It's Wednesday Already!!!

We ended up talking with Eli's primary doc again on the choking.  The newest meds have made no difference.  The last guess is the robinul.  They are increasing his dose over the rest of the week and then if that's not enough then another increase on friday.  If that still doesn't make a difference then they will do some exploratory things under anesthesia to try and figure out if we are missing something.  We were here so long ago and are not ready to be here again.
Eli also appears to be having a potential reaction to the neurotin.  We have seen what are possibly breakthrough absent seizures as well as he is either very sluggish or very intense.  He is also tripping and falling and running into things way more often than normal.  Neurologically something has definitely shifted.  He's also struggling with body balancing of fluids.  He's bloated, but dry. 

I  met with my orthopedic surgeon again today.  My hand incision has been struggling and continues to open up.  He asked me today if I have been diagnosed with a thyroid issue or a metabolic issue as that's when he sees these issues.  I'm also struggling to use my hand and the muscles are tight, my thumb is now pulling into my palm some and I have limited wrists movement.  Still having trouble gripping things and major loss of strength.   It hit me like a ton of bricks when he asked if I had a metabolic issue.  He is one of the docs that hasn't been involved in the Mito workup and knew nothing about the suspicion.  It terrifies me that so many doctors are independantly coming to the same damn conclusion.  The surgeon has taught me a new way to steri strip and is sending me to some intensive OT.  I start the OT on Monday. 

Some of my testing has come back and my primary doc is calling around to get me into a Geneticist.  We know how much time this takes, but are hoping we can get this done fairly quickly. 

We will also be meeting with a lawyer this week.  We will be drawing up a will.  It's something I feel we shouldn't avoid.  I think I will feel more comfortable if this is all done and prepared as a just in case.  I never imagined that at 33yrs old that this is something I would ever consider.  I don't want to think about these things, let alone say them out loud, and write them down.  But alas here I am.  No we don't think I will die.  But yes we are being realistic and knowing that some major things are coming up and with any major thing comes great risk for complications and unexpected turns.  We want to be prepared.  We have that responsibility as parents to be prepared.  We are now even more thankful that we have been seeing a grief counselor for months, before my journey really began for myself.  She has been an amazing support and a place for me to openly state my thoughts and fears, and be able to plan and talk out loud. 

Right now we are chugging along best we can.  We have begun Christmas decorating and are trying to throw ourselves into the holidays as much as we can.  I am getting a better control over my emotions (atleast at this point) and have done a better job of staying in the numb realm during the main parts of the day and only fully letting the emotions roll thru when the kids are either at school or late at night.  This may not be the options that therapists all push for, but nothing changes the fact that I'm the mom to 5 young children...4 of which already have to deal with the reality of their little brothers illnesses. 

I will continue to keep some updates coming over the next few days.
And don't forget to check out the post just below this one for a slideshow of our family photos.  They turned out absolutely amazing!!!

Family Pics

I don't have time to get up a full blog post right now but just wanted to share the link for our family pics!  Enjoy!

Family Pictures Slideshow

Family Pic and Updates

Saturday we had family pictures done.  It was alot of fun.  So far we have a sneak!

We spent the rest of the day at the park and relaxing as a family. 

Sunday the big 4 went to the farm with Lauren for the day.  Bob, Eli and I went to church, ran errands and had some quiet time together.

Monday I had an appt with my primary doc.  We regrouped from everything that has been going on. She began testing me for mito.  11 tubes of blood and 1 cup of pee.  She also is testing me for Factor V Leiden.  She really wants to verify if I have the same blood clotting disorder as Eli before I have brain surgery in January. She re-ran my anemia labs and if my B12 is still really low, then it means my body isn't absorbing it and she will switch me to B12 injections.
My hand is still struggling to heal. The incision doesn't want to close up, and I'm still struggling to move my fingers and wrist. The surgeon will be working to get me into OT next week.

Eli is also having a rough time. He's choking and gagging so much. His sats are dropping and he isn't moving air well. Then afterwards his lungs are really wet and he's worn out. The docs originally thought it may be his stomach so put him on more meds to try and help his stomach move, but no change. So now they have added a new med to try and help calm all of the nerves in his stomach. They think the nerves are in overdrive, hypersensitivity. The ultimate suspected reason for all of this is that Eli's body has built up an immunity to his robinul. This is a worst case scenario. We are worried. We avoided a trach about a year ago, and are fearful that it will be brought up again. Eli's restless leg syndrome has also been in full swing lately. He just got a weighted blanket yesterday from his grandparents for his birthday. The docs are hoping that if he sleeps with it that it might be just enough pressure on the nerves to keep things calmer during sleep.

We ended up heading to Wichita late in the evening Wednesday. We spent thanksgiving day with my family and then Bob, Eli, and I headed back here yesterday afternoon. The 4 oldest are hanging out with my parents until Sunday afternoon. I'm looking forward to some quiet time around the house these next few days. Bob and I are planning on going out for a much needed date night tonight. Today I may go do a touch of black friday shopping but nothing to major.

This morning I have another nurse interview. The agency is working hard to find us 2 more RN's. We are going to need round the clock nursing during my surgery and immediate days in the hospital, and then nursing 7 extended days a week during my at home recovery. Currently we have nursing 6 days a week 12 hrs a day. So they are having to find 2 more RN's to help cover such extended hours. I'm hoping to get both new hired and trained during the month of december. The goal for the 1st week of January is to simply spend as much quiet family time together as possible.

The oldest 4 are ok. They are so busy with school and choir and violin and math club and student council and book club and church and friends and so many other activities that they participate in.
The kids now all have their own bedrooms after some basement re-arrainging and they are loving it.  The youngest 3 (Eli, Ari, and Ben) all have bedrooms on the 2nd floor down the hall from Bob and I.  Emily and Jace now have bedrooms in the basement.  The kids also have their own family room, complete with Tv and couches.  They absolutely love it.  We are glad we were able to come up with a way to allow them to have their own space.  They are busy decorating and organizing and they are all hoping to get a few more decorations for their rooms come christmas time!

As always we have alot going on. Emotions are running high. I'm doing the best I can to appear as strong as possible for the kids and for friends and family. I'm exhausted and feel like crap each and every day. I feel rushed as my surgery is only 46 days away. There are so many things I want to get done and ready and organized. Now that Thanskgiving is past that throws us straight into Christmas and this is a huge holiday for our family. I'm trying to constantly remind myself to be in the here and now with everyone but my mind can't stop. I'm scared about Eli's instability right now. I'm scared about something happening to him while I'm in surgery or the hospital. I'm scared about the fact that I'm the only one in the world who knows EVERY drop of Eli's medical information and care. I'm scared about having 5 children and going in for brain surgery. I'm scared about what could go wrong. I'm scared for the recovery. I'm worried for my family and caretakers. I know the mental, emotional, and physical strain and exhaustion that comes from caring for a sick loved on. They will not only have Eli, but me now too. In short..I'm scared. And nothing makes it better.

I will update again soon.

checking in

It's been alot. 
I had surgery on november 2nd on my right hand.  They ended up having to cut 2 ligaments and shave down my tendon.  I got my stitches out and large bandage removed 1 wk after.  I have a smaller brace now and am able to start moving my fingers, but not my wrist.  I'm not able to hold anything yet and am still having to only use my left hand.  that makes everything very slow and frustrating, but I'm slowly figuring it out.  Next week I get to start practicing with my wrist and if still struggling then he will start me with some occupational therapy.
I also met with the neurosurgeon last week.  My surgery is scheduled for January 8th.  He said I will be in the neuro icu for a few and then on the floor for a few.  Then a minimum of 8 wks recovery at home.  We are rushing to get life set up.  We have so many things to organize between eli's nursing care and ben's respite worker. 
I meet back with my primary care doc next week.  The docs have all decided that we need to run some more labs, do some hearing tests, discuss my vision loss more, and send me to a geneticist for.. yes as most of you have guess...mito testing.  It's been talked around for a bit by us and the docs, but is now being strongly suggested.  We haven't said anything up till now, but we are being asked frequently so it's easier to simply mention it at this point.
I'm exhausted and sore.  My mind is constantly spinning.  I can't completely focus on anything, although my mind is always going.  I've moved past the crying phase into numb.  I've been in the numb phase many times as we have made our way thru Eli's journey, but it feels strangely unfamiliar when it's in relation to my journey.

Jace's GI issues have been flaring and his GI doc has been working hard to get it back under control.  He's had tests run and meds changing.  Hoping to see some relief for him quickly.

Eli is keeping us forever busy as well.  He's back to choking and gagging.  It's not yet as often as it used to be but alot more violent and large o2 drops (70's and 80's).  we have been draining his stomach frequently to try and help.  His Gi doc thinks that the nerves in his stomach are becoming so sensitive that any sensation is causing them to fire.  He's also concerned that Eli's body may be building up an immunity to his robanul which is VERY bad news.  They are changing around some of his meds and hoping to see some changes.  If this doesn't help over the next 2 weeks there will be more changes that bring more risks. 
We've also been working hard on Eli's vision.  He's having a full functional vision evaluation next week.  It's very clear that his depth perception and peripheral vision are shot.  we are hoping to find ways to strengthen them and help him be able to safely move around unfamiliar environments independantly.  In our home we use red tape on danger areas and we never move furniture. 

The other kids are staying busy.  Alot is on their plates and on their minds.  Our kids are so strong and amazing!

As my hand strengths returns i will try and update more.  this update has taken almost 1 1/2 hrs to type.