Addyson saw her psychologist today. We talked through all the craziness of the past week. We talked medical options and mental health. I must say I love her psychologist. We talked about Addysons upcoming admission.

This next inpatient stay is going to be different for Addyson – It is going to be out of state – without family and friends visiting.  Her next inpatient stay is going to be at chop.  We don’t know the nurses there like we do at Hopkins. We don’t know our way around. We don’t know the activity schedule, and it’s shared rooms. There are just a lot of unknowns and it will be just Addyson and I for this upcoming stay.

Some have asked how they can help.  I’m not 100% sure.  Items to keep Addyson comfortable and food/gas/parking items are the biggest expenses during our stays. We have to take all of our own ostomy supplies because she is allergic to many of the wafers.  I am not sure what kind CHOP has, so we have to take extras because we may not be able to use the hospital ones, depending on their brand. 

She looks forward to her visitors so this is going to be a struggle.  I also have never handed her over to the team without Randall. We always hand her over together.  While I fully believe all will be fine we are always together to wait out the hours.  I know this is going to be just as hard on him as it is for me. He will be hours away from her. This is also a new team we are handing her over too. The last 10 procedures were all with the same surgeon. Same team. This is new and scary for us.

Please send positive vibes. We have weighed these options so much over the last few weeks.  None of these decisions are easy.  We really weigh the pros/cons, her mental health, her physical health, her quality of life. Our anxiety has been through the rough weighing pros/cons/looking up other options. Talking to other ostomy/NJ tube families. Talking to the entire team. ETC etc. We aren’t making any of these decision lightly and we really struggle with each decision. Randy knows. I sent a ton of emails to her doctors, talked the options through so many times, we bounced ideas/questions off each other.  
Nothing seems to be an easy win lately. Let’s hope that this decision shows her that she can feel better!

We leave to drive to CHOP on the 23rd of June and we are hoping to be home by the 28th. FINGERS CROSSED

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