Here is Tonya's latest update for Katie. Please think about your children as you read this. Keep this in mind the next time your little one is doing something their not supposed to, or you " just need a break"...what if this was your child? I have kept Torie close to me since she was born, but things like this make me want to never let her out of my sight! Tonya's update has made me cry and even be sick. I cannot imagine being in her shoes. This is truly something no parent should ever deal with! Here's the update:
Met with Dr. Mahle and his coordinator. Dr. Shri Desponde sat in also. He was very thorough in telling us about the transplant. Pretty much anything we would have asked, he told us before we could ask. I pretty much held it together for the most part of the meeting. I don't think I blinked much for fear of those tears behind my eyes escaping. I did shed some tears when he said we would more than likely outlive her. We know that is a very big possibility, but no parent wants to hear those words coming from someone's mouth. He said it gently, but still, I couldn't hold back on that one. He thinks right now we aren't in an immediate situation. We have a little time to process, discuss, and make some decisions. Shane wants to wait until closer to summer and I understand that with work and all, but I am fearful that the longer we wait, the sicker she could become, and the more difficult the recovery. He talked of her antibodies being high which he said is expected from anyone that has had multiple surgeries due to the exposure of blood products, shunts, etc. I am just terrified. I don't know the right thing to do and I am so worried I will make the wrong decision. God please help us make the right one.
Part 2
Dr. Maher came in later today and said that the plan for Katie is to take her slowly off milirinone, so that she doesn't have to go home on that since the Viagra is basically the same thing just in oral form instead of IV. She will go home on the octreotide which means she goes home with the PICC line and IV pump (although I think it may be smaller in a backpack or something). He wants to TRY to let her stay at home for a couple of months. He wants us to come down once a month or so for an evaluation to make sure she is still doing ok. He feels that it will be safe to have her home and try to wait until closer to summer for transplant. I guess ballet will be out for her since she will be wearing that pump thing. Shane knew that he had kids, so he asked him if it was one of his, is this what he would do and he said yes. He wants her to have as normal a life as possible right now. He is looking at trying to get us home Sunday or Monday. I just pray she stays healthy and strong. We will have a home health nurse coming to our house every day for a month or so. Insurance has approved everything which eases our mind some on that aspect. Whenever we get the page that a heart is available they want us to go by ambulance or air. The woman asked how we are doing and I just wanted to say, "How do you think we are doing?" Of course she had to ask if we need to talk to someone and I just want to say, "When are we supposed to do that?" between Katie's appt., work, homelife, etc. I guess this is my outlet in some ways. I can't talk about my feelings very much without becoming too emotional and losing it. Much easier to type it. They want everyone that will be near her to have both flu shot and H1N1 shot. Shane and I will get both here we think tomorrow if they let us. The dr. said the pharmacist said most are saved for parents of bone marrow patients, but she was going to see what she could do. It's been a rough day once again for me, but Katie continues to laugh and smile. God bless her soul. We did take her downstairs last night when it was snowing and let her feel the snow landing on her (briefly as it is frigid!!). We filled a cup with snow and Katie came upstairs and started throwing snowballs at Nurse Jennifer and Natalia! Oh those huge belly laughs sure can ease the tension. We also came back to the room and made a little mini snowman. The snow is still on the ground here a little. Connor went with Charlisa, Bill, and their kids to their home to play for a while. I'm sure that's good for him. I hope he behaves! Katie is taking a nap while she is getting frequent vitals due to them dropping the milirinone in half today. I think it will be stopped tomorrow. Please continue to pray for us. All the doctors really feel that transplant is where we will be. We knew her heart was very unlikely to last a long time, but we just wasn't expecting it to be so soon. It being this soon also means that it is highly likely she will need another transplant when she is a teenager. I know doctors don't know everything, and miracles happen everyday (her just being here is a miracle), but it seems as of now this is what is meant to happen. I feel by God putting us here at this time with several families waiting on transplants or have had transplants, meeting friends on Facebook and here that have been down this path, He is trying to prepare me for this event in sweet Katie's life. We've made it this far and even though it's hard to see how we will get through this, He always does get us through. I never in my life thought I would be able to care for a medically fragile child, but there is nothing in this world I wouldn't do to help her or my Con Man!
No comments:
Post a Comment