Saturday, March 14, 2015

An Update On KatieJoy-

"Strength and dignity are her clothing and she laughs without fear of the future." Proverbs 31:25

I have always "given" a verse to each one of our children while I was pregnant and KatieJoy was no exception. While "paper pregnant" the above verse seemed appropriate and now that we have had her home for the last 3 months it is even more fitting.

I have said this verse over and over again as well as a myriad of others since Wednesday. Our cardiologist from Cooks called us personally to discuss the meeting he and his team had regarding the results of KatieJoy's heart cath. I knew it wasn't going to be good when he asked that my hubby be there for the next appointment so we could discuss our options. Basically, in a nutshell, the team of doctors (including the surgeon) agreed that as of now she will not be able to have the 3rd surgery. They do not believe, at this time, that she would survive it, they fear she would either not live through the actual surgery or that her body would reject the new flow of blood shortly after surgery. There is still a lot up for discussion with the team of doctors and so far this is one of the decisions they made.

So whats the next step?

The team has decided to do a less risky surgery in April or May going through her back under the left shoulder blade to access the heart. Depending on how well she does with this one they will decide what to do next. I think there will be some discussion of heart and lung transplant for the future (this is definitely the most risky of all the surgeries).

They are hoping this next surgery will buy her some time and possibly strengthen her heart/lungs.

So why the sudden change in plans?

Well what they saw on the cath is that left side of her lungs do not look so good. Blood is not flowing properly and there is a great deal of concern with her left side. They believe it needs to be taken care of quickly and that how she does with this surgery will be very telling.

We were told to enjoy her, take some time as a family, and let her enjoy life.

We know that God has a perfect plan for her and He is still a miracle worker and that HE can do great and mighty things!

Some may think this is easy because she isn't our biological child, but I am here to tell you that its not. We love her as if I gave birth to her and we will continue to pray for a miracle and for God to sustain her. We are trying to plan a little trip with her to Galveston (so we can be close to Texas Children's just in case) and we are also being encouraged to apply for Make -a -Wish for her.

Does this mean we have given up and resigned to the fact that she may not make it through the upcoming surgeries?

No, we know and are well aware of how fragile her life is, as well as how fragile all our lives are, but we also believe that she can live for another 30 years if that is in Gods plan...but we want her to live her life to the should be true for each one us.

How can you pray?

-for the team of doctors as they make decisions
-for our appointment on the 30th .
- pray for strength for KJ
- pray that she will come through this upcoming procedure

We appreciate all your prayers and we know these prayers have helped get her through so much!