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Tuesday, March 24, 2009

Moving Forward

Friday and Saturday night with Megan. I woke up in Ryan's bed with a headache like I had been out on the town all night. We know that did not happen! Ryan was crying on Saturday afternoon about his ear and I spent a couple of hours at the doctor with him for inner ear infection - yes, the doctors office because I dont see enough to get my fill!!! Saturday evening was cuddling Ryan, which I love anyway. James was busy doing things with his friends - they went to a wrestling match. He had fun which is good and he needs to do that, but I wish he would have been home a little more, but it is okay. Pat came home on Sunday around 11 from spending Friday and Sat night with Megan. I had spoken with Maria, a friend of mine who is a physician and got her perspective as a friend, mother and doctor who also knows the dynamics of my family up close and personal. It really helped me too. It confirmed my gut to go ahead and get the trach done. I told Pat that is what I want to do because I will NEVER live with myself if I am questioning the decision not to. He was supportive and understood that a decision like that could literally destroy me, us, our family as I would not be able to get over it. He also did not cross that line either. I have regrouped and have a plan to go on - how well it works time will tell but right now the plan is to get the trach, after a week ENT will change it for the first time and then we will remain inpatient in ICU and learn it all from A-Z - alarms,suction, vent settings, collars, bagging her (sounds funny) - I am not afraid of any of this technical stuff. I feel like it will become part of the routine just like everything elso has. If all goes well after surgery and "training" then we can come home on a portable vent and start therapies at home. I am going to get some sort of housekeeping set up for like 3x weekly to just do general straighten up, vacuuming, etc and deep clean every 2 weeks so that I dont spend my time cleaning when I do have extra time. I want to spend it with the kids and Pat. I dont know what type of nursing assistance I will go home with other than short check up visits, but I am going to hire private duty nursing for overnight in any event so that I can sleep and be rested to do what has to be done during the day. I am not going to worry about the rest of it. Nothing is more important than living every day as happily as possible for all of us. I dont know how much time Megan does or does not have, but whatever she has I want to enjoy with her, James, Ryan, Pat and Sugar and the rest of our family and friends. We dont need to travel to fancy places or go on big vacations - we can do it all pretty much where we are. No pressure. I also am going to set boundaries for myself for what I can physically accomplish in a day as well as for the rest of us. Life wont end if something does not happen, well, in most cases it wont! As it sits right now Megan is scheduled for tomorrow or Thursday to get the surgery. I cant wait to kiss her all up on her face where it has been blocked for over a month. I feel good about our decision and choices for all of us and think it is the best way to know what is what. Her blood pressure and glucose have normalized and her heart rate is only slightly elevated along with her temp, but I mean slightly. So her body is working its own stuff - I knew it could!!!! She is much stronger and moving her hands and arms and starting to move those little feet too!


Lisa said...

I am still praying for you and your family. I know you don't know me but sounds like you need all the prayers you can get. God Bless. I will pray the tracheostomy surgery goes well and that you can kiss her face as much as you'd like. God Bless. Lisa O'Neill

Anonymous said...

Trust your instincts, you are the best judge of who and what your child is, and what she is capable of. We send our love and hope that all goes well with Megan having this procedure.
Aunt Loretta, Uncle Eddie and Michael

Colleen said...

Lots of prayers that the surgery goes smoothly and all the nursing and everything gets set up with out any issues!

Sending lots of prayers!

Steve J said...

Hi! My name is Tonya Judkins, I am friends with Gwen Criswell. I used to work with her. She has kept me up to date on what is going on with your little girl. I am praying very hard that everything goes well for Megan and the family. I know that you can't wait to kiss her face and hug her and bring her home. I will pray for all of this for you and your family. I wish you the best of luck and I know that God is with you guys all the way. God is good all the time all the time God is good!!!!! I know that God is in control and will help your family through this!!! Take care.