Welcome to our craziness. Let’s just start by saying that. I feel like we live in a state of craziness lately.
So back in OCTOBER I booked today’s follow up with addysons sleep neurologist. There was nothing on the calendar year, so today looked like the perfect day. Plus it was a 930am appt… Good get it done and out of the way.
Then we met with both kids psychiatrist back in NOVEMBER, she is also a kki Dr and said it’s been a while since they have had their bp taken at kki so can you just bring both kids to the 10 MARCH appt and I’ll put a note for the nurse to do both kids vitals. Yup perfect…..sounds great.
Then I realized… I’m off so let’s book addysons second hep b vaccine for that day with her pediatrician. Perfect 245…. at this point everything is still working out great.
Fast forward to this Monday. Addyson was enrolled in a clinical trial at children’s. This trial is interesting to us because they are trying to find the connection between her epilepsy gene and autism. Since Ethen has autism and she has this gene variant, we felt it was important to participate and help the researchers learn more about the gene.
They needed a virtual appt with her this week. I said great Friday at 1130. Still all is good.
Then palliative care said we can see addyson this week. They are going to try to help with medication management and quality of life on the flare days, where our trypical protocol isn’t working. They were great, and had an appt for Friday at 130! Man a busy Friday but it’s all doable.
Addyson comes home Monday afternoon and says “I’ll be at school on March 10th right? ” I said “no”. She starts crying ” I miss all the fun events”. She is right… She missed the last three class parties (thanksgiving, Christmas and valentines day) all for Dr appointments. This party was because she and a few others improved their math scores so much. I felt bad but told her there was just no way.
Fast forward to yesterday afternoon… Her kki appt for 930 this morning converted to telemed. So I got her to school this morning in time for enjoy 40mins w her class during their party… Then pulled her and did her first telemed appt in the school parking lot. However now both kids who were supposed to have vitals done this morning at kki, will now get them done at 245 at Hopkins during her hep b vaccine appt.
The things we do for our kids. However this was a big deal to her and I hate that her medical stuff robes her of so much, so this was something easy I could do so she would feel included. So we did it!!!
Now, how did today’s appointments actually go?
The first appt was the Neurologist for her Sleep Disorder. It went as expected. She said that we will rerun Addyson’s labs to see where her ferritin numbers are. After we get those results then we can decide on what we are doing next. She thinks a 24hr EEG at some point is a good idea, along with keeping an eye on her overall sleep, due to the fact that she did have central apnea events, which is where the brain decides to stop sending signals to tell her to take a breath. Luckily it looks like her O2 only drops from 99 to 93, however, we will continue to monitor.
The second appointment was with the clinical trial team. Overall super easy appt. Just had to answer questions and then do some brain teasers puzzle. All testing cognitive function. The team is going to try and get Ethen in for genetic testing, because since Addyson carries these genes and he has autism they are curious if he is also a carrier of the gene.
Third appt was with the palliative care team. Our main focus here again, is to help when our day to day protocol isn’t working. For example, on the bad flare days, which have been happening more frequently. These flares used to be every so often, now they are weekly. Appt wasn’t great. She pretty much said that POTS is tough, and because changing one thing can throw everything else off, she really doesn’t want to change anything and she will have to go talk to a few other folks to see if they have any other suggestions. She said as far as pain management, she couldn’t think of anything to help us on the bad days. She said as you realize POTS is just very tough and we really just don’t have great protocols yet. Everything we know and do, you all are already doing. So I feel like that was a wasted appointment, but oh well, we tried.
Last appt of the Day is vitals for both kids, and Addyson’s HEP B vaccine and bloodwork. Ethens BP was a little elevated (it was last time too) so we will be monitoring that.
Beaming with hope 