Friday, November 23, 2012

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.

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