Friday, May 28, 2010

Little things

Now that we've dealt with major things for Angela, the minor ones come up. She became very constipated, with a lot of pain, Tuesday. Her doctor couldn't see her, and we ended up in the ER that evening. After laxatives and pain pills there, we went home and the next day she drank the stuff that's used to prep a person for a colonoscopy. It did produce results, but she has continued to have pain and isn't sure she got all the way cleaned out. The pain has been preventing her from using the percussion vest and from deep coughing, so her lungs are getting congested again. It is starting to get somewhat better, and she's been able to use the vest today.

She saw her doctor today and was told that she is stable for the moment, but any little thing could upset her balance again. We still haven't heard any results from last weekend's tests.

Mike's grandmother passed away this week at 99 years old. Her services are Wednesday, so Mike is flying down here Tuesday, and we plan to drive home together afterwards.

We continue to praise God for the health she has and to pray that she can continue in it and improve it over time.

Sunday, May 23, 2010

To San Francisco and Home

Friday morning we left Angela's house at 3:30 for California Pacific Medical Center in SF for her right heart cath and liver biopsy. According to the cardiologist, she does meet criteria for right heart failure and for pulmonary hypertension, but both are mild. He will give his report to her hepatologist who will figure out what this means to her liver, as well as analyzing her biopsy. So, we really did not get any answers yet.

The doctor who did her liver biopsy nicked the liver capsule - I think that means he went a little bit deeper than he had intended - and that increased her risk of post-procedure bleeding, so they kept her overnight for observation. They were able to put her in a private room so I could stay on a cot with her. That was a blessing in many ways.

We got another blessing in the form of a Respiratory Therapist who was able to figure out how to make Angela's mask straps work for her. She's slept with the mask for two nights, now, without any complaining!!

Our trip home was more eventful than we wished. I got a little lost trying to get to the Bay Bridge and went around in circles a couple of times, on the third go around figuring out that I needed to turn right instead of left. There was a lot of traffic getting on the bridge - which I guess isn't unusual. While we were fighting SF traffic, Angela started to get very sleepy, and the oximeter reading was in the 50-60's. I kept trying to get her to breathe deeply, cough, and keep her mouth closed while crossing the bridge, with only occasional success, so when we saw the Hospital sign somewhere around Berkeley, we turned in to the Doctors Medical Center ER. They were very good to us and tried to figure out what had happened, but by then Angela was back to herself and her sats were good. After some more labs and a CT scan to rule out bleeding from the biopsy site, and after about seven hours, they said her sleepiness was probably caused by ammonia build-up, since her level was high, and gave her something for that. They said she would be OK to go home. So I fastened her in her seat, put a pillow under her head, and drove with her sleeping and me not knowing her saturation rate. We got home around 2:30. She was almost too asleep to get into the house, but we managed.

Today, she has felt well. She went grocery shopping but otherwise took it rather easy. I'm going to call her hepatologist tomorrow and see if he'll discuss her results with me on the phone. She has an appointment with him on June 8, but I don't want to stay here that long.

We thank God for keeping us safe in spite of the unexpected duration of our trip.

Thursday, May 20, 2010

Home, at Last

Angela had her sleep study last night. We ended up finding out that the mask she has been using has not been working - it has little nasal "pillows" that sit right at the edge of her nostrils instead of the full-face mask. The reason she has liked it is that it doesn't have a strap that goes behind her neck - those always seem to hurt. Unfortunately, it also allows her to have her mouth open so the air forced into her nose comes right out her mouth -- not good. She did get to sleep with a full-face mask at the sleep center, and they were able to figure out what were good settings for her. Tonight, it was very difficult to get her to use the full-face mask - it really hurts the back of her neck. I'm trying to make adjustments in the straps so that they hold the mask tight enough but not too tight and don't touch the sensitive area on her neck. It's not easy, but she is finally asleep with the mask on.

I'm becoming convinced that the majority of her problems recently may be traced to the lack of oxygen she was experiencing every time she went into REM sleep - that we weren't aware of. My guess is that this has not been doing her liver any good, either.

God continues to bless us with just what we need for the moment, and we are thankful.

Monday, May 17, 2010

Planning to go home

Looks like Angela will be leaving NorCal Rehab tomorrow evening for the sleep lab, where she'll have a sleep study and come home Wednesday morning. Her lungs seem to have recovered back to her normal. She had liver tests today and they were somewhat better - still not even back to what they were before this pneumonia bout, but I'll take better any day. We're still praying that God will heal her liver and planning to go to San Francisco Friday for more tests.

Sunday, May 16, 2010

A long hike

Yesterday, Angela was told that Dr. Fredericks, her San Francisco hepatologist still wants to repeat the right heart catheterization along with the liver biopsy. She had assumed that since her pulmonologist here recently repeated the right heart cath that it wouldn't need to be repeated in SF. She got quite upset and said she won't let them do it because there's no reason. I tend to agree with her, but I'm also more compliant and since they are planning to do both procedures from one stick, I don't see how it will really hurt her more. Dr. Fredericks apparently doesn't trust the results done here - he's sure her liver troubles are caused by congestion from heart/lung failure, but the study doesn't show that. Anyway, I pray that either Angela goes along with the program or we see some other way.

This morning we went on a hike. There is a trail we had seen from the little park outside the rehab hospital that Angela wanted to check out. She walked to where it started with me pushing the wheelchair so she could sit if she got tired and to carry the oxygen. It turned out to be paved and wide enough for the wheelchair, so she decided to start up it and didn't stop until the end, even though it was quite a bit of up and down. I bumped her oxygen up to 3 L/min and she stopped a couple of times for rest. It was a very good workout, and she's had a little nap after lunch.

One of her doctors told us he's working on the sleep study, so I'm hopeful that something will be worked out.

Friday, May 14, 2010

Continued Improvement

Today, Angela & I went outside for a walk, but right then she had visitors, so we had an outside sit instead. She walked outside later with PT. We're still working on getting a sleep study, but she hasn't had any desatting episodes in a few days, which is encouraging. She's been on Lasix daily, and every day she gripes about taking it but then decides it helps her breathe, so takes it anyway. Today we talked to a PA who said she could take a day or two break and see how she does. That made her happy!

We're looking forward to her being released next week and thank God for her continued improvement. We're still praying for improvement in her liver to match that of her lungs.

Thursday, May 13, 2010

Walking outside

Angela got to walk outside today and loved it. She tires rather easily but otherwise seems pretty much back to normal, except for being yellow. I'm glad she's getting rather intense respiratory and physical therapy. If she were home, she would have a tendency to be lazy, but that is not an option. We thank God for her recovery and are still praying that her liver will also be healed.

Slow, steady progress

Angela's case manager is going to try to arrange a sleep study. She has set a tentative release date of next Tuesday. PT signed off on her being able to walk anywhere she wants. She's feeling tired of being sick but agrees that she can build up some strength by staying a few more days. No major milestones, just slow, steady progress. A good day.

Wednesday, May 12, 2010

More small steps

I didn't post Monday because when I got back to Angela's house, her modem/router had died. It was frustrating, but upon a bit of reflection I am glad it happened while I was here and able to get her a new one set up.

Her hepatologist decided he didn't need to see her now but will in San Francisco on the 21st. I was almost hoping he wouldn't need to do the tests since Angela had one of them done at Mercy. But I guess he still needs the biopsy and may want to repeat the right heart catheterization since he's not sure he believes the ones done in Redding.

Angela has been doing well with PT and getting stronger. She got her Foley catheter removed today and the PICC line. She has been having some issues at night with her oxygen saturation rates dropping quite low, in spite of being on the BiPAP. I talked to the night respiratory therapist about it this evening, and he's going to try to find the best BiPAP settings to eliminate that if possible, but he thinks she needs another sleep study. Her pulmonologist said she doesn't - that they can titrate her settings on the hospital BiPAP machine. So we'll see what happens.

God continues to bless us, and we are grateful.

Sunday, May 9, 2010

Staying For A While

Today Angela went for a couple of wheelchair rides outside. After one, we went down the hall and found the PT department door open. (They don't offer PT on Sundays.) No one was there, but we went in and found a large ball and played catch for a while. It was good exercise for her arms. Her breathing continues to be good, but her doctor says she'll stay at the hospital for a while to get stronger. I guess it is for the best, but it doesn't look like she'll get to see her hepatologist who will be in town from San Francisco on Tuesday and Wednesday. He doesn't have hospital privileges here, and the hospital won't release her for a couple of hours to go to his office. Bureaucracy can seem so stupid!

She gets to start walking with PT tomorrow. We're happy about that and looking forward to it.

Saturday, May 8, 2010

Needing Less Oxygen

Today, over a very short period of time, Angela went from her high-flow oxygen back to about what she was using at home prior to getting sick!! I was able to take her outside in a wheelchair for a little walk. She loved the fresh air. We'll try a couple more walks tomorrow, and then Monday she should be able to walk on her own with PT. Then, if all continues to go well, I don't know why they will need to keep her in the hospital. Of course, there is still her liver ...

At any rate, this has been a blessed Sabbath. I don't know about others, but our experience has been that Sabbath always seems to bring blessings for Angela's health, and we are very thankful.

Friday, May 7, 2010

Slow Progress

Not a lot happened today. Angela gets up for meals, vest percussion treatments, and the commode. She had PT this afternoon, but about the time the therapist got there she got a chill and wanted to be wrapped in blankets. She did manage to show him she could get up from the bed and walk a few steps, to the extent her oxygen tubing would allow. He got her a wheelchair and said if Respiratory could figure out a way to meet her needs in a mobile way, she could go outside in it. Maybe that can happen tomorrow. They will try to let her walk Monday.

I'm thankful it is Sabbath. I'll take in some of her favorite music tomorrow, and we'll enjoy that.

Thursday, May 6, 2010

To the Rehab Hospital

Angela moved from Mercy to Northern California Rehab Hospital today. Her oxygen needs are still high, but they are coming down a little. She can get Respiratory Therapy here, and tomorrow she'll be having physical and probably occupational therapy. They are continually monitoring her oxygen saturation, to give her just what she needs.

For me, they have wireless Internet available. They have to enter my computer into their list of approved computers, then I can use it - probably tomorrow morning. That will hopefully mean that I can do some work.

No one has said anything about an expected discharge date. We're just taking one day at a time and thanking God for His continued healing.

Wednesday, May 5, 2010

A Quiet Day

Today was a rather quiet day. Angela was not able to tolerate less oxygen, but continues to do OK on the large amount she's getting. She sat up in a chair most of the day, which was good for her lungs but her feet became swollen. The doctor said that they may send her to the rehab hospital tomorrow. It's the same one she was in a year ago and quite nice. The only reason she needs to go there is because she is still on a high-flow oxygen cannula which I guess isn't available for home use. A respiratory therapist showed her how to hug a pillow to give her cough more strength, and she seemed to like the idea.

We continue to thank God that she is doing as well as she is and to pray that she will keep on improving.

Tuesday, May 4, 2010

Slow progress

I didn't post yesterday because I didn't leave until midnight and when I got to Angela's house I went straight to sleep. I stayed so long because she did better with a full face mask on the BiPAP, and the tech didn't want to leave it on her when she was by herself because she wasn't able to take the mask off herself in case of emergency, like if she threw up. She wasn't nauseated and did well until midnight, so he decided he'd leave it on her after that, even without my being there. Today is a much better day so far. She's been changing from BiPAP to high-flow nasal cannula and back and doing fine. She finally got to get up into a chair, and that made her happy and made her Vest percussion treatments easier and presumably more effective. She has even been able to use the commode. Her oxygen needs are still much higher than can be done at home, but otherwise, she is pretty much herself. We're so glad we can know that God is controlling her life and circumstances, and thank you for your continued prayers.

Sunday, May 2, 2010

Out of ICU

Today, Angela was moved from ICU to a regular room. She's still being closely monitored and is still using more oxygen, at more pressure, than she can at home, but it's nice to be well enough to leave the ICU for really sick people!

Mike flew back to Spokane this evening. I won't be leaving for a while. Angela's liver still isn't doing well, and no one seems to know why. She will be seeing the hepatologist on May 11, but he hasn't had much to offer in the past. Thanks for your continued prayers. Praise God that he cares for each one of us.

Saturday, May 1, 2010

Extubation day

Angela's ventilator was removed today. She did very well. When we left this evening she was getting ready to eat a veggie burger and had been smiling, talking, and singing. She was on a high-flow cannula, which is a step more intense than what she can do at home, but this was a very good day.

Thanks to all of you for your prayers and mostly thanks to God.

Friday, April 30, 2010

Improving

This morning when we arrived, Angela was sitting up in bed, working on her puzzle book. They had thought they might try to get her off the ventilator today, but she said she wasn't ready. All day she has been working hard with the respiratory therapist, exercising her lungs, and she says she's ready tomorrow. Her numbers look better, and I expect she will succeed. I am praying that she does.

Tonight I'm staying at the Hospitality House, a place that Mercy hospital keeps for families of patients who need somewhere to stay. Mike took the car to see his mother, among other people, so this way I can still spend the days with Angela and have a place to sleep. He plans to be back in time to see her tomorrow evening.

We thank God for His continued blessings.

Thursday, April 29, 2010

She's Awake

This morning Angela's chext x-ray actually showed air in her left lung! They decided to see if she could stand not being sedated on the ventilator, and she's doing OK. Twice they tried to see if she was ready to breathe on her own, but she wasn't quite. Maybe tomorrow. Her ammonia level returned to normal, and her mental state seems better than a couple of days ago. It was good to be able to talk to her and have her understand. She was able to write notes to us, too.

We were reminded that things can turn on a dime, but today was continued improvement, for which we are grateful.

Mike's here

Yesterday morning Angela had her CT scan. The doctor showed me the images. Her left lung was totally collapsed, and her heart was so large that it pretty much filled all the space where the lung should be. He had very little hope for her improvement, but decided to do another bronchoscopy. He found and removed quite a bit of mucus plugging that left side. Later the respiratory person could hear some breath sounds there. The rest of the day she continued to stabilize, and today they may try to wean her from the ventilator. She may do OK in the short term, but they still don't think she'll do well long term with three major organs compromised. I think if we could just find a way to keep her oxygenated, she'd do OK, but that is a big IF.

Mike flew down and I picked him up in Sacramento last night - that is why I didn't get this written earlier. It is so nice to have him here. We are going to have to make some decisions that need to be made together. We pray that God will give us wisdom.

Tuesday, April 27, 2010

Mercy Hospital, again

By way of background, after her ordear last year, Angela has recovered her strength nicely, but her liver enzymes have never returned to normal, and she has continued to be jaundiced. In February she had another pneumonia, and Mike and I drove down and spent a week or two. She seemed to recover OK, but hasn't completely regained her strength. Her San Francisco hepatologist wanted her to return to repeat some studies. Then, she developed another pneumonia a couple of weeks ago and had to be hospitalized, so I came down with the thought of helping her through this, then taking her to SF. After she came home from the hospital, we had a lot of difficulty keeping her oxygen saturation up, but she always was able to cough, at least a little, and bring it back up until Sunday night, when it stayed in the 60's (normal is over 90) and I took her to the ER. She was admitted to the local ICU, where she didn't improve.

Then this afternoon, her doctor decided she was not responding to the treatment and was most likely going to need to be intubated, and she would rather that be done at Mercy in Redding, where they are much better equipped, so she sent her by ambulance. At Mercy, she was intubated, bronchoscoped, and a catheter placed into her heart to measure pressures. She started doing a lot better and when I left she was apparently comfortable, sedated, and showing good numbers on all the monitors. She's scheduled for a couple of tests tomorrow, and her pulmonologist needs to consult with the SF hepatologists, and hopefully, someone will come up with some reason for this and some way to fix it. At least for now she is stable, and I am going to get some sleep. I know she is in God's hands, and there is no better place to be, and can find peace in that.