4th EGD

June 9, 2011

We were admitted June 8th at 5:30 p.m. for Rylee's 4th EGD procedure. Her blood labs were drawn and we bowled on the Wii, played in the playroom and took walks while we waited for her counts to come back. It takes an hour for blood results to come back and then the IV is started, which is her absolute worst favorite part of this process. Her platelet count dropped slightly from May 30th from 75,000 to 65,000. Her IV was started around 9:00 p.m. and platelet transfusion got under way. She only received one unit of platelets this time as opposed to the normal 2 units. Labs were drawn again around 5:00 a.m. to make sure her level was high enough to procedure with scope. She went into the scope at 8:30 a.m. with her platelet count at 85,000. Even though this was the 4th go round and Danny and I are well aware of the routine, it is never easy to watch my baby have to go through all of this. I cry every time but try to make the most of it. My parents arrived around 7:30 a.m. and Rylee was so very excited to see them. We walked her down to procedure room at 8:45 and left her at 9:00 a.m. for the scope to begin. By 10:00 a.m Dr. Monagus came out to give us the results. The top of her esophagus looks great. She had to have two varices banded at the bottom (by her stomach). She had some visual signs of infection in her esophagus which could have been from the virus she had a few weeks ago, but they are not concerned about bleeding and will heal. So from GI stand point, she has done very well, exceeded there expectations and her body has been very resilient to these varices. So what started with varices lining her esophagus from top to bottom, the 4th scope is showing great improvement with the top looking like brand new and only two varices at the bottom. She will need to have another scope, but the best news is that it won't take place until August!!! That is 2 months!!!! We started with every 2 to 3 weeks! She had a very loose tooth before the procedure and Dr. Monagus called in the dentist at Children's to pull her tooth while we were there so that in case it was to bleed a lot we were in the best place for that to happen. If you ask me, she looks quite adorable with a missing front tooth. Dr. Monagus came out with her tooth for us and the wonderful Dr. pulled out money to give us to put under her pillow. I teared up and told him he better put his money away because he has done quite enough for my daughter the last few months and will continue to do so. When she woke up she kept feeling with her tongue and had this look on her face like she knew something was missing. She woke up a short while later to ask where Nana and Poppy were and asked about her tooth and then she went back to sleep for a while. They were getting a little concerned about her blood pressure because it was really low. After a while of waking up and moving around it was back to normal.
Dr. Monagus gave us the okay to take her to the dentist for her check up and cleaning since we have not been able to do so with the risk of bleeding and platelet counts. She is going this morning at 11:00 a.m. Thanks to my Aunt Rosana and Uncle Dennis for fitting her in immediately. Uncle Dennis is so busy and is booked up, and this means for him to do this for us!!! Dr. Morales, her hematologist, allowed us to leave last night because her platelets are better. We left the hospital late yesterday evening and arrived home last night. We are all very exhausted but very glad to be in our own beds!

On another note though she does have some other issues arising. We are seeing an endocrinologist now due to some female issues where the stroke is a possible culprit! Please pray that the stroke is all that has caused this and nothing else!!!!! I am in the process of scheduling pelvic ultrasound and testing to take place in the next two weeks. Dr. Vargas seems to be wonderful and Rylee took to him very well. She has not been interacting with the doctors very well now lately due to what she has been going through, but he was wonderful with her and she actually engaged in conversation with him. Besides Dr. Monagus, he might be her new favorite! We are in the process of ordering records, gathering information and setting up consults for surgery. We are getting a second opinion and looking at options, but she will need a surgery. When I receive more information on this I will share.

Everyone has been asking not only about Rylee but about Danny and I. We are doing as best as can be expected. We are trying to maintain our normal lives with work, home, bills, etc. like everyone else, just with added stress! Danny is running around like a crazy person back and forth from work, home, hospital and working on no sleep at times. I am trying to deal with all the emotions of having a sick child with so many different medical issues, the fears, the nerves, the worry, her mental state and all the other motherly emotions. I just can not tell you how lucky Rylee and I are to have Danny. He is our rock. He will drive straight from work off shift to the hospital just to be there to hold her hand while she has blood work drawn or for a procedure. He has been dealing with my crying, my nervousness, my worries and fears and he is handling all of this the way he handles everything.......WONDERFUL! He is there for every procedure, every prick, stick, meltdown, breakdown and all with trying to deal with his own emotions. He puts us first and himself last. What would I do without my wonderful husband who is the most amazing father. We are trying our hardest to stay focused and grounded and keep things stable for her. She can not do much due to her enlarged spleen so we are trying to focus on the things that she can do. Which is swim, swim, swim. Thanks to my wonderful Aunt Sandy, she can go swim whenever she wants at her house, which she LOVES!!! We are going camping July 4th weekend (which we are surprising her) and we are going to her Nanan and Uncle Cam's Coast house in Bay St. Louis July 15th weekend to celebrate her little cousin Andrus' birthday. We are going to try and fit in some little fun things here and there and just enjoy fun time!

In the meantime, please continue to pray for her, because that is what she needs the most!!! Love to you all!