Pending Brief update.... Good day overall - walked again & significantly less arm, hand, & finger tremors Able to independently suction himself which he has not been able to do for months According to Dr. Kotloff, he is to undergo diaphragm ultrasound & phrenic nerve stimulation EMG on Monday or Tuesday. The phrenic nerve stimulation EMG may not give conclusive results as the needles are placed according to anatomical landmarks & if his diaphragms are not in the normal landmark area then inconclusive results. Dr. Kotloff & Dr. Shook, Neurology do not prefer to proceed with a more definitive diagnostic test, the diaphragmatic ultrasound which involves inserting a needle directly into the diaphragm which high risk of puncturing his lung, spleen, &/or liver.
Overall a productive but very exhausting day...took a few more steps today during PT with assistance & use of EVA tall standing walker moving in a forward as well as backward direction; trach collar breathing trial x 1 which he tolerated fairly well for 62 minutes & during which the Passy Muir valve (allows him to talk) was tolerated for ~25 minutes before his oxygen saturations decreased to 90%; 4 hours of dialysis in the afternoon.[...]
Full update pending...brief update
Perry took his very first steps today with assistance using the EVA tall standing walking - I cannot post videos on PostHope (or perhaps it's that I don't know how to do so) but I have put it on FaceBook. A very, very busy & exhausting day today[...]
We will start the following Novena to Our Blessed Mother for Perry on Tuesday, December 1st - December 9th
O, Most Blessed Mother, Heart of Love, Heart of Mercy, ever listening, caring, consoling, hear our prayer. As your children, we implore your intercession with Jesus, your Son. Receive with understanding and compassion the petitions we place before you today, especially ...(special intention). We are comforted in knowing your heart is ever open to those who ask for your prayer. We trust to your gentle care and intercession, those whom we love and who are sick or lonely or hurting. Help all of us, Holy Mother, to bear our burdens in this life until we may share eternal life and peace with God forever. Amen.[...]
Pending Productive day of forward progress & effort for Perry & hopefully as a result of the family meeting that I had requested last week which took place this morning. It's been a busy few days with visiting w family & friends. Thank you all for continuing to pray. I am anxious to get "caught" up w posts sometime later today (December 1st). Michael made it home safely so I can go to sleep since Perry is also back to sleep!
The night went much better with a fairly substantial decrease in the frequency of stool leakage around the FMS although extremely watery stools continued to pass through the FMS. He was able to sleep intermittently as the nightly routines do not cease - vitals, medications, blood sugar checks, turning, blood draws from his trialysis catheter. Perry awakened feeling wetness to his back @ 530a. The Lopez port valve of his jejunostomy feeding tube had completely dislodged & formula was saturating his back, bed linens, & the floor. Needless to say, he received an early morning bath.[...]