Transplantiversary!

It is really hard to even wrap my mind around where we were this time last year. Ryman was Day 1 Post Transplant! We met Katie for the first time on this day last year also. She has been such an amazing support through all of this. Her daughter also has CPS1 and was transplanted at Georgetown at almost the same age as Ryman was. She is my go to for crazy transplant questions and even random, ‘so did L go through a stage where she poked at her belly button and pushed on her scar lots’, questions. Today my worries were if Ryman needed to poop and are her teeth getting stained from the iron supplements… man we have come a long way in a year. I watched Ryman sing and dance today and thought of how amazing our God is that she is with us. When I think of this I will be honest, it’s hard to think of the children who left this world and gave Ryman the chance to live. It’s hard not to ask, why? Yesterday and today are such emotionally exhausting days. They are days of joy. Yesterday was the anniversary of the ‘call’ and today was the anniversary of when she actually got the new liver. They are days full of thankfulness and happiness that the first year is behind us and Ryman is still here with us. They are days of feeling heavy hearted for the family who are having the first anniversary of their child’s death and the thought that we will repeat these emotions on Sept 18 when it’s the anniversary of Ryman’s second transplant. It is so strange to be pulled in such opposite directions of emotion. Happiness and sorrow. I hope that the families can find even an ounce of happiness in the thought that their child’s life ended with more meaning than most of us will leave this earth with. If you aren’t an organ donor please consider it. Each day, an average of 79 people receive organ transplants. However, an average of 18 people die each day waiting for transplants that can’t take place because of the shortage of donated organs. People of every age give and receive organ donations. In 2013, 28,953 people received organ transplants. Below is the number of recipients by age group followed by the number who received organs from deceased and living donors:
o 1 Year Old: 260 (241 deceased, 19 living donors)
o 1 – 5 Years: 545 (437 deceased, 108 living donors)
o 6 – 10 Years: 292 (228 deceased, 64 living donors)
o 11 – 17 Years: 721 (591 deceased, 130 living donors)
o 18 – 34 Years: 3,081 (1,983 deceased, 1,098 living donors)
o 35 – 49 Years: 6,310 (4,699 deceased, 1.611 living donors)
o 50 – 64 Years: 12,674 (10,516 deceased, 2,158 living donors)
o 65+ Years: 5,070 (4,271 deceased, 799 living donors)

I currently know many families whose children are waiting on transplants Even a little boy whose mom is on the hunt for a living kidney donor since he will wait forever on the list with the possibility of never getting one in time. If you have any questions feel free to ask, there are many misconceptions about organ donation. It’s an amazing and beautiful thing these two children have done for our Ryman. I want her to never forget the lives that she carries with her daily.

So much love, B

Brandy Little, PG, CFM, GISP
GIS Analyst
AMEC Environment & Infrastructure
Nashville, TN
Office: (615) 333-0630 ext. 7072
Cell : (615) 974-7077
http://www.amec.com
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Alkaline Phosphate

That dang Alkaline Phosphate is finally coming down. Monday was down to 2800 from >4555, yesterday was 2100. Slowly but surely. AST and ALT were up a bit on Monday but are coming down again. I think even our doctors had a sigh of relief when the Alkaline Phosphate came down Monday. They were in the process of referring us to the hematology team to make sure we weren’t dealing with something more than a virus and infection.
We have 6 more days of IV antibiotics so my prayers are that her levels are normal enough by then to go to at least weekly labs since the picc has to go. However I did notice tonight after flushing her line the catheter site looks a little red. So I emailed a picture and will hear from them tomorrow on whether I need to take her in to have it checked. Better to be super cautious. She doesn’t have a fever so I’m thinking it may be okay. It’s been a long couple weeks and the exhaustion has taken a toll on me. I typed most of this last night but fell asleep before I hit publish :),
Prayers for continued healing and for no new line infections.

Ryman is going to a new nanny. She has another play mate there named Riley. Ryman is teaching her new trick.

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Home again!

Sorry for the late update. We gt to come come on Sunday! We had some amazing nurses this stay and made some new friends who loved on Ryman so well. I will be administering IV antibiotics at home for the next 10 days. Total Nurse Brandy. Ryman’s numbers were a little crazy yesterday but the Alk phos was down to 2500 so I’m hoping the others will level back out when that is back to normal.

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Another night.

We thought we were going home today but they wanted one more negative culture. So praying for tomorrow. Ryman was a little bi-polar today. Either extremely happy and trying to make us laugh or super fussy and signing finished to everything we offered. She mainly wanted two things, food and the iPad. Oh boy. She is definitely getting some of those steroid cheeks back. Our little nugget again. Patti is here helping so I get to sleep in my bed with two awesome pugs tonight. Jeremy is in Baltimore and got to hang with Julie and Corey tonight, miss those two like crazy.
Prayers for Matthew and Braden who are both at Georgetown prepping fit transplant. One will get the transplant and one will not. Prayers for the chaos and emotions of what the night may bring. Goodnight to all.

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Klebsiella pneumoniae

We found out today that it isn’t a picc line infection. It’s actually a bacteria that is found in your gut called Klebsiella pneumoniae and if you are immune suppressed and you have lots of diarrhea it can get into your bloodstream and cause a blood infection. So not great but we now know that it isn’t the line. The good news is the antibiotic used to treat it is the one she has already been on for two days. The culture from yesterday hasn’t had any growth yet. So if it still has no growth tomorrow morning then we may get to go home tomorrow on IV antibiotics!

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Our downtown apartment.

We finally got a room at around 1pm today. Ryman’s ultrasound came back normal. No blockages. They took blood cultures from the line to see if anything grows. They will not pull the line unless something major comes back. We are still unsure if the vomiting and fever are related to the Norovirus or if Ryman has picked up another virus. Her temp went up to 104.1 this morning but has stayed lower after the second dose of Tylenol. Not sure how long they will want to watch her. Thank you everyone for the continued prayers that Ryman can kick this stuff.
So much love, B.

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Hospital.

We are currently admitted to Vanderbilt. Around 9pm Ryman started vomiting and had a fever. It ended up spiking and went to 103.4. With her having the picc line we have to go straight to the ER since you risk having a line blood infection. They started IV fluids and antibiotics. We just finished the ultrasound too. Her labs are a little wacky. We are thinking this is still just the Norovirus since her immunosuppression level was so high today. We will update as we know more. Prayers please.