It has been 5 days since I got home from the hospital and I am still exhausted. I am no longer peeling but I have a red,bumpy rash all over that is making me crazy. I have lost 40 of the 50 pounds that I gained. Still have lots of swelling in my ankles and feet. I am so tired. Today I slept unil 3pm.
We are leaving for Mexico on Friday. I am trying to get excited, but I'm so tired.
We are so thankful for our friends and family. We haven't had to worry about a thing during this time. We continue to be amazed by by all of you. We cannot thank you enough!
Tuesday, November 15, 2011
Sunday, November 13, 2011
Normalizing
Heather is feeling better and better. She got another good night's sleep last night and woke up with a bit more energy than yesterday. She was able to expend that energy quickly though. A shower and a trip to the lab for more inaccupuncture. They dug around in her arm a bit and said that she should go home and try to hydrate so they could find a vein.
When she got home from the blood draw attempt, she was pretty well wiped out. She spent the afternoon on the couch drinking water and thinking big vein thoughts. Right now, her dad has taken her back to the lab to give them another shot (pun not intended).
Other than the blood draw attempts, her recovery continues nicely. As I said, it doesn't take much to tucker her out. Her skin is looking better, the skin box is nearly full... Her coordination is improving and her appetite is coming back, which is good because as many of you know we are getting delicious meals dropped off every night and I am going to need her to step up and start doing her part, otherwise I'm going to have to dig out my big boy pants to accommodate my expanding waistline :)
Hopefully by the time you are reading this, Heather is back home, relaxing after a successful blood draw. If not, we will let the vultures go at her again tomorrow...
When she got home from the blood draw attempt, she was pretty well wiped out. She spent the afternoon on the couch drinking water and thinking big vein thoughts. Right now, her dad has taken her back to the lab to give them another shot (pun not intended).
Other than the blood draw attempts, her recovery continues nicely. As I said, it doesn't take much to tucker her out. Her skin is looking better, the skin box is nearly full... Her coordination is improving and her appetite is coming back, which is good because as many of you know we are getting delicious meals dropped off every night and I am going to need her to step up and start doing her part, otherwise I'm going to have to dig out my big boy pants to accommodate my expanding waistline :)
Hopefully by the time you are reading this, Heather is back home, relaxing after a successful blood draw. If not, we will let the vultures go at her again tomorrow...
Saturday, November 12, 2011
Home Sweet Home!!!
Well, the cardiologist did not walk through the door, but the next best thing happened shortly after the last post. The nurse practitioner came in and said that he was able to talk to the cardiologist, who sent his apologies for keeping us waiting, and they had decided that we could go!!!! Not quite how we planned on spending 5 hours, but it wouldn't have been much different at home, except we would have been at home.
So, we left the hospital at about 3:30. Just in time for a ridiculous amount of non-work day traffic. It took us about two an a half hours to get from the UW to our house. But we made it.
Heather was desperate to take a bath and try to get all of her flaky skin off. Straight upstairs, to the bath and then to bed. The day had taken it's toll on her. She napped for a bit then came downstairs and was able to eat a little tortilla soup.
Not long after that, she was wiped out again. It was pretty tough for her to get into our high bed after her bath, so we decided that the best place for her to sleep was the couch downstairs. She was fast asleep by abut 9:00 last night and did not move until about 9:00 this morning!!! Much needed uninterrupted sleep.
When she woke up, she looked and felt great!! It still doesn't take much to wear her out. She went upstairs after some coffee and took a shower, then straight to bed. Post nap, she was able to come downstairs eat some food and go through some mail.
She is definitely on the road to recovery. Her skin is looking better and she is moving around much better. She still has a long way to go, but is pointed in the right direction...
So, we left the hospital at about 3:30. Just in time for a ridiculous amount of non-work day traffic. It took us about two an a half hours to get from the UW to our house. But we made it.
Heather was desperate to take a bath and try to get all of her flaky skin off. Straight upstairs, to the bath and then to bed. The day had taken it's toll on her. She napped for a bit then came downstairs and was able to eat a little tortilla soup.
Not long after that, she was wiped out again. It was pretty tough for her to get into our high bed after her bath, so we decided that the best place for her to sleep was the couch downstairs. She was fast asleep by abut 9:00 last night and did not move until about 9:00 this morning!!! Much needed uninterrupted sleep.
When she woke up, she looked and felt great!! It still doesn't take much to wear her out. She went upstairs after some coffee and took a shower, then straight to bed. Post nap, she was able to come downstairs eat some food and go through some mail.
She is definitely on the road to recovery. Her skin is looking better and she is moving around much better. She still has a long way to go, but is pointed in the right direction...
Friday, November 11, 2011
Done... ish
Well, we are finally going home, we think. Heather got some sleep last night, and woke up feeling better this AM. She was able to get up, take a shower and even blow-dry her hair.
Not long after she was done showering, the "team" came by and said they were impressed by how much better she looked today. Time to go home!!!
Kind of... That was at about 9:00 this AM. It's 2:00 now and the bags are packed, heather is dressed, and we are still sitting in the room. The old hurry up and wait. Her heart rate has continued ticking along at about 120 beats per minute. Not terribly fast, but faster than it should be. So the cardiologist that was contacted thought he should come by for a consult.
Not a bad idea, we thought when we assumed that he would be by in the next hour or so. It's now been 5 hours.
Heather wouldn't be doing much different at home than she is doing here - laying down, recovering - but now that she has the energy to make the trip and has been told she could go, she would much rather be doing a whole lot of nothing there.
Keeping our fingers crossed that the cardiologist is about to walk through the door...
Not long after she was done showering, the "team" came by and said they were impressed by how much better she looked today. Time to go home!!!
Kind of... That was at about 9:00 this AM. It's 2:00 now and the bags are packed, heather is dressed, and we are still sitting in the room. The old hurry up and wait. Her heart rate has continued ticking along at about 120 beats per minute. Not terribly fast, but faster than it should be. So the cardiologist that was contacted thought he should come by for a consult.
Not a bad idea, we thought when we assumed that he would be by in the next hour or so. It's now been 5 hours.
Heather wouldn't be doing much different at home than she is doing here - laying down, recovering - but now that she has the energy to make the trip and has been told she could go, she would much rather be doing a whole lot of nothing there.
Keeping our fingers crossed that the cardiologist is about to walk through the door...
Thursday, November 10, 2011
Not yet, but soon.
Heather's recovery remains slow, but steady. If she was the tortoise that won last time, this time she is the tortoise that showed that tortoise how to do things.
It was a little bit of a rough night. Since she completed the early removal of her PICC line the other night, blood draws have become a bit more problematic and tortuous. She usually has pretty good veins, but now they are buried under a bunch of extra-cellular fluid and everyone is having difficulty finding them. Not for lack of trying. She is beginning to feel like they are attempting to cure her with the worst acupuncture ever.
Today the morning visit by the "team" included the advice that she stay here one more night. I had a pretty good idea that this was going to be the case. Heather took the news well. We are both anxious to get home, but she is just not ready. Still moving pretty slow, but was able to sit in the shower and rinse off. The shower again pretty much wiped her out.
The nurse practitioner just popped his head in and felt that Heather is looking much better than when he saw her earlier today. He felt optimistic that she will be able to get out of here tomorrow morning. Time will tell.
Heather's spirits are on the up-swing. She has cracked a couple of smiles this afternoon along with a couple of jokes. Her skin is peeling so much and she has accumulated such an impressive collection of skin for the skin box that Goldmember himself would be jealous!!
Here's to going home tomorrow.... (we hope!!)
It was a little bit of a rough night. Since she completed the early removal of her PICC line the other night, blood draws have become a bit more problematic and tortuous. She usually has pretty good veins, but now they are buried under a bunch of extra-cellular fluid and everyone is having difficulty finding them. Not for lack of trying. She is beginning to feel like they are attempting to cure her with the worst acupuncture ever.
Today the morning visit by the "team" included the advice that she stay here one more night. I had a pretty good idea that this was going to be the case. Heather took the news well. We are both anxious to get home, but she is just not ready. Still moving pretty slow, but was able to sit in the shower and rinse off. The shower again pretty much wiped her out.
The nurse practitioner just popped his head in and felt that Heather is looking much better than when he saw her earlier today. He felt optimistic that she will be able to get out of here tomorrow morning. Time will tell.
Heather's spirits are on the up-swing. She has cracked a couple of smiles this afternoon along with a couple of jokes. Her skin is peeling so much and she has accumulated such an impressive collection of skin for the skin box that Goldmember himself would be jealous!!
Here's to going home tomorrow.... (we hope!!)
Wednesday, November 9, 2011
Still here...
Heather's recovery this time is much slower than last time. Side effects were a little worse this time as well. She really wants to go home, but is not ready. She can't get out of or back into bed without quite a bit of help, and a trip to the bathroom (about 10 feet round trip) completely saps her energy.
She has been moved to what is called "floor care." This does not require continual monitoring of her vitals, which is really nice because her skin really took a beating this time, especially both biceps where the BP cuff has been. We actually moved rooms today, so at least we have a different view. It's also a quieter room, we are away from the noise of all the other patient's monitors.
We hopefully will be going home tomorrow. Right now I'm not sure that will happen. She just completed a bathroom trip and is exhausted and unconscious. Rest Heather.....
There's no place like home....
She has been moved to what is called "floor care." This does not require continual monitoring of her vitals, which is really nice because her skin really took a beating this time, especially both biceps where the BP cuff has been. We actually moved rooms today, so at least we have a different view. It's also a quieter room, we are away from the noise of all the other patient's monitors.
We hopefully will be going home tomorrow. Right now I'm not sure that will happen. She just completed a bathroom trip and is exhausted and unconscious. Rest Heather.....
There's no place like home....
Tuesday, November 8, 2011
Nearly There
Well, as I thought, she did not get her 3:00 dose yesterday, and because of the rapid and then irregular heart rate, they decided that they were not going to give her the 11:00 dose either.
So.... She is done!!! 10/14 doses completed this time down. For a total of 24/28 doses between the two trips to the UW. She is worn out!
She slept pretty good last night, up until about 2:30 in the morning, when I heard her monitor dinging because she had pulled an electrode or two off. I got up to fix it, and while I was placing new electrodes, I noticed a purple string laying on her bed by her pillow. "What could this be?" I wondered. Turns out she didn't just pull electrodes off, she managed to pull her PICC line out!!
Fortunately she was off the blood pressure medication by then. I grabbed the nurse who came in and inspected the end of the PICC line and thought a piece had possibly broken off in Heather's vein. Minor panic ensued until the PICC nurse came in and verified that the PICC was intact. Crisis averted. Then we had to try to convince a confused, drugged patient that there was nothing to worry about. Fifteen minutes and some anti-anxiety medication and she was able to relax and fall back to sleep. When she woke up this morning, she told me about a dream she had in which she pulled out her PICC line.... Not a dream Heather :)
Today, she has been sleeping most of the time. After she had the heart rate issues yesterday, the doctors ordered an echocardiogram (essentially an ultrasound of the heart) to be sure that the heart rate issues were caused by the IL-2 and not some other underlying issue. We haven't heard the results of the echo yet, but should a little later today.
So now, more rest and observation. She is still managing to sleep, so we have good hopes of going home tomorrow.
Can't wait....
So.... She is done!!! 10/14 doses completed this time down. For a total of 24/28 doses between the two trips to the UW. She is worn out!
She slept pretty good last night, up until about 2:30 in the morning, when I heard her monitor dinging because she had pulled an electrode or two off. I got up to fix it, and while I was placing new electrodes, I noticed a purple string laying on her bed by her pillow. "What could this be?" I wondered. Turns out she didn't just pull electrodes off, she managed to pull her PICC line out!!
Fortunately she was off the blood pressure medication by then. I grabbed the nurse who came in and inspected the end of the PICC line and thought a piece had possibly broken off in Heather's vein. Minor panic ensued until the PICC nurse came in and verified that the PICC was intact. Crisis averted. Then we had to try to convince a confused, drugged patient that there was nothing to worry about. Fifteen minutes and some anti-anxiety medication and she was able to relax and fall back to sleep. When she woke up this morning, she told me about a dream she had in which she pulled out her PICC line.... Not a dream Heather :)
Today, she has been sleeping most of the time. After she had the heart rate issues yesterday, the doctors ordered an echocardiogram (essentially an ultrasound of the heart) to be sure that the heart rate issues were caused by the IL-2 and not some other underlying issue. We haven't heard the results of the echo yet, but should a little later today.
So now, more rest and observation. She is still managing to sleep, so we have good hopes of going home tomorrow.
Can't wait....
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