Category Archives: Lissencephaly/ Miller Dieker Syndrome

Going home !

After two weeks , Grace is going home ! Thank you all for your kind words, encouragement and prayers.

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Of sleeping in my clothes, eating too many Snacks, and Quiet Vigilance

After years of this routine, I have come to know what to expect when my daughter is hospitalized with pneumonia. We enter a strange world where nurses and respiratory therapists and on-call physicians come in and out day and  night and  I attempt to maintain some semblance of normalcy.  There is no privacy and I have no control compared to my regular life.  At home I spend my days doing things of my own choosing, lots of cooking, cleaning, homeschooling, running, walking the dogs, errands. I go to bed pretty early and I get up with the sun and repeat . But  here, I am basically just biding my time waiting for her to get well. I stay here almost 24/7 so I can make sure she gets good care and to be able to talk to the doctors and keep up with how she’s doing.

For example, the doctor on call just came in to take a listen to her lungs and tell me the plan for the day. I think she is getting close to being well. They are being very conservative in their treatment NOW, after trying to rush her last week and she not doing so well with that . But now I think she is could actually handle more aggressive weaning off oxygen. We will find out today because they are going to cut back on her breathing assistance. Today is Day 11 of our, hopefully, only 2019 visit. I see a light at the end of the tunnel, but I must remain patient or I will just get miserable. So far since I started writing this, she has been fine on the reduced support. But the question is how long can she last? They don’t want to wear her out and make her have a setback.

The cast of characters in this never-ending live drama is constantly changing as they  do not work the hours or days that most non-hospital  employees enjoy. The shifts last 12-16 hours.  Most of the nurses seem to work 3 days then they are off again.  The doctor that was just here, John, said he’ll be here for the next four days. He had the weekend off. I can imagine he spent it in his nice house, maybe golfing or cycling or antiquing, with his partner or friends.

The nurses are mostly young and attractive, seriously some of them look like models, of all races, and both genders. I have not had a bad one so far. There have been a couple of less than ideal, less friendly respiratory therapists. Maybe that job doesn’t pay as well. But most people smile and talk to me and all of them are trained to ask if I need anything every time they come in, but normally I don’t . There was one nurse that I spent quite a bit of time chatting with, actually there were two. The first one was when we first got here and he was very talkative and interesting and we discussed hiking and travel. The other one is in her early 40s and dealing with some weight gain so we discussed diet and running and children and how they pay attention to what we say about food and the difficulty of cooking healthy food while working.

This hospital is a smaller, suburban version of the main children’s hospital , providing the same excellent quality, free parking, closer to home, and as the nurses have said, more laid back. The main campus is extremely busy, large, and attracts patients from all over the state and even the world because of the availability of complex and expert care and is located in the middle of the city. This building, however,  is surrounded by green space. I am treated to a 4th floor view of freshly planted saplings and older pine and oak trees ,  small retention ponds with fountains in the middle and the setting sun, as well as the busy interstate which is full of slow-moving commuters and big trucks on weekday mornings .  Pastel colors, children’s art, and comfortable waiting areas make the experience feel less institutional and scary for families who come to the emergency room, outpatient clinics and specialist offices. The first floor has a small cafeteria that is not open on weekends, a coffee shop with Starbucks coffee and pastries, and a gift shop. The patient rooms are private and offer a bathroom with a sink and shower and a pullout couch/bed for the parent, plus a small desk, a TV that is mounted way too high on the wall for these old eyes, and a reclining chair. When my daughter was in PICU at the main campus, things were not so cushy. The rooms were not private and we had to sleep in a main waiting room in recliners or if we were lucky we might get a bed in the Ronald McDonald House family center for the night.

So what do I do all day and night? Mostly I stay occupied and distracted on my computer or phone, but I have also watched movies both on my laptop and on the room TV. So far I have watched Bird Box, loved it, Wonder, Ready Player One, and just half-watched about 20 children’s movies. I also spend time texting my best friend.  I have written a few blogs, read a bunch of them, and spent way too much time on Facebook. My sister brought me some books so I read one of them yesterday, a short book by Gary Paulsen called Mudshark. It is written for children, but I love that Paulsen’s  writing is never dumbed down and includes wonderfully interesting words and creative themes that many children’s authors evidently are afraid to use. I recommend this book.   I have attempted a few runs around the building,  but I’m sad to report that my legs and energy are still recovering from my 121 mile run  so those attempts were mostly walking. Yesterday I managed 3 miles running and walking, but my feet are still bothering me with some numbness and tingling so I am not going to run today, just walk. I also spend way too much time thinking about and eating food that I have either brought to the room or go purchase downstairs. So far I have had several omelettes and two patty melts with fries from the cafeteria, a couple of salads from the nearby grocery store, and one wonderful trip to a Mexican restaurant while dressed in my sloppy hospital clothes. I think the waitress was an angel or maybe she could tell I was very sleep deprived because she seemed extra nice. Free coffee is available , which is pretty terrible tasting, but I still drink it to save money. I brought my own stevia and creamer. I am trying not to gain weight while we are here.

I try to sleep at night, pulling closed the dividing curtain that hides the parent area , wearing ear plugs and an eye mask, but it can be very noisy and I wake up often and just listen to what the nurses are doing. My daughter has had noisy breathing treatments every four hours since we’ve been here plus constant temperature checks.  She does not like the deep suctioning and protests accordingly.  Today and yesterday I was awakened before 4 AM. I nap when I can, but I’m not much of a napper.

The rest of my family is doing okay and  getting by without me at home. I did go home for two nights and while there I cleaned, cooked and replenished the pantry.  I seriously don’t think they miss me that much, except maybe for my utilitarian purposes. Since we spend pretty much all of our time together, I think we all enjoy a little separation from time to time. Of course I was already gone for three days at my race right before this hospital trip, so it feels like I have been gone a long time now.  I am supposed to be volunteering at a trail race in two weeks, but I don’t know if that will be a good idea being gone again so soon. I expect that we will be home soon, so maybe I can still go to the race. But for now, I will try not to think too much about life outside these baby blue walls and try to enjoy this strange vacation where I have few responsibilities, but I am not able to truly rest or do much of anything fun.

Life in hospital mode

Grace has been in the hospital since Thursday. Today she’s on a little less breathing support. She’s seemed extra tired this time and it scares me . I don’t think she’s dying , yet, but I know one day I’ll have to face that happening, and that is not something I want to think about. I felt sad when she didn’t react to me today when I was talking to her and holding her hand. No gripping my finger . She even turned her head away from me, which made me think , at least she moved . Then she gave me a weak “Mmm-mmm”. Not the “Mmaaa” that she sometimes “says” but it was better than nothing. She’s tired and uncomfortable. She cries a little when they change her diaper, like something hurts when they move her . I feel so bad for her.

I just want to get her well so we can plan her 18th birthday celebration at the end of this month.

They have a small cafe/ food court thing here. It’s very expensive if you don’t order carefully. Read the menu or pay! I did pretty well for breakfast $4.06 , no drink . The view is nice from the cafe.

This is a very nice hospital and we are blessed and thankful to live close to it . I switched out with my husband last night and went home where I got a great nights sleep. Then I woke up and after two yummy cups of coffee, I had a very busy day cleaning and getting things set up at home so they can have a good week without me being home. Finally finished putting Christmas decorations away. Got groceries. Now I’ll be here for probably the next three nights . I may get a break if someone else can come stay with Grace. Historically, Grace has not recovered very quickly from pneumonia. I don’t expect it to be a short stay. But I hope I’m wrong!

My hard bed . Not too terrible , but not great.

Feeling Caged: Life as a caregiver

I am a full time caregiver to my disabled daughter. Lately, as in for the past year,  I’ve been feeling extremely isolated, limited , and basically trapped by my life circumstances. Every direction I try to move, I’m hampered by someone else’s dependence upon me. I also have a husband and other children who need me. I feel this sense of needing to do more in a day , that I’m just wasting so much time, that life is passing by. I have very little contact with the outside world other than running errands and through the Internet world . My daily caregiving tasks don’t take all day , but they need to be done throughout the day.

For example, my daughter needs to be fed , given medicine , have her diaper changed, be moved from bed to wheelchair, at certain times . Then she’s fine for awhile. During the time in between caring for her I do laundry, cook, clean , pay bills, and sit at my computer.

And there truly is no easy solution, or even a moderately difficult solution. All choices involve very difficult actions. Part of the reason I’m so limited in my daily life is that I have no income . In order to produce an income, I’d need someone trustworthy to take over my current job as caregiver. It’s a Catch-22 that all mothers have, but especially hard when your child is non-verbal, and totally dependent on you. One option is to find work nights and weekends but then I’d never see my husband. I’m not sure that would be so helpful to our marriage. And the fact is I don’t really trust a non-family member with my precious daughter. Not to mention that finding someone who wants to drive out to our rural home for a part-time, low-paying job is not easy.

This summer has been extra difficult for me and my non-disabled kids because we are so tight financially that we can’t do anything fun. Water parks, movies, trips to the beach are all so expensive. I start to plan a fun day then I think , no, we can’t afford it. We are deep in debt and I’m trying hard not to go deeper. And stuff keeps coming up, like unexpectedly replacing a tire yesterday for $155. So many things needing repairs. The lawnmower, the roof, the truck.

It could be worse. God always provides for the necessities. So why do I feel like this? I’m not good at being poor and staying home day after day after day. I wasn’t raised like this. I did fun stuff in the summer when I was a kid and when my older kids were young. Things have changed and I just don’t know how what I’m supposed to do. Our daily routine has been reduced to mostly eating, sleeping, and playing video games/being online . And of course I run. Even my running is limited. I can leave the house for a few hours at a time, but that’s not really enough to participate in the outside world.

People who don’t know us very well tell me to do this and that. But I have no help with my daughter . I can get an occasional babysitter but it’s unpredictable. And most of their ideas require, at the very least, money for gas and food. Something’s gotta give . I’ve been praying and asking God for guidance . I feel like He’s keeping me here with my daughter, so I am trying hard to be patient. Some days are better than others.

I wrote this post a month ago. I’ve since been on vacation away from home , without my family,  for a week. All it did is make me wish for more. I missed them, but I didn’t miss the cage.