Where to begin....
Since we had Taegan on the drive we broke it up and took 2 days to get there. We stayed in Grand Junction one night each way.
Flying a kite in Grand Junction
In the Eisenhower tunnel.
On our way there he puked all over himself in the car seat. We quickly pulled off the freeway and changed his clothes. On our way home he did the same thing.That use to happen a lot but has not happened in awhile.
It is hard to travel with kids with food allergies because you have to bring a lot of food from home with you and the cooler and you're not sure what you are going to find along the way.
We were pleased with the staff at Colorado. We dealt with National Jewish and The Children's Hospital. We met with the doctors individually and together. We were able to see the GI, Nutritionist, Allergist, Feeding Therapist, Dermatologist, and Psychiatrist. We had 2-3 appointments with each of these so we feel we were really able to get some quality time in.
Taegan was also able to participate in an allergenic intestinal disease study where they collected pieces of tissue from the intestines. We felt fortunate we were able to help in any way we could and hope that they are able to find less invasive testing.
This was Taegan'a 5th EGD since being diagnosed last year. It has been a long year with many doc appointments and testing. Just entering a doc's office he starts crying because he is worried they will hurt him. Sometimes they do, sometimes they don't. He would say "bye bye" every time we entered someones room and start crying. It makes me feel so bad because I can't really explain to him what is going to be done.
The Children's Hospital was great. It was different than any hospital I had seen, no wonder it is rated in the top 10. Everyone that entered had to sanitize their hands and when you went into different areas you had to sanitize them again. My type of hospital. I'm kind of a germaphobe. You had to wear name tags w/ a photo. It reminded me more of an airport. Seeing so many kids that are extremely ill makes you grateful for what you have.
I knew some hospitals let you go back with your child when they were put out and this was one of them. I had looked forward to having the chance of holding him. As most things in life, it didn't turn out the way I had hoped. Taegan panicked with all of the equipment and docs around him and I had to physically restrain him along with a few other nurses. I hate times like these. He's only 2 and you can't really explain to a 2 year old what is happening. He's just scared to death.
As soon as the doc came to consult with us and showed me the slides I knew it wasn't good. The white dots are patches of eosinophils that have gathered in his esophagus from eating foods he is allergic to over time. I knew his biopsies would be bad which was the reason we came to Denver but I wasn't expecting them to be that bad. The patches ran the entire length of the esophagus. There shouldn't be any eosinophils in the esophagus. He is still throwing up once in awhile but I'm surprised after seeing these he's not throwing up more.
This pic is of his scope last Jan which was bad. You can see how much worse his esophagus has became in the last 4 months.
After his EGD we had the weekend off to wait for results and more testing the next week. We went to the Denver Zoo and the Botanical Gardens.
Since we had Taegan on the drive we broke it up and took 2 days to get there. We stayed in Grand Junction one night each way.
Flying a kite in Grand Junction
In the Eisenhower tunnel.
On our way there he puked all over himself in the car seat. We quickly pulled off the freeway and changed his clothes. On our way home he did the same thing.That use to happen a lot but has not happened in awhile.
It is hard to travel with kids with food allergies because you have to bring a lot of food from home with you and the cooler and you're not sure what you are going to find along the way.
We were pleased with the staff at Colorado. We dealt with National Jewish and The Children's Hospital. We met with the doctors individually and together. We were able to see the GI, Nutritionist, Allergist, Feeding Therapist, Dermatologist, and Psychiatrist. We had 2-3 appointments with each of these so we feel we were really able to get some quality time in.
Taegan was also able to participate in an allergenic intestinal disease study where they collected pieces of tissue from the intestines. We felt fortunate we were able to help in any way we could and hope that they are able to find less invasive testing.
This was Taegan'a 5th EGD since being diagnosed last year. It has been a long year with many doc appointments and testing. Just entering a doc's office he starts crying because he is worried they will hurt him. Sometimes they do, sometimes they don't. He would say "bye bye" every time we entered someones room and start crying. It makes me feel so bad because I can't really explain to him what is going to be done.
The Children's Hospital was great. It was different than any hospital I had seen, no wonder it is rated in the top 10. Everyone that entered had to sanitize their hands and when you went into different areas you had to sanitize them again. My type of hospital. I'm kind of a germaphobe. You had to wear name tags w/ a photo. It reminded me more of an airport. Seeing so many kids that are extremely ill makes you grateful for what you have.
I knew some hospitals let you go back with your child when they were put out and this was one of them. I had looked forward to having the chance of holding him. As most things in life, it didn't turn out the way I had hoped. Taegan panicked with all of the equipment and docs around him and I had to physically restrain him along with a few other nurses. I hate times like these. He's only 2 and you can't really explain to a 2 year old what is happening. He's just scared to death.
As soon as the doc came to consult with us and showed me the slides I knew it wasn't good. The white dots are patches of eosinophils that have gathered in his esophagus from eating foods he is allergic to over time. I knew his biopsies would be bad which was the reason we came to Denver but I wasn't expecting them to be that bad. The patches ran the entire length of the esophagus. There shouldn't be any eosinophils in the esophagus. He is still throwing up once in awhile but I'm surprised after seeing these he's not throwing up more.
This pic is of his scope last Jan which was bad. You can see how much worse his esophagus has became in the last 4 months.
After his EGD we had the weekend off to wait for results and more testing the next week. We went to the Denver Zoo and the Botanical Gardens.
Taegan really enjoyed having Chris around for so long. Most mornings we found Chris's shoes like this.
More prick testing.
Waiting for an appointment
We were told after we arrived that they wanted to do a PH probe. I had never heard of it and it didn't sound fun. Not that it is a huge deal but for a 2 year old who doesn't know what is going on and is sick of being poked putting a tube down his nose and staying in the hospital for 24 hours was something I was dreading. We called our hospital back and home and they also that the ph probe and that is IN-network with our insurance where National Jewish isn't so we made the decision to do it at home. We will most likely be doing that in June.
The way dads do diapers.
End Results:
We had a very memorable experience at National Jewish + Children's. It is tiring and an emotional roller coaster at times but the staff is great and willing to help and answer any questions. We found out Taegan's biopsy results were worse than they have ever been. His counts were high and his esophagus was very inflamed. That could be part of his texture issues and the reason he's choking and throwing up food. Since leaving he has started throwing up more. He tested positive to foods he had passed before. Beef, chicken, and lamb. The plan now is to eliminate those foods (which he wasn't having much of anyway because he couldn't handle texture) and scope in 2 months. It would be a miracle if that worked but I'm betting it's not that easy. I have a feeling it is more than that but I guess we will see.
We are also working on his texture issues. We have to back up to move forward because he has missed some important steps in learning how to chew and swallow his food correctly. We will give him more pureed for for awhile and slowly work towards the more textured foods.
We are also starting Flovent for the next month or two to help heal his esophagus. We were finally trained and given Epipens. They couldn't believe with his peanut numbers no one had given us one before. We were hoping to pass garlic but he reacted just a big as before. Garlic is one of the hardest things for us. You would think it would be milk or eggs but garlic is in so many things and i have substitutes for milk and eggs.
TOGETHER AGAINMy mom volunteered to watch Kadence while we were gone. It was nice to have some time with Taegan alone and it was nice to not have to worry about Kadence either. I did miss kissing all over her but she was in good hands. Thanks mom.
