This could be a long one hold on!

I usually go back and read the last post and was surprised it was nearly 2 months ago, That’s like a third of Betty’s life. What has happened in the last 50 days…

Let’s start with Betty, she is doing great! She continues to progress and shows no signs of rejection of her now little heart. #Bettysbigheart She will be 5 months old on May 5th and just passed her 3 months post surgery. She is maybe a week away from being weaned off narcotics, we are so excited to be done with them it is so hard to watch her suffer through this after all she has been through. She now does not get meds from 10pm to 6 am the next day. We really like this. Mom still has to pump and of course there are diapers changes but we don’t have to administer medications with a headlamp all while half asleep. Betty loves to go on walks  outside with the dogs, bath time(until you take her out), and  likes to keep on the move and does not tolerate delays. Speaking of Betty I’ve gotta go, she is very smart and has figured out when I wake up she can also get up. I’ll be back to finish up…

Well I’m back with Betty in my lap, see pictures. (this is mom’s sleep time). We are learning a routine and schedule that works for all of us. Throughout this journey countless Dr’s, nurses, psychologist, counselors and others have told us it’s a marathon. The only problem to me it felt like a sprint and I was usually breathing too hard to hear them. I now know we are in a marathon and like most marathons we are beginning to set a pace. The hard part being we started off sprinting. By the way I have never ran a marathon, just makes a good analogie. So we have a pace but like most marathons they are not done alone and we could not have done this without help from others. 

Our support network is what gets us through. My mom(Lisa or Oma) has been with us since March 15th and I could not be more thankful. She is changing Betty’s diaper while I type this. She is so great with Betty and can get a smile from Betty no matter Betty’s mood. She helps with all the many chores we came home to. We have not fed chickens, dogs or cats since we have been home and they are all still alive and well(she must be feeding them). She is always folding laundry, Betty likes to watch. Andrya and her are both amazing cooks and are constantly cooking something, I’m starting to show.

In the past 2 months many new obstacles have come up, I will try to name a few. Betty got a GI study done to make sure her intestines formed properly and they have. That’s good it rules out one reason she has loose poops.(I could talk about poop all day, but I will spare you). While doing that the tube was placed too far and Betty was not a happy camper. Cascade Medical came to the rescue, they treated us like royalty kept Betty safe and got the situation fixed and Betty immediately felt better. Our new GI Dr Pcikens at Seattle children’s has also been a great support and gone above and beyond to ensure Betty is well cared for and on a path to a normal life. We hope to pull the feeding tube back to her stomach after the narcotic wean is over.  Betty’s newest obstacle is a very itchy rash (atopic dermatitis) on her face and head. Our PCP Dr. Breslin and Dr Eisert have helped us work through it. It bothers Betty and does not help us keep her tube taped down(we are getting better at this task and is part of our pace). Betty is so tolerant and continues to amaze us. Betty still has a clot in her right leg and we continue shots, but last ultrasound revealed it is improving. Our Cardiac team continues to diligently work with us and helps us to learn the many obstacles we will encounter, like last night we realized we will run out of one of her rejection meds, the pharmacy graciously is refiling and having it overnighted to us. We will continue to make monthly visits to Seattle usually overnighter so we do not need to cram a bunch of appointments into one day. 

I will finish up with a huge thank you to all that have supported us and continue to support.  COTA funds have truly got us through this sprint, we have not needed to stress about finances. Betty gets stronger everyday and we are happy to arrange safe visits with her. (Lester’s cell 509-860-3727) call or text. This is the best way to get a hold of me and I will do my best to get back to you. People ask all the time what we need help with and we do need help. We are usually too busy to ask. If you still want to help with this “marathon” COTA has a recurring payment option, any amount will help with a lifetime of transplant-related expenses (only do what you can afford). I feel like we are past the sprint and looking forward, I anticipate we will struggle to find safe care for Betty(Oma leaves May 6th, she’ll be back she is gonna miss Betty) this means Andrya and I will be sole caretakers. We will do our best to manage time and money and get Andrya back to work( I am already back to work). The reality is with my random work schedule and Betty’s specific needs we will likely be a single income household. The money donated to COTA for Betty will assist with a lifetime of transplant-related expenses. We will continue to our best and keep all of you informed and part of Betty’s life.

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