The Roller Coaster

Remember me? My apologies for the long absence but I've been a bit indisposed for the month of July which left almost no posts.

I've been in the hospital.

As the title of this post reads, it's been a roller coaster for 3+ weeks but I've been home for a few days now and we are slowly getting into a new normal around here. I'm going to try to document the whole thing but my memory and take on it all might be a little different than what others experienced. Maybe I can talk Joe into guest posting from his perspective. Although I'm not sure he ever wants to relive these weeks ever again.

It all started July 8th when I came down with a fever. It was a few days of flu like symptoms. I went to the doctor after a few days and they said it was a virus and to keep hydrated. Then the rash started. I was pretty much covered head to toe. Back to the doctor I went on Friday, July 12 and they diagnosed Hand Foot and Mouth. There isn't anything that can be done for it. They said to try to eat and drink as much as possible and it could take up to 10 days to pass. We hadn't been to Pontiac in 3 weeks and Barrett really needed some stimulation so we kept our plans to travel up north. I packed lounge clothes and planned to be in bed most of the weekend. Saturday, July 13th I woke up still very sick but this time I was having a hard time breathing. At some point, I decided I would try to get in the shower. I got in and promptly laid down. No way was I going to make it. Joe came in to check on me and we decided that I needed to go to the emergency room at St. James.

We get to the hospital and my fear that we would be waiting forever is not needed and they send me straight to a room. There are lots of familiar faces of moms of past classmates and other people we know. The nurses do a check up and ask me a bunch of questions. I don't remember this all that well but I think at some point they must have done a chest X-ray. A doctor came in and told us that we would need to go to either Bloomington or Peoria to the hospitals that are better equipped to handle the situation. We chose Bloomington mostly because it's halfway to home and more convenient so shortly the ambulance came and took me down to St. Joe's.

I remember the ambulance ride. The tech (what is the correct name for this?) was able to keep me calm and relaxed. She kept having to take my blood pressure like every 5 minutes and I remember her holding my hand. We got there quickly with Joe following. I remember being wheeled into the hospital and quickly meeting with a doctor to go over my symptoms and how I was feeling. I'm told I was admitted to the ICU.

Then I'm lost for about a week and a half. I have no memory of this time.

Here is what I'm told.

Sometime in the middle of the night, doctors and nurses flood my room and I am sedated, intubated and put on a number of other drugs. I have A LOT of fluid surrounding my lungs so I am put on the ventilator to help me breath. They are also a little worried that I might have fluid or an infection around my heart but that turns out to not be the case. The next few days have me still sedated and on the ventilator. The doctors are trying to stabilize my stats. Each time they try to turn down the oxygen, my body doesn't like it. Eventually, they stabilize my blood pressure and turn down the sedative in the hopes that I will wake up.

It is now Friday, July 19th, and I still have not come out of the sedation but I make small movements. They tell me I scowl when I'm unhappy which sounds about right. :) I don't squeeze hands when asked. I have to mention here too that at this point, I'm gaining weight rapidly. I've been told I reached up to 216lbs due to the infection or medication or whatever. For a frame of reference, I weighed 160 when I entered the hospital at 39 weeks to give birth. I'm glad I was out of it to not witness that nightmare!

At some point, the doctors had to insert a chest tube into my torso to help my body drain the fluid from my lungs. This relieved a lot of pressure and helped the meds do their job. This also was when they were able to stabilize my oxygen levels and started to prepare to get me off the ventilator. I believe I was still sedated at this point because I don't remember getting the chest tube.

By Monday, July 22nd I am awake but I'm not exactly sure which day I woke. For the next few days, I still have very few memories even though I am awake. I remember the boots they made me wear that hooked to a machine to put pressure on my feet. I remember gripping Joe and my dads hands tightly as I lay in bed. I remember the nurses washing my hair. I remember the sponges they used to brush my teeth around the ventilator. I remember the faces and voices of the nurses. I remember rolling over and the strength it took while they changed my sheets. I remember being really thirsty and wanting nothing but water. I remember not being able to talk and having to write letters on Joe's palm to ask for something. These next few days are some of the hardest. I'm feeling very anxious, trapped. I don't want people to leave my side. I start thinking that I'll never see Barrett again. That we'll never be back to living the life we had prior to all this.

Thursday, July 25th is when I really start to get my memory back. This is the day the ventilator is removed. Prior to the removal, all of my family is in the room with me. The nurses told me that I was still on the ventilator but that they were turning the oxygen down so that I would need to breathe on my own. This puts me in a trance where I start to focus on breathing techniques and relaxing. My family takes turns to breathe through with me. I do this for like an hour.

The doctor comes in and with a big gallery of on-lookers, the ventilator is removed. I have to take a deep breath and push out as much as I can while they pull. I can still hear my dad gasping for breath as it was removed. It didn't hurt but it wasn't pleasant either. The taste in my mouth is unlike anything. It's vile. They give me an oxygen mask right away that is pumping high with oxygen. The smell is worse than the taste in my mouth. I lay in bed for a while. I think I take a nap. Eventually, they bring me some water to try. They want to start slow and see how my body does with digesting since it has been 2 weeks since I've had any food. I've been getting nourishment through a feeding tube.

This is where my recovery begins.

I am very weak. Someone told me some statistic that I've since forgotten but for each day that I laid in bed, I lost so much muscle mass. At this point, I cannot stand on my own, raise arms above my head, really do anything on my own. I am still very swollen and losing fluid at a rapid pace. A kidney doctor is added to my case as my kidneys seem to be working overtime to flush everything out of my system. I'm awake and slowly getting better which is great but I'm still in a limbo because I can't just return to life as normal.

What is my official diagnosis? Mycoplasmic pneumonia. Symptoms include chills and sweats, fever, headache, etc. which were all signs of what I had. However, unless you do a chest X-ray (like they did in the ER), it is hard to diagnose. I had a pretty aggressive form that moved very quickly. I had to be on antibiotics to fight the infection for another week after the vent was removed. I remained in the ICU for most of that time mostly because they had the space for me and I think the nurses wanted to continue to be a part of my recovery.

Speaking of the nurses, I can't say enough about how amazing they were. That first day that I was really awake and off the vent was a weird one because all of the nurses would slowly come in to check on me and I would recognize them but I really had no idea who they were. I knew they had helped me at some point when I was sedated. Some I didn't know because they only had me when I was very out of it but others hit me hard. It was a odd feeling. They were amazing though. Of course, Joe was a huge hit with them. He was by my side almost non-stop so they got to know him very well. Most of them said he needed to come and work there. One of my favorite nurses, Bailey, came to visit on my last night in the hospital and said that it was now her mission to find a guy like Joe.

So the next full week after getting the vent off was spent recuperating. I was still hooked to IVs as I needed to continue the meds but each day brought about a new milestone. My first day I was only able to walk 5 steps in my room while using a walker. The next day we went out into the halls and I walked like 43 feet. The next day was 60some and then I did the unthinkable and did a full 600+ feet loop around the nurses station. All while using a walker but each day I got better and stronger. Physical therapy and occupation therapy came to see me each day. We worked on walking and balance the most during my physical therapy. Occupational therapy is for every day movements that you don't think about. For example: reaching up to get something from a cabinet so we did lots of reaching exercises to get my arms above my head. Also, putting my hair in a pony tail on my own was hard so we practiced things like that. Sunday, July 28th I was able to take a shower! This was huge. It was occupational therapy that day and extremely difficult but felt amazing. I didn't have enough strength to wash my hair completely on my own. I had to sit for most of it but it was still the most amazing shower ever.

That was how I spent my last week of July. I would move from my bed to the chair a few times a day. I forced myself to eat 3 balanced meals to help get my strength up. Then I had therapy twice daily. A few days in the doctor removed my chest tube which was also a pain free but weird sensation. The wound is mostly heeled from it but I assume I'll have a scar there.

On Wednesday, July 31, I was moved from ICU down to the transitional care unit (TCU) which is the rehab center of the hospital. I was almost strictly done with my IV (only had a few rounds each day of meds) so they moved me to try to get some more therapy in before my release. I welcomed the move because it was another step in the process to get me out of there but I was not a big fan of this unit. At this point, Joe could stay with me in the ICU but the TCU did not have accommodations for that. This was not a huge deal and Joe very much needed to sleep at home in a bed. The whole point of this unit though was to hopefully increase rehab and I did not see an increase in it. I still only saw therapist twice a day and it was for the same amount of time. Honestly, I felt like I wasted the day away in here. I technically could have stayed until at least the following Monday to continue rehab but I was not about to sit in that hospital bed for 3 more days to get an hour and a half of therapy each day. I was ready to be home and my mental sanity needed home way more than I needed that therapy.

So on Friday, August 3rd, I was released from the hospital at about 5:30pm.

It was one of the greatest feelings to be wheeled out those doors. The drive home was so surreal. My parents had brought B down to get him settled and I was so happy to get him home and back to his routine. Speaking of Barrett, I can't thank my parents and other family members enough for taking care of him full time during this entire thing. Maybe this is bad to admit but he was hardly on my mind during it all especially in recovery because I knew he was well taken care of. He loves my parents house and feels comfortable there so it was not hard for him to use that time as a little vacation. He got to have so many neighbor playdates and trips to see Joe's parents and my siblings and friends took turns playing with him when my parents needed to be at the hospital. I can only imagine how exhausted they were though. It's a lot to go from 0 to full time care giver.

I'm a few days post release and we're slowly continuing with recovery. My walking and balance is much better (I can go to the bathroom by myself and don't need a walker anymore. Woot!) but still need to work on my strength. Joe needs to help me with showering but even those get easier each day. I'm down to 130lbs which is underweight for me (I feel like I'm skin and bones) but I'm trying to eat as much as I can. They have me on a low sodium diet and a fluid restriction which makes things a little bit more difficult but so far, it's been fine. I will be getting home health care through nurses and physical therapists who will come to our home to get my strength up and continue to monitor my progress. The nurse was here on Sunday to get the paperwork going and I'm hoping to hear from PT today on when we start our schedule. August 13th is my arbitrary day that I would like to be as close to back to normal as possible (as that will be 1 month from hospital admission) but I don't think we'll quite make that.

Either way, I'm thankful to be getting better every day. I've got lots more living to do!