Excuse me if this is not quite as eloquent as prior posts-but I am dog tired. We just finished a family photo shoot and dinner before coming home to finish laundry and bathe the kids. I am so ready for bed. But tonight I lay my head down with a smile on my face knowing that my husband is sleeping next to me. Finally, Jeff is home again and our family is back together to face the road ahead together. We have the strength to deal with anything when we tackle it together. I love my husband and I am more appreciative now that ever for the sense of sanity that he brings to me with just his mere presence. And Kalyn is much happier too. She didn't really understand why Daddy wasn't coming home and she could sense that something big is going on. It would be hard not to notice that you are seeing a few new doctors each week and having multiple tests. She knows something is on the horizon. We are trying our best to prepare as well as we can. She has a limited ability to grasp the journey that is in store for her. We are working to break it down into small feats to aid her in understanding. She knows that she is going to stay in the hospital for a while and is all right with this. She also knows that she will be wearing a funny hat for a while and doesn't seem to be really thrilled with this. But with time and continued explanations she grows more and more accepting of all that we attempt to share with her.
She is now being taken off of her rheumatiod arthritis medicines one at a time in preparation for surgery. Yep, we are now close enough to begin preparing and in fact we have a date. June 2nd we will report to CHKD at 1030 am for the first surgery. During this surgery they will implant the halo and extract her primary teeth. Then she will go to the PICU for 6 days in traction. Only 2 days is needed to prepare her spine. However, 5-6 days are needed for the cysts in her gums to drain completely of the infection. She cannot have the surgery until this infection is resolved. June 8th she is scheduled for the posterior cervical fusion. Then, back to the PICU for around a week before we are released home. She will be in the halo when she comes home.
Dr. Birknes called me to discuss everything and schedule a final meeting as well as a meeting with anesthesia. During this call we discussed halo vs. collar. He told me that because of all of Kalyn's medical problems she is at an increased risk for instability of the fusion. He said, "Kristi, I would hate to look back in 3 months and say Man if we had just done this one extra measure would this look just a little better." He wants her to get the best results possible. I am of this same school of thought and agree with his reasoning. I have placed my complete trust in this person and he is aware of this. I think I scared him in our initial consultation when I took his hand in mine and looked him in the eyes and said, "I have researched you online, you went to the best schools and have some very impressive awards. But I need for you to know that I am putting my child's life in your hands and trusting you. Please take care of my baby." He was taken aback a little. He looked at me wide eyed and said, "Thank you, I will take care of her." I think that this made this a little more special to him by impressing upon him that this is more that just another patient. This child is special.
I have always known that Kalyn is special, as does anyone who has ever come in contact with her. I wanted him to know too. And by the end of our meeting she had him wrapped around her little finger too. Her eyes just smile right down into your soul and make you happy just to be around her. You know what I mean-you have all seen her too. And if it wasn't true would you be reading this?
So here we go...pray for us as we hold on tight and begin this whirlwind ride-we are going to need all of the help we can get!
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