I'm delighted to hear that the dialysis and paracentesis have helped so much - and remember how frightened you were of both! Hopefully, everything will continue to look up from here. High dose steroids do suck! They cause all sorts of problems, but obviously sometimes they are necessary. Even people who don't have an illness requiring hospitalization under normal conditions have to be hospitalized for them because of needing monitoring for things like elevated blood sugar and blood counts. Don't get too fixated on those - although of course with leukemia and post-transplant those are the "benchmarks" we are accustomed to look at.
Re the O2 levels - has respiratory or PT done breathing exercises with Maria? I'm usually allowed to "play" with the O2 levels while treating a patient as long as I keep their SaO2 above a given level (usually 90). 95 and above is considered "normal", but I've even had patients I was TOLD not to give oxygen to unless it fell below 85. At MSK we got just as many orders for "chest PT" (percussion and vibration and breathing exercises) as for "rehab" (bed mobility, transfers, strengthening exercises, ambulation, etc.). Has anyone tried decreasing the O2? What happens? I'd try it without telling her (so she doesn't "panic") Does Maria have an incentive spirometer? She needs to use it religiously. Re: the sinuses - there are ways of opening them up. It depends on whether the lining is totally swollen or whether it's the openings that are blocked. If it's the former, then a short course of a steroid nasal inhaler (the ONLY time I had a sinus infection that worked in 2 days) should help. If it's the openings there are ways of mobilizing them, and then any fluid that's collected inside drains out. The nebulizer treatments don't really work on sinuses - they are designed to open up the lungs.
I'm sorry to hear you didn't get much sleep. You should have asked for something to help, because you should have realized that you were too wound up to be able to relax enough. Furbabies??? That's what I call my cats, but I can't imagine keeping cats in a hotel room for all the time you've been at the hospital!
You are right: probably only a parent in the same position can understand how you feel, but you really can't control everything. The medical staff are there to do that. A parent (no matter what the age of the child) feels that somehow the child's illness is their fault. I'm sure the thought, (no matter what the MDs say), that perhaps they passed on a gene or tendency to produce a gene defect caused the illness, or because they lived in an area that has some risk factor, or because maybe they brought home "something" from work, failed to notice a symptom much earlier or had done something themselves to "deserve" that their child became ill (yes, some people do think that way) has crossed many a parent's mind. We know that this is pure rot, but a parent has created the child (at least in part) and feels a responsibility for life. I've met many a devoted spouse, too. That doesn't mean that they felt they had to be with the patient 24/7: they went to work, they looked after the children AND spent time with the patient. That's a pretty tall order. Trust me, the staff knew that the spouses were fully involved in the patient care. Being there 24/7 - or feeling that you've got to do that - doesn't help. This is a long-haul thing. If I remember one of your earlier posts correctly, you did express that you didn't know how you were going to get on with your life after Maria is finally able to leave Houston (not just the hospital), because you'll be constantly worried about her. t's not good for you, because if anything goes wrong, you'll feel it's because you failed to notice something, say something, do something, and that WON'T BE TRUE. Yes, I do know that in the hospital if there's a family member there most of the time who is very involved in the patient's care, the patient gets better care, BUT if you totally subsume yourself in the process it's not very healthy. I've never been in your position, but I have seen lots of people who feel as you do from the other point of view - that of the healthcare worker. It's very hard to watch the family members who destroy themselves in the process of virtually standing in front of the patient's door with drawn sword. When things go well for the patient they feel it was all due to their vigilance, but if things don't go well they feel it's all their fault and that if only they had questioned something/done something/said something there would have been a different outcome. I don't see these people afterwards, but I can imagine that they have significant problems in going forward.
I have a question: how did they find that Maria was a late responder? I have AML, and they did the post-chemo BMB on Day 14, (that was at the beginning of June last year), but my marrow was unchanged from the pre-chemo BMB. However, a couple of weeks later, my counts started to go up. They never did another BMB until August (and that one was a 'failure', because the MD didn't get enough trabecular bone). The result was that I wasn't offered a second round of induction, and they were thinking I had had a "spontaneous" remission, but now both my MD and I think I had a delayed response.
Big hugs, (and please don't think I don't think you are an amazing person)
PLEASE be aware that the pictures here are not for the faint of heart!
So over the weekend Maria continued dialysis. She had yesterday off to see what her kidney level would do. Sunday morning her creatinine was down to 2.32. This morning her creatinine went up to 2.85. This doesn't really mean much yet. Including today, she has had a total of 4 dialysis treatments. They will do dialysis on her every other day this week and continue to assess her numbers. On Friday, she had the paracentisis done and they took 4 and a half liters of fluid out of her. When she gets dialysis, that also takes 2 or 3 liters off of her. As far as the water retention goes, she is a lot more comfortable now which is good. She remains infection and disease free which is also very good. Her oxygen has very much improved since getting some of this fluid off. Like today she hasn't had an oxygen mask on all day and she is stating 97/98 which is awesome. So these are good things.
The issues we are dealing with now, is of course the dialysis and kidney concerns. She has a lot of mouth and throat pain that they will culture but they think it is yeast and have given her things to help it.
And finally..and this is where the photos come in...she has a ton of little blisters all over her. They are blaming it on the gvhd of the skin. (graft vs host disease) She has had rash flare ups from the gvhd before but this is by far the worst. It's like a horrible sun burn. Her back has it pretty severe. The pictures that you are about to see actually look decent compared to what her back looks like now. The open wound you'll see is now the size of a hand, maybe a bit bigger. Of course this is very, very painful for her. So they have changed her bed out. They brought in a low airflow, wound surface bed that eases the pressure on the body. They also ordered something called Cool Magic. They are gel sheets that almost look like gel window clings and the gooey side has something in it that cools the stinging and burning sensations! They also will protect her skin from tearing any farther. So because she is having all of this pain she is on the Dilauded pain pump. She gets very loopy and out of it on the pump, and the only real reason that was a concern is because if I am off taking a shower or running errands and someone tells her something she won't remember it like 10 minutes later and thats only a concern because she needs to be able to make decisions for herself and understand them if I am not here. I usually stay until all the Dr.s have made their rounds, but there has been times where someone or another comes by at 3 something and up to even 5 something oclock and so I simply am not ALWAYS there. But for now I will probably try to not leave for showers and stuff until at least after 3. So thats where we are at. Maria is in very good spirits though. I think her family having had visited this weekend made a big difference. And as always, I will do my best to keep you all posted.
The above posted I copied right from her blog. What you arent seeing is the pictures unless you visit there. What the blog doesnt say is that today Maria was sitting up in a chair for 2 hours and when she went to move back to the bed, she couldn't get up because the chair was too low. It took 5 nurses and a gait belt to get her into bed, and because her skin was torn and blistered, the gait belt tore her skin open bad. Like the one picture shows an open sore on her back, but it is now triple that size. When the nurses went to lift her legs into the bed they didn't pay attention to her foley and it got pulled out. The pain she has endured today has just...I think the poor thing handled it better than I did. I am so angry and frustrated and its a long story and I am exhausted today! I just want to take this all form her and put it on me instead.
I am SO tired of nursing assistants/nurses not being able to transfer patients! #1: they should NEVER have used a gait belt. In order for them to work, they have to be made really tight and there is almost always some movement which leads to chafing (and worse) on sensitive skin. #2: ALWAYS put a cushion on the chair of weak (or tall) patients EXACTLY to facilitate the transfer back to bed. One thing that's better these days in nursing homes at least, is that they make beds that go really low, so it's easier to transfer the patients back in. (It's easier to go from a higher surface to a lower surface.) #3: I have never needed more than 2 other people (and that was with a man who was really huge and had a lot of lines attached to him, so I needed one person to keep the lines from being compromised and another to help guide the patient and with a less than 5 ft-tall woman who weighed over 300 lbs and had both knees replaced! You get the picture. It's all about technique and training and experience. #3: the foley should never have been pulled out. What to do with the foley is all part of the preparation. Sorry to be sounding off, but that sort of stuff makes me really, really mad!
I'm so sorry Maria has had to go through all that. Since she's likely to be very nervous about getting out of bed again, here are some suggestions: 1) get PT to give her/order (if none available) a 4" cushion, or 2) if one is not available ask them to get Maria a hip chair - those are chairs that are used for people who have had hip replacement surgery and therefore have some prohibited movements, so they need to sit in chairs that are high. The ortho unit should have some.OR 3) see if they have those big recliner chairs - those should be higher. If Maria has excoriations on her butt, get PT to order a gel cushion. There are a number on the market . At MSKCC we had a "standard" gel cushion for patients with excoriations and then could add different inserts (into the middle) for patients with different degrees of skin breakdown.
I am SO happy that I made Maria's blog!! Dermatology came in today to look at Marias rash and her blisters. They swabbed one of the opened blisters to culture it and they are going to take a skin biopsy shortly. They talked GVHD and I KNOW she has some GVHD of the skin..but they didn't seem to think the severity of her rash was all GVHD! So when they left the room it dawned on me...the blog! She has this rash EVERY TIME she comes into the hospital! So I went back to June and July and I had tons of pictures of her body rash! I took my laptop out there and showed them all the blog and they were super impressed with it. They said it was really helpful because the rash back then looks the same as now only worse and that rash was months before her transplant. So they are thinking that she is having a reaction to a medication. I hope that this is the case because her skin is the WORSE its ever been and she has had some bad rashes! They think the blisters are from her water retention and the draining of her fluid and NOT from GVHD which makes me a very happy girl. I know how bad GVHD of the skin can get! So I am super excited that the blog was able to be so helpful! I would recommend EVERYONE at the very least make a private blog and post pictures of everything and document as much as possible! It might come in handy later although God willing it won't be needed!
Her levels have gotten better now that the steroid pulse is over. Her oxygen since they took some fluid off of her has improved greatly! Yesterday and today she hasn't worn any oxygen at all and she is stating 97%!!! I am so happy. She hasn't been doing much breathing exercises but she does get breathing treatments from respitory. When they would decrease it before, she would fall below 93..usually it would go 87-93 and they won't allow it to be lower than that. Maria was considered a late early responder because by day 14 she had more than 5% blasts in her marrow and by day like 20 something she had 0 blasts but was still MRD +. It took about 35 days or so to get her in complete remission. The only reason we got 3 bmbs in under 2 months was because she was hospitalized for a DVT and...geeze...I don't remember what else. I know you are an educated person and are trying to just be logical with me...I don't take any offense to what you or anyone else says. I might get annoyed at times...but never offended and I shake it off quick. Everyone has their own beliefs, views, opinions.
Thats a good idea thank you! She is doing ok with the sheet on her. We do need to get her to lay on her side thought and take the pressure off her back as that is where the most damage is. And while it is a rough time...God willing it will all pay off in the long run you know?
I will suggest the cushions to them and thank you for the idea. She will be very nervous to get up at all now. And I was so mad that they had to use the gait belt. The actual nurse of hers didn't want to and tried so hard not to, but when it's 4 against one I guess she felt like there was no other option. It sucked... and the foley getting pulled out pissed me off the most because that was just form them not paying enough attention!
You have every right to be mad about the foley. Touch wood: I've never pulled one out (at least not so far - and it's been 25 years!) They didn't have to use a gait belt: they should have got a sheet under her butt (like a sling). I never do use gait belts. If someone is wearing pants, I'll hold the waistband - otherwise there are other methods of guarding a patient. When it's a matter of assisting someone to stand, under some circumstances I'll use either a sheet tied around the body or take a hospital gown, wind it up and tie that around the patient. Neither is as hard on the skin.
If they can't find a cushion they can also put 2 pillows on the chair and then a pad over that. In fact, it could be prepped with a sheet folded the long way and placed across the pillows and then the pad, so if they need help in getting Maria up the sheet is already in place.
If I had remembered your earlier posts about Maria's skin rash from pre-transplant hospitalizations, the idea of a medication reaction would have occurred to me. The first time I was hospitalized with pneumonia (nothing to do with leukemia), I got a total body rash from the antibiotic. The itch was horrible, and it took them 2 days after I complained to figure out the cause. I admit it didn't look as bad as Maria's, but then it hadn't been going on as long either. I hope they can figure out which medication Maria's on that's causing the rash.
Re: the blisters - yeah, excess water can cause pocket of fluid to form under the skin. It's not so common in young people, but I've seen it in the elderly quite a bit. I think it's more common in the elderly because their skin can become quite thin - what's termed "friable", and I've seen people whose skin is so bad I can't find a spot to hold them so I can help them get out of bed or whatever. It should get better now that they've taken so much fluid off of Maria.
I'm sooo happy to hear that her sats are so much better! That's one big relief. She still needs to do breathing exercises, though. They help to strengthen the diaphragm and the accessory respiratory muscles and help get rid of excess secretions. I'm amazed that at MDA they don't have someone coming around and teaching her breathing exercises. What about regular PT? They should be coming around every day as well.
Glad to hear things are going better in general.
PT is coming 5 days a week. They don't work on the weekends here! They come the first day a person is admitted and give the breathing spirometer and an acapella thingy and tell you what to do. Then they just leave it to you to do it which doesn't work for her. She feels bombarded and thats the last thing she thinks about doing. Her creatinine is 2.20 today. Today she has off from dialysis. They are going to start her back on Lasix today to see how she responds and look at the kidney number again tomorrow. She is also going to be started on steroids after all. Her rash is actually starting to look a lot better but I guess he still thinks they are needed. The only reason I am worried is because of the potential weight gain, muscle weakness and risk for infections. But it is what it is and maybe thats the answer. We are kind of at a standstill...waiting to see what Maria's body is going to decide it wants to do! And I just realized you're one of the only few commenting...hope I didn't offend people in prior posts...when I get in a mood I just say what I think and feel..sorry.
At MSK we only did post-ops & patients on a special post-op pulmonary program (it includes a lot of exercise/ambulation), people who were getting chest PT and ortho pts on weekends because of limited staff availability. Transplant pts are seen every weekday if they need PT.
I'm curious: do they have music therapy coming around? A friend of mine is a MT in the transplant unit at MSK.
I have no idea what you mean by the "acapella thingy". What does it do??
Sorry Maria's creatinine went up again. I do notice you are calmer about things now. I hope things "calm down" soon.
Ok...what a day! So I was getting a lot of different things said and got overwhelmed and asked for patient advocacy to help me out so she set up a meeting that included me, her, and the APN who has been on Maria's case and knows the whole picture...
Marias skin biopsy shows that she has grade 4 GVHD. Thats the worst even thought others with the same have had worse sores than her. So they started her on steroids yesterday, cut the dose in half today. Her skin barely started healing I noticed right before that. The APN says they are more concerned about the GVHD than her kidneys at this point which shocked me and he said the reason why is because of treating it with steroids and the side effects steroids have which muscle weakness, retention, but more so being immunesuppressed and at risk for infection. He said they are talking, and at this point it's just talk, about trying photophersis on her. He said it's been very successful and is actually safer than the steroids which again shocked me. They will discuss it more seriously next week and re-evaluate her skin.
Then, the renal fellow came in this morning and said that although she produced more urine with the Lasix, it wasn't what they wanted to see. He said at a minimum, they needed to see her output be 720cc and she's maybe hitting 3-400. She had dialysis today, they took 2 liters off her. This weekend she will not have dialysis at all and they are going to hit her with a higher dose of IV Lasix and see what the response is. She said that come Monday, they are thinking they want to put a different cathether in. So when I talked to patient advocacy and the APN I asked why they were thinking that way and what does this mean and he said they still believe her kidneys will recover, but that after a week of treatments they feel that her kidneys need a longer time to recover and for that they usually use the different catheter. I asked if it was totally neccisary at this time medically...to change the catheter and he said no. I told him that literally one week ago today she got her catheter and PICC line put in after 4 days of NPO no NPO and rescheduling and it was tramatic for her, plus with her skin, she needs some time to recover and heal and I want to give her kidneys another solid week and see what they do. He said that would be fine.
I asked him to tell me about how much longer he thought she would be in here ( I KNOW she's not ready!) and he said what I expected which was up to a month.
I feel much more calm now to have been able to ask one person all the questions I had and to get the answers. I feel like I have a better understanding of where we are at and what we are tackling.
Marias friend was here and sat with her during dialysis so I could deal with all of this and apparently the dialysis nurse said something about looking into hospice care for support and assistance. I about passed out when I heard because I'm like who's not telling me what. Well, apparently hospice here, is also supportive care which helps patients who are not terminal. I specifically asked the APN if there were any talk or thoughts that Maria was dying and he said absolutely not. She's not terminal or end stage or anything...she's sick and it's a delicate situation...of course something can go wrong, but no! Talk about emotions!
Patient advocacy sent the social worker up here to talk to me and he actually TALKED to me and didn't try to just push lists and numbers down my throat like s.w.'s pass. I cried a lot and cried hard and got a lot out and feel so much better. He said he wants to keep following up with me and to help keep me strong for Maria. I didn't even know that was a possibility here.
Knowing that Maria has a long road ahead, I have talked to two sets of friends and her family and finally told them I am going to very much need help. I am getting to a bad place mentally and emotionally and I need to be able to rest and know someone is there with Maria so she feels secure and they have agreed to come sometimes on the weekends. So that's where we are at. Kidneys and grade 4 skin GVHD! I still feel confident that Maria is going to live a long life...I just feel so much worry about the quality of her life with all of these complications.
One minute at a time...