We are going home!

The nurse and resident just came in and told us we are going home today!  They said they might "tank him up" with one last blood transfusion but we should be out of here sometime today.  We are going on a tour of the clinic before we leave and they are setting our appointment time for  Friday.  This Diamond Blackfan Anemia is so rare they are still trying to figure out who our primary hematologist will be but there is a doctor at the clinic who has worked with it before.  We really pray that we get the perfect fit for James Thomas.  We will be seeing this doctor so much and working so closely with them I really really get nervous about who they choose.  Please pray for our new doctor.  

They said we will be at clinic all day Friday but at least tonight we will all be sleeping in our beds at home!  James' dad Papa has been with us since Sunday.  He is going back to Nacogdoches this afternoon.  I know James has enjoyed spending time with him.  We are glad he has been here. Nancy was here on Friday and went home on Sunday.  She is coming back today with Jim to help us out at home.  We are so glad she will be with us the next few days.  She is so good with James Thomas.  Another thank you to my parents who were with us and went back last night.  We appreciate all of our parents love and support.  James and I are truly blessed and we have a lot to live up to.

I was in the Family Room this morning getting a drink and a danish when I started talking with this dad.  He told me they were admitted on Monday and last night they were told their ten year old daughter has cancer.  Today they will do her biopsies to find out the exact type.  He told me he had to tell her the news today.  Can you imagine telling your ten year old they have cancer?  Our prognosis has come at such a young age that James Thomas will never know any different.  My heart aches for this family.  Thank you so much for the prayers for James Thomas but PLEASE pray for all the kids on this 9th floor.  It is a devastating floor and each day a new family is brought in.  You can see the anguish and pain in their eyes.  This verse just keeps popping in my head, "For I know the plans that I have for you declares the Lord, plans for peace and not evil, to give you a future and a hope."  Jeremiah 29:11  As we leave today I pray that we are never readmitted to this 9th floor at Texas Children's but I will pray every day for each child and family that steps foot here.  They will be brought to their knees and I just hope they will look up!

Love to all of you.  We are forever changed and your support and encouragement has made this horrible experience a joyful one.  

Keep your fingers crossed!!

I LOVE my Pumpkin!

    Thank you mom and dad for coming!

A quick update on our day.  They started the morning by drawing blood at 4:00 a.m.  The awesome thing about the pic line is that none of us woke up!!!  The nurse came in at 6:30 and I asked her if she drew the blood.  She said they came in and drew it and none of us woke up.  I can't tell you how amazing that is.  The worst part of our entire experience has been drawing blood.  His hemoglobin had dropped to a 7.1 so they had to do another transfusion.  They said this was expected after surgery yesterday and with all the blood they have been taking.  They aren't going to test his levels again until the morning.  The home nurse care people came by, and they taught us how to flush his pic lines.  A home care nurse will come to our house once a week to clean or do something to his line.  Sometimes this still seems like a dream.

We have had more guests today who have brought yummy treats.  It is always fun to see familiar faces.  I got to get out of the hospital for a little while.  I had a wonderful hour and half of escaping at Melissa's house.  My sweet friends Autumn, Julie, and Mandi came over and the five of us got to visit.  It was refreshing.  I also got to love on Bailey and Daisy for a few minutes before I headed back up to the hospital.

We have another praise!  We thought we might have some issues with insurance because of James starting his new job and preexisting conditions.  After many hours on the internet and phone calls we believe that we can still join a Cobra plan through HISD.  James Thomas will hopefully have coverage for this next year.  Thank you God for this light!

The plan for tomorrow is to draw another round of blood and test his levels.  They said as long as he doesn't spike a fever or something drastic happen with his levels we should go home!  He may need one last transfusion but it is looking good.  We will follow up at the Texas Children's Clinic on Friday.  We will visit the clinic twice a week for awhile but being home is perfectly safe for him!  I am anxious to get him to a pumpkin patch to take some fall pictures, but until then enjoy our little video of the pumpkin we have here!  This is a new road for the Garrett family but we are going down it and we will get to the end.  I am positive about that!   

Pictures from the day

Just a few pictures to capture the day.  Today was our day nurses last day to work for the week.  In fact she came in today and worked over time to be with us during James Thomas' procedure. Brandi has been our day nurse since Friday and like someone told us, "The nurses are just extensions of God's hands taking care of us."  That is exactly what Brandi did.  In fact when Melissa got here today she took her to us.  We were on a different floor and in a new area but she wanted us to have Melissa there.  The little things these nurses do make a HUGE difference.  Thank you Brandi!  We will never forget you.  

 James Thomas is asleep now and looks like an angel.  Each day James and I pick a new verse and write it and post it on the wall.  Today's verse was, "Anything is possible if a person believes."  Mark 9:28  I can't wait to see what God has planned for this little boy.  Like our blog says, "It an adventure and even being here at Texas Children's it's still a GREAT one and I wouldn't want to miss it!"

Good night!

Back in room 18

We are back in our room and James Thomas is doing great.  The procedure took about an hour and they said it went super smoothly.  We sat with him in the recovery area and when he woke up I was able to nurse him.  He was one hungry fellow.  The great new about the pic line is that they have taken out that big I.V. that looked like a cast in all the pictures.  His nurse is letting him stay off IV fluids for awhile so he is free!  We have danced around the room and turned lots of circles.  The freedom is fabulous.  

We are waiting to get test results back and they want to take more blood out of the pic line later.  James went to eat with his dad and we are trying to get James Thomas to take a little nap.  It is pretty calm now so I may try to rest too.  Thank you for the prayers.  We had an amazing peace when they took him, no tears - no sorrow!  James is a rock and I feel honored to be on this journey with him as his wife.  I love him so much.  

A little exciting news.  James' second cousin was a fabulous pediatric GI doctor in Washington DC. and has a colleague who works at Texas Children's.  This doctor came down while James Thomas was in surgery and said he is going to do anything to help us out.  He has a friend who is in hematology so he is going to get more information from him.  This is great news but the amazing part hasn't even come yet.  So, I told him about Luke.  He said his boss works on EB patients frequently and is the best in Houston.  He told me the Jones' family would not be able to get in with him and if they did it would take months.  He said that he would take Luke as his patient and then use this top doctor to do any procedures Luke may need in the future.  Isn't this wonderful!!!  He gave us his card and hopefully Melissa and Greg can get Luke in to see him.  God is good.  These things that keep happening can't be coincidence but God's hand protecting our two families.  

We will try to post some pictures later of James Thomas.  I have put him in PJs and he is being rocked by his Mimi.  Again, thank you for the love and support.  Each of you have eased our pain and cried out to God for our son.  Priceless! 

Off To Surgery

We are leaving for surgery in 30 minutes.  He did great with no food.  Please keep everyone in your prayers especially the doctors.  His levels were 8.8 this morning which is good.  I will update you as soon we know anything.  Thank you for all the early morning texts and calls.

Lots of love!  GOOD LUCK JAMES THOMAS!!!

Quick update

We have had a great day.  NO PROCEDURES, NO TRANSFUSIONS, NO NEEDLES, just monitoring James Thomas and some informational talks with the doctors about tomorrow and the days to follow.  We have had lots of visitors and that has been fun.  It is hard to use our phone all the time with doctors, nurses, and other guests walking in all the time so just to let you know we don't mind visitors at all.  I don't know what tomorrow morning is going to look like and I know the surgery is on the 3rd floor so it may be hard to locate us in the morning. We should be back on the 9th floor by afternoon.  

I just had a dear friend Jordan email me the cutest thing her mom said, "As mom said B + was a good blood to have because it reminds us to "be positive!"  I love that!  More to come later.  

  and James!  (don't know how to add him to the signature)

A few more pictures!