Rotavirus/Scope....

I always say if I didn't have bad luck I would have any luck at all. Saturday, August 3 at around 8:30 p.m. Rylee started feeling really bad. She complained of her back and her stomach. It wasn't soon after that she began with what appeared to be the tummy bug. I had a flashback of when she was 3 with rotavirus! Soon after many trips to the royal throne I noticed a little blood. The red light started flashing in my mind. Blood, back pain and tummy....spleen or varices rupture?!?! She was having a really difficult time leaving the toilet due to both ends at the same time, so instead of driving the bridge straight to Children's we had no choice but to go to St. Tammany. They performed a CT of her spleen and tests for food poisoning, edema virus, etc. I told the drs it was exactly like the rotavirus but she was negative. After a few hours the drops of blood became nothing but blood and the ER dr ordered admit to children's with transport via ambulance. At 4:00 a.m. Rylee and I were transported to Children's. fanny ran home to take care of pets and pack for all three of us. I was relieved to be there I can tell you! Children's began running all the same tests as St. Tammany and in the meantime we were still running to the royal throne with a hospital bucket and it didn't seem like an end was in sight. Sunday morning the vomiting seized but we were still visiting the toilet. The stomach dr came in and informed us that she was indeed positive for rotavirus, but with so much blood they needed to do her scope early as well as a colonoscopy to rule out a varice rupture. They were concerned with the blood loss especially because her platelets were steadily dropping. Her platelets are low all the time but she was entering way low for her normal. By Monday morning it stopped. No visits to the potty or the bucket. She recieved a plasma transfusion before her scope. Her scope and colonoscopy were performed at 1:30 . At 3:00 we were called to recovery and brought back upstairs. Dr. Monagas spoke with Danny via phone and informed him that no varices ruptured. Her stomach was blood red raw though. The virus mixed with her low platelets caused the bleeding. She had to have a platelet transfusion after her scope due to her platelets being extremely low. She went from 68,000 at St. Tammany to 25,000 Monday afternoon!!! She was eating soft foods by that evening.



Immediately following Danny's conversation with the dr this momma started visiting the bucket and royal throne and was ordered to go home. Hard to leave my baby, but no worries because the best dad in the world had it all under control. By Tuesday morning I was better and my two babies were home by late afternoon. All I have to say about the rotavirus is scary and stay away!


She was able to start school today and was as happy as a lark. A little nervous being at a new school, no familiar faces or teaches but I think she can handle it. All I have to say is don't take things for granted people!! And love and hug your babies every day! Boy do I love my girl...



Thanks for all the continued prayers and support.

Brandi

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Pediatric stroke awareness

Many people do not know or do not believe that Rylee had a stroke in utero. People look shocked and their response is mainly "only old people have strokes!". Well, NO that is not the case. No one knows why it happens, in my case I do not know when or why or how, but i do know that it is not as uncommon as i thought. 10 years ago I was not aware of Facebook nor did I know there were other parents out there dealing with my same situation. She is one of many children who have suffered a stroke. There are so many different affects from a stroke and each child is different. It all depends on the part of the brain affected among many other things. These children all have one common bond...they are survivors and fighters! Rylee's stay in NICU for her stroke is related to her new medical diagnosis that I have been blogging about. Her "belly cord" caused a clot in her portal vein. We went from the doctors telling us she wouldn't make it to 10 years of accomplishments doing things they never thought she would ever do. Her smile has always made my heart skip a beat and when she does something they never thought she would it makes it that much sweeter. We have been through a lot and Rylee has been through way too much at only 10, but we take each day one day at a time. We hug a lot, kiss a lot, pray a lot and laugh a lot. She is surrounded and supported by the most amazing, crazy and HUGE, family I could have ever asked to be blessed with. We have never treated Rylee any different than any other child and we don't expect her to act any different. But we do know there are some things she cannot control and with each day comes a new one. The stroke does not define her, it is just something that happened. I am the proud parent of a beautiful, brave stroke survivor and she is my hero! So show your support for the month of May, wear purple, tell people you know...kids have strokes too and think about Rylee!








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Rylee's 11th Scope

It was another long day for us at the hospital. The last few times we were in and out quickly, but you can never predict what Will happen when you arrive. Our arrival was set for 7:00 am. We woke at 4:00, left at 5:35 and signed in at exactly 7:00 am. We were admitted to short stay and blood labs were drawn, normal checks on blood pressure and temp were taken, all bracelets put on and then the wait began. Platelets were at 44,000 and hemoc a orders said she was not to go into procedure unless platelets were at 75,000. This has not happened since this all began 2 years ago. Everyone was confused and it delayed the procedure time. Once all the kinks were worked out she was taken in at 11:10 am.




She walked into the procedure room with one arm around Dr. Monagus and one around Patches. After about 15 minutes in the waiting area Dr. Monagus was out talking to us about the results with a big smile in his face. Rylee had no varices to be banded. Her esophagus looked like a normal one and he is very pleased. He does not want to see us for 6 months!! Big milestone. Of course we have to watch for all the normal signs and symptoms but all in all GREAT!
I did ask Dr. Monagus about the Rex Shunt surgery regarding Rylee's case. This is the risky surgery that was recommended in the beginning stages of this illness. He stated that he would strongly not recommend this surgery for her because her body is shunting itself and she has improved every scope. Meaning, Rylee had a clot that dissolved, her veins rerouted themselves allowing blood flow to get to her liver (shunting itself) and the main issue is her spleen size and platelets at this point. This will never go away and we do not know what the future will bring. If she has more varices and she has a bleed, then we will be looking at this option possibly. Also, if for some reason she has other issues, by doing this surgery it would compromise future surgeries if needed. He did tell us that her spleen HAS SHRUNK. It moves as she grows, but it has shrunk. Her platelets are a constant issue. Danny and I are still trying to wrap our heads around all of this and process the information, but we take everything day by day and enjoy the good news when we receive it. Today was a good day all in all!




Rylee was in great spirits. She even completed one of the activity worksheets from the hospital that had us saying awe one minute and cracking up the next. She is a trooper and I am so proud of her for being so strong and brave!




Keep praying for continued improvement and healing! Thanks everyone!
Love,
Brandi
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GI follow for January 2013

Rylee had a really busy week the week of January 13. Her Nanan bought her tickets to see Justin Bieber Tuesday night, Wednesday she had her appt with Dr. Monagus and wedding rehearsal for the big wedding which was Last Friday. My little flower girl was excited!




Nothing major to report right now which is a good thing. Dr. Monagus asked her the normal questions about how she feels and if any bleeding has occurred. He felt her belly and indicated that her spleen felt better than it did in October. Which could mean that it moved up more under her ribs. Dr. Monagus has been with Rylee since she was 7 almost 8 and has watched her grow. He made the comment "I can't believe how much my little girl is growing up." He is a wonderful caring, compassionate doctor. Rylee adores him and I think the feeling is mutual.
On another note I have not posted in a while because
We have been busy bees since Christmas. My cousin on my moms side got married January 5 and now my cousin on my dads side got married January 18. Lots of fun for Rylee and I to be a part of each wedding. Both of my cousins were in my wedding and watching them grow into beautiful, strong, loving women is such a blessing! They each hold a special place in my heart!




Melissa, Desi and I before Melissa's wedding.




The ring bearer and flower girl for Ashley's wedding.
Thank you for your continued prayers! We feel them and always appreciate them. Keep them coming especially for her next scope on February 28th
Love,
Brandi
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