3rd EGD

May 3, 2011

We were admitted to the hospital on Monday evening following our GI appointment and lab work. We stayed on the 5th floor this time due to overcrowding on the Hematology floor (4th floor). The nurses were slightly confused as to what, who and when. Rylee was in a GREAT mood Monday night. She walked across the parking lot to watch girls practice softball and even retrieved a few balls for them. A little while later I spotted her and Danny walking further away from the hospital grounds and followed them only to notice that he was taking her to the Audubon Tennis Court. The court was of course locked, so he searched the grounds for tennis balls and we all played ball for a while. We tried to keep her away from the room as much as possible just to help her anxiety and anticipation. It seemed to help a lot considering the laughter and mood she was exhibiting. That soon came to end when the nurses had an extremely hard time getting her IV in her arm. They tried several times, it was the 4th try that seemed to work, but they could not draw blood. Lab had to come draw blood and I thought she might jump out the bed and run, but Leroy from the lab was WONDERFUL. He talked to her, made her laugh and he even put the tennis balls in her shirt (the price he had to pay for sticking her again) and did a jig! Boy did she laugh and so did Danny and I. She finally went to sleep at around midnight and was given platelets at 5:00 a.m. Danny and I questioned the nurses a lot due to the confusion when we were admitted to the floor and our gut feeling was confirmed at 8:00 a.m. The day shift nurse informed us that the night shift nurse was suppose to give her 2 units of platelets and only gave her 1. That is what Danny and I kept questioning but were informed she was receiving 2 units. I thought Danny's head was going to explode when the day shift nurse told him! It delayed her scope only by half hour but she did need to receive the rest of her platelets during the procedure and have another IV put in her other hand. Poor thing had two IV's and couldn't move either arm. She walked her down to the procedure room at 10:00 and at 10:25 Drs. Monagus and Noel came to talk to us about the findings. They did not have to band any varices this time!!! They did see a small varices but it was way too small to band. She will have to have another scope in 5 weeks. They did find a small ulcer and did a biopsy to see if antibiotic treatment is necessary. She will be on Zantac now for the ulcer but the good news is that she can now swallow pills. Which she seems to enjoy much better than liquid! Her esophagus looks like a normal esophagus at this point as well. Her spleen has not gone down since the last scope which is not great news. If it does not go down, we are definitely looking at surgery in the summer. She needs to have IVIG procedure before her next scope as well. Her hematologist seems to think that she has some antibodies in her blood that are eating up all of her platelets. This will be done in the next few weeks before the next scope. It is a two day procedure where she will be hooked up to an IV for 8 hours each day. We will have to spend one night in the hospital and then go home after the second 8 hour treatment. Hopefully this works to raise her platelet level.

Rylee is trying her hardest to hold up. She is starting to have a really hard time dealing with all of her medical issues, being in the hospital, school work, being away from her friends, etc. She does not understand why she has to go through all of these things. She hasn't complained and just goes with the flow, but Danny and I have noticed she is not herself. Danny and I are trying to keep things together the best we can for her and dealing with this ourselves. She is struggling but still smiling! The doctors said that this is all way too much for an 8 year old to handle but she is one of the most courageous, brave and strong little girls they have ever treated! I thought I was suppose to teach my child about life, but she is definitely teaching me more than she will ever know! We could not be anymore proud of her! Just keep praying for her!

Dr. Morales Appointment

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.

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!!!

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!!!

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! :)

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.