Home Again!

Zak got home on Friday morning after a very long week in the hospital. He came home on oxygen and needing to be monitored very closely. He was still very week and had a low grade fever. Friday night was still a little rough, however as the weekend progressed he gained more energy and his personality was back! We have such a wonderful team of nurses that help us with the kids while we are at home which made the transition home easier.  

Callie was so excited to see him. I only wish I knew her language. She went on and on like a typical girl telling him everything he needed to know. I can only imagine what things she had to say – “ Where were you I wanted to play” and “Don’t ever do that again!”

 Today was a good day with both kids. We were able to take Zak our for a short walk and get some fresh air. He will have a good amount of energy and then just crash and need to rest. The fever has finally broke which is a great sign!

Thank you again for all the prayers while we were in the hospital. Please continue to pray for his health as we are not completely healthy yet and that no one else ever gets this illness, it was just terrible experience.

Now that we hope this is behind us I can honestly say I have never been so scared in my life. When the kids go in for surgery I expect it to be a rough ride and we know they may come out intubated and it will take some time to get back to "healthy". Seeing Zak with more energy during the day than he had for the past week and then having a good doctors appointment that Monday afternoon was refreshing. I thought he was finally feeling better. To suddenly see him turn for the worst and end up intubated for 2 1/2 days was terrible. We still do not know exactly what happened that evening when he turned, nor do I think we ever will.

Thank you again to all of the support around us!

Every day is a better day

Zak is doing a little better today. He is more alert which means more sedation medication. His co2 has gone up slightly from 45 to 49. His fever has finally broke!!!! Lots of prayers are needed tonight for a good night. If he continues to do well they will consider removing the tube tomorrow.

The staff has been wonderful here. We have had some very good nurses, many that we remember and a few new ones along the way.

A sick house!

Last Monday evening Callie woke up with the puke flu and on Tuesday Zak followed. Within 2 days it turned into the nasty cold that is going around Central WI. Callie seems to be getting through it doing well. Zak was not doing well by Saturday and took two trips to the ER. The first one for dehydration, the second to get oxygen at home for pneumonia. On Monday morning Zak was perking up and looking much better. He was playing with Callie a little. He went into the clinic in the afternoon for a follow up and was doing well.  

At 5:30 on Monday night he was sleeping and started to choke – we knew something was not right and took him to the ER again. He was not responding when we got there – later to find out his C02 levels were way to high. They were 104. He did become responsive in the ER, but they had to intubate him for transported him to Marshfield to the PICU. They did leave him intubated over night and sedated him so he was comfortable. His CO2 has dropped to 45 (which is very good). He still had a fever of 103 and the pneumonia. They have been doing lots of blood work, swabs and other tests to see if they can find anything. This afternoon we were told he has Influenza A. Since he has been symptomatic for a week they cannot give him anything else. Meds would need to be administered within two days of onset. So for now they are slowing decreasing vent settings and see how he does. So far so good! The fever is starting to decrease. He is very comfortable and doing much better than 24 hours ago! Thank you for all the prayers - They are helping!

Zak did have a busy day today with the doctors and nurses checking in on him. He also had a PT session to work on stretching to make sure he is not falling behind any ( he was not- he did great). Also our Pastor came to visit, Jessica - one of our nurses, and Grandma Kathy. Zak has a HUGE monkey balloon. I can't wait for him to wake up more and play with it since we always call him a Monkey.

Since Callie is not 100% they suggested that she also gets swabbed so she was in today and will follow up with the doctor tomorrow.

We will update more when we can.

Zak is crawling around the house

We are so proud of Zak.. he has started to venture around the house! What a big boy!!!

The video is really done after 25 seconds.. not sure why it hangs for a bit.

It has been a busy Month - Callie's Surgery went well. Her throat is all healed up finally. During the surgery she got bacteria in her blood. She ended up in the hospital for 4 days. Finally she was able to come home but with a PIC line. (Basically an IV that goes close to her heart). Since we already have nurses at home we were all set to start the medications.

The weekend after surgery was Callie's 3rd Birthday. It is hard to believe our baby girl is three years old. Where does time go? I remember when she was so tiny. She is developing into such a beautiful big girl.

Then it was off to a weekend away. The nurses got Chris and I a night away so we were able to get away for a night and go to a dinner show. It was much needed after moving, Christmas, surgery and everything else going on.

Jenn and I started doing focus groups for Shared Blessings, Inc. Friday was the first event where Wausau's Lincoln Elementary Cognitive Disability class took a field trip! There is more to come. We are just about finished with all the legal and getting the Non-profit application in the mail.

Callies' Pic Line

 Callie's Party

Building a fort

Surgery - Tonsils

Callie went into the clinic 2 weeks ago for her ears. We knew it was only a matter of time before they would tell us they could remove her tonsils and adenoids. The surgery was scheduled for February 3rd.

Callie went in yesterday - they did remove her tonsils and adenoids. Everything went well, exactly as planned. They also scoped her nose since we did not think she really had much of an airway. It was confirmed that her airway is narrow to non existent. The doctors have taken note and are collaborating to decide what the next steps with be. Also they removed her right ear tube since it was causing some issue and was clogged. They cleaned up her left hear and kept the ear tube in place. She does have an infection in that ear so they are treating her with IV antibiotics while we are in the hospital.

We expected to stay 1-2 nights. Callie was doing very well yesterday after coming out of the surgery. Later in the evening the swelling started to set it. With her already having a narrow airway and having sleep apnea it made for a Long night! We tried several different BiPap settings, Pain meds, relaxation meds. She only slept good for about 1 hour. Today she is feeling much better and keeping her BiPap on. Depending on how the day goes and how all of her labs look we hope to be home tomorrow.

Please Keep Callie in your Prayers as she continues to heal!

Welcome 2012

It is hard to believe 2012 is here, I am not sure where 2011 went. We are very grateful for a mostly healthy year. 2011 started out very rough with Callie's horrible sleep apnea and aspirational pneumonia. Thankfully we had some amazing doctors trying to figure here out and by March she was doing better. August brought ear tubes which was not so great. Since the placement of tubes she has had a constant ear infection. We battle it daily. Recently we switched doctors and are taking a slightly different approach with medication  Zak also had a good year medically. There was some worry his neck surgery was not holding up the best, however 2012 brought wonderful news (just yesterday) that is looks great! He started 1st grade, in the same classroom as last year. Although he has missed a lot of school due to illnesses he loves it while he is there.

We had a wonderful Christmas with our families. The week prior was not so much fun though. Zak got a cold the weekend prior, right when we thought he was feeling better it started all over again. Callie brought the first bought of strep into our house. This was a bit scary since her tonsils are already big to begin with. Since they were both already sick that was not enough, next was the flu. They were so caring to even share with Chris, myself and about half of our nursing staff. I was shocked how quickly it spread.

We spend New Years at our house celebrating with out family and a few friends. We always welcome in the New York New Year. 11pm is much easier to celebrate than 12 :)

This month brings many doctors appointments. Zak had his MRI yesterday and saw Neuro. All reports were wonderful. He will pick up his new ankle foot orthotics this week as well. We follow with Callie's ear appointments,  both kids dentist appointments and Callie's transition into Preschool. It will be a busy month.

Since most people has been asking. We are finally settled into the house completely. We absolutely love it and could not ask for a better group of people to help our dream come true! It was wonderful to celebrate Thanksgiving, Christmas and New Years at our home. 2011 goes down as a year to never be forgotten.

We have started to make plans for the community room. We will be starting Focus groups the beginning of February. If you would like to help in any of the planning please contact me at cateeters@charter.net. We are hoping for a grand opening around April 1st! Stay tuned.