tag:blogger.com,1999:blog-9674270482478763482024-03-12T16:10:50.304-07:00HealingOfAngelaTerri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.comBlogger82125tag:blogger.com,1999:blog-967427048247876348.post-75533920414453549792012-09-07T14:04:00.000-07:002012-09-07T14:04:32.600-07:00Service DetailsToday, we picked up Angela's ashes. Tomorrow is her memorial service, 2:30 at Red Bluff SDA Church. Sunday, we plan to scatter her ashes from the Golden Gate bridge, and Monday we'll start home. We have a friend who is doing an estate sale, starting today. She had an amazing amount of stuff in her house. We're staying tonight with another friend out of Redding. It was sad, this morning, watching strangers leave with her stuff, but I told myself to remember that those people were being blessed by her even now. This weekend will be hard, I'm sure, but the sorrow is for ourselves, missing her, and not for her, since she is waiting for Jesus and when we see her again she will be in perfect health, without any limitations. May that day come soon!Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-24526015647919021402012-08-29T12:23:00.001-07:002012-08-29T12:23:11.822-07:00Sleeping in JesusAngela passed away this morning. There were just too many things going wrong for her to overcome. It is comforting to know that the next time we see her, she will be in perfect health. Praise God for that hope.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-26907905582239644922012-08-27T20:42:00.001-07:002012-08-27T20:42:41.778-07:00ChallengesSabbath, Sunday, and today have not seen many lucid moments. On Sabbath, Angela pulled her NG tube out. She has been drinking quite well, including a smoothie that I make her each morning, packed with everything healthy I can think of, including wheat grass at her request. Because of its strong flavor, I decided yesterday to see if I could hide Lactulose in it today, and it worked. She hadn't had any since she pulled the tube, and her ammonia level just about tripled. If this doesn't continue to work, we're down to reinserting the NG tube, which I fear will require sedation and/or restraints, trying to get a stomach tube put in surgically, or just providing her with comfort care and letting nature take its course. Placing the stomach tube will require someone (I'm not sure if it has to go to a judge or just be signed off by two physicians) to agree that she is incapable of making her own medical decisions as she told the doctor that she does not want one. She has also told me she doesn't want to die, but she is convinced that she doesn't need her medicines and/or someone is giving her the wrong ones. One of the doctors she has seen for years came by today and said she's just got too many things going wrong, and he doesn't think she can pull out of it. I understand but I'm not ready to stop fighting yet. I'm not convinced that everything can't get balanced and give her a reasonable life for another while. But it is hard fighting for her when that means fighting her. This confusion is not fun to deal with. I've stopped asking God to heal her and have started asking him to do what He knows best. I only want her to have peace. Some of her confusion has been anything but peaceful. I'm so glad for the hope of the resurrection, when she will have a perfect body and mind, but if it is God's will, I'd like her around here a while longer first. Mike is considering flying down for the long weekend. It would be nice to have him here.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com1tag:blogger.com,1999:blog-967427048247876348.post-91913238418475990602012-08-24T22:50:00.001-07:002012-08-24T22:50:16.470-07:00A Good DayToday was the best day Angela has had since last Thursday. She was mostly not confused, ate better, and worked hard at physical therapy. I'm trying not to get too excited, as I try not to get too down when things don't go so well. But I am thanking God for the progress she has made. She is wanting the NG tube out, but is not convinced yet that it is in her best interest to take all her medications. This, however, is not new. So, for now at least, it will have to stay in place. I hope we'll be able to have a happy Sabbath. Her roommate went home today, so unless someone else moved in tonight we may have a "private" room, though I'm surely not counting on it. We found last weekend that the Physical Therapy gym is a quiet place when no one is there (they close for Saturday and Sunday). Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-89990002873608750632012-08-22T10:39:00.000-07:002012-08-22T10:39:06.674-07:00NG TubeYesterday, when I arrived, Angela was herself, for the first time in several days. But it didn't last long, and she refused her Lactulose. After a battle of about an hour, I only was able to get half of it down her. We tried the Geodon again since the last time it made her take the Lactulose, but this time it didn't have that effect. I really don't want to do that any more, especially since it isn't working. This morning, she was still very confused, but she did eat a good breakfast. But, she still continued to refuse her meds. The dietitian told me again yesterday, and I think this time it stuck, that she needs more protein for healing, but without the Lactulose dietary protein turns into ammonia. So I consented to a feeding tube this morning. They will also start the 2-3 day process of getting her a PEG tube, for feeding and meds directly into her stomach. It takes that long for scheduling and evaluation, I am told.<br />
I continue to be amazed at the way our bodies, when they are healthy, balance everything so easily because when someone loses that balance it is so difficult to regain it, and so many factors that need to go into that process. <br />
We also found out yesterday that her UTI is VRE (Vancomycin-Resistant Enterococci), and the best antibiotic is one she is allergic to. So, that is also undoubtedly contributing to her confusion. They are using another one I'm hopeful will work.<br />
We are blessed to have a competent and compassionate team with many specialties to guide in her care. I continue to believe that this is a bump in the road and not the end of the road, and I am hopeful that getting her appropriate nutrition and medication will get her over it.<br />
Of course, she continues to be in God's hands, and there is no better place.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-69392812662039574432012-08-18T21:16:00.000-07:002012-08-18T21:16:53.162-07:00Some "down" daysAfter Thursday's wonderful day, Angela spent Friday and today in a confused mental state. This morning, she was so out of it that she only drank part of a protein shake for breakfast and I had difficulty getting her Lactulose down her. She has also developed a urinary tract infection, and one thing caused by that is confusion. I think that's #5 of things attacking her brain. Anyway it's being treated and apparently responding. Her ammonia level was high again. Her CO2 retention does not appear to be the primary issue at this time, so I'm hoping that with a few more doses of Lactulose her confusion will abate. We shall soon see. At any rate, it appears that Lactulose will be a big part of her life from now on. She had a couple of visits from her friend - Friday night she seemed to be calmed and cheered, but today she didn't pay as much attention and didn't even sing along with her friend much. She spent most of the day in her wheelchair, using her arms to move herself around the corridors - excellent exercise, I believe. I hope she sleeps well tonight. She hasn't been, saying she is afraid to go to sleep. In her confusion, she thinks someone is swapping her meals with someone else and giving her medicines she shouldn't be taking, so it's been a challenge to get her to eat and take her meds, but God is good, and so far she is doing at least an adequate job of both.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-47685744340074808512012-08-17T05:07:00.001-07:002012-08-17T05:07:24.099-07:00A Wonderful DayWednesday wasn't a good day at all. Angela spent nearly the entire day confused and the doctor was asking us to think about a plan - should we put her on a ventilator, etc.<br />
But Thursday was a complete turnaround. She spent the entire day lucid, walked (with assistance) a couple of times, did exercises at PT, played games, showered, started a new breathing therapy that seemed helpful, and met a dietitian who has expertise at using foods to complement medicines and their side effects.<br />
I really don't like this roller coaster, but it is comforting to know she's in God's hands, and I do feel blessed with a day like yesterday. We'll see what this new day holds.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-36517565559621012182012-08-15T06:46:00.000-07:002012-08-15T06:46:00.262-07:00To the Rehab HospitalYesterday afternoon Angela was transferred to the rehab hospital - one step closer to coming home. She still cannot stay off the BiPAP for more than 2-3 hours, and the settings that are needed are causing more pressure than she is comfortable with, but I think she's making progress. She is walking with assistance quite well, and farther each time. <br />
Her doctor, though, does not expect her to do well. He says her liver is getting worse and doesn't know how long it can last. However, we have been told similar things in the past, and I think she could have more life - and quality life - ahead of her. At any rate, she is in God's hands, as always, and trusts in Him. She is finding joy in singing scripture songs.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-21395853073040034092012-08-13T00:44:00.000-07:002012-08-13T00:44:00.879-07:00More Ups and DownsAngela continues to get stronger. She is walking with Physical Therapy further each time. But, she is still having episodes of confusion. Her ammonia level has risen a bit. The doctors have informed me that it is not the ammonia that causes the confusion - it is something else that hasn't been really identified, but which seems to go up and down along with the ammonia, at least somewhat. I continue to be amazed at the complexity of our bodies and how we don't notice all that is going on, as long is everything is working right.<br />
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So, they will give her some Lactulose along with treating her lungs. It may or may not make a difference. <br />
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Tonight, she is supposed to try sleeping using her home BiPAP while being monitored and then have arterial blood gases drawn in the morning to see if it is adequate to keep them OK. Her BiPAP masks - she has two so she can alternate - weren't fitting her right this afternoon and she was getting frustrated, as well as starting a small sore on her nose. I hope she can calm her frustration enough to allow the respiratory therapist to put one of the masks on her. Sometimes it works better when I'm not there. She hasn't been sleeping well because of the monitors in her room. Something is always alarming, and she gets frightened and can't sleep. I asked the nurse to try to turn the alarming off for her room, but she wasn't sure that was possible. She is in a unit where someone in another room down the hall is always watching her, and the rest of the patient's, values, and I can't see the reason why the alarms need to be so loud in her room to wake her up, but we'll see what they were to arrange. I expect she will be released in a few days and hope we'll be able to handle whatever comes up at home.<br />
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We continue to thank God for the recovery she has had and to pray that it will continue.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-84891508841972284302012-08-09T10:09:00.001-07:002012-08-09T10:10:05.418-07:00ImprovingAfter spending 1 night in St. Elizabeth's ICU in Red Bluff, Angela's doctor asked me if I'd like her transferred to a lung specialist in Redding, so we've now spent 2 nights at Shasta Regional Medical Center in the CICU. Yesterday, she was back to being herself mentally and sat up in a chair without the BiPAP for six hours, feeling great. But, it was too much, too soon. In the evening, she became confused again, and blood gases were bad again. She went back on her BiPAP and by this morning is again back to herself. Today, they plan to transfer her out of the ICU and keep track of her labs, maybe keeping her on BiPAP a bit more. She gets tired of having the mask on all the time, but it seems to be what is keeping her lungs on track. She may have another sleep study before she goes home, to be sure her equipment is set right. She does seem to be headed in the right direction, but things need a bit more tweaking before we're ready to tackle being home, without all the monitors and fancy equipment. We are thankful to be indoors here, where a jacket is comfortable, when outside it is in the triple digits. God has certainly blessed us and we are grateful to have the Angela we know and love back from wherever a mind goes when its environment is not providing the right support..Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-60738516190142965832012-08-06T23:08:00.002-07:002012-08-06T23:08:35.373-07:00Back to the HospitalThis morning, Angela's oxygen saturation rates dropped to the low 60's (They should usually be around 90), and I couldn't get them up even with BiPAP and increasing her oxygen flow to the concentrator's maximum, so I called 911. She ended up being admitted to the ICU, but is holding her own and seems comfortable. They will retest her arterial blood gases in the morning - they were pretty bad today - and see where we go from here. Apparently her lungs aren't happy with her total lack of moving the past two weeks. They have a lot of crackles, like she needs to cough, and some degree of collapse but apparently no pneumonia. The BiPAP helps with the oxygen and CO2, but she can't cough effectively while wearing it. Most of the time she is peaceful, and was even singing a little, but sometimes she seems troubled about not completing what she was given to do, which seems to me something like saving the world. I try to reassure her, and I think she is hearing me. Her mental state is still very changeable - sometimes she is her usual self, but more often she is somewhere else. Sometimes she will answer questions, sometimes she ignores them. I pray that God will keep His arms around her and give her peace, as well as healing if it is His will. A friend posted a Bible verse on Facebook today that I really like. Deut 31:8. It says: "<span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 17px; text-align: left;">The Lord himself will go ahead of you. He will be with you. He will never leave you. He'll never desert you. So don't be afraid. Don't lose hope." </span></span>Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-43632315459755277262012-08-05T00:19:00.000-07:002012-08-05T00:19:04.373-07:00A Happy SabbathOn Friday, Angela didn't eat or drink much of anything and took about half of her Lactulose. I was really getting concerned that she would dehydrate herself. But today she ate two good meals, drank some water, and took all her meds. She is still telling me that she is allergic to water and has rabies, but not all of the time. Her friend came to see her today and sang some songs with her, and she seemed to really enjoy that. She also got up twice, with lots of help, to go to the bathroom. So, all in all, we had a happy Sabbath. God is good.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-9130253352224098862012-08-02T23:24:00.001-07:002012-08-02T23:24:49.819-07:00HomeWe almost literally got kicked out of the hospital today. According to the doctor, they weren't doing anything we couldn't do at home, but the supported living providers Angela has are not allowed to give her insulin, and she may not be able to give it to herself some of the time. I am allowed to give it to her, so we ended up coming home with that plan for the short term. Long-term, we'll have to figure out later. The issue is still how to get her to take the Lactulose when she isn't thinking right, and in the second place, get food down her (can you believe I'm writing that?). She wasn't lucid very much today, mostly rambling, but twice she was just aware enough to take her Lactulose and eat. I believe in order for her to recover she will need to do at least this, so the day has ended well. She's sleeping, and I'm praying that she will continue to take this med until it can do its job and clear out the ammonia. <br />
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I'm also being forced to consider whether or not I will ask the doctors to use a feeding tube - through the nose - to force her to take the med and food if she is unable to cooperate. Her doctor is not optimistic about her recovery, but she doesn't know Angela well. While I know that her liver failing is likely at some point, I'm not ready to give up on her yet. Still, I don't want to put her through the painful procedure of inserting the tube and probably uncomfortable feeling of having it there only to prolong her life if that won't return any quality to it. I pray that if that decision needs to be made, Mike and I will have the wisdom to do it correctly.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-84917258036765776702012-08-01T22:57:00.000-07:002012-08-01T22:58:20.423-07:00Psych Meds or NotThis morning, Angela talked nearly nonstop, all rambling, but she was, at least for the most part, not agitated. She was also refusing all medications and all food. Her doctor wanted to give her some psych meds. These scare me, and even those trying to get me to consent couldn't say with any confidence that they would help her. They were considering two - Geodon and Invega. Geodon has the advantage of being able to be given in a shot, so Angela wouldn't have to do anything. However, it is metabolized through the liver - not a plus. Invega is not metabolized through the liver, but it is a time release oral pill, so Angela has to voluntarily swallow it. Early in the afternoon, I consented to the Geodon in an effort to get her to take the Lactulose, which still seems the only avenue to recovery for her. And it worked. Twenty minutes after the shot, she was conversing normally, agreeing to take her meds, and eating a little lunch. Then she fell asleep, which was expected. However, she only slept three hours and then resumed her rambling. The plan is for them to repeat this 12 hours later, around 2 am, and if possible give her one of the Invega tablets. They only have to be taken every 24 hours, and the hope is that they will keep her amenable to taking the Lactulose until it can bring down her ammonia levels and she can think straight. <br />
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Her doctor wants to release her tomorrow, saying that they can't do anything for her at the hospital that can't be done at home. They have also offered a nursing home as an alternative. I can't imagine sending her to a nursing home to be ignored! I made arrangements with the social worker to have in place what she will need at home. <br />
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Then, in the evening, Debbie--the owner of the company that provides her supported living services--came to visit and said she did not feel Angela was ready to go home. I had previously told her doctor I would feel much more comfortable if she stayed in the hospital until it could be figured out just which psych meds would be beneficial and the appropriate amounts. The doctor said that could be done at home. Anyway, Debbie is going to go to bat for us tomorrow morning in an effort to stay in the hospital a little longer. We are blessed because she has fought this kind of battle before and knows who to enlist and what steps to take.<br />
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We continue to pray for peace for Angela and wisdom to make some very difficult decisions and are so thankful for all those who are praying with us.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-1057727610918007262012-07-31T23:15:00.002-07:002012-07-31T23:15:26.880-07:00A Roller-Coaster DayThe first thing this morning, Angela was being combative to the point of needing restraints. Her doctor saw that and ordered a psych consult. She had no interest in breakfast or morning medications. But by lunch, she was ready to eat some fruit and a protein shake, and by dinnertime she was her old self, mentally, eating a good meal and taking her Lactulose, the only way - to my understanding - that the extra ammonia can be cleared from her system. She got a shower this evening, even though her mental state had reverted a bit, and with a lot of coaxing took another Lactulose dose. She was sleeping when I left. If she will let them, they will draw blood around 4:00 tomorrow morning to check how the ammonia is doing. It is great that her caregivers are there with her, too. Overall, I would say that today was a small step in the right direction. I thank God and pray that this trend will continue, if it is His plan for her.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-8204345888407124212012-07-31T01:01:00.000-07:002012-07-31T01:01:25.132-07:00Two Good YearsI note that the last entry here was over two years ago. Angela has been quite healthy during this time. Her liver has not returned to normal and, in fact, she has been jaundiced to one degree or another and has continued to have elevated liver enzymes during this time, but she has been able to do the things that make life good for her. <br />
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In the last few months, she has started retaining more fluid and, as always, has been very resistant to increasing her diuretics. But she was well enough to visit us about a month ago for our family reunion and celebration of Mom & Dad's 60th anniversary. She thoroughly enjoyed seeing everyone and we all enjoyed her. She did appear more frail than before, but was able to walk a little and play croquet. <br />
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Last week, she went to the ER for hip pain, but they looked at how much edema she had and focused mainly on that. She was admitted and some tests were done. Friday morning she told the doctor that she wanted to go home instead of to a nursing home as had been recommended, so she was released home. By that evening, she was becoming irrational, with very strange behavior, some of it outside, obvious to neighbors. Her caregivers took the necessary steps to have her readmitted to the hospital, and she has not been herself since then. Her brain is being attacked by her deteriorating liver, primarily by the increasing ammonia concentration in her blood which prevents her from thinking rationally. She was also given an anti-anxiety drug, Ativan, which gives her a bad reaction. Then, yesterday, she stopped responding at all and looked like she was trying to bite her tongue off. Some of the nursing staff thought she might be having a seizure, but it turned out to be a high CO2 concentration in her blood. She has had this before, and it usually clears up with the use of a BiPAP machine, and she was immediately placed on that. By this morning, she was talking a lot. Unfortunately, if you listened to more than four or five words, you would realize that they made no sense. She spent her day between this state and sleeping.<br />
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This afternoon, we were finally able to see her primary-care doctor instead of the on-call physician. She said that Angela's liver has really gone downhill and her heart has enlarged even more. She said that Angela may recover from this episode, but does not have a good long-term prognosis and as her liver fails, her mental status probably will very from good to bad.<br />
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I see two possible scenarios:<br />
1) Her liver is failing. There is really nothing that can prevent this; slowing it down is the best we can hope for, or<br />
2) Her BiPAP mask has not been fitting and worn properly, causing her to have less oxygen in her blood than she should have. This causes stress on her heart, which then enlarges, and on her liver.<br />
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If it is #1, there isn't much that can be done. If it is #2, we can make sure her equipment is working properly and hope that this will lessen the strain on her heart and liver, allowing some degree of healing. In either case, she is taking at the hospital, and will continue when she is released, a medicine, Lactulose, which removes the ammonia from her blood and gets it into the digestive tract for elimination.<br />
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I don't plan to update this blog daily but will post whenever there is any major change. Mike flies home Wednesday, but I plan to stay as long as necessary. Again, thank you each for your prayers.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com3tag:blogger.com,1999:blog-967427048247876348.post-26299013083111325042010-05-28T20:42:00.001-07:002010-05-28T22:32:51.939-07:00Little thingsNow 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.<br /><br />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.<br /><br />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.<br /><br />We continue to praise God for the health she has and to pray that she can continue in it and improve it over time.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-16544646693263520362010-05-23T20:50:00.000-07:002010-05-28T20:42:03.910-07:00To San Francisco and HomeFriday 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.<br /><br />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.<br /><br />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!!<br /><br />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.<br /><br />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.<br /><br />We thank God for keeping us safe in spite of the unexpected duration of our trip.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-81674311436006433922010-05-20T00:22:00.001-07:002010-05-20T00:29:23.907-07:00Home, at LastAngela 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.<br /><br />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. <br /><br />God continues to bless us with just what we need for the moment, and we are thankful.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-70025614135277602622010-05-17T22:24:00.000-07:002010-05-17T22:27:10.596-07:00Planning to go homeLooks 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.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-44889094426851768152010-05-16T14:17:00.000-07:002010-05-17T22:28:30.826-07:00A long hikeYesterday, 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.<br /><br />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.<br /><br />One of her doctors told us he's working on the sleep study, so I'm hopeful that something will be worked out.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-42505484345635686932010-05-14T17:45:00.000-07:002010-05-17T22:29:54.891-07:00Continued ImprovementToday, 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!<br /><br />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.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-43431321638032555962010-05-13T21:14:00.000-07:002010-05-13T21:17:23.295-07:00Walking outsideAngela 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.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com1tag:blogger.com,1999:blog-967427048247876348.post-83378830592253584952010-05-13T00:15:00.000-07:002010-05-13T00:18:31.827-07:00Slow, steady progressAngela'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.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0tag:blogger.com,1999:blog-967427048247876348.post-14722770311747320202010-05-12T01:40:00.000-07:002010-05-12T01:50:48.797-07:00More small stepsI 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. <br /><br />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.<br /><br />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.<br /><br />God continues to bless us, and we are grateful.Terri Toddhttp://www.blogger.com/profile/14237139059771102791noreply@blogger.com0