Know What I Mean, Jelly Bean?

“You can tell a lot about a fellow's character by the way he eats jelly beans.” ~Ronald Reagan

Wish I could say this picture was a reflection of what I was feeling, but, I cannot. There has been a lot going on with Nick and I haven't had the time nor the inclination to post much of anything. So I guess I will post an update on what has been happening here at the Hop. My biggest concern is that as the days tick off the calender, Nick is still not getting well. The new attending Dr. Hallelujah is very concerned as well.
The two biggest worries continue to be Nick's lungs and breathing status and his low counts.

Breathing and other essential bodily functions:
Nick seemed to be doing better with regard to his breathing, but, the two nights ago after I left Nick started wearing his NC and his FM together, which ultimately bumps up the amount of oxygen you are getting. His sats went up with this extra oxygen, but, no one noticed he was wearing both things. When I came in the next day at 3PM (I had stayed home to go to the studio and Glenn & Sara were here with Nick) I noticed this and I asked Nick why he was wearing both. He stated, "Well, I have to in order to keep my sats up." I then had Nick take off the cannula and just use the mask to see what his sats really were...the mask had to be turned up to 70% to get his sats in the low to mid 90's!! Now ever since April 3rd, I have been noting in my notes that Nick has not been feeling well and his sats have been trending lower each day.

On Wednesday night when I left, I was worried because all day Nick had been hanging around 90%, with dips down to 89%, and that was basically just sitting in bed! I was concerned what would happen overnight. Well, after I found that Nick had this increased O2 requirement, we called the RN and the doctor to the room, where they determined it was real and then they all began wondering what was going on..."Why did his sats suddenly drop?" I told them they did not suddenly drop, that apparently this had been going on since about 10PM the night before and no one noticed that Nick was on 6L NC and 40% FM at the same time. A CXR was done that actually looked good and then the pulmonary MD was consulted. It was decided that Nick should have a blood gas drawn. Long story short, Nick had methemaglobinemia. His levels were
elevated. When these levels are elevated it makes it hard for the hemaglobin molecule to carry oxygen to the tissues! Just what Nick needs right?

The guilty culprit is most likely a medicine called Dapsone. Nick was taken off Bactrim and put on Dapsone, because the doctors were trying to take off anything that could cause low counts. Nick has been on the Bactrim since right after his BMT so I doubt that this was the case, but, we figured might as well try it. So the Dapsone can cause the elevated methgb. Now fortunately his level was only up to 8% when it was discovered. (Normal is like 1-1.5%) I was concerned about this, but, at least it seemed to be a good explanation of Nick's increasing oxygen demand (although giving more O2 actually doesn't help in the case of methgb) but, alas, the doctors are worried there is something else still going on. It has been so long, that Nick's lungs should be recovering better from the pneumonia by now.

Therefore, more tests are planned for the near future, including ECHO cardiogram to check his heart, pulmonary function tests to check his lung capacity and compare to pre-BMT values, and finally, repeating the bronchoscopy to reculture and biopsy to r/o anything else that might be goin on. Nick has been back on the high flow face mask at FIO2 between 50-60% with sats in the middle 90's. His activity tolerance seems once again to be severely limited. His resp rate is up with any kind of activity and he sometime has expiratory grunting even at rest. His HR goes from his current baseline of low 100's (very high for an adult HR already, normal should be 60-70 bpm) to 130's within seconds of him standing up. His color is very pale and grey and he continues w/ dusky nail beds, especially in his feet, which are very cool and don't have the normal pink color. Should I be worried about any of this?? Nah...

Other issues include:

a) elevated liver enzymes with alk phos now up to 1120!! They think it might be GVH flaring up and therefore, Nick will start back on his Prograf tonight.

b) eating and nutrition - Nick remains on the IV food (called TPN & Lipids). His weight is still hovering around 130 lbs! At least he has not lost more weight over the past week. Nick's appetite has been in and out. Most days he is not that hungry and when he is the food here has been horrible. We continue to bring things from home, which is a challenge for sure due to all the food rules Nick must follow because of his low counts. The MD's finally requested that he be put on the "VIP" menu that costs extra and is designed for the people who can afford to pay for better meals. The good thing...Nick doesn't have to pay for them at all!! The bad thing is Nick has continued to have bouts of nausea and vomiting, despite medicating for this. Also, the food is actually somewhat rich and fancy for someone to start off eating, when your stomach has had noting in it for quite some time. The bottom line is Nick is not eating anywhere enough food to get off the IV food right now. The IV food can also be hard on the liver. At least this new menu offers more variety and slightly better food. It also allows Nick to choose the times he wants his meals to arrive.

c) Neck pain/Headache/Nausea/Vomiting - henceforth to be know at the Freakin' Foursome of Pain and Perturbia!! For more than a week now this irascible gang of symptoms have been wreaking havoc with Nick's waking hours. Every time Nick gets up to sit in a chair and eat, his neck begins to hurt and/or get stiff (muscular??), which leads to a headache, which leads to nausea, which leads to vomiting!! Several days ago, Nick started getting anti-nausea meds ATC and he has Ativan for breakthrough N&V. The problem with the Ativan is it puts him to sleep straight away. Usually, the headache gets so bad that he does not feel like eating anything and he just wants to get back in bed. Sometimes if he has eaten, it all comes up. The cause for all this is debatable right now. Nick was having the stiff neck and HA prior to even coming in the hospital, to the point, that Nick asked Dr. Frosty for some kind of pain meds at home. Nick started on Tramadol at home which did help. Since being in the hospital everything has gotten worse and nothing seems to help the pain. Nick was started on a muscle relaxant (Baclofen) and a different pain med like ibuprofen called, Trilisate, that seems to help a little. Nick is making a gallant effort every meal of every day to try to eat. Who knew eating could be so much work???

d) throat and swallowing pain - the swallowing pain is still there, but, maybe slightly improved. Nick came off the Fentanyl pain pump a few days ago as it was not really helping and it was definitely making him sleepy!

e) counts/soldiers - Nick's Army of infection fighting infantry dudes is sorely lacking! His WBC remains in the 900-1200 range (normal = 4500-11,000) ANC = 150-350 (normal = 1500-7800) Platlet count - continues to drop down requiring transfusions to maintain level. The platlet count dropping is from the effect of the radiation on the bone marrow, the WBC and ANC is less clear and Nick's counts have been down for a while now. They have stubbornly refused to rise up and fight! The doctors have removed every possible reason they can think of as to what could be suppressing these counts, so far without success. And so we wait, and wait, and wait some more. Where are the reinforcements??

Just came up with another theory...I wonder if Nick's deteriorating resp status has anything to do with having DC'd the Caspofungin. Nick got his last daily dose on 4/7 and Nick started with the extra oxygen on the night of 4/8!! Hmmm.....I put it out there for the nurse. Wish I had thought to ask about it earlier when Dr. Hoff was here. Nick also finally coughed up some good sputum from his lungs and it had a dark grey/green/black thingy within the sputum that actually looked like fungus. I know...TMI and EEEEEWWWWWW!!!!! Sorry, but I live and breathe this stuff. So why shouldn't you!