Surprisingly, we may be able to decrease a couple of medications for Philip but just for convenience sake. The newest medication, tetrabenazine, is helping him so much that we may be able to take him off a couple of medications that we started in small doses to help with the involuntary movements. At the same time, we will probably increase his newest seizure medication to try to control a new seizure trend he is having--a long seizure in the middle of the night, usually once a week. He has done well through the day though he's not in his familiar comfortable environment. We have made sure he is as cozy as possible with his weighted blanket and fuzzy house slippers. The chair is not the most comfortable place to snooze but he has managed to much of the time. He is gone now to have his last procedure done--a GJ tube placed instead of the g-tube he has had up until now. This change will allow his medications and formula to be deposited directly into his small intestine instead of his stomach. This way, we decrease the risk of aspiration due to vomiting or the risk of vomiting meds or formula that he really needs. They will now bypass the stomach and cannot be vomited. He will still have some risks from his ever present congestion but it decreases greatly without formula or medicine in the stomach.
It is likely that Joyanna will finish her infusion and Philip will finish his procedure around the same time. That's a miracle. We didn't plan it and probably couldn't have. I just told our nurse that's why we leave the planning to God. He certainly knows how to take care of every tiny detail. The other blessing the Lord allowed us today was because of Joyanna having the infusion, we had a home base room to come back to in between Philip's appointments. Otherwise, we would have been hanging out in various areas of the hospital which isn't the end of the world but it's much nicer to have a little place to hang out in.
Tomorrow we have our interview with the hospital PR at our house. This will be edited into the interview they are doing about OU Children's and Brineura and sending to news stations. Please pray that the Lord will be glorified through what we say and do. I've told people recently, if folks can see just see peace and joy and we can connect that to the Lord, then we'll feel that His Name has been glorified through this opportunity.
This song came back to my mind a few days ago and has blessed my heart again:
NOW I KNOW HIM
Sue C. Smith, Tony Wood,and Joseph Habedank
I have known Him in the best of times
When every day was nothing but sunshine
And His blessings were my daily bread
It was true, I knew Him then and yet
Now I know Him
As my Shelter in the rain,
Yes, now I know Him
As my Shepherd through the pain
He is dear when life is easy
But in heartache, so much more
And now I know Him
Like I never have before
If my faith had not been tested by the flames
How could I have known these depths of grace
‘Cause what is trust until it’s proven true
When I see the valleys He has brought me through
Now I know Him as the Healer of my heart
Yes, now I know Him
The Hand that led me through the dark
He is dear when life is easy,
But in heartache, so much more
And now I know Him
Like I never have before