Monday, April 13, 2009

Update

Well, it doesn't look like we'll be coming home for at least another week at least. We spent 3 1/2 hours in pre-op this morning only to be told that Keegan's liver biopsy will need to be pushed to Friday. The pre-op nurses forgot to remind me when they called last Friday to hold Keegan's daily aspirin dose over the weekend. Aspirin is a blood thinner, which can increase the likelihood of post-op bleeding. Additionally, liver biopsies have an inherently high risk of bleeding, so the two are not a good combination. I don't know where my head is lately because I'm usually the one that reminds the doctors to hold his aspirin.

The other problem is that Keegan's most important labs from today, his liver function and immunosuppressant levels, didn't get drawn. Again, I don't know why I didn't ask today because I always do. I guess I was a litle stressed, in that we waited forever with an antsy 19-month-old with a ton of other germy kids around. Keegan has also now finally reached the point that he will get upset when they call his name, especially for bloodwork. And he is very strong, so with a screaming boy and seeing the two big syringes to fill, I assumed (there's my mistake) all the labs were being properly drawn. Of course, we didn't learn of these problems (aspirin and labs) until we were back at the apartment.

I'm waiting on a call back from the doctor this evening to clarify some of these things. The scheduling people called this afternoon and said there's some availability on Wednesday, so we'll be pressuring the doctors to allow the procedure then. If we do wait until Friday, Keegan will likely need two more sets of labs this week, not to mention blood draws after the fact. The other kicker to a Friday procedure is that we likely won't get any results, yet alone electron microscope results, until next week. We have already been here six weeks. I'm sure you don't need me to tell you that we're none too happy about today's events. Although, this is the first time we've really been disappointed with the care here, and it was, fortunately, not the direct fault of our primary doctors.

We will update again if the plan changes or if we get more information. Gray will be here on Wednesday. We are thankful that he will be here for this procedure and thankful for Mamie's help since she's been here. Please keep both Gray and my mom in your prayers on Wednesday for safe travels on their flights. We posted some pictures and videos of Keegan's Easter weekend. We love to read your comments there and on our guestbook here. Also, just a reminder that April is National Organ Donation Awareness Month. Learn more info on organ donation HERE. Of course, you can always email us with any questions you have, but please, please consider your preferences regarding organ and tissue donation. Let your family know your wishes...you can save lives with this one decision. Keegan is the best proof of that!

And now to go a little off subject, but I hope you will bear with me. It has been heavy on my heart this week, and perhaps something you need to hear also. This Easter was particularly difficult for me and not just because we were not at home with our family. As a Christian, I want to rejoice in the resurrection of our Savior, Jesus Christ. I want to celebrate his overcoming of death and sin and pain. I want to exult in the promise of everlasting life with the Lord. As a human, I want to despair in the medical trials my only son has to bear, every single day of his short life. I want to grieve over the loss of normalcy in his life. I want to blame God for not healing Keegan and making his burdens disappear. It would be so easy to think that believing in HIM means that we no longer have to suffer. On the contrary, it is because of our belief, because of our love for Him, that we choose to pick up and go on every day through this journey. Because every day we choose to pick up our crosses and walk with Him, knowing that He is truly the one carrying them for us...because He loves us enough to endure the nails of His Cross for us. Please pray with us for the courage and strength to continue to walk this journey together and focus on His love, not our own trials, every day.

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