Two Steps Forward... One Step Back

Ok, so I'm really behind..... really, REALLY behind on this! But life has been pretty good lately, so not much to talk about. I'm sure you don't really want me to tell you about our boring daily routine. So I guess I'll pick up where I left off before. 


Michael got to go out for almost the whole day for my birthday!!! It was so amazing after all we had been through recently -- by far the BEST birthday present I could have gotten!!! We picked him up at the earliest possible time (around 10:30 am) with strict instructions that he had to be back by 8:30 pm. It was so funny to have a curfew after so many years! We joked about it all day. Well, the plan was to take him to the mall for a hair cut first thing because he hadn't had one in so long. Of course, our hair girl was running behind when we got there. So we walked around and had a snack. Even though he could walk pretty well, his physical therapist insisted he use a wheelchair during the outing to make sure people didn't bump him. Plus, he tired out pretty easy, and we wanted him to last the whole day. Well, it ended up taking FOREVER for the hair cut. Also, since he had been so isolated for so long, he was REALLY overwhelmed by the mall -- at Christmas time, no less. We didn't get out of there until the late afternoon. Then it was off to the house to rest, get ready for dinner, and visit our pets. Our doggies (daddy's girls) went NUTS over him!! He was so worn out that he took a little nap in the recliner with the doggies while we got ready. We went to dinner with my mom, his mom, and an awesome couple that are our dear friends. It was so yummy! He even arranged for a cake from Rick's and a gift from the fancy downtown jewelry store!! BEST DAY EVER!!!!!! He was so worn out that we took him straight back after dinner -- well before the curfew. 


He continued daily therapy at the rehab hospital. They kept adding in additional therapy whenever they had extra time, and he got up to 7 therapies a day (the minimum is 4)!! He also got a red badge, which allowed him to transfer from the bed to his wheelchair and go to the bathroom on his own, and a blue badge, which allowed him to walk in the halls with his walker and an escort. We were so proud of those badges!! The only other badge was green, which was completely independent. I told him we weren't sticking around for that badge -- he'd just go home! And that he did!! On December 15, he was discharged for home!!! It was so great!!! 


Then, on December 21, he had a check up at the pulmonologist. It's kind of strange because we thought the appointment was on January 21, but he went anyway. His mom took him so I could go to work that day. It was scheduled as a follow up because his chest x-ray at the hospital had shown enlarged lymph nodes in his lungs. They didn't think it was cause for concern but just wanted to make sure they had gone down. The good news was they had, but the bad news was blood clots had formed in his lungs (pulmonary embolism). He was admitted to the hospital -- IMMEDIATELY. We were so sad about that because it was so close to Christmas. Michael's sister was due to fly in the next day from Cleveland, and he was so excited to be able to go pick her up. Now he couldn't :(. He was started on a series of blood thinners. First, he had to get some super strong shots that would work in the short term to get rid of what was there. Then, he also had to start taking warfarin pills for the long term, which he will be on for the next 3-6 months. They let him go again on December 23, so he didn't miss much time with his sister. Little did we know, the shots they prescribed him were next to impossible to get and cost a fortune!! It took all afternoon on the 23rd and most of the 24th to get them, but we finally got some! A HUGE thank you to Collier Drug Store on Dickson Street in Fayetteville and Mr. Collier himself for staying open an extra 30 minutes for us on Christmas Eve!!! I nearly cried when he handed it to me. 


Since then, life had been pretty good!! We had a great Christmas -- very low-key and easy. We had a nice long visit with Robin and still wish she was here with us. Michael had a fun birthday at his mom's house on New Year's Eve! We ate at Mellow Mushroom, and he had a Captain America cake!! He got way too much stuff to play with too!! He continues to go to outpatient physical therapy twice a week and can walk pretty well for a long time these days. He still uses the walker but mainly just for balance so he doesn't fall. He can pick it up and walk with it, and he's getting to where he leaves it when he's walking around the house. He's even getting back to work, but I'll leave him to tell you about that if you're interested. We still have to get his blood drawn regularly to check his levels, but that's going so well that they have extended it to every 2 weeks now. 


So life is pretty peachy!! Here's to an awesome 2012!! Happy New Year! 

Better Days

So......... it's been a long time! WAY too long!! To be fair, I have a good excuse. The internet was down at the hospital because they were doing construction. And we've been BUSY! Michael has actually been getting on to me for not updating lately!! The good news is that's how well he is doing!! He can actually check the blog and get onto me for not doing it. I suppose that's a good thing. ;)


Anyway, back to the story. Michael continued to progress with his daily therapies. He got off the ventilator with no issues at all. His numbers remained incredible, and we haven't looked back. He also got this little cap that allowed him to talk and start eating food. That was a huge improvement. His first real meal was soft tacos and he was so excited even though he could only eat 1 taco. Then, one morning I came in to ICU as usual, and there was some stranger in his bed!! I just stood in the door and stared. There was a woman in there, and she asked if she could help me. I just stood there and shook my head because I wasn't sure what to do. I finally found a nurse that we were familiar with and asked where he had gone. Turns out, they got 5 new ventilator patients during the night and decided it was time to move him to the regular floor. By the time I found him on the 5th floor in the Senior Specialty Unit (that's the only open room they had at the time), he was a wreck. He did not like that they moved him in the middle of the night with no one there. They were supposed to call me, but they did not. He was uprooted at midnight, and he just didn't like it! After I got there, he calmed down some. Turns out, he liked his new room, and he did well there.


After he mastered sitting on the side of the bed, they moved on to standing. That was harder as his legs were just not coming back as fast as his arms. He struggled with that for about a week or so before they realized he was actually using the wrong muscles. He had been cheating with some of his movements by using his trunk muscles instead of his extremity muscles. Once they realized that, they could target the right muscles, and he started to progress again. They had also skipped a step in the standing process because he had been moving so quickly. But they decided to go back and add that step in too. He was strapped to a table (called a tilt table) that raised all the way up so he was standing, but it was supporting him. This allowed him to feel what it was like to stand again and let his muscles realize what they needed to do. He could practice walking by moving his knees back and forth while he was upright. He only had to do this for 2 days before it all started kicking in, and he was able to stand. They also started getting him into the wheelchair to work his arms and get him mobile again. Then, next thing you know, he was walking!! Just a few steps with a walker, but that's a start!


Since everything else was going so well and he was progressing so quickly, they also started removing all his extraneous tubes & wires. First, he got his catheter out. There was really no reason for it anymore. Then, they changed his trach to a new smaller one with a solid cap on it. If he tolerated this one well, he could get it out soon. He did fine with it and said it felt great. He passed his swallow study and was advanced to a regular diet with no restrictions. Then, they decided to take the trach out for good. They also finally took out his feeding tube but not without some persistent complaining about it. With him all this new-found freedom, they started talking about moving him to the rehab hospital during the week of Thanksgiving. We finally talked them into waiting until the next week because he wouldn't get much therapy during the holiday weekend. So he finally made the move on Wednesday, November 30th. By the time he left the hospital, he had walked 80 feet in one stretch with his walker!! 


He has now been at the rehab hospital for 1 full week. He gets at least 3 hours of therapy every day but Sunday. He loves his main therapists, and they are doing great things with him. He's learning so much and becoming so strong and more independent. He can now walk over 300 feet at a time with his walker and only someone to supervise him. I can assist him from his bed to his wheelchair and to the bathroom now. He really just needs me to steady him because he is still a little wobbly at first. He's doing so well that both the doctor and the physical therapist have granted him furlough this weekend to go eat dinner with me for my birthday. It will be the best birthday present ever!!

The Little Engine That Could

By Friday (Nov. 4 – I’m a little behind), Michael could not lift his head off the pillow. He could not move anything except to turn his head from side to side. His nurse on Friday night also informed us that we would not be allowed to stay with him at night either. Until then, someone had stayed with him every night and pretty much all day too. One of our first and best nurses had told us that it would happen eventually because it was really against the rules for us to be here during certain hours. So we reluctantly went home and left him alone & scared. Turns out, it wasn’t that bad. His nurse was really good at positioning him & gave him a good bath. He actually got some rest for the first time too. When I came back the next morning, he was in a good mood and looked better than he had looked since we got here! First thing, he told me to lift his hand & he moved his finger ever so slightly!! It wasn’t much, but we’ll take it!! That was the beginning of the upswing. Since Friday night, we have been leaving when visiting hours are over for the night and coming in the next morning. Everyone is getting more rest, and it’s definitely showing.

Since then, he has moved a little more every day and gotten a little stronger each day too. He’s been getting physical therapy & occupational therapy almost every day since we got here. On Sunday, he could move a finger on his other hand. On Monday, he could shrug his shoulders, and the neurologist couldn’t push them down. He actually started helping the occupational therapist with her exercises this week as much as he can. By midweek, he could push his legs a little too. On Wednesday, the physical therapist wanted him to try to sit up on the side of the bed. It was quite an ordeal and he was terrified the entire time, but he did it for 10 minutes! He said he felt like he was falling the entire time because he had so little control over his muscles. He did get a back rub while he was sitting up, so that must have been pretty nice. On Thursday, he sat up for about 12 minutes and about 25 seconds of it was completely unassisted. We were so proud!!

Also, they started weaning him off the ventilator this week. They started on Monday with the trials where they turn the assisted breathing off and let him do it all on his own. The machine is still attached so if he stops doing it or breathes too slow or too fast, it will alarm. They started doing it for an hour, then 2 hours, then 4 hours. He passed them all with flying colors. At first, it did make him tired to do it all himself, but it must be done slowly because he has to build his muscles back up. One time, he said he must have been doing good because he didn’t even know the machine was off. Yesterday, they started disconnecting the machine for a while to see how he does. If he continues to do well, he may be off the vent by next week. That would be a huge relief!!

All in all, this has been a great week for us! Yes, we are still in the hospital, and the reality is setting in that we will be here a while. We are starting to get tired of it, but we’re thankful for all the great care he’s received here so far. We are also very thankful for all the prayer, support, and encouragement from everyone!! We can definitely feel it and would appreciate your continued prayers. 

Time Keeps on Ticking

After surviving the trauma of Wednesday, what more could come our way? It was really strange & surreal to say, "My husband's on a ventilator". But hey, sometimes the truth hurts. They put a fancy balloon up his nose to stop his nose bleeds, so there was a tube coming out his nose. They put in a feeding tube, so there was a tube coming out of his belly with brown goo being pumped in constantly. He had a catheter because they were worried his abdominal muscles were not strong enough anymore. Since we walked into the ER triage room, he had a blood pressure cuff on his arm. He also had an IV, heart monitor, and pulse ox on for constant monitoring. Tubes & wires were coming out of him from every direction. And now, he had a tube coming out of his neck that was breathing for him. They no longer sedate people that are on the vent if they can help it, so he was aware of what was going on. He kept telling me that he didn't know how to breathe, and I had to keep reminding him to stop trying because the machine was doing it now. 

He was very agitated Thursday morning. His trach was gurgling, and he DID NOT like it! Our favorite doctor, the pulmonologist, said we made the decision just in time because he was drowning in secretions. Also, he could talk, which we did not expect. The doc said that means it was not working properly, and air was escaping around the bulb. They made some adjustments, and it got a little better. But he couldn't talk anymore. They also put in a better IV, and none too soon as his whole arm was swelling up with fluid. Other than that, it was a pretty easy day after the events of the day before. But then came the night. He had to be "cleaned out" for a colonoscopy in the morning. We got NO sleep! The only benefit was that they could put the solution directly into his stomach through his tube, so he didn't have to drink it. 

Friday was a colonoscopy and EGD, so he got scoped from each end. They didn't find anything, but while they were in there, they fixed his trach by moving it up on his neck. That means they made a second hole in his throat, but apparently they seal up very quickly. The surgeon told us it would be closed in 24-48 hours. This meant he could not talk at all now.... and I became an expert at reading his lips. I think I get bonus points for getting "Mila Kunis" (on the FIRST try) & Kennedy assassination!! Who else could have gotten those? Friday also brought us Page, his RN, who according to him was "easy on the eyes". He asked her how she felt about older, married, paralyzed men who had no income. I felt a little offended, but he clarified that he would not leave his wife! That's good to know!! 

The Roller Coaster Ride

After being admitted to ICU, we had quite the wild ride. Michael continued to get weaker until he basically had no movement at all in his extremities. Early Monday morning, the doctors started coming around. I'm pretty sure every doctor in the building came by to see him, but we were warned in the ER about that happening because his disease was so rare. Doctor after doctor came by and listened, poked, probed, and prodded him -- only to tell us they thought it was GBS and start giving the standard explanation of what that is and what it would mean. Then they would start with the worst-case scenarios -- ending up on the ventilator. The good news was that they all said he had a very good chance of recovering fully with time. That is still what they are saying, so we are very thankful for that optimism and prognosis. They also began on the only treatment option we had, which was 5 rounds of IVIG (IV immunoglobulins). That would hopefully slow down the disease, but it can take a couple of weeks for us to know if it worked. 


Tuesday was much of the same. Nurses came in every hour or two to do neuro-checks and respiratory came in constantly to assess his ability to breathe. The doctors continued to stream in too. They began talking about all the long-term possibilities, like putting in a better IV line and more talk of the ventilator. He still seemed to be getting weaker and losing more abilities. Nosebleeds also started because of the blood thinners he was on, but they were pretty scary because it would mostly come out his mouth. It seemed like it was a LOT of blood, but they said it wasn't as much as it looked. This meant we also started seeing an ENT (ear, nose, throat) doctor. 


On Wednesday, he was having a harder time breathing, but his numbers will still good. At this point, he was having a lot of mucus that he needed to cough up but just couldn't do it. We had a very, VERY good Pulmonologist that we really trusted, and he said he thought it was time to consider putting him on the vent voluntarily to avoid an actual emergency. It was very difficult, but we decided it was best because he was struggling so much more to breathe. We decided to do a tracheotomy because the doctor thought that would be best, and he would also need a feeding tube. That was the hardest decision ever!! The doctor told us to get our affairs in order because he would no longer be able to talk with the trach. We asked him how he could communicate because he couldn't move ANYTHING at that point, and he told us it would have to be with blinks -- 1 for yes & 2 for no. They also did a spinal tap that day to try to confirm GBS, which scared Michael too. He did not want to do that, but they said it was important to check. That was the LONGEST day too because we had to wait until 3:30 - 4:00 for the surgeon. After it was all over, he was pretty freaked out and thought it was all a dream. He told the nurse that he wasn't ready to see us because he was so confused about what had happened. They gave him so anxiety medicine to calm down and finally allowed us back. He still does not remember hardly anything from that day. He wasn't knocked out too much because they gave him the "Michael Jackson" drug (the doc's words -- not mine), Propofol, which does not put him in a deep sleep but makes him not remember anything. But I still remember it ALL too well! 

A Whole New World

Last week, we entered a very new, bizarre adventure. On Sunday, October 30, my husband, Michael, was diagnosed with Guillain-Barre Syndrome (GBS). It started on Saturday night when Michael felt a little wobbly while walking around the house. We first noticed it when he came to the table for dinner, but we didn't really think much of it because we had been sick with sinus infections. It was just like his knees were going out on him. We had walked around the Farmers' Market that morning even though we weren't feeling great, so we figured we just overdid it. He went to bed shortly after dinner because he was not feeling well. 


On Sunday, he got up and felt still weaker in his legs and some in his arms but was still able to walk. He stayed in bed most of the day, and I ended up going to the walk-in clinic for my sinus infection. After I got a shot and some meds, I was much better, but he seemed to be getting worse. We contemplated taking him to the clinic but figured they would not be able to do anything for him there. After lunch, he tried to get out of bed to do the the bathroom and ended up crawling there. I found him laying on the bathroom floor and could not get him up. He couldn't grab anything to help me either. I was finally scared and called his mom. Fortunately, my mom was already at my house for the weekend. We ended up getting him in a rolling office chair and wheeled him out to his mom's car. Then, we were off to the ER to wait for HOURS... on the weekend, no less! No one seemed to take us very seriously while we waited, and he continued to get weaker. 


Once we were finally in an ER room, doctors started getting worried, and GBS came up immediately. When we started out in the ER, he could hold a pen & sign his name. By the time he was admitted to the hospital, he could not even hold the pen, let alone sign anything. Without much hesitation, he was admitted to ICU. The only thing that took very long was getting the room ready, and he was moved upstairs at 3:00 am. By that time, he couldn't even hold or squeeze a nurse call button -- not even the special one they arranged. Fortunately, he was his nurse's only patient that night, and she stayed with him through the night. We were sent home because ICU has very strict rules on visitors and visiting hours. And so, the journey began....