April 28, 2011
Rylee had her hematology appointment today at 1:30 p.m. with Dr. Morales. Danny took her and had her blood work drawn before the appointment to check her levels and had additional blood work drawn for her scope procedure on May 3rd. Her platelets are still ranging at 47,000-48,000. Dr. Morales wants to do a IVIG on her sometime after this scope and before the next scope. She will have to be hospitalized for the treatment. She will be hooked up to an IV for 8 hours a day for two days. Once she has the treatment she can go home. He seems to think that she has some antibodies floating around that are eating up all of her platelets. Unfortunately, it seems this is the only way to find out and treat the issue. Her spleen has gone down which is the good news but her platelets are still low.
Rylee is trying her hardest to handle all of this well. She is starting to become very irritated with her medical problems. She does not quite understand why she must continue to go to the hospital and see the doctors when she does not feel bad. This is way too much for an 8 year old to handle when all she wants to do is run and play. We are trying to find ways to help her cope. I am trying to find fun things for her to do in her condition (enlarged spleen). All she wants to do is be normal and not have me harping over the things she can not do. I am really praying that we get some good news after her next scope next week.
Friday, April 29, 2011
Sunday, April 24, 2011
Abadie Family Easter at Abita Campground
April 23, 2011
We spent the day celebrating Easter with the Abadie family. We had a great time at the campground with Granny and Poppa. Fishing, swimming, weenie roast and smores! Rylee loves the campground atmosphere and so does her Daddy. She caught a fish, saw a momma duck hiding eggs, watched the Geese and their babies and was scared of the alligator we spotted near the fishing lake. Needless to say it was adventurous but relaxing and FUN!!!
One thing we love about spending time with Granny and Poppa is there is always something spontaneous that pops up and makes us laugh! We sit around the motorhome, relax, talk, watch the girls fish and fight (LOL) and just enjoy! Watching Poppa and his two girls makes my heart smile.....after having two boys, it is wonderful to see his granddaughters melt when they see him! Now Granny on the other hand has her hands full with two girls....they are the spitting image of their dads......yep.....she is a saint! She wouldn't trade it for one minute!
I feel lots of camping for this family in the near future....wonder if the bunny will bring me a camper!
Collins Good Friday Boil
April 22, 2011
This is my favorite day of the year! Family tradition, old and new! My uncles have kept my grandfathers boiling recipe going for 30 years and with each new birth and wedding the sacks may grow, but the boiling continues. We normally have a space walk for the youngest Collins cousins, but this year my aunts and uncles were nice enough to 86 it and opted for crafts due to Rylee's condition. We had a great time, young and old!!! We added egg toss to the mix and that was probably if not the greatest new tradition, but the funniest!!!!
For those of you who do not know, I have an ENORMOUS FAMILY! My dad is the oldest with eight brothers and sisters. I am the oldest grandchild of 20 and Rylee is the one and only great grandchild. I grew up with my aunts and uncles and we started this tradition when I was very young. I remember going crabbing with my aunts and uncles in the early morning hours just to go back to my grandparents and boil and hide eggs. I was the only grandchild until my brother came along when I was 5 1/2. Needless to say I received a lot of attention and love. Not to say that I don't now, but I share a lot of memories with my aunts, uncles and grandparents that my little cousins did not have the privilege of sharing. My Paw Paw Harry passed soon after my brother was born, so I was the only grandchild that was lucky enough to know him. I have one picture of him and I together that I cherish and ironically enough there is a boiling pot and crab nets in the background of that picture. I loved to sit in his lap and have fond memories of his Dixie beer, Church on Sunday, chicken cooking in the kitchen, family dinners and most of all the SAINTS!! I am definitely a Maw Maw's girl and love that my youngest cousins have her living next door so that they can make some wonderful memories of their own with her! Boy is she special! My aunts and uncles were raised in strong catholic faith, tradition, giving and service. Each and every one of them have instilled that in all of us and I am very blessed to be a part of this family.... I am proud to be a Collins!!!
Thursday, April 14, 2011
EGD
April 13, 2011 Rylee scope procedure was at 1:45 p.m. Dr. Noel informed us that she would probably have to have bands. He said that it is very uncommon on a 2nd scope to not have bands. The procedure took about 45 minutes. They banded only 3 varices and her spleen has shrunk!!! Yes, great news. He said that they really did not even have to band but decided to do so because one of the varices was a little "suspicious" to bleed if they waited. Rylee did not handle the prep for the procedure well this time. She knew what to expect and she is very tired of it all already. She fought me and the nurses on everything!!! Of course things got better once her daddy arrived! We stayed in ICU for the night and she has done so well that they are releasing us straight from here today. Her next scope will be in 3 weeks with her follow up with GI and Hematologist in two weeks. Keep the prayers coming!!!
Tuesday, April 12, 2011
EGD Procedure Prep
April 12, 2011
Started off the morning by sending Rylee off to school. I left work half day in order to pick her up and pack for our prep at the hospital for her EGD scope tomorrow afternoon. She came home with the sweetest notes from her friend Victoria Crouchet and some friends. My child has the sweetest, most considerate friends and their parents amazingly surpass their kids! I have to mention that since the day we knew some "things" were happening with Rylee...the teachers, the administration, the support staff, students, parents......they all have been praying, supporting and have just been amazing. They want her to come back to school full time and are willing to do whatever it takes to get her back there! Covington Elementary is the best school for a reason!!!
We arrived at Children's a little after 8:00 p.m. to be admitted. We did not get to her room until 9:00 p.m. We are still waiting for the resident Dr. to check her out, her IV, her labs and her platelet transfusions to begin. I let her eat a Rice Krispie Treat just now due to her no eating after midnight rule. She is trying her hardest to keep her eyes open, but is slowly drifting. This is not going to be fun when it is time to put in the IV and she is fast asleep! The nerves are starting to kick in for me slightly. Any time your child has to be put under for a procedure it is scary and in her case there are risks for bleeding on top of low platelets. Wondering how many bands will be needed tomorrow and hoping that they are not worse.
I will post an update sometime tomorrow when I have time. It is slightly cramped in ICU room, so depending on the amount of room and outlets I have, I may not be able to post from my laptop.
I know you all will be praying for her! :)
Monday, April 11, 2011
Sunday Funday
April 10, 2011
We had a great family day! Rylee decided to paint her toes for the hospital this week and then immediately after......she played quarterback with her dad. No touch family football for now....she can only quarterback.
We decided to go check out Bogue Chitto Park in Franklinton, La. It is very close to the house. It is very nice with a splash park, play equipment, fishing/picnic areas, kayacking, canoeing, tubing, cabins, RV campsites and a BEACH!!! We walked the beach completely unprepared, but Rylee and Danny got their toes wet and talked about all the things we will do after her next procedure on Wednesday.
She is starting to get a little frustrated with not being able to do her normal activities, so we are looking for things that she can do that are still fun and something she would enjoy.
Looks like we will be spending some time fishing and swimming in the upcoming future!
I also found a wonderful Portal Vein Hypertension group on Facebook. It is nice to find other moms, grandmothers, families that are dealing with the same issues. They have provided more information and insight into Rylee's new diagnosis. I will definitely be taking their advise and researching.
hi, it's me!!!
this is rylee. i am feeling good thank you for the prayers. love you all love rylee rae.
Friday, April 8, 2011
Mommy has to miss the Field Trip...BOOOO
April 7, 2011
Today was the Zoo field trip. The field trip I have waited for and I had to miss it! BOOOOOO
Due to the time away from work in the last few weeks, I figured I should let Nana attend and make up some work. It was a very hard decision for me because who likes to miss out on fun with their child especially with all that Rylee is enduring lately.
We have passed the Zoo a gazillion times in the past two months and you can actually see the Giraffes feeding on leaves from the trees from the 6th floor playroom of the hospital. I must thank Dr. Firestone for that tidbit of information.
My best friend Ashley was nice enough to take a bunch of pictures for me and they turned out great. Rylee got to pet an elephant, watch a Giraffe potty while walking (the highlight of her day...GEEZ) and a bear snuggled in a tree.
The best part of her day was sharing it all with her best friends laughing, smiling and hugging, which is what she has missed so much the last few weeks.
Today was the Zoo field trip. The field trip I have waited for and I had to miss it! BOOOOOO
Due to the time away from work in the last few weeks, I figured I should let Nana attend and make up some work. It was a very hard decision for me because who likes to miss out on fun with their child especially with all that Rylee is enduring lately.
We have passed the Zoo a gazillion times in the past two months and you can actually see the Giraffes feeding on leaves from the trees from the 6th floor playroom of the hospital. I must thank Dr. Firestone for that tidbit of information.
My best friend Ashley was nice enough to take a bunch of pictures for me and they turned out great. Rylee got to pet an elephant, watch a Giraffe potty while walking (the highlight of her day...GEEZ) and a bear snuggled in a tree.
The best part of her day was sharing it all with her best friends laughing, smiling and hugging, which is what she has missed so much the last few weeks.
Rylee Goes Back to School
April 6, 2011
Today was Rylee's first day back to school. We have opted to do only half days at this point in time especially since her next scope procedure is next week.
She was so very excited to return to school and you would have thought that my child was a movie star!! Lots of kids, teachers, administrators welcoming her back with sheer excitement and hugs! I was so happy for her and she had the biggest smile on her face all day!
Thank you to all the parents, teachers, administrators at Covington Elementary School for your pure love, concern and support for Rylee and our family!
Today was Rylee's first day back to school. We have opted to do only half days at this point in time especially since her next scope procedure is next week.
She was so very excited to return to school and you would have thought that my child was a movie star!! Lots of kids, teachers, administrators welcoming her back with sheer excitement and hugs! I was so happy for her and she had the biggest smile on her face all day!
Thank you to all the parents, teachers, administrators at Covington Elementary School for your pure love, concern and support for Rylee and our family!
Wednesday, April 6, 2011
Follow Up Visits
Hematology and GI Follow Ups April 5, 2011
Today is the day we find out the bone marrow biopsy results and schedule Rylee's next EDG with Dr. Noel. It was a very hectic day that was suppose to start with our first appointment at 11:45 but turned into our first appointment at 2:15....yes.......TORCHER for the nerves! Hematologist, Dr. Morales, said that her bone marrow biopsy was fine. He will monitor her platelets and he may want to look in to immune issues later, but we need to get through the GI issues first. He said that this was a big puzzle...but the more pieces we put together...the more it made sense and each piece fit. The blood clot is from her tube/cord in NICU after her stroke. It is an unfortunate side effect. Her spleen enlarged from this because the blood is backing up in there from her liver and the damage the clot caused in her portal vein. The esophagal varices are also putting pressure on her spleen and anything viral that she has had is adding to enlargement as well. Her low platelets are due not only to the clot damage but the spleen is what holds platelets and her spleen is so big that it is swallowing her platelets. WOW!!! GI doctors scheduled her next EDG scope for Wednesday, April 13, 2011 at 12:30 p.m. We will be admitted to Dr. Morales (Hematologist) floor for the platelet transfusions and blood labs. They will band more varices if need be and then we will have to do again. They are going to have more surgeons come and talk to us about the Rex Shunt surgery they want to perform on her during the summer. Danny and I are researching, as is my uncle her pediatrician. We are very comfortable with her GI team at Children's. They want to get Rylee back to her normal, active, spunky self and they were very disappointed that she hadn't returned to school before today!!! :)
I have attached a picture so that maybe it will give a better mental picture of what we are looking at. The dark lines represent the damage to her portal vein. They want to take a vein from her neck and bypass from there to liver. This is the Rex Shunt surgery.
So off to talk to teachers/administration we will go!!! So basically the one "thing" that was placed in my child to save her is the one "thing" that has come back to harm her! Ironic how life works isn't it......
THE DAY OUR WORLD CHANGED....AGAIN
MARCH 20, 2011
Yes, I am back tracking a bit. On Sunday, March 20, 2011, what was suppose to be a fun day with my huge family boiling crawfish, laughing and screaming at kids, turned into a very terrifying experience. Rylee was admitted to Children's Hospital with a tremendously enlarged spleen, low platelet count and strep throat. Now most of you know that we were dealing with low platelets for approximately a month before being admitted. The doctors took enormous amounts of blood to test for virals which could contribute to the enlargement of her spleen, as well as performing CT scan, Chest X-Ray and Ultrasound.
On the morning of March 22, 2011, we were told that they found evidence of a clot in the portal vein of her liver with damage to the veins (varices) in her esophagus. All of the doctors did ask several questions about her stay in NICU and if she had tube/cord in her "belly". Of course since her birth is somewhat of a blur to me due to the stroke, Danny replied right away that she indeed did have a cord in her belly. The doctors were beginning to put the puzzle together day by day. Gastrointestinal doctors were very adamant about performing a EDG (scope) on her immediately to check for possible bleeding in her esophagus, etc. due to the varices. They would need to check her liver counts and urine. Somehow it seems that the although she did have a clot in the main vein between her liver and her spleen, her body somehow found a way to go around that clot and keep a flow to her liver. Danny and I realized that we were dealing with something more serious than what we expected and as I started to have panic attacks, he stayed strong and focused. With so many things being thrown in our direction and still no definitive answers for what is happening to our child, it became a guessing game and if the puzzles pieces would ever fit together or were there more to add? Does this all stem from her stroke in utero or is this a new develepment?
On March 24, 2011 our 10 year wedding anniversary, the doctors received most of the viral labs back and they were negative. They decided to let us go home and return for a bone marrow biopsy to rule out any other factors and to perform her first EDG to repair some of the varices by banding. We returned home, but were very fearful of what was coming......bone marrow biopsy and Rylee's first EDG procedure. We left the hospital worrisome, or at least I did, but we also left thankful that this was found. We do not know how long ago the clot happened. It could have happened when she was 3,4,5,6,7. We are lucky her veins decided to re route around the clot to keep her liver functioning. There seems to be a reason that we were sent for blood work in February for one minor thing that at the time seemed huge. Mommies instinct is NEVER EVER EVER wrong and this time Danny can not deny that!!!! :)
On March 27, 2011 we were admitted to the hematology floor where blood labs were drawn and Rylee received her first platelet transfusion. Her platelets need to be over 100,000 in order to undergo the EDG. Rylee's platelets have been ranging from 36,000 to 62,000. A normal person has a platelet count of 150,000-300,000.
On March 28, 2011 Rylee underwent her first EDG. I was a mess. It is very scary for me to trust these doctors with my most precious gift. I was scared for her, scared of the procedure and just plain out worried. She had the bone marrow biopsy first then she was flipped over and they did the EDG. They did find varices, that were in fact worse than what they thought. They banded them and we were told this would be done every few weeks until we could get the varices under control. We were also told that since her spleen is the largest they have seen at Children's Hospital, it is more than definite that she will have to have surgery. We stayed the night in PICU then were transferred to a regular room before we were released on March 30, 2011. We were so overwhelmed by the outpour of prayers, love and concern for Rylee and for us! The prayers are keeping us going!
Rylee has been so cooperative, very patient, compliant and of course spunky. She had me laughing in the PICU so much that I think they were ready to kick us out. There is something about a 8 year old calling the nurses station herself saying "I really gotta pee in here bad!!!" They came after that call!
These were the days our world changed......again......first her birth and now this!
Yes, I am back tracking a bit. On Sunday, March 20, 2011, what was suppose to be a fun day with my huge family boiling crawfish, laughing and screaming at kids, turned into a very terrifying experience. Rylee was admitted to Children's Hospital with a tremendously enlarged spleen, low platelet count and strep throat. Now most of you know that we were dealing with low platelets for approximately a month before being admitted. The doctors took enormous amounts of blood to test for virals which could contribute to the enlargement of her spleen, as well as performing CT scan, Chest X-Ray and Ultrasound.
On the morning of March 22, 2011, we were told that they found evidence of a clot in the portal vein of her liver with damage to the veins (varices) in her esophagus. All of the doctors did ask several questions about her stay in NICU and if she had tube/cord in her "belly". Of course since her birth is somewhat of a blur to me due to the stroke, Danny replied right away that she indeed did have a cord in her belly. The doctors were beginning to put the puzzle together day by day. Gastrointestinal doctors were very adamant about performing a EDG (scope) on her immediately to check for possible bleeding in her esophagus, etc. due to the varices. They would need to check her liver counts and urine. Somehow it seems that the although she did have a clot in the main vein between her liver and her spleen, her body somehow found a way to go around that clot and keep a flow to her liver. Danny and I realized that we were dealing with something more serious than what we expected and as I started to have panic attacks, he stayed strong and focused. With so many things being thrown in our direction and still no definitive answers for what is happening to our child, it became a guessing game and if the puzzles pieces would ever fit together or were there more to add? Does this all stem from her stroke in utero or is this a new develepment?
On March 24, 2011 our 10 year wedding anniversary, the doctors received most of the viral labs back and they were negative. They decided to let us go home and return for a bone marrow biopsy to rule out any other factors and to perform her first EDG to repair some of the varices by banding. We returned home, but were very fearful of what was coming......bone marrow biopsy and Rylee's first EDG procedure. We left the hospital worrisome, or at least I did, but we also left thankful that this was found. We do not know how long ago the clot happened. It could have happened when she was 3,4,5,6,7. We are lucky her veins decided to re route around the clot to keep her liver functioning. There seems to be a reason that we were sent for blood work in February for one minor thing that at the time seemed huge. Mommies instinct is NEVER EVER EVER wrong and this time Danny can not deny that!!!! :)
On March 27, 2011 we were admitted to the hematology floor where blood labs were drawn and Rylee received her first platelet transfusion. Her platelets need to be over 100,000 in order to undergo the EDG. Rylee's platelets have been ranging from 36,000 to 62,000. A normal person has a platelet count of 150,000-300,000.
On March 28, 2011 Rylee underwent her first EDG. I was a mess. It is very scary for me to trust these doctors with my most precious gift. I was scared for her, scared of the procedure and just plain out worried. She had the bone marrow biopsy first then she was flipped over and they did the EDG. They did find varices, that were in fact worse than what they thought. They banded them and we were told this would be done every few weeks until we could get the varices under control. We were also told that since her spleen is the largest they have seen at Children's Hospital, it is more than definite that she will have to have surgery. We stayed the night in PICU then were transferred to a regular room before we were released on March 30, 2011. We were so overwhelmed by the outpour of prayers, love and concern for Rylee and for us! The prayers are keeping us going!
Rylee has been so cooperative, very patient, compliant and of course spunky. She had me laughing in the PICU so much that I think they were ready to kick us out. There is something about a 8 year old calling the nurses station herself saying "I really gotta pee in here bad!!!" They came after that call!
These were the days our world changed......again......first her birth and now this!
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