10th Scope

Arrived at the hospital for 6:30 am
Check in and as you can see in a great mood!




All blood work was done immediately, anesthesia papers and consult done, Dr. Monagus came in to discuss and check her over and platelets ordered. Platelet count was her normal 47,000 which was good considering they haven't been checked in 4 months. Rylee was a little hesitant to enter procedure due to Nana and Poppy not there to kiss her before she went in. They got stuck in Causeway traffic. They administered her platelets and put her IV in in the procedure room. It only took about 20 minutes and Dr. Monagus came to talk to us about his findings. He was very, very pleased. He found one varice forming but not bulging to band and her spleen has moved up again!!!! He seemed more happy about that than anything else! He said that it appears as she is growing it is moving with her growth but also that her veins are not obstructing its movement which is a big plus! We do not have to see him for follow up until January! Yes, FOLLOW UP until January!!!! This is exciting news. We had blood work done for endocrinologist as well, but must wait on those results. We were called to recovery really quick and she was sitting up awake and alert, which has never been the case. Her first words were "where are Nana and Poppy?" The nurse was nice enough to stop and get them to accompany us to the elevator since Rylee was so concerned about seeing them. Big smiles from then on until she got hungry. She is a bear like her godfather when she is hungry! Danny and I are so happy and thankful for these results! What a great early birthday present for our baby girl! Thanks for all the prayers!




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Update

We have had a busy summer! Birth of a brand new angel, trip to Shannon and Cam's coast house in Mississippi, flower girl shopping, camping with Granny and Poppa, swim team, camps, trips with Nana and Poppy and back to school shopping. I would say it was a successful summer! Yesterday was Rylee's follow up with Dr. Monagas. This was
Her post scope follow up before next scope. He did not do blood labs on her this time, because he knew her platelets would be low regardless. We just have to keep watching for signs of them dropping extremely low. He felt her belly and it appears her spleen has shifted a little more under her ribs, which is what we expect with her growing taller. She will have another scope in mid October which I will be scheduling shortly. She has a endocrinology appointment on Monday which she is not happy about, but we must do what needs to be done for her health and well being.




School started Monday and so far she loves her teachers and is very excited about being back. She has a little more freedom as of right now. She is allowed to participate in P.E. and recess without a parent. She just cannot participate in contact sports, but this is a leap forward for her
and for us. Danny and Nana have been attending recess with her for 2 years. Rylee knows if she participates in activities or plays on equipment she is not suppose to, her freedom will be taken away. Hopefully she will not get caught up in the moment because she REALLY enjoys not having them there eyeballing her! It is very hard not worry, but I'm trying to pop holes in the bubble wrap I've had around her for 2 years. We are praying that her school year is a successful, non stressful academic year and hoping she enjoys her last year at CES!
As always, keep those prayers coming for my baby!
Brandi
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9th scope

Woke up at 3:30 am to be at hospital for 6:30 admit. On time but nothing else was. Her platelets were at 52,000 and they started ore platelet meds and we walked her down to procedure room at 10:00 am. She was administered platelets and given her IV at that time as well. Dr. Monagas was out talking with his at 10:40 am. The scope itself went well. No visible varice to band though he did barely see one forming. Her stomach is really, really red though which could be from her portal hypertension. Danny and I have not done anything different diet wise besides exercise and supplements. We have stopped the supplement to see if that is the culprit. He gave her another medicine to take and increased her nexium to 2x per day instead of one. Her hematologist wanted her to have an additional unit of platelets so those were administered. She was not a happy patient and would not allow them to take her labs so we are not sure what her platelet count is right now. She has follow up with her GI in 8 weeks and her 10th scope 8 weeks after that. This is the longest we have gone and I'm thankful for that but it makes me somewhat nervous at the same time. Praying for no bleeds, steady platelet counts and safety!

We are getting really excited about my Godchild/niece making her grand entrance into the world! Amy went to the dr last Friday and he indicated that he thinks sometime in the next two weeks (including this week)!! CAN'T WAIT!!!!! We all guessed a day....I say July 6, Rylee July 8 and Danny said "next week"! We are all super excited and looking forward to the new addition to our family!

As always keep praying for Rylee!

Love,
Brandi


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Wow!

So I received a call from the hematologist at 4:30 Monday afternoon. He told me the IVIG did not work. I know it was a trial and error procedure, but 10 hr transfusion, migraine headaches and hardly any sleep! He told me that sometimes it doesn't work in some cases and since her bad antibodies (ITP) was very, very mild he was not going to try anything else right now. Her platelets have stayed in a range he is comfortable with for over a year. He wants to leave her alone and monitor her for now. She will have to have platelet transfusions for her scopes as always and like the surgeon advised, he would try another procedure if or when she needed a surgery because she will need high platelets. He said her spleen is the main issue with her platelet level. So I decided to ask him his opinion on her spleen
Considering he is the dr that her GI refers to when we ask questions about her spleen. He went over the surgeons recommendation with me and he concurred. He said that if she ever had a bleed from a varice they will need her spleen to do surgery. Since he is in the mild range with her platelets her condition is not altering her life at this point and hopefully they won't in the future. Of course there are many things that can happen and right now leaving her alone and being treated and monitored in case something happens is the best option. She has her scope this Thursday at 8:00 am.
Praying really hard that the scope goes well.

Please say extra prayers for my cousin in law's, Jenny, dad, Mr. Dennis Schaff. He is fighting in ICU and has been since last Wednesday. He is a part of my extended family and we all love him! Jenny needs him, so please while you are praying for my child say an extra prayer for Mr. Dennis!
Love,
Brandi
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IVIG

We left for hospital at 7:45. Had to make a quick stop at my uncles pediatric office in Metairie to pick up a prayer blanket for another child at Children's. We arrived wen to admit, made our way up to the 5th floor and our stay began. Nurse came in took vitals, gathered all necessary information, ordered pre meds for procedure and called hemoc drs. Nurses came in to do IV which is the most dreaded part. Surprisingly, the charge nurse got it in one try and even showed rylee a video of her giving blood and how much better Rylee did than her. Made her laugh! Rylee was in good spirits. Hemoc dr came down and explained IVIG, discussed side effects and discharge. She was given Zofran for nausea and Benadryl in 15 minute increments through her IV.




Once that was done it was like a light went off...no more spunky, jokes, dancing....sleepy, cranky and ornary set in. She took a few more bites of lunch and then....zzzzzz.




She woke up as soon as nurse came in to check vitals and start IVIG. IVIG was started at 12:15 and vitals checked every 15 minutes for first hour and then every half hour and them after 5 hrs every hour. She liked her nurse, mostly because she reminded her of her Aunt Amy.




We had to stay in the room up until the half way mark in order to watch her closely for side effects. She was in a good mood and upbeat. We "escaped" around 6:00 to take her for a walk and get an ice cream. We went out in the courtyard and walked the sidewalks. She was determined to walk with her pole without assistance.




She kept saying "geez they have some bumps in this walkway, gotta find a way around them!" a light went off in my head. The walkway is like our journey, twisting, winding, in a circle, bumpy at times with "roadblocks" to find a way around. I let her do it herself and she did. Thats when I really felt my heart skip a beat. My 9 year old child is facing all these bumps in the road and having to find a way around them with her determination and strength. It breaks my heart, but at the same time I couldn't be prouder! She decided to make a wish in the fountain before going back up for the remaining 5 hrs.




Of course we asked what she wished for and of course she would not share! The remaining 5 hrs was like watching grass grow. I was never so happy to hear a IV pole beep than I was at 10:05 pm. Danny was snoring, rylee asleep curled up on Patches, her favorite stuffed animal since 1 years old and I was already packing to go home. The nurse came in, unhooked her IV, called the dr, got discharge papers ready and time for IV to come out! Oh boy!!! This is worse than it going in! He screamed and put up a little fight because they used an ungodly amount of tape that roped her skin. We opted to leave a piece on because frankly, it was a long day and it was 11:00 at night. We left with orders to have blood work done on Saturday and we were on our way! We arrived home around 12:15 am.




I think the picture sums up our long day. She did not have any side effects thank goodness and we were told that her platelet count was 58 before the IVIG. That is up from the 51 on May 3. We just have to pray it works!!!! We took her to lakeview hospital to have her labs done and sent to Children's today. She was NOT happy to have that done at all. We will not find out the results until Monday. Thankful for my brave, spunky child and happy she is back to normal today riding her rip stick, playing with her puppies and not a care in the world today! Now wait for results and scope on Thursday! Please God be with us!




As always...keep praying!
Brandi
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Very frustrated and ????

After my telephone call from the hematologist my wheels started spinning and so did my emotions. He called and tells me that Rylee's labs from a MONTH ago....May 3rd.....were positive for bad antibodies very slightly and we need IVIG before her next scope, June 21. Okay, so This is the same dr that had us wait 7 hrs to have this procedure 1 year ago on memorial day and my very patient husband went ballistic!!!!!! I want to know why he did not tell Danny these findings at the may 3 appointment and why it took a month to call us. Now before I get completely huffy puffy, I am not sure if this is a test that has to sit and grow, but still those normally take 72 hrs. I am aware that this issue is not related to her GI and he is the blood dr, but how will this effect her scope if it doesn't work? I'm just very upset that I have a hard time trusting this dr because of all of his antics and I am also very upset that I have to make this decision on what to do?!?! Hold off on IVIG, fire this dr, hire another dr and let her proceed to scope with platelet transfusion as normal or go through with IVIG and see what happens then hire another dr.? We are not even sure if the IVIG will work. Making this decision is not the position I want to be in as a parent! I am not sure if this will hurt her or help her and I hate her having to go through all of these evasive treatments to find out! So I PRAY for God to lead me in the right direction. When she was suppose to have this the first time it obviously wasn't meant to be, so when the dr called and told me this after a year of nothing in her blood my first thought was "God is telling me something!" is God telling me to find a new dr or proceed with the IVIG....that is the question. Most of the time my gut instinct as a mother is right, in this case I am not sure because I have to decide what is medically best for my child. I want for someone, anyone, to give me the answer, but I guess then it wouldn't be called motherhood! So as of right now we scheduled the IVIG for Friday. This gives us more time to talk to her GI dr, the hematologist, research, and rylee doesn't have to miss the first of her swim team practices. Missing is very important to us because she missed out, and misses out, on a lot of activities due to get spleen and procedures. Who knows what will happen between now and Friday, hopefully God will talk to me by then. I'm sure my Maw Maw would be giving me her advice, which I would follow of course. Maybe she will give me an answer from up there too. Sure do miss her a lot! I've been talking her ear off the last few days!

As always pray for Rylee! We need lots of prayers in the next few weeks.


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Update--- hematology

I received a call from Dr. Morales the hematologist. He received lab results and found that Rylee was slightly positive for ITP. This means bad antibodies in her blood. This is a different issue than GI. He suspected that she has had an autoimmune problem due to her bone marrow biopsy last year. Her blood has never come back positive for this issue (or at least from what Danny and I are aware of) but it did this time. It is a 1 out 4 so it is very slight but still there. She will have to have the IVIG to "flush" out the bad antibodies and see if it helps stabilize and raise her platelets. Now here is the other issue. Since her spleen is very large it is trapping her platelets on its own. The IVIG will
raise them hopefully but not to normal and it will not shrink her spleen. We also don't know if her spleen will start to "eat" these platelets. We are faced with trial and error. The IVIG does have some scary side effects as well and reactions. We are going to try and schedule it for Monday and into Tuesday. Rylee will be hooked up
to an IV for 10 hrs and it will flush and replace the bad antibodies. I ask for prayers once again. She will also be facing her 9th scope on June 21. If the IVIG does what it is suppose to she will not have to have a platelet transfusion before scopes. Please pray that all goes well for both procedures and strength for all of us!!!

Thanks

Brandi
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Checking in and update

It has been a very busy few weeks. Mother's Day, end of school year, graduations, baby shower #1 and baby shower #2 planning! On the medical front, Danny and Rylee went to hematologist in early May. He released her until further notice meaning if her platelets drop extremely low (20k) or if she has to have a surgery. Her GI dr sends all of counts to the hematologist so he is updated on her counts. I'm slightly anxious about her counts right now. We are 3 weeks out until next scope and her platelet level about a month ago was 51. Though this is within her normal range, it seems slightly low to me this far out. She always has platelet transfusion before scope to boost her up, but it may take 2 units instead of one this go round. I know the signs to look for when we are in danger, so I just keep monitoring. She has started more activities since the surgeon went over activities with us. It is slightly difficult for mommy to not be nervous though. She is working out with Danny and I at the YMCA and has been swimming sometimes twice a day since school let out. She loves swimming and that is the BEST activity for her spleen enlargement. Next scope June 21st!!!
As most of you know we are awaiting the arrival of a new baby. My first niece and godchild is due to make her arrival in mid July. Her first baby shower was May 20th. It was beautiful and mommy, daddy and Lily received a lot of love! We had second shower on June 2 with family and friends. Had a fun time!






Mommy looks absolutely beautiful and all is well! I love being a mother, but being a Nanan is a def second! Lily Reese is one loved little girl to have 2 Godmothers. I will share the honor with Amy's wonderful sister Melanie. Rylee has practiced changing diapers, but only #1! She said no way to No. #2! Lol. Tomorrow is the couples shower for Chris and Amy. I can't wait to see family and host a shower for my Lily bug! I'll share pictures from the shower tomorrow!




As always, keep Rylee in your prayers!!! Love, Brandi
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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

8th scope

Rylee had her 8th scope today. We made it through the bad weather to Children's right on time. Her platelets were at 54, not the highest and also not the lowest. They decided to put her IV and administer platelets in the procedure room and we opted for no varcet this go round. She was in a terrific mood! She was making what she calls Uncle CC crazy faces while waiting to be picked up by Ms. Tammy the GI procedure nurse. Dr. Monagus came in about 11:45 to examine her and talk with us about surgery. He examined her and said her spleen shrunk just slightly just by his finger measurements. Yes, he can do that, not always accurate, but his best estimation. Thank goodness Nana and Poppy were there to listen because I'm still not sure I have my facts straight. Dr. Monagus indicated that after speaking with her hematologist and discussing her case for the third time with other dr's and surgeon they think removing her spleen is the best option. She was rolled to procedure room at 1:00 and at 1:50 Dr Monagus was sitting next to us showing us the pictures and explaining. They banded one varice and not two as expected. Since she only had one, there was no need to be admitted for the night. She was wide awake in recovery which has not been the case the last two times so that made me smile! She was very upset that she cannot eat though, so that makes for a very cranky 9 year old, but hey with good comes the not so good. She was so alert we were able to deliver her donated Girl Scout cookies to the nurses and dr.'s! My goodness did we make their day! We delivered to Dr. Monagus last and he hugged us both tight and said "thank you so much!" I couldn't ask for a better day. As I drove home the sun was shining in my eyes and I looked to it and said "I love you too Maw Maw". Her birthday is tomorrow and last year I couldn't spend her last birthday with her because we were in the hospital. I think she wanted me to know she was with us today, like everyday, but she wanted to give me a bit of good news as her birthday present! So on that note, I will sleep well tonight. I hope to see my Maw Maw in my dreams and enjoy the laughter of my wonderful husband and beautiful baby girl in the other room. Thank you all so much for your thoughts, prayers and support for our family! Love you all!

Love,
Brandi



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1 year Anniversary of Diagnosis

Rylee March 2011


So today makes one year that we were in Children's getting the news of Rylee's diagnosis'. It has been a very hard, long and stressful year with highs, lows, positives, negatives, smiles, tears, hugs and triumph. She will have her 8th scope on Thursday, March 22 and hopefully the surgeon will talk to us about surgery. I never thought I would ever say that. Danny, Rylee and I are ready to get back to normal. I think we have somewhat forgotten what normal is at this point. I am so proud of her for all she has endured and all that she is still enduring. It is hard to go from being an active child who loves to run and play to a child whose steps are closely watched and monitored. She has not run, played, jumped, kicked a ball with friends in over a year. Though I am scared of the surgery options and the surgery, I have to have faith and believe that God will give me strength. In this year we have learned to not take things for granted, to trust, open our hearts and to not judge anyone. On top of the medical issues we lost our Rocky dog, my MeMe and my Maw Maw all within months of each other. A lot of sadness and heartache, but much needed time close with our Durbin and Collins families, who are a true blessing. God gave me this large crazy, fun loving family for a reason. On the positive, we have a new baby and two weddings to look forward too. Rylee's Uncle Chris and Aunt Amy will give her a beautiful baby girl cousin named Lily and she will be flower girl in her Aunt Ashley's wedding. I truly believe my grandmother's had a pow wow with God when they arrived!

So we will enter the hospital on Thursday anxious, nervous, scared but thankful for the continuous prayers and outpouring of love you have all given us. Please pray for us and especially Rylee.

Love Brandi



Rylee March 2012


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Rylee's 7th Scope

Dr. Patches the faithful dog.
Rylee waiting to be admitted for scope.

Rylee had her 7th scope procedure yesterday. They did not have to band any varices yesterday, but she does have two that are popping up and will need to be banded in 4-6 weeks. The next visit we will have to stay over night. Her body is no longer showing signs of healing itself as it was doing in November. The surgeon is consulting with other dr's regarding the best surgery option for Rylee. The news was not great but it was not bad. We just want what is the best option for Rylee. She did not do well with the anesthia yesterday. Very difficult to wake her up and she was extremely agitated. It was a very difficult day yesterday on all of us. My parents are as always an amazing help. She is one very lucky little girl to have the best Nana and Poppy! We are praying for God to lead us in the right direction and to give us continued strength and carry us through all of this. It will make exactly one year since her diagnosis next month. I have scheduled her 8th scope almost to the exact day of her first one. Many people have asked and are wondering what is taking so long regarding surgery. Dr. Monagus told us yesterday that they are delaying because her body was showing signs of improvement and they want to explore every option possible before deciding on the risky surgery. For that we are grateful, but we are hoping to come to a resolution by this summer so that Rylee can get back to being the active, spunky child she was a year ago. As always, thank you for your thoughts and especially the prayers! We need them!



Brandi, Danny and Rylee

Playing Catch Up

It has been a very busy few months on our end. Rylee had her follow up with Dr. Monagus a few weeks ago and her next scope is set for February 7, 2012. He did have her MRI and MRA films in hand, but he is not a surgeon, so he could not give us any information. He is meeting with the surgeon tomorrow regarding Rylee. We should have an answer between now and then. If we do not hear from them, we will discuss at the scope. It seems like the affects from her stroke are rearing its ugly head. Meaning the damage to her left frontal lobe is affecting her performance in school. We will get through it, but it sure is frustrating. It is more frustrating for her than it is for us as the parents and I can only imagine what she is going through herself. I just keep thinking there will be a light at the end of the tunnel somewhere. We are going to try a diet and some supplements to see if we can handle it naturally.

On a much lighter note, she is very excited about becoming a big cousin!!! Maybe not as excited as I am about becoming an AUNTIE!!! I am thrilled that my little brother and the beautiful Amy Seal will be welcoming my niece or nephew into the world in July. We will find out the gender of the baby March 2nd! This might be the first time I don't have a definite feeling about the gender, but either way I am already completely in love with this child!!! This child has given his/her aunt a lot to look forward too and has kept my mind off of all the things going on with Rylee.

She is enjoying cookie sales for her Brownie troop and sold a lot of boxes. She has collected a numerous amount to be donated to Children's Hospital. So proud of her decision.

As always, keep her in your prayers and we thank you!

Brandi