Tuesday, July 15, 2014
I'm sorry that I haven't been around, but I have been through everything and I have a lot more to go through...
I did go to rehab and after I had been there for about eight days, I convinced the doctor to let me work with my pain doc. My pain doc agreed that I couldn't do anything without my pain being controlled so he added a fentanyl patch back to my regime. Then at about ten days, my favorite and most pushy physical therapist said to me, "I think you're ready." I looked at her and said, "Ready for what?" She said, "To stand up." I was shocked since I hadn't been able to bear weight at all and my legs simply weren't working--but I said to her that, "I'm nervous, but I want this and I will give it my best," She wheeled me to the parallel bars and counted to three. At that point, she pulled on the gait belt and pulled me to my feet. Once I was up, she said, "You know what is next?" I answered, "To walk?" and she agreed. I walked back and forth the length of the parallel bars three times and then sat down and cried for 20 minutes. I couldn't believe that I was able to do that. The next day, she said that we would use the walker and we did. The problem was that I couldn't get myself up. We worked and worked on it.
In the meantime, the hospital had run a UA on me when I first came and found that I had a UTI. They started me on an antibiotic called Levaquin. I took it for seven days and on the eighth day, I broke out in a bright red measles looking rash on my face, my privates and my behind. It turned into a flaming red color and total rash over the same area and for the next four days, it covered my entire body. The rehab doctor gave me benadryl for two days and the nurses begged him to do something else so he put me on steroids and gave me hydrocortisone cream. On Saturday, I saw a different doctor who took one look at me and said, "This is dangerous." He got the disease control doctor to examine me and they determined that I needed specialized care, so they put me in an ambulance and sent me for that 75 minute ride back to University Hospital. They took me to the ER and it seemed like 50 people had to come in and check me out. I was burning everywhere.
They took a biopsy off of the back of my arm and the dermatologists admitted me to the floor adjacent to the burn unit. The burn unit staff along with wonderful staff on the floor I was on worked hard to manage my pain from these burns and to treat everything. I was put on a regime of creams and bandaging to try and control the blisters and to actually speed this mess along. My heart rate stayed extremely elevated and they finally put me on meds for that. Taking my blood pressure was torture because of all of the burns and blisters that covered my arms. The same problem came up for drawing blood or placing an IV, I was a mess. It was pretty awful--and all I could think about was physical therapy and my legs needing to be exercised and worked. I got to see the PT for 30 minutes each day and the OT for 30 minutes, but the rest of my time was in bed. It was a long and horrible time, but after 6 days, I was down to bandages on my arms and hands and my legs and feet--so the hospital wanted to send me back to rehab. I tried to convince them that I had met my long term goals from rehab--I had the documents and the therapists agreed with me, but they came back and told me that the rehab folks told them I needed two more days there.
I got them to let me ride with my husband rather than in an ambulance (for the third time, oh my) and we had a lovely ride back to rehab. When we got there, they had a room for me--but the nurse who was assigned to me took a look at my dressings and said, "I'm not changing those." I was shocked--I had worked with her a couple of times and she had never been so nasty. I looked at her and said that I needed them changed because I needed creams/ medications applied. Then she brought me some cold left over dinner tray that had a baked potato, a muffin, cottage cheese, and hot cocoa on it. Oh yes, and some weird cold broth. I told her that I surely wasn't eating that and that she could take it back.
I waited for another 3 1/2 hours before anyone else came into my room--except two of my kids because I texted my family and told them what was going on. (I had sent my husband home because our youngest, autisic son was having problems and needed a parent. I needed him to do that more than to monitor me--or so I thought.) One of my kids brought me a nice chicken dinner and another brought a pizza. :) I needed to go to the restroom and couldn't use the facility in the room because it needed a riser--my son went and pushed them to bring me a commode which was the only thing that was really done for me. Anyway, finally that nurse came into the room with information to "put me in the loop." The packet of papers I brought from the hospital was unacceptable to them because there weren't any "doctor's orders." They called University Hospital and said that I hadn't really been discharged, so she gave them an ultimatum. If they hadn't sent doctor's orders for me within 15 minutes, she was putting me in an ambulance and sending me back to them. She said that the doctor who had been seeing me all along had refused me as a patient. I got pissed off and told her that she was not putting me into an ambulance and that I was going home. I swear her eyes sparkled when I said that and she asked me to wait a few minutes. 20 minutes later, she came back and said that University Hospital had discharged me to go home. She said that my meds would be called into my pharmacy in the morning. When I questioned her about physical therapy, her answer to me was to "call any of them up and they will just take you." I was totally shocked, because I knew that wasn't true. However, my kids helped repack the box of creams and bandages that had been sent with me and I figured that I had enough meds to get me through the night and they helped me to get back into our car with my burning. swollen feet.
It seemed like a miraculous and very long ride home for that 20 minutes. It was terribly hard to get into my house because my feet were on fire and I hadn't had any meds since about 2:00 and it was almost 9 hours later. My sons and husband were so wonderful with me and they got me into the house someway. I hadn't climbed stairs at all and we have two to get into the house. Besides the burning and swelling in my feet, I couldn't lift my feet to get up the stairs. I was exhausted on top of everything. My husband and one of my sons guided my walker and another of my sons helped to move and lift my feet and they got me inside and to my power chair. They went to work on my bandages as soon as i took some pain meds and my other meds. They finished with all of them at about 12:30 AM. I slept well, believe it or not and we called the pharmacy as soon as they opened. Of course no meds had been called in for me.
I called my PCP and he got me in during his lunch. He was leaving after lunch to go on a week long family vacation. It took him an hour and a half to muddle through the paperwork I had and order meds, get me an appointment with the other rehab doc--the one who sent me to University Hospital, get me a visiting nurse to care for my wounds, get me an appointment with my pain doc, and to order and get me started in physical therapy. They did some blood work as well. I was so glad that I went to someone who knew me. I went home and started working on the exercises I knew to do. It was a hard time__I'd sleep a while and then need bandages changed. The blisters were breaking and my feet were leaving puddles all around me. My family worked hard to care for me. When the nurse came, he was impressed with how well they were caring for the mess I was in.
I got to get rid of the bandages off of my hands about 6 days ago. My feet are coming along--the doctors in Iowa City thought that my feet and legs would be through with all of the blistering and peeling by the end of this week. I started back to therapy last week. It is hard for them because the big bulky bandages on my sore feet are hard to work with-the only shoes I can wear are my son's size 12 athletic slides. I am still having some trouble pulling myself to my feet. My upper legs are very weak and aren't doing their job yet--we are working on strengthening and endurance. I cannot pull my feet into the car yet. I have learned how to get up our stairs. I am really trying to get myself back on my feet. Apparently it is the L2 vertebrae that controls the part of my legs that aren't working yet and that is where all of the trouble in my last surgery was at.
I believe I will be walking without my walker at some point. I also believe that I will overcome all of this mess. I don't know when I will have time for SP like I used to. I have made a lot of decisions about my life after these life changing issues I have dealt with. Each of you who have read and supported me here are important to me and I have thought about you--Linda and Pat and Morticia and Ferret Lover (I'm sorry, your name has gotten by me right now) and my OA of the Lower Back group. I just haven't been able to do much about it except think about you. I have had over 900 emails to deal with and all that is important to me is to work towards getting my life back in order. My family has been wonderful, but things around here aren't the way I like them. Lots have been going on with most of my kids plus there is a wedding we are going full steam ahead with. I will be dancing with my son on September 20.
So, I will say that my absence has been beyond my control and that I am sorry for leaving you all for so long. I am not sure when I will be a true spark person again. My weight fell greatly and then when all of that swelling came, it went up like crazy. My legs are still slightly swollen and my poor feet are not good yet. I will get better. I will get my life back. I have applied for a job in a different school--if I get it, I will be giving three years notice of retirement. If I don't get it, I am going to retire this year. Life is too short to be taking all of the garbage that I have been taking from the principal I work with. I will be starting a reading program for the inner city kids who live around our church for next year--and I sure hope that I have gotten the job as literacy coach in that building so I will know kids and names to make that program the easiest and best that our church can offer children in need. (I don't know if I mentioned that our district plans to eliminate reading teachers at the end of this year--don't even ask me how they can justify that but I know that the reason is $$$ as always. That is another reason I am making a change.)
This is long enough--I should be sleeping now, but I am not ready for whatever reason. I have to go to the hospital with my husband for a 7:45 appointment for a joint replacement class he is taking before his knee replacement on August 4. That is one more reason I have to get better! Life is a busy place and things can be complicated.
I can do this--again, I have missed you all!!
PS: Would someone update the teams for me--OA of the Lower Back and Basset Hound Dogs? I really appreciate your support!
Friday, June 06, 2014
I rattled some cages today and am going to get things my way to the best of my ability. The reality in my world right now is that I have a full incision down my back. There are no signs that anything else is damaged or non-functional from all of the tests I had. My legs don't work right now. I can wiggle my toes and ankles on both feet and have some movement in my right knee. I am getting a bit of sensation in my legs. My knees on up to my waist have no feeling. This is scary stuff.
I told the nursing and PT staff that there were so many people giving me information and that so much of it didn't match that I wanted my spine team to visit with me and straighten things out. I called my PCP and my pain doc from home and let them know what I knew and the ideas of sending me to rehab when I cannot stand or take a step or get from the bed t a chair without being hoisted like an old Chevy truck engine through the air. I learned that there are a couple of resources at home, but they wanted me in the hospital, here or there. My pain doc said the fact that I am getting some sensation in my legs is significant because it should come first and walking is probably going to happen but there is no predicting when it will happen.
My entire spine team came and spent a good deal of time with me. My condition is tricky but they are optimistic and explained the CT scans, x-rays, and MRIs and how they have come to this conclusion. They took the vacuum pad off of my incision. as well and my incision is looking good and free of problems (and stapled from end to end.)
I no longer have 3 working IVs and I am now on oral medications rather than morphine. I had the catheter removed and my bladder has worked. My local hospital where all of my docs work has an acceptable rehab unit and if the insurance approves things, I will end up there, probably on Monday. They will have to figure out transportation and I have told them I don't want an ambulance for an hour and a quarter ride because it will be too painful on my incision.
My mood is rough and I'm crying a lot. I didn't sign up for this and have no idea how this all will play out. The people in charge now know that I am a player though--and finding my voice has helped me a lot.
Thursday, June 05, 2014
My story gets more and more confusing. I had surgery at 1 PM on Tuesday. I was sitting up, as promised by the anesthesiologist when I went to sleep and didn't have to face the nasty spasms and pain in my right leg. I woke up in confusion at 5:30 in Recovery. That was a big room with about 25 stations and full of color and activity. There were several people around me and the conversation about my legs not moving. They were numb, but I thought that was from surgery--and I was lying flat on my back without problems. I kept asking people about my legs, but nobody was telling me anything. They went and got Floyd and he showed me a bag with bolts and other stuff they removed from my back. He told me about the large nerve shoot that was strangled in my back by bone spurs and scar tissue. They found a place where the allograf had shifted, so they fixed it too. Much of the first surgery was fusing, so they removed several bolts and the upper hook so I'd have more mobility in my back. Things were going well until the monitor indicated that my legs were not moving. That put an end to the surgical work.
They ordered the CT mylogram and a spine CT right after the surgery. There was no fun in being transported so many times from table to table and my friends, I behaved badly with lots of crying and begging, They did the mylogram with me on my side instead of on my tummy like they wanted. Having that injection wasn't fun.
This morning I was able to get my right foot to move and an hour or so later, I got my left foot to move. That has worked a bit all day. As of now, I can move my knees if I am sitting up and I can move my right leg to my knee when I am lying down, I can move my left foot and ankle. I believe I will be able to move my legs and maybe even walk by sometime tomorrow. I might have gotten further today, but my blood pressure stayed really low and I also needed a transfusion before I had to go have an awful, awful MRI of my spine. I cried throughout the entire test. The table was so hard and I had to lie on my large incision for over 20 solid minutes, I was a mess and have been doing some comfort eating.
Tomorrow, I hope to get the results from these tests. I pray my legs will work so they can remove the catheter. The steroids are making it burn. At least I didn't have to wake up with the tube in my throat and in ICU.
Quite honestly, I don't know what is next. I'm guessing I'll be here for a bit longer as these unknowns get answered. I'm so grateful for the prayers and warm thoughts being sent my way. I am feeling them amidst this confusion.
Tuesday, June 03, 2014
I'm a bit stressed today. Within 1-2 hours, I will be taken to the OR. I've been promised that they won't make me lie down and aggravate the awful leg pain I am having. They will put pillows behine me, set up the anesthesia, give me oxygen and put me asleep sitting up. Then, they will lie me down before positioning me on my tummy for my second major and intensive surgery since April 17. I was totally good about my previous surgery--actually all of them. However, now that it has been confirmed that I am going to ICU, I am a mess.
Women have some special issues when they are lying on their stomach during surgery. Our faces, mouths, tongues swell up and the way they keep us breathing is by the breathing tube. That is not a bit of fun and my last experience with it is way too raw for me to be doing this again.
My doctor orders a specialized EEG where they use specialized paste to attach a bar to both ankles and add in the kind of little shocks of an EMG. Their machine gets 900 pieces of raw data and saves them in the machine. During surgery, the machine is again attached to the patient and it will let the surgeon know if any of their work with the spinal cord has moved the pateint out of the way they normally function.
That's all fine and good--and why am I describing this to you? Yesterday after I had my EEG, I fell asleep in my chair. When I woke up my feet were awful. The left one (which is my "normal" one was burning and swollen and covered with a horrid rash. My right foot looked the same, but of course, I didn't feel it the same way. I figured that it was caused by something with the EEG. I was told that nobody ever had an allergic reaction to the glue before. There's always a first time--and I tried putting ice bags on my feet. My third shift nurse took one look and called it an allergic reaction and got me an order for benadryl.
The bright side is that when I took benadryl along with flexeril (muscle relaxer...) I got 6 hours of uninterupted sleep. I got up at 4 this morning. I have taken two naps and am trying to occupy myself so I don't feel so nervous. I have one more scrub down with antiseptic wipes yet, and then, its all about the surgery.
My IV is running low and I think that means its time for me to sign off. I'll be back when I am able.
Saturday, May 31, 2014
There just isn't a lot to do here--I get up and walk with every person who will walk with me. My leg pain is decreased with the morpine PCA, but it rears its ugly head when I stand up from the chair or sit down or go near that bed. After a few laps around this floor, I am limping pretty significantly which tells me that the pain meds are masking the issue which is helpful in a way, but not a problem solver. I haven't screamed at my leg all day today and that is a first in well over 3 weeks.
I am thinking too much--The test I need on Monday is (I think) a CT Myelogram. I cannot help but remember that the entire saga with my back began with someone injecting dye (and bacteria) into my spine. Now, to fix my leg, I need a test where someone gets to inject dye into my spine. Now, I am convinced that there is high quality care here, but that little nagging thought is with me nonetheless.
I have to miss the big shower our church is holding for my son Mitchell and his fiancee, Laura tomorrow. I had to miss her shower because of my surgery and this makes me sad. I am trying to keep my eye on the golden ring--being able to enjoy their September wedding, but this is special and fun. All of my other kids will be there and they are going to call me and do facetime from the party. (I haven't done facetime, but I understand it is easy enough to do.)
Finally, I am thinking about the two possible procedures I will need toi handle tis impinged nerve. If it is the little one--debriding the nerve and ridding me of some of my many bone spurs--well, hallelujah. If it is the big procedure, I have this horrible thought of waking up with my hands restrained and a tube down my throat. I really, really don't want to ever experience that again. I know I have no choice.
Finally to add to my anxiety--I got a nasty email fromt he principal on Friday. She sent me a weird email on Thursday about my job and I sent her a response asking for clarification. She didn't answer, so I sent a similar email to my Title 1 director and our HR guy because she answered my question if I would be doing the same job next year with half day Title 1 and half day Professional Development this way: "yes but next year it doesn't look good." I didn't know what the heck that meant--so I asked for clarification. She sent me a saucy email telling me to never ask anyone but her about my position again. (Great, she is at it again...I have been gone for 6 weeks so she has to cut loose on me.)
I have to just work on feeling better and take things as they come--and I will. But--it isn't easy when they are like this!!
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