Roller Coaster Week

I went to bed Sunday with a slightly scratchy voice, which I attributed to allergies but my body had other plans for me and Monday began the downward sprial. I woke up at 2:30 with a headache so Mike suggested I take my temperature and it was 100.7 - close to a fever but not necessarily something that would get me in the hospital. About 45 minutes later Mike woke me up so I could take my temperature: 103.9. Now THAT necessitated a trip the MD Anderson ER. We quickly packed up 2-3 days worth of clothes in a sleepy haze. My brother was leaving on Monday we had to wake him up so we could figure out how to get to the airport. Luckily, Mike's Mom was still there because she was also driving back to Austin so I suggested she drive him, which she did, and we headed to the ER at 4am. Mike sped through the darkened town and we made good time getting here (no traffic!). Unfortunately, we could not find the MD Anderson ER very easily to we circled the streets several times -finding the Children's hospital ER, the Methodist Hospital ER and every other ER but ours. We finally found it and I checked in. They immediately hooked me up and drew blood. They were admitting me, but it took them 16 hours to find me a bed. Yikes! I was pretty miserable and their hard-as-a-rock bed didn't help.

After I finally got moved to the 12 floor, my day didn't get any better. I spent the first few days fighting fevers, nausea, and a teerrible cough - which gave me fevers and the urge to puke. It was pretty rough and I didn't sleep well because of the coughing spasms, which went on and on for about 20 minutes. They gave me 4-hour and 6-hour cough medicine, which worked for the first two hours and then just stops working. On Tuesday, they sent me downstairs for a chest x-ray because they heard a touch of pneumonia when they listened to my chest and I hacked up a lung. A nurse walking by commented that I should try sucking on some hard candy to stop the cough. She brought me a couple and it worked! When I got back to my room, I asked cousin Gina to pick me up some mints at the store.

Cousins Gina brought Liz up here so the doc could do some tests on her, which turned into a full day of bloodwork, an EKG, and urine testing. She also met with the doc (Mike came down for that since I was completely wiped out. She is a complete haplo-identical match and they're going to do actual bone marrow donation vs the stem cell transplant. They're going to knock her out under general anesthesia. I didn't want so scare here, but I did give her the facts. It doesn’t hurt a bit, but the pressure is the worst part. I've had 5 of them and I was fully awake. I think being knocked out will completely help control the pain. I think they're going to put it into me as soon as they are done withdrawing from her. I wonder if I'll be awake with my ativan pills? We'll have to see. The want to start 11/12, 11/15, or 11/18 - but it depends on me kicking these fevers down and have more than zero white blood cells.

The worst day was yesterday. I started out normal, but I had a couple of fevers. Then my blood pressure dropped and kept getting lower. When it hit 70, it scared the crap out of my team and they called in the ICU team. The first story was that a member of the ICU was going to come up here to closely monitor me. As she was heading up, they told me that I was being transferred so Mike rushed to pack up all of our crap so we'd be ready when she got here. She arrived and hooked me up to check my heart rate and a whole bunch of other things. I had tubes coming out everywhere! Plus the ICU scared me, but probably not as much since I was feeling so out of it. The ICU nurse monitored me while they looked for a bed. At the same time the were dumping a ton a fluids in me to help the blood pressure rise. A couple of hours later, my blood pressure started going up to 90. When it hit 100, they decided not to transfer me. Yay. They monitored me overnight and my blood pressure remained in the 100s.

When I tried to sleep last night, I coughed so bad I didn't get much sleep. I started hallucinating that random nurses were coming in my room to talk to me so I kept waking up just to check. My hallucinations were asking me questions and either I'd answer then or there'd be nobody in the room. It was a lonnnng night.

Angela wrote the above words, but has been unable to finish the post, so I (Mike) will step in.

After the ICU scare, she has continued to progress in the positive direction. Her vitals, blood pressure, oxygen levels, fevers, have all gotten better. Hard to tell exactly why, but I think that once the doc's found out for sure she had pneumonia - they were able to address that with a more targeted approach.

Over the last 2 days, her vitals have been stable, no fevers at all, coughing is under control and diminishing, and she is getting lots of sleep - which she desperately needed. For the last 2 nights she has slept much better (not great) but better. Additionally she has been able to sleep during the day. The one thing that has not gone away is her hallucinations. The doctors said that it was a side effect of one of the antibiotics. So hopefully they will go away soon. I just got an update on the hallucination….they are a side effect of the sleeping pill we gave her to help her sleep. It should wear off today!

The doctor also said that her “counts” (blood work and immune system) are on the rise. Her white blood counts (WBC) was 0.0 for about 2 weeks so it is ABOUT time. Yesterday it rose to 0.3 and should continue to more than double every day. The doc’s also said this morning that she “should” be released this coming week. WE HOPE!

11/9 Update – Yesterday the doctors said we were going to be released this morning. However, Angela had another coughing fit last night that we couldn’t get control of and it caused a fever. When the doctors saw the fever they said they wanted to keep her here another day for monitoring. As bad as I want to leave, it works out because Angela had a bone marrow biopsy and a chest CT scan today. It would have been late when we left the hospital anyway. The biopsy is to verify (hopefully) that the Leukemia is in remission and the chest CT is to check the status of the pneumonia. Additionally, the doctors promised us (again) that we will be going home (texas) tomorrow.