Saturday, July 11, 2009

Day Before

As my friend Lynn put it: Well, here it is, day before the windy city. We returned home last night about 10:30. The hospital is never fun. I am developing a pure hate relationship with it. Gary has been that way since day one. Everything went fine. I knew this was going to be tough on both of us. We usually need two or three days to recover after overnights in the hospital. But we fly out tomorrow. Good news, Gary's levels are still heading in the right direction. They are not 'normal' but improvement is still good. Especially with the improved strength. Getting pumped full of IVIG and steroids and chemo drugs is never a picnic so the past couple days to say he is doing good isn't accurate as far as feeling icky from everything. I do know one thing. My poor little baby reminds me of a balloon. He is so big! Rob and I went had gone and bought him a few outfits for the summer and last night he looked like he could explode out of them at any minute. It rather cute but if it were me, I would be beside myself.

I have to say it was interesting this stay. I am completely out of the closet with going to see Dr. Pachman. I talked about it openly and freely. I noticed there was a change in care. I am not imagining it (you know my imagination, works great). We met a doctor we have never met before, I mean I most definitely liked her, but I wonder after three months of care, (I mean we are talking after being there 70 out of those 90 days, ok so not that much but close to that ratio) don't I at least get to rotate the many doctors we have seen? That's fine. There wasn't a disregard in any way. Gary still got his care, but there was a quality that changed. I suddenly was having to ask for things more than once. I asked one of the doctors (he was a fellow so still learning I guess) for a note for Gary to ride the plane. You know, something that says he is safe to fly. I don't anticipate any trouble with that but just in case I want to be prepared. Didn't get it. Then the nurse I have been chatting with about going to Chicago, gave me more warnings. Uuuuugghhhhh. Thanks for the anxiety. She warned me to remember that sometimes Dr. P is about the research aspect of this disease. She tends to want and apply's the same treatment for each patient. She also warned that she will have tests done that insurance doesn't cover and Seattle doesn't use. What do I with that? So suddenly was filled with all this doubt, and should I go? But I was distracted with trying to chase after everybody trying to get stuff done for the trip and for Gary. My distraction dissolved my anxiety and fear. By the time we loaded up to go home I was tired and angry. During rounds, the doctor looked at her interns and said, "Mrs. Bradford needs his latest lab reports, blood counts, clinic notes, ect,. please help her obtain those. She is headed to Chicago for a second opinion." Hmmmm I thought. I just might be paranoid but did she say that in a way? I interupted her and said, "no it is not a second opinion, not at all, it is just a wise consult." After asking all day for someone to get those reports to me so I could take them with me, it was 5 o clock on a Friday. They had all already hit the pubs for the night and I was getting fiesty. Not to mention all delays. Delay in delivery of medication. Blow IV's. I am sorry to be so whiny here but really people, no I do not want to poor his pee pee from a bag into a cup. Why would you ask me if I wanted to do it. I suppose after all these times staying in the hospital we have been lucky we have not had more experiences like this. I could go on and on. Like the pump to feed Gary was malfunctioning. It was NOT working. She had me sit by the pump and turn the alarm off and hit continue every time it went off. Every time she came back in I said, "it is NOT working". For thirty minutes I was patient, this was on top off holding a screaming, dripping with sweat, hooked to tubes and wires, two year old. The steroids drive him crazy! I asked for Tylenol and they walked in and of course handed it to me. I just giggled because after awhile, its all ridiculous. I asked for benadryl . Never got it. So I went into my own stash of medication and got my own. He was better after that. Then I finally got my pump out and hooked up to our home pump. I mean I did have my nurse running around finding my reports. I told her I wasn't leaving without them. So frustrating, I had to explain it over and over again, and they just look at me like I need an interpreter. Someone comes in for the clerical station explaining that Health Records had gone home and I need a release. I already did that I explained. I was starting to feel sorry for the next person that came in trying to pass the buck because I was about to take my Christian pants off and get mean. Tired, hungry, frustrated, not a good combo for a Mama Tiger. The nurse eventually got what I wanted I think. After idiotic banter with the intern, who did not come in and see us off like they usually do (hmmmm? wonder why?), I was ready for home.

So today I need to wrap up last minute details, get all my records together. My little sissy doesn't get off work till four and our plane leaves at 530, so we will be running tomorrow. Since we are checking in at the last minute, I need to try and get everything into a carry on. All the formula and his meds, should be interesting. It will take precise organization of space for this to happen. Tomorrow I want to try and get the house clean for when we come home. You know how it is. I hate coming home to a messy house. My wonderful sister and brotherinlaw are taking the kids camping so I want to go get a few things to send with them. Yes, I am stressed, but very much blessed!

*Fun tid bit: Last night I was pulled over in Black Diamond because my headlights were not on. I had them turned on but for whatever reason I didn't notice they were not actually on and working. (Reason was I was so tired). It was fun. Only because I did not get a ticket and the officer was nice. I am sure he was just checking to make sure I wasn't drunk. I had gotten flash just before I passed him. I thought, why is he flashing me? I started looking at the road, and was figuring out what was going on as I passed him. I thought, well, if he doesn't pull me over, I guess they were on after all. I am glad he didn't drag me out of the car, step on my head and tazer me. Would have put a real damper on things.

1 comment:

  1. To be considered a friend, especially since we have never met, is an honor and tribute to our heavenly Father. He will never leave us or forsake us, through the good times and bad times. Erika, your rough day at the hospital and ready to take off your christian pants, is a testimony to the love you have for your child. The staff at the hospital deals with this everyday, and you are only one small portion of what they have to deal with. I know it is a small consolation, but at the end of the day, by leaving your "pants" on, you could be the only brigh spot they have. Know that as professionals they are doing the best they can. I suppose I could tick robert off by asking to talk to Stacie instead of him once in awhile, but know they are doing the best they can for Gary. I should close now before the comment gets too long winded, but fight the good fight and trust the rest of the way....... Lynn Proverbs 17:22 enjoy!!