Tuesday, May 26, 2015

It's a long process!!

Okay, everyone...this is taking alot longer than I thought!  Wait.  Yes, I'm waiting and getting ready to do more waiting once I go on the list.  I didn't  update sooner than this due to not knowing really what was going on until today.  I know that a summary letter was done for the State of Ohio transplant board, but my transplant doctor left for this week without it being signed.   I took a breath and the lady said we can have one of the other transplant Doctors sign it once he's out of surgery tonight.  People, that is some good news to this girl.  If that gets in the mail and to them maybe Thursday or so...they have 5 days to respond(usually it takes less than that for them to respond) then ...maybe i can be listed next week.  I didn't realize that all of these steps take time.  Everything needs checked, checked again, and yes checked once more.  I realize the importance of making sure everything's in order, I'm just ready to get the ball rolling.  We have been here since April 2 and I know it'll be between 3-6 months post transplant before coming back home.  I'm learning quickly, very quickly, patience as a patient is the key. In reality, things to me seem like they are moving like molasses (lol), but I am very blessed to be already this far in the process.   

I have got to meet some special people in the past few weeks and keep in contact with them.  I've got to meet and talk with a sweet girl who has had the intestinal transplant. I got a chance to ask her some questions I had and got to hear her story.   A week later, I met another sweet girl who also is getting ready to face an intestinal transplant.  Then back at the end of April when I was being discharged from having the line infection, I was on the elevator and meet a Dad who is here from Mississippi with his son.  He gave me his business card to keep in contact with him.  I emailed him last Monday to see how things were going for him.  Thursday morning, i was in the breakfast room with the kids and the lady from the front desk said-hey i checked in someone whose family had an intestinal transplant!   She said I told them about you!  I said hum... I wonder if it was this guy's son?  She said if i see him, I'll be sure to introduce you two!  Afterwards, I came up to my hotel room and glanced for the morning through my emails and there was one from the father saying-"we are staying at the Marriott TownePlace Suites in Westlake.  The lady at the front desk talked about a girl that fits your description, I don't suppose that would be you, would it?"  They were discharging his son from the hospital and would be staying here.  I responded  back with a YES.  Thankfully they were able to help him without having to do the transplant, but needs to still stay for 2-3 weeks.  I haven't had the chance to meet him, but have meet with his parents and his wife.  They are so kind.  I am so thankful that God's allowed my path to cross with each of them.   What a blessing!!!

They have had some beautiful weather here! The kids have enjoyed having Shane take them to the metroparks and Lake Erie.  We have enjoyed the past 3 weeks or so watching baby gosslings on our way to and from the hotel. They are losing their baby fuzzy look and aren't as cute, but still fun watching them grow.  It was neat watching them try to jump on the curb to be with Mama.   They would try and miss and try and miss.  You just wanted to go and help lift them up into the grass, but no way that's gonna happen with Mama cranking her neck all over and hissing.  Eeks!   Now we are enjoying ducklings this week!  I'm waiting for one of the kids to have bath water in the tub and one floating around.   I have some kiddos that would try if they could!  We are enjoying being togther and the memories we are building together with time we have before the transplant.  Lots of precious memories with my precious family! God is so good to me and I AM A VERY BLESSED PERSON! 

I have been having my challenges and take it a day at a time.   I get worn out very fast.  Trying my best to be extra careful with my line also.  They gave me some extra ideas as safety measures just to help before the transplant. We were able to have some bone strengthener thru my central line which is benefical since I have issues with that already and post transplant could have more.  The transplant doctor was hoping I could my numbers up high enough to do the medication before the transplant.   We got it up there, so glad that's one thing thats behind me.  Bad thing... Side effects from this medication-nausea, vomitting, fever, flu like symptoms-body aches, muscle pain, bone pain, joint pain, and headache.  Sounds fun!  NOT!   And yes, it hit me.  When I called the on call endocrinologist to let them know I was still having the symptoms and she said oh... they could last up to 14 days.  Thankfully, they didn't last that long!  My In Home Care nurse came today and had an issue with my central line.   She had labs to draw for my TPN, and could't get blood to pull back.   I haven't had issues with my line.  It's flushed beautifully and been fine.   She called and I was told to go to the ER, at main campus.  That was an experience.  My purse was checked and I had to go through the metal detector, along with everyone else and then be patted down.   I wasn't the only one.   Every person entering through the ER had to.  No one can just go through the sliding doors to enter.  Not sure if that's something new or not, but it's a good precaution.  

I can't say thank you enough for all of you who have been praying for us!! It is greatly appreciated along with all the emails, calls, and cards.   Also, big thank you to each of you who have helped us financially.  Things can add up quick with the hotel, food, gas, bills, and the list goes on.   No matter what you have given, each amount that we've recieved is a blessing!!! A huge blessing!   Thank you so much!   Some have asked if they can share my blog or funding page with others?  Yes- the more help, the better!  Thank you for of you who have shared it! 

So glad that God is with me each step I take.  If it weren't for Him, I would not be here today.   He is beside me and I don't ever want to lose my grip of having my hand in His.  I don't want to get too far behind Him or ahead of Him.   He is my strength and has brought me this far and will not leave me.   His love is far greater than I could ever love!   

Have a wonderful week! 

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