We have woken up to day 19 in the hospital. Yesterday afternoon the doctor came by for rounds and informed us that they wanted to do surgery on Eli on Thursday. The nurse says it will be sometime between Thursday and Monday, the doc said Thursday. HMMMM. Nobody talked to us about this. Apparently they want to do a spinal tap and a muscle biopsy. We started asking questions. He's like I don't know you need to talk to the surgeon and the neurologist, haven't they been in. Umm no. Nobody comes in and talks to us. We've been waiting for the surgeon to come in for days now about Eli's tube and stoma. So we are left with tons of questions and no answers. Come 6:30 we hadn't seen anyone. The nurse calls the surgeon. The surgeon says it's to cold and the roads so she isn't coming. She also says we don't need to change the tube size even though everyone had already agreed that we did need to change it. Mind you the night before the surgeon didn't come in or return her calls because apparently she was to busy. No word from the neurologist at all. So another freaking day we make ZERO progress and are left in complete limbo. I can't believe the insurance company is willing to pay for all of these days where the hospital is just holding us because all the speciailists are to busy to get in and do their part. So we requested a patient advocate, apparently the hospital doesn't have these, so they gave us the house supervisor. She is supposedly going to take all of our complaints and problems and present them up in a written letter/email thingy. The 2 options we said are either they get in here do what they need to do, communicate with us and get it done, OR transfer us. She said she has no control over what actually happens but that she can obviously present it and make slight suggestions. So we wait and hope something gets done.
We didn't want to cause problems and strain relationships BUT it's 100% unacceptable to stick us in this hospital room and leave us for 19 days now. It's not fair to ask our doctor questions and have him say ask the other docs, and then the other docs never show up, never call, never nothing. Eli is our priority and something has to be done.
So we aren't sure how today will end up going but I think it's going to be an interestingly long day.
We will update as we know more.
Eli working on standing during physical therapy day 18
Video of Eli laughing at Bob "playing" football.
Loving the sound of tiny mans laugh!
I don't know a ton about your son's case, but thought I could present some avenues (if you haven't already pursued them).
Option 1. Get the right person at Medicaid on your side. You might start with his caseworker (person who signed him up), and get some manager or patient advocate to help on their end. The hospital and doctors are likely to take notice of the ones paying bills. The advocate might be able to help you transfer and have this stay covered. Key is finding the right person at SRS, but they're there. Be a squeaky wheel.
Option 2. Contact these folks. They don't usually get involved with the hospital side, but who knows. They'll at least be able to point to someone else who does, or perhaps wrangle Medicaid into covering the stay AND letting you transfer. http://www.patientadvocate.org/help.php
Either way just keep working on getting more people in your corner and keep your head up. You're doing your absolute best for your little one.
1 comment:
I don't know a ton about your son's case, but thought I could present some avenues (if you haven't already pursued them).
Option 1. Get the right person at Medicaid on your side. You might start with his caseworker (person who signed him up), and get some manager or patient advocate to help on their end. The hospital and doctors are likely to take notice of the ones paying bills. The advocate might be able to help you transfer and have this stay covered. Key is finding the right person at SRS, but they're there. Be a squeaky wheel.
Option 2. Contact these folks. They don't usually get involved with the hospital side, but who knows. They'll at least be able to point to someone else who does, or perhaps wrangle Medicaid into covering the stay AND letting you transfer. http://www.patientadvocate.org/help.php
Either way just keep working on getting more people in your corner and keep your head up. You're doing your absolute best for your little one.
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