biopsy and results

Last Tuesday we took KG to children's to have a liver biopsy. We arrived bright and early and got some good play time in (for 6am).

playing with the mask before procedure

At 7am they let us take her back to the procedure room and the anesthesiologist put her under anesthesia before we left. 20 minutes later, Dr. Palomo came to our room to let us know all went well. Keller was back in my arms by 7:35 after a brief stop in recovery. She was very fussy at first, but slowly got back to her smiley self. She didn't nap for one second the entire 5 hours we stayed at children's. Needless to say, she took a great nap that afternoon and was completely normal that evening. Nothing can slow her down!

This afternoon, Dr. Palomo called us with the results from the biopsy. They ruled out autoimmune hepatitis (Praise God). In fact, they believe that her inflamed liver is simply due to alpha-1. They have prescribed a medicine called ursodial. While she does have some mild fibrosis (which can lead to cirrhosis of the liver) they say that it can be reversed given how the liver fights and regenerates. We are thankful that her liver has handled being alpha-1 antitrypsin deficient so far and pray that the damage and inflammation stops. 

Dr. Palomo will continue to see her every 4-6 months but he did say we are "far far far far away from needing a transplant consult."  We hope and pray that this is something that will never happen yet trust God's hand and direction. 

We again thank you for your prayers and support over the past year. Given that this condition is chronic we still have a journey ahead of us. **welcome to parenting :)

Love you all!

snuggling after procedure

"resting" with daddy

we loved our nurse, linda!  she took great care of KG!

going on a walk around the C.A.R.E.S unit with aunt kinsey

headed home!

heavy heart

on tuesday we took keller up to children's hospital for her checkup.  we always get a little anxious before we go, and this day was no different.  we did the normal routine...went and had her blood drawn (horrible experience every time...but luckily she recovers quickly)...and then headed up to our appointment with our GI docs.

dr. reyes came in and updated us that her liver enzymes had increased.  in fact, they were higher than they have ever been.  she consulted with dr. palomo (our attending GI doc) and between the two of them they recommended that we have a liver biopsy.  they want to take a closer look at the liver tissue to see what is happening.

so, now we wait.  on tuesday we will make a trip up to omaha again to have the procedure.  while the biopsy itself is pretty quick, it will take a few hours of observation afterward to make sure all is okay.  it's never easy watching your children go through things like this...and our hearts are weary.  i know we are surrounded by the best medical team and they will take great care of our sweet baby.  it will take a couple weeks to get the results.

it has been almost one year since we were admitted to children's hospital.  and for that entire year, we have known she has alpha-1 antitrypsin deficiency.  we knew the day would come that they would request a biopsy given this is a chronic disorder.  but, i was shocked to hear that her numbers had increased.  our sweet keller grace is happy.  she bounces all over the place.  she's loud, charismatic, smiley, curious, and appears to be extremely healthy.  you would never know that her liver is aggravated.

we covet your prayers.  please pray that erik and i can get rest.  that our families can get rest.  that evie can be protected from the emotional roller coaster.  please pray for dr. palomo and our team of doctors as they try to come up with more answers.  but ultimately, i beg you to pray the Lord wraps his arms around keller grace and protect her body and liver from any additional disease or damage.

we are humbled.  every time we walk through the doors of children's hospital, we watch parents with children who go through daily struggles that we cannot even imagine.  we are blessed.  we know that the Lord loves our children and will care for them.  but that doesn't change the fact that we feel weary and distraught as we wait.

Lord Jesus, please stick with us.  i beg you.