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!