Angel Wings

Addison lost her fight with CDH today. At noon, she was disconnected from ECMO and put into my arms where she peacefully went to heaven. Before she passed, Jason and I got to hold her and tell her how much we love her.

We want to thank all the doctors (escpecially Dr. Keller and Dr. Roberts) and nurses (Christa, Anna, Sue , Stephanie) at UCSF for giving her every chance.

We are making arrangements to have Addison brought back home, so we can have a service for her. We will update once the arrangements are made.

Thank you for all your kind words and prayers.

Still on ECMO

Addison ended up retaining more fluid over the weekend, so the doctor's suggested that we give her a few more days on ECMO to get the fluid off so she would be strong enough to be weaned off ECMO. Please pray that the tricks that the doctors are trying will work for her.

Thanks

We have been receiving so many cards and words of encouragement from all of our friends, family and even complete strangers. I want everyone of you to know how much it means to Jason and I.

It seems that the cards and packages are always timed when we need them the most. I guess that is God at work. Yesterday, we received a package from our Sunday School class full of cards and gifts for Addison. It was like receiving a big hug from all of them as well as a little piece of home.

Still on ECMO

We were told that because her decannulation procedure may be more difficult due to the placement they will be moving her to the OR for the procedure as a precaution which will require her to be hand bagged during the transport. With this in mind, Dr. K did the trial off ECMO with only hand bagging and the traditional vent support.

Addsion did pretty well on Thursday with the practice wean. They completely clamped off the circuit and her stats dipped but she recovered to oxygen levels in the low 90's to mid 80's on the Traditional Vent (Oxygen in the 60s), but her heart rate and blood pressure were not as stable. Dr. K told us to give her another day and they would tray again. Yesterday, her oxygen levels were not as good (in the mid to low 80's) at the same support but her blood pressure and heart rate were perfect.

Dr. K told us that she has a lot of fluid on her due to the ECMO and they were going to try to get the fluid off over the weekend by upping her dose of Lasic and would try again on Monday. They upped the dose and Addison began peeing like crazy and maintained the rate throughout the day, so we are hoping the chest X-ray will show less fluid build up today!

Update

They are going to try a trial run off of ECMO today. Depending on how she does, they will remove the cannulas tomorrow or over the weekend. We are keeping our fingers crossed that she does well. Please keep her in your prayers today.

Update

Addison is holding steady on ECMO. The plan right now is begin to wean her off EMCO tomorrow and see how she does. If all goes well, they are going to schedule the repair surgery for Friday. Addison is actually opening her eyes some. She has the most beautiful blue eyes I have ever seen.

Yesterday, Liz and Kristi came to see us. It was nice to see them both. They brought Addison some adorable gifts. She absolutely loved them and cannot wait to wear them all. We are so lucky to have such a great support from our CDH friends.

ECMO

Addison has had a rough few days. After holding steady for what they call the "Honeymoon Period" her stats dropped and they were not able to stabilize her on the oscillating vent. They tried giving her Flolan to treat the pulmonary hypertension and it worked for about a day and then her stats were back down. On February 27, 2009 at 8:30 pm, she went on ECMO (Heart and Lung Machine) to give her little body a rest. They told us that she will be on ECMO for 5 - 7 days best case scenario and no more than 14 at worst case scenario. They are planning on doing the surgery to repair the hernia once she is off ECMO and stable.

Jason and I also had her baptized on the February 27, 2009 prior to her having the surgery to go on ECMO. She is being a trooper and hanging in there. Right now, we are just praying that the rest will give her time to build up strength to fight when she comes off ECMO.

One thing that is a positive is that they have reduced her paralytic so she can move a little bit. She is able to grip your finger when you hold her hand and talk to her. I am so proud of how hard she is fighting. She has taught me in the last 11 days what true strength and faith is all about.