I called the GI team at LPCH last Thursday to schedule Owen's liver appointment and was told the soonest they could get him in was July 25th. Cardio said it was too far off and they would take care of things to move his appointment to an earlier date. It is now Tuesday and we still don't have an appointment and I am growing more frustrated each day. I called cardio yesterday morning and they said they "sent an email to GI requesting an earlier date". Then she called at 5pm yesterday and said we should hear from GI in the next week to schedule Owen's appointment.
I am just so overwhelmed and exhausted with the calling back and forth. In order for Carson to get off work to travel this trip, we need to leave the first two weeks of July. If it's later than that, then I will need to fly with the kids and I need to start reserving airline tickets and portable oxygen .. like yesterday! If it's during the first two weeks of July, then we will drive and I need to start making hotel arrangments because CA hotels mid summer are not inexpensive.
I decided to be proactive and call the GI department again, myself, instead of just waiting for a phone call. I was on hold while the rep went back and forth and finally came back on the line to say.. "Katie is our NP and she is working with Cardio on scheduling. She is off today but hopefully you'll hear from her in the next couple days." Big Sigh.
So we wait.
I am trying so hard to destress, I really am. I just want to plan this trip and get my questions about transplant answered. Remember our last trip on May 29th when they answered absolutely nothing because they needed more testing. Major fail on their part. The tests are all complete and now I need specific answers.
When are they going to list him?
Can we wait in Arizona while he is stable? Did they get insurance clearance for this?
Are we going to proceed with IVIG treatments? If so, how frequent? Also.. where can those treatments be done? When do we start them?
How frequently does he need to be seen by the heart failure team while he is listed if he is waiting in Arizona? Bi weekly? Monthly?
These are serious questions that impact our lives greatly and I feel like we are just hanging. I don't want to drag things out anymore.
We continue to wait.
5 comments:
Can you leave Kamryn with your mom or sis and take an angel flight with Owen? It will be free and you can return same day if you want.
We can't do angel flights with oxygen. :(
Hey Andrea. My mothers heart hurts for you as I read your post tonight. I know what its like having unanswered questions. The whole "does my child really have cancer or not" is a hard one to live with. I will pray tonight that 1. Owen will accept his transplant when the time is right and 2. you will get the answers you need very soon. I hate it when people say this to me, but I have to admit that I have found it to be true. "In God's time." And I promise all those details will be laid into a perfect plan. When you look back on it you will think to yourself "I couldn't have planned it any more perfectly."
I can really sympathise Andrea. I don't do well with waiting/not knowing either. It makes everything so much harder when you are just hanging around waiting for info. Hoping and praying that you don't have to wait much longer before all your questions are answered. xx
Your family is never far from my thoughts Andrea. You are such an amazing mom with such a great attitude. I can't imagine how frustrating all this waiting must be when you just want answers. Keeping you all in our thoughts and prayers!!
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