Weekend Update, Including Chris not wanting me to leave & Cruises Around the Hospital

Saturday morning... I woke up at home and went ot breakfast with my parents. They dropped me off at the hospital around 10:30am...
I got there and Chris was up... Dr. Strair had already been in -- Chris told me that Dr Strair told him they were changing some meds around for his tremors... I knew this the day before but I wasnt sure if there was anything brand new... and Chris was not sure either...
Valsa was his nurse and I told her I wanted to talk to Strair if he walked around again...
3 minutes later, Strair was in the room...
He gave me an update... Chris is back on Neurotin- should help with tremors. They took him off Cyclosporine, which I knew... replaced by an anti-rejection pill. Cool. They also added another pill to replace the blood pressure med that they had him on
Strair basically said they would see how the Remicade is working and add another graft vs host med before the end of the week if it doesnt work
He had to get to his rounds.. but I asked him if I could wheel him (in a wheelchair) around the halls and whatnot to get him out of the room. (I had asked head nurse Nicole this yesterday)
And he thought it was a great idea. Strair also mentioned that morphine was on the orders when he needs it.. but nothing else... sounds like Strair wants him to stay as un-medicated as possible... Ativan is on order for anxiety, which can also help with sleep

So, Valsa un-hooked Chris from the I-Vs and I took him out of the room. The nurses were like "take him down to the lobby for a while" Soooo me and Chris got on the elevator and sat by the fireplace in the 1st floor lobby... I wheeled him all the way down to the Childrens Hospital.. then down to the atrium.... we stopped on 5north to see his old friends up there... we saw Jolenta...
Then we had to get to the 4th floor for chris to take a bathroom break... but when he was done, he wanted to go back out for more cruising... yay! So, we rode around all around the halls and then we came back... he was tired. Oh, at one point, Chris's pumps were beeping. So we called the bell. The receptionist hear them and acknowledged them when we called. I saw no nurses at the desk. I was pretty sure a lot of them were eating in the lounge.. which is fine.. but someone is covering... patients still get care during nurse breaks... I literally pushed hold 8 times... Each push gets you 3 minutes. Chris called again ... we waited... finally the nurse comes in and starts saying "I cant give you morphine.. i already gave it to you.. blah blah blah" So I interupted and said "thats not why we called... his machine has been beeping" She looked sorry.. but why wasnt the correct info relayed? I feel bad cus when I am not there, that machine beeps and beeps and beeps.. even chris was vocalizing being annoyed...
So, I had my dad come pick me up around 3pm and chris napped. When I got back a few hours later (7pm or so) Chris was excited for another ride!
The tech (someone I never saw before) was cleaning him up and then told us his nurse said maybe we should do it tomorrow instead. Chris was bummed. He was looking forward to the riding ever since I left. Sophie came in - she was not his nurse :( I told her he was bummed. Nina was his nurse but when she came in she said he could go as long as he was back by 10pm... that gave us 2 hours.. woohoo... We love Nina too... Chris does very well with her... She has a way of getting him to take his drugs easily and listens to her... She is a sweetie...
So we went for another ride. We went back up to 5north and were lucky to see Mary and Ade... his 2 favorite night nurses on the 5th floor. We finally got back to the 4th floor and Chris was able to get to sleep much easier....
Ade came up to visit later but chris was asleep...
Even though the diarrhea had eased up during the day, he had a rough night :( I slept there and he was up often. Luckily, he was able to sleep for a few hours before the diarreaha acted up...
Again, at 8am Ade came to visit, but Chris was getting cleaned up
We even saw Vanessa and Dustin, 5north techs Saturday night and Chris was happy to see them

Now it was Sunday morning. It was Christine Rabbath's birthday. I told Chris the day before and Sunday morning, that I had plans with Christine, our moms, and Dana, to do lunch. And, Christine was going to help me organize all Chris's bills, paperwork, etc...
So, Sunday morning, Chris finally recovered a bit from his rough night. Strair came in to see us. He asked who from psychiatry had been in to see him already. Chris said no one. Strair said someone would be coming Monday. He agreed Chris needs to feel better mentally...
He said that the graft vs host is only in the GI tract. So thats their concern. (I was thinking, atleast its not in multiple places at this point)
He said that if it wasnt better by Monday, they would add the new drug...
He was excited to hear Chris was getting out in the hallls (he saw us up on the 5th floor yesterday) He said "see you out in the halls later then"
Oh...
Dana gave Chris a shirt. I brought it to him Saturday. It says "Colorado.. Hows your Aspen?"
Get it? Hows your ass been? funny?
Chris loved the shirt
So I showed it to Dr Strair on Sunday morning. He got a kick out of it too
He said it would be great for him to wear once he is out of the hospital
We showed the nurses the night before. they got a kick out of it too

So, Sunday Strair was done with him and Chris wanted to go for a ride before I left. I had to leave by 1030am to get home and showered. Then be back in the evening

So, Chris calls for help. While we were waiting, we decided to try it alone.. you know.. the long wait.... I only had an hour or so. Chris put his arms around me and he stood up and I helped him into the wheelchair. Rose came in and she disconnected him -- we went a ride... back to childrens hospital.. back to 5north,... back to 4th... around the hall in circles...
Then i brought him back to his room... I told the nurses he was ready to get out of the wheelchair...
Chris looks sad. I asked what was wrong. He said he was not ready to go back to his room
my heart was BREAKING.... I wanted to cry... A few days ago he was kicking me out.. now he was loving the rides so much.... so Paula came in to help with wheelchair... but I mentioned to her that he was sad and she offered to take him for a ride.. i thought he was going to leap for joy.. he was like "lets go" so that made me feel better as I was leaving
This is exactly what I fear. I leave every weekend to do my things at home.. and he is usually like ok, whatever... but when he is like this, i feel so bad....
its not like the nurses have time to just be wheeling him around...
It is motivating him to keep up with physical therapy.. when we walk around, he says "walking next" or when we pass by the doors to outside he says "they will be my doors soon" Poor guy.. cant even imagine what he feels like.... but i am happy i can take him downstairs...
Anyways, I feel terrible that he doesnt want me to leave. It would have been a great time to have a visitor who coulda wheeled him around. A few weeks ago, visitors would watch him sleep or get very little conversation time... now he can be more interactive...

I had a great lunch with the Rabbath women and babies. Then Christine was a tremendous help with the paperwork. Ben & Sean are so cute. Ben loved his presents (we finally did Christmas presents) and then I went back to the hospital
I called rose on my way -- he was unhooked when I got back
So, we did a 2 hour ride again Sunday night.
I brought him Dunkin Donuts tea (he cant have coffee right now) and we had a date with tea as we rode around... the nurses were excited to see him in the halls... Carroll hadnt seen him in a couple days.. and Jen..
Oh, the night before, Sophie gave him chocolate, orange jelly, Polish candy.. shhh... didnt seem to do any damage.. but its clearly not a clear fluid... he was loving it...
So anyways, last night, Sunday night, after our long walk and stuff, he was tired... so we got him in bed and Nina was his nurse again... we had a good night... he fell asleep.. I slept over...
He only needed to go 2 times overnight...
This morning, we woke up and Karen is his nurse.
She wanted him to get up into the chair so early... intentions are good. but i know he wasnt ready... he wanted to get in the wheelchair and ride but not til the doctors did rounds so he could be done with that.. but she talked him into getting up into wheelchair.. then we waited and Chris was getting frustrated cus he wanted to be disconnected and go... Karen didnt realize that... Dr Strair had today off (i guess for holiday) so Dr Gahribo was seeing him.. but Strair was in the halls all day.. weird.. that man never gets a break... God Bless him

So, Gharibo sees him and is happy to see him in a wheelchair.. she says they will monitor bowel movements one more day before deciding.. also the psychiatrist is not coming (holiday...) bullshit... chris really wants to see him...
so tuesday supposedly.. i have been hearing "word" of this for a week... i think tomorrow it will really happen though

So Karen unhooks him and we are off... I am feeling very tense... he really needs to get out of the room.. he enjoys it.. its good for him mentally.. and i run into an obstacle after a breeze.. after an ostacle...annoying.. i think i come off as snotty but i dont care.... i dont know what to do

So, we get back from our walk. We saw Sharon. Chris initially was going to go into the recliner but was wiped from the walk.. so he wanted bed... Karen and Jen come in to help move him... and were talking about him going to chair... he isnt saying anything.. so I had to ask him if he wanted to say anything... he was JUST arguing with me and insisting he was too tired to sit up any more.. so I feel like the bad guy or the bitch for making him talk.. but i could tell he was uncomfortable... If i felt he was being lazy or silly i would keep my mouth shut

So, he rests briefly and agrees to eat some lunch
I go to warm up his tea and broth... and the toast he is now allowed to have... and they tell me physical therapy is here for him... its noon.. he JUST laid down after being up and about.. i am fuming internally... She comes in the room as I am giving chris his lunch and nurse says maybe do therapy first.. i want to scream... he needs to eat... first time all day... and he needs to get a break.. and what happened to PT being around 1:30 everyday? how can he plan? He is supposed to do his own getting around when they arent there... ya know?
So, PT notices lunch and she says she will be back in 15 minutes...
whew... So I told Chris he needs to speak up.. I feel like I look like the blocker or the bitch for opening my mouth and he told me he would and stuff... he also told me to go rattle some chains...lol.. he was annoyed about the inconsistancies
So... I saw the outcomes manager nurse Elena and spoke with her.. and PT...
Chris did physical therapy and I watched... She asked me to follow him with the wheelchair as they held him up with chris holding the walker... I was confused.. there was NO room behind him for the wheelchair.. and why??? arent they supposed to make sure he doesnt fall? ugh
So, i am looking at the foot rests on the wheelchair and i am thinking.. if he starts falling.. the wheelchair isnt going to catch him.. his butt will never make it to the seat... but i shut up
He takes a few steps slowly.. i am proud.. but it sucks how hard it is for him
Therapist told me he was able to walk a bunch more steps than that last week but its ok, meds and stuff cause weakness to fluctuate during the progress
So... he gets weak and is falling... i had to fight to get chair behind him.. "told u so"
Anyways... before falling into chair,, he was getting dizzy... she told him his body is not used to being in that position... so she asked if he could do leg exercises and he did... the dizziness slowly went away
She didnt stay too long.. asked him to sit in wheelchair for a while.. mentioned sitting there for an hour and having lunch in the chair.. ummm he just ate duh...
anyways.. i sat hext to him until he was ready for bed...
He finally dozed off and the rehab doctor came.. DO WE HAVE TO WAKE HIM UP? are you that important? i mean, he isnt going to rehab that soon...
so he is alarmed at being woken up...
Then Occupational Therapy came and he was just beat...
He had more diarrhea... so i guess we will see how the night goes and they will make a decision about new drug tomorrow
ugh... I feel so bad for him
Chris started to freak out a little bit and i calmed him down...
Isabel is back tonight.. love her
He is sleeping now..
I am gonna get going.. I have been here for 27 hours... time for home.. time for dinner and Rex and shower....
I pray her has a good night... maybe we will get a miracle and his diarrhea will stop tonight and tomorrow will be better.. new president new health? I hope...

Tonight he said "come here and make me not freak out" so i did.. gave him the pep talk... i begged him to sit up whenever he can and take deep breaths.. reminded him how high risk he is for stuff and pray he continues to be motivated... ugh... i told him to occupy himself more during day so that he sleeps easier at night..
but i just want the Graft Vs Host to settle down

He said something funny to me earlier...
He was saying how perfect i am.. something about having me in his life now and whatever.. anyways.. i wish i could quote it.. but he said something about perfect cheesiness... and said it was like something perfect and then adding cheese and melting it and it being so yummy and good..lol.. he said it was a food metaphor.. very cute.. but funny...
Oh, and Olivia is a child prodigy.. she plays the piano like a champ... girl is going to juliard one day... jeanie sent me a video of her playing piano yesterday and chris and i were both super impressed

Well, tomorrow is inauguration. i hope i can see it somewhere at work... not sure if i will get out to see chris at lunch.. so i am gonna try to see him in the morning before work...
I will pray extra hard tonight... there are a lot of people who need it... Jeanie's friends & everyone...

love you all
jenn