Heart Surgery Date

We got the call last week that the cardiologists and surgeons had met and discussed Katie’s situation. Our doctor actually pushed Katie up the discussion list, to get her evaluated before Christmas. They all agreed with our doctor that Katie is a perfect candidate, because she is doing so well, to do the surgery early and try to prevent the need for another surgery later in life.

Katie’s surgery is scheduled for Thursday, Jan 16 in Rochester. The surgeon wants to do the surgery in Rochester, rather than Syracuse, because the anesthesiologist in Rochester is more experienced and confident with small babies.

The surgery should take four hours with the surgeon only needing one hour. The first hour is preparation and the last two hours will be waiting for her to wake up from the anesthesia. She could be in the hospital from 5 days to 3 weeks depending upon how well she recovers. The average is usually 10-14 days. The main recovery hurdles are coming off the oxygen, removing the chest tube that will help drain extra fluid, and then getting back to eating well and removing the IV.

It is essential that Katie does not get sick for the next two months. If she gets sick before the surgery they will postpone it. If she gets sick after the surgery she could have trouble recovering or even need to go back to the hospital. We have been working very hard with Ellee to teach her about germs but she is still having trouble keeping her hands clean and off of Katie. We have decided to go into a semi-isolation.

Ellee is out of preschool for the next two weeks for Christmas. We are going to make it an extended break and keep her home from school, church and other public places until the surgery and maybe after too. If she does leave the house we are going to be very careful about hand washing, not touching, etc. We are planning a quiet winter in the house with crafts, books, movies, puzzles, games, and playing outside.

So Mike and I are scientists and needed to know what was going to happen to Katie. Here are the details…stop reading if you don’t want to know! Katie’s surgery is full open heart surgery. Her chest will be cut open, her ribs opened, they will stop her heart, and keep her alive on a heart-lung bypass machine. They will close the hole between her ventricles with a patch of Gortex and open up her pulmonary artery to allow the blood to flow normally. If this early attempt is successful, the pulmonary valve will function normally and will keep blood from leaking through the artery. If the pulmonary valve is leaky, they will need to do another surgery when she is a teenager.

Synagis

There is a special vaccine (Synagis) that Katie qualifies for due to her heart condition. This vaccine is to prevent her from getting an RSV infection. RSV infections are like sever colds that can turn into bronchitis or pneumonia in young children. Children with heart problems have a very hard time recovering from RSV and often have to be hospitalized. In addition, if she gets RSV her heart surgery would have to be postponed indefinitely because it could cause severe complications with the surgery.

Katie got her first Synagis shot before she left the hospital, then she has to get one a month, throughout the cold season, to keep her immunity up.

It was a ridiculous fight trying to get her second shot which was due on Dec 9th. Our pediatrician ordered the vaccine through our insurance, Aetna. Aetna authorized the vaccine but for some reason approved it under my name and birth date rather than Katie’s. The doctor believed the shot would be shipped on schedule and arrive any day because they had done all they needed to on their end.

On Dec 9th, I called Aetna and they had no clue what I was talking about, and said it had never been ordered. I decided to drive to Katie’s doctor’s office and sit in the waiting room until I could get someone to help me. I got the attention of the nurse coordinator who also called and got the same run around. This initiated an eleven day phone war to get the vaccine.

Aetna kept claiming different reasons for why the vaccine hadn’t shipped. First, they needed the prescription again. Then they couldn’t find the prescription. Then we had to get it reauthorized under Katie’s name. Then they claimed we have pharmacy insurance and that company needed to handle the vaccine. Then they claimed they needed the prescription, again, etc.

Every time I would call, I would be transferred to many different people, and then told the doctor needed to call. Then I would call the doctor, they would call Aetna and get a completely different story. In the end, the doctor’s office yelled, demanded to speak to a supervisor, and then called the supervisor every hour until the prescription was sent.

We finally got the vaccine on Dec 20, 11 days late.

According to the doctor it should ship automatically from now on, but they are going to start calling a week before the next one is due. Katie and I are now celebrities at the doctor’s office because all the nurses and staff heard about the ridiculous process. When we went in to receive the vaccine everyone wanted to meet Katie, and of course, thought she was awesome. I survived my first insurance battle…joy!

First Day of School

Katie started school one day before her one month birthday. Due to her Down syndrome diagnosis, Katie qualifies for the Early Intervention program involving physical therapy, speech therapy, and occupational therapy as needed. Katie will be in Early Intervention until the age of three when she will transition into special education provided through the school district.

To get her started, she first had an evaluation by a school psychologist and a physical therapist. They, along with her Service Coordinator, came to our house to observe Katie and test her developmental level. They asked me many questions about how she communicates (different cries), how she is eating, if she recognizes her family, if she turns towards noises, etc. They also played with her watching her arm and leg movement, her eye tracking, her general strength, her hand grip, her movements on her back and belly, etc.

She tested at the normal level for social-emotional development, cognitive development, adaptive development, and communication development. She does have a delay in her physical development mostly due to her hand grip. Most babies make fists most of the time and hold very tightly when something is placed in their hand. Katie has a weak grasp. Her homework for the next month is tummy and side time and hand grasping practice.

In January the Physical Therapist will start visiting twice a month to help teach me how to help Katie, what skills to watch for and encourage or discourage to help her improve most effectively.

Cardiology visit

Katie is doing wonderfully at her one month cardiology visit.  She has gained 14oz in 14days, which is amazing, especially since she is exclusively breastfed.  Her heart is looking great, functioning well, and her oxygen level is normal (which is amazing for her heart condition). 
 
So the hard part is...she is doing so well that they want to do the surgery soon.  She is an excellent candidate, since she is thriving, to try to save the pulmonary valve.  To do that, they need to do the surgery in Jan/Feb time.  She is so strong and healthy they think she will bounce back after surgery with no trouble, even with doing it at the young age.  And if they save the pulmonary valve then she will probably not need another surgery later in life. 
 
So, the next steps.  The doctor is going to put her on the list to be discussed with the other cardiologists and the surgeon either this week or next.  If they all agree with the doctor that we saw, then I will get a call a few days later to set a surgery date.  There is a possibility that the doctors will not agree, and this whole plan will change.  However, if it does go according to plan, we should know when her surgery is in the next few weeks. 
 
With the weather so crazy in Dallas right now, my mom is going to stay until we hear when the surgery is.  We will evaluate then if it makes sense for her to go home and then come back, or just hang out here. 
 
We really appreciate all the support and prayers.  This is going to be tough, but we fully know that God has a plan for Katie and that the doctors know what to do.  This is a real lesson for me in learning what I cannot control and following God.

Fun times at home

Ellee is a wonderful big sister.  She is helpful and loving.  She needs a little help learning how to interact with Katie, but she is learning.  

Here are some cute pictures from the last month.

Ellee thinks Katie looks like a pickle!  :)

 

Gobble

First bath!  Katie loved it.

Thanksgiving Family

 

 Thanksgiving girls.  3 Generations.

Coming home

Katie got to come home at about 2pm on Monday November 11^th, which was day 4.  We woke up that morning not sure if she would be released.  Mike and I got ready and spent most of the morning waiting.   The NICU doctor wanted one last round of tests before he would agree to release her.   They wanted to check her glucose, potassium, and biliruben levels.  She passed those tests at about 10am and we were told to return for the 1pm feeding.  Once we completed the feeding the nurse went through the paperwork and we were free! 

We drove straight home so Ellee and Katie could meet for the first time.   

Here are some pictures of the fun.
  

Let's Go!

At home

The meeting

  

 Happy big sister

 

 The set up.  Katie is yawning not crying. :)

 Sisters holding hands

 

First family photo!  We look sooo sleepy!