A Day in the Life

Jake got his feeding tube out today so the arm brace also went away! It wasn't planned, but he threw up this morning during speech therapy and it was determined they would just take it out. I was so excited to walk in and see his whole face free of tape and tubes!

I thought I had mentioned this in a previous blog this week, but now realize that I didn’t.  We are of course very excited that Jake has moved to the rehab floor and has started the OT/PT/speech therapies, but as you know from my recent posts he’s going through a tough time right now, so Todd and I are taking turns being at the hospital in 24 hour shifts. We are switching places each day around 2:00 pm.  We aren't sure how long this will last, but for now we feel that this is necessary even though it’s pretty taxing on both of us. We have a sitter (provided through the hospital) that is helping us with the overnights, but one of us will always be there when he gets emotional and cries out for his mom or dad.

Even with all of this, it's really hard on Jake that we both aren't there. Todd was at the hospital earlier today and I got a very teary phone call last night and again this morning from Jake telling me he missed me and wanted to know when I was coming in. He does the same thing when I'm there and Todd's home. It's really hard on both boys getting only one parent at a time.

Here is what an average couple of days looks like: 

6:30 am -- Get up at home with Luke, get him off to day camp, try  and get some work done, deal with phone calls regarding insurance, Jake's care, etc. that can't be handled while at the hospital.

2:00 pm – 3:30 pm– Arrive at hospital, talk with Todd before he leaves, spend time with Jake, play tic-tac-toe, help him go to the bathroom, get him out of bed and into his wheelchair, get him a drink, answer repeated questions such as "When will Dad be back," "When is Luke coming," "Do I have to go to therapy".

3:30 pm - 4:15 pm -- Go to OT/PT, field several repeats of "Can I lay down," "Can I take a nap when I'm done," "When is therapy over".

4:15 pm - 5:00 pm -- Go for a walk, try and keep Jake distracted and up in his wheelchair for a good 45 minutes to build neck and back strength.

5:00 pm - 7:00 pm -- Dinner, bath, entertain. Goal is to keep Jake awake so he sleeps better at night. May have a visit from Luke or other family member. Reading, tic-tac-toe, answering repeated questions such as "When will Dad be back," "When is Luke coming," "Can I go to sleep, " "Are you staying tonight".

7:00 pm - 7:30 pm -- Sitter arrives and we discuss Jake’s current status.

7:30 pm - 8:30 pm -- Get Jake ready for bed and try and help him get to sleep. Answer repeated questions. Generally sometime during the evening, he gets really emotional since he's so tired and wants to know "Why did this happen to me, I didn't do anything," "When can I go home and sleep in my own bed," "Why can't I be a normal kid," "I forgot how to walk".
8:30 pm - 10:00 pm -- If we're successful in getting him to sleep, I leave and go to the lounge to write blog, catch up on phone calls, check email, etc. If not, I help try and soothe him to sleep.

10:00 pm - 6:00 am -- Intermittent sleep for both of us. I let the sitter handle the first few "Mom's" but if he calls a third time and sounds more distressed, I get up to soothe, usually anywhere from 2-5 times per night.

7:00 am - 8:30 am -- Sitter leaves at 7:00, order Jake breakfast, get him dressed and try and keep him from falling back asleep.

8:30 am - 9:00 am -- Load Jake into his wheelchair and head to speech therapy.

9:00 am - 9:30 am - Back to bed, entertain, answer questions, try to keep him from falling asleep.
9:30 am -10:15 am -- Load back in wheelchair and head to OT/PT.

10:15 am - 1:00 pm-- Back to room for rest until next therapy. Family member arrives during this window for a 2 hour reprieve. Talk to Dr's, order lunch for Jake, try and check email, check in with work. When Jake doesn't sleep during this time (which is often), help entertain, answer questions, help him turn from his back to his right side, then back to left side numerous times.

1:00 pm - 1:30 pm -- Load Jake into his wheelchair and head to speech therapy.

2:00 pm -- Todd arrives and we do a quick brain dump of what's happened during the day at hospital and home.

2:30 pm -10:30 pm-- Head home to get Luke from day camp, spend time with him, try to get caught up on loose ends.

10:30 pm – 6:30 am – Get some much needed sleep!  :-)

And then start it all over again ….