Monday, December 3, 2012


Eli is really struggling.
He has hardly slept the last 2 nights.  He's been up choking and requiring alot of suctioning.  last night he started not being able to keep his O2 sats up without oxygen.  He was needing suctioning every 15 minutes.  His temp went up, which left him with a high hr and resps.  By this morning he could barely sit up or open his eyes.  He has spent the entire day sleeping and is on O2, needing suctioning and still running a fever.  Yesterday he only peed twice and today isn't going any better. 
This morning his primary doc and I had a long talk.  He's starting Eli on antibiotics.  We also discussed the options we are left with to deal with eli's secretions.  The goal is to get Eli started on IV robinul, hoping that this will allow his system to absorb it better.  If this doesn't work the next option (and last option) is a Scopolamine patch. 
We also discussed the seizures and the neurological changes.  Eli's keppra levels came back incredibly low.  Again either he's outgrown his dose, it isn't working for him anymore, or his body isn't absorbing it properly.  For now he's having us up the dose.
He's thinking that there are multiple things going on here.  The seizures, the secretions, and Eli being sick.  He doesn't believe that fixing 1 will fix all.  He's also not sure right now how much of this is disease progression and how much of it is fixable issues.  He told me he doesn't want to make any promises as he isn't sure. 
He and I discussed the suggestions from the new palliative care doc.  He really likes her and trusts her thoughts and instincts.  He believes that she will be a good fit on our team. 
We also talked about how we hate progressive disorders and how I'm not ready for another progression.  How I'm not ready to lose something.  I'm not ready to take a step back, knowing that there is a chance that we will never regain ground.  Rarely have we regained ground in regards to Eli's health and interventions. 
I'm not ready.  I wasn't ready to learn the true meaning behind the word progression.  I wasn't ready to watch my child suffer thru something this torturous.  I'm not ready to hold my child while he's choking knowing there is nothing I can do.  I'm not ready to feel his body limp against me because he doesn't have the energy to hold himself up. We've been here before and I'm not ready to be here again. 
Please keep our family in your thoughts.  Keep my tiny little warrior, eli, in your thoughts as it's so hard for his little body to fight thru all of this.  Please keep our oldest 4 in your thoughts, as it's just as hard for them to watch Eli struggle.  This round has come on fast, and just yesterday afternoon they were able to sit up and play with Eli as he followed them thru the house.  They will come home from school today to find a very sick little man unable to sit up at all.  Please keep Bob and I in your thoughts as we have hardly slept for 3 days.  We are exhausted and having to make big tough decisions.  Never a fun mix.
We will update as we can.

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