Showing posts with label Ear infections. Show all posts
Showing posts with label Ear infections. Show all posts

Wednesday, April 4, 2012

Heaven, Hell and Ear Tubes

It’s almost Easter and I’ve been reflecting a lot on spirituality, heaven, God and how it all comes together. I’m so angry with God, the universe and our bodies. One day my anger will subside enough to keep figuring things out because I’m selfish and I want to be with Will and our family in the ever after. All these answers will come with time and it’s good to think about.
The four things I pray for, usually in this order:
-for a cure in Will’s life
-if no cure, for God to take Will home swiftly whenever it’s time. Let his life drag out and be full of joy, but please don't put him through more suffering at the end.
-for strength – for me, Neil, Will, our families, friends and strangers
-for peace
I’ll add in my prayer list this week that Will is getting his second round of tubes put in on Thursday. Keep him safe and let him come out of the surgery strong.
Someone who I admire very much told me the other week as we contemplated spirituality and showing Will the path to Heaven, “Religion is for those who are afraid of going to hell; spirituality is for those who've already been there." – I don’t know what I think of this statement, but there is something about it that I know I like. Pretty sure we’re in hell right now. It’s not what I expected.
I finally downloaded some pictures off the camera... Random shots!
Will "the duck" and Carson "the puppy dog" post bath.

Caroline & Will before the Rodeo Parade.

Monday, March 5, 2012

Health update

We are set for ear tubes surgery on Thursday, April 5. Unless something goes seriously wrong between now and then. It's just a day surgery and he will be put under anesthesia. The last time he did great, minus his first and only a$$-plotion of poop before the surgery.

The BMs continue as well! TMI and don't read it if you're grossed out by poop, but he literally had three feet of poop on Saturday.

It seems like Will really turned the corner recently. After a month or two of green snot, it's all cleared up, his BMs are on the serious uptick and his gait is getting better. The weight belt really seems to help give him more balance so we've been trying to wear that more at home too.

Let's hope and pray for a good health streak. The next two months will bring many changes for therapy. Our ECI services will end on his 3rd birthday (April 24) so I'm exploring new options. If anyone has suggestions happy to have them. We're looking for PT home health services and aquatic therapy. Right now, I've got us on the wait list at the Care Group of Texas for both.

We go in on Tuesday for 3 month labs for the EPI-743 trial and a hearing test. We have to do a hearing test before the ear tubes and then again after.


"Foot ball player" - Bike helmet, winter gloves, PJ shirt and of course, the football.

Tackling mom!

Wednesday, February 22, 2012

Ears Update

Monday, Feb 13 - Hospital admission
Tuesday, Feb 14 - Discharged
Friday, Feb. 17 - Pediatrician ear check; showed that the infection was still there and should have been looking much much better by then. So, we added an additional antibiotic
Tuesday, Feb. 21 - Go back to the pedi to get the ears check. It's in the process of healing, but not totally done. After some discussion, we decided we had a lot of things working in our favor: the pedi said we could basically show up whenever we want on Friday and Saturday morning and he would work us in; his snot wasn't green anymore, we still had the antibiotics from the hospital through Thursday and his gait seemed to be improving. So, we will watch Will closely and on...
Monday, Feb. 27 - consult with ENT doctor who apparently works closely with Dr. K. and "gets it"

If I had my wish, we'd have tubes put in on Tuesday, Feb. 28. HA! I'm just hoping that his ears. I'm ready for this little ear-ittating (get it, irritating? haha) adventure to end.

Will also needs to get some listening ears. Our little buddy has been putting on quite the "terrible twos" show and we're cracking down at home and school. He was in time out multiple times this morning and twice at school. When I picked him up today, I sat down at a table with one of his teachers and Will and we had a little chat about putting on some listening ears. We'll see how that works out. 

Age 9 months - when Will had his first ear tubes put in. And also sported quite the mohawk.

Wednesday, February 15, 2012

The Tale of the Never Ending Ear Infections

About 8 weeks ago, Will had an ear infection that we were able to catch it before the temperature came for a variety of reasons. His cough, congestion, green snot and wonky walking were big indicators and we made it to the pediatrician. Then two weeks ago another one popped up and we were able to catch it yet again! This junk has been following him around for the past few weeks and on Monday our luck ran out – the temperature came.
After consulting with Dr. Koenig’s nurse and Dr. Koenig we headed for the ER Monday morning. We were admitted afternoon and stayed till late Tuesday. It was the best thing for Will – fluid/IV, rest, and more aggressive meds.
Essentially, we had ear tubes put in when Will was 9 months old after multiple, back to back double ear infections. Initially the infection was so bad that we had to go weekly for about four weeks to get his ears / tubes drained – side bar story, that was not fun. They had to strap in to something that looked like a straight jacket and then used what looked like an acupuncture needle down into his ear to drain it out. So, fast forward to almost 25 months later and the tubes are no longer in place. That’s normal. They are supposed to fall out.
So here we are… a mess of ear infections with no tubes, a resistance to our “favorite” antibiotic augmenten  and our second hospital visit. That means we are going to get tubes put back in, which I’m a huge fan of. This means the infection will drain out of his ears instead of sitting in his ears growing.  We have an appointment set up for Friday to do a check in with the pedi to make sure this new antibiotic is working then another appointment with an ENT to discuss tubes.
So, we need to get all this crud out and Will healthy so that we can do tubes asap.
The hospital visit was overall good. Will did great and so did Neil. I had a big huge project due by Monday at 5 p.m. and had to go in to finish it. About 3 p.m. my manager was able to pick it up and get it out the door. So, I raced over to the ER to meet up Will and Neil. It sounds like the ER was pretty traumatic… they had to get about five nurses to hold Will down to do an artery blood draw from both his wrists, then drew six vials of blood, put in the IV and finally he got a break. It sounded like he was crying for me the whole time as well which of course makes me feel super guilty, sad and overall sucky. Plus, Neil also is sick. Wonder where he got it from…
If you’ve read the blog at all, you probably understand that mito is a messy complicated disease. Well, just because doctors go to medical school doesn’t mean that they understand it either. Case in point, the ENT that came into the room at 10:30 p.m.  and turned on the light, actually two lights. Yes, 10:30 p.m. well after the time Will and I both have gone to bed. I got the vibe that essentially didn’t understand why we were even admitted. And left the conversation with the commentary of, so, basically he has a cold and an ear infection? Yup, you a-hole. A cold. A cold that could leave a big ugly lesion on his brain and tomorrow he could wake up and not be able to walk. So, screw you.
I mentioned it to the awesome on-call doctor and she said, “yes, he was confused. Clearly he didn’t listen to anything I said before he went in to the room.”  At least one more person was educated to some extent about mito and maybe the next person will have a different experience.
I shouldn’t whine because really this was an “easy “ER trip. It’s just Neil is sick. Since this is technically "my blog" I can lovingly say that his hacking cough is driving me (and him) bonkers, Will is sick, I’m tired, Will hates this new medicine – he has to take 10 MLs of it orally – and the past two nights he has gagged and puked up a little bit. He had a nasty loose stool all over the car seat. I’m behind on a lot of stuff – appointments for Will, getting the rug cleaned that our dog smeared poop all over. It’s been sitting on the porch for like a month. As the super annoying MTV character Snooki says, “waaaa”.  I just want the snot to go away.
On the positive side, Will has been a real sweetheart. Just as sweet and loveable as can be. Children’s Memorial Hermann is a teaching hospital so whenever a doctor comes in, they bring about 20 more in. Since we were in isolation everyone had to wear masks and gowns. It didn’t even phase him. He just took it in stride and told everyone hi and bye and thank you.
The child life specialists at the hospital brought in some fun toys - Will kept pushing this dog around saying, actually YELLING, I lovvveee my doggie. It kept him occupied for a long time. Not much else you can do hooked up to the IV and in isolation.