if they could provide any relief there. She ended up being admitted and transported downtown via ambulance and they kept her for 4 days. The huge positives to the hospital stay is that she was able to see a psychologist and psychiatrist there (our insurance doesn’t cover them outpatient) and the nurses and drs were able to see and document her reaction to Humira since she was due for that while admitted.
A few days after she was discharged, we had a previously scheduled procedure which we decided to follow through with. She was supposed to be under sedation but unfortunately we found out the hard way that Skye does not respond appropriately to the medication she was given. She was not sedated nor did she experience any pain relief despite being given enough medication to knock out an adult man (her dr’s words). After the procedure was done, our girl was in such excruciating pain that her blood pressure was up to 168/144, heart rate was really high and though the medication did not sedate her, it did take away all of her inhibition in this awake and painful state. She screamed (and I mean SCREAMED) in pain, begged us to let her die, told us she’s “done” and can’t live like this anymore and in between all of that she started to pass out. She’d go from screaming bloody murder to her eyes rolling back in her head and instant silence at which point she would stop breathing and her Oxygen sats would drop to the low 70s. Alarms going crazy while the nurse and I did anything we could to rouse her so she’d breathe again. I am pretty sure that Alex and I held our own breath most of that afternoon as well. After about 30-45 seconds she’d gasp for a breath and go right back to screaming. It was startling each time it happened and she’d pop up like a Jack In The Box and make everyone in the room jump. This went on for a couple of hours and she passed out about 20 times over the course of that time. Thankfully she does not remember most of this but Alex and I were pretty traumatized - still are to be honest.
The next day we had an appointment with her rheumatologist and made the decision to switch her biologic medication since she is now having a confirmed reaction to it and it was not helping anyway. We will also now be sent to a hematologist (this Thursday) to check her for my blood clotting disorder and to a geneticist to be tested to see which medications work and do NOT work for her. So more appointments and more specialists but it feels like over time we are finding more pieces to the puzzle to better see the bigger picture which is a good thing.
As of right now, she is still living on the family room couch and is now strictly using a wheelchair to get around but she spends 98% of the time not moving at all. We have some dr appointments downtown this Thursday as well as her new medication starting this Friday. This time she will be receiving infusions at the Children’s hospital but she will only need to get them once a month. Everything takes time to know if it will work but we are really hoping this is “the one”.
In other, really BIG news - I am almost 6 months seizure free and I will be able to drive this coming Saturday! I’m definitely looking forward to having that freedom back. Today is one year since my very first seizure so yesterday was a weird day for me. On one hand, it feels like I completely lost a year of my life and I’m grieving that but on the other hand, it feels like Alex and I should celebrate that we made it this far. It has been a really difficult year for so many reasons but WE MADE IT! Ironically, my mind is so overwhelmed with feelings about hitting this one year mark that I got less than 2 hours of sleep last night and lack of sleep is what triggers my seizures in the first place. That is really the main reason for this update, it helps to write things down to get them out of my head. We are far from “done” and Skye still has a long way to go but with me at least, I think I can possibly see the tiniest sliver of light at the end of the tunnel.
In mid October I will have a CT to check to see if my back fusion is complete. If it is, my neurosurgeon will be scheduling my surgery to remove the metal cage and screws that have been holding me together, if it is not, we will have to re-check at a later time. We really need this fusion to be complete! The metal is screwing with me (ba dum tss 🥁) and it needs to go asap.
Ok, I’ve gone on long enough. That is really the short version believe it or not! But I feel better after having written it out.
Here’s to hoping for better days ahead and not giving up! ✌🏼
