Thursday, January 6, 2011

Crazy, Busy Day

Today has been a ridiculously busy day...  After getting Adam bathed, dressed and up for the day, our day started with an appointment to Massachusetts General Hospital for a CTscan, which lasted 2 hours...  Good news there is Adam's CT scan looked great!  His ventricles have decreased in size and everything is well with his shunt!  Praise the Lord for good news today.  By the time we got to Spaulding Adam had only a few minutes to rest before he had all his therapies back to back.  I was exhausted for him.  He had troubles in therapies today because his stomach is still very upset.  He was given an IV today so that they could give him some IV fluids to help rehydrate him and also help with his left eye to come back to center.  He was pretty tired for all this therapies and just had another off day.  I believe medication causes Adam's stomach to be upset and I believe it was caused by the general anesthesia.  Hopefully by tomorrow it will all be out of his system and his stomach will start to feel better.

After Adam finished with therapies he was given a roommate tonight.  We have been so blessed to have made it this far with no roommate, so making the adjustment is hard.  Adam's room has become our home and until today it has really been the only place we had our own space.  This also limits our time with Adam and I am not comfortable with that.  The bright side is, it gives us a chance to really get to know someone.  His roommate looks about Adam's age, but other than that I don't know too much about the roommate, he has lots of visitors all the time so I haven't had a chance to really meet anyone.  I am looking forward to an opportunity where I can meet the family and get to know Adam's new roommate.

At Spaulding Marilyn Spivak helps to educate families with the resources as to where your next steps might be.  I have met with Marilyn several times and today while meeting with her she was trying to help me with choices for our next steps.  She explained to me that we were going to be so limited because of the level of care Adam requires.  Hearing the words she spoke to me and explaining to me that skilled nursing was at some point going to be in our future, it just deflates me... I had to quickly grab onto hope, and remind myself that God is bigger and He knows our needs and all I have to do is trust Him to follow... He has already marked our path.  I pray that God continues to give us hope, joy, and strength for the days to come... only He knows what is to come for Adam.  I am believing with all my heart that at any point He can heal Adam and until FULL restoration has been done, we will continue to walk in the way He marks out for us, no matter how difficult it may be.  Psalm 25:4-7  "Show me your ways, O Lord, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. Remember, O Lord, your great mercy and love, for they are from of old. Remember not the sins of my youth and my rebellious ways; according to your love remember me, for you are good, O Lord."

6 comments:

Anonymous said...

Love and Blessings to you all...I love you and am holding you up in prayer throughout each and every day and night. Love, Kimberly

Kathleen said...

Hey Amy!

I just want to encourage you with something I know you know, but might remind you...we just talked on the phone the other day, and you told me a story of a mother that brought her son home and has made lots of progress since being home. Remember, it doesn't stop at the facility! Praying for FULL recovery for Adam (and Cale!)-for our men! Love you!

Oh and yesterday I was talking to Cale about you and Adam. When I was done he said "Hi Amy! Hi Adam!" and waved :) We miss you!

Anonymous said...

Amy,
I think I have told you, that we (mother/father) take care of our son, Jonathan, 24/7 (who is a TBI) and if we did not, he would be in a skilled nursing facility. We have been at this for over 3 and a half years. Each state is mandated and has programs available to fund your keeping Adam at home. We have made so much more progress with Jonathan at home than he ever did in the hospital and we chose NOT to take him back to rehab. We are NOT the only ones doing this... there are many... skilled nursing facility does NOT have to be in your future... YOU CAN DO IT... You just have to walk through it.... and you KNOW HE is with you every step of the way. I am always available if you want to talk or email. Vicky Scott

Anonymous said...

My Dear Amy, You know, it irks me when "officials" bring downers to patients families. Oh, I know they are doing their job, and I know they don't try to be bearers of "bad" news. I just had an experiance with a home nurse that didn't quite get the story right with my new granddaughter and.....well, irked. I am going to pray that Father soundproofs the curtains and you have a feeling of privacy and homelikeness when visiting Adam. Praise God you had your room for so long. Father, as you know, has already prepared a place for Adam's continuing recovery. He only picks the very best. I love you and am trusting Father for you and your sweet family. Hugs, Marion

Anonymous said...

Hey Amy. I've tried getting up to see you guys but we keep getting calls. Glad to hear the surgery went well and the trach is out. Things sound like he is doing great. Thinking of you guys. I'll try to make it up soon.

Your favorite medic
Sean

Karie Garner said...

Amy,
Keep the faith and keep believing that Adam will be completely healed, but until then, God will pave the way for you and it will all be wonderful. He has blessed you beyond belief and will continue to do no less for all of you. I believe that roommate was handpicked by God to be in Adam's room for the purpose of getting to know you and getting to know our Lord and Savior if he does not already. His family or one of his visitors will no doubt be drawn closer to the Lord once they get to know you. Praying daily for all of you! Claire says hi to Mackenzie!

Blog Archive