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Thursday, June 30, 2011
Please pray they figure ALL of this SOON!!!!
Nathan is having a blast or so they say in the great state of Wisconsin!! It's a little weird to have 3 kids in 3 different states! Marshall is doing fine with his splint on his ankle and it is not broken or fractures just a really bad sprain with some torn ligaments.
Counts continue to be stable, although today they took a bit of a drop, but not out of the regular range....
Wednesday's (day 33) Counts
Thursday's (day 34) counts
I hope and pray we see no more drops in the counts!!
That's all for now...waiting to see if we will have the MRI done today or not!!
Thoughts for the day:
Our life's a stage, a comedy: either learn to play and take it lightly, or bear its troubles patiently.
Tuesday, June 28, 2011
Marshall seems to be doing OK with his ankle it hurts like heck he says, the ligaments on both sides are torn up. I tell you if it's not on thing it's another.
Nathan is leaving tomorrow to go to sibling camp at Faith Lodge in Wisconsin. I'm going to be worried sick while he is gone, but it's hard to say no when it's something he really wants to do. He has always been so shy and since we've been here he has come out of his shell. They leave tomorrow at 1 and will be back Friday around 1 or so too! Please say a prayer for him on this trip.
Well going to take Mimi girls temp then hit the bed for a quick nap!
Monday, June 27, 2011
She is still having really high fevers, just this morning it was 104.5....so frustrating to not know the cause of these high fevers. In a way you want to know so they can treat them properly, but then you don't want it ti be anything serious!! The blood in her urine continues along with blood clots. How I so wish this would be a mild case. I can't really tell you what color the urine is as she has resorted to wearing pull ups. (God knows she is going to get me for putting this out there) But she said she has no control over her bladder and she says it doesn't hurt when she is laying down to pee. She was able to take and keep down the Pyridium. Which I really think is helping her pee pain free even if it is in a pull up! At least we are not getting up to go potty every 5-10 minutes cause she feels like she has to go!! I changed her a while ago and a few minutes later she had a smile on her face, I asked her what that was for...she said I just peed....I'm so glad it was pain free. I hope they figure out some things and soon. I am trying to stay positive, but given our history with this it just makes me so sick to my stomach!!! Another development is that her right leg is hurting. It started with her knee hurting and now it is most of the leg. I told you to hold on!! It was going to be a wild ride.. Makes me remember when she was little I think 4 and she got her first Barbie VW bug powerwheels we found her a sign that said... sit down hold on and shut up! Although I'm not shutting up, but I feel like I'm hanging on for dear life.
Then on the home front I get a call from the hubby saying Marshall hurt his ankle at church playing basketball, that was Sunday night. This morning he calls and said it was all swollen, so I told him to take him to the pediatrician...so he had xrays and all done. Not sure what it showed but regarless he needed a boot if it is fractured they will put a cast on it. I just got a call from Ty he was at the medical supply place to get the splint.....$85 freaking bucks for an air splint...oh the joys of motherhood.
Well I better run I'm waiting on the docs to come and assess her.
Her counts remain really good
Yesterdays were a little high and had me concerned.
she's still getting red cells and platelets thanks to the hemorrhagic cystitis
Sunday, June 26, 2011
It is now that I sooooo wish that we wouldn't have come for transplant. I know that there really wasn't much other choice. Her counts were failing really badly. I still just keep blaming myself!! If only we wouldn't have come to transplant, my beautiful baby wouldn't be suffering!! They keep telling me they have changed the way they deal with this and that it shouldn't last no where as long as Marshall's did...but I don't see them doing a damn thing here.
Right now we have resorted to wearing a pullup and she is sleeping, she said she pees on herself when she is relaxed and it doesn't hurt as bad... I told her to just go don't worry that you are wearing a pull up we will change it!!
Well I guess I've vented enough for now anyway.
I don't have anything positive to say, not at this time anyway and I don't know when I'll get back for an update...going to pray and BEG God some more....although I have been... I just don't think He hears me or wants to hear me!!
Friday, June 24, 2011
I know we are not to question why things happen, but I just can't help it. Marshall went through this and had a seriously bad case of it and that is why he staid in the hospital for 5 solid months! It was one of our worst night mares come true...we were so hoping that she would not have gotten this. I can't help but feel angry that this happened. Why do I have to watch another child suffer so. I know that there are reasons for everything, but this was the one thing that I asked and prayed to God to not let happen. The doctors have reassured me that their treatment has change a lot since Marshall's day, but still it is just something that NO one should have to go through.
Anyway enough venting I am a mom and I gotta do what I gotta do to get my child better out of here and all the way back home to Louisiana to see her doggies Chico and get her a new toy poodle puppy!!!
Trusting in Him,
If you have faith as a grain of mustard seed, you will say to your
mountain, "MOVE!" and it WILL move... and NOTHING will be
impossible for YOU!
- Matthew 17:20
Counts are still good
Thursday, June 23, 2011
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Wednesday, June 22, 2011
As we were sitting down to dinner I get a text from Amelia.... My heart sank, my stomach did flip flops and I felt like I was going to throw up!! Here we go history repeating itself, one of my biggest fears has come to!! She is now having blood (a lot ) of blood when she pees!!! I can't help but blame myself, I know it's not my fault but it's just the way I feel. It's hard to explain...
We were so hoping and praying that this transplant would be so different and that things would go differently and smoothly and she would be out of here going back and fourth to clinic, but it doesn't look like things are going to work out that way, we may not even be home in September as we had once hoped before either. I know people say look on the bright side and stay positive... Well truth be told, having traveled this road once before... I just can't see a freaking bright side!!!
Tuesday, June 21, 2011
Day +24 was a day that felt to me a waste. All she did all day long was sleep. I'm sure not by her choosing. She has been getting benadryl for premeds and then she is getting ativan for her continued nausea, which unfortunately is brought on by the extremely strong antibiotic. She was up maybe four hours or so which started at about 5:30. Then all night changing the bed pad and underwear.(she will kill me for this one day). Along with the nausea comes diarrhea....not fun...we had tried to switch some of her meds to oral, but she is unable to keep it down. So I won't worry about all that right now, because I know that she needs this strong antibiotic to get rid of what they think is cellulitis in the jaw, cheek and under the chin area!
So today was a little better, we tried to get out the room and do a lap or two..but we were only able to do a half one, so we stopped and picked out the movie Bridge To Tarabithia. She watched it and stayed awake through all of it. Her bone marrow biopsy results came back at 15% cellularity, which is right where they expect it to be at this point and she is all 100% donor!! Meaning it is working and her marrow is all donors and not any of her own! Great news. Her counts for today were
HGB 9.9 and
I am sure she will need platelets tomorrow.
She is unfortunately back up on her weight because that is one of the meds that they tried to switch to oral, lasix. SO today and tomorrow we are going to be trying to play catch up to get her back down to where she was.
I am completely exhausted, I've been here for 4 nights, only leaving long enough to run the the RMH to get a shower and back again. I totally, at this point, feel that two steps forward 4 steps backward saying. I really want to see forward motions from here on out. We just need this infection to go away. ENT said if it would abscess or go to one "pocket area it would be a little easier because then they could go in to the OR and drain it. They are keeping the strong antibiotics going as to avoid any MRSA! So please continue to keep her in your prayers. Pray that we find that magic brick that leads us down the path to getting out of this hospital!
Thought for the day:
Don't ask for a light load, but rather ask for a strong back.
Sunday, June 19, 2011
Friday was bone marrow biopsy and that afternoon and Saturday were two steps back with the way she was feeling. She slept all day and didn't want to walk at all. :(. Saturday night we did get her out for a walk around the hall. She was still running fever really high on Friday night of 104.2. That prompted the doctors to get Infectious Disease doctors involved. They came in on Saturday morning and started to examine her. They ordered another CT exam, this time of the neck and abdomen. Well they had to make her drink that nasty contrast just as she was finishing the contrast they come in and tell her that she can have the test because she just had one and they need to be 72 hours apart. She was upset and I can't say I blame her!! Any way on Sunday morning the ID doctors were back I mentioned to them the puffiness in her cheeks, she looks almost like she has the mumps. When she talks she kind if sounds like she has marbles down there when she talks. The CT was done Sunday around 1:45. Anyway to make a long story short we think we know where the fevers are coming from. They think there is an infection in the glands under her chin and on the sides of her cheeks and neck. It has gone down some but one of their concerns is MRSA!!! Please pray that this all resolves it self!! With out any complications!!
Sunday afternoon was much better. She walked 10 laps around the unit!! She is getting back to where she was. Her fevers have not been as high at night as they were. Well I hate to cut this short but I'm typing this from my phone because Amelia wanted me next to her and the computer is too far away from her!
Oh counts for today is:
Friday, June 17, 2011
My dad stayed with her last night and I went for a good night sleep at the RMH! I got up early to be back at the hospital cause today is day +21 and that means a bone marrow biopsy to see how much of her donor cells are in there working and doing it's job! We pray for 100% but know that at 21 days that is not likely, but this is the crucial one to see if the transplant is taking! Meaning is this her on marrow or all the donors working...this is where we want to see just the donors in there working.
She did great for the biopsy, it was done in peds sedation and though I usually don't wanna be in there with them doing it this time they just kind of started with me right there...I had to look away..it just kinda makes me sick to my tummy.
When we got back to the room the doctors stopped by doing their normal rounds and said that her CT scan from yesterday which was read by the radiologist looks all clear. So the spots on the lungs may just have been some fluid starting in there! yay we hope and pray they continue that way and she continues to heal in all directions. Right now there are a few thing we need to work on before we can talk about being discharged, one is switching all meds to oral meds, second we need to be eating and drinking a little and most importantly we need to be fever free!! That is our biggest hold up right now is the pesky fevers and no one know why or can figure them out...they just keep saying it's normal around here!! Just a bummer! Her counts for today with out the GCSF were really good...
6/16 (Thursday counts)
6/17 (Friday Counts)
Hope you all have a wonderful weekend. Blessings.
Forever in His hands,
Thought for the day:
Life is like a game of cards. The hand that is dealt you represents determinism; the way you play it is free will.
Wednesday, June 15, 2011
Well that's about all for now...if there are any changes I'll let you know. For now thank you for your continued prayers and support it truly means a lot to us!!
Verse for today:
“I call on the Lord in my distress, and He answers me.
thought for today:
Prayer has the power to change mountains into highways.
Wesley L Duewel
Tuesday, June 14, 2011
Well I am being interrupted by Nater to play on the computer so I guess I better run....
Monday, June 13, 2011
Sunday, June 12, 2011
Yesterday was an up day for her. This morning when I got here she was still on that up side. She was making me wrap her in her blanket on the side of her bed and said look I'm big chief Indian...and she would just giggle away. One of those good ole deep belly laughs!
She sat up on the side of her bed for a good while and I cut her nails they were super long and aggravating her. Earlier in the morning she had been wheeled down with my dad to do a CT scan of her sinuses and her chest. Well this is where the low comes in! The sinus are clear thankfully BUT...there is fluid around the lungs and a few spots on the lungs..nothing big they said. They have upped her lasix to 6 times a day to help get some of this fluid off of her and added yet another antibiotic. She looks better than she did yesterday and she said she feels better than yesterday. On another upside is her counts they went up to 1.7 for her white blood cells and her ANC is 1.3, tomorrow if the count is still about 500 (anc) then we are walking the halls...getting her out of this room!! They said that once she is up and moving a bit more that too will help with the fluid in her lungs. She got back in her bed around 2:45 or so and she has been there for a while but she has been awake and the bed is at an upright position. I told her she could rest today but I am going to push her tomorrow to walk as much as she can. We will also find a wheel chair or a wagon, so she can take a ride out in the hallway.
this picture below is of her playing Wii yesterday.
For now we need to storm the heavens for this fluid and spots on her lungs to go away along with these high fevers!!!!
Thanks for keeping her in your prayers they mean so much to us to have all of your support!
Saturday, June 11, 2011
Her counts are up to 0.7 and her ANC is 600 if it stay up for 3 days in a row she will get to go outside and roam the halls with her mask on!
While we were visiting her today, I say visiting because she wanted her papaw to stay not me, any way she got up and played the Wii that is in her room for almost an hour and a half to two hours!! I took a video of it I will try to upload it from my phone!
She is moving right along, she is still having high fevers, but they day that is to be expected as the body is fighting the new cells coming in, but thankfully and prayerfully those cells keep fighting their way through!
Thanks again for the continued prayers, they are working!
Friday, June 10, 2011
We still continue to see small and steady improvements. Today we are at 0.4 on the white cells. First thing this morning we had a visitor..Our main FA doctor...Dr Wagner, just stopping in for a visit to see how things are going. We told him we were at 0.4 and he said yeah!! He also said that that is great and that her counts would be a bit slower growing in do to the mishap with the cells, but he was and is beyond pleased that they are indeed GROWING!! She continues with the fevers some as high as 104, there is no explanation for those as there usually isn't. Cultures are still negative which is a plus in our favor. Her blood pressure is OK, as she hasn't been taking the oral amlodapen for it...I worry about her not taking the ursadial, that is for her gallbladder and liver. So far though she hasn't had much complaints on the belly other than nausea...let's pray that continues that way. Dr. Wagner is pleased and defiantly wants her to beat Marshall out of the hospital...umm yeah so would we, we would love to see her out in about two weeks. That would be a dream!!!
Please continue to keep Chloe in your prayers..she is doing pretty good, I know she was having some belly pain and we would like for you to pray that this goes away and that she is able to get out of this hospital soon!! It's funny how FA connects you so closely to people you have never met before!
Ty's visit came and went, way too quickly I might add. He will return some time in the late part of July with Marshall. They are coming up for Nathan's birthday and if Amelia is doing well we will probably have them fly home and take Nathan with them as school will be starting on Aug 8th for him and I really hate for him to miss a month or so of school. That will be so hard to be away from them all and not to be there to help him in those first days and weeks of a new school, thankfully it will still have all the same students with him!
Thanks in advance for your continued support and prayers they do mean a lot to us.
Hope you all have a very blessed day!
Thursday, June 9, 2011
Nate at the Grizzly exhibit
The big huge mosquito
The sun setting on Mimi's birthday...see the metro dome in the back ground (the one the roof collapsed on)
Sun set at the zoo
My girl on her birthday smiling!
Keep growing cells! We should be getting a chest x-ray sometime today. Hoping and praying that it's all clear and that her shoulder is just something muscular! The main complaint right now is the mouth, tongue and throat. Hopefully and with lots of prayers those will heal sometime this week or the early part if next!
Keep those prayers coming they are working !
Tuesday, June 7, 2011
She did sleep a little better through the night, she really needed. She has kind of been fighting her sleep. I tried to explain to her that her body heals as she is sleeping. I know that she is in some pain too, but I really would like them to start to wean her off of the dilaudid...that is some strong stuff and I don't like the side effects. Marshall became addicted to that stuff and it was pretty horrid to watch him come off of it. She has been having presistant fever for about a week and we want them to go away!! She is still having the mouth sores and tummy aches and in her throat too.
We were hoping that we would see an improvment in the white blood count, but again today it is 0.1, again we are still early, as they tell you not to expect anything till between day +14 - +21. One could hope though can't we! She has gained in her weight which I am hoping we can get it down soon.
Right now we just ask for prayers for her mouth and tummy to heal and these sores to improve quicly...I think once we get her over that hurdle she will start to see more improvement daily. She is a tough cookie and of course for those cells to GROW!!
My sweet little girl, your are a true blessing in my life and I love you! I know that this is not a birthday that anyone wants to have and I promise next year on your birthday we will have the biggest and longest celebration, starting that celebration on your re-birthday of May 27th an almost two week celebration, but it and you are so worth it!!!! I LOVE YOU. Mommy.
Blessings everyone! Believing in Him and having FAITH....
Monday, June 6, 2011
I'll try to update you through out the day!!
What can I say? I just want to run in the bathroom and scream and cry. Life sometimes just isn't fair and I gave no idea of how to help.....
Please pray for better days ahead...and a little less hard headed kid!
Sunday, June 5, 2011
On an up note for today she started taking sips of milk and then she ate tiny bit of chocolate pudding, it wasn't a lot that she drank or ate but that is a big improvement that she is wanting to even try at this point. I went out and bought her some chocolate syrup so she could have some chocolate milk. She doesn't like the chocolate milk that they have here as it is made with low fat/ no fat milk. She likes it with 100% whole milk, actually there is no where around here that you can buy whole milk chocolate milk!So we will make it for her when ever she is ready for it.
I'll try to let you know how tomorrow goes. Thanks again for your prayers and warm thoughts!!
Saturday, June 4, 2011
Thursday, June 2, 2011
Wednesday, June 1, 2011
I'm going to watch our nightly ritual of "The Nanny" so please keep her in your prayers for comfort. I will try to update more tomorrow! We are also praying for those cells to grow, grow and GROW!!!