2/9 Update on Kylie

“We received the results of the biopsy!

They found NO rejection! 

I’m in tears typing this! Everyone was convinced it was rejection but God is good! 

Kylie does still have a high number of antibodies attacking her lungs and they did find one specific antibody that can be extremely dangerous. However, they were able to catch it early before it lead to rejection. They are going to continue high dose IVIG treatments to try to prevent Kylie from going into rejection.

Her transplant team was very pleased with the results. 

Since Kylie is cleared from a rejection point, she was discharged from the hospital and can stay with us while we are in Houston. Yay! 

Now, we still have some problems and unanswered questions…

Kylie is still continuing to vomit excessively. It’s so scary. Yesterday she had 19 episodes and it’s a lot and they last about 5-10 minutes. It’s never feeds, only mucus. The team suggested that it’s reflux and to keep her sitting upright and see if that helps. So we are doing that over the weekend to see if it helps then meeting with the team Monday. So far it has not helped. We have kept her upright all day except for her one nap time and bedtime.

When you all comment advice or suggestions I always screenshot them and ask the transplant team about it. I might not always get a chance to respond but the suggestions mean so much to me and I really appreciate your help.

Some of you said that acid reflux can lead to rejection. I asked them and they said that is true.

So we need to figure out why Kylie is throwing up so much for many reasons. We don’t want it to be acid reflux and push her into rejection or for her to aspirate on it.

I desperately want answers so I can help bring Kylie some relief. It breaks my heart to constantly see her gagging and crying because it scares her. 

I do have good news about lodging! Ronald McDonald called and they were able to squeeze us in early! I literally cried I was so happy. It gets expensive paying for hotels (even using discounts; Houston is expensive). We checked in last night 

A lot of people have asked for an address to send cards to Kylie so I have added one below. (The new address was also updated on the Amazon wishlist.)

Thank you all so much for all your help, support and love. These three weeks have been so scary and difficult. I’m so relieved to be finally getting some answers but we still have unanswered questions.

Please pray that we can find a solution to the vomit episodes. 

I am so exhausted from staying up all night watching Kylie sleep. I’m terrified she will throw up and choke on it.”