Friday, August 31, 2012

A Sigh of Relief

Both surgeries were over and were successful. We can officially let out a sigh of relief. Her poor little belly is looking kind of funky at this point but it'll be completely worth it if it works.

Everything happened on schedule and as expected. About a half hour into the scheduled time, the anesthesiologist came out and told us they couldn't get an IV in so they had to put in a central line. We saw that coming because the poor kiddo just has horrible veins. Any she does have have been stuck so many times they're pretty much useless for IVs. About two hours later, the ever-awesome Dr. J came out to tell us it was complete and he was satisfied. He said her hernia was "pretty significant" in the left side, and the right side was very small but still a hernia. The vesicostomy is a little higher than I expected, but overall is pretty small. I can't wait until it heals up more though so it's not as yucky looking. It's pretty simple to take care of, we just stick a little blue thing (it kind of looks like a very small wine stopper) in twice a day to keep it open. It drains pee constantly though, so we are working on strategies to prevent all the leaking. She woke up soaked this morning, so double diaper it is tonight.
We are having some negative side effects right now though, but her doctor thinks it's just anesthesia  issues still. She hasn't been able to hold down much food today. She also hasn't gone #2 since yesterday afternoon. They were nice enough to call in a script for Zofran for her nausea and (eew) a suppository for her other unpleasant issue. I told my husband he had to do it because I wasn't cutting my nails! I really don't want to cut my nails, but truthfully I really don't want to be the one to give it to her more. Hopefully these little treatments will get her feeling better in no time!

We really hope this is the last surgery we have to go through in a very long time and that it keeps us out of the hospital. My little girl isn't so little anymore, she turned 7 months old last weekend and I feel like we've spent way too much time away from home! I am ready to get to our version of normal. 

If any of you have hints for how to keep the pee IN the diaper, please pretty please drop me a line. I want to order a belly band for her but the one place I know where to get one isn't taking orders until at least September 15th, and that's a long time.

As always, thanks to our awesome supporters who pray for us, think about us, and provide more help to us than we could ever imagine. We love you and I look forward to posting good news from here on out!

Sunday, August 19, 2012

The Pain & The Stupidity

By pain, I mean a pain in my rear end, and by stupidity, I mean life in general.

We finally got released from the hospital again Wednesday. Of course they had to do it on a day my husband worked, forcing him to take another FMLA day. It's worth it to have our little one home, but it's annoying that we had Friday through Tuesday where one of us could have taken her home and they pick the one day we really couldn't. After getting the sleep study completed, we've learned two things... One is that her skin is soooo sensitve and now she has little tiny scabs where all the probes were. She looks like we commit some kind of cruel and unusual punishment.You can see all the tiny red marks in the picture. The other thing is, and this is the big one, she has.....(drum roll).......Breath holding spells. GASP!!! Oh wait, we knew that. And so did her pediatrician, and her neurosurgeon, and the PICU attending, and.... The list goes on and on. So you see where stupidity comes in to play. We wasted four and a half days waiting for a sleep study to show us this. Those results are just the sleep study side, we are waiting for neuro to look at the brain waves too, but I'm assuming since we haven't heard anything from them, there's no immediate danger.

It is unfortunate that we got the results back from the renal scan and it did show some scarring on her right kidney where her reflux is. We are already on a pretty rigorous cathing schedule, so the next step to protect her kidney is a vesicostomy. Obviously, I am not too thrilled about doing another surgery, nor do I want another ugly hole on my daughter, but her kidneys come first. This will create a hole near her pubic area that will allow urine to drain constantly, preventing anything from refluxing back into the kidney. We will no longer have to cath but will need to change her frequently and deal with pee being everywhere from what I read. Again, none to excited for this, but it has to happen.  Callie's hernia surgery is scheduled in a week, so we are hoping they can either do both surgeries that day or reschedule and do both surgeries another day.

In other news, we finally got Callista's nursing care put in place. We met the nurse who will be her primary yesterday and Callie seemed to get along with her well. She shared some smiles and even calmed down for her when she was crying. I am happy to know she is great friends with my brother's fiance as well. It's good to have some personal connections. While we are at work, we'll have someone at home caring for her, doing her cathing, wound site care, etc.

Perhaps now I'll have time to mow my lawn (sorry neighbors!). Most people have no idea how time consuming it is to have a kid in the hospital. It seems like maybe things should be less busy, since someone else is taking care of her, but the truth is, it just makes life more hectic. For us, I worked eight hours during the day, left work, drove to the hospital an hour and a half away, either spent the night or left late, drove an hour and a half back, rinse and repeat. Casey worked his twelve hour shifts and came to the hospital on every day he had off. One of us stayed with her at all times this stay, because we did not have a good experience nor much faith in the unit we were on. For example, one day I was there and they are supposed to be cathing her every four hours. She was due at 8a. I let her sleep a half hour more, and did it myself. No one came in to check on her, or to see if I did it until 9:45a. The poor kid was already admitted for a UTI but they'll let her sit there without getting cathed. Ugh.

Now I'm just hoping my little pumpkin is willing to take a nap today because I'm one exhausted mama!

Sunday, August 12, 2012

Mommy Dragon

Mommy Dragon- That's me. I swear I have learned to shoot flames from my nose and mouth just like a dragon. Do you think there are pink dragons? Because that's what color I'd be.

We are back in the hospital again. Callista has ANOTHER urinary tract infection. Wednesday she developed a fever of 101 and Casey had to take her to the ER. It is the same bacteria from two UTI's ago. It bothers me that urology was not convinced we needed to change her prophylactic antibiotic, but to me this screams that we're not treating what we need to be treating. She was supposed to have a scan to check her kidneys on Friday but it didn't happen so now that is Monday.

Also while we are here, for some reason unbeknownst to me, her breath holding spells, which have never been an issue for the past six months, have now become a HUGE issue. Usually we can get someone to listen to us during hospital stays but this stay has been by far the worst. I believe they've already got an idea in their head and they refuse to let it go. And so begins the drama.... For the first time in Callista's life, a tracheostomy has been mentioned. More than once. With NO diagnosis that supports even getting one. This has been our worst fear out of everything. We got through the shunt, the decompression, the feeding tube, but a trach is where I draw the line.

Now don't get me wrong, if she was lacking oxygen all day, every day, it would be the thing to save her life. If she randomly stopped breathing and didn't give any warning signs, it would be the thing to save her life. But these breath holding spells happen only occasionally. It's when she is very pissed off and/or in pain. At home, we have them maybe once or twice a week. In the hospital she has them much more because she is: uncomfortable, unable to rest sufficiently, constantly being poked and prodded, and often without someone familiar to comfort her. Worse yet, she usually does not go into a breath holding spell if you pick her up and cuddle her. I've yet to see anyone here pick her up, let alone give her some lovin'. The concern for these just started a few days ago when the ENT came to scope and make sure everything in the back of her throat was still okay. They had a tube shoved down her nose and were moving it around. She got angry and cried. They continued. She held her breath and desated. And so begins the drama of the breath holding.

She now has to do a sleep study to check for central apnea (uh, she never does it in her sleep?). It was supposed to happen last night but did not. Now it's supposed to happen tonight but I won't hold my breath-no pun intended. The worst part of all this is that the doctors only want to jump immediately to talking trachs when we don't even have a diagnosis of anything! They've mentioned tracheomalacia, but that does not make complete sense either because she's had many scopes and a bronchoscopy and none of them showed any abnormalities. Also with thracheomalacia, many infants have random blue spells where they're calm and relaxed and still turn blue. Callie does not do this. You always know when it's coming. It is oreceded by banshee screams and is no surprise to anyone.

This morning started off on the wrong foot as well because an ENT that I am not familiar with came in and reiterated why we were doing the sleep study. I asked him politely what options were available if she does show apnea (her apnea monitor has not alarmed once since getting it two days ago). Immediately he says "trach trach trach trach trach". Or, that's all I heard anyway. I asked him why they would jump to such a drastic measure first and this is what angered me the most...."It will be easier to manage her airway if she ever has one of these spells and doesn't come out of it". Excuse me?! I may or may not have (ok, I did.....) raised my voice that I was not going to do something drastic and dangerous (respiratory infections are HUGELY possible with a trach) and life altering to my daughter for a "what-if".I wish I'd said this as well; If that were the case, every kid would have a trach because what if they stop breathing? And every kid needs to have a full body x-ray, full MRI, and blood work weekly because WHAT IF.... Get my point? After my little outburst he had the nerve to follow up with "It's just easier". Well buddy, we didn't ask for easy or convenient for YOU. We have to do what's best for HER. On top of all this, I really don't think her sleep study will show anything. But additional thoughts and prayers are always welcome and needed.

I'm going to try to keep my dragon reined in today, but with canceled/rescheduled tests and ignorant people, it's a hard task to manage. I really hate this place, it brings out the worst in me. I think you can guess which animal I relate to.