You immediately started singing the song when you read that title or you thought about the Mel Gibson movie, right? Either way, I really feel like my life revolves around signs, or my gut instinct. It's as simple as Peter Pan at a fairly large amount of children's theaters. I'll explain that one later.
It has been a few months since my last post and boy has a lot happened. Some good, some bad. Warning ....this will be long. Rylee started seeing a wonderful hematologist and pediatrician at Ochsner who are both very thorough, cautious, nurturing and not overly stressed by what they find or in dealing with me. If you know me, you know the not overly stressed part is what I need. So we are now officially followed by all Ochsner doctors. In March, she was diagnosed with Factor V Leiden which is a blood clotting disorder. Her hematologist is fairly certain that this diagnosis explains not only her stroke, but her PVT, etc. Factor V is inherited from either father and/or mother. So, in short, she has the type that was inherited from one parent. Which parent, we do not know. Danny and I will have to be tested. Most people live with Factor V and never know they have it unless tested. In Rylee's case there were so many signs and questions her hematologist wanted an answer and so here we are. We cannot treat the Factor V because her current medical counteracts with the clotting. Low platelets, bleeding- Factor V-clotting. She had her 6 month scope yesterday and she did not need a transfusion, nor did she have any banding. Her platelets have actually stayed at 52,000 for over a month. For Rylee that is good considering her platelets are constantly rising and falling. Like they say milk does a body good, well in her case swimming is apparently doing her body good! Her other labs were not concerning for the doctors at this time. Her Bilirubin was a little higher in June. We have never been told her bilirubin was elevated, so we are hoping this is just due to her Portal Hypertension which can cause it. Right now she is enjoying her competitive swimming, summer and her friends.
It was an unusual day at Ocshner though. All of Rylee's doctors know my uncle or know of my uncle. At this point, I think he should get a star on the Hollywood Walk of Fame. As everyone knows my Uncle Keith was diagnosed with Cancer in May. Boy, oh boy, God must really think I am a strong person!!! If there is one thing I take pride in, it's being a part of a family who has always stayed steadfast and strong in their faith. Like they say, the family that prays together stays together. My absolute favorite memories are of growing up with my aunts and uncles. When you have that many aunts and uncles there is always someone to occupy your time (or for you to annoy).With my Uncle Keith and I being so close in age, he had no choice but to be my instant playmate and friend.
I know I speak for my family when I say the outpouring of love, prayers and support for him is humbling. It is amazing to see how many people love and adore him as much as I do. Believe it or not, I was once a little girl who always thought the sun and the moon would rise and set around my young uncle.I would follow him around like a little lost puppy and he never complained that I know of, until the day I called him Uncle Keith at school in front of his friends. Yep, I sure did, and I still have the visual of the exact moment it happened. I think one of my cousins actually brought that up not too long ago and if I remember correctly,as one of my little's was telling the story my uncle yelled out "It was Brandi! Definitely Brandi!"I had to verify that it was that story and not some other issue I was being blamed for in the past. I would say he made a full recovery from the middle school embarrassment don't you think? Of all the memories and "adventures of keith and Brandi" I like to call them, that memory appears to be the favorite amongst our family. Always brings a laugh.
As you can imagine, I am constantly praying. I sit and pray, I work and pray, I wash clothes and pray, I go to swim practice and I pray, I even pray in the shower. I think you get the picture. I pray for low bilirubin, high platelets, low platelets all of the things I never thought I would have to pray for when it comes to my child or my uncle, nor would I expect to have to know what all of the levels are suppose to mean. I would never in my wildest dreams have imagined that somehow my uncle and my child would have similar issues with bilirubin, platelets and portal vein. My uncle even told me after he was diagnosed he thought it was pretty ironic. In all honesty, people talk to me and I am reciting prayers by mid conversation. I pray for strength for my aunt, my cousins,my family, for myself and mostly I pray for a miracle. 12 years ago when Rylee was born I begged God, Charlene Richard, Blessed Father Seelos, every Saint I could think of to give me a miracle and I am praying the same now. My uncle has ALWAYS had my back. When I was young, when I was in adolescence, when I had Rylee, through every single issue arising from her birth, and until now he has never stopped being the protective uncle. I cannot stress how blessed I am to be the niece of THE Keith Collins. Not the doctor most of you know him as, but the funny, fun, kind hearted, giving man I love with all my heart. I had the most wonderful epiphany the other day. Rylee asked me about her great uncle and as we were talking, she reminded me of myself as a little girl. She thinks the sun and the moon rise and set around him just like I did at that age. She has thought that her ENTIRE life. I see myself as a child and the picture in my head of the safety she feels when she is with him and I am comforted. Let's face it, that hasn't changed for me at all, but it took looking into my child's eyes and seeing myself to bring me back to those beautiful memories of my childhood and the very special bond I have with my uncle because I was chosen by God to be born into this family at a specific time. We each have our own particular bonds with our family members. I have ones with my aunts and uncles that my cousins don't and vice versa, but it's all about God's impeccable timing and I cannot articulate how very thankful I am for his timing with mine. So this brings me to Peter Pan. The very first time I went to the Saenger theater I saw Peter Pan. My nanan took me and uncle keith on the day my brother was born. August 22, 1981 to be exact. I have been seeing this production advertised this summer for many child theaters in the NOLA and Northshore areas. Of course my first vision was Sandy Duncan flying around the Saenger like nobody's business. I think uncle keith and I sat with our mouths open the entire production. Rylee was scheduled to attend drama camp performing non other than, you got it, Peter Pan. Not only that, but Rylee's birthday is two days before my uncles in October and low and behold The movie Pan is set to premier in October, right before their birthdays.
You have all been more than generous with your prayers for Rylee. Keep the prayers coming for Her but add some extra special ones for my uncle.
Brandi
- Posted using BlogPress from my iPhone
Friday, July 24, 2015
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!!
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!!
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