Saturday, December 17, 2011
I came back to Silver City last night because there are a few things I have to take care of here. I'm going back to Las Cruces early tomorrow morning. Yesterday they took one of the chest tubes out of her and she still has one in. Hopefully it will come out today or tomorrow. She is making some progress and was moving around in the room in ICU a little better. Her breathing is not as shallow either which is a good thing. Pain is a little better controlled now. Her doctor told us yesterday morning that once the other tube comes out they will watch her for another day after that then hopefully she can come home. But yesterday afternoon the nurse said they got the culture results of the pus they took out of her lung area and it is a strain that is extremely resistant to even the strongest antibiotics. They said this should not affect her so much because they cleaned it all out but she could be a carrier of this. They have been giving her very strong antibiotics with an IV since the surgery (actually since before surgery since she first went into the hospital last Saturday). But I'm not sure if it's the same antibiotic. She has to continue for about a week on the iv so they are not sure if that will affect her discharge date. She had the surgery late Tuesday and so Monday should be 7 days so maybe it won't affect it much. They will also send her home with oral antibiotics but the first week or something has to be the IV antibiotics. We didn't get to talk to the doctor after that so we don't know for sure. But they now have her on precautions to prevent carrying the bacteria out of her room so anyone going into her room has to put on a gown.
Other than that things are looking better.
After I got home last night I saw the local paper and saw that one of my case management clients died on Thursday which made me very sad. This was a 44 year old woman with Down's Syndrome that had been in the hospital most of the past month. She was also in Las Cruces but in a different hospital. I talked to her sister a week ago, who was taking care of her since their parents died a few years ago and drs weren't sure then whether she would make it or not. She had severe mental disabilities due to the Down's Syndrome and was like a little child. Some Down's kids are higher functioning but she wasn't. She was so sweet though and I really liked her a lot. She had a seizure disorder also. She was very prone to pneumonia because of some lung issues, and in early November had to go into the hospital because of that and was in there almost 2 weeks. She went home a day or two before Thanksgiving but was back in the hospital a few days later here, then flown to Las Cruces. The problem was that the medication to control her seizures was playing havoc with her white blood cell and platelet counts. They tried changing the seizure medication but none were working and she started having severe seizures about every hour, which is what caused her second hospital admission. She went into a coma and was in a coma when I talked to her sister about a week ago. If she got the medication to control the seizures it caused other problems and if she didn't the seizures played havoc with her system. It was just so sad. I wasn't really surprised to see the death notice in the paper but had been hoping she'd pull through. One of the things about working with elderly and disabled is that I lose a lot of my patients. In the past 2 or 3 weeks I've lost 5 for one reason or another like effects of severe alzheimer's, heart disease, etc which is hard but this woman in her 40's is just extra sad to me. Her sister had told me though that even though Rita was in a coma the nurses say she could still here and her sister wanted her to stay but was giving her permission to go also and told her that if she saw their parents it was okay to go to them and be with them. So now she's with them and peaceful now I believe. Her sister has a strong faith in Jesus and although I didn't know the parents I understand they did too.
Okay, enough talking of sad things. Today I have a lot to do before I go back to Las Cruces but also want to get some real exercise in today. I've done a lot of walking this week, although in short increments but am hoping to get some real cardio in. I'd like to go for a run but am not sure yet because weather is very overcast and I still have some chest congestion from a cold I had so I'll see how I feel. And even though I may not get to the gym today I want to get my weights and exercise bands out here and do some strength training which has been missing the past 2 weeks. I've been on the go so much with a trip to Albuquerque for training 2 weeks ago on Thursday through Saturday, then again back to Albuquerque last Friday and Saturday, being sick, and then Steph's hospitalization since last Saturday. So my walks have been several of 10 to 15 minutes at a time this week.
Hope everyone has a great day today. Again, I so appreciate all the support this week I've had from my friends online. It has really made a huge difference to me when I'm away from home and watching my daughter go through all she's gone through. I could get online when feeling down and read comments, encouragements, notes with goodies, comments on friend feed and all the support. I could also read about others that have joys to share or their own personal problems and put things in perspective. The SP community has just been so important to me this week and still is. Continued prayers and thoughts appreciated on her road to recovery which will take a while even when she gets out of the hospital.
GRAPHIC PIC below
Below is a picture of her incision . Warning you so you don't have to look if you don't want to. The procedure is called a thoracotomy for those of you who are nurses or others with medical knowledge. The nurses, doctor, and anesthesiologist were all surprised that she had to have this done at only 28 years old because most often it is something that has to be done in much older patients with a lifetime of heavy smoking or other major health issues to their lungs. Not sure what set all of this off in her case. Pneumonia with a bacterial infection in a strange location in lungs and some scar tissue from something, maybe the infection I don't know, that caused part of lung or outer lining to be sticking to another part. Not totally clear on that but it had something to do with scar tissue causing something to stick to something.
This is a picture of my baby girl right after the surgery when hooked up to the resperator and all kinds of things. She looks better than that now and has a few less things hooked up to her
This is the picture of her incision I took yesterday after they took the dressing off. Under the bandage below the incision is still where one drainage tube goes into her lung. The incision goes from a little below armpit on left side around towards spine.
Friday, December 16, 2011
I'm getting ready to go back up to the hospital in a few minutes this morning. Steph is making slow but steady improvement. The nurse was hopeful that maybe the dr would take out the chest drainage tubes today since there is not much coming out anymore. That would help a lot. Yesterday they changed the dressing while I was there and I saw the incision. She has a 23 cm (over 9.1 inches) long with 6 stitches and 23 staples in it. Plus the other 2 little holes where the drainage tubes go in below the actual incision. They had her on jello and broth day before yesterday and yesterday morning. She kept asking for real food. The nurse talked to the dr and at first he was hesitant because she wasn't eating the broth but the nurse pointed out that the broth is not appealing at all. She would eat the jello. He finally agreed and for lunch she was able to have a regular diet and she ate half a turkey sandwich and some pudding and a few french fries which she had been craving. Dinner she ate a lot. Hopefully getting real food in her will also help her regain her strength. They took the bladder catheter out early yesterday morning. Every tube that comes out makes it just a little more comfortable.
I'm doing okay but I really have to go back to Silver City this evening and I really don't want to go. But I need to go help a little with her kids, get more clean clothes, and a few other things. I'll probably come back here on Sunday unless something changes. I hate so bad to leave her and I know she's going to hate for me to go but I'll see how she's doing today. It's hard to be torn between her needs and needs at home. There was some drama going on between my other daughter and her husband this week too. Nothing new about that. But it adds to the stress because she has Steph's 2 older kids.
I just want so much for things to get back to normal. I haven't even done much Christmas shopping yet and it's coming so fast. It just doesn't feel like it. But I'll get it done. Right now I'm at the hospital all day, come back to the room about 6:30 or 7, and fall asleep watching tv in an hour or two because it's so exhausting to be at the hospital. I see progress but I also see so much pain and we all know how hard it is to see loved ones in pain, especially your kids even when they are 28 years old.
Thanks again so much for all your support, prayers, comments, etc. I appreciate it so very much!
Thursday, December 15, 2011
Yesterday was hard but no real complications. Just watching her in pain. She was supposed to be kept sedated and intubated yesterday and possibly remove intubation today and get her to breathe on her own. But she has a high tolerance for pain meds and woke up from the sedation early yesterday morning, before I got there, and pulled the breathing tube out herself. The drs left it out but we have to keep working with her to breathe deeply enough to make sure she's getting enough oxygen into lungs. Of course she's on oxygen also. Drs warned this is a very painful surgery no matter what they do, and she was in a lot of pain yesterday even with pain meds. She is a sweet girl much of the time but when in pain another side definitely comes out, which I've seen before. But dealing with it at times yesterday was hard. Then she'd get more pain meds and be better for an hour or two and then they would start to wear off again and the cycle would repeat itself. She also was not happy that she can't have real food yet, because she wants some fries. Try to explain to her that anesthesiolog and effects of major surgery throw off the digestive system and they have to start with clear liquids and jello. Explaination did not help a lot. She reminds me a lot of dealing with my mom at the moment when my mom was sick or in severe pain. I do understand but it is still hard. But we got through yesterday and I came back to the motel room and got some sleep last night. Part of me hated to leave her and part of me just wanted to run out of there as fast as I can LOL. I am not the best at taking care of sick people for long even though I have done it a lot. But I do feel so bad for her and just want her to be better and life to get back to "normal" again. I'm getting ready to go up there today in just a little bit. It's almost 6:30 am and I'm drinking coffee and enjoying a little bit more rest time before I go back to sit with her and help. They did get her up into a chair for a couple of hours to help her lungs work. She has tubes out of her chest, a catheter, tubes that go to the things they have on her legs (I forget what the are called) but the inflate some and make sure the blood is being forced to circulate after surgery until she can start walking a little to prevent blood clots. She has a catheter in her bladder, oxygen tubing, and then of course monitors hooked up to her. Such a tangle of tubes and wires!
Yesterday I found out the surgeon who operated was actually off this week but agreed to take her because it was an emergency. He told me he was leaving about noon yesterday and who was covering for him. He has a partner who handles more of the medical side while he handles the surgery and I've met and spoke with his partner several times in the past few days and like him. He was the one who did all the work up before surgery. So I still feel she is in very capable hands but I do so appreciate Dr Khan for doing this even when he was scheduled to be on vacation.
Well time to finish getting ready. Again I so appreciate all the support from you guys. Keep her (and me) in your thoughts and prayers still.
Tuesday, December 13, 2011
I posted a blog a couple of days ago about my daughter's admission to the hospital in our town with pneumonia. She was on a heavy duty IV antiobotic but not getting better and the doctor had the lung specialist take a look at her yesterday. Late yesterday they talked to a thoracic surgeon in Las Cruces (bigger place 2 hours away) who thought she needed a lung surgery that couldn't be done at our hospital. So late yesterday they decided to transfer her down to Las Cruces early today. She left by ambulance at 7 this morning and I followed down just a little later after I helped my other daughter get all the kids off to school. They did another x ray, another CT scan, and an ultrasound and decided she definitely needed surgery. There was puss and fluid between the lining around the outside of the lung and the lung wall. There was a big pocket with several smaller pockets inside that made it impossible to just put a tube in to drain it. It required major surgery late this afternoon to go in and clean it all out. She got out of surgery about 5 this afternoon and it was about 5:30 when I got to see her. She is in the intensive care unit. The doctor told us before the surgery that they would need to have her on a ventilator for a day or two after the surgery because it is a major surgery of the lungs and also creates a lot of pain that might make it hard for her to breathe right afterward, even with pain meds. After the surgery the doctor said it would probably be Tuesday before they take her off the machine breathing for her and that she will probably be in the hospital here for 6 or 7 days. He said he hoped maybe next Monday she could go home (today is Tuesday). Until they are ready to take the tube out they are keeping her sedated to keep her from fighting it. Surgery went well but these are the usual things after this kind of surgery. She also has age going for her since she's only 28. The anesthesiologist said that they do a lot of these types of surgery but usually on people at least 50 or older who have been heavy smokers all their lives and have a lot of other health complications when they do the surgery. So a full recovery is expected. However it is still so scary to see your baby, no matter how old they are (she's actually my next to youngest but they are all still my babies when things happen) having a machine breathing for them and knowing that they expect it will be a week before she can be discharged. In this day when they rush you out of the hospital quickly that seems like such a long time when there aren't additional complications.
I'm at a motel room now because I know I need my rest to be there for her tomorrow when they will be doing more tests and doctors will be checking on her. It's almost 8 pm right now. I feel guilty leaving her but there's nothing I can do for her tonight (except of course pray) and during the years when my mom was alive and had several hospitalizations I learned that I need to take care of myself if I am going to take care of my loved ones. Tomorrow I will be up at the hospital early and camped out all day so I can be there when doctors check in so I can stay updated on what's going on. At least I know I am only about 3 miles away from the hospital if something happened, instead of 2 hours away at home. I could not just leave her here although that puts a lot of burden on my other daughter to take care of Steph's 9 and 11 year old along with her own 3 kids. The 4 year old is with her other grandma but that grandma is not the grandma of the older 2. Fathers of the kids are not in the picture. So anyway we've got it covered and my older daughter Kathy understands and her husband also. I can't stay here until next Monday though so I will have to go back and forth some but for the next couple of days for sure I will be here and see where we go from there.
It's been an exhausting day and very tired. While in the waiting room while she was in surgery I wished I had internet access so I could get online and have connection with my friends here. You all really do mean so much to me although most of you I've never met face to face. I got a lot of comments on my friend feed this morning about my daughter being transferred down here and goodies and thoughts and wishes for me and my daughter. It really means so much to me. Although I've talked on the phone or texted back and forth with my other kids (I have 5 grown kids altogether) I still felt very alone there. I don't remember feeling that way when going through surgeries or other things with my mom but this was different. I am used to be alone and doing things by myself and usually am fine with it. Today it just got to me more. Thank God for cell phones and internet and the modern marvels we have today to be in contact with others.
Well I'm going to get some rest and watch the season finale of the Biggest Loser, if I stay awake that long. Thank you everyone for your wonderful comments, goodies, thoughts, virtual hugs, and prayers.
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