I don’t even want to write a post right now, because I’m just so tired of writing post after post of bad news about Grayson. I have no pictures of him smiling, because he has barely smiled in 7 days. But I know people are praying and want to know what’s going on, so here it is (and I’m sorry this is so long):
I don’t even really remember Sunday, but I know it was miserable. It was Ryan’s birthday, and I went to the clinic in the grocery store and got antibiotics because I woke up feeling awful. Grayson was still crying, coughing or sleeping- just like he had since last Thursday.
Monday morning, Ryan and I had a meeting to go to, so our friend kept Grayson here at the house. He stayed in the swing the entire time we were gone. I had an appointment with our pediatrician that afternoon, so I loaded him in the car with his feeding tube attached and working fine. When we got to the doctor, I picked him up out of the carseat and his tube was detached and hanging from his bag. I laid him in the back of the car to check his button. It had come out. I have NO idea how it happened, but you can imagine my panic (and the cuss words streaming through my head).
I went in to the pediatricians office and frantically asked what I should do. OF COURSE they said go to the ER- ugh. I HATE THE ER. And it had been less than 48 hours since the last time we were there!!! When we got there, they immediately took him to triage and tried to put the button back in, but the hole was already starting to close (it’s amazing how the body “heals” itself so quickly, but very inconvenient in this situation). So they had to put a catheter in the hole and wait for it to open up again. In the meantime, they sent us to the waiting room with the other million people waiting to be seen. My mom left work to come be with me (Ryan was at practice and I couldn’t get hold of him until later). I was holding Grayson, and his neck and arms started jerking sporadically. This had been happening several times in past few days, but I really didn’t consider that it could be a seizure. But a friend, whose daughter is epileptic, came to sit with us and as soon as she saw Grayson she said, “He’s having seizure activity.”
I went and told the nurse that Grayson was seizing, and it typical ER fashion, unconcerned, she told me they’d get him in a room as soon as they could. We waited about 3 hours for a room and they hooked him up to oxygen and heart monitor. His oxygen kept going low and setting off the alarm, but again, no one seemed that concerned. Did I mention that I HATE THE ER?? They got the button back in, did a suction tube down his nose and got a lot of nasty stuff out, and then, yes, sent us home. The newest theory- his breathing/lung problem is viral because he doesn’t seem to be responding to antibiotics…but oh, keep giving him the antibiotics. And yeah, call your neurologist about the seizures in the morning.
Yesterday, Grayson slept most of the day. My mom took the day off to help me, and I got some rest too. But I am having a lot of trouble relaxing and sleeping. I’m having trouble falling asleep and staying asleep and it doesn’t help that Grayson is crying a lot in his sleep too. Grayson had more seizures yesterday, and lots of pain in his tummy, so I gave him the Tylenol with Codeine again, which I was trying to stop.
This morning, he woke up crying in pain. His jammies were soaked- the stoma (hole in his tummy) was leaking. Yes, more panic. Called the GI doctor and left a message that this was urgent and to please call me ASAP and I was not taking him to the ER. They called and left a message at 4:00. Said according to the symptoms I described on the phone, they want to see him in clinic. They can get him in next Tuesday. Thanks a lot for your urgency! But thankfully, the problem resolved itself throughout the day, and his tummy looks a ton better tonight.
This afternoon, we had an appointment with the neurologist. Dr. R confirmed that Grayson was having seizures (he was having them while we were there) and upped his meds. Hopefully we can get those calmed in the next day or so. He’s also starting Grayson on the Mito Cocktail- supplements that may or may not help his motor and cognitive development. He also gave me some advice on if we have to go back to the ER (shudder). He said I need to tell them that my kid has mito, is sick, and I’m not leaving until he’s well. Hopefully I won’t have to use that advice anytime soon, but I’m glad I know what to say. We were about to leave the appointment and my mom (who was with me) noticed G needed a clean diaper. We can call off Poop Watch 2012- biggest poopsplosion he’s EVER had- it was EVERYWHERE. Oh my word, there are no words. At least he isn’t constipated!
So I feel a lot better after our appointment today. Since Dr. R believes Grayson does have Mito, and he’s an aggressive doctor, I feel like we get a ton accomplished every time we see him. And Grayson seems to be feeling better- I even got a few smiles tonight. Here’s hoping he’s on the mend and we can get back to normal soon!
Oh my. I honestly can't believe what your family has to go through on a "normal" basis. I pray that Grayson's health improves quickly and you can avoid the ER!!!
Oh Elizabeth. I don't know what to say. It all sounds so incredibly difficult. I feel for poor Grayson and all he is going through and for poor you and all you have to deal with. I literally cannot imagine. Sending strength to you and your little boy.
Praying for you and Grayson. What horrible experiences… and those ER's! UGH! Good news with Dr. R. Here's hoping you get to post some good news for a while now. Stay strong! You're an amazing Mama!
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Yesh! Thats a lot! Praying the next few days are totally boring at the Baker house!Bridget
huge hugs and lots of prayers for little grayson.