Jaime's World: Ear Infection....

A sucker makes my boo-boo ear all better...and it helps me take my medicine, too! :)

So, it FINALLY happened, we almost made it one year...Jaime got his 1st ear infection since getting his ear tubes on Dec. 1st, 2010. It's a bad one, too! Unfortunately, Jaime's tube in his left ear has lodged into his ear canal. They tried to remove it in the office, without success. The infection is so bad that I was told the ear needed to "calm down" before they could go in and take the tube out. So, in the meantime, Jaime is on antibiotic ear drops and oral ones. This infection is so bad that Jaime's lymph nodes are very swollen and sore, too. (That was the main reason for oral antibiotics, too).

In this pic you can see his "bumpy" (swollen) neck.

He's pretty miserable as you can imagine. While the left ear tube is no longer functional (not to mention stuck), the right ear tube looks great and is working just fine! :)
Tomorrow Jaime is scheduled for his sleep study, you know the one that has been scheduled and canceled several times since last February. The ENT told us that even though Jaime isn't feeling great, that we should still go. So, I'm going to take him tomorrow night. I hope it goes well and that they're able to get some of the answers that they're looking for.
Having said that...this latest ear tube discovery could pose a few issues. Jaime, most likely will need to get new tubes inserted, but will the new tubes make his ears great and cause his "illnesses" to gravitate towards his throat again? Throat infections restrict his airway which is already structurally abnormal. No one is eager to take out Jaime's tonsils because of his hemophilia...basically the only way the ENT will is if Jaime "fails" his sleep study. Of course if we don't fix Jaime's ears and just let them be without tubes...will that prevent throat infections? Which is "better" ear infections or throat infections? Certainly, ear infections are "safer" in Jaime's situation. Of course, if he has too many ear infections, it could affect his hearing like it did last year. He completely lost all hearing (which caused him to stop talking) for nearly 6 months. We do not want that either! So, here we are...once again in a catch 22 situation! We are going to meet up with the ENT and Pulmonologist in about a month to try and come up with a plan. Oh and for those of you keeping track, these are Cleveland drs. (Oh and on the plus side, Jaime will be starting his 3rd year of Synagis injections at home next week!)
As for our Cincy drs., that's a whole different set of issues. Jaime "failed" his first stomach emptying test on Monday, as he couldn't eat a whole egg. We went back on Thursday to have a "liquid" study done, rather than a "solid" one. Jaime was able to drink 1 ounce of Pediasure and then the test was started. Jaime had to lay on the nuclear scanning table for nearly an hour and a half. He had some periods where he'd realize he was "stuck" and start to cry, but overall he did well.

We got the results of the study...it was NORMAL. It took 37 minutes for that 1 ounce of Pediasure to go out of his stomach. I sent the results to Cincinnati, both Jaime's GI dr. and surgeon down there want to proceed with the manometry studies (esophageal and colonic). I'm waiting to hear back from Cincy as to when those studies may be. Jaime continue to have his digestive issues, from throwing up to being constipated...even needing 2 tries at an enema last week which still didn't fully "help" him.
In other news...on the day of the nuclear scan, Jaime saw the eye dr. He goes every 6 months because of his "lazy" eye. Jaime's overall vision is 20/30, which is great! It's just that his eyes don't always move together at the same time. His eyes actually turn in, rather than out. We're still not doing anything about it at this time...I sort of got conflicting reports from the 2 ophthalmologists who saw him. One wants to treat him, the other says let's wait and see. I was also told that we can't change something that is a neuro defect of the eye...likely due to any number of times Jaime was hypoxic. I may take Jaime to another ophthalmologist just to get a 2nd opinion. I just find it odd that two drs in the same practice can't agree on a diagnosis and treatment, so I need a "tie-breaker" dr. to figure it all out! (HA!)
It never ceases to amaze me that all of these CDH'ers start out in such horrible condition...some much worse than Jaime...and they are doing STELLAR! Then, there's Jaime...it's literally one thing after the next. I know that he's "better" than many, but just once I'd like him to "catch a break" and be well, without ANY issues at all. I'd LOVE for him to sleep through the night, poop normally, not have a constant faucet for a nose and a have a day where he doesn't throw up...and when I say he throws up...it's not just a "spit up." If he ingests 60cc's (2oz) he's liable to throw up 300cc's (10oz). It's soooooo weird! OK, I'll get off my soap box! I'm soooooo grateful that he's here!!! =)
Here are some Halloween pics! Jaime was a cow, who stayed home and helped me pass out candy and Jared was WaLuigi from Mario Bros. Both kids had a fun time (in spite of Jaime being sick!) Enjoy the pics!