Wednesday, September 8, 2010

All by myself...

don't wanna be
all by myself
-Celine Dion, All By Myself

Actually, Jay DOES want to be "all by myself." He's starting to turn back into a two year old -independent-minded, determined to do it his way. It's a wonderful sight to see that he wants to stand up on his own. It's just not so wonderful to see him trying to stand up in his bed. Or in the wagon as it's rolling down the hallway.

His fine motor skills are absolutely back to where they were before all this started. He's hammering away with an accuracy that would impress most professional carpenters. He is still a master with a screwdriver and is currently gripping the saw with a pair of pliers, and then using said saw to "cut" the handle of his toolbox. Occupational therapy has been so impressed that they no longer want to work with him every day. One less thing!

The large motor skills are still coming back a little more slowly. He's trying to climb and stand and jump and walk totally by himself, but he's struggling to do those things. He's just a little too wobbly to do it alone, but isn't too happy having to hold our hands. I am terrified of him falling and busting his head. Every day he improves a bit, and we trust that in good time, he'll be back to doing all of those things independently, too.

Our biggest issue right now is with his tummy. Before surgery, the kid had a freakin' enormous appetite. He would routinely eat more than I did, and he ate a huge variety of healthy foods. But he just isn't interested in eating anymore, even things that were his favorites. He's got to get enough calories for his overtired heart to continue its recovery. We are doing all kinds of happy dances to celebrate every bite of french fry or chicken nugget that he eats. (There are different dances for different foods, ya know.) And then after counting every calorie and every ounce of milk, he pukes it all back up when he gets upset over some doctor coming in and offering to remove a bandaid. Fantastic.

We'd been a little concerned about his ability to swallow, which earned him the uber-fun swallow study during naptime today (and he was so not tricked into believing that chalky-tasting barium was milk!). A week after being on the ventilator, he was still coughing when he attempted thin liquids. He had been drinking his liquids with thickener, and surprisingly didn't seem to mind. But the swallow study showed that everything is totally normal. Yahoo! So, now he can eat what he wants including regular liquids. If only he wanted to eat something...

The worst part is that he is regularly yakking up his meds, of which there are many. Tonight we spent the better part of an hour cajoling and convincing him to take his medicines in tiny little sips. (Don't want to force them down - cause that just causes puking.) Just as he took the last one, up came his entire dinner and all of those medicines we worked so hard to get down. I seriously think I saw Derek knock his head on the wall in frustration. So, then we got the fun of doing it AGAIN!

This time, we decided to hide it in applesauce. I gave him the awesome line "You have to eat the applesauce so you won't be hungry during the night!" He totally sees through every trick we can come up with, and was well aware that there were drugs in the applesauce. Oh brother. I then spent an hour and a half trying to get him to eat 10 bites of applesauce (which were hiding the 8:00 meds AND the 10:00 ones!). Just another opportunity to practice patience, I guess.

Thanks to all of you who posted funny, interesting, or informative comments here and to those of you who sent email distractions today. I can't imagine trying to go through this without the support of family, friends, and internet strangers who are praying for us and pulling us through.

15 comments:

Mindy Marshall said...

Had this brilliantly witty comment all typed out and blog wouldn't let me post it . . . said the "service was unavaiable". So instead of that, you get this . . . love you and miss you. We continue to hold you all close to our hearts in prayer and are rejoicing over the consistent improvements Jay is making.

Anonymous said...

It's a strange question but is Jay's palate higher than it used to be?
Hear me out...... Grace had a spell of not being able to eat cereal when it was mixed too thick or too thin; it had to be "right." She would gag on a bite(1st, last, 3rd, who knew) and here came everything. We wondered if food was getting caught in the roof of her mouth and triggering the gag reflex. Since she was intubated for several weeks, we wondered if the pressure from that tube raised her palate. (Its' really high & narrow, giving us fuel for our thinking.) The Dr.s agreed that it was a "very plausible idea" but of course didn't commit to any one answer. Maybe we were right.
Maybe Jay is having similar issues. Maybe not, but look at his mouth & see what you think.

amy

Sush said...

Good Morning, Mon Petit!
If you are still in need of reading...ck out the posting on the blog The Willows Home and Garden *link can be found on mine...about 'Women Who Inspire:Anne King of dos fannies'.
I just found it kind of funny that those words were used in the same phrase...women who inspire and dos fannies. It's actually a cute story of a jewelry designer and she says she and her partner sit on their ass all day to work...but it goes into more depth. If you wanna read more about her, not her ass in particular. Name of her business...dos fannies. That entire train of thought reminds me of Steve Jr saying he never thought he would use the words battling hamsters in the same sentence...as in Khung Zhou- Zhou Zhou pets! I digress...
I wish I had inspiration on how to interest Jay in food. Not that a tonsillectomy is anywhere in the ball park of heart surgery, but I do remember how sore my throat was after. My Mother told me I wasn't going to be able to leave the hospital after my tonsils were removed unless I ate something and as I wasn't a fan of the hospital I slowly increased my bites. Shall I find some cookie cutters in the shape of tools and send them up? Perhaps he would eat food in the shape of his favorite gizmos! I gotta say though, I sympathize with Jay, I mean if puking is the next step after eating it is sort of a turn off. So maybe I just need to stick to the dos fannies territory since I am a few years past raising children.
Back to reading, another many faceted read is Babble-The Magazine and Community for a New Generation of Parents...again link can be found on my blog. I just try and keep up with you 'new generation' folks as well as I can. Just putting blog reads out there in case you can't run out to a book store...!
Love to all...and hoping this was a good distraction, if not so great advice...xoxox

Anonymous said...

Could the puking have become a conditioned response, as in Pavlov's dog, because of what he has to endure daily procedure wise or something else...reacting to the situation...just a thought. Praying for this to all work out and thankful that his swallow test showed nothing abnormal.
Lynette

Anonymous said...

My family & I will continue to pray for all of you. When my granddaughter had her Chiari surgery, it was finally a soft taco that got her to eat enough to leave the hospital. At Duke Children's Hospital, they gave patients tickets for each lap they walked around the ward, to be redeemed for prizes. She started out crying all the way around, but it got easier. Maybe tickets for each bite?

Here's Gracie Allen's recipe for Roast Beef

1 large roast of beef
1 small roast of beef

Take the two roasts and put them in the oven. When the little one burns, the big one is done.

Debbie Gilland

ANAPatterson said...

Hey guys. Been thinking about you guys. I hope Jay will get hat appetite of his back. I know sonmeone said to eat lots of little bits of stuff often be it a bite of cheese and five minutes later a bowl of dry cheerieos and little bits out and about they can grab from as they play and want onibble and over time it will stay down and give him the nutrients as you go. Good luck will keep us posted.
hugs and Prayers!

Anonymous said...

Hi - I found your blog thru a church friend. My daughter, now 3, has had the exact same surgeries as your son, and a few more to boot. She had everything done at UNC. She is on her 2nd mechanical valve and has been on coumadin since she was 4 months old. We have spent far too many months in the hospital in her short life. I know how difficult it is to have one child in the hospital and another child (or 2!) at home.

Julia never, ever ate at the hospital. Once she returned home, her appetite was fine. She also would puke up her meds regularly. We started mixing them with crystal lite powder to get them down. She takes her coumadin with no problem. Once you get the hang of monitoring the INR, it really is no big deal.

Just wanted to let you know that I have been there and I know how hard this is. You will be home before you know it and this will all be a distant memory!

Kimberly Diokno
kdiokno@gmail.com

Anonymous said...

Such good advice from everyone, and unfortunately, not being a mom yet, I don't have any wisdom on keeping Jay's food down. But the small bites and prizes for eating sound like a good idea. They would work for me! (Not that I ever have any trouble eating... it's my favorite activity) Will continue to send prayers and hungry thoughts from CO. And BTW, the comments from the last blog entry were hilarious! I want to meet this Austin character who is the fastest boy in the world. ;-)
LYTB,
JB

TOJ said...

Friends,
You might try hiding his meds in something with a bit stronger flavor than applesauce and something opaque so he can't see the meds. Maybe? I'm thinking pudding or yogurt...maybe a tart one like key lime pie. It's worked at the Bellizzi's in the past.
I'm also the world's best at making super high calorie shakes, although you might not know it from all the chicken legs running around my house, so, if you're interested I'll send you a recipe or two.
I'm not sure I have any sage advice about Jay's vomiting but do wonder if it will take time for his little body to "forget" the vent.
Things must have been tough last nite for Derek "calm in all situations" Foster to bang his head in frustration! YIKES!
Love to you all,
TOJ

Anonymous said...

Jen,

When Alyssa was one she had a barium swallow study and flunked it. She was aspirating everything. I am glad that Jay passed and I will continue to pray for him. I really hope that the he gets back to normal with all the food. I hate giving my kids meds so I don’t have any good advice with that one.

Dee & Bob Derr

Anonymous said...

PS To those of you who were asking about how to help the Fosters... Since I can't help Jen, Derek, and Jay directly, I am helping other families by volunteering at the RMH here. There is a RMH by Duke hospital in Durham and they always need volunteers to cook meals or even just check in new families! http://www.ronaldhousedurham.org/

Anonymous said...

I like your friends idea of volunteering at the RMH. My sister, who loves to cook and is such an excellent cook, might like to do that. Nice of me to volunteer someone.
I am sorry Jay is having such a hard time eating and keeping things down. I can relate from pregnancy days- I guess that wouldn't be Jay's reason. I am reminded of trying to give Holly (our dog) pills. She was much smarter than us and ate the food concealing the pill and left the pill perfectly intact.
Have you tried smoothies (I write thinking you probably have)? Can they make some of the meds as liquids with good tasting flavors? Who could resist that? .
In time things will get better, but it is hard right now. Much love and prayers to you and for you that things will resolve quickly.
Love,
Aunt Ali

Anonymous said...

Here's a website you might enjoy for recipes. mealsmatter.org. It is a website from Duke and enables meal planning. I looked at it last night, but couldn't navigate it too well. You may do better than I. Also, Jay likes Yogurt. He liked my Yoplait Apple Pie.
LY
Aunt Ali

Anonymous said...

Hi Jen,
What wonderful news! I am so glad that Jay is getting back in the swing of being a 2-yr-old! Thanks for keeping us posted. Your blog is like reading a book--can't wait to get to the next page. You are such a good writer. You, Jay and family are still in our thoughts and prayers. Take care.
With Love,
Pat and Maurice Evans

Amy said...

Hey Fosters!
At the end of my meatloaf story yesterday- I promised a recipe for BBQ cupcakes, so here it is. It's actually one of my favorite meals to cook and eat, because it easy and YUMMERS!!
BBQ Cupcake
1 1b of meat (ground beef, chicken, ham, turkey, etc)
1 can grands biscuits
1 bottle of yummy bbq sauce
sprinkle of dried minced onions (if you like)
Shredded cheese

Brown your ground beef or heat up other chunked up meat in a pan. Sprinkle with dried onions. Once cooked, pour a healthy amount of bbq sauce into the pan. You want it covered well, but not swimming... Let simmer while you assemble "cupcake"
"Pam" your cupcake pan. Stretch out your biscuits just a bit and place them in the cupcake pan to form the "cups". I use a 2 tbl scoop to scoop meat mixture into each up. Sprinkle with cheese. Bake 350* for @ 15 minutes or until biscuits are golden brown. I have used leftover ham, turkey, bbq chicken, etc. I have also switched out the bbq sauce for Mamwich. It's the right consistancy and has some veggies secretly packed in there.
Prayers for continued healing and streghtening of Jay. And prayers for strength and rest for Mom and Dad!
Take Care,
Amy Kunkle