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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