Dear family and friends
What a wonderful day.
This morning the trachesotomy was easily removed and Grayson is now much more comfortable. Not only is his oxygen saturation actually higher but he is able to speak a tiny bit more loudly.
The bonus is that he was able to have apple sauce and thickened apple juice today!! He was able to use his new favorite word "more" several times. His swallow response is still a little slow so the plan is for the speech therapist to continue this delightful treat for him for the next week until she is sure he is no longer at risk of aspiration. Since he is unlikely able to sit still enough for a proper swallow test (and x-rays), this slow approach is the safest.
His other therapy progress was again muted today due to the as yet unidentified infection. It is absolutely true that the longer you stay in the hospital the greater your chance of infection. It is likely the return of the MRSA infection and so he is back on antibiotics. Culture results are checked daily for 5 days so we are still waiting on confirmation.
Wednesday morning an evaluation team for another sub-acute rehab facility will spend a couple of hours with Grayson. This one is located in Pomona. Brant and I agree that as wonderful as the facility in Bakersfield is, we must have something to compare it to. I have a field trip to Pomona scheduled for later this week.
I was informed today that the goal is to have Grayson discharged from his current facility by Wednesday of next week. While this is obviously wonderful news, reflecting his amazing progress, it makes the reality of him moving farther away right around the corner. We have a lot of hard work of therapy to do for the next seven days – if for no other reason than to make me feel more secure when we aren't there to insure his daily care.
Each day is such a blessing and a treasure. There is no way I can describe how overwhelming it is to walk into his room, wrap my arms around him, and feel him hug me back. Something so simple that I will never take for granted again.
Give someone an extra hug today and thank God that you can.
Grace and peace.
Regina
If anyone ever needs an example of blessings that are "pressed down, shaken together, and running over," all they have to do is talk to you. And the good news just keeps on coming! Thinking back to your note about Grayson cheating on "no drinking" while brushing his teeth... we don't usually think of "cheating" as a "higher function," but neurologically, it's certainly evidence of both understanding rules and creativity in circumventing them. Every day brings him, and you, deeper into a world that's rich with already existing solutions to challenges of locomotion and communication.
ReplyDeleteAnd you want to see a REALLY big smile? Once he's finally cleared to drink on his own, without supervision... bring him something from a juice bar.
What a landmark day - trache removal and applesauce, signifying breathing and eating safely on his own. Praise God!
ReplyDeleteLove you, Regina,
Robin G.
Hi Regina,
ReplyDeleteFrom one mother's heart to another, I can completely understand how joyous you must be feeling at seeing the wonderful progress that the Lord is allowing Grayson to make! Life is, indeed, precious. May God continue to lavishly bless you with His love, strength and faithfulness!
Love,
Suzanne Winn Babbitt
I eagerly typed the blog post url in this morning hoping for some happy news after all the sad news I've been hearing from Haiti. I was not disappointed. Thanks for bringing a huge smile to my face. I will be hugging people all day!!
ReplyDeleteHi Brand and Regina:
ReplyDeleteHUGS ALL AROUND!!!
I remember X-Trach day, and apple sause!!!!!
And drinking!!!!! ...er, ice chips and water!
God is so good. And, now on to another setting in the near future... step by step, mile by mile.
In Him,
Doug