Yesterday, I came back to the hospital after the Rutgers Job Fair at 315pm...
Karen was with him one on one cus she is training and Jen was technically helping.. but Karen was assigned to just Chris :)
He did his physical therapy and only had 2 Bowel Movements during the day...
They also did the bone marrow biopsy
They will have preliminary results Thursday or Friday...
They are checking to see if there is any sign of leukemia in the bone marrow.. or any infection
Nerve wracking.. waiting
At night, Jen was back and Chris would wake up and be so uncomfortable... he cannot get in a good position in that damn bed...
Thats his biggest complaint...
I left at 11pm or so... I felt so gross cus i slept at the hospital Tues night and hadnt gone home all day Wednesday until 11pm...
Today, Thursday, I went to work and came to see Chris over lunch. Nothing too new. Chris feels blah.. He doesnt even want to listen to music like he usually did.
He isnt acting depressed but i cant imagine how he wants it totally quiet... awwww
He did physical therapy again... he feels like he is getting stronger everyday.. but still cant take more than a couple steps and needs help to do that.. so hopefully by Sat/Sun, he will be better with that... i cant wait to be able to walk the halls with him
Anyways, i was told he went most of the night last night without a bowel movement *until 6am or so)... and today he had 3... so its not getting worse
At lunch, chris slept for most of it.. but Anne told me they still had no results.. were hoping to by end of day but maybe not til tomorrow
Well, I got here after work and found out there were no results...
Liz said she asked Strair but he said he was calling them again... and he had left.. so I assume he didnt get results cus he woulda come in to tell chris if he did...
So, I will be coming back here in the morning to see if they have anything before I go to work...
He had Liz during the day and she takes such good care of him... Jen is here again tonight and the consistancy is nice... she said he did good...
Now the damn waiting for these results..
Well, he is sleeping now.. so I am gonna get my stuff together and go home...
Lots of prayers tonight for good results tomorrow...
Tomorrow he also gets a 2nd dose of Remicade for the GVHD.. hopefully it starts making the diarrhea slow down...
Oh, and that kid who was next to Chris since this whole transplant.. the one who went home a few days ago... he is back :( diarrhea still... makes me scared but also realize that if chris were walking, maybe he woulda been sent home and had to come back.. that kid really pushed to get discharged....
ok, i will update tomorrow with results
love ya Jenn
Thursday, January 8, 2009
Wednesday, January 7, 2009
Meltdown, More Diarrhea... Steroid-Resistant Graft Vs Host...Ugh
So... I had left Sunday night at like midnight... Chris was seeming to be sleeping and ok...
Monday I went to work and went to visit over my lunch break... Anne, the Nurse Practictioner who is only assigned to transplant patients, tells me he had a meltdown shortly after I left last night... I do not think it was related to me leaving... he was just tired of not being able to move.. tired of being super uncomfortable in the bed.. and wants to go home.. apparently he was telling Sophie he was going to sign himself out... Sounds like he was borderline nasty.. not sure exactly what that means... And he loves Sophie... So I know that its not Chris... well.. its not the normal Chris.. Anne also mentions that they are going to put him on an anti-depressant to help him and that Dr Strair saw him in the morning and wants to talk to me and him about where we are in this process... Anne also mentioned that they talked to him about rehab for his physical therapy as an in-between when he leaves here... and she noted that Chris seems against it... so we talk a bit and then I went into Chris's room
Nancy is his nurse! woohoo.... she said he had been pretty good for her.. she is training a new nurse, Karen... Anyways, Chris is out of it and Nancy tells me that Dr Strair put him back on Dilaudid!!! Because Chris said the morphine wasnt working for his knees....
ooooh boy... Nancy is also not happy about this...
I went back outside and talked to Anne... she wasnt aware that the dilaudid made him hallucinate and all that.. She said she thought it was the Ativan.... It kills me that there arent some major bullet points on the front of his chart... a ton of nurses know about his dilaudid reactions.. the fact that he talks nonsense and gets knocked out way to much and just does really bad things not even realizing it when he has dilaudid.. Liz the nurse was near her and I was like "hey, ask her.. she has seen is first hand...." anyways... I explained to her that I really felt like he was asking for pain meds when he wanted to sleep.. .not so much for the knee pain he says he is having...
Anne switched it back over to morphine... I mentioned Sharon and Anne said she had been there earlier but Chris was sleeping. Anne asked me if I could come at 730am to see Dr Strair the next morning... she went on to say "well you tell us a good time.." I thought, hmmm.. yea,,, I know Dr Strair has clinic appointments all day across the street... let me suggest noon or 6pm...lol... So of course, I agreed to being here at 730am... Getting up at 545am is fun when I am already not getting a lot of sleep.. what the hell right? lol.. sorry venting...
I talked to Chris while I was there for lunch... he talked a bit... Nancy pointed out that she felt the anti depressant was a great idea... She said he needs it.. seems he lost some of his fight.. I agree... this is not the same old chris these days... Cant blame him.. you trying being stuck in a room for a couple months, stuck in bed for that matter... and going to the bathroom in a bedpan... you'd lose your mind probably... anyways, he explained to me that he is depressed cus he is stuck in there and cannot get comfortable and that he wants to go home... so i sympathized and he was actually his old self when i had to go back to work... told me to "get out of here so you dont get in trouble at work" and gave me a kiss
Anyways, I grabbed Bengay for his knees at home after work and went to see him for the rest of the night. My brother also came for a couple hours after work.. bought him a new Spuds dog... or snoopy... a stuffed dog.. ;) He is still kinda down. Sharon had come to see him and talked a bit but he was groggy
Tuesday morning comes. I get to the hospital just in the knick of time... damn 27 in Highland Park was slow as shit... and then the hospital deck was full... what??? i drove around behind slow ass cars and finally got a spot... then i get upstairs to his room and he was just telling the nurses to call me cus i might be late or forgot.. ugh.. i was 5 minutes late... and i gave myself more time than i needed... and my own fiance is doubting my ability to get there :(
Dr Strair comes in and basically tells us that his graft vs host is steroid resistant... It hasnt slowed down... Now, Aunt Ro had mentioned to me that Strair said on December 22nd, that it would be considered that in 3 days if the diarreaha didnt resolve... but now its 10 days later or so... and because it seemed to be a little better or at-bay when the lungs were getting better, i assumed things were slowly getting better... i guess not... and its affecting his skin (another common GVHD area) his face is sometimes reddish.. neck is a little discolored.. :( i wondered why some patients walking the hall had that coloring.. now i understand..
Strair basically said that this is "difficult". He told Chris that they will be giving another dose of Remicade (spelling?) on Friday. he got it once this past Friday.. a pretty harsh drug... and its only once a week. Anne did mention Monday that it often times takes 2-3 doses... Strair told Chris that they all empathize and that no one knows exactly what they are bargaining for... and that some people lose their will to live.... Chris said he has not.. he said he wants to fight..
Strair told him he has to get moving to get his strength back.. He said that this GVHD is rough and that it has him bed-bound and that he has to try to get out... and that it might help
(sidenote: this frustrates me to no end because he was in a chair on Thursday.. took a few steps... or was that Wednesday? all i know is Physical therapy didnt come on the holiday thursday.. i think they came friday and just did leg exercises... and they didnt come this weekend... i am sorry, but someone should be able to somewhat force him to move around.... his stubborness is from the drugs and his illness.. not because he doesnt want to get better.. and I tried.. i asked about PT on the weekend cus they were here on saturday for other patients.. but i got nowhere)
So, Strair went on to say that this is as difficult as before the transplant.. I assume he means to treat... and to deal with... I am not sure what the chances are that his GVHD wont get better or what else could happen (get worse) and I really dont want to know details of that right now cus this is hard to handle...
Strair mentioned that if it doesnt get better in the next 24-48 hours that they will add another drug to try to resolve it.. but that every med in this situation has its own side effects :(
He said these drugs can be like chemo (making you tired and want to sleep, etc)
Chris was not expecting this.. BUT i think what Strair said helped.... he seemed a lil more motivated to fight and when i had to go to work, he was sweet and i left...
I went home after work cus there was a chance of bad icey whether and i didnt want to face icey roads at 10pm or later when it would be time to go home. And i Have to be at rutgers wednesday (today) so i slept at hospital
Anyways, last night, Tuesday, Jen was his nurse... they were short staffed (down by 1 nurse, which is a pretty big deal in this unit)
Chris's diarreaha was a lil worse this night... and he was getting really frustrated because when he would wake up and realize he had an accident, he would call and it would take them a while... maybe not forever for most people, but he doesnt want to lay in his "stuff" and because i was there, i could see thru the window that there were nurses sitting there... its hard to be here and see that but its also annoying to think how it would be if i werent there...
plus everytime they cleaned him or helped him reposition, they often forgot to give him his call bell so i would get woken up by him talking to himself and i would get up to get his call bell.. i dont care... but what if i wasnt there?
One time, i woke up cus he thru a bottle of water at the door... he didnt have his call bell... How did the nurses not hear it? then he called when i gave him the bell and he said his machines were beeping (when he really needed to be cleaned) i guess he was a lil out of it... but i watched the nurse come to the door to hear that there was no beeping and she walked away
CAN YOU PLEASE COME IN AND CHECK ON HIM???? THEY KNOW HE IS OUT OF IT....
So i get up, again, and tell them... and they looked sympathetically at me.... so they came back in and helped him
Oh, and everytime they came in, they turned the bright lights on... there are dimmer lights..
Chris kept complaining about it to me... i dont know if i can request they not do that? but what if the nurse has bad eyes? i dont know
anyways, its not wednesday.. i have to go to rutgers for the job fair.. and Chris is with Jen and Karen the trainee today (she is an experienced nurse, just not on this floor)
I am praying Chris's diarrhea gets better...
Oh, duh... yesterday he got a good workout,,, and got in the chair... and he was in great spirits last night.. wanted hugs.. talkin.. so it was nice.. he said he saw sharon and it helped...
Now, its wednesday, like i said.. karen and jen are with him today and its good cus karen is a trainee so she is extra hands...
Talk to you all later
prayers please
xoxo jenn
Monday I went to work and went to visit over my lunch break... Anne, the Nurse Practictioner who is only assigned to transplant patients, tells me he had a meltdown shortly after I left last night... I do not think it was related to me leaving... he was just tired of not being able to move.. tired of being super uncomfortable in the bed.. and wants to go home.. apparently he was telling Sophie he was going to sign himself out... Sounds like he was borderline nasty.. not sure exactly what that means... And he loves Sophie... So I know that its not Chris... well.. its not the normal Chris.. Anne also mentions that they are going to put him on an anti-depressant to help him and that Dr Strair saw him in the morning and wants to talk to me and him about where we are in this process... Anne also mentioned that they talked to him about rehab for his physical therapy as an in-between when he leaves here... and she noted that Chris seems against it... so we talk a bit and then I went into Chris's room
Nancy is his nurse! woohoo.... she said he had been pretty good for her.. she is training a new nurse, Karen... Anyways, Chris is out of it and Nancy tells me that Dr Strair put him back on Dilaudid!!! Because Chris said the morphine wasnt working for his knees....
ooooh boy... Nancy is also not happy about this...
I went back outside and talked to Anne... she wasnt aware that the dilaudid made him hallucinate and all that.. She said she thought it was the Ativan.... It kills me that there arent some major bullet points on the front of his chart... a ton of nurses know about his dilaudid reactions.. the fact that he talks nonsense and gets knocked out way to much and just does really bad things not even realizing it when he has dilaudid.. Liz the nurse was near her and I was like "hey, ask her.. she has seen is first hand...." anyways... I explained to her that I really felt like he was asking for pain meds when he wanted to sleep.. .not so much for the knee pain he says he is having...
Anne switched it back over to morphine... I mentioned Sharon and Anne said she had been there earlier but Chris was sleeping. Anne asked me if I could come at 730am to see Dr Strair the next morning... she went on to say "well you tell us a good time.." I thought, hmmm.. yea,,, I know Dr Strair has clinic appointments all day across the street... let me suggest noon or 6pm...lol... So of course, I agreed to being here at 730am... Getting up at 545am is fun when I am already not getting a lot of sleep.. what the hell right? lol.. sorry venting...
I talked to Chris while I was there for lunch... he talked a bit... Nancy pointed out that she felt the anti depressant was a great idea... She said he needs it.. seems he lost some of his fight.. I agree... this is not the same old chris these days... Cant blame him.. you trying being stuck in a room for a couple months, stuck in bed for that matter... and going to the bathroom in a bedpan... you'd lose your mind probably... anyways, he explained to me that he is depressed cus he is stuck in there and cannot get comfortable and that he wants to go home... so i sympathized and he was actually his old self when i had to go back to work... told me to "get out of here so you dont get in trouble at work" and gave me a kiss
Anyways, I grabbed Bengay for his knees at home after work and went to see him for the rest of the night. My brother also came for a couple hours after work.. bought him a new Spuds dog... or snoopy... a stuffed dog.. ;) He is still kinda down. Sharon had come to see him and talked a bit but he was groggy
Tuesday morning comes. I get to the hospital just in the knick of time... damn 27 in Highland Park was slow as shit... and then the hospital deck was full... what??? i drove around behind slow ass cars and finally got a spot... then i get upstairs to his room and he was just telling the nurses to call me cus i might be late or forgot.. ugh.. i was 5 minutes late... and i gave myself more time than i needed... and my own fiance is doubting my ability to get there :(
Dr Strair comes in and basically tells us that his graft vs host is steroid resistant... It hasnt slowed down... Now, Aunt Ro had mentioned to me that Strair said on December 22nd, that it would be considered that in 3 days if the diarreaha didnt resolve... but now its 10 days later or so... and because it seemed to be a little better or at-bay when the lungs were getting better, i assumed things were slowly getting better... i guess not... and its affecting his skin (another common GVHD area) his face is sometimes reddish.. neck is a little discolored.. :( i wondered why some patients walking the hall had that coloring.. now i understand..
Strair basically said that this is "difficult". He told Chris that they will be giving another dose of Remicade (spelling?) on Friday. he got it once this past Friday.. a pretty harsh drug... and its only once a week. Anne did mention Monday that it often times takes 2-3 doses... Strair told Chris that they all empathize and that no one knows exactly what they are bargaining for... and that some people lose their will to live.... Chris said he has not.. he said he wants to fight..
Strair told him he has to get moving to get his strength back.. He said that this GVHD is rough and that it has him bed-bound and that he has to try to get out... and that it might help
(sidenote: this frustrates me to no end because he was in a chair on Thursday.. took a few steps... or was that Wednesday? all i know is Physical therapy didnt come on the holiday thursday.. i think they came friday and just did leg exercises... and they didnt come this weekend... i am sorry, but someone should be able to somewhat force him to move around.... his stubborness is from the drugs and his illness.. not because he doesnt want to get better.. and I tried.. i asked about PT on the weekend cus they were here on saturday for other patients.. but i got nowhere)
So, Strair went on to say that this is as difficult as before the transplant.. I assume he means to treat... and to deal with... I am not sure what the chances are that his GVHD wont get better or what else could happen (get worse) and I really dont want to know details of that right now cus this is hard to handle...
Strair mentioned that if it doesnt get better in the next 24-48 hours that they will add another drug to try to resolve it.. but that every med in this situation has its own side effects :(
He said these drugs can be like chemo (making you tired and want to sleep, etc)
Chris was not expecting this.. BUT i think what Strair said helped.... he seemed a lil more motivated to fight and when i had to go to work, he was sweet and i left...
I went home after work cus there was a chance of bad icey whether and i didnt want to face icey roads at 10pm or later when it would be time to go home. And i Have to be at rutgers wednesday (today) so i slept at hospital
Anyways, last night, Tuesday, Jen was his nurse... they were short staffed (down by 1 nurse, which is a pretty big deal in this unit)
Chris's diarreaha was a lil worse this night... and he was getting really frustrated because when he would wake up and realize he had an accident, he would call and it would take them a while... maybe not forever for most people, but he doesnt want to lay in his "stuff" and because i was there, i could see thru the window that there were nurses sitting there... its hard to be here and see that but its also annoying to think how it would be if i werent there...
plus everytime they cleaned him or helped him reposition, they often forgot to give him his call bell so i would get woken up by him talking to himself and i would get up to get his call bell.. i dont care... but what if i wasnt there?
One time, i woke up cus he thru a bottle of water at the door... he didnt have his call bell... How did the nurses not hear it? then he called when i gave him the bell and he said his machines were beeping (when he really needed to be cleaned) i guess he was a lil out of it... but i watched the nurse come to the door to hear that there was no beeping and she walked away
CAN YOU PLEASE COME IN AND CHECK ON HIM???? THEY KNOW HE IS OUT OF IT....
So i get up, again, and tell them... and they looked sympathetically at me.... so they came back in and helped him
Oh, and everytime they came in, they turned the bright lights on... there are dimmer lights..
Chris kept complaining about it to me... i dont know if i can request they not do that? but what if the nurse has bad eyes? i dont know
anyways, its not wednesday.. i have to go to rutgers for the job fair.. and Chris is with Jen and Karen the trainee today (she is an experienced nurse, just not on this floor)
I am praying Chris's diarrhea gets better...
Oh, duh... yesterday he got a good workout,,, and got in the chair... and he was in great spirits last night.. wanted hugs.. talkin.. so it was nice.. he said he saw sharon and it helped...
Now, its wednesday, like i said.. karen and jen are with him today and its good cus karen is a trainee so she is extra hands...
Talk to you all later
prayers please
xoxo jenn
Sunday, January 4, 2009
A Week of Updates- Happy New Year
I guess in being off from work for a week, I somehow managed to take a week off from blogging...
ooops
Sunday, December 28: Chris was feeling better. His dad and brothers Tommy, Danny, and Brian came. Chris hadnt seen Brian in over 10 years- Brian was only 6 yrs old or so back then... Brian was only a baby when Chris's mom left her family. This was the first time I met Brian...
Chris has been pretty sleepy and quiet.. but he was really excited to see his dad and brothers again. they brought a clifton newspaper, more pictures, cheesecake, etc... They really cheered him up even though he might look a little non-responsive... His dad was funny, asking how the bone marrow tasted... and other funny things that made Chris crack a smile...
I went home to have dinner with some relatives and whatnot..
My depression moment of the day was watching my Cowboys lose to the Eagles -- of all teams.. the Eagles... AND because Tampa Bay lost, the Eagles got the wild card spot... ugh... sadness in the land of Jennifer...
Later on Sunday, Jeanie came to visit Chris and me... we chatted with Chris.. watched Chris rest... and eventually we left.. she drove me home so that I could leave my car at the hospital..
Monday my dad drove me back to the hospital.. I got a bunch of cleaning done at home during the week... Being that I havent been home much in 2 months, the laundry doesnt get put away.. luckily my mom washes out clothes but i have to sanitize the house before Chris gets home.. which is in the near future depending on the diareaha and walking status...
I wish cleaning services (maids) were cheaper because with Chris's immune system being suppressed, i am supposed to shampoo all carpets and rugs before he gets home and keep the bathroom and bedroom super clean and cloroxed... When we took the bone marrow class a couple months ago, i left the room very overwhelmed because of all the things they tell us to do and clean.. my parents' house is clean.. but with 5 adults in the house and all of us working, the thought of vacuuming everyday, bleeching the inside of the fridge every week, etc etc...and all that is just a lot... they suggest changing the sheets on the bed multiple times a week.. not letting Rex sleep in his bed... they even suggested de-clawing Rex but we are not doing that... (Chris didnt do it when he was a kitten and its a pretty cruel thing to do to him now that he isnt a baby especially) so we have to get his nails clipped atleast every 4 weeks... chris is discouraged from eating in restaurants for a few months atleast and therefore will be eating at home everyday.. which is fine but if mom isnt making something chris feels like eating, i will have to start cooking again too...i love to cook and i do.. but its just another adjustment post-transplant...
ok, back to the week...
basically over the last week (Monday through Friday) Chris has been doing good overall
He is breathing on his own and everyday the pulse oxygen number went up a bit. By this weekend, it was up to 99%.. which is great... I keep telling him to use his incentive spirometer because he should still exercise his lungs.. lately, he has actually been listening to me and using it..
they have added opium and anti-diareaha meds to his orders... all week he was having about 2 bowel movements a day. By Thursday, it seemed that it started to get a lil consistancy.. but by this weekend, he started going 3 times a day. i think today he actually had 4 (but the last one was very small) As of last evening he stopped eating. The doctor changed him over to NPO today (nothing by mouth) because they feel that maybe he should rest his stomach so that the meds can work without the stomach also trying to deal with food... so hopefully that works
in his words, he is "tired of crapping"
He is on 100mg of steroids a day to control the graft vs host. And, the steroids make his sugar go up, so we have the insulin for coverage too...
Physical Therapy came on Monday Tuesday and Wednesday. They didnt feel he was ready for walking yet, but did lots of exercises in bed and then in the chair..
Of course on Thursday physical therapy was off for the holiday but the good news was that we got Dr Strair back. He is on for the month of January.
We were lucky to have Dr Biren S (cant spell the last name) for December but Dr Strair has known him since Day 1 and just love him more than anyone else...
Ok, lets back up a bit...
Dr Park, the eye doctor had been checking on Chris here and there.. told him to see him when he gets discharged for a follow-up-- kept telling Chris that the blood clot in his eye is the same and wont get better until his treatment for the leukemia (the transplant) really finishes doing its thing...
Well, Chris wasnt that comfortable with all of that, so the normal eye doctor for the unit had been on vacation and came back this week.. Dr Anderson who practices in North Brunswick.. she looked like she came straight from the gym.. but we liked her a lot... Chris loved her actually
She explained things a lot better to Chris... basically when the counts are all messed up (low) during chemo and bone marrow transplant etc... bleeding can happen anywhere...just like there was a tiny bit of bleeding in his head a couple months ago (when they did a scan cus of his siezures) anyways... there was some bleeding in his eyes and it takes a while for it to disolve... in the eye, there is a gel and the clot is sitting in it.. unfortunately right in his line of vision...
Doctor said that he should stay inclined or upright because gravity will help the clot fall below his line of vision... otherwise she said regardless it will take 4-6 weeks to disolve.. and thats its pretty common in patients like him.. so we will be seeing her for a follow up..
I think she might even he in Dr Partridge's office complex (the plastic surgeon who did his finger tumor and leg biopsy).. Oh Dr Anderson also mentioned that she and Strair go way back.. apparently Strair's daughter had a crush on her son back in kindergarten or something.. hehehe.. she mentioned Dr Strair's wife is also a doctor. I knew Dr Strair had a daughter but i never was sure if he was married... atleast she understands why he isnt home a lot since she is also a doctor.. but yea... thats that...
Also, on New Years Eve (Wednesday) I went to see Chris and brought wine glasses. He promised me that he would be awake for the ball drop
Side Note: Chris has been very sleepy ... mostly understandable for anyone who goes thru chemo and transplant.. I read that most transplant patients dont get there energy levels back to normal for 6-12 months after the transplant . or more...
Plus the diareaha and lack of moving around and drugs.. he is naturally going to be sleepy
However, they are allowing him morphine for the pain in his knees...
His knees have been hurting him for a week now... Dr Strair examined him well and I wasnt there for that, but Chris told me Dr Strair feels that its not graft vs host or anything.. I naturally get nervous because of where his leukemia was originally.. but there arent bumps or anything.. AND he has pre-existing knee issues.. had surgery on one knee years ago.. he has those kind of joints that bother him with the change of whether... so I guess between the lack of movement and the pre-existing thing, they are bothering him.. but it stinks cus otherwise he wouldnt need pain meds... luckily its not dilaudid anymore... but the morphine makes him even more sleepy.. and that doesnt allow for him to move around.. its a tough balance...
I hear other patients (from hearing nurses talk and whatnot) getting pain meds (for various things i guess) but i know Chris is also pretty anxious.. possibly a little depressed...
I cannot imagine how he feels.. he has been in the hospital for a very long time... since October 20-ish, he has been here except for about 10 days in between). I cannot imagine being in a room (not hooked to IVs) for 1 day.. so 60 days+ plus has to suck... i dont blame him.. but he has been such a fighter and i notice he is having trouble staying awake or himself lately...
He says he wants to go home.. and I keep telling him that he cant until he is walking (which is true) but they say when his diareaha is better and he is ready to be discharged, they will send him to rehab if he isnt walking well enough... he says he wont go.. oh boy! So, I am hoping that he gets more motivated
As of today (Sunday) he knows Physical Therapy will be back for the whole full week and he says tomorrow is D DAY.. he swears he is going to work on this now.. so I am hoping... I dont want to even think about him coming home and not being able to get up the stairs again.. ahh
So, its 10:20pm and Chris hasnt gone to the bathroom (#2) in 7 hours... I am hoping and praying (as I am sure, so is he) that its gonna slow down now...
They also were telling him to drink prior to today so he doesnt get dehydrated but now that are telling him nothing by mouth except with drugs and maybe ice chips.. so thats another battle when he is better.. to make sure he drinks enough.. I read that dehydration is common for these patients and could be bad, obviously... so hopefully his stubbornness goes away when he is feeling better
Anyways, back to THursday, Dr Strair came in to do rounds in the morning.. we hadnt seem him in a while (since the day Chris was going to ICU and was acting really silly)... So Dr Strair walks in and says "So I hear you are on the up-swing" Wow, isnt that nice to hear from him.... Even though he doesnt do rounds every day like the other docs on duty, doesnt mean he doesnt hear about Chris every day. Strair is very active in his care and medicine decisions.. so he has heard about all of his progress, and issues and whatnot...
Anyways, Dr Strair turned around to look at me when he asked me if I had any questions and i noticed him looking at my shirt... When he was done answering my question, he asked me if I went to Loyola University Chicago (I was wearing that shirt) and I said Yes. He replied that his wife did her undergraduate there - and he asked if I was from there. He went on to say that i got a tough good Jesuit education. What a small world.. There are alumni all over the world but not a ton in NJ... Being that I am a loyal Loyola alum and a lover of Jesuit education, I am excited.. lol.. anyways.. enough about that...
Lets see.. my parents came to hang out with us for a few hours on New Years Eve... Chris had some rice pudding.. was eating a bit during the week.. and keeping it down.. but was battling some nausia... i guess he wont be eating again for a lil while but thats ok if it helps settle the GVHD in the belly
I slept at the hospital on New Years Eve and I also slept here on Friday night --
Dr Strair was off for the weekend and Dr Gharebo (totally spelling that wrong) - He had her in August. She is nice... and covered this weekend
Back to Strair tomorrow
I also learned more about the young 20 year old guy on the floor. He got discharged today. His mom ran into me in the lounge and she told me that he was next door at the Childrens Hospital prior to coming here (which i knew) She seemed to know that Chris and I were married (well, close- lol) but she sees me everyday.. so its a no brainer i guess... She said that he was in the hospital for about a year... 8 months of chemo treatments I guess.. I mentioned Chris was in ICU for a while and then dealing with GVHD now. she told me he had that too.. and that his diareaha was still hanging around, or it was soft i should say... but its nice to see people are dealing with the same as Chris (nice,as in normal, nice not as in pleasant)..
But the stunning part was that she told me he was home only about 2 months.. he relapsed and came back... they were able to do the transplant (I didnt find out why it was not done before.. maybe it was gonna be avoided if chemo worked.. or donor wasnt found.. dont know) but she said he was in ICU 6 or 7 times (I guess over at childrens hospital) and she said that because he was now 20 that he was able to have transplant here.. otherwise as a pediatric, you have to go to phily because they dont do pediatric transplants here... so that was a relief for them.. they live in freehold.. anyways, he had MENINGITIS at one point and almost died... can you imagine? thats quite an ICU complication.. thats why i hated when they sent Chris down there.. luckily all he ever caught was VRE... anyways.. i am sure i will be running into them across the street for follow-ups
We had Liz as a nurse a few days this week.. Valsa once... Tatiana yesterday and today.. Liz is my buddy cus she doesnt want to give him morphine.. she was the nurse who sat with him for a bit on the day he pulled out his triple lumen port. She saw him at his worst...
Valsa loves Chris so much "that she will do anything for him" lol.. love that.. but Chris doesnt know when he asked for his 6 mg of morphine she only gave him 4.... but he didnt know and it worked.... Tatiana is from Russia.. she is so sweet and takes good care of him...
I would LOVE to know why Chris hasnt had Nancy though... she was here a few times during the week and didnt get Chris... Luckily, Chris hasnt gotten the nurse he doesnt like... and hopefully will be home soon... But I almost feel like Chris isnt getting Nancy cus i asked for her... i dont know ... luckily except for not getting her, he has lucked out...
At night, Chris had Sophie and Nina this week... love them both...
Caroll asked about Chris today.. loved the Christmas card... she had a Danish Christmas (they put real candles on their real Christmas tree) its their tradition.. whole family comes.. do it every year.. firefighters' nightmare.. but she is nice..
Tanya has been off for a week! but i think she comes back tomorrow... even though Chris doesnt get her at all lately, i have someone to chat with when its a quiet night and I am here... I feel like a crazy woman... Chris is right outside the nurses station and i can see the board where they put nurse assignments so I watch as they assign and cheer (quietly) for certain nurses.. i know.. its sick.. but chris sleeps a lot.. i have nothing else to do!!
All the nurses have their tactics... Nina just comes over and inclines him and tells him to take his pills... it works.. he likes her too.. but other nurses just leave the pills and he wont take him unless you catch him when he is awake...
Sophie is a sweetie and like a mom.. so her motherly ways work with Chris too... just when you think he is sleeping he is listening and tells me about stuff...
Tomorrow Tatiana is not working so I wonder who he will have..lol... I probably wont get here by 7am tomorrow so i wont get to watch the board in the morning.. haha
Yesterday, Saturday, Jeanie and Liv came over to exchange Christmas gifts.. That was fun. hadnt seen Liv in a while... she melts my heart and wanted me to find Rex (cus he was hiding a lot when they were over)
For all of you who have called Chris in the last 2 weeks.. please do not feel offended that he hasnt picked up or called back.. he doesnt call me either...
I was shocked when I got a call a couple days ago when i was home.. and my cell died over night last night (which happens once every 6 months to me!) So, of course he called me at 5am and 7am and my phone was off.. awww... but its ok.. i reached him finally around noon before i went back to the hospital.. it took many calls for him to answer...
I know a lot of you have noticed his mailbox is full.. so tomorrow i am going to attempt to get him awake enough to dial in and listen to messages...
Some of you contacted me via cell, text, email, etc to ask whats been going on... so i know it was time to update the blog too... Ronnie, Aunt Ro, Gina, Ann Marie, etc etc i owe a lot of people calls and emails..
for those of you who read... Christine Rabbath brought me a great novel for Christmas and i stopped reading my Jane Green novel to start it.. i am addicted and halfway through in just 2 days... Its called LOST AND FOUND by Carolyn Parkhurst.. i totally recommend and thank christine for that one!
Sad the Eagles won today.. boo... Sad I go back to work tomorrow... but its ok.. once Chris is home i will have 7 or so 2008 vacation days to use in January that my boss was kind enough to let me carry over so I can take care of Chris and take him to appointments and stuff...
Chris's blood counts all look good.. where they are supposed to be... His blood pressure has been good.. sometimes low but ok.. low from morphine and lack of activity...
Chris perked up a little while ago when the new Dancing Show on NBC started... he heard it was coming up after the football game and actually knew of it and wanted to watch... so he stayed awake for over an hour.. he is sleeping now. Sophie gave him morphine but said he hadnt gotten it since 3pm... he is allowed to have it every 2 hours.. ugh.. so its good that he went 7 hours...
Chris told me the other day when I suggested he call his brother Lew back "I dont like the phone.. thats your job right now..." so i gave up.. i had been asking him to try to call me during the day atleast once when he is awake just to tell me he is ok... but thats the response i got...
So, Lew... I will call you soon.. or you can call me... but apparently he doesnt want to talk on the phone.. i know he mentioned that his arm hurts from holding it.. plus he cant see too clearly cus of his eye blood clot so its hard for him to see the right numbers and contacts to dial... i dont blame him... but hopefully when he gets more active with physical therapy this week, i hope he gets more motivated and happy
He also told me this week that he doesnt feel like himself... i can imagine why he feels that way.. but it seems to be bothering him.. i try to cheer him up and it works sometimes but i think he has fallen into a slump.. he is so ready to go home and done being in here... misses his bed and Rex and home and normalcy... i know it doesnt seem like he enjoys company now because he is so sleepy but i know when he feels better its going to help him recover... so i am hoping he gets moving soon
I am leaving the hospital soon.. he is sleeping anyways.. and i need to rest for work tomorrow.. plus i want to read a bit before bed...
I want to try to get here in the morning before work.. but regardless i will spend my lunch break here tomorrow.. i have to find time during the week to organize his mail and bills and also clean my bedroom floor and clean various parts of the house.. i feel like i just did it.. but it was last week and i need to be semi ready for his homecoming so that its not a total cleaning frenzy when they do discharge him
Oh, earlier this week, we got a package from Aunt Ro's coworkers.. they sent us Orieles tee shirts, Ravens hats, MLB and Army throws and Redskins and Ravens towels and a nice card... how sweet.. a care package... So, I am sorta rooting for the Ravens now..lol.. happy they beat the dolphins... i dont like the Steelers ... as for NFC, i am gonna root for the Giants.. i know.. i am cowboys fan.. but i like the giants.. so i will suck it up for a 2nd year... cardinals i suppose would be my backup nfc team.. i cant watch the superbowl and not have a team to root for... so we will see...
i think thats all i have to say right now...
this blog was supposed to be for me and Chris to write the events and stories.. but since I didnt start it til October .. Chris hasnt had any energy to write and likes that i am doing it.. but i am hoping he writes when he is better, about his recovery... nonetheless.. i cannot believe how much blogging has accumulated already... I suppose this will be a nice diary for us to look back at .. maybe i really should start writing a novel like i always said i wanted to... stay tuned for that one..
love ya all... xoxox
Jenn
ooops
Sunday, December 28: Chris was feeling better. His dad and brothers Tommy, Danny, and Brian came. Chris hadnt seen Brian in over 10 years- Brian was only 6 yrs old or so back then... Brian was only a baby when Chris's mom left her family. This was the first time I met Brian...
Chris has been pretty sleepy and quiet.. but he was really excited to see his dad and brothers again. they brought a clifton newspaper, more pictures, cheesecake, etc... They really cheered him up even though he might look a little non-responsive... His dad was funny, asking how the bone marrow tasted... and other funny things that made Chris crack a smile...
I went home to have dinner with some relatives and whatnot..
My depression moment of the day was watching my Cowboys lose to the Eagles -- of all teams.. the Eagles... AND because Tampa Bay lost, the Eagles got the wild card spot... ugh... sadness in the land of Jennifer...
Later on Sunday, Jeanie came to visit Chris and me... we chatted with Chris.. watched Chris rest... and eventually we left.. she drove me home so that I could leave my car at the hospital..
Monday my dad drove me back to the hospital.. I got a bunch of cleaning done at home during the week... Being that I havent been home much in 2 months, the laundry doesnt get put away.. luckily my mom washes out clothes but i have to sanitize the house before Chris gets home.. which is in the near future depending on the diareaha and walking status...
I wish cleaning services (maids) were cheaper because with Chris's immune system being suppressed, i am supposed to shampoo all carpets and rugs before he gets home and keep the bathroom and bedroom super clean and cloroxed... When we took the bone marrow class a couple months ago, i left the room very overwhelmed because of all the things they tell us to do and clean.. my parents' house is clean.. but with 5 adults in the house and all of us working, the thought of vacuuming everyday, bleeching the inside of the fridge every week, etc etc...and all that is just a lot... they suggest changing the sheets on the bed multiple times a week.. not letting Rex sleep in his bed... they even suggested de-clawing Rex but we are not doing that... (Chris didnt do it when he was a kitten and its a pretty cruel thing to do to him now that he isnt a baby especially) so we have to get his nails clipped atleast every 4 weeks... chris is discouraged from eating in restaurants for a few months atleast and therefore will be eating at home everyday.. which is fine but if mom isnt making something chris feels like eating, i will have to start cooking again too...i love to cook and i do.. but its just another adjustment post-transplant...
ok, back to the week...
basically over the last week (Monday through Friday) Chris has been doing good overall
He is breathing on his own and everyday the pulse oxygen number went up a bit. By this weekend, it was up to 99%.. which is great... I keep telling him to use his incentive spirometer because he should still exercise his lungs.. lately, he has actually been listening to me and using it..
they have added opium and anti-diareaha meds to his orders... all week he was having about 2 bowel movements a day. By Thursday, it seemed that it started to get a lil consistancy.. but by this weekend, he started going 3 times a day. i think today he actually had 4 (but the last one was very small) As of last evening he stopped eating. The doctor changed him over to NPO today (nothing by mouth) because they feel that maybe he should rest his stomach so that the meds can work without the stomach also trying to deal with food... so hopefully that works
in his words, he is "tired of crapping"
He is on 100mg of steroids a day to control the graft vs host. And, the steroids make his sugar go up, so we have the insulin for coverage too...
Physical Therapy came on Monday Tuesday and Wednesday. They didnt feel he was ready for walking yet, but did lots of exercises in bed and then in the chair..
Of course on Thursday physical therapy was off for the holiday but the good news was that we got Dr Strair back. He is on for the month of January.
We were lucky to have Dr Biren S (cant spell the last name) for December but Dr Strair has known him since Day 1 and just love him more than anyone else...
Ok, lets back up a bit...
Dr Park, the eye doctor had been checking on Chris here and there.. told him to see him when he gets discharged for a follow-up-- kept telling Chris that the blood clot in his eye is the same and wont get better until his treatment for the leukemia (the transplant) really finishes doing its thing...
Well, Chris wasnt that comfortable with all of that, so the normal eye doctor for the unit had been on vacation and came back this week.. Dr Anderson who practices in North Brunswick.. she looked like she came straight from the gym.. but we liked her a lot... Chris loved her actually
She explained things a lot better to Chris... basically when the counts are all messed up (low) during chemo and bone marrow transplant etc... bleeding can happen anywhere...just like there was a tiny bit of bleeding in his head a couple months ago (when they did a scan cus of his siezures) anyways... there was some bleeding in his eyes and it takes a while for it to disolve... in the eye, there is a gel and the clot is sitting in it.. unfortunately right in his line of vision...
Doctor said that he should stay inclined or upright because gravity will help the clot fall below his line of vision... otherwise she said regardless it will take 4-6 weeks to disolve.. and thats its pretty common in patients like him.. so we will be seeing her for a follow up..
I think she might even he in Dr Partridge's office complex (the plastic surgeon who did his finger tumor and leg biopsy).. Oh Dr Anderson also mentioned that she and Strair go way back.. apparently Strair's daughter had a crush on her son back in kindergarten or something.. hehehe.. she mentioned Dr Strair's wife is also a doctor. I knew Dr Strair had a daughter but i never was sure if he was married... atleast she understands why he isnt home a lot since she is also a doctor.. but yea... thats that...
Also, on New Years Eve (Wednesday) I went to see Chris and brought wine glasses. He promised me that he would be awake for the ball drop
Side Note: Chris has been very sleepy ... mostly understandable for anyone who goes thru chemo and transplant.. I read that most transplant patients dont get there energy levels back to normal for 6-12 months after the transplant . or more...
Plus the diareaha and lack of moving around and drugs.. he is naturally going to be sleepy
However, they are allowing him morphine for the pain in his knees...
His knees have been hurting him for a week now... Dr Strair examined him well and I wasnt there for that, but Chris told me Dr Strair feels that its not graft vs host or anything.. I naturally get nervous because of where his leukemia was originally.. but there arent bumps or anything.. AND he has pre-existing knee issues.. had surgery on one knee years ago.. he has those kind of joints that bother him with the change of whether... so I guess between the lack of movement and the pre-existing thing, they are bothering him.. but it stinks cus otherwise he wouldnt need pain meds... luckily its not dilaudid anymore... but the morphine makes him even more sleepy.. and that doesnt allow for him to move around.. its a tough balance...
I hear other patients (from hearing nurses talk and whatnot) getting pain meds (for various things i guess) but i know Chris is also pretty anxious.. possibly a little depressed...
I cannot imagine how he feels.. he has been in the hospital for a very long time... since October 20-ish, he has been here except for about 10 days in between). I cannot imagine being in a room (not hooked to IVs) for 1 day.. so 60 days+ plus has to suck... i dont blame him.. but he has been such a fighter and i notice he is having trouble staying awake or himself lately...
He says he wants to go home.. and I keep telling him that he cant until he is walking (which is true) but they say when his diareaha is better and he is ready to be discharged, they will send him to rehab if he isnt walking well enough... he says he wont go.. oh boy! So, I am hoping that he gets more motivated
As of today (Sunday) he knows Physical Therapy will be back for the whole full week and he says tomorrow is D DAY.. he swears he is going to work on this now.. so I am hoping... I dont want to even think about him coming home and not being able to get up the stairs again.. ahh
So, its 10:20pm and Chris hasnt gone to the bathroom (#2) in 7 hours... I am hoping and praying (as I am sure, so is he) that its gonna slow down now...
They also were telling him to drink prior to today so he doesnt get dehydrated but now that are telling him nothing by mouth except with drugs and maybe ice chips.. so thats another battle when he is better.. to make sure he drinks enough.. I read that dehydration is common for these patients and could be bad, obviously... so hopefully his stubbornness goes away when he is feeling better
Anyways, back to THursday, Dr Strair came in to do rounds in the morning.. we hadnt seem him in a while (since the day Chris was going to ICU and was acting really silly)... So Dr Strair walks in and says "So I hear you are on the up-swing" Wow, isnt that nice to hear from him.... Even though he doesnt do rounds every day like the other docs on duty, doesnt mean he doesnt hear about Chris every day. Strair is very active in his care and medicine decisions.. so he has heard about all of his progress, and issues and whatnot...
Anyways, Dr Strair turned around to look at me when he asked me if I had any questions and i noticed him looking at my shirt... When he was done answering my question, he asked me if I went to Loyola University Chicago (I was wearing that shirt) and I said Yes. He replied that his wife did her undergraduate there - and he asked if I was from there. He went on to say that i got a tough good Jesuit education. What a small world.. There are alumni all over the world but not a ton in NJ... Being that I am a loyal Loyola alum and a lover of Jesuit education, I am excited.. lol.. anyways.. enough about that...
Lets see.. my parents came to hang out with us for a few hours on New Years Eve... Chris had some rice pudding.. was eating a bit during the week.. and keeping it down.. but was battling some nausia... i guess he wont be eating again for a lil while but thats ok if it helps settle the GVHD in the belly
I slept at the hospital on New Years Eve and I also slept here on Friday night --
Dr Strair was off for the weekend and Dr Gharebo (totally spelling that wrong) - He had her in August. She is nice... and covered this weekend
Back to Strair tomorrow
I also learned more about the young 20 year old guy on the floor. He got discharged today. His mom ran into me in the lounge and she told me that he was next door at the Childrens Hospital prior to coming here (which i knew) She seemed to know that Chris and I were married (well, close- lol) but she sees me everyday.. so its a no brainer i guess... She said that he was in the hospital for about a year... 8 months of chemo treatments I guess.. I mentioned Chris was in ICU for a while and then dealing with GVHD now. she told me he had that too.. and that his diareaha was still hanging around, or it was soft i should say... but its nice to see people are dealing with the same as Chris (nice,as in normal, nice not as in pleasant)..
But the stunning part was that she told me he was home only about 2 months.. he relapsed and came back... they were able to do the transplant (I didnt find out why it was not done before.. maybe it was gonna be avoided if chemo worked.. or donor wasnt found.. dont know) but she said he was in ICU 6 or 7 times (I guess over at childrens hospital) and she said that because he was now 20 that he was able to have transplant here.. otherwise as a pediatric, you have to go to phily because they dont do pediatric transplants here... so that was a relief for them.. they live in freehold.. anyways, he had MENINGITIS at one point and almost died... can you imagine? thats quite an ICU complication.. thats why i hated when they sent Chris down there.. luckily all he ever caught was VRE... anyways.. i am sure i will be running into them across the street for follow-ups
We had Liz as a nurse a few days this week.. Valsa once... Tatiana yesterday and today.. Liz is my buddy cus she doesnt want to give him morphine.. she was the nurse who sat with him for a bit on the day he pulled out his triple lumen port. She saw him at his worst...
Valsa loves Chris so much "that she will do anything for him" lol.. love that.. but Chris doesnt know when he asked for his 6 mg of morphine she only gave him 4.... but he didnt know and it worked.... Tatiana is from Russia.. she is so sweet and takes good care of him...
I would LOVE to know why Chris hasnt had Nancy though... she was here a few times during the week and didnt get Chris... Luckily, Chris hasnt gotten the nurse he doesnt like... and hopefully will be home soon... But I almost feel like Chris isnt getting Nancy cus i asked for her... i dont know ... luckily except for not getting her, he has lucked out...
At night, Chris had Sophie and Nina this week... love them both...
Caroll asked about Chris today.. loved the Christmas card... she had a Danish Christmas (they put real candles on their real Christmas tree) its their tradition.. whole family comes.. do it every year.. firefighters' nightmare.. but she is nice..
Tanya has been off for a week! but i think she comes back tomorrow... even though Chris doesnt get her at all lately, i have someone to chat with when its a quiet night and I am here... I feel like a crazy woman... Chris is right outside the nurses station and i can see the board where they put nurse assignments so I watch as they assign and cheer (quietly) for certain nurses.. i know.. its sick.. but chris sleeps a lot.. i have nothing else to do!!
All the nurses have their tactics... Nina just comes over and inclines him and tells him to take his pills... it works.. he likes her too.. but other nurses just leave the pills and he wont take him unless you catch him when he is awake...
Sophie is a sweetie and like a mom.. so her motherly ways work with Chris too... just when you think he is sleeping he is listening and tells me about stuff...
Tomorrow Tatiana is not working so I wonder who he will have..lol... I probably wont get here by 7am tomorrow so i wont get to watch the board in the morning.. haha
Yesterday, Saturday, Jeanie and Liv came over to exchange Christmas gifts.. That was fun. hadnt seen Liv in a while... she melts my heart and wanted me to find Rex (cus he was hiding a lot when they were over)
For all of you who have called Chris in the last 2 weeks.. please do not feel offended that he hasnt picked up or called back.. he doesnt call me either...
I was shocked when I got a call a couple days ago when i was home.. and my cell died over night last night (which happens once every 6 months to me!) So, of course he called me at 5am and 7am and my phone was off.. awww... but its ok.. i reached him finally around noon before i went back to the hospital.. it took many calls for him to answer...
I know a lot of you have noticed his mailbox is full.. so tomorrow i am going to attempt to get him awake enough to dial in and listen to messages...
Some of you contacted me via cell, text, email, etc to ask whats been going on... so i know it was time to update the blog too... Ronnie, Aunt Ro, Gina, Ann Marie, etc etc i owe a lot of people calls and emails..
for those of you who read... Christine Rabbath brought me a great novel for Christmas and i stopped reading my Jane Green novel to start it.. i am addicted and halfway through in just 2 days... Its called LOST AND FOUND by Carolyn Parkhurst.. i totally recommend and thank christine for that one!
Sad the Eagles won today.. boo... Sad I go back to work tomorrow... but its ok.. once Chris is home i will have 7 or so 2008 vacation days to use in January that my boss was kind enough to let me carry over so I can take care of Chris and take him to appointments and stuff...
Chris's blood counts all look good.. where they are supposed to be... His blood pressure has been good.. sometimes low but ok.. low from morphine and lack of activity...
Chris perked up a little while ago when the new Dancing Show on NBC started... he heard it was coming up after the football game and actually knew of it and wanted to watch... so he stayed awake for over an hour.. he is sleeping now. Sophie gave him morphine but said he hadnt gotten it since 3pm... he is allowed to have it every 2 hours.. ugh.. so its good that he went 7 hours...
Chris told me the other day when I suggested he call his brother Lew back "I dont like the phone.. thats your job right now..." so i gave up.. i had been asking him to try to call me during the day atleast once when he is awake just to tell me he is ok... but thats the response i got...
So, Lew... I will call you soon.. or you can call me... but apparently he doesnt want to talk on the phone.. i know he mentioned that his arm hurts from holding it.. plus he cant see too clearly cus of his eye blood clot so its hard for him to see the right numbers and contacts to dial... i dont blame him... but hopefully when he gets more active with physical therapy this week, i hope he gets more motivated and happy
He also told me this week that he doesnt feel like himself... i can imagine why he feels that way.. but it seems to be bothering him.. i try to cheer him up and it works sometimes but i think he has fallen into a slump.. he is so ready to go home and done being in here... misses his bed and Rex and home and normalcy... i know it doesnt seem like he enjoys company now because he is so sleepy but i know when he feels better its going to help him recover... so i am hoping he gets moving soon
I am leaving the hospital soon.. he is sleeping anyways.. and i need to rest for work tomorrow.. plus i want to read a bit before bed...
I want to try to get here in the morning before work.. but regardless i will spend my lunch break here tomorrow.. i have to find time during the week to organize his mail and bills and also clean my bedroom floor and clean various parts of the house.. i feel like i just did it.. but it was last week and i need to be semi ready for his homecoming so that its not a total cleaning frenzy when they do discharge him
Oh, earlier this week, we got a package from Aunt Ro's coworkers.. they sent us Orieles tee shirts, Ravens hats, MLB and Army throws and Redskins and Ravens towels and a nice card... how sweet.. a care package... So, I am sorta rooting for the Ravens now..lol.. happy they beat the dolphins... i dont like the Steelers ... as for NFC, i am gonna root for the Giants.. i know.. i am cowboys fan.. but i like the giants.. so i will suck it up for a 2nd year... cardinals i suppose would be my backup nfc team.. i cant watch the superbowl and not have a team to root for... so we will see...
i think thats all i have to say right now...
this blog was supposed to be for me and Chris to write the events and stories.. but since I didnt start it til October .. Chris hasnt had any energy to write and likes that i am doing it.. but i am hoping he writes when he is better, about his recovery... nonetheless.. i cannot believe how much blogging has accumulated already... I suppose this will be a nice diary for us to look back at .. maybe i really should start writing a novel like i always said i wanted to... stay tuned for that one..
love ya all... xoxox
Jenn
Saturday, December 27, 2008
photos from the last few weeks (of Chris's room)
Aunt Ro sent the firetruck and singing reindeer (or moose)
bulletin board in his room
Aunt Ro sent the Angel Snowmen decoration and you can also see cards he received...
view outside his hospital window when it snowed
Chaplain Sharon ran the Philly marathon and had our names on the back of her bib.. Chris wanted a photo of her from the race.. and she surprised him with one framed that she wrote on for him...
Chris when he was in ICU with the oxygen
Aunt Ro sent the Angel Snowmen decoration and you can also see cards he received...
view outside his hospital window when it snowed
Chaplain Sharon ran the Philly marathon and had our names on the back of her bib.. Chris wanted a photo of her from the race.. and she surprised him with one framed that she wrote on for him... 
Chris when he was in ICU with the oxygen
Finkel Visit, Steroids Decreased, Oxygen Gone, Anxiety Arrives
Friday morning... Christmas is over :(
I slept like a rock... i woke up Friday and felt like I needed another 10 hours of sleep...
I went to get lunch with my dad-- then I was getting ready to leave and Chris called me!! I havent gotten a call from him in over a week.. he has been too out of it use his phone... He told me he ate breakfast (not just a boost) and he ordered lunch... however he told me he ordered chicken parm!! oooh boy
So I went to see Chris-- Vivian is his nurse... she took care of him back in June... and was super pregnant then... She had twins and is back now :) She is an awesome nurse... his lungs are getting better.. but they are distressed from all the fluid and inflamation he had for a week... slowly but surely they will heal... he really needs to use his spirometer that he hates... He wants to get out of bed but isnt allowed yet because of the weakness in his body... and breathing was so distressed... physical therapy needs to come and assess him before he is allowed to get into a chair.. annoying... he is tired of being on his butt.. and sitting up in a chair would be great for the lungs... He wants to sleep through his discomfort.. He is not happy that he cannot have dilaudid...
Vivian had talked to him about ambien for the night, to help sleep.. and I reminded him that he had Xanex on order... they gave it to him monday when he had a restless day before getting transferred to ICU
Anyways, his food comes.. he eats some chicken parm and Coke.. and he threw it up.. He realized it wasnt a good food choice.. his belly hasnt eaten in 3 weeks.. its not ready for sauce... so he ate pretzels and that was much better... Boost too
Doctors said he had ativan on order for sleep, as well as Benedryl and Xanex.. the anti-nausia meds also help with sleep
Christine Rabbath came to visit.. she brought cookies for Chris and Christmas gifts... Chris loved it... Devils shirt .. he was pretty sleepy but big grin appeared when he saw the Devils shirt.. and Starbucks ornament ;) I got a matching one from them... yay! After visiting with Chris, Mike picked Christine and I up... he was driving Ben around for a nap while Christine was up visiting Chris...
They took me out to dinner... Ben is so adorable... awwww
Sophie came on for the night shift... Love her too.. she is so sweet
She takes really great care of Chris....
Anyways, Chris just wanted to sleep.. got his Ativan... and I hung out for a bit... was gonna leave soon
Then, I went out in the hall and saw Dr Sadov... Chris loves him... he wanted to come in and see Chris.... so I talked to him about Chris's progress and he said Chris was doing much better than earlier in the week. He said he was scared on Monday ... but Chris was doing so much better now
We go into the room, and Chris was in serious pain.. he had an IV in his arm (in addition to the pic line) and it was super painful all of a sudden...
Dr Sadov talked to him.. Chris said he wanted to rip the arm off.... so Sophie came in and Dr Sadov went outside to order some pain meds...
In the meantime, Will came in to help Sophie (Will is a tech) and Dr Sadov walks in saying "I ordered some Dilaudid prn for him for the pain" sophie, will, and I all turned and looked at the doc like he was crazy... Poor Dr Sadov had no idea that dilaudid was taken off the orders because it made Chris hallucinate...
So then he understood while we all looked at him like that.
He remembered that morphine didnt work for Chris but that was when he had painful sore throat... so he ordered that
I went back in the room, Sophie had already taken the IV out and it was a little better
Then we gave him a hot compress... Chris fell asleep.. didnt even need pain meds
I said goodnight and went home
Saturday morning, I woke up and cleaned up a bit at home... eventually got myself together and went to see Chris..
I get there and Vivian tells me he is medically doing fine.. but emotionally rough day... he wants to go home :(
So I went in and Chris told me he wants to go home... I gave him a pep talk... yadi yadi.. reminded him of why he is there and that he is getting close to going home
He said his eye and not being able to see well is killing him.. I feel so bad for him
that must suck
He is saying he can get his meds home and recover there ;(
we talk and he is better... he was even throwing some things around today...
His oxygen is gone!! no more tube in his nose... he is breathing much better
He ate some food and stuff today
Diareaha is less today so far... steroids are still decreased...
Vivian is awesome.. she was encouraging him and I love her
he is in his beer hawaiian shirt that Dana and Chris Cullen gave him... he looks so much more like himself
He seems better
My parents came to visit... they are so happy to see how much better he looks
Then i went to dinner with them and they dropped me back off
I will be here for a while tonight.. but he is sleeping.. so thats good
Physical Therapy came today and they said they will work with him more on Monday...
I talked to a guy in the hallway.. his wife had a transplant and she went home on Day 10.... 12 Days later she was back in the hospital.. thats when her graft vs host came on.. and she has been here for 2 weeks
Chris is at Day 16... Tomorrow is Day 17... he engrafted fast.. and his GVHD came quick
Hopefully he continues to improve and gets his physical therapy going on Monday... he wants to get in a chair so bad.. and he wants his eyes to work :(
Tomorrow Chris's dad and brothers are coming down to visit... so that will be very nice... that makes Chris happy... and then Jeanie is coming at night to hang...
Thanks cousin Jen for the Christmas card...
talk to you all later
xoxox Jenn
I slept like a rock... i woke up Friday and felt like I needed another 10 hours of sleep...
I went to get lunch with my dad-- then I was getting ready to leave and Chris called me!! I havent gotten a call from him in over a week.. he has been too out of it use his phone... He told me he ate breakfast (not just a boost) and he ordered lunch... however he told me he ordered chicken parm!! oooh boy
So I went to see Chris-- Vivian is his nurse... she took care of him back in June... and was super pregnant then... She had twins and is back now :) She is an awesome nurse... his lungs are getting better.. but they are distressed from all the fluid and inflamation he had for a week... slowly but surely they will heal... he really needs to use his spirometer that he hates... He wants to get out of bed but isnt allowed yet because of the weakness in his body... and breathing was so distressed... physical therapy needs to come and assess him before he is allowed to get into a chair.. annoying... he is tired of being on his butt.. and sitting up in a chair would be great for the lungs... He wants to sleep through his discomfort.. He is not happy that he cannot have dilaudid...
Vivian had talked to him about ambien for the night, to help sleep.. and I reminded him that he had Xanex on order... they gave it to him monday when he had a restless day before getting transferred to ICU
Anyways, his food comes.. he eats some chicken parm and Coke.. and he threw it up.. He realized it wasnt a good food choice.. his belly hasnt eaten in 3 weeks.. its not ready for sauce... so he ate pretzels and that was much better... Boost too
Doctors said he had ativan on order for sleep, as well as Benedryl and Xanex.. the anti-nausia meds also help with sleep
Christine Rabbath came to visit.. she brought cookies for Chris and Christmas gifts... Chris loved it... Devils shirt .. he was pretty sleepy but big grin appeared when he saw the Devils shirt.. and Starbucks ornament ;) I got a matching one from them... yay! After visiting with Chris, Mike picked Christine and I up... he was driving Ben around for a nap while Christine was up visiting Chris...
They took me out to dinner... Ben is so adorable... awwww
Sophie came on for the night shift... Love her too.. she is so sweet
She takes really great care of Chris....
Anyways, Chris just wanted to sleep.. got his Ativan... and I hung out for a bit... was gonna leave soon
Then, I went out in the hall and saw Dr Sadov... Chris loves him... he wanted to come in and see Chris.... so I talked to him about Chris's progress and he said Chris was doing much better than earlier in the week. He said he was scared on Monday ... but Chris was doing so much better now
We go into the room, and Chris was in serious pain.. he had an IV in his arm (in addition to the pic line) and it was super painful all of a sudden...
Dr Sadov talked to him.. Chris said he wanted to rip the arm off.... so Sophie came in and Dr Sadov went outside to order some pain meds...
In the meantime, Will came in to help Sophie (Will is a tech) and Dr Sadov walks in saying "I ordered some Dilaudid prn for him for the pain" sophie, will, and I all turned and looked at the doc like he was crazy... Poor Dr Sadov had no idea that dilaudid was taken off the orders because it made Chris hallucinate...
So then he understood while we all looked at him like that.
He remembered that morphine didnt work for Chris but that was when he had painful sore throat... so he ordered that
I went back in the room, Sophie had already taken the IV out and it was a little better
Then we gave him a hot compress... Chris fell asleep.. didnt even need pain meds
I said goodnight and went home
Saturday morning, I woke up and cleaned up a bit at home... eventually got myself together and went to see Chris..
I get there and Vivian tells me he is medically doing fine.. but emotionally rough day... he wants to go home :(
So I went in and Chris told me he wants to go home... I gave him a pep talk... yadi yadi.. reminded him of why he is there and that he is getting close to going home
He said his eye and not being able to see well is killing him.. I feel so bad for him
that must suck
He is saying he can get his meds home and recover there ;(
we talk and he is better... he was even throwing some things around today...
His oxygen is gone!! no more tube in his nose... he is breathing much better
He ate some food and stuff today
Diareaha is less today so far... steroids are still decreased...
Vivian is awesome.. she was encouraging him and I love her
he is in his beer hawaiian shirt that Dana and Chris Cullen gave him... he looks so much more like himself
He seems better
My parents came to visit... they are so happy to see how much better he looks
Then i went to dinner with them and they dropped me back off
I will be here for a while tonight.. but he is sleeping.. so thats good
Physical Therapy came today and they said they will work with him more on Monday...
I talked to a guy in the hallway.. his wife had a transplant and she went home on Day 10.... 12 Days later she was back in the hospital.. thats when her graft vs host came on.. and she has been here for 2 weeks
Chris is at Day 16... Tomorrow is Day 17... he engrafted fast.. and his GVHD came quick
Hopefully he continues to improve and gets his physical therapy going on Monday... he wants to get in a chair so bad.. and he wants his eyes to work :(
Tomorrow Chris's dad and brothers are coming down to visit... so that will be very nice... that makes Chris happy... and then Jeanie is coming at night to hang...
Thanks cousin Jen for the Christmas card...
talk to you all later
xoxox Jenn
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