When Monday came around our nerves were getting the best of us knowing that his procedure was today. Alissa, Tracy's mom and sister both made it up to see Kimball before his procedure. It was great to see Alissa and her reaction to our families new addition. She loved it and we could tell that she loves Kimball. She was so excited to touch his head and hands.
We left to go get lunch so we could make it back before the doctors came back to take Kimball. After lunch we went into Kimball's room and noticed that he was still there, so we waited and waited. Around 2 o'clock the doctors came in and informed us that they were not going to do the procedure today because of some possible genetic complications. Man did this just hit us like a ton of bricks. We were told that with some genetic outcomes that surgery would not be beneficial and that there would be nothing that they could do. The room was now closing in on us......we had prepared ourselves for the heart defect so well and knew what was going to happen.......but this new news was a curve ball that nailed us square between the eyes. Monday ended with our spirits depleted of an energy. We visited Kimball late tonight and even though the emotions were overflowing we had a calm peacefulness as we held him.
Tuesday July, 22nd
With more strength, we tackled today with more visits and we were able to get Kimball into his MRI that was needed before the doctors could complete the catheter. Kimball looked so good today that again we were just amazed that he has any complications at all. We took every opportunity to hold and visit with him. Because of the genetic questions at hand we were asked to give blood to uncover any linking of the genetic issues to one of us. We were informed that there was a translocation of chromosomes and this could mean an unbalanced or deleted chromosome structure. This leads down a very unknown path of possible outcomes. We would get more information on this issue Wednesday the 23rd. Kimball's MRI came back good with good brain structure and no issues of any abnormalities. We were also informed that he was scheduled for his catheter on Wednesday!!! This was good news to end the day. Today was a much better day and a day we needed after the news we received on Monday.
Wednesday July, 23rd
Well today started on a good note. We woke up ready to meet with the Geneticist at 9:30, to find our pager beeping at 8:30. When we called they had informed us that Kimball's catheter procedure had been moved up and he was being taken back at any moment. So we rushed down to see him off. He looked so great and peaceful.
We waited in the lobby for the Geneticist to meet with us while Kimball was in with the doctors. We were nervous about the findings and were hoping for the best. When the Geneticist arrived we met in a conference room and there she explained to us that Kimball had a rare genetic disorder called Wolf-Hirschhorn syndrome. This is caused when chromosome (4p) to be exact, is deleted or is not present. This disorder has many symptoms such as heart defects, malformed ears and kidney malformations all of which are seen in Kimball, with many more significant symptoms that we would not like to discuss now. We don't know much and it feels like we can't even think about this syndrome yet because we need to focus on the heart for now. Because we thought we were so prepared for the heart defect, this curve ball has placed us back to square one, not knowing where to turn or go. Right now we are just confused, but need to focus on Kimball and the surgeries at hand. Please again pray for Kimball and for once please pray for us. We need it at this time.
6 comments:
You both are such amazing people. We are very sorry to hear the news of a genetic issue...our hearts go out to you both. We have been praying for strength, comfort and guidance for your family during this time. Thank you for the darling piggy bank (Tracy...you're so talented!), beautiful card and picture of your sweet family. Even with this news, you all look very happy and that you're handling it well. Sorry to have missed seeing you yesterday...when you stopped by the ICU desk, I was sleeping in Maddie's room. I actually just stopped by the front desk and had them call Kimball's room but missed you as well. We'd love to take you to dinner or for icecream or something. Please know we're here for you and can't imagine what you're feeling, we just would like to take away your fears and uncertainty. We'll call you soon. BTW- your family is so beautiful and Alissa looks like such a proud big sis!
Love,
Bryan and Katie
Kimball is so precious! He looks so peaceful. We're praying for all of you! We miss you... Give Kimball a kiss from us!
We love you
Kim, Donnie, and the kids
If there is anything we can do, let us know. We will keep your family in our thoughts.
Eric, Tracy, Alissa and Kimball,
What a beautiful baby Kimball is!!!
Our thoughts and prayers are with you!!
Laurie and Samantha
Our hearts go out to you both. Many you draw strength from each others love, and know your friends are here if you need anything!!! I can't imagine what it must feel like to have so many unanswered questions....but we are here for you. Thank you for sharing your son, he is a blessing.! Loving all that dark hair...wonder if it will stay or turn light like big sisters. :)
Terrilynn, Paul and family
Wow I'm sure you guys are just feeling really overwhelmed and aren't sure what to do from this point. Just take one day at a time and try not to think to far ahead focus on what can be done now. We will keep praying for you guys just be strong! We just hope for things to go well and that you and your family can be home soon! Michael and I have been reading everyday so please keep us updated and if there is anything we can do for you guys please don't hesitate to call! Love, Kyleigh and Michael Sanchez
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