To Trach

Hi all,

So today Ella went in for a heart cath. This is a procedure where Dr. Hill (the cardiologist) put a catheter in an artery through her left thigh and he measured the pressures in her veins and heart. He wanted to do this to make sure that we weren't missing anything that would explain why Ella hasn't been able to get extubated.

Dr. Hill came to see us after the procedure and informed us (and the PICU doctor and Dr. Watanabe) that the clots in Ella's neck are worse than we thought. They are not allowing blood to get through so her body is opening up other vessels to compensate which allows blood to go from her heart to her head. To the best of our knowledge, these clots seem to be the main issue for Ella's inability to get extubated. They are not allowing the swelling to go down in her face which may be obstructing her airways. Before the procedure, Dr. Hill was leaning towards extubating Ella one more time, but after seeing her clots he was leaning more towards getting her a tracheotomy.

So after talking with the PICU doctor, Dr. Hill, and Dr. Watanabe, we have decided to have Ella get a trach. Honestly, I was pretty devastated. I couldn't believe that this is what we needed to do for Ella. I tried to hold back tears while talking with the doctors. Matt and I left the hospital a little while after making our decision. I just wanted to get out of that hospital room. We got in the car and I immediately broke down crying. I thought to myself, could this really be our life now? As if parenting wasn't hard enough, we've been given an even harder situation than many. Matt started driving and neither one of us knew where we were going. Finally we got close to the state capital building and decided to go to the rose garden. It was like God knew we needed to be around the beauty He has created to allow us to process this new information. After walking around and smelling the roses, I felt God's comfort and peace about our decision.

We got back to the hospital and talked with our nurse, one of our social workers, and our Child Life social worker.  Each had a different perspective and information about tracheotomies, each being really positive and helpful. I saw a picture of a child with a tracheotomy and it wasn't at all what I pictured. It was a lot less scary looking. We learned that, most likely, Ella's trach won't be permanent. She will have it for any time between a few months to a couple years. Of course, I'm pulling for a few months 😀. We will have to have an at-home nurse that will help us care for Ella and her new "accessory". We aren't sure exactly what that will look like but will learn soon. The care for Ella has gotten a bit more complicated now, but we will be up for the challenge. Please pray for us to absorb as much information about how to best care for her while we are at the hospital. Ella will most likely not need to be sedated any more once her surgery is over and she will be able to start the healing process. We will start to focus on getting her strong and healthy so that we can get her home. We should also be able to get to snuggle and hold our baby girl (finally!) in a week or so. It's so weird having Ella for over a month now and not having held her for more than 2 minutes or not at all (for Matt). Something that I guess I took for granted with Eli. It's funny how you start to realize how special the little things are...

Now here's another problem that the clots have created... If those clots don't disappear on their own soon, Ella will not be able to get the second surgery, the Glenn, as we planned. This is the second open heart surgery of the three that she will need, but they need these arteries to be clear in order for them to perform this surgery. The period between the first and second surgeries is risky for HLHS babies. They are really fragile and their bodies cannot handle what normal babies' bodies can. So what I'm not sure of is if we are unable to do this second surgery, does this risky time period get extended? Dr. Watanabe and Dr. Hill talked about alternatives to the Glenn and we aren't totally clear on what it would look like, but we are just praying that God will remove those clots from her little body. The fact that they are so unusual is really annoying to me. It's just one more thing that Ella's body has to deal with. It angers me and concerns me, but I have found such comfort in knowing that God loves her more than we ever could and He is the ultimate healer.

Ella's surgery for the tracheotomy will take place tomorrow sometime around 1 in the afternoon and should last around 45 minutes or so. Please pray that she will be more comfortable once she gets off the breathing tube and that her body starts to heal. Please also pray for the hands of the surgeon.

Thank you for praying that God would give us wisdom. We asked him for clarity and it was pretty apparent what we needed to do. Even though it wasn't what I wanted to do, I am so thankful that God made it so clear to us what Ella needs.

Love,
Matt and Jillian