I hope I don’t fall asleep writing this update. Seriously, I am worn out. This week has kicked my butt. Fortunately (?), my pint-sized sidekick is still slightly drugged from being sedated for four hours this morning and is already down for the night (please, oh please, let that statement be true!) so I can lump on the couch until I get the motivation to take a shower and go to bed myself.
We’ve had three medical appointments since Tuesday- two doctors appointments and then the sedated testing this morning.
Tuesday morning, I picked up the Auditory Impairment teacher at 6:30 and we schlepped down to the med center for what was supposed to be G’s hearing aid appointment. I’m so annoyed by what happened that I’m not going to write details. The short version is the audiologist did NOT have him down for a hearing aid fitting but another hearing test (he had one a week ago). And our insurance does not cover hearing aids. And hearing aids cost between $1000 and $2000. And remember, the ENT only wants us to do a 3 month trial and really doesn’t think it’s even going to help with Grayson’s speech. So am I going to pay over $1000 for something for 3 months that probably won’t even work? Um, no. So the plan is to either wait until our Medicaid benefits start because they most likely will pay for a hearing aid, or see if the AI teacher can find us a loaner. So I left annoyed, but not until I demanded the office refund my $50 copay.
Wednesday, we had an awesome GI appointment. First, it was awesome because it wasn’t in the med center, but in his other location, which is about half the distance from our house (and has free parking!). He was incredibly pleased with G’s weight gain, said his button looked great, and agreed when I asked if we can try and wean him off his GI meds. Since Grayson’s vomiting has drastically decreased, I don’t want to keep pumping him with meds if his body can function without them. He also agreed that we should start trying bolus feeds again. I’m nervous, but excited about this. I don’t want the vomiting to start again because of too much volume at once, but it would make life SO much easier if we could have Grayson on bolus feeds when he starts school in August.
Wednesday afternoon, UPS dropped off a large box. I had no idea what it could be. I opened it, and there was G’s new Childrite seat that I had ordered less than 24 hours before, and no, had not paid overnight shipping. I was so surprised and impressed! In the little time Grayson has spent in the seat, I can already tell he is SO much more comfortable than he was in the baby Bumbo, which he had clearly outgrown. Hopefully this seat will be something we can use for a long time!
This morning, we had to be at the hospital at 6:30 to check in for G’s procedures. He had an MRI of his brain, a spinal tap, an EKG and an Echocardiogram. Last night, G couldn’t have his formula after midnight, so at 12:00 I had to switch his feeding bag to Pedialyte and then stop that at 4:30. We left for the hospital at 5:30 and it is amazing to me how much traffic there is at that time in the morning.
The anesthesiologists were concerned when they saw Grayson coughing and gagging on his spit, like he does all the time. They thought they might have to intubate him with a breathing tube, which is what caused the nightmare complications after his surgery in January. The anesthesiologist knew I was worried about this, because he sent me text updates throughout the morning (so nice!) which always included “He’s doing great! We haven’t had to intubate yet!”. Anyway, they put him to sleep with strawberry flavored gas, we kissed him goodbye, and didn’t see him again for almost 4 hours.
According to the doctors, everything went beautifully, that this is the view we had for the next hour and a half.
This kid does NOT like to wake up after anesthesia. But I really don’t blame him- if I was wrapped in warm blankets I wouldn’t want to wake up either. So we waited. And waited. And waited. Ryan was getting antsy because his team has a playoff game tonight and I know he was having visions of Grayson snoozing away in the PACU until midnight. So finally I convinced the nurse that he needed fluids and uncovered him so I could hook up his tube. I decided to change his diaper and get him dressed too. As soon as I took off his diaper, he promptly woke up, screamed, and peed all over himself. But he was awake! All his vitals checked out so we left shortly after.
Thankfully, this crazy week has no more medical appointments. Tomorrow we are heading to East Texas to see the house and property my parents are buying as a vacation property. I think it will be Grayson’s longest car trip he’s ever been on (no, we don’t go anywhere). Maybe he’ll still be tired and will sleep!
*One last thing I have to share about this morning because it was so cute and funny. In the PACU, there was an adorable little girl about 3 or 4 who was waiting for her parents to come get her to go home, and she was getting impatient. She started taking off all her sensors, tape and trying to take out her IV. Here was the conversation we overheard:
Nurse: How do you know how to do that? Are you a doctor?
Nurse: Well, then surely you must be a nurse.
Nurse: Well then, how do you know how to take off all this stuff? You are such a pro.
Girl: Because I am a tooth fairy.