Weekend at HOME for Bekah

[maureenreynolds]

This is such a special treat for the whole family....together for two nights in their own home. Despite two weeks of a wonderful vacation, I know how happy "I" was to be in my own space again. I suspect it is a little bit of heaven on earth for Sharlah in particular.

"Bekah is home for 2 nights. Wohoo! She is so happy that the smiles are coming and coming. We know we have to return for Dialysis, but at least we can enjoy a small break. Michael was so excited for us to be home that he stayed up until 10pm just to see us. I miss him so much!

We took Bekah to PetSmart today. I was a little hesitant because she had to use a walker and has her NG tube, her chest lines, and her colostomy all showing. I tried to hide them, but it was hard because they are so obvious. I told Bekah that people might look and stare but only because they knew she was very sick and they are only used to seeing sick people at the hospital not out and about. She said that was ok. So she went and had a blast. Pet Smart was like a zoo to her!

"The LORD bless you and keep you;the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace." Numbers 6:24-26 I look at Bekah today and feel so very blessed that she is here with us. It makes me think back through this past 6 weeks and know that we would have lost her if it weren't for the grace of God. It is hard have faith when there is so much turmoil, but even when it felt like our faith was hanging on by a shred of string that was about to break, we still prayed for God to be with Bekah no matter the outcome.
I can't imagine not having faith, but at the same time I can see how easy it is for the anger to come -when people are struggling and things don't change or if they do, it is for the worse. I don't know what other people do, but I just prayed for Mercy. I feel like God gave us mercy. Here we are able to come home for awhile! (I know there are so many who do not have that same blessing, and my heart and love go out to their families.)
We believe no matter what. ~In God we trust~Sharlah"

"Bekah loves cards! Bekah is staying at:
UMC/Patient: Rebekah Reynolds Rm: 6524
1501 North Campbell Ave
Tucson, AZ 85724 "

[dugarner]

I've been keeping up with Bekah's CaringBridge journal, this was wonderful news! I'm so glad they were able to get all those lines out. And her attitude about it being OK if people stared was so refreshing. She's really such a resilient girl!

[Starlite9711]

This is so great to read this morning!! Thanks for sharing with us Maureen. Bekah is in my prayers!!

[whatnext]

this is such wonderful news, Maureen! we'll keep the prayers coming.

[SharLamb]

Wonderful news. And bless your hearts....one and all. If The Tests were easy, it wouldn't be True Faith. You are a witness to the angels.

[Aino]

What a tremendous story to read. They are all such an inspiration. Hope they can enjoy their time together.

[dorah]

How awesome for Sharlah and Bekah. And the whole family. She is such an inspiring and brave little girl.

[digigrandma]

Sharla's words on a Sunday morning are the best sermon on faith I could ever hear, Maureen. Thank you very much sharing them with us.

I am so happy to hear Bekah had this time at home and was well enough to even go on a field trip to PetSmart, bless her heart!

[DonnaNJ]

God bless that little one and her family.. what wonderful news on a Sunday morning.. thank you so much Maureen for sharing with us

[jk703]

This is wonderful! A visit to Pet Smart -- and with all the people! To be able to be strong and do what you like. That is so inspiring and brave of Bekah!

Blessings-- and I hope they enjoy their together!

[earlofoxford]

It's so good to hear this news. I know Bekah's entire family is enjoying being together. May she continue to improve.

[quilter422]

what a treasure to have this weekend! prayers for continued healing for all of them!

[anxela]

How amazing!

[grandma lynnie]

How wonderful that they can all have this little bit of "normalcy" in the midst of all they've been through. What a difficult but inspiring journey they have been on.

[Kayleigh]

Oh so good to hear today!! What a blessing for her to be able to enjoy some normalcy.

[champsarahjoy]

What great news to have her be able to be out, even if just for a bit. Praying for you all.

[connieg]

Glad to hear this, a weekend at home will do them all good, specially Bekah.

[kathie02]

Bless her heart! I can't even imagine how happy she was to be home for a bit...hoping that she is home for good one day soon. This news made me smile!!

[nativescrapper]

So glad to hear this. Will keep her in my prayers.

[maureenreynolds]

Sounds good, doesn't it! Just to have time at home and to have a friend for company. Dick and I will be out there in early May, whether in Phoenix or Tucson to just give her a couple of hugs and ears to listen. Maureen
~~~~~~~~~~~~~~~

Bekah was able to really enjoy her few days home from the hospital. I think we crammed as much as we could in which wore her out!

Bekah checked back in early Monday morning. She began Dialysis, her weight was good, but the BUN (toxic) in the blood was high. We are lucky enough to have my friend, Izzy, (from my crazy youth) fly into town from Penn just to sit and help me this week. It is so wonderful to have an extra body just helping pass the time and be here with me. Because she is here, I was also able to have Michael come up for a few days too! Rich's mother will drive up to take him back tomorrow.

Bekah has another surgery scheduled for this Thursday. She is starting to get a little apprehensive from all the surgeries. (This will be her 14th all together- 10 of them since Feb 26th.) Allison, her child life specialist (whom she loves) will help try to make it easier for Bekah. I am not sure if they will close up her stomach or just tighten the vortex patch to tighten the wound, bringing it closer. They will decide when they get a look inside of her.

Psalm 30:5
Weeping may remain for a night, but rejoicing comes in the morning. Bekah's Adeno PCR came back higher then last week. (16K jumped to 65K) Dr. Graham says he won't start her on cidofovir, because of the damage to the kidneys is causes and suppression of the bone marrow. (Which is only 10% full.) But if the PCR increases higher then 150K, he will have to start her on it. This too shall pass.

[echogirl]

I can't even imagine how hard this is for Bekah and all of her family. I am so happy she is such a strong fighter. Many toughts and prayers with you and yours Maureen.

[justmp]

I missed this when you originally posted, and I'm sorry I didn't get to share int the joy of Bekah's being home for a couple of days. We continue to pray for her daily.

[ang66]

So glad she could be home for a short time. I will continue to pray for her and her family> God Bless.

[FlowerGirl]

What a great treat for everyone

[maureenreynolds]

Another good (AND frustrating!) time for the family. Oh the bureaucracy that often ends up trumping common sense. We all run into it and usually the underlying reasons have a sound basis but... Well, you know what it's like! Maureen


We made it home! We dropped off my friend Izzy on the way and she will fly back to Penn state. Thank-you so much! She was absolutely wonderful this week.

We almost didn't make it home because of insurance reasons. They didn't want to discharge us only to readmitted on Monday. So Dr. Graham went above and beyond and called the director of Med for United and got approval. Yeah! So that was great. They had a long talk about how Bekah is just in for Dialysis because she is not yet listed as Chronic. She is in the acute phase for Kidney failure and there isn't a ped out patient clinic for that in Tucson. We had been planning and pushing for her to move to Phoenix Children's where they do have an out patient clinic for peds, but Dr. Graham found out in that same conversation that our insurance doesn't cover that. ?! They are out of network. Also we are required to go to Tucson for Dialysis since it was a bone Marrow Complication. !! (indirectly)

So I this week we are going to start to make phone calls to try to get our insurance policy to be changed mid year. (plans go from Oct to Oct)

Please specifically pray that we are able to somehow get insurance approval to move to Phoenix for Dialysis and she can begin treatment there. If she was able to, we could move home. Our family has been split for 6 of the last 7 months and it has taken a heavy toll on the us. Don't get me wrong... weekends are wonderful, but we still want to move back home and be together as a family. Bekah loves and thrives sleeping at home and I get to snuggle with my 4 year old son, Michael!

Side note: Adeno PCR came back at 90K so Dr. Graham is most probably going to start the dreadful Cidofovir on Tuesday. That will cause more injury to the kidneys and her suppress the stem cells more. ---- I am trying to be positive but sometimes it is hard. It just means that our journey continues.... I pray for strength and mercy. Each smile of Bekah's get us through another day.

[DonnaNJ]

Oh Maureen.. I can't imagine how hard this is for all of you.. it seems with every bit of good news there is some bad to go along with it.. glad to see Bekah is looking better. I'll continue to keep all of you in my prayers

[beehive50]

Well, I'm late to this thread, but my prayers continue for Bekah. I was happy to hear about the wonderful weekend home, especially Bekah's enjoyment of her outing to the "zoo"! Made me smile... and, now to get that dang insurance squared away so the whole family can be home! How dreadfully annoying and frustrating, to say the least! More {{{hugs}}} and prayers...

[kathleen.summers]

So glad you made it home despite the difficulties. More prayers and now for the insurance as well.

[sawdust]

Praise the Lord!! Prayers continuing for Bekah, Sharlah and Rich and all involved in her care!!! May God clear the way for her to get through these pesky insurance people!! Ugh!