Forever and A Day

Sorry I can't put up a pretty picture, but, I am at the Hop and the site is blocked. Not to alarm anyone, but, Nick had to be admitted to hospital yesterday. He has not been feeling or looking well for quite some time now and I guess it all came to a head in the past couple of days. Once again, I hate to say it by my nurse radar was right again. I would love try to give you the reader's digest version...but, you know I am not good at that. So here goes...

Nick has had a cough and a cold for four weeks now. On December 17th, his chest CT scan was clear, despite a horrible cough and upper respiratory symptoms. Nick felt good on Christmas Eve, but, since then not so much. His symptoms include the cough, respiratory congestion, sort of bronchial wheezing, decreased appetite, decreased energy, HEADACHE (different from spinal headache, different from leukemia headache, different from sinus headache) but painful. In addition, Nick started throwing up again on Friday, 12/26 with decreased fluid intake, despite his protests to the contrary. He had lots of plans...but, mostly he just laid around the house and sleep.

I called the outpatient department on Friday and spoke with triage nurse...her advice was to watch and wait and encourage fluids. Of course, Nick did not want to come down to HOP so I agreed to this plan, as at this point he had only thrown up once. However, keep in mind, I still don't think he looks that great and I let you know when I think he does. When Nick was at clinic on 12/17, I did not think he looked good or felt good, however, Dr. F thought he was doing great and even suggested Nick could get his labs done at another lab and have the results faxed to him. I'm just thinking to myself...ok, well maybe that will work out. NOT!

The following week on Tuesday, 12/23 we went down to Hop clinic, had labs drawn. Nick was a little grouchy (he is tired of all this and I don't think he was feeling that well either) This was the night that I had planned to go to airport for Operation Welcome Home, so we drove home and we weren't in the door five minutes when his nurse called to say his magnesium was low and he needed to come back to get some in an IV. So Nick drove down there and spent another three and a half hours getting Mg.

Meanwhile, back to this week....Saturday, 12/27: Nick woke up not feeling well again, threw up three times in the morning. Called the pager service, luckily it was Dr. D (a really nice fellow that knows Nick pretty well) I spoke with her first,then Nick got on the phone with her. She decided that he needed to be admitted to at least get some labs drawn and IV fluids. So off we went down to Weinberg. Since then the following things have happened in no particular order:

1. Admission VS - Nick remains without fever which is good, but weird.
2. I had to get a wheelchair to ride him up to 5A as he was so wobbly and unsteady on his feet, which he even agreed too!
3. He was and remains very dehydrated! He got two liters of fluid last night and is on faster IV rate now and he has still on gone to BR to void two times since he was admitted!!!!
4. He continues to have intermittant emesis of unknown cause...they stopped his one anti-nause med (Zofran) due to the possibility that it could be causing his headaches. I do not subscribe to this theory at all as he has been on the Zofran forever without a problem . He is on IV Ativan now which seems to be helping a little.
5. Nick continues with headache, painful 7/10 pain score which is high for NIck. Why??? No one knows.
6. Sinus CT scan - results ??
7. Chest CT scan - shows he might have a "walking pneumonia." The doctor last night thought she heard wheezing, today's doctor says he is "clear" but, he still may have a "viral" pneumonia
8. They started him on antibiotic called a Z-pak. This is by mouth.
9. They will be having infectious disease team and pulmonary team consult on Nick's case.
10. He was also tested for other respiratory viruses. And therefore, we all must wear gowns, gloves and masks at all times in the room.
11. The whole place is on "germ lockdown" due to flu season, so all visitors had to wear masks in the patients rooms anyway. The gown and gloves are just a BONUS! As my New Jersey blog-o-sphere commenters would say..."Noice!"
12. Since Nick's line has been out for a while now...he has been getting stuck and had to have a regular IV started in his arm. He has been a trooper, but, that line sure does spoil us all.
13. Admitting doctor was concerned that vomiting might be related to gut GVHD coming back and wanted to start steroids back up. Nick came off the steroids on Friday, December 19th. Ever since then the picture has been confused, wondering if the steroids being off was what was effecting everything from soup to nuts regarding Nick's condition; for example, his counts, his appetite, his energy level, everything. I asked them not to start the steroids without consulting with GVH team first. So that put them on hold and now Dr. A agrees we don't need to start them now.
14. Nick has also had ringing in his right ear for almost a week. All of his symptoms could also be explained by "tacrolimus toxicity." The symptoms include: headache, nausea, vomiting, tinnitus, numbness or tingling of extremities. So of course I was concerned...they drew a level at the wrong time, so now it has to be repeated. Waiting for results....it has been in the normal range, however, the body can still have symptoms of toxicity even when the level is within normal range.
15. Nick has lost weight again. Ever since he has been of the steroids his appetite has diminished markedly. He did weigh 160 pounds on 12/10...it has been slowly creeping downward. Yesterday on admit, his weight was 151 pounds. Not sure what to make of this...but, it really drops off quick when he is not eating. I wish that would work for me.

I was hoping when I arrived today that Nick would have perked up and I would be taking him home. That is not the case and Dr. A wants him to stay at least overnight one more night.

Nick has his cell here in his room so you can reach him that way...or leave messages on his facebook account. I hope we wont' be here too much longer. But, it seems there is more going on than meets the eye and at least now we can figure it out and hopefully get it fixed. Nick wanted to be home in time to watch the Raven game...now that ain't gonna happen. He has been so wiped out I don't know if he will even have enough energy to enjoy it.

Needless to say, I am upset that Nick has to be back in the hospital. The thing is they really don't have any good way to treat patients like Nick when they do get sick, other than admitting them. The last thing they want you to do is hang around in a hospital ER or a Patient First with all the germy people. Beatle song (Elanor Rigby)....Oh, look at all the germy people.

Doctor from pulmonary just came in....says that Nick has a hugely socked in sinus infection, involving the maxillary sinuses and the ethmoid sinuses. Increased dose on Z-pak. Showed me CT scan of chest and sinuses. Nick has something in bases of both lungs, the question is what??

I need to stop now...updates later. Oh, guess who I discovered is on this floor with us...the H family! Got to talk to Mr. H's wife today for a good period. They are still have a rough go of it, please keep them and Nick in your prayers!! Also, BTW today marks seven months that Nick has been fighting this battle since he was diagnosed and yesterday was his four month mark since his BMT. It seems like forever.