Saturday, August 1, 2015

Day 2 inpatient with Zach. Today at least the majority of the nurses and other staff that took care of him where competent and nice....Well until the over night shift, then they slacked a little. I woke up at 4am to his feed going off. I checked to make sure it wasn't twisted or crimped off and then I looked at the machine and realized that it was done. So I buzzed the nurse and 10 minutes later no one came so I unhooked him myself (I was not going to let all that air pump into his stomach). A nurse never did come.

Woke up at 6am in pain, because these pullout so-called "beds" for parents suck ass and my entire body hurts. Walked over to Dunkin Donuts and got my much needed coffee and when I got back there was a tech outside the room so I told her I unhooked his feed at 4am and she said she would tell the nurse. Nurse comes in and says "oh I had to add more to it, that's why it was going off"....ummmm then I guess you should have answered the call bell instead of just turning it off! I have no idea why they didn't just put all the feed in the bad like we do at home, but again, answer the call bell instead of just turning it off!

Being stuck in a hospital room all day sucks. It's always a crap-shoot of whether or not Zach will be allowed to leave the room. Last time we were here, he wasn't allowed to leave the room, his admission in Florida he wasn't allowed to leave the room, in Denver he could leave the room as long as he wore a mask (for his protection). He hates it when he can't leave his room, so we once again asked what the protocal was here. At first we were told no. Then we were told yes. Then we were told "wait and let us talk to Doctor and see what they say". When it was all said and done the decision was yes he could leave the room masked up (for his protection).

So of course he didn't want to leave the room, let alone the bed, since he had permisssion to. When he isn't allowed to roam the halls he gets pissy that he is stuck in the room. You just can't win sometimes. I finally made him get his butt out of bed and go for a walk with me, he needs his excercise, his lungs will not get any better if he doesn't move around.

We have learned that he is extremely sensitive to Vancomyacin. He experiences what they call "red-mans syndrome" it's not an allergic reaction, just a side affect that is extremely annoying to those who experience it. With his 1st dose I thought he was going to scratch his scalp off, then his entire face turned red. I knew what it was because he has had Vancomyacin 1 other time and it happened.  So they gave him benedryl and decided to run it slower (over 2 hours instead of 1). 1/2 way through his 2nd dose (with a dose of IV benedryl before) he starts itching AGAIN. So they once again slow it down even more (over 4 hours) and up his benedryl dose.

 OK so each dose is suppose to START 6 hours apart, so running it over 4 hours means that 1 1/2 hours after 1 ends he needs to have an infusion of the benedryl then start the next dose. While this may be good and feasible in the hospital setting, I was stressing about how the hell I was going to manage it at home. That's a lot of remembering and timing, and I know I would NOT be able to do it exactly on time, I have way too much other things going on, but I would have figured it out if that is how we got sent home. Thankfully we had a very good case-worker who said "hey do you realize what you are asking this family to do at home???" So the doctors and pharmacy and case-worker worked out a more feasible plan. Now Zach will go home with a continuous infusion of the antibiotic, with it running this slow we are hoping for no reaction and no need for the benedryl (it makes him sleep ALOT).

So last night we started with the continuous infusion and no benedryl. He did not like the idea of not having the benedryl, but we explained to him that the minute he started feeling itchy or anything else he could have it. It has been about 14 hours and so far no reactions. WOO HOO.

The home health agency came in last night to show us how to use the continuous pump. It will suck for him to have to carry it everywhere, but he will just have to deal with it. This disease is not going away anytime soon and I am sure this will not be the last time he is stuck with this antibiotic and continuous IV for it. MRSA can only be treated by a few things and he is allergic to the other main antibiotic.

They also decided to start him back on hypertonic saline nebulizers. He did these when he was about 7 and could not stand them so they were stopped. He is not happy with having to do them and has flat out said he wont once he goes home. He just doesn't understand how much it will help him to conitnue doing them. It helps break up all that crap in his lungs so he can cough it out. The doctor took a video while he was doing the bronchoscopy the other day so I asked him to bring it so Zach can see what the insides of his lungs look like. I am hoping when he see's how nasty they were he will understand more why he has to do the things he has to do.

These are the times when we really hate CF. The times when it steals our summers, ruins any fun we could have, and ties him down to a machine to make him better. This is the life we will continue to deal with until they find a cure or it steals him away from us.  We have no choice but to ride the roller coaster continuously until one or the other happens, we hope and pray that they find a cure soon.

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