Day 32 Update: DUDE

Dude . . . I'm the King of My Tubes.  See 'em?

Just don't touch my tubes.  They are mine, ya know, & I don't want you messing them up for me.

Vent settings were decreased slightly since a very slight improvement was seen by the doctor today.  With the help of five people to adjust tubes, lines, and more, Jeffrey spent almost two hours in a REAL chair today.  Go Jeff!!!  Mom said as soon as he got settled in the chair, the "conversations" began.  "Clothes . . . shoes . . . store . . . Coke . . . goodbye . . . work . . ."  The man has a plan, that's for sure.  Sometimes you just look at him and it seems as if Jeff is quietly plotting his next move.  He was completely exhausted after being up for the first time in over a MONTH, but that's okay.

My brother and I hung out for several hours tonight and talked some more about . . . store . . . Coke . . . and work.  Seeing a trend here???  Being the awesome big sister that I am, I taught him how to pull the mask from my face and snap it back.  I'm sure someone in the hospital will be a lucky recipient and appreciate me for that!  :)  We also did some random cognitive stuff (I touch my eye, he touches his, etc.).  He's much more compliant and cordial than my students.  That's for sure!  I'm big about putting stuff on Jeff's lips.  They've been SO dry and because of the vent, he's only allowed to use a minty cream provided with his mouth care stuff.  After a few hours, his lips looked much better.  Another crazy thing is that Jeffrey has a black eye - still don't know where it came from - and it seems to be darker and more swollen today.  Poor guy.  Looks like he's been in a fight, but I think he won!

One funny story is that I placed a pillow under Jeff's right arm this evening.  Right after that, he moved the pillow and set it atop his arm.  I said, "Oh, you want that on top of your arm.  Okay."  Less than a minute later, HE put the pillow under his arm.  Rotten creep!

Before I close, I wanted to share that Mom received a really neat email today from the mother of one of the guys that lives in Jeff's group home.  "S" and Jeffrey go back many years.  They went to school together in Austin as young teenagers.  The email said: "When I took S back to (the house) on Sunday afternoon, he stopped and checked Jeff's chair to see if he was there.  Then he went to the dining table and checked.  I don't give S enough credit so many times - he is more aware of his surroundings and people are more important to him than I imagined.  Of course L (who works at the workshop where the residents of Jeff's home work) had told me on Friday that Jeff was still in the hospital.  While so many family and friends are praying and watching Jeff's progress, his friends from the house and workshop are also missing him."

That message made me smile and warmed my heart almost as much as seeing and spending time with my brother did tonight.  Thanks to all of you for continuing to love and pray for our amazing Jeffrey!  We WILL get him out of this hospital eventually!

Jeffrey Update, 9.13.11

I had a long & late day of work, so here is Mom's note from today.  Go Team Jeffrey!

"Today has been interesting.  Dr. Q said the xray showed some improvement even from yesterday.  Rick wanted me to ask about a rating on a 1-10 scale.  Doc said Jeff started at 0 and is now a 5.  The identification of the specific bug he’s fighting with antibiotics to treat and the hyperinflation of the lungs is what he says is helping.  Also today the staff got Jeff up to a cardiac chair for just over an hour.  At first he really enjoyed it – signing “go, store, coke”.  He all too soon learned that those were waiting but complied.  After about 40-45 minutes he was tired & asking to go back to bed. By the time he got back to bed he was really tired & went to sleep.  It took 5 people to move him because of all the stuff to clear but went extremely smoothly. His heart rate & blood pressure held really well.  He is still on the vent of course. 

Again it’s a slow process but I feel that Jeff is really starting to gain some ground. Thank you all for being such an important part of his success.  Every single person makes a difference.  I’ve said it before & will again “Jeffrey either brings out the best or the worst in people – they reveal who they are”.  Obviously you all are a great group of people.  We thank you all & love you all.  We’ll stay in touch again soon.  Love,  Jeff & Family"

Update on Jeffrey: Day 30

Progress is ssslllooowwwww but we'll take whatever we can get!  Sorry for the delay in an update, but here is a nice, long one for you.

From Mom today (9/12/11):

"Dr. Q was in this AM & said progress is happening.  He said causing the lung to open [Jeff is on the PEEP/CPAP vent settings to keep his lungs from completely deflating when he exhales] & keeping it that way is showing some progress.  He said it was the best improvement he’s seen since Jeff’s arrival.  Still slow progress though. This is hard because we all are used to seeing results based on actions we've taken.  However this is physiology: you have to take an action, then step back & watch for the results over a period of anywhere from hours to days.  So we are seeing some progress but because Jeff & his lungs are living organisms, we have to watch that reaction to the things that the science of medicine does.  His vital signs have all been good, his oxygen level has remained in the mid to high 90’s (sometimes even 100%); his color is good; he is still on the ventilator; he is tolerating the tracheostomy very well.  The thing he complains about is he wants his shoes, wants to go, wants to eat, wants a Coke.  With the trach & a feeding tube down his nose, nothing can go into or past his mouth.  So guess what he has to look forward to – just a matter of when.  He’s been such a great patient.  I would have had this room torn apart & threats of bodily harm to anyone who came near me!  He does like the bed when the percussion & vibration modes are on; otherwise forget the bed."

I spent about five hours hanging with Jeff on Saturday.  Poor guy is SSOOOOO bored!  I took a call from a friend because he was resting quietly when I heard him start smacking his lips.  Jeffrey has always been a "sound maker" to entertain himself, so it was nice to hear him back in action a bit.  Later, he began doing this hum type rattling sound from his throat.  It must've worried the nurse because she called respiratory and the RT (resp therapist) was in the room within a minute or two.  He checked all of Jeff's tubes & lines and agreed with  me that Jeff was making all the noises.  I signed and said aloud, "Jeff is funny," and Jeffrey pointed to his chest to mean that it was him being funny.  :)  Outside of being very possessive over his tubes, he carefully touches his vent tubes, trach, and the many other things to which he is connected.  If something is moved or cleaned, he'll feel around to make sure it's all back in place.  Another funny thing he keeps doing  is with the NG (nasal-gastric) tube down his nose.  He'll stick his tongue out, make it very pointy, and touch the tube with his tongue to make sure it's still there.  It's hilarious to watch!  I've been asking God to please bring me my brother back, and Saturday felt like he was finally with me.  Jeffrey isn't 100% himself yet, but he *IS* on his way!

Another neat thing did happen this weekend.  While I was at the hospital, Mom was able to get away for a bit.  Her new hobby when escaping the hospital for a bit (outside of going home to shower and do her hair) is shopping.  Her shopping consists of buying stuff for the ICU nurses, nurses in her department, and anyone else that she thinks "needs" something.  (After refusing Mom's stash of snacks multiple times, I wound up leaving with a 1/2 sandwich and corn chowder for both Todd and me.)  Anyway . . .

A few minutes after Mom left on Saturday, a man walked up to the entry of Jeff's room door/window/curtain and stood there.  The nurse followed behind him and unlatched the door loose and in came a chair.  This was not some ordinary chair.  This was a chair that folds in to a bed.  I realize that doesn't sound that exciting, but family is not permitted to be in the ICU outside of visiting hours much less to spend the night.  That policy has been waived since very few people know how to communicate with Jeff.  My amazing Mom has been sleeping in a non-reclining, waiting room style chair since the night Jeff was admitted into the ICU (3.5 weeks ago).  She was so excited to see her big, new, cushy chair but even MORE excited to later learn that it laid out flat like a bed!

Since Jeffrey is on "contact isolation" (i.e., we all have to gown/mask/glove up when inside his room), I took an extra gown and wrapped the chair with it.  I also took a marker and wrote Mom a message on it for their one month anniversary of Jeff's hospital stay.

I made her sit in the chair for a photo.  If you know my mom, you know how tiny she is.  Her gown is WAY too big and that chair just ate her alive!

A whole new world!

Sister needed to entertain herself while Jeffrey pushed her away so he could hum and smack his lips in peace. I had already loaded a bunch of GOOD music on his iPod, so I broke out the phone camera.  Exhibit A:

I'm in my gown & mask, but I'm not a scrub.

Next steps: Continue to wean him from the vent assistance.  While he's breathing on his own, Jeff is still intubated for safety measures and to allow the PEEP/CPAP to protect his lungs.  After he is extubated (whenever that will be), he will be transferred to a specialty hospital/rehabilitation center (not for druggies!).  His 40th birthday is October 1st.  We were hoping he'd be home by then, but that is doubtful.  However, we WILL be having a huge party for him when he finally gets sprung!

Thanks for your prayers for our Jeffrey.  When I say "our" I mean our brother, son, uncle, cousin, nephew, and your friend.  The prayers, love and support you have all shared with us is something we can never repay.  However, we can share Jeffrey with you.  If you ever need a hero, he's your man.  And I am SO PROUD of him.

Brother & Sister Time, Update for 9.5.11

Day 23 in the hospital, Day 18 in the ICU.

I spent several hours at the hospital today just hanging out with my brother.  I hadn't seen him since Thursday night, and I really missed him.  Thankfully Rick stayed at the hospital last night & Mom went home and slept for 13 hours straight.  It was her second night sleeping at home in over three weeks.  Sleeping in chairs (not reclining chairs) isn't the most restful, comfortable sleep for anyone.  However, being the awesome Mom she is, she refuses to leave the hospital.

Jeffrey looked good today and seems to prefer the trach to being intubated.  I don't blame him.  He was very interactive with me today, asking (signing) about his bag, his toy, work, and more.  I slathered lip stuff on his lips in hopes they will get some moisture.  I irritated him and wiped his face with a wet washcloth.  I charged his iPod.  Not much else I can do, unfortunately.  Jeff wanted to hold my hand almost the entire time I was there & I was more than happy to do it.  If I offered him my left hand, he pushed it away and grabbed for my right hand.  So maybe he's a little rotten now!  :)  After Mom got there, I became the evil sister and Jeff didn't want much to do with me.  Yes, rotten!

Since I had my left hand free, I sneaked a quick shot of this:

Obviously taken before Mom showed up and turned me to chopped liver.

Jeff will have a cat scan of his chest tomorrow to see if there are any other abnormalities or issues.  His left lung is still not fully inflating as it should be, and doctors want to see if they are missing anything.  Depending on what the scan shows, they may/may not start the weaning process to get him off the vent.  Jeff is not on any other medications other than an NG tube for nutrition (can't eat or drink yet) and a saline drip.  He did get some potassium through his picc line and after a percussion treatment and suction, he requested medicine and got one unit of morphine.

All in all, progress is very very very slow.  We'd love to just get him out of that bed and take him outside or give him a Coke to drink, but that can't happen until he can breathe on his own.  I just want him to be better, and we're all praying like crazy for that to happen.  Thanks for your continued prayers for my brother.  If you'd like to leave a note for Jeff and/or Mom in the comments, I will get it to them.

Update 9.4.11

I have spent more hours sleeping than awake since Friday night and regaining some semblance of being a human again.  I must definitely learn to balance everything in my life better, but I really don't know how to do that right now.

The good news is that Jeffrey is handling the trach well.  Man, he's a tough little brother of mine.  Here is Mom's letter from today:


"Hi Family & Loved Ones,

As always it's a new day.  We have good news on our front and hope that you all are having good things happen as well.

Jeff is doing well with his trach, color is good, xray shows slight improvement.  The doc covering today said that Dr, Q will be in tomorrow and he expects that they may start the weaning process again.  I think Jeff understood as he is trying to make sounds again.  He is being very cooperative, seemingly understands that all of this paraphernalia is to help him get better.  He gently fingers all of the tubes but doesn't pull; we have had his restraint off for 2 days now.  He'll rub his eyes, face or nose but only touches the tubes.  He is very curious about everything and feels as much of the equipment & attachments as he can.  I almost wish I had video of what he has done.  He LOVES the bed with its percussion and vibration treatment - think it has helped a lot.  He also loves it when he gets his oral care (every 4 hours) as it cleans his teeth & moisturizes his mouth.
He has had nothing to eat or drink for 3 weeks now (but has a tube from nose to stomach delivering glucerna).  He is still on the vent but hopefully that will change soon.  He'll be in the hospital a little longer but I forecast a good outlook.

Looking forward to a celebration when Jeff gets out of the hospital and back to himself.  Today he is making sounds again & enjoying the ability to do so. Rick is going to stay the night tonight and has been at his side all the way (as protective as any papa bear could be).  Let us hear from you & you know you'll be hearing from us.   With love, Jeff & Family"

Because I haven't felt well & didn't want to take my germs to the hospital, I haven't seen Jeffrey since Thursday night.  I'm looking forward to seeing him tomorrow.

9.2.11 - Trach Day

Last night was tough for Jeff's sister.  I had a hard time leaving the hospital and cried off and on before and after I finally headed towards home.  To much of the outside world, Jeffrey may not "look" perfect.  However, he is my perfect brother to me.  I hate, hate, hate that he is going through all of this after being chosen by God to live such a difficult life as it is.  I am upset that Jeff's perfect appearance will be further altered.  At the same time, I want my brother back.  I need to be back to the place where I'm irritated with my little brother for his "call of the wild" (screaming) and signing work incessantly until your arm is sore from his signing so hard with his arm.  I'll just have to remember how much I'm wishing for it when it starts up again!  :)

After working a 12-hour work day and being banned from the hospital because of a sore throat, I'll share with you Mom's email from today after the tracheostomy.

"Trach placed without any problem.  Nurse stated not much bleeding.  Almost strange to see his mouth without the big tube in.  Think he'll like it much better.  He'll start waking up in a bit; morphine ordered for pain.  Dr. Q (the ICU doc) looked further into lung & said it looked good.  Jeff was a little anemic so he'll get 2 units of blood today.

Rick brought his razor & shaved Jeff this AM before procedure.  Jeff was sleeping before procedure so didn't put his sunglasses on today.  We're back in the room with him now (we = Jeff's parents - Dad, Joyce, Rick, Mom).  Dr. S (doctor who performed the trach) was so nice.  He said even though this is a simple procedure there can be complications and he likes to pray with patient & family if that was okay.  He said a great prayer.  He is such a nice man & so impressive in all respects.

Our thanks to all of you for your visits, thoughts, prayers.  Today could be a great day for a new beginning.  Love to all, Jeff & family"

Here's to new beginnings . . . goodness knows Jeffrey is due one.  Thanks for the prayers that have gotten us this far.  We're asking for more so that continues.

Update for 9.1.11

From my Mom this morning:

"Dr. Q was in & said Jeff has to have a trach because he just can't clear the secretions on his own. It will allow him to get weaned from the vent & get up and around. Dr. Q said the weaning just can't happen without it. I know this for a fact as I saw what was happening this AM. (Jeffrey became anxious and restless which is a side effect of a patient being "air hungry.") I feel very confident and know how tough Jeff is. He has tolerated all of this so well & will probably love getting the tube out of his throat. The trach will probably occur tomorrow (Fri.). The doc says it is very short term."

I, of course, do not want my brother to become dependent on a ventilator for his breathing.  At the same time, I hate that he has to have yet another thing done.  Please pray that the tracheostomy goes well and the trach is VERY short term - enough to get Jeffrey off the vent and back on his own.  Then, we'll pray the trach can be removed.  Jeff has enough challenges in life and really doesn't need a trach to become yet another.

Thanks for the prayers.  He WILL be well soon, and we so appreciate everyone sending prayers, cards, calls, messages, etc.  You are treasured by my brother and our family.