Update on Monday, 12-1-2009: PRAISE!! James Logan has moved from Dell Children's to the Texas NeuroRehab Center down in south Austin. He's located right across from the respiratory technician desk. We are half way home everyone!!!!!!!
As of 11-24-2009
James is doing good. He can sit on the side of the bed for up to five
minutes. Is eating regular food again and has even been able to breath without
his machine for parts of the day. He is also talking really well. If you want to
visit him give a holler for his password and room number, oh and make sure you
are healthy. Yes... regular day to day life is getting much better.
Now
if we can just figure out a living situation for him. We found a house in
Cedar
Park
where the owner had renovated the garage for their handicapped son. Even put in
a roll in shower and ramps. The works. It's for sale for a $134k and would be
perfect for Logan.
Now to figure out how to buy it.
THANK
YOU JESUS .... YOU ARE AMAZING!
Thursday Update: posted by Blue Bains on Thursday, November 12, 2009
A PRAISE !!! James
got moved to IMC
(Intermediate Care) yesterday (Wednesday), and he got a new trach put in. One
with no cuff. So I (Blue) got the best belated birthday present ever - I got to
hear him say happy birthday mom. Yes folks that's right . He can talk !!!! We
are all so excited like we won the lottery. He has been taken off some of the
meds and plans to go outside today .
KEEP PRAYING FOR JAMES: Posted by Blue Bains on Sunday, November 1, 2009
We had a good Halloween, hope ya'll
did the same. We took Johnathan trick or treating, he was Indiana Jones. We are
currently banned from the hospital for the next few days because we went to the
dr. on Friday and Shannon was told he had flu like symptoms.
Because of the situation, Dr. Butler put him on Tami flu. So we were told that
Shannon is not allowed at the hospital
until he is done with the Tami flu, and I need to wait a few days just to be
sure. All's clear so far on my end, and Johnathan (this is Blue's son) and I
both got flu shots just to be sure.
Regarding
Logan....We were horribly
discouraged Friday afternoon when we noticed the rash coming back, his stomach
cramping terribly and he had a small fever. Since then they have re-upped his
steroids (they were beginning to wean him off those). No clue even still what is
causing the rash, but we cannot afford any more damage internal or external. So
we can't afford to try to figure it out we just have to keep suppressing it and
find a happy medium I guess.
Kathryn says that it looks better
now that they steroids are back up. They have several tests on board to look
again at the stomach pain. CT scan, othroscopic exam of the upper gi etc. We
just cannot find a reason for this much pain. Or any of the other stuff. His
blood work still looks great so it seems we are not having to battle the
hemolytic anemia right now at least so this is a good sign.
His
G tube has been postponed until they can get the rash under wraps.
The next week or so is going
to be hard for me to post updates because I am going back to work tomorrow and
Shannon will not be up at the hospital. So
bear with me guys as I get used to a new routine
Thanks guys for your continued support!
KEEP PRAYING FOR JAMES: Posted by Blue Bains on Friday, October 23, 2009
There
hasn't been much to say the last couple of days. Never mind the swooshing
sound that they made as they went buy so I didn't realize I hadn't
posted in days =( .
It looks like his blood work is really coming up. We were having a hard
time maintaining 80 thousand platelets with transfusions every other day. As
of last night he was at 264 thousand (way closer to normal) and he hasn't
had a transfusion in over a week. That is a huge hurrah in my book.
He has not yet passed the swallow test, and they are talking about doing a
different type of feeding tube to get the remainder of the tubes out of his
nose. So he will hopefully be staying in PICU until they make that decision.
The reason being is I don't want him moved then have to come back to be
watched post op. If he is going to IMC then he needs to stay there and move
forward, for his state of mind.
He's still in PICU in room 245 at Dell children's Hospital. For all of your
info. He cannot talk but he can sign a tiny bit, and he is using a dry erase
board to communicate things by writing them down. He is very awake most of
the time but will tire quickly so takes naps during the day.
I hope things continue to go on this same path.
KEEP PRAYING FOR JAMES: Posted by Blue Bains on October 20, 2009
Sorry I didn't post anything yesterday guys! The days go by so fast these days.
We do have some good POTENTIAL news. He is doing very well on the Trach. They are able to wean his ventilator settings a little every day so far. He's also being weaned off the versed (sedation that gives amnesia). This means he's more awake every day and asking questions. Today he asked how he got here . So this is a good sign. He's watching a lot of movies and is aware of his stuff in his room. He wants to put everything where he can reach it so he doesn't have to bother the nurses with stuff. We are finding some middle ground in this department but its definitely and interesting battle.
We talked to Dr. Harrod this morning. She is quite pleased with how he's doing on the trach and is considering the following possibilities for the future.
They are trying to get his days and nights straight
They want to get him trained and tested on swallowing this week
They are working toward a home ventilator setting on the trach
If / When he reaches these goals he can :
be mobile and start physical therapy
start looking at learning to eat solid food again (this will be a slow transition)
move out of ICU into intermediate care
Some of these things could happen as early as Monday so get ready Logan is about to be running over nurses or your toes again. *smiles*
Have a great day everyone!
KEEP PRAYING FOR JAMES: Posted by Blue Bains on October 15, 2009: Ok, well it is decided. On Friday afternoon Logan will be having a tracheotomy. http://en.wikipedia.org/wiki/Tracheotomy .
This is an effort to make it easier on him to get his lungs well since it appears at the current rate that it will take 6-8 weeks of healing before he will be a candidate for another attempt at self support. This being said the following things will be easier. Communication (he will be able to mouth the things he wants to say although we are talking about learning some sign language in order to communicate a little better and lessen his frustration). We originally thought eating would be possible but this will not be allowed until he is off the ventilator completely . This particular tracheotomy will have a cuff and a ventilator attached instead of the tube going down his throat. So he will remain on the feeding tube for the time being. Again some movement will be gained from this but unfortunately not much . He will still be confined to the hospital bed at the moment.
Lets see did I miss anything else ?.... Oh yes today we had another wonderful thing happen , his platelet count went up to 87 all on its own from like 85 I think. But this is the first time since he's been in the hospital that it has actually gone up not down. This is all good news in our books
Update: October 7, 2009 | NOTE: Doctor's Round Table Meeting set for 2 PM today, October 8th ....
Wednesday October 7th, 2009 by Blue Bains
We don't have alot to say today other than the day (Tuesday) went by ok, a few incidents of frustration. The Bipap machine was having to be set at a very high level of pressure but he was able to maintain the first few hours without his lungs collapsing. This is a great thing as that was a huge concern from all the staff involved. He made it through the night but he was having to work very very hard for every breath. He stayed awake all night long. And at one point got so frustrated with me and dad for "not taking the mask off and taking him home" that we got grounded and told to go "sit in the corner" or "go home". He wasnt being disrespectful just honest. Bless his heart he is so frustrated with the situation.
So obviously this morning he was so tired, he could barely even shake his head yes / no, or lift his hands to try to tell us stuff. They decided that he needed to be re-intebated at this point. So they did that this morning. They will try this for a few days and we'll discuss the plan tommorrow (October 8th @ 2 PM) at the "round table meeting". More updates to come after this meeting.
PLEASE CONTINUE TO JOIN US AND THIS DEAR FAMILY IN PRAYER FOR JAMES LOGAN -
here's the latest update as of 10/06/09 - Tuesday by Blue Bains
1. The good!
Well we got the ventilator tube out! Yeah!
Now its a watch and wait. They have him on a bipap machine (much like a c pap machine) to help him make more use of the air he is getting with his breaths. He\'s doing the work, its just being helped along some. So far that looks good.
2. The bad,
his lungs are still under pretty serious duress, and there is a chance that he will not be able to do this on his own. If not they will have to reinsert the tube for a few more days to help him heal some more and try one more
time.
3. The ugly,
If for some reason, this does not work we have two options at that point.
1. trachiotomy, on a probably permananent basis
2. We're not talking about number two......
So that all said, he's very grumpy and very frustrated cause he HATES the bipap machine. He doesnt like this big bulky mask on his face that he cant wear his glasses around this makes for a very grumpy Mr. Logan.
Why do I like that he's grumpy? It means he feels better. If he has enough energy to be grumpy I like that. Before he didnt have enough energy to care about much of anything.
URGENT PRAYER REQUEST for James Logan Brewster Fighting Cancer...
Our friend's grandson took a severe turn for the worse and has been in Dell Children's Hospital ICU since September 11, 2009. He is having extreme difficulty in breathing - as a matter of fact (at this time) he is not breathing on his own and is on a type of Resperator .... he has absolutely no good immune system and they are keeping him sedated because of the breathing tube, etc. When I spoke with his Grandmother this morning ... the Doctors are saying that the next few days are critical for him to start breathing on his own (because of the scarring to the lungs, etc.) ... she said that the analogy they used was ..." he\'s circling the drain ... we just don't want anyone to flush ..." WE KNOW WE SERVE A MIGHTY GOD .... HIS PLANS ARE NOT OUR PLANS ... COME LORD AND HEAL THIS CHILD ...
Posted by James and Nancy Henson at hensonshouse1625@att.net on 9.22.09
Original Prayer Post by the Hensons on 5/6/09:
This is the grandson of some good friends of ours. He is 13 years old and has had surgery within the last couple of months to remove a cancerous tumor on his Spinal Column. The removal of the turmor has caused paralysis and the lab results have come back that this cancer is malignant and they are going to start both chemo and radiation at the same time. They (the doctors) are trying to get this cancer into remission but if they can\'t then he has SIX MONTHS TO LIVE.
Please join with us in prayer for total and complete healing for James Logan and that this could be a time that he and his family could truly come to know Christ as more than a name.
Thank you,
James and Nancy Hensonat hensonshouse1625 at att.net