Early in the evening Mike had a little more energy--enough so to do some dancing. We popped in the 'A Night at the Roxbury' movie soundtrack into our CD player, blasted the music through our speaker system and started dancing around our family room like a couple of dancing fools.
A Night at the Roxbury CD soundtrack: $15.99, KEF 5.1 speaker system: $2,000, Mike Wu dancing and shaking his bon-bon.....Priceless.
Greetings from the Cancer Center Library. Mike's upstairs in the Infusion Treatment Area (ITA) and getting his infusions of DHPG and magnesium. Mike's white blood cell count is within normal range, but his hematocrit, hemaglobin and platelet levels are lower than normal. The doctor says that it could be due to the DHPG medication.
This week has been a little off for Mike. He's not feeling as well as the previous week. He's had some recurring bouts of diarreah, increasing fatigue level, occasional coughing and low grade fevers. Today the doctor sent his blood samples to get cultured to see if there's any infection going on. We won't know the results of the blood culture for another couple of days.
Overall, things are moving forward. Some days are better than others. Mike and I are getting used to our daily routine to/from the Cancer Center (occasionally we get a day off if his counts look good).
I always say, "thank goodness we like eachother as much as we do!" It goes without saying that we love eachother, but we also truly like eachother--which is a good thing since we are in home isolation mode when we're not in the hospital--it's just him and me, in our little home (with no air conditioning). At first, I had a tough time transitioning away from working at my company (which I really enjoy) to being a full time caregiver at home. But, it's really a blessing to be able to spend all this time with Mike.
We mostly spend our time watching TV and Netflix movies. We also talk a lot. We have healthy debates over politics and the state of the world and, most recently, the Paul Hamm (olympic gymnast) controversy. We also talk about our childhoods--I so enjoy hearing about his childhood and upbringing. He often speaks fondly and lovingly about his grandmother who was such an instrumental part of his life.
In my opinion, he has had his share of challenges growing up in Taipei, moving away from his family to live in a small town in Texas at the age of 12 (not knowing any English), eventually making his way to Davis, CA at the age of 14..... Because of certain circumstances, he's had to grow up quickly at a very young age. One can look at these previous circumstances as setbacks or hinderances in life, but Mike never saw them that way. He's always had the "glass is half full" mentality. Everything that has happened in his past has molded him into the responsible, hard-working, dedicated, generous, loving, successful, humble, take-nothing-for-granted guy that he is today. He has a great perspective on life.
Does anyone know of an honest and reliable heating repairman that services the Sunnyvale area?
A few weeks ago, before Mike was discharged from the hospital, I smelled gas (ever so slight) in our furnace area. I called PG&E to come out and check it out and sure enough, we've got a small gas leak coming from the pilot light module. PG&E says we don't need a whole new furnace, but we need to have that part replaced.
So, if you know of anyone, please pass the information along to me at hummer@gmail.com or post a reply to this blog.
Thanks!
Mike got a blood transfusion today because his hematocrit level was low. We were watching the news recently and heard about the blood shortage at the blood banks and the need for blood donors. We're fortunate to have had blood when Mike's needed it thus far. He's had quite of bit of platelets and blood transfused in him. I can't imagine what it would be like to need a transfusion and not have a supply of blood available.
During the hospital visit, Mike also got his infusion of the drug DPHG (for prevention of CMV virus) which he'll continue to get for the first 100 days post transplant. He's still taking a bunch of other drugs (as mentioned in his blog the other day) as well.
I'm hoping that the weather cools down a bit. I think we'll invest in an air conditioning unit before next summer rolls around.
After a month since starting the BMT process and living in the hospital, Mike gets to come home. Obviously, Mike is thrilled to get out of that little hospital room. He was getting a little stir crazy and he'd had enough of the hospital food. I, too, am ecstatic to have him home but at the same time I'm a little nervous. At the hospital, you have this whole network of doctors, nurses, nursing assistants, nutritionists, physical therapists, and room cleaners--when you need any of them, they're just right outside your door. I could leave for a couple hours to run errands and know that he was in good hands. Now since Mike is discharged, it's just him....and me.
Mike met all the criteria for discharge: 1) his white blood cell count is slowly increasing (1.7 on 8/10) and his absolute neutrophil count is >500, 2) he is able to eat solids again and take his medicines orally (and not have them administered through IV), 3) and, he, in general, is feeling okay (able to walk, not disoriented, etc).
Yesterday, during his first night at home, he ran a low grade fever and had some minor diarreah. I have to take his temperature every couple of hours and around 11pm, it crept up to 100.7 F. If it goes over 100.4 F, I have to call the hospital and inform them. They recommended placing a cool towel on his head to help bring down the temperature. By this time, I was taking his temp every hour. By 1:40 AM, his temp had come down to 99.3 F and remained there until 5:30 AM. This morning, his temp is pretty much back to normal.
As his caregiver, I monitor his temp frequently, I administer his meds, monitor his urine and bowel movements, chart his intake of fluids and calories, remind him to do his mouth care (which he should do 4-5x daily) and some light exercises, keep the house as clean as possible, as well as conduct other household items (laundry, cleaning, bill paying, grocery shopping, cooking, etc). I sleep in the guest bedroom and use the guest bathroom so that the master bedroom and bathroom are solely for Mike's use.
Despite being released from the hospital, it does not mean that he is in the clear. His immune system is still slowly regenerating itself and he is still highly succeptible to infections for the next several months. So, unfortunately, no visitors to the house until later. But, Mike would love to hear from you, so phone calls (best time is in the early evenings) and emails are welcome though!
Pretty much every day we need to go back to the hospital--specifically, to the Infustion Treatment Area (ITA) at the Stanford Cancer Center. He gets his blood checked and if any levels are too high or too low, they will treat him accordingly. Today, for example, Mike's magnesium level was too low, so they infused him with magnesium. On Friday, they'll start giving him the drug DHPG intravenously for prevention of cytomegalovirus (CMV) infection.
Overall, Mike is feeling as well as can be (considering the circumstances). So far, he's ahead of the curve. He is a little fatigued and does not have a lot of energy, but that is to be expected after what he's gone through. Again, the nurses remind us that due to the complexity of his leukemia and the aggressive bone marrow transplant protocol that he's undergoing, it will be a yearlong recovery process.
He's one tough cookie and is on the road to recovery!
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P.S. Happy birthday to my sistah, Angie (8/10). Thanks for being a great, supportive sis...love you much.
Okay, if you read yesterday's blog, you know the story. Well, they finally found a nurse who knows how to repair catheter lumens. It was the night shift's resource nurse, Donna. At 11pm this evening, she replaced the two compromised lumens with new ones. It took about 25 minutes for her to repair them. It wasn't all that difficult, but it was quite a production--the nurse had to perform a number of steps and a bunch of safety precautions were taken. Two other nurses were in attendance to assist and observe.
I was tempted to snap a picture of this because Mike looked like he was undergoing massive surgery due to all the medical/repair supplies he had on him...but I don't think nurse Donna would have appreciated it. She was all business, which was good. She came in, did her thing and then wished us a good night.
We have to wait a day before we can start running the IV through the new lumens...and hopefully they should work. We are so, so relieved that Mike did not have to have the whole catheter surgically replaced. Going forward, Mike and I will watch the nurses more closely so that we can avoid things like this in the future. Live and learn.
I just got home and it's nearly midnight. Gotta go to sleep. More updates tomorrow...
Mike's white blood cell count has been going up and down a bit over the past few days. The docs say this in not unusual. Hopefully, it will continue to go to normal range (4,000 (4.0) - 11,000 (11.0)) and not dip down again.
8/5: .6
8/6: 1.1
8/7: .5
8/8: 1.2
The past couple of days have been frustating ones. Things were going well yesterday. Mike's spirits were good. He's doing everything he's supposed to do: drinking plenty of fluids, doing his mouth care, etc. Then, we discovered that his two catheter lumens have leaks in them (near the clamps). Lumens are the tubes that his IV meds go into and his blood comes out of.
Looking back at it, we realized the lumens have been leaking for over a week now. Mike's shirt would always have these dried wet and blood spots where near the clamp areas. We've mentioned it several times to the nurses, but no one knew what it was because there was no visible evidence of leakage. They probably just assumed he spilled something there, so no one really thought anything of it. A couple of days ago, the night nurse was administering his FK506 and forgot to unclamp the lumen, so pressure built up in that area and caused the liquid to squirt out. After she unclamped it, the nurse didn't see anymore leakage, so she didn't do anything further. Saturday afternoon, we mentioned it to our day nurse. She reproduced the situation by clamping the lumen shut and flushed the line. Sure enough, it leaked. Since our nurse has never repaired a lumen, so she asked the charge nurse to assist. The charge nurse, Terry, got too busy and never came by. I saw the charge nurse as she was about to leave after her shift ended and she said ..."sorry, I was too busy"... We were hoping Terry would be back on Sunday, but were told that she's on vacation for the next week or so. Figures.
So, here we are, on a Saturday night with absolutely no one around who knows how to repair lumens. And the only person that knew how to do it (Terry) did not.
What caused he holes in the lumens? Mike and I deduced that the nursing staff was not careful when clamping the lumens. There's a reinforced area on the lumen where you are supposed to clamp and unclamp. Over a week ago, Mike noticed a nurse was clamping the lumens *not* on the reinforced areas. The lumens are pretty flimsy. If you don't clamp it where you are supposed to, the pinch could easily cause a rupture...like in our case.
So, they had to disconnect all of his fluids, FK506, antibiotics, etc. so that it is no longer going through these compromised lumens. A nurse started another line in his arm for the time being so that he can still get his IV meds in him.
The docs and nurses were saying that they might have to rethread the entire catheter line. You should have seen Mike's face when this was mentioned. He's already had his catheter done twice and the second time was not easy due to tissue scarring (from the first catheter placement). When done, Mike's chest was entirely black and blue. And on top of that, he got a staph infection (which the docs say the catheter was the the likely culprit). He doesn't think his body can handle a third redo of the catheter.
It just really sucks to no end. Here Mike is fighting for his life and doing everything he's supposed to do...then some careless nurse screws things up by compromising his lumens. I hope they can easily repair it, but we've already been told that repairing it is unlikely due to the location of the holes. Alternatively, they can run the catheter up thru his arm. And lastly, they can rethread the exisitng catheter. Of course, we're praying for the simple repair and that no other invasive catheter placements will be needed. We'll get more information on this today.
This is so discouraging when we find out about stuff like this--stuff that could have been totally prevented if the nurses would have been more conscientious. He's trying to keep his spirits up, but stuff like this certainly is tough to get over.
Mike and I are waiting each day to find out if the lab results show any increase in the white blood cell count. If there is an increase, that would mean that the new marrow is engrafting and is beginning to do its job. The doctors say it should be any day now.
Today, Mike was really restless and was wanting to go home. He's feeling all caged up in the hospital room . I remind him that we're only halfway there and to have patience. We're probably looking at another week and a half to two weeks, depending on his blood counts. He's bored and agitated. Unfortunately, I'm not funny in any way, so I cannot provide comic relief and am of no entertainment value to him. :-(
Overall, he's feeling much better than before. They've taken him off of TPN today and he will resume eating solids again. Lately, he's had the sniffles, occassional sneezes and minor coughs, combined with a low grade fevers in the evenings (arrond 99.5 F) which the nurses are monitoring it closely.
I really hope the counts start going up. We could use some good news about now.
