Signs

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


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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!!

It has been an extremely busy 7 months for us. So many things have happened since my last post on this blog. Instead of boring you with every detail of our lives the last 7 months I will touch on the most important issues. After Rylee's admit to the hospital in August 2013 for rotavirus and scope we had two uneventful "normal" months. Unfortunately, in October we lost my Uncle Eddie on my dad's side to colon cancer. Thanksgiving came and went and Christmas was very difficult for my moms side of the family. As many of you know, my little cousin Melissa who was battling kidney cancer and whom was diagnose within weeks of my Uncle Eddie, was not doing well. We celebrated Christmas with her at her home and had a fabulous time, but out hearts were very heavy for Christmas knowing she was weakening. New Year's came and went like the fireworks we shot and Danny and I manage to get a quick getaway in New Orleans. The week following we received the news that Melissa was losing her brave battle with her cancer. There was nothing we could do to make time stop. My family was devastated and in a state of shock. Both sides of my family are very close knit and us cousins were raised as siblings. She is Only 26, the younges girl
Cousin and we can't help her. We made a trip to Baton Rouge to see her for the last time the following Sunday, Monday I received a call from Rylee's doctors office that her GI since diagnosis, Dr. Monagas, was leaving Children's hospital. They informed me that if I wanted him to perform her scope I needed to schedule for that Thursday. Are you kidding?! In the middle of waiting for a phone call about my cousin? I prayed, I thought it was a sign and I decided that Melissa would want me to do what is best for Rylee. She was always checking on Rylee, texting me and occasionally her and Rylee would text each other. I scheduled the scope and at 5:30 am on Wednesday, January 15 I received the message that my beautiful cousin received her wings. Speechless and heartbroken. Danny and I decided not to tell Rylee before her scope about her Aunt Melissa. The next morning I was at Children's for Rylee's scope. Very strange things happened that day which made me realize this was Melissa watching over Rylee all along. Rylee had a nice size varice which could have not turned out well if we would have waited to have a scope at her original scheduled time.  She had one varice banded and we had to say goodbye to her favorite doctor, who has watched her grow up, calmed us down, gave us much needed love and hugs but most importantly taken such good care of our baby. So we were left with a decision. Follow Dr Monagas to his new home in San Antonio or find a doctor locally who also performs banding. She is due for another scope in July with a follow up in April. So after researching and contemplating and praying and not to mention talking to Melissa, I decided it is worth taking the risk and seeing a somewhat new Dr.  This Dr was a fellow at children's with Dr. Monagas when Rylee was diagnosed and she actually sat in on Rylees procedures. I am scheduling her appointment next week. I truly, truly believe that Rylee's special angel has a lot, if not all, to do with this. This is a huge change and step for her that could possibly mean different treatments, etc. I am praying this turns out as good as I hope it will be. It has been a rough, hard 6 months emotionally for all of us and we are all ready for something positive to happen especially for Rylee. She had a very hard time accepting not seeing her Aunt Melissa anymore. As always, just keep praying for her and please say some extra needed prayers for Melissa's husband, Derek, my uncle dale, aunt Bridget and little
Cousin, Jonathan that in time they find comfort and peace.

Love, Brandi

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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