As I mentioned before, Wyatt has reherniated (back in early May). He already has three gortex patches in him from three past surgeries of herniation. The most recent surgery, the surgeon was going to use an Alloderm patch (human skin)but their was not enough diaphragm to attach it. Alloderm is living tissue and allows the existing diaphragm to grow through it/around it, but we were told by our surgeon that over time it will break down, but by the time this happens more diaphragm should have grown. However, in Wyatt's case he does not have enough diaphragm to grow. The gortex patches are just not working for him. Our surgeon would like to hold out on surgery as long as possible to allow Wyatt to grow and become stronger. Our surgeon is going to develop a new plan and not use a gortex patch. He may possibly use a muscle from his back which involves a longer and more complex surgery. It's important for Wyatt to grow so that he can have a BIG muscle!! It's hard to figure out when it's time for surgery.... we want Wyatt to grow, but we do not want him to feel uncomfortable. Overall, he is mostly happy with the exception of yesterday afternoon and this morning.. which made me e-mail his "care team"... the pediatrician, GI doctor, surgeon, and nurse. Our pediatrician immediately called our surgeon and responded back to my e-mail a few minutes later. The GI doctor e-mailed back quickly as well (I love our docs!) The consensus was to take Wyatt to the pediatric ER at Hopkins for an x-ray which could lead to surgery. Why? Well yesterday from 1-3pm he was extremely fussy, crying in pain. His face turns red, tears, and sweat. My heart breaks to see him like this. We gave him Tylenol and four hours later Motrin. He calmed down, was happy and laughing, and then went to sleep. This morning, he was not happy again. We vented him and brown emisis came out of his tube (old blood). This is what happened last time when he reherniated. So I thought... well now his unhappiness is out numbering his happy moments so it's time to take him to the ER. THEN... (Wyatt makes all the decisions) he took a little nap and felt 100 percent better. He is back to his old self now. So we decided not to take him to the ER. We have an x-ray appointment on Monday and appointment with our surgeon on Tuesday. I would rather not go to the ER on a holiday weekend when their is just a skeleton crew (plus his surgeon is going out of town). Knowing we have appointments early next week, I feel good about the decision of not going to the ER. I talked to our pediatrician and he said that I am his mom and I know him best so I should decide whether to go or not. I hope I made the right decision. I really want to do what's best for Wyatt and want him to feel comfortable. He is sleeping now... and we will take one day at a time.
Chloe news... Chloe went "pee pee on the potty" again today!! She was so proud of herself! I am going to have to video tape her dancing around the house afterwards! Also, I gave her a BIG haircut!!
My sister created a new website for her photography business. Click here for the main page. Her blog has a cool pic of her jumping in the air! Other good news- Kinley's parents got to hold her for the first time after 36 days ... I remember holding Wyatt for the first time and Claire took her first steps!!! Celebrate!!
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Saying tons of prayer for Wyatt that the appt goes well. Advice from 1 CDH mommy to another and someone who has known over 2000 CDH families throughout the years - listen to your intuition. If you feel the slightest little tug to go to the hospital - go. Rarely is mommy intuition wrong. Saying lots of prayers and will check in next week to see how he's doing and how the appts went.
If you need to talk, have questions you want to ask other CDH families, etc- CHERUBS is here for you!
Dawn
CHERUBS - http://www.cdhsupport.org
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