~ ♥ 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.

Outside work

Our new Fire Pit :) Can't wait to have hot dogs and Marshmellows :)

Jeffrey enjoying the creek!!!!

Waylon enjoying playing in the creek, notice he has on his snow boots!!!! HAHA

This is my rock garden. It's small, I'm going to get a grill and sit in here I can't wait!

The boys playing together!

My mom and I did someoutside work yesterday. I worked on my rock garden and then we built a fire pit. In doing this, we went into the creek behind our houses and got flat rocks and threw them out on theo the bank and then loaded them onto "Stinger" and drove them where we needed them. We let the boys play in the creek. They had a BLAST playing in the water!!!!! Jeffrey was wet from head to toe, Waylon did better, he didn't want to have to change his ostomy and broviac dressing!!!

~~Tired~~

I know I said I was going to be faithful in this blog stuff, but being a ful time mommy is hard. . . LOL We did get home from the hospital last Wednesday on antibiotics for 4 weeks, due to a spot showing on his heart during his ECHO. Doctor's aren't sure if it is vegitation or a shadow, so we treat it as vegitation.

I slept like crap last night. Waylon slept with me last night and wanted me to explain why his intestines twisted. Great huh! So I finished telling him that story - again- and we cuddled and said goodnight and he said "when I die and become and angel, I'm going to come back and talk to Jeffrey all the time, and he will be able to hear me." How's a momma supposed to sleep well after that? I just laid there and cried. He just turned over and went to sleep. It just breaks my heart that he accepts all of this so eaisily. And me, I wish I could just KILL someone on a daily basis!!

I hate feeling like that, I know it isn't healthy for me, and it doesn't make me a "happy" mom for the boys, but I haven't figured out how to work through it yet.

May 15, 2010 ~ in the hospital again

You will have to excuse me, this is my first time doing this blogging thing. I've been thinking about it for a while, and just now getting up the "courage" to try it out. I am sitting here in Children's Hospital of Pittsburgh, with my oldest son for the umpteenth time and need a release for my feelings and emotions. So, I am going to start off with this introduction. It may take a few posts to get it all out, but bare with me if you want to know the whole story of my son and our life with Short Gut.

I am not artistic with my words, but I have a lot to say. To some it may not be interesting, but someone, somewhere, may find a shred of hope in it. I know I have searched for a year now and haven't found anything to help me out, so. . . maybe I can help another mother out there.

I have 2 very wonderful and beautiful boys. Waylon is 6 years old - born 08/14/2003- what a bright shining light he was to me when he came into this world. I was 30 years old when I found out I was pregnant! I never thought I would have children, and WOW was I surprised! Then 4 years and 2 days later -08/16/2007- I had Jeffrey. What can I say about the little imp that can always make me smile? He is the silly to Waylon's solomn. The laughter to Waylon's serious. It's so amazing the difference between these 2 boys. I am so head over heels in love with them both. When I was pregnant with Jeffrey I was so afraid, I didn't have any idea how I would ever be able to love 2 children. I mean I just loved Waylon so much, I didn't think it was possible to have any room left for another one. Oh, but I should have listened when everyone said, it will happen. Because it did.

We had a nice life, me and the boys. Then one night, our world changed forever. A night I never want to re-live and I would never want anyone to have to go through. It was a parents worse nightmare. We had had a nice day, it was Sunday, February 15, 2009, at 9:30 that night as I was sitting in my recliner watching Desperate Housewives. My beautiful little Waylon comes out of the bed room, with his pants down around his ankles, looking pale and ashen, totally disoriented. I asked him all of the obvious questions. Do you need to poop? Do you need to puke? What is wrong baby? And he just didn't know. He just knew his belly hurt. So we went to the bath room, he said he may need to poop, I helped him onto the commode and he proceeded to puke all over the rug. Strange thing, it was exactly the last thing he had eaten, not digested. That fact didn't register to me until MUCH MUCH later on. So I cleaned this mess up and he said I think I need to throw up again, I got him a bucket, and he sat on the commode and pooped but didn't throw up again.

By this time, he was crying, and knowing my son, I knew that something bad was wrong, Waylon had never been a crier or a complainer. So I called my parents who lived next door and said I was taking him to the ER, my dad came to watch Jeffrey and mom went to our local ER with me. We left the house about 10:00 that night. Waylon and I didn't go home for over 6 weeks.