Wednesday, March 4, 2015

2015 Scope 1

I have not updated my blog for a while and I apologize. Busy Mommy mode!










All was pretty quit since her last scope in August of 2014.She had her latest scope was on February 12, 2015 with Dr. Firestone-Baum at Ochsner. Rylee did not have any banding, which makes over one year since she has had to have a varice banded.This does not mean that the varices are gone or that she is cured, this just means that it is a good thing for her right now. She had platelet transfusion because her platelets were low going into her procedure. She left with her platelets at 82,000 which was really high her. Unfortunately on February 18th she had to go have blood work because we noticed something was just not right. Her platelets had dropped to 29,000 which is really low. After seeing the pediatrician and calling GI, we had to just wait it out. Most of you do not know, but your platelets can actually drop and rise vice versa due to your platelets being filtered in and out of your spleen. Since Rylee's spleen is so large, her spleen eats her platelets so what little platelets she has we need to watch carefully.This mom gets pretty nervous with the drop in platelets, so we returned to pediatrician on Friday to check her count once again. Her platelets did rise to 42,000 but that is still low. We are constantly watching for bruising, bleeding gums and nose bleeds. Any unusual signs and we call GI and Hematology. We are no longer at Children's Hospital due to her GI leaving the hospital last year. We are at Ochsner and though it is very different, we are trying to adjust.Ochsner has this wonderful app I downloaded on my phone. I can email her doctors, schedule appointments, look at test results, and view all upcoming appointments. It is pretty great!Now to the fun stuff.

Monday, March 2 she had two doctor appointments in NOLA.Nana and Poppy decided to accompany us since Danny had to work.We left super early to arrive at Ochsner Baptist to meet Dr. Parise. Rylee really liked her and she advised we put Rylee on a new medication to help with bleeding issues. We left Ochsner and had a quick pit stop lunch at Fury's on Vets. After lunch it was time to head to Ochsner Main Campus on Jefferson Highway to meet with her new Hematologist.We ended up running into her GI, Dr. Firestone-Baum in the hallway. Dr. Firestone-Baum had already been updated by Dr. Parise regarding the new medication and the summary of our visit. She did a quick check on Rylee just to make sure she was feeling well. It is always nice to see her, but super nice to get a quick check up in between scopes.

Her new Hematologist, Dr. Fletcher, met with us to discuss and answer any questions.Since he is new to Rylee, I did have to answer all the questions that I have answered 7812365897 times before. First we started with the stroke in utero, then we moved on to PVT, etc. He did go over all the information with me again concerning her diagnosis.We briefly touched on the Rex Shunt surgery, which he did not offer any opinion regarding this surgery because he is unfamiliar with it. He did mention that we can discuss with all doctors other options that might help Rylee. He did, however, say verbatim, exactly what the surgeon mentioned to us when we first approached the surgery option.Basically, all doctors are against her having the surgery at this point in time.Danny and I will be discussing more options sooner than later, just to go over all opinions and information we have received from all doctors involved in her care. I worry every single minute of the day. Dr. Fletcher is testing her for some additional autoimmune to make sure she does not have anything else going on lowering her platelets.I will not receive those results for another week or so.He is also obtaining all her records for Children's Hospital Hematology to go over all of the testing she underwent during her diagnosis.

Just a little tidbit before I leave, Rylee is one of many children/adults suffering from this rare disease. I am part of a wonderful group on FB call Portal Vein Thrombosis and Portal Hypertension in Children and Adults. All of these families could use some prayers as well. When you say your prayers for Rylee please say prayers for those families. Thanks so much!!! Continue prayers as always!!








1 comment:

  1. Thank you for sharing! We are friends on the support page and know too well what you are dealing with. Lots of love, hugs and prayers on this journey! It will be amazing to see how God uses our strong kids!

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