February 2, 2011

Ladies and Gentlemen...Grayson Brown has left the building!!!!
Discharged February 1, 2011 at 5pm after 51 days in the hospital!
Praising, Praising, Praising!

Grayson signing his discharge papers

(we had a nice view of the JH Dome and city during our stay)

Mommy is so happy and so proud!

We are settling in our little one bedroom apartment in Canton. It is a very sweet and cozy space and is specially designed for post transplant patients. It is only two blocks from Canton Square which has some really great places to eat which is a plus. The kids and Tom can come and stay whenever they want for as long as they want. The only restrictions for visitation is that everyone is perfectly healthy and hasn't recently been around someone who had any signs of sickness (cough, runny nose, sneezing, etc.)

We will be back and forth for our outpatient clinic appointments and light therapy on Mondays, Wednesdays and Fridays. Originally Grayson was supposed to be sent home on TPN (IV nutrition) but he surprised everyone (especially me) when he took up breastfeeding again after 5 weeks of not eating. I thought he was done for sure being that he was 12 months and hadn't eaten anything for 5 weeks. I had been praying that he would start again after transplant ~ not because I enjoy nursing a 27 pound toddler with teeth, but because I knew the antibodies in the milk would help protect his body from infections. His immune system is not just fragile from the transplant but they are also giving him two different immune suppressing drugs to treat his GVHD. The doctors all told me in the beginning not to get my hopes up but that it would be a wonderful thing if he did go back to breastfeeding after transplant. Most of the younger doctors had never seen a breastfed baby go through transplant and that is because most kids that go through transplant are older than Grayson or too sick to breastfeed before transplant. Anyway, I decided I would at least try to keep my milk supply in during the time he wasn't eating. I pumped so much in the beginning that I felt part bovine. I am glad I did though because not only is it helping Grayson's immune system but it also meant we no longer had to be on IV nutrition! Yay! We only have to run a bag of fluids through the night and do 6 NG tube feeds throughout the day. Oh and for those that think its gross or weird to breastfeed your baby when they are a year old...it's not! The American Academy of Pediatrics recommends all babies breastfeed for the first year and longer if possible.

My new full time job as nurse is going okay. I haven't messed up yet but the entire day is spent measuring and giving meds, tube feeds, breastfeeding, journaling ins and outs, offering as much table food as possible, and changing lots of diapers due to the diuretic he is on. Oh and we sleep too which is so much more peaceful and comfortable now that we are out of the hospital. Some meds are once a day, some twice and the others every 6 hours, except for Bactrim which is given twice a day on Saturdays and Sundays only. I have a spreadsheet for the med schedule and a journal where I write down everything that goes in and out. I feel confident that I can do this, but I can't imagine leaving him for even an hour to go anywhere until he is off at least half of these meds. Tom could probably do it if he had some practice but one of us has to work so he doesn't have much time for that. Did I mention how wonderful my husband was? He works so hard and spends the rest of his time running back and forth between our house and the baby and me. I wish I could get it on camera when he walks in the door here. The babies face just lights up with a huge smile and he squeals Da-Da! I am sure my face has a similar expression. He is our hero!

For as much as Grayson is going through he is doing so well. He is eating lots of table food which I hope means we can cut back on the tube feeds and lose the NG tube soon. He is tolerating most of his medications. Now that they are all by mouth he is having a harder time with them because some taste bad and the sheer volume of medications is hard on his stomach. I am thankful he hasn't thrown any back up though. The true test will be this weekend when he has to take the Bactrim. Please pray he keeps it down because it is so important to get that down and keep it down.

Grayson's whopping 14 medications!

There have been so many people that God has sent to us in our time of need. Everyone of you reading this and praying for us are included. I wanted to give a special thanks to Kate and Jason Ring and their girls Caroline and Hailey for all of the wonderful things they have done for us during this time. We love you all!

Caroline and Hailey: Grayson loves his new special lamp with the cars on it and he sends hugs and kisses to you both!

I also want to thank the people from Department of Agriculture who used to work with my mother-in-law for their amazing gift. You have now idea how touched Tom and I were to receive your letter and gift. We don't know any of you but we thank God for your generosity towards our family.

So many things to be thankful for:

My wonderful husband
Breastfeeding

No TPN

Grayson eating so well and tolerating NG tube feeds
Taking meds so well by mouth
A cozy clean apartment
Ben and Jerry's Dulce Delish ice cream (I really missed ice cream while I was at the hospital)
Living next to nacho mama's and other great places to eat

Please Pray for:
Safe travel to and from clinic and light therapy appointments on Mondays, Wednesdays, and Fridays
For Grayson to eat enough table food to stop NG tube feeds
Be able to take and keep down the Bactrim on Saturdays and Sundays twice a day.