Super Moon. Super Cold.

Good afternoon everyone!  This is Todd, and I am here to provide the “more details” that Melissa promised yesterday.  It was too cold to go outside so we both decided to have a sleepover in the room with Lily! Melissa slept on the couch/bed and I slept in a chair.

Lily had a little initial discomfort with the first higher fat meal, but the second one went much better.  For the first 24 hours, we are monitoring her blood sugar to make sure it does not go too low as her body works through her glucose stores and starts to use fats as her primary fuel source. (This means  a couple of finger pricks, but Lily is such a trooper!)

The classical ketogenic diet is a much more stringent version of the diet that Melissa and I have been following. We eat what we want in moderation while limiting the number of carbs we consume in a day.

Lily’s nutrition is a whole other animal! We are going to be leaving the hospital with a scale and recipe for her daily formula. It’s only 3 or 4 ingredients, but our goal will be to deliver a precise ratio of nutrition (4.5 grams of fat to ever 1 gram of protein/carbohydrate) in every drop of formula.  This level of precision will require some extra work on our part, but we are hopeful to see improvements in as little as two weeks!

While we have been attending classes daily to learn about the diet and how to prepare it, Lily has been relaxing with Child Life.  Bingo, nail salon and Season 3 of Fuller House were on tap for today.  Lily will be going on the full strength formula tonight and assuming all goes well we will be on our way back home tomorrow afternoon.

Just a quick note to let everyone know that Lily was discharged from the hospital last night. Much more comfortable than when she was admitted!

We have a few things to work on to get her back on track but we will spare you the details.

Merry Christmas everyone!

So it turns out that Lily is really constipated, and I am warning you now that this post contains potty talk, so if you are uncomfortable with the subject I recommend the following book: Everyone Poops

Lily’s condition requires us to track everything going in and out of her. In a hospital setting this is an important metric where “things” are weighed to make sure the proper amount is coming out. (Compared to what is going in.).

At home we are a little more relaxed on the matter, but we still keep track of how much, how often, and the “quality”. Unfortunately, “how much” is a subjective term, and not everyone agrees on what constitutes a “small”, “medium” or “large”. So sometimes we get into a situation where Lily get a little backed up.

It’s not her fault, between the medicines, the formula and lack of a properly sized toilet chair ( This could be a separate blog post where I rail against the insurance companies) she cannot evacuate her bowels completely.

Tell help keep things running smoothly we rely on a couple of daily medicines. Miralax and Senna syrup – this line up is new since her spinal fusion surgery. Before her surgery we used only Miralax, but we where concerned it was too harsh on her system, so we cut back on that dose and added the more natural Senna.

That seemed to work fine until we ran out of senna syrup, and our local pharmacy couldn’t order a replacement. To be fair they got a new bottle in right away it was just the wrong dose/ brand (3 times!) so we went without half of her BM meds for a couple of weeks while getting that straightened out.

As I mentioned above, we track this stuff, so it seemed like things were moving right along with no issues while we waited to get the senna syrup sorted out. We got finally got the proper senna syrup from the pharmacy and added it back this week. Problem solved right?

Turns out we were further behind than we thought. Lily didn’t have a good night Thursday and she was really uncomfortable Friday night. So who do you call for backup when your backed up? The suppository! One bisacodyl suppository and an episode of Bob’s Burgers later and all was better. (She slept for a few hours anyway.)

This is the first step we take when we get behind, and usually it’s enough to get us back on track, but she still seemed “off” on Saturday so when Sunday morning (Dec. 22nd) rolled around and she still wasn’t feeling well we started brainstorming. Because of an “unusual” seizure event she had Thursday we started thinking about issues not poop-related. Melissa made a call to Lily’s doctor down at KKI. After a quick phone consult with the on-call doctor it was determined that Lily should be seen by a doctor that day.

And that is why I am writing a blog post from Penn State Hershey Children’s Hospital.
We spent most of the day in the ER where after some X-rays and blood work it was determined that Lily was literally full of poop. They attacked the problem from below with two enemas and then we were admitted so they could attack the problem from above with a disgusting liquid whimsically called “GoLYTELY”
How do I know it’s disgusting? I tried it. But it’s doing the job for Lily, so once that jug is complete hopefully we can be discharged. More blog posts as warranted. Signing off for now from the third floor of the Children’s Hospital in Hershey.
 
 

 

… before I go back to work. So, today is the last day I have to wrap up all of my Lily related projects before I have to dive back into the tsunami of work (starting with my work Inbox).  It has been almost a week since my last update, so let me fill you in on where we are at.

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Working on the orthotics.

Last Thursday night was the first night back to Schreiber since her operation. Everyone remarked at how tall she is now!  In her speech session we reviewed the successful switch access we uncovered while in the hospital, and talked about how we plan to replicate that for her at home.

In PT we stretched out a little bit and we were introduced to  new physical therapist who happens to specialize in feet!  Which careful readers of this blog will recall is currently one of the issues we are having with Lily.  After examining her feet she had a number of suggestions about how we can modify her orthotics for a more comfortable fit, so with some foam and tape she made some temporary modifications.  Once we get the fit right we can use some more permanent materials.

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non-traditional jack-o-lantern.

 

Homebound instruction has been going well.  Ms. Palmquist stops by after school and works with Lily for about 90 minutes.  They even make a few crafts!

Speaking of crafts, I have been doing a little crafting myself. As I mentioned in my previous post, I picked up parts to build some  battery interrupters. They may not look as pretty as the manufactured ones, but they get the job done.

Building things with solder!

Building things with solder!

 

 

The most challenging part of this project is finding a cheap, but compelling toy to adapt. As gadget friendly as we are I couldn’t find any toys around the house that would work, so I made a trip to a few local stores but came up empty. I think I may need to head out to the “As Seen on TV” store!

 

 

Finally, I’m sure a few of you are waiting on the edge of your seat wondering whether we decided on using a Chromebook or a Windows tablet for Lily’s switch access.

<Insert drum roll here>

And the winner is….the Acer Chromebook  CB3-111,  weighing in at just 2.43 pounds this Intel powered beauty will run all day long and at $200 it was the most cost effective solution that included a built-in kitten screen cleaner 🙂

Kitten screen cleaner!

Kitten screen cleaner!

In addition to the screen cleaner, Chrome comes with some nice accessibility options. (Spoken feedback, large mouse cursor, screen magnifier, on screen keyboard, etc)

I ordered the chromebook from Amazon and it arrived in two days.  The switches I ordered directly from the manufacturer, so I am still waiting on them to arrive.  I was hoping to have everything setup and working before I went back to work, but oh well.

Alright, I have to get moving.  Look for more updates later this week.  Signing off.

 

I know everyone got used to twice daily updates while Lily was in the hospital, but I’m afraid I cannot keep up that pace now that we are home. Once her day nurse leaves Melissa and I are on duty until 11pm at night, and that means one of us is taking care of Lily while the other is handling everything else that is needs to get done in a typical household after a busy day of work.

Lily and Daisy working hard.

Fortunately we have had a day nurse these past two days, so I have been free to follow up with the doctors,therapists and equipment vendors. Like the title states, everyone needs a new prescription. Either to change a med, add a med, restart a therapy, or to order a new piece of equipment. I’ve also been able to track down the two new “Over-The-Counter” medicines we added to the list. The last step of this process is to meet with Lily’s nurse case manager to document all of the changes – hopefully tomorrow.

Today Lily got a haircut (Thanks Jess!) and it was also the first day of Homebound instruction. (Thanks Ms. Palmquist!) Lily will be staying home for another week before she heads back to school.

In addition to getting everything sorted out with Lily since we’ve gotten home I’ve had to troubleshoot a variety of household issues. Since coming home last Friday I’ve worked on the garage door, a ceiling fan, the furnace, and the clothes washer. I’ve tracked down and ordered parts for the fan and the washer. The garage door and furnace are currently working but may need some additional TLC by “future” Todd.

This afternoon I was able to sit down, do some research, and order a switch interface and two adaptive switches to allow Lily to interact and hopefully communicate with us. I also picked up some parts to build some battery interrupters that will allow us to adapt simple battery operated devices to switch access.

I’m looking forward to getting this setup working for Lily, but I’m not sure whether we are going to use a Chromebook or a Windows tablet. More research is required.

Jess and Lily post-haircut

Signing off for now.

Well with the weekend over it is time to get back to work. The list of items I was hoping to accomplish today is going to be slightly complicated by the fact we don’t have a day nurse. (sad trombone) Miscommunication happens, but I spoke with the scheduler and we will have a day nurse the rest of the week and she is already trying to figure out how to make up the hours for us.

One of the first things I worked on when we got home was Lily’s stander. While we are still going to limit her time and angle in the stander until we can get her orthotics figured out, it is important part of her day so I adjusted it first thing.

Pain management is still a priority, she has had Tylenol around the clock since surgery, though we have been cutting back on both the dosage and frequency. I couldn’t figure out what was bothering her this morning, but then it dawned on me. Time for Tylenol!

 

 

With Lily’s weird sleep pattern this weekend she only had a single dose of her Ritalin, but I’m going to make sure she gets both doses today. I’m going to keep her awake today, so she can sleep tonight! Speaking of sleep I am back to my more typical 6 hours or less a night, so at least that is back to normal. 🙂

Fortunately Bryce is home from school today observing the sacred holiday that is Columbus Day, so he will be doing what he can to keep us awake.

 

 

Signing off from Home.

Lily's bed these last couple of weeks.

and the driving, unloading and unpacking. Lily is already in her wheelchair and Nanny took her downstairs to visit one last time in the therapy center while I wait for the nurse to bring me the final paperwork.

We look forward to getting on the road and getting home! Thanks for watching!

Signing off from KKI

 

So what did Lily do this afternoon you ask? She just hung around while we tested slings and figured out how to use the Hoyer lift.

This sling is too big and feels like a hammock.

Not everyone who works with Lily feels like picking her up by themselves, and I cannot always be around to do “Lily-ups” so we need to make sure that anyone who needs to can safely use the lift. KKI checked with the surgeon to make sure it was safe to put her in the sling (it is) and we worked together this afternoon to identify which size sling is best suited for Lily.

Oddly, the documentation only differentiates the sling sizes by how much weight they can carry, and not how tall the patient might be.

The “small” size sling can carry Lily's weight with no problem. But it's so short half of her body is hanging out of it.

In the picture, Lily is in a “large” sling. It's so big I could use it. So like Goldilocks we are still looking for a sling that fits “just right”.

Unfortunately KKI did not have a “just right” sling in stock (medium) that we could take with us, but we can use the large sling for now until we could order a more appropriately sized sling from our equipment vendor.

Afterwards LIly went downstairs and won a few rounds of Uno – that girl is a good luck charm when it comes to board and card games. 🙂 While Lily was eating I was treated to about 20 pounds of chicken, mashed potatoes, macaroni and cheese, cornbread and cookies brought out to me by friend I haven't seen in 30 years!

Together for the first time since 4th grade!

The last time all saw Suzanne was in 4th grade (so some time in the 80's), but thanks to magic of the internet and Facebook we were able to reconnect. She knows what hospital life can be like, and how good fresh food can help make things a little better, so I really appreciate her taking time out of her busy life to come visit me and meet Lily.

While recovering from my food coma I started to pack up Lily's room. Hopefully we can make a clean getaway tomorrow before lunchtime. I will try to post an update, but no guarantees. See you tomorrow.

Signing off from RMH Baltimore.

Makalya's card to Lily

Good afternoon everybody. Today is the last full of therapies at KKI. Lily is working hard as usual while I am talking with all of the therapists and doctors, finalizing protocols and prescriptions. Our plan is to be home in time for a late lunch, but who knows.
In OT we did more switch work and I talked with the therapist about our switch options. I am excited about the possibility of being able to communicate with my daughter – if even in a limited fashion for now.
In PT we just stretched out and measured her range of motion. Lily was busy down in the Therapy Center though. She played a dice game of “For Get It”, worked on a crown and created a fairy tale scene.
 
So far today, I have touched base with the doctor, the resident, the nutritionist, the social worker, and the previously mentioned occupational therapist. This afternoon I will be working with both the physical therapist and the occupational therapist as we test Lily out in a hoyer lift and go over the protocol to transfer her with the sling.
Signing off from KKI.

Unless I get an early start on the evening posts they tend to be a little short (Sorry for that). We got our sweat on this afternoon, so Lily and I put up our hair to keep it out of our eyes. We went with a double french braid for Lily, while I opted for a simple headband.

Post PT selfie - Lily was expressing her opinion about my hairband.

Because of our EEG appointment we didn’t have time to go down to the Therapy Center this afternoon, but that didn’t keep them from coming to see us. We met Elfie, our fourth therapy dog. She was a tiny dog and climbed up onto bed with Lily. She was so cute, but I think both us are ready to go home to Daisy and the cats!

Elfie chilling with Lily

When I got back to RMH I was greeted with two surprises! The first, a care package from Team Reber and a note from the office to trade in my pillows for brand new ones!

Thanks to the Rebers for the package, I cannot wait to share it with Lily tomorrow and I look forward to sleeping on fresh pillows tonight!

Tomorrow is going to be our last full day of therapies at KKI, so we are going to need to bring our “A” game!

Signing off from RMH Baltimore.