THE DAY OUR WORLD CHANGED....AGAIN

MARCH 20, 2011

Yes, I am back tracking a bit. On Sunday, March 20, 2011, what was suppose to be a fun day with my huge family boiling crawfish, laughing and screaming at kids, turned into a very terrifying experience. Rylee was admitted to Children's Hospital with a tremendously enlarged spleen, low platelet count and strep throat. Now most of you know that we were dealing with low platelets for approximately a month before being admitted. The doctors took enormous amounts of blood to test for virals which could contribute to the enlargement of her spleen, as well as performing CT scan, Chest X-Ray and Ultrasound.

On the morning of March 22, 2011, we were told that they found evidence of a clot in the portal vein of her liver with damage to the veins (varices) in her esophagus. All of the doctors did ask several questions about her stay in NICU and if she had tube/cord in her "belly". Of course since her birth is somewhat of a blur to me due to the stroke, Danny replied right away that she indeed did have a cord in her belly. The doctors were beginning to put the puzzle together day by day. Gastrointestinal doctors were very adamant about performing a EDG (scope) on her immediately to check for possible bleeding in her esophagus, etc. due to the varices. They would need to check her liver counts and urine. Somehow it seems that the although she did have a clot in the main vein between her liver and her spleen, her body somehow found a way to go around that clot and keep a flow to her liver. Danny and I realized that we were dealing with something more serious than what we expected and as I started to have panic attacks, he stayed strong and focused. With so many things being thrown in our direction and still no definitive answers for what is happening to our child, it became a guessing game and if the puzzles pieces would ever fit together or were there more to add? Does this all stem from her stroke in utero or is this a new develepment?

On March 24, 2011 our 10 year wedding anniversary, the doctors received most of the viral labs back and they were negative. They decided to let us go home and return for a bone marrow biopsy to rule out any other factors and to perform her first EDG to repair some of the varices by banding. We returned home, but were very fearful of what was coming......bone marrow biopsy and Rylee's first EDG procedure. We left the hospital worrisome, or at least I did, but we also left thankful that this was found. We do not know how long ago the clot happened. It could have happened when she was 3,4,5,6,7. We are lucky her veins decided to re route around the clot to keep her liver functioning. There seems to be a reason that we were sent for blood work in February for one minor thing that at the time seemed huge. Mommies instinct is NEVER EVER EVER wrong and this time Danny can not deny that!!!! :)

On March 27, 2011 we were admitted to the hematology floor where blood labs were drawn and Rylee received her first platelet transfusion. Her platelets need to be over 100,000 in order to undergo the EDG. Rylee's platelets have been ranging from 36,000 to 62,000. A normal person has a platelet count of 150,000-300,000.

On March 28, 2011 Rylee underwent her first EDG. I was a mess. It is very scary for me to trust these doctors with my most precious gift. I was scared for her, scared of the procedure and just plain out worried. She had the bone marrow biopsy first then she was flipped over and they did the EDG. They did find varices, that were in fact worse than what they thought. They banded them and we were told this would be done every few weeks until we could get the varices under control. We were also told that since her spleen is the largest they have seen at Children's Hospital, it is more than definite that she will have to have surgery. We stayed the night in PICU then were transferred to a regular room before we were released on March 30, 2011. We were so overwhelmed by the outpour of prayers, love and concern for Rylee and for us! The prayers are keeping us going!

Rylee has been so cooperative, very patient, compliant and of course spunky. She had me laughing in the PICU so much that I think they were ready to kick us out. There is something about a 8 year old calling the nurses station herself saying "I really gotta pee in here bad!!!" They came after that call!

These were the days our world changed......again......first her birth and now this!