Now that we have had 24hrs to process yesterday’s appointment here is what we know.
- Her nj tube is getting pulled tomorrow
- Her next admission for dehydration will be at chop. No more fluids in the emergency department then home
- She’s in the 10th percentile for weight.
- We have to do weight checks and hydration checks often with the pediatrician
- She is suffering from ptsd
- We are working with her team to help with the medical trauma
- She is to stay on the meds for her central nervous system issue.
Randy and I are not 100% on board with this decision but we are going to put faith in her care team.
We all were very emotional yesterday. To watch you child have fear over the next step is hard. To watch her cry and tell the doctor that she doesn’t think she can do it. To know that this decision may be a set back but realize you have to do it anyway. We just felt like we were blindsided yesterday.
We all have been affected by all these surgeries. She’s had so many. To have to hold your child down 12 times In less than two years while she is put asleep is hard. To watch her getting put asleep — her eyes roll back and you instantly flash back to her seizures. You want to scream for someone to help but you realize it’s not a seizure. This is just how it goes. To have to decide which parent hides the tears while putting on a brave face to walk her to the operating room. To watch her bp and o2 numbers while she’s waking up in pacu because sometimes she needs extra oxygen. To know that she takes extra long to wake up. To know which pain meds work best for her and which she can’t use due to her clinical trial meds. To keep telling her the team is trying to help yet another procedure is needed is hard. All of this has caused us all stress, anxiety, fear… but it’s always reminded us of our love, hope and strength. Yesterday we needed time. We needed time to process the doctors thoughts. To figure out where we each stood on it. To figure out our plan as a family going forward.
Beaming with hope 