Lately(before admission) I've been getting really frustrated with this hospital. I feel like i'm never heard, there isn't a plan for Hannah's health and they aren't pushing to get ride of things. It was to the point where I was strongly considering switching hospitals because not only did I feel that I wasn't heard and she wasn't being pushed to get better I also didn't feel like the way they were going about things was right. Like doctors not talking to specialist, tests being run to make sure the changes weren't hurting her.
Two or three times ago that the Jtube fell out I asked the doctors and nuteritonest about testing a Gtube and got shot down. One person even fought with me when I told them that Hannah had a gtube for the first year of her life. Since Hannah wasn't in this hospital when she had a gtube, they didn't see it and wouldn't believe me. The idea was shut down instantly.
When Hannah got her granuloma removed I asked the ENT to please while he was doing the bronchoscopy to please check her vocal cord functions and take a look at her lungs. Since he was going in already it would be nice to know how shes doing and not have to set up another appointment. Didn't check any thing.
End of july I contacted her doctor about setting up a sleep study to test Hannah off the ventilator, they said they would get back to me in a few days. In that few days she started having ventilator troubles because there was a large leak from her trach. 2-3 weeks later I still hadn't heard from them so I had a nurse email the doctor with all of our concerns. Nothing was dealt with in that email, no date set up. Felt like the didn't care. They told us the PICU was full and to contact the ventilator company because they thought it was the ventilator, even though they hadn't seen Hannah or the ventilator. Two weeks after that when finally I demanded I be given at least 3 weeks notice to when we were coming not just be told the week of. We were told maybe come on the 22nd but not to book off the nurses because the date might get pushed back.
I know a sleep study isn't life threatening and it is a small PICU, but we still deserve to have the medical attention we need to live a healthy life. Sooner rather then later.
So the point of that story is I was coming to the hospital expecting the worst prepared to have the doctor once again blame the Jtube falling out on me and my nurses, to not be listened to and feel like we got the bare minimum care. But that wasn't the case this time! We got to trial a Gtube WITH OUT ME SUGGESTING IT! I think that's almost the best part.. (almost ;) the gtubes still the best part). We did the sleep study and it went great. WE TALKED ABOUT A PLAN TO DECANNULATE! Quickly, but I heard it and now know and estimated amount of time as long as everything goes smoothly.
- Hannah naps with out the vent for 6 months
- Comes back for a night time sleep study
- Few months after that we start working on decannulating ( smaller trach, ect)
The G tube feeds have been going fantastic. Shes on normal strength formula at a rate of 50ml running 24 hours a day(right now) and not puking, amazing. The night nurse started a few hours ago and told me that last night in the middle of the night the GI surgeon(who I swear just hates us) and was pretty peeved that she was getting feed via gtube. She made them run half pedilate half formula for longer then the original plan was. Since Hannah was doing so good she had no right to say stop the feeds untill she could have the jtube put back in. So I will be FOREVER great full that we came in late Friday night and there was only one doctor working to make all the calls or nothing would have ever changed. My home nurse said earlier on Friday that everything happens for a reason and I'm defiantly feeling that right now.
The other day I was thinking about how it doesn't make sense that Hannah needs her vocal cords to breath. I know its a proven fact you need them to breath. If her vocal cord is stuck open, how is she loosing air with every breath but not with a trach? There isn't a valve in the trach that closes every time you inhale. So I asked the doctor on why you need your vocal cords to breath. She said its because usually there stuck shut and you have a hard time breathing in air around it! Which is not how I was told Hannahs vocal cords were so I asked her to check her old files. There isn't any in this hospital she'll have to get the information from children.... I hope i'm right and that what I was told(or think I was told) is true, ill have so much faith in Hannah's trach coming out.
I don't know how much longer we are going to be here for, probably fine out tomorrow. We need to get her pulmonary hypertension checked (its been a year :|), and I spoke to the doctor about getting the ENT to take a look at her air way and vocal cords. So either we will be here till thursday or we will come back around the 26th.
|Missing my other H|