Crunch Time

We had our pre-op appointment yesterday(Thursday). Talk about stressful... nothing like sitting with a neurosurgeon and discussing the risks of a surgery at the most intricate portion of the spinal cord and stem of the brain. Needless to say that discussion has left me with some nervous feelings. Although I trust that everything will work out for the best, these are still scary things to have to hear. We are now 4 days away from the initial surgery. We can expect that surgery to last for 2-3 hours and the second surgery will be around 5-7 hours.

They will be taking bone from her hip to use with the fusion in her neck. We can expect minimal pain from the first surgery. However, the second surgery (on the 8th) comes with more pain. Luckily, they will not have to cut through any muscle. But, they will be cutting between them and holding the two muscles in retractors for many hours. This will cause more of a spasm like pain. To deal with this pain, Kalyn will be on IV Valium for relaxation of the muscles. They are hoping to find a dose that will achieve this goal without sedating her too much.

We also toured the PICU at our appointment. This caused more anxiety than the risk discussion. We are not allowed to sleep with her in the PICU but can visit at anytime as long as we aren't sleeping. This is horrible because hospitals always make me sleepy and I can't imagine leaving her alone. There are bunk beds in the lobby sleep rooms but my Uncle lives about a mile away and has offered his spare room. No visitors after 8 pm except for parents and Alexis has to have scheduled visits of about an hour at a time.

I think that we will probably stay in Norfolk on the weekends as a family and switch off of who is at the hospital to allow both children to get their mom and dad time in. Keep us in your prayers and know that we appreciate it. We love all of you.

Surgery is scheduled

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!

Minor Setbacks

Wow...little did I know that after I finished that last post I would be on my way to the ER with Kalyn. The GI bug kicked her tail. Poor baby would not rehydrate no matter how much saline they pumped in her. She was transferred from Mary Immaculate to CHKD for hydration. Thank you so much to my friends and co-workers at MIH for taking care of my baby girl. Especially to Dr. Hutchison...I'll bet you thought I never cried until that day. (Even tough girls have soft spots- mine is my kids) We were lucky that she did improve greatly overnight and was able to go home on Friday. So grateful to God for getting my baby girl through that.

Totally stunk that I had to catch her virus and spend all day Saturday in bed with Alexis taking care of all of us. That child has abilities that you would not believe. We spent mother's day recuperating together and went to UVA to meet with Dr. Shaffrey on Monday.

He was a very intelligent and kind man. He basically told us that Dr. Birknes is very capable of handling this surgery and that CHKD is the best place for Kalyn to have surgery because of all of the pediatric specialists that are available at that facility. (She already sees quite a few and they are very familiar with her) He also said that should any problems arise at CHKD then he would be happy to have her transferred to UVA so that he could care for her. He also suggested that she might not need the halo after surgery. As long as her bones fused well during the procedure she may be able to just wear a collar. He wanted to make us aware that this procedure will cause her to lose about 50% of the mobility in her neck. We look at this as glass half full news considering that we were expecting complete loss of mobility following surgery.

All in all it was a very positive meeting and we left with even more confidence in Dr. Birknes. This was enough to make the 6 hours worth of driving worth it. Dr. Birknes' office is attempting to schedule surgery now. We are looking to the first week of June around the 2nd but do not have a definite date yet. They are having to coordinate the schedules of 5 different MDs for the surgery. So this is a bit of a task. Bur we have faith.

Keep us in your thoughts and prayers while we continue on our journey. Thank you for all of your continued support that love.

Progress Begins

Met with the new dentist on Monday May 3rd who says that his part of the surgery is simple and will take about 10 minutes. Maybe that should be 9 minutes now-seeing as Kalyn lost one of the 10 teeth he was supposed to remove late last night. I innocently asked the girls how much they thought the tooth fairy gave for silver teeth. Alexis said "I think it's 100 dollars." I don't think so...it feels so good to laugh with the kids in spite of all that is going on. Anytime I am overwhelmed by what is going on, I just take 10-15 minutes to talk with the kids and they will make me happy and put everything into perspective. Kids have the right perspective...I wonder at what point in life we lose that?

I had to pick Kalyn up from school today because she was sick. She puked in the car on the way home...fun times. After a dose of Zofran for nausea and some Tylenol/Codeine elixir for the pain with the new molar coming in she is sleeping soundly on the couch. She is so pitiful when she is sick. She was very pale when we got home...Kalyn tends to get dehydrated very easily when she vomits. But her color looks a little better now that she is resting. I pray that she wakes up she is feeling much better.

Tomorrow we are scheduled for allergy testing at CHKD-let me clarify that- 4 hours worth of allergy testing at CHKD. They are trying to rule out a suspected Penicillin allergy so that when she has surgery she will be able to have a wider array of antibiotics to prevent any infection from setting in. Then Monday we are off to UVA to meet with Dr. Shaffrey for our second opinion consultation.

I had Kalyn's hair cut into a pixie on Tuesday to cut down on the shock of having it shaved for surgery and the halo. It will also make it easier to keep clean while she is in the halo after surgery. But this also made everything feel more real. Like "this is really happening". At this point I think we are ready to just get it done and start taking care of her and helping her get healed. Dr. Birknes is eager to get surgery done also and is attempting to schedule surgery as I type this post. We are looking at the first week in June for our first procedure. Tentatively June 2nd to implant the halo and complete dental surgery. That is 27 days away. Wow...just saying it makes it feel so much more real.

One concern that has arisen is that she will have to come off of her rheumatoid arthritis medicines for 2-3 weeks prior to surgery and 3-6 months after surgery. Kalyn has never fared well without the medicines and has a lot of pain when she her arthritis is flaring. Hopefully, her doctors will be able to find a way to keep the arthritis at bay without compromising wound and bone healing. I put my trust in them and pray that they can rise to the occasion. I don't really have any other choice. But all of you know me and you know how I am. I will be paying attention...and I don't have a problem letting anyone know how I feel or what I feel they need to do (especially when my kids are involved). So here we go... I know that time will start to fly now that we are looking at a date...guess we just have to hold on tight and pray as hard as we can. I know we will make it through.