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.

Oh the things you learn while inpatient

As we were sitting in the waiting room of the pediatric OR yesterday morning I couldn't help but over hear the stories of what other families were there for. Eavesdropping is, admittidly, one of my favorite things to do when in this situation. I love to listen to other people talk about their life issues. I know it's bad, I know it  makes me a nosey person, but ya know what, I don't really care. It can also put my life into perspective, you can realize that what you are currently going through is nothing compared to what others are going through. The last time we sat in this waiting room there was a family with a young child going through brain surgery to remove a tumor, Zach was getting his g-tube placed....made Zach's surgery seem like nothing. This time it was the complete opposite. We had to sit near this couple who were obviously lower income (not judging, just stating), their (I assume) infant/toddler was in surgery and they were obviously very concerned as this was apparenetly his second one (all gained from eavesdropping). When the doctor came out to talk to them I was a little floored, and slightly irratated by their behavior, when I heard the type of surgery their son was in for and some of the questions that followed from the parents. Simply procedure, common procedure, procedure that fixed immediately what the problem was and the child would have no further problems. You would have thought their child was having major surgery, might not survive it, would have life long complications with how they had been acting. I understand that all surgeries, especially at such a young age can be complicated, and I realize I am probably a little jaded when it comes to the simple problems in life, but seriously these people where overboard.

As I was falling alseep last night I realized a few things that the day had taught me.

1.) There is always someone worse off then you. This time, from the conversations around us, we were the ones "worse off". The simple procedures, the fixable problems, the minor illnesses that go away in short periods of time.....there are so many days that I wish for those problems. Instead we were handed Cystic Fiborsis, a life filled with daily meds and treatments that take up hours of your time, chronic respiratory infections that can kill, ruined summers/holidays/vacations, lengthy hospital stays, countless clinic visits, panic when lung functions drop below optimal, always wondering if this is the beginning of the start of the decline that will lead to oxygen tanks and eventual lung transplants (yes I am a pessimist).

2.) Doctors "forget" to order/do things. Yup you read that right, they forget, they are not perfect. We had planned with the doctor for Zach to come in and have a brochoscopy, have all the crap cleaned out of his lungs, have a PICC line place for 3 weeks of antibiotics, stay here for 2-5 days and go home with PICC for remainder. All the doctor put in the order for the OR was the bronchoscopy, didn't surprise me there the last time we were here they "forgot" to put in the order for him to be admitted after the g-tube placement. Once on the floor, talking with the respiratory therapist we realize that the doctor had also failed to order the new nebulizer that we decided to start Zach on during this stay. All in all though everything did get done that was suppose to. I guess our new CF doctor is known for not putting orders in and saying "oh yeah, by the way, we are doing this too". But I like him, he is aggressive, proactive and he listens to us.

3.)Momma instinct are ALWAYS right! I told the doctors MONTHS ago that Zach needed a tune-up and they kept handing him oral antibiotics because he wasn't culturing anything new. No he wasn't culturing anything new but his cough was horrible and wouldn't go away and he was not himself and he had lost a 1/3 of his lung function.....1/3!!!!! That is a HUGE lose for anyone especially a CF patient! I was vindicated when the doctor came out of the OR and told us that we had made the right choice. He had removed "copious" amounts of thick yellow mucous from Zach's lungs, lungs that were severely inflamed, lungs that looked like crap on x-ray, lungs that could NOT take deep breathes. All this mucous was just sitting in his lungs, causing damage while doctors played "I know best" with my child's health. And just because his sputum/throat swab wasn't showing nothing new growing that doesn't mean that there isn't something different in all that crap they  just removed from his lungs (still waiting on those results)

4.) Sometimes nurses just aren't a good fit for certian floors. Our first nurse yesterday was floated to this floor from her normal floor. I don't think she has had a lot of hands on experience with CF kids or their needs. Don't get me wrong, she was a good nurse, but when she looks at my 14year old CFer who is refusing to eat his dinner because there is cheese on his hamburger and she rolls her eyes and says "can't you eat the cheese" and then proceeds to tell him "I'm sorry the kitchen closes at 7 (he was alseep when his dinner came) and we have no other options for you". Can anyone tell me how many mistakes where in that sentence of hers???? 1-never roll your eyes at a kid just because they are a picky eater. 2-never tell a CF kid, or really any kid, that they will just go without because "there are no other options for you" and 3-THERE'S A NUTRITION CENTER ON THE FLOOR THAT HAS "SNACKY" TYPE FOODS (mac&cheese, cereal, pbj etc.)! Needless to say momma found a pizza place nearby that had garlic pizza and that was what Zach had for dinner.

Let's see if day 2 inpatient teaches me anything more :)