We have had quite a bit going on since my last update, so I’ll give advance warning that this update may be my longest yet. Hopefully, the updates we have already sent about my recent hospital stays will help keep the length of this one under control. We’ll see!
Over Easter weekend, we went to Jamaica with friends for 6 days. It was Luke’s first plane trip and first trip to the beach, so he had a big time. The plane trip went better than expected, but the 2 ½ hour bus ride to where we stayed was miserable. We were all a little queasy, but poor Luke actually got sick! Thankfully, he didn’t seem too upset by it. The weather was wonderful, the beaches were beautiful, and Luke had a fabulous time with his daddy. Unfortunately, the mosquitoes were voracious. The nets over the beds clued me in early, but the nets and bug spray weren’t much defense. Also, Jamaica is not handicap friendly. Everywhere we went the ground was so uneven, I wasn’t comfortable walking around without a steadying hand. And there were stairs all over the place with no handrails; even in our villa. Jin got a pretty good workout every day helping me get around. I am glad we went, but I was relieved to be home. God bless ADA regulations! I could tell Luke was happy to be back as well, but he went through some daddy withdrawal.
In mid-April, Jin and I went to a mini ALS clinic to see the respiratory techs since I had a pretty bad cough during my last visit. Without my cold, I scored a 63 which was lower than my previous healthy score of 76. I still felt a little congested, though, so I thought that might have affected the reading. My weight was holding steady, so they didn’t push the feeding tube too much, but my continued speech deterioration had them ordering another modified barium swallow. Dr. Glass also wanted to have me fitted for a power wheelchair, since it can sometimes take months for actual delivery. He was worried about how often I was falling and didn’t seem to trust my assurances that I fall very well. J Throughout years of horseback riding, gymnastics, and soccer I think I’ve become somewhat of an expert, but he was unconvinced and I agreed to the appointment but warned the chair might sit next to the walker in the garage until I felt I was unsafe.
As most of you know, Jin and I went to the state capitol later that month to see the governor sign an ALS proclamation. And yes, I walked up the steps but not because I was being stubborn as Jin reported. I just didn’t want to walk all the way around to reach the ramp entrance! I figured the stairs were the lesser evil. And I’ll also admit that by the time we reached the governor’s office, a wheelchair was starting to sound pretty good. I’m sure Jin had the same thought, but he was smart enough not to mention it. By the next morning, I was exhausted. When I stumbled to bed that Tuesday night, it was obvious I caught whatever Luke and Jin had the week before. I stayed in bed all day Wednesday with a fever, stomach cramps, a headache, and an annoying cough. Every time I tried to sit to drink or take pills, I thought I would fall over. It took so much energy to try to stay hydrated and fed that for the first time, I seriously considered getting a feeding tube. Luke was really sweet, though. Abbie said he would come in to check on me, see that I was sleeping, say ‘hush’ with his finger pressed to his nose, and shut the door. What a thoughtful son. I thought I was feeling better by the time my family arrived on Friday and even had a real breakfast Saturday morning. That night, though, I doubt I got any sleep; every breath resulted in a coughing fit. By the time I got out of bed Sunday morning, my legs were shaking so badly I couldn’t walk on my own. Every time I gasped for air, my back would cramp and I’d start coughing again. By the time Jin managed to get me to the bathroom, I felt like I was suffocating which scared me enough to make me cry. Since that wasn’t helping my breathing or the cramp in my back, I tried to stop as soon as I could.
Most of you know the rest. On Monday, I was admitted to the hospital with pneumonia and spent the rest of the week missing Luke and wanting to go home so I could sleep in my very comfortable bed. The pneumonia was almost gone by Saturday and I was up and walking around, so I convinced my doctor to discharge me. There was no way I wanted to stay until Tuesday as he’d told Jin! I was good about taking it easy the following week, and the follow up chest x-ray that next Friday showed my lungs were completely clear. In addition to being absolutely miserable, I lost five pounds while I was sick. Not good, but the lost weight helped to cement my decision about getting a feeding tube.
While I was in the hospital with pneumonia, the MDA dropped off a loaner wheelchair for me to use. Over my recuperation week, I started to roll around the house to conserve energy and stay mobile. If I sat down on a couch or chair, I needed help to get back up. But when I was using the wheelchair to get around, it wasn’t an issue. Plus, Abbie didn’t have to worry about me falling. At one point, though, I did come a little too close to the top of the stairs when I was rolling backwards to chase Luke. It would be pretty ironic if I were seriously injured in a fall because I was in a wheelchair rather than on my feet! I’ve been more careful since.
In mid-May, Jin and I spent a day at Emory for another modified barium swallow exam and to be fitted for a power wheelchair. As I thought, I’m doing fine swallowing; everything went down correctly without any issues. The wheelchair appointment also went well. I drove the model they are ordering for me, and I was able to maneuver pretty easily. As much as I’ve argued against getting a chair, it will be good to have. I just wish getting it around would be easier; we’ve concluded that we’ll need to buy a van to transport me in the chair. It’s not a good time for this unplanned expense. Plus, we’ll be paying some portion of the obscenely priced power wheelchair and we’ll need to buy a manual wheelchair ourselves as backup and for air travel. I’ve become a pretty expensive wife.
Two days later, we were back at Emory for my feeding tube procedure. That experience has been well documented, so I won’t rehash it. Jin was at home the entire next week taking care of me since I couldn’t handle the bathroom without him. I basically held him captive all week for 10 minutes of help every few hours. One of the doctors at Emory said that recovering from a feeding tube procedure is like recovering from a gunshot wound. This makes sense since they put a hole in my stomach, but I just didn’t think it through.
Jin spent a lot of his time that week and since trying to sort out my medical equipment. Ordering a manual wheelchair and an over-the-bed table shouldn’t have required so much effort! I wouldn’t even attempt to guess how many hours he has spent navigating the medical subculture to find answers. Plus, Jin has been trying to figure out the van situation so we have a way to transport my power wheelchair once it comes in. After the warnings we were given about the slow turn-around on these chairs, we thought we’d have plenty of time to research the different types of vans. We were surprised when they recently told us the chair should be here before the end of the month! It will be good to have around the house and neighborhood until we buy a van, but now I think Jin’s feeling rushed. Our wheelchair tech actually said we shouldn’t buy anything, though, until we get the chair and can be certain our choice will work as expected.
Ever since the pneumonia and then the feeding tube surgery, I’ve been feeling more weak and shaky when I walk so have been choosing to roll myself around in the borrowed transport chair quite a bit to conserve energy and be a little safer. As an added bonus, riding in the chair lets me move around faster and means I need a little less help. I’m still able to walk and can climb steps with help, but I’m trying to be more conscientious about safety. I think I’m getting better, but Jin may disagree. If I’m going to be using a wheelchair more often, I may as well be comfortable. The powered chair will be a huge improvement over what I have now.
As for the feeding tube, Jin and Abbie have become experts. We use it about three times a day to supplement my diet with Ensure and give extra water. Since I need to take small sips of water to avoid choking, it’s hard for me to drink enough otherwise. The good news is that the incision no longer hurts and I’m gaining weight back after reaching a low of 115 pounds. Also, I have an appointment to replace the annoying, foot long feeding tube with a button flush against my stomach on June 20th. I’m literally counting down the days!
Besides all that, here’s my current status:
- Using the BiPAP consistently at night.
- Trying to remember to use the cough assist again after letting my stomach heal.
- Walking and talking with considerable effort.
- Taking Rilutek, Quinine, and Arimoclomol prescriptions. Planning to begin Lithium again now that I’m healthy again. I’d only been taking it a few weeks when I got sick, so we put it on hold.
- Dealing with tight, sore shoulders since they compensate for my hands and forearms.
- Worrying about my neck muscles since they tire quickly.
- No longer attempting to talk on the phone and have asked friends and family to get set up on IM.
- No longer driving.
Luke is fantastic and celebrated his 2nd birthday June 8th. He had a blast at the pool party with his friends but became a little too bold in the water for his momma’s comfort. I think Abbie may have Luke swimming by the end of the summer. J He also continues to amaze me every day with his growing vocabulary. It’s crazy to hear my baby start to speak in sentences! Luke has become such a little boy. It’s fun to watch but heart wrenching at the same time.
A few things Luke has been up to lately:
- Nods his head while asking us for something as if trying to influence our decision.
- Puts his finger to his nose, says ‘hush’, and whispers ‘sleeping’ when he sees a person or animal sleeping in a book.
- Starting to sing along to ‘You are my Sunshine’ and ‘Twinkle, Twinkle Little Star’ in bits and pieces. He has such a sweet little voice.
- Pushes buttons on his guitar while spinning in circles and bouncing up and down.
- Says ‘eww’ and ‘yucky’ when he’s getting a ‘big poopie’ diaper changed. Has started to point to his ‘hurt’ wanting a kiss.
- Starting to potty train and finally went pee in the potty the day after his birthday. When he finished, he looked up at us and said ‘bit more’. He seemed very disappointed when we said it was all gone.
- Says ‘No poopie, no poopie’ while he’s pooping in his diaper to avoid the potty.
- Starting to sing his ABCs.
- Completely understands most things we tell him to do: give daddy a hug, ask Abbie to put your shoes on, don’t step off the deck, etc.
- Tests us more often over obedience.
No matter how badly he sometimes behaves, though, Luke is incredibly good natured. I know I have a mother’s bias, but he’s a wonderful little boy.
Ok, almost done! I just want to let you guys know that Morris Jewelry, my dad’s jewelry store, is having a charity auction to benefit the foundation from June 19 – 21. Anyone can participate, so please help spread the word. I’ve attached their flyer and more details can be found at http://www.morrisjewelryauction.com. This website should be available soon.
Also, since everyone asks how they can help but we never have a ready answer, we have recently decided to set up a website using http://www.lotsahelpinghands.com/home/ to help us manage things. Here’s their synopsis:
Lotsa Helping Hands — a simple, immediate way for friends, family, colleagues, and neighbors to assist loved ones in need. It’s an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion. It’s also a place to keep these "circles of community" informed with status updates, photo galleries, message boards, and more.
We haven’t created the calendar yet, but thought we would start allowing people to join. If you’re interested, click on http://www.lotsahelpinghands.com/c/605279/ and enter your email address under “Interested in becoming a member of this community?” to get started.
Thanks for keeping us in your prayers!