Monthly Archives: October 2009

After the intense day Aaron had yesterday (5 hours off the vent), which, by the way, was totally amazing, he woke up this morning with a fever of 102 degrees.   Blood work was done, as was a test of his sputum (“spit” for those of us who are laymen) and a review of his last chest x-ray (done late last week).  A decision was made to send Aaron for a bronchoscopy tomorrow at Hahnemann hospital.  This is to be done as an outpatient procedure, but it requires Aaron getting loaded up into an ambulance to go right across the street to Hahnamnn.  This is Aaron’s third brochoscopy since his accident.  He is not overly fond of these procedures, but knows it’s in his best interest to have one tomorrow.   The doctor told him today, because of the fever, they want to rule out pneumonia.  They’ll go through Aaron’s trach to his lungs with a camera and look around first.  Then depending on what they see they’ll determine what to do next.  It is a possibility there is a mucous plug, which they can remove right then.  If it’s pneumonia, they’ll do a test to be sure they are using the right antibiotic to treat it.  I am sure there are more things they do during the procedure that I am not aware of.  

Because of his fever and not knowing  what  caused it,  Aaron was not able to go without the vent today.  His spirits were very good, though, and he said he felt good.  The last time he had his temperature taken was around 3:00 or so, and his fever was down to 99 degrees.    Aaron did have physical therapy today which went well.  Again, because he wasn’t exactly up to par, the therapist went easy on him.  He drove his power wheelchair and did passive range of motion exercises on his legs.  (Because he’s not feeling well, I won’t comment on his driving skills or lack thereof.)   Then we attended a session about what to look for when begin looking for a caregiver when for his return home.  This was to be followed by a video about an organization called “Helping Hands” that trains monkeys to assist people in wheelchairs.   Aaron and I decided it might be easier for us to get a monkey than find the right human caregiver, so that’s the plan!!!   And they are so cute, too!   (The monekys, not the humans.) They go to “school”  for 3 to 4 years of training before they can be “assistants”.    Cute and educated monkeys!   Does it get any better than that?    Anyway, the DVD player didn’t work, so we are going to watch the video at a later time.  We did get to look at a brochure with pictures, though.   Hope they watch the DVD on a day when I’m visiting Aaron, hate to miss that!!

Please continue to pray for Aaron and his recovery!  He’s a tough one, but he can’t do this all alone!    Thanks!

Aaron was off his vent for 5 hours straight today! Until today Aaron hasn’t done anything or gone anywhere while off his vent, but today while he was off his vent, he had 1 hour of therapy, he went down to the 2nd floor to check out the cafeteria and porch, went back upstairs for a make-up therapy session, and he even ate a little bit near the end. He was exhausted when he finished; I think both mentally and physically. It’s hard for us to really even imagine (much less know) what Aaron is really going through, but I can tell you that there is a lot of fear and anxiety in anyone who is weaning from a vent. Imagine that you are having great difficulty breathing; you just can’t get a deep breath and you feel like you’re going to suffocate. Then someone gives you a  machine that makes it much easier to breathe; its comforting and makes you feel safe again.  Now imagine that you have to give that up and you have to work for every breath you take, and even though you’re not really suffocating, that’s what it feels like. That’s what Aaron did for 5 hours today. If he can do this every day, he will gain strength and it will begin to become easier. I thank God he has been able to come this far. I ask that you pray that Aaron will be able to put his life in the hands of God and overcome his fears and to quote my cousin Chuck… soon toss that vent into the weeds!

Aaron had a good day today in every way.    When my sister, Deb, and I arrived at Magee this morning, we were confronted by Aaron’s Respitory Therapist who told us that he was doing the trach collar (he was off the vent) and fell asleep doing it!  So, he was still in bed and we didn’t want to wake him, so we didn’t go into his room.  When he finally woke up, we found out he had managed the collar  for 2 1/2 hours!   Now they could get him out of bed and ready for the day.   He wasn’t interested in the breakfast that was served (what, Aaron, you don’t like cold, rubbery eggs??) so he drank a chocolate Boost.  By that time, the rest of today’s visitors showed up (Aaron’s Aunt Den, Uncle Ed and Uncle Charlie).   After everyone fussed all over Aaron, he had to leave his room to go to Physical Therapy. 

PT was scheduled for 11:00 this morning, and it  actually started ON TIME! (That’s a sure way to make Aaron  happy!)  The therapist worked out both his arms, then gave him some electrical stimulation on his left arm.  That is amazing to watch; when the electricity moves through the electrodes into his arm, you can see his muscles tighten up.   The therapist rested his arm on a board and when the electricity was sent to his arm, his arm would move across the board.   Aaron can feel the movement, however, at this time, cannot initiate it on his own.  (But I have faith that he’ll be able to do that one day on his own! ) 

After therapy, we ALL went back to his room and visited for a little while.  About 12:15, lunch was served and he ate every drop of it.  He started out with Chicken Gumbo, then had a hot turkey sandwich and green beans.  I thought I was being slick by giving him a  bit of green beans with every bite of turkey, thinking he wasn’t realizing it, but he called me out on it…..but I continued to do it anyway and he continued to eat it!    After he was done eating, he sort of kicked us all out because he wanted to relax and watch some football. (And I guess we were getting on his nerves!)  We went across the street to eat and when we returned, to our surprise, the Respiratory Therapist said he had asked to be put back on the trach collar and when I walked into his room, he was sound asleep again (sitting in his wheelchair).  We didn’t wake him and this time he stayed off the vent for 2 hours!   When he woke up he was surprised that two hours had passed.  He also said he thought today’s time off the vent was so much easier than in times past.  That was great to hear, because we all know it is a struggle for him.   So, 4 1/2 hours totally off the vent today.  How good is that?????

Aunt Den fed him supper (BBQ chicken, baked beans, cherry jello) while I turned on his laptop and read him comments from the blog and facebook.  (He really enjoys that, so please continue to comment! ) 

 Aaron was “full of himself” today;  he harrassed me every opportunity he got,  shared his sarcastic wit with all of us and it was WONDERFUL!!!!!!!!!!

We left Magee today when they were getting ready to put Aaron to bed.  He was ANXIOUSLY awaiting Jaime’s arrival after her weekend away.   I wish I could have been there to see that smile he gets when she walks into the room.  But I am sure both Jaime and Aaron were glad I wasn’t there!!!!   So, yep, it was a GREAT day!

When Gina & I arrived at Magee Saturday morning we found Aaron’s room door closed. We know from experience that this means that they are prepping (dressing/transferring from bed to chair/morning hygiene) Aaron for the day. His door finally opened around 10:00. Unfortunately, unknown to Aaron his breakfast had come & gone while he was getting prepped. We had someone bring it back but because he had therapy at 10:00 he didn’t have time to eat it, so off to the gym we went. After we arrived at the gym it was discovered that there was no one assigned to do his therapy so it was rescheduled for 2:00. Although he was irritated this was actually OK because it gave Aaron an opportunity to eat breakfast (bacon & eggs) which he devoured.

Dave (respiratory therapists) instructed Gina & I on how to suction Aaron and we did upper body range of motion with Aaron.  An early afternoon attempt on the trach collar did not last long partly because I believe that Aaron was not in the right frame of mind from his missed therapy session. He really looks forward to the physical activity. Lunch (bar-b-que chicken/broccoli/tater tots) came which Aaron attacked.

Off to the gym again for the rescheduled afternoon therapy session which……you got it…..got interrupted. We asked to be set up in the family lounge where Gina, Aaron & I watched the PSU vs. Illinois game which we enjoyed. Followed by dinner (spaghetti w/ clam sauce) which Aaron also enjoyed. Back to his room where his 7:30 shower got pushed back to 8:30. Needless to say we were all exhausted and Aaron was having trouble staying awake for his shower.

Having said all off that it didn’t sound like the best of days. However, we have changed what we consider a good day to be.

Aaron did not have a fever. He no longer has an I.V. stuck in him. His appetite is great (I now understand where the nickname lunchbox came from). The peg tube (used for feeding before he could eat solid food) is no longer being used and could be removed in the near future. We got to watch football together and comment on the game with him. We got to see him smile and spend the day with him.

IT WAS A GOOD DAY!

For those of you who are praying for Aaron pray specifically for peace, strength & healing.

We love you Aaron.

Today was a pretty good day for Aaron.  He was on the tilt table again today during PT.  He did very well; on the first “ride” the table was tilted so that he was nearly standing straight up and down.  After he was put back down into a horizontal position for a while, they tilted the table again.   This time he was a little less vertical than the first time, because his blood pressure started to drop and he felt dizzy.  But the therapists said he did an excellent job. 

Aaron was in his power wheelchair again today, but has not yet obtained his driver’s license, he is still on a permit.  The therapists are still working on getting the headrest in the right position for him and the sensitivity adjusted.  Sounds simple, but it isn’t!  It’s really difficult for them to get it so it is comfortable and easy (and safe) for Aaron to use.

Aaron had a session today with a Recreational Therapist who was working with him to use some voice recognition software.   Not sure how that went, because I took this opportunity to leave and go grab some lunch and when I returned, Aaron was MIA.  When I finally found him,  I was just so happy to see him, I totally forgot to ask how the session went!  (They took him for a routine chest x-ray, but it took me awhile to find that out.  That was sort of scary!) 

Aaron did about 40 minutes total today on the trach collar.  While that is commendable, I’m getting a feeling  that his success on the collar has something to do with Jaime’s presence……she seems to have a knack at calming him down or convincing him he can do it.  He does so well when she is there with him and not as well when I am with him.  I try to cheer him on,  I really do….but he KNOWS he only has to look at me with those puppy dog eyes and tell me he wants to stop and I’m running out the door looking for the respiratory therapist to come and remove the collar.   I know I’m not helping overall, but I can’t help myself!  I’ll try to be stronger, I promise!

Well, overall, Aaron had a good day.  His spirits were great, he was alert and feeling well.  Please say a prayer for continued healing.  Aaron appreciates it and so do I (and the rest of his family).

Wow, I don’t think we have ever had a day at Magee that went by as quickly as today.  Sam and I got there a little late this morning due to the lovely Philadelphia traffic, so we only caught the last half of his first PT session.  Lucky for us, though, we did get to observe his driving skills yet again, as he terrorized the employees and patients of Magee, in the power wheelchair.  All kidding aside, there was much improvement since his last driving experience.  There were no circles today.  Honestly, I was a little disappointed, I really get a kick out of hearing his devilish laugh when he does it!    After PT, we went to view a video and get information on portable showers and wheelchairs used specifically in showers.  Amazing how far technology has come and even more amazing is the cost of that technology!   After that we went back to his room and he did the trach collar for about 20 minutes unti lunch came.  He was just beginning to eat when he had to move to a conference room where we (Aaron, Sam and I) met with Aaron’s doctor and some other key players in Aaron’s rehab.  We conferenced in Aaron’s dad and step-mom, as well as Jaime, over the phone.   When that was over, we went back to Aaron’s room and again he started to eat his lunch, and a doctor came in the room to talk to him.  Two minutes later, while the doctor was still there, a Physical Therapist showed up to take him to PT.   Rather than fight over Aaron, the PT time was changed, the doctor stayed, Sam and I left to eat lunch and poor Aaron STILL didn’t have his lunch.  Finally, at 3:00, the doctor left, the Physical Therapist came back to his room  to get him and I INSISTED the poor guy eat his lunch before he does one more thing!!!  So, he quickly gulped down a somewhat cool Sloppy Joe and then he was off to PT.  He got to play pinball for the second time today.  He activates the flippers with controls placed behind his shoulders.  He really does well and enjoys that.   

After we returned to his room, he decided he wanted to do the trach collar again.  He was hooked up, ready to go, but he just didn’t feel well doing it.  He was able to last 20 minutes, but it didn’t go nearly as well as it had the day before.  He asked to stop, which was fine, not a problem.   After the trach collar is removed, Aaron often gets more secretions than normal  and his trach has to be suctioned, not a big deal.  Today, however, there was some secretion that the Respiratory Therapist couldn’t get to move up or down with normal suctioning.  He used a “bag” on Aaron, which forced air down Aaron’s trach.  Eventually, the secretions moved and Aaron felt much better.  This kind of activity, though, really wears him out.   He asked to be put into bed and that’s exactly what happened.  So when we left Magee today at 6:00, Aaron was being put into his bed, extremely worn out. 

Forgive me for all the details.  I just want you to understand what a typical day is like for Aaron and for you to understand how days like this can really wear him out. 

 Tomorrow’s another day, Aaron.  We’ll continue to work on gaining time on that trach collar!