It has been a little over three months now and I thought it was time to let everybody know Frank's progress.
Last week Monday we changed Frank's trach to a stoma button. A stoma button is just a straight short tube that basically keeps the hole open. The idea was to slowly wean him off the trach. Well, that same night the button came out during one of his coughing spells. We called 911 and they brought him to the hospital where we met with Frank's pulmonologist. He was going to put a new trach in, but the trachea wall had already started to close and it wouldn't go in any more. Dr. Neureuter felt, that based on his stats and past observations, it would be safe to leave the trach out. (I felt that the trach could have been removed a while ago; so, not sure if it is due to the stem cells.)
Next day we left for Magee Rehab in Philadelphia. We have been here now 1 1/2 weeks and Frank is still doing great without the trach. He has some problems at night (sleep apnea) but we knew that beforehand. He is getting O2 through the nose during the night and when we get back home, Dr. Neureuter is going to conduct a sleep study so Frank can receive a c-pep machine. These machines are designed to help people with sleep apnea.
Frank is receiving a lot of therapy. He has PT, OT, Group, Speech, and Recreational therapy every day, except Saturday and Sunday.
Next week, the physical therapist is going to suspend Frank with a harness and we will try to get his legs moving in a walking motion. He also wants to use a biofeedback device that is going to stimulate the brain into moving different limbs - this will be interesting.
The occupational therapist is working on a remote control for the TV, that allows Frank to change channels, volume, etc. on his own. She also has to design a pair of splints to help with the spasticity in his hands.
Yesterday the speech therapist had Frank do a modified barium swallow test to see if he can start eating by mouth again. He did well, except for keeping the food in his mouth longer than he should before swallowing. She concluded that she will allow him to eat by mouth, but first under her supervision until the muscles build up again and she feels that it was safe for him to do so without her. Well, today he had a full serving of mashed potatoes - he was thrilled.
The biggest surprise for us was that after the trach was out, Frank was talking in a "loud" voice. The first time around (when Frank's first trach was removed) he could only whisper. Now he is speaking in a nearly normal volume.
At times, he is initiating conversation as well as voicing his needs; more often than not, he is asking to eat.
Regarding motor improvements - his spasticity still gets in the way.
We are thrilled for the improvements that Frank has made so far and we still have more months ahead for the stem cells to do their thing.
Looking forward to more improvements
alex
Last week Monday we changed Frank's trach to a stoma button. A stoma button is just a straight short tube that basically keeps the hole open. The idea was to slowly wean him off the trach. Well, that same night the button came out during one of his coughing spells. We called 911 and they brought him to the hospital where we met with Frank's pulmonologist. He was going to put a new trach in, but the trachea wall had already started to close and it wouldn't go in any more. Dr. Neureuter felt, that based on his stats and past observations, it would be safe to leave the trach out. (I felt that the trach could have been removed a while ago; so, not sure if it is due to the stem cells.)
Next day we left for Magee Rehab in Philadelphia. We have been here now 1 1/2 weeks and Frank is still doing great without the trach. He has some problems at night (sleep apnea) but we knew that beforehand. He is getting O2 through the nose during the night and when we get back home, Dr. Neureuter is going to conduct a sleep study so Frank can receive a c-pep machine. These machines are designed to help people with sleep apnea.
Frank is receiving a lot of therapy. He has PT, OT, Group, Speech, and Recreational therapy every day, except Saturday and Sunday.
Next week, the physical therapist is going to suspend Frank with a harness and we will try to get his legs moving in a walking motion. He also wants to use a biofeedback device that is going to stimulate the brain into moving different limbs - this will be interesting.
The occupational therapist is working on a remote control for the TV, that allows Frank to change channels, volume, etc. on his own. She also has to design a pair of splints to help with the spasticity in his hands.
Yesterday the speech therapist had Frank do a modified barium swallow test to see if he can start eating by mouth again. He did well, except for keeping the food in his mouth longer than he should before swallowing. She concluded that she will allow him to eat by mouth, but first under her supervision until the muscles build up again and she feels that it was safe for him to do so without her. Well, today he had a full serving of mashed potatoes - he was thrilled.
The biggest surprise for us was that after the trach was out, Frank was talking in a "loud" voice. The first time around (when Frank's first trach was removed) he could only whisper. Now he is speaking in a nearly normal volume.
At times, he is initiating conversation as well as voicing his needs; more often than not, he is asking to eat.
Regarding motor improvements - his spasticity still gets in the way.
We are thrilled for the improvements that Frank has made so far and we still have more months ahead for the stem cells to do their thing.
Looking forward to more improvements
alex