~O~M~G~

I know, I know. It's been ages since my last post.

Waylon found the link to the blog and read it and asked me why there wasn't more. I said I just didn't take time to do anything with it. He said you need to write more on there mom. So, here I am.

Waylon has done so well since transplant over a year ago. He is maintaining his weight and no signs of rejection!!! Yippee

We have done so many things in the past year and a half. Make-A-Wish(check them out here: http://www.wish.org/) sent us to Disney World and we had SOOOOO much fun! The boys, me and mom flew down and Aunt Jan and Marilyn drove down to experience it with us. It was awesome!! I am ready to go back LOL

In July we went to Ocean City, MD with the Believe in Tomorrow program. Check them out here: http://www.believeintomorrow.org/. A WONDERFUL organization!!!! We did so many new things and the boys made some wonderful memories.

Both of the boys are in school now, Waylon is in 3rd grade and holding his own, he is a little lazy and his grades were starting to reflect that, but he seems to be picking back up. Jeffrey is in pre-school, and HATES going. He just wants to stay home with Mommy all the time. However, Mommy has went to work part time!!!

It isn't anything glamorous, but it gets me out of the house and around other adults!!!

This is our update in a nut shell. I am going to try and keep up with this from now on. And now that Waylon has had his transplant, I can talk about more things.

Many thanks and prayers for you all!

Shelly

This isn't the first "after transplant" picture I took of Waylon, but I can't seem to find that one on the computer. This was the day that they took Waylon back into surgery to close his belly up. One step closer to getting out of ICU!!! See how good he looks - minus the tubes and such?

And of course, if Waylon was going into surgery, the ever present Mr. G must go too. Notice the wrist band he has on to match Waylons? LOL

This was about a week and a half later, when Waylon was moved into the "step down" ICU unit. He and Jeffrey were playing with Mario and Toy Story toys! Two of their favorite things :)

And here he is when we got moved back to our "home away from home" 7B!!! He was much happier and at ease back on his regular floor with his regular nurses. He seemed to do better.

Here is Waylon's belly. He had a total of 27 stitches. Also showing is his new ostomy, G-Tube and 2 drain tubes. His scare looks like a railroad track. And I think it is so neat that they go around his belly button. Our motto is *chicks dig scars*!!!

Here we are on our first excursion to the OUT SIDE!!!!!!! We went to the patio off of the cafeteria and listened to a band. He really enjoyed it.

Oh, what can I say about my absence? I've been busy!

We got the wonderful call on August 13, 2010 We have new parts!!! Waylon didn't want to go, because the birthday party was the next day. I talked him into it. We made the LOOONNGGG drive from middle-of-nowhere WV to Childrens Hospital of Pittsburgh. We were admitted and then the wait began. We got to the hospital around 3:00 pm, and waited, and waited, and waited. Shortly after midnight, there was a knock on the door and in walked the nurses with a birthday banner and presents for Waylon's birthday. This group of girls are WONDERFUL.

In the wee hours of the morning, we were told it was time, the harvest team had gotten the new intestines and they were great looking, so it was prep time for surgery. Blood work, x-rays and all of those things. We went to the pre-op holding room, and were waiting. I kissed my baby a hundred times and told him that I loved him, he just went to sleep LOL So when it was GO time, I watched them wheel my sweet son away, he was snoozing, and I was having a break down. So lucky that my mom and Aunt Jan were there to hold me up. :)

We went to the waiting room and WAITED. About 12 hours later they said he was out of surgery and in ICU so we could go there and wait. Got to that waiting room and waited another 3 hours. 15 hours since I had seen my baby and I was going crazy. Finally, I think the nurses felt sorry for me and let come back to him, even though they weren't completly set up. He looked - great! Minus all of the tubes going in and out of him. What a difference from when he was in ICU after his malrotation.

This is just the first day. . . I have many more to tell. But Mommy duty is calling me.

~ ♥ Randomness ♥ ~

It's hard to believe that in less then a month my baby boys will be having birthdays. They will be 7 and 3. Waylon will be 7 on August 14th and Jeffrey will be 3 on the 16th. UNREAL how the time has passed so quickly!!!

We are planning a Super Mario Brothers birthday party. The boys are really excited. They have costumes and are SO CUTE in them!!!!

We haven't gotten into much this summer. It's just been too danged hot! It's been pushing 100 some days and awful humidity, and every since Waylon has been sick, he can't handle the heat very well.

Just about every evening after dinner we take our "rhino" out for a ride up the other 'fork' in the road we live on. We have seen some interesting things along the way. Like:

Yes, that is a bear track next to Waylon's foot!!!!

A softer kind of wildlife!!!

An abandoned house.


A fungus among-us.

And some pretty wild flowers!

Waylon did have a clinical appointment this month, and he actually made it to it!!! He hasn't been to one since April, he has been sick and inpatient every month so there has been no need to go for a clinical. So, I am very happy to say we made the trip to Pittsburgh and back last week!!! He is still holding steady at 49 pounds, I sure wish we could get him to gain some weight and keep it on. I was happy to hear the doctor say he was "spectacular." He said he was a very healthy short gut child! Very good music to my ears!

I have a tendency to over think, and over worry and over stress about everything, so this made me feel a tiny bit better! I did have a list of questions to ask, one of which was generated from "test tube babies" and the cloning of sheep. If those types of things can be done, why can't we create some small intestines for children like Waylon. This got an eyebrow raise from the doctor and he said, they are already working on it! This prompted me to come home and start looking for stuff online. I can't find much information of Stem Cell research and Short Gut Syndrome, but I found a few articles. The doctor did say it was in the VERY VERY early stages. So it is something to keep an eye on. Hopefully Waylon will get his transplant before then, but I hope and pray that it can help save the lives of MANY MANY of the short gut children to come!

I took a self portrait and I really like the way it turned out. . . Wanted to share it with you all. Have a wonderful day!!!!

Just some basic information

So once a week I get a delivery from Waylon's home health company with all of his medicine and medical supplies. On a normal delivery, I get 7 bags of TPN (Total parenteral nutrition (TPN), also called hyperalimentation, is the practice of feeding a person without using the gut. It is normally used during surgicalrecoveries. It has been used for patients in coma, although enteric (tube) feeding is usually adequate, and less prone to complications. Chronic TPN is occasionally used treat people suffering the extended consequences of an accident or surgery. Most controversially, TPN has extended the life of a small number of children born with nonexistent or severely birth-deformed guts.) along with 3 smaller bags of Lipids (another word for "fat"). Various needles, alcohol wipes, all of the additives I add into Waylon's TPN - I have 5 vials of vitamins and additives that I add in every evening when getting it set up. Waylon has a backpack that holds his TPN and the pump that runs his TPN through him and keeps him going. My wonderful Aunts Jan and Marilyn bought me a mini-fridge to keep Waylon's medicine in. His medicine was taking up all the space in our regular fridge. ♥ Aunt Jan and Marilyn!!


This is one drawer in my 6 drawer dresser that holds medical supplies. This is ostomy supplies.



This is a pouch ~front and back~ a wafer, that stick to Waylon's skin, and a belt that attaches to the pouch and holds it on.

This is a sample of the items I put into the "medicine" bags I make up every week to get ready to make up to get Waylon's TPN up and ready for him at night. There are 2 additional additives that have to be refrigerated that also go into the medicine bag.

Usually after the UPS makes their delivery on Tuesday evenings, I get all the things that need refrigerated put away and then once the boys are asleep, I make up "medicine bags" with all of the items I need to get Waylon's TPN mixed up and ready to go every evening. I hook him up at 8:00 pm, and he is hooked up for 16 hours - until 12:00 the next afternoon.

It's a lot to keep up with and a lot to try and keep straight. I would never have thought I could do things like this, but a Momma does, what a momma has to do!

The story continues. . .

So on February 16, 2009, I was taken out of my son's ICU room, by 3 nurses. And they started to intabate my tiny little boy and he coded on the table right there in front of them. Luickly they worked and got his little heart beating again. I was taken to the surgical waiting area and a Chaplin and a Social Worker sat with me while "miles away" the surgeons were cutting into my baby boys body. I was so wracked with guilt and anger and sadness. I just wanted to hold him. I wanted to be in the room with them holding his hand and telling him it was all going to be ok. Didn't the doctors know that he needed me there to help him? After what seemed like days, my parents finally showed up. We all cried together for a little while. Then the surgeon came out and got us and told us how bad it was. He had had a "malrotation of the bowel with a volvulus" HUH? Yeah that's what I said too.

"in a condition called volvulus, the bowel twists on itself, cutting off the blood flow to the tissue causing the tissue to die. The symptoms associated with volvulus, including pain and cramping, are often what lead to the diagnosis of malrotation."

"Obstruction caused by volvulus is a potentially life-threatening problem. The bowel can stop functioning and intestional tissue can die from lack of blood supply if an obstruction isn't recognized and treated. Volvulus , espically, is an emergency situation with the entire small intestine in jeopardy."

So Waylon's stmoach was cut open right down his little belly, the doctor did cut around his belly button. They took out the portion of his small intestines thet they knew was dead, and left some that they were hoping would pink back up and live. They left his stomach opened and just packed it and covered it.

I was taken out of his room around 11:00 am about 4:30 that evening, his dad and I held hands and walked into a nightmare.

My son was bloated, hooked up to monitors and tubes and needles and wires coming out and going into every hole they could find. He was so bloated he looked like he was about 12 years old. Some people wouldn't have recognized him I don't think. Oh My it was an awful experience. I relive it in my dreams a lot.

The doctors did not expect him to make it through the night. But his momma never gave up on him. Not once did I ever think that my baby boy would leave me. I knew he had fight in him. I knew he would stay with me. He was to stubborn to leave me!

He fought hard and stayed that first night. He did a lot better then they expected. That night, and the rest of the days to follow. On Wednesday, they went back in to see what they could save, if anything. And they couldn't save much. So Waylon has between 10-15 centimeters of his small intestines left. He has an Ileostomy: "a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the ileostomy and is collected into an external pouching system stuck to the skin."

That is just one hurdel in our journey as a short gut family. There are more to come.

The Story of A Cat

My grandmother was a wonderful woman and I miss her dearly. She got a cat in 2001, Toby we named him. She called him Toby my boy. Gram always wanted boys. She wanted my mom to be a boy, she wanted me to be a boy and when Waylon came along. . . . .she was on cloud nine!!!! He was HER boy. Gram passed away in January after Waylon turned a year old. Her last words to me, before I walked out of her hospital room, I knew I would never see her alive, were, "take care of my boy." I'm trying Gram, I'm trying!



After Gram died. Mom and Dad moved into her house, and I bought a trailer and moved in next to them. So we are neighbors, and I am so thankful now that I have them close by to help me with the boys!



When Waylon got sick and we spent the 6 weeks in the hospital, we came home from Pittsburgh on March 13th and Toby, who had never stepped foot into my house before, came into the house and made himself at home. He stays every night with us, and sleeps in bed with me, he comes, gets on my head until I fall asleep and then moves to the foot of the bed. Everyone says that Gram sent him to look after us.