Well, it has taken me quite a while to post our second day at Primary Children's...I've been a bit overwhelmed.
Our kitchen was a mess for a couple of days after we returned. There's so much stuff...medicine, supplements, scales, recipes, spatulas, ketone test strips, specific foods, specific sunscreen, shampoo, soap and wipes. These pictures were even before I went shopping on Saturday. I came home with plenty more :)
So, on to day 2. Ben ended up sleeping for approx. 7 1/2 hours that night. He slept through most of the every two hour interruptions. I, however, did not. I think I got about 4 hours total...which is better than it could have been. Ben started asking for food soon after he woke up. I tried to distract him with cartoons thinking they would bring his tray in soon. When it didn't come I asked the nurse when it was scheduled. She told me it wasn't going to come for another hour. Yikes! I had a bit of a grumpy boy on my hands so I had to think of something. I asked if we could go for a walk. In our jammies we roamed the halls of the hospital. A nurse helped us find a live fish tank. Ben enjoyed it for a couple of minutes and then was ready to move on. We went and saw the big fish on the track behind the elevators and then I spied the wagons. I had been hoping to have a chance to put Ben in one of the red wagons the hospital had available. I thought he would absolutely love a ride. I plopped him in and he immediately began protesting. Thinking he would calm down when he started moving, I proceeded to pull the wagon. We didn't get far. His crying increased and we were getting looks from people around us. I had envisioned getting loads of cute pictures of my little buddy in the red wagon but I gave up and continued carrying him down the halls. Much to our delight, we found an electric train at the end of one hall. Ben loved it He got so excited every time it would come around to us.
|These pictures are actually from later in the day when Andy took him down again. (I had to explain why he wasn't in his pajamas.)|
After a couple of minutes he had a staring seizure so I carried him back up to our room. There was his breakfast on the table but it would have to wait. The nurses came in and hooked him up to the monitors. His oxygen was low so they gave him some and he slowly came out of it. As he was recovering the attending neurologist and several other people came in to talk to me. They told me that everything looked good...his blood sugar was just a little low so they would look at that one more time and if it was good we could go home! Wow! I was not expecting that. Nor was I ready for it. I didn't feel competent in the diet at all. I decided that when Andy came I would take a break and go through all of the material and write down all my questions to be answered before we left.
I snuggled with Ben on the bed and he fell asleep.
He slept for quite a while and I was quietly able to get some things done. After about an hour and a half Ben woke up and I gave him his breakfast that he had so desperately wanted hours before. They came in to take his blood and that was not a pleasant experience.
One of the techs gave Ben a little, yellow, bendy guy to keep him happy while she worked with him.
More play time on the hospital bed.
When Andy arrived we both took him for a walk to see the fish...again :)
I was able to sneak in a shower and then took all my reading material down to the cafeteria. (I must say that the cafeteria there is very superior to our local one.) The little packets of hummus and pretzels were my fave. I took my time and wrote a long list of questions and a long list of things we needed to buy. When I returned to the room I talked on the phone with the woman that was working with us and she told me that pretty much all of my questions needed to be put to the dietitian. Well, even though my questions weren't answered for the most part, simply reading over the material and writing things down organized it in my mind and I felt a little better. We were ready to be discharged.
A package came for Ben!
|He's singing the Elmo song in this picture :)|
He was thrilled!
One more vitals check...
And then we patiently waited...
for them to come take the stinkin' needle out of Ben's hand :)
Another painful moment :(
We finally made it out of there after we filled some prescriptions, signed the discharge papers, and had our meals for the rest of the day prepared and packed. We stopped by The Sweet Tooth Fairy and picked out some cupcakes...it was my first time and it was so fun :) Then we drove to Sandy and picked up some KetoCal that another family had left over from the diet.
I told Andy on the way back to Park City that I felt so relieved to be done with the hospital but then kept realizing that things had only just begun. There is a weight on my mind.
Ben is handling the diet well. He had very little to adjust to. (It turns out our portion sizes the last couple of months have been pretty close to the real thing.) Andy and I are the ones that have had our lives drastically changed. Our focus for so much of the day is on the diet...meal prep, feeding, testing urine, giving meds/supplements...so time consuming. I know things will get easier as we go. I just need to be patient.
So far, there has been no change in the seizures. Some kids are affected immediately while others take a couple of months to see improvement...and there are some that see no benefit at all.
We'll be paying close attention to see if it has any impact on Ben's seizures...especially his myoclonics. Those are the ones we're trying to beat with this thing.