Happy Halloween - Part 2

Today ended up to be a good day! It definitely started out a bit rough. Since Callie got on new medication she has been doing so much better! She fell asleep around noon and really has been sleeping most of the day. When Callie was so fussy she started pulling her bandage off. We attempted to keep it on, but it really was kind of a lost cause. The neurosurgeon came to check on her and said we could get rid of the bandage and drain!! So Callie was no longer a Q-tip. The child life specialists brought her a costume! She was Tinkerbell. What a lucky girl, two costumes in one day!

 

It was fun today watching all of the costumes. Gillette had trick or treating at the clinic/hospital today. All of the staff (other than hospital nurses) were dressed up. Kids were able to trick or treat through the areas. When Callie's Neurosurgeon came in he was dressed up as a contractor. He said I heard there was a broken pipe. Started to measure the bed. It was quite funny!

 

The plan for tomorrow will be to ween off this medication and start her on meds that she could go home on. The swelling is starting to come down now which is great. Her hemoglobin tonight after he blood transfusion today was at 8.5. They will check it again in the morning to see what it does.

 

Our excitement for the evening was going to Ronald McDonald house for dinner. Miss Minnesota was there and provided dinner with a local family. She signed a picture for Callie. It was fun to meet her and see her talk with the families and play with the kids. She is very deserving of her title!

 

Daddy looking over Callie on Tuesday.

 

 

Callie sleeping on mommy today.

 

After the bandage came off!She got a bath,

new clothes and right back to sleep.

Happy Healing!

 

Her second costume.. Tinker! 

We called to talk to Zak today! He did not have much to say to us, but he sure listened well. He had his follow up with GI today and they were happy with how everything was moving along. He will need a weight check in 3 months though. He has pretty much hung out at 40lbs for a good year (actually almost 2).

Happy Halloween



Callie says "Happy Halloween!" I am trick or treating today as a Q-tip!

 

She was finally sleeping this morning for a little bit.

Doesn't she look like such a BIG girl too?

I am not sure what happened but I feel like she grew overnight!

 

The night started off fairly well, however she ended up having a rough night. Just very restless. We all know not much she wants to move, but she cannot as she is hooked up to so many things. Also, she really is not tolerating her CPAP mask for her sleep apnea so that does wake her from time to time and not to mention we all know how many times nurses are required to check on their patients and it is even more often in the ICU so that does not help. She did sleep well from 2:30-4:30. She is finally sleeping again.

 

We recently met with the ICU doctor. They have been monitoring her hemoglobin very closely. Ideally it should be around 11-13. She did have a blood transfusion during the surgery as the blood loss for the skull surgery is significant. Yesterday she was around 9 so they were on the fence what to do. It slowly has been decreasing, and it is currently at 7 so today they are going to do another transfusion. They said if she did not have a heart condition the would probably just continue to monitor her, however with her heart condition it is safest to transfuse her. They will do that this morning. Also she had a fever this morning or 101.4, which is slowly coming down right now. The doctor also decided to change her medication plan since she seems to soak up everything they give her. Due to the blood transfusion and the medication she will be spending the day and possibly the night in the ICU. We are still waiting for the surgeons to make their rounds and will find out if they plan to remove her drain and bandage today. I know Callie is hoping that they will as she is constantly trying to get it all off.

 

As for Zak he seems to be doing well at home with the Nurses and Family. On Monday night he slept almost 12 hours (going to bed at 6pm). I was sure to tell Callie that Zak went to sleep early as she was not there to keep him up. We definitely miss our little man. Both of us have never been away from him at the same time so it is hard on all of us. Thankfully it has been uneventful for him. Last week he kept us busy. He had an ear infection which is pretty common around our house. It was not clearing for the ENT gave us an antibiotic instead of the ear drops. He ended out having a allergic reaction and broke out in hives. This was not the first time that he had the medication either. He ended up getting his ear cultured and turned out is was MRSA again so they put him on different drops. It sounds like the new drops are helping.

 

If you have time we would love for you to sign the guest book or always feel free to leave comments. We like to hear from you.

Callie Day 2 Update

Callie has had a fairly good day. This morning they pulled her breathing tube which she did very well with. They also removed her catheter and Art line. She was definitely happy to see a few things removed. However she did get oxygen added since coming off the breathing tube. She was still a bit tired this morning and a little more swollen then she was yesterday. Slightly after noon she opened her eyes despite the swelling. We even saw a small smile from her today. This afternoon she became her feisty self - mom's can say that right :)  We are not really sure if she was in pain, uncomfortable with all the tubes or just unhappy to be at the hospital. Probably a bit of each. She kept grabbing tubes and removing her Oxygen. She started to pull out her drain a bit too. Hopefully she will not manage to pull it before the doctors are ready. The doctors decided to alternate her with morphine and valium every two hours. She seems to be doing well with that. She even took an hour and a half nap on Mama. It was so nice to snuggle with my baby who typically wont snuggle more than 5 min.

 

We did meet with both of the doctors physician assistants today. They both feel like Callie is right on track and where they would expect her to be. Assuming she continues to progress well we hope to be home Friday (Saturday at the latest).

 

We had lots of company and activity today as well. Chris's Parents were here this morning as they came with us yesterday and left today to be with Zak and the nurses. His Aunt, Uncle and Grandma came this afternoon. One of my close friends Summer came late this morning. It has been years since we have been able to get together so it made for a wonderful visit just to catch up and help pass the time. Tonight my Mom, Brother and sister-in-law are coming up. Callie did very well with all the company and hearing familiar voices.

 

Tonight we got a room at the Ronald McDonald house which is actually right in the hospital across the hall for the PICU. We are very grateful to have such a wonderful facility so close. Anytime you go through McDonald's be sure to leave your change. Every penny helps such an amazing cause!

 

A few pics..

 

Callie on Sunday after we cut her hair before surgery.

This was not as hard as I thought it would be.

Callie last night with her breathing tube

 

Callie tonight taking a nap!! Quiet time to Blog :)

This afternoon before she got mad and started

pulling on her drain (The red tube)

Surgery Update

I am finally sitting down to post an update on Callie's surgery today. Sorry to all of the people I told I will text when I post (I did not want to text you at 10:45pm).

We arrived at Gillette around 9:30 and were taken straight back to pre-opp. Surgery was scheduled to start at 11:15. They did take her back pretty close to scheduled time. It took them about an hour and a half to get her all set up. She had an IV, Central line (similar to a PIC line - a catheter placed into a large vein in the neck), arterial line (thin catheter inserted into an artery for blood pressures) and  spinal monitoring. The spinal monitoring is what took the longest as they put a bunch of small pin like monitors all over her body. This allows them to monitor her spinal cord functionality while operating on her spinal cord. Once they call all the line and monitors set up she was ready to go.

The first surgery was a Foramen magnum decompression which is a next surgery to allow her spinal cord to have more room. After about a half hour the doctor was already out to talk to us about her neck. He said she did Great. He removed a small piece of bone from her skull at the bottom to allow her spinal cord room. He said was about 1millimeter by 1 millimeter in size. He also said that her spinal cord was about 50% compressed which was very similar to Zak's. The difference in the two kids was that Zak's neck was unstable and needed to be fused to create stability where Callie's was still stable. He will continue to follow Callie as she grows to watch how her vertebrae grow and develop in case she every would need additional surgeries.

The second surgery was a bit more tricky. She had Posterior Cranial Vault Remodeling for Craniosynostosis (Skull was not growing so there was no room for the brain to keep growing) They made a cut from ear to ear over the top of her head. They had to remove the back section of her skull and move it outward to allow for room for her brain to grow. She had severe imprints from her brain into the skull. The inside of the skull should be nice and smooth, which hers was not. The doctor even mentioned this was one of the most sever cases he has seen with the imprints on her skull. The surgery did go well which we are very grateful for.

The doctors decided to leave Callie intubated (breathing tube still in place) for the night as she has sleep apnea and thought it would be best to let the machine breath for her for a while. When we first saw her she was not to swollen, however several hours latter she sure is swelling up with is very common and part of the healing process. They are talking about pulling the tube in the morning and seeing how she is doing.

The staff is absolutely amazing here. They do such a great job to explain everything to us. They area all so helpful and caring. We truly are in great hands!

We appreciate all of the prayers though the day and days leading up to surgery. We continue to ask for prayers as Callie recovers through the week. She will be in the ICU for 2 nights and then on the neuro floor for 3-4 nights.

Mom and Dad are holding up good. Just glad to be through day 1 as it is a long day. Since she was stable and in the ICU in great hands we decided to go out for dinner as the rest of the nights I am sure we will be by her bed side.

I will continue to post updates daily as we are in the hospital. Hopefully sooner in the day than today :)

Something Special

Today Callie is having her surgery. As we sit and wait for the long procedure a close friend gave us a package to open! And this is what we found! What a wonderful Surprise and so special. She had this done before Callie had her hair cut and surgery. As you can tell Callie was loving up the camera, what a little model! Zak was not as happy, but he did get a few good ones. We had no idea she was even working on this. It has definitely helped to pass the time today.

Photograhy by Victoria! Thank you for the amazing photos!

Shared Blessings Open House

Through the help of the Build from the Heart project, Shared Blessing was created to ensure lasting support of the community room to continue outreach for children and families of special needs children. Shared Blessings has been very busy in the short time of its existence, through the open house we continue to reach out to those in the community that can benefit the greatest.

We are very excited to be able to open the doors to Shared Blessings, Inc. Stop by and see the space, how to support or become involved with Shared Blessings!