1.I know I’m supposed to be a pro with this whole special needs parenting thing, and if you want advice on in-patient hospital stays, I’m your gal! But frankly, I’m just over it right now. Even when you have a routine down and the hospital staff all recognize you, it’s hard. I don’t like to share the hard stuff much any more because I don’t want these few hard moments to drown out the plethora of joyful, happy, and regular events that make up 90% of our life. I don’t want sharing the “realness” of my life to make you think those “gritty”, “real” moments are the memorable parts of my vocation as a special needs parent. They’re not. But just because I can focus on the joy, navigate the hospital like a boss, and find the grace in an in-patient stay doesn’t mean it doesn’t all get old. Old for me, old for Fulton, old for Teddy, old for Tony, and old for our older three kids.
So, when for the fourth time this year, I had to try to rearrange family life around an ER visit to the Children’s Hospital of Philadelphia (not counting a few local ER visits), I felt a bit defeated. It just seems like we can’t stay out of the ER. Common colds, stomach bugs, and routine medical procedures all have gotten the upper hand. I don’t want to have to keep being this cheery special needs mom in the face of adversity. I just want a normal life for more than a couple months. I don’t want to keep making it look like “anyone can do this”. I want to do what everyone else gets to do.
However, let me start with where I left off a couple weeks ago.
2.First, the NCAA will not accept any of the classes Addie took through Queen of Heaven Academy because QHA is not an approved school, and QHA does not plan to go through the approval process. I was under the impression based on a phone call to the NCAA that the course work would be considered independent of the school, but that is not the case. If I taught the material, or private tutors did, they’d consider it, but because it came from an online school, the school needs to be approved as a whole for their courses to be considered. That means if Addie attends a Division 1 or 2 school she will need to be red-shirted for a year (no competing, but she can practice with the team, and no athletic scholarships). While we’re obviously disappointed with the situation, at least we now know where we stand and can resume the college searching process. Just to clarify, I still believe QHA offers an excellent classical education, however, if you have a student athlete who may want to play competitive sports in college, you will need to enroll your child elsewhere for high school.
3.Byron took a tiny role in our church’s dinner theater production with me. He came along for practice on Monday and even though he only has a few lines, it’s a humorous addition to the play and I’m happy he agreed to do it.
4.Wednesday the boys went in for their regular Spinraza doses. Teddy’s check in time was 7 a.m. and Fulton’s was 11 a.m. Unfortunately that meant we all needed to leave at the crack of dawn during rush hour traffic. Teddy’s injection went fine, but after Fulton’s lumbar puncture (LP) they told me he had some leakage of spinal fluid, but that they’d stopped the flow and believed that he still got the dose of Spinraza. After the usual hour observation window post-LP he was released and we got some food to go since we wanted to get out of Philadelphia before rush hour. Fulton ate some pizza and then fell asleep on the way home. However, when we stopped to pick up Addie and Byron at the community college, Fulton woke up and starting throwing up. He threw up more when we got home and was generally miserable and exhausted the rest of the night. The next morning he woke up soaked in what I soon realized was spinal fluid. In looking at his back we could see a steady drip of fluid coming out of the site of the LP. I was slightly panicked having never had this happen before. Of course it was impossible to reach anyone at the hospital at 6:30 a.m. so once his nurse arrived, we headed in to the ER. Thankfully Fulton was in good spirits so long as he was reclined in his chair, and he kept breakfast down thanks to a dose of the anti-nausea meds we now have on hand. His back was pretty wet again by the time we arrived so I was eager to get confirmation from someone, anyone, that he was not in imminent danger due to such a large, steady loss of spinal fluid.
5.I got the confirmation I wanted, and he was hooked up to IV fluids and they glued the LP site closed. But of course, we needed to hang out in the ER for observation to make sure the glue held and that the other symptoms didn’t return. We left around 3 p.m. and Fulton spent the evening in bed relaxing and his appetite seemed to be almost normal. The downside is we’re considering this dose of Spinraza a wash; $125,000 down the toilet. And we knew that there was a chance the LP site could open up again in which case we were instructed to come right back to the hospital for an admission.
6.In the midst of all this, Addie and Byron left with their youth group and a bunch of other young people from our diocese to attend the National Catholic Youth Conference in Indianapolis, IN. The reporter from our diocesan newspaper is going along (and he also happens to be in the dinner theater production) so I’ve instructed him to feel free to take and share as many pictures as necessary of them on social media so I can “follow the action” ie, keep an eye on them. If your kids are there, tell them to stop Addie and Byron and say hi! “My mom reads your mom’s blog and told me if I saw you to say hi.”
7.Friday morning, Fulton seemed to be fine. No headache, no leaking, no nausea, and he slept well. So I sent him to school. I put Teddy on the bus, then Edie and I left the house to go buy supplies and bake 30+ pies for a scouting fundraiser. (I know how to unwind after a couple of long days!) Unfortunately by lunch, Fulton was complaining of a headache and nausea. Tony picked him up and brought him home and I mentally planned a way to finish baking a dozen pies while simultaneously sitting in the ER. Thankfully, the LP site hadn’t reopened and once laid in bed, he felt better and wound up napping for a couple hours. I managed to finish baking all the pies and I’m hoping we have a QUIET WEEKEND free of ER visits. Whatever normal people due on the weekend instead of sit in the hospital, I’D LIKE TO DO THAT x1,000 PLEASE AND THANK YOU.
How was your week? Free of ER visits I hope. Link your posts up below and be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!