Wordless Wednesday

The boy is a hazard to himself sometimes!

Monkey had his tonsil surgery on Tuesday, and on Thursday he tore in half his big toenail! His throat was still so swollen and sore, he was hardly talking. All of a sudden I heard this horrible screeching scream and went running. He was trying to move the rocking chair in the playroom and it smooshed his toe. When he tried to pull his toe out, it tore his toenail. As you can see it's still attached, but torn almost halfway across. I think it's worse than if it had come off, because I don't know what's going to happen now. It can't just fall off, because it's only torn halfway across? I have a bad feeling that I am going to eventually have to try and clip it off as much as I can. This will take numerous adults holding him down for sure. His anxiety whenever I clean it and re-bandage it are through the roof!

My poor Monkey. It hurts me just looking at it! It's torn all the way from the bottom corner where the dried blood is pooled, to that little red mark right in the middle of the nail. Halfway! Ugh. :(

In lighter news, I took him to see Alice in Wonderland in 3D today. It was good! More importantly, it was nice to get out on a "date" with just he and I. Tomorrow he is finally going back to school. He's been out for a week, and there's no school next week for Spring Break. He'll be in flip flops though, because of his toe!

Isn't it BEAUTIFUL!! :)

I am so excited about my new blog look! :) I bought it from Adori Graphics and she is so sweet.

She even made me a matching button, so you can grab it and put it on your blogs. Isn't it lovely?? :)

Interupting all this tonsil talk to rant about seizures

I know, can we get a post of happiness? I will have one soon, whether I have to pull the happiness out of my assskkkkkmenomorequestions. ;)

So Peanut is still having seizures, even one the increased dosage of Keppra together with her Neurontin. I just shot of an email to the neurologist to let him know. He mentioned adding in Depakote, but our Metabolicist says no way. Evidently Depakote is NOT good with a metabolic disorder, as it affects the body's metabolism in general. So I emailed the neurologist that, and asked him what our next option is.

I hate seizures. I hate that she has them and we probably don't even notice most of them. When we see them, they are so short. Head drops that last seconds. The head drops down, her arms go up a bit, and then back to normal. Staring spells that last 5-10 seconds. So if we notice them and they're this quick, surely we miss some. When I'm driving, I can't see her. When she's sleeping, when she's on the school bus. The bus driver has seen a few of them, mostly bigger ones. I know these short ones aren't putting her in immediate danger, but it still breaks my heart.

I hope the neurologist has a good suggestion!

Rough Morning

So far this has been a rough morning, and it's only 9am! :( Monkey woke up really sore. He is having a hard time swallowing at all, and now he says his tongue feels like it's burning. I assume they use clamps during the surgery to keep the tongue out of the way, as there's a cut and a sore on one spot that I can see. Monkey is tongue tied though, so he can't stick his tongue out very far so I can't see much.

He has had two popsicles so far, and his meds. He says nothing else goes down. We've tried jello, baby food bananas, and ice cream. These things were all fine yesterday, so today is starting out worse.

I told him we just need to be sure he eats popsicles all day and is peeing. I'm worried about dehydration, since he won't eat or drink anything except the popsicles.

This is rough! The ENT had told me that 8 or 9 is the age where a tonsillectomy starts getting harder than it is for little kids. Monkey is almost 10, so I guess it's normal for a rough recovery.

Cross your fingers that I can keep him hydrated and ease his pain some!

A Tonsilless Monkey

Yesterday was the big day. My Monkey boy was so scared. It's definately harder with an older kid, who undertands what's going to happen to him. I asked them to give him Versed before taking him and putting the IV in, as his anxiety level was already sky high. So they juiced him, and then wheeled him off. They said they would gas him to sleep before they did the IV, and the Versed was kicked in so he didn't care about the gas mask.

Surgery took 90 minutes, and the ENT came out to tell us about it. We had been on the fence about doing this surgery, as the ENT wasn't sure it was the answer to Monkey's sleep apnea. He said he thought it had about a 50% chance of helping, but the pediatrician agreed that we should try it. It's a good thing we did - his tonsils were very infected and full of yellow pus! He also said they were badly scarred from previous infections. Wow - Monkey has NEVER been diagnosed with tonsilitis! He has never complained about a sore throat, except the one time he had strep throat. My poor bub had such yucky tonsils and we didn't even know! The ENT also said that he had hardly any adnoid tissue, but he went ahead and removed it to be safe.

Hopefully this will help the sleep apnea. If not, we have to do a bronchoscopy to look at his airways. He has very small airways and a history of severe laryngotraceomalacia. CROSS YOUR FINGERS that the tonsillectomy stops the apnea!

He is sitting playing his DS right now. He's had a million popsicles, jello cups, and I made frozen pudding pops. He drank a flat 7-up, but it's hard to get him to drink. I hate to have to scare him into it, but I told him that if he doesn't drink enough and pee enough, we would have to go back for IV hydration. It sounds mean, but otherwise he refuses to drink. Poor Monkey. :(

The pictures below are in order from when we got to the hospital and checked in, to the recovery room, to home. I love the one with the popsicle, he was still so drugged but insisted he was ready for a popsicle. And of course the last one, nothing makes him feel better than snuggling with his Hannah dog. :)

Be careful what you wish for

We may have "the answer" to Peanut's underlying condition. We are waiting on information on how to run the blood test to confirm. The only lab that can diagnose this disease is in Italy. Our insurance doesn't want to pay to send the blood there. We are working with a metabolic geneticist to figure out how to get the blood drawn and send it to Italy.

I don't know what to ask you to pray for. We have always wanted "the answer", the diagnosis, the bottom line. But if this disease is the bottom line, it's not good. :(