Meeting with Surgeon

 Friday, April 27, 2012

On Thursday, April 26 we went to Children's to meet with Dr. H. Bob Saggi, Liver transplant specialist at Tulane. Dr. Saggi is a very accredited surgeon from Children's Texas. I may have not explained to all I you earlier that in patients with portal hypertension they watch the liver closely and since the portal vein affects the liver, a liver transplant surgeon is always consulted. Dr. Saggi informed us that he has been following Rylee's case with Dr. Monagus. He has studied her CT scans, MRI films and GI chart (including scope surgeries). He talked to Rylee about the activities she likes to do and how she feels and then he began his findings. He drew a picture for us like the one above. He explained to her that when she was a baby, in order to keep her alive,the doctors had to put a cord in her belly and he showed us where the cord was places. The portal vein. Due to that cord, as she got older she developed a blood clot which leads us to where we are now. Yes, tears filled my eyes. I've known that but when Dr. Saggi explained it in his gentle way to my 9 year old, it hit me hard. Dr. Saggi told us that there are very many risk factors in removing Rylee's spleen at this time. If we remove it at her age he has a very great risk of getting sepsis. Not only that but because of the damage to her portal vein from the clot, if he had to go back and perform a shunt it would be very risky because of developing clots due to the spleen being removed already. The spleen filters blood and without it and having to perform a shunt, it would be very dangerous. In turn it could possibly lead to damage to other organs and we would be looking at transplant. Her liver is functioning and is not cirrotic which is the case in most portal hypertension patients. If that wasn't enough, he also told us that performing a shunt on her could work because she is old enough to have it done and the placement is there, but that is absolute last result and it can cause neurological issues. Most of the time a shunt is performed if a esophical varice bleeds internally or if there is any type of gastro bleed. He did say that as she gets older her spleen will grow with her, not shrink, but conform to her body. We asked if there was a possibility that her spleen could regress and shrink and he said "not likely at all". Dr. Saggi praised Dr. Monagus for his care of her GI varices. Now, Dr. Saggi did say that if rylee has a bleed any time in the future he would want to perform surgery because a bleed is very serious. Dr. Monagus, Danny and myself asked many question regarding activity and possibilities of shrinking her spleen as well. We cannot shrink her spleen due to the area of damage on the portal vein and we were all surprised about the activities. He indicated that she could play soccer, ball, dance, etc but if course she is still limited in her activities. When rylee told him she loves to swim his face lit up like a light! That is the best activity for her and she can even go on a waterside as long as it isn't a "crazy" one as he put it. So here we are. As Dr. Monagus said we must "adapt". Danny and I are still trying to cope with the news. We can't decide in our mind if it is good or bad and we can't decide in our hearts either. There is nothing more agonizing than living in constant worry of her spleen, her well being, her emotional state from all of this but at the same time what is best for her is our main concern. She will continue to have scopes but Ty may space apart greatly. She will also have to continue to be monitored by her hematologist for her platelets. As crazy as it sounds, I am finally admitting and realizing that my child has a chronic illness. I have not been able to say those words for over a year now. So here we are. We must try to resume a normal life and I will try and slowly start peeling the bubble wrap away. God show me the way, keep her safe and give me strength!

On another note Grandparents day was at school today.  She has been talking about it and practicing ALL week.  She woke up this morning signing and smiling!  I hope Nana and Poppy loved every minute of it!  They definitely deserve more than just one day at school to honor all that they do.  Rylee adores them and how beautiful it is to watch!!!

First Holy Communion is tomorrow morning!! What a very special day for my baby!  She is so excited to wear her beautiful white dress, shoes and veil, but more excited to see her Nanan, Uncle CC, Aunt Amy, Nana and Poppy!  Hoping Uncle Cam and Andrus can meet us there!

How blessed we are to have the most amazing, supportive, loving and uplifting family all of who go out of there way to put a smile on Rylee's face!  You have no idea how much we love you and how much we appreciate you being such a special part of our lives but most importantly being there for Rylee and all that she is enduring!

Brandi