Huge Tumor

[ppearl214]

Ronan, I know its been a few days, but wanted you to know I'm thinking of your dad (and you and the family) and hoping all is getting better. Sending prayers and wishes.

Phyl

[Ronan]

Hi

Thank you very much for all the care and support everyone has shown. I am deeply touched.

Some good news, finally. My dad has regained consciousness, though his conscious level is still not perfect. He sometimes still go unresponsive for a while. For some strange reasons, he seems to be most awake at night and sleeps the most in the afternoon. He has managed to move his left arm, up to his elbow level. His grip is quite strong. His is able to follow simple instructions, such as clutch fist, show 2 fingers, three fingers, etc. His right hand is till very weak, though we notice some movement. He is able to move his head and blink his eyes and can answer simple questions we post to him. 

The doctors did a tracheostomy, to wean him off the ventilator. He is mostly breathing on his own, but the doctors want it there just in case. Last night, he tried to pull off the tube after we went home and was scolded by the nurse. We see these as good signs, because he seems to be more alert and aware of his surrounding. Today, he managed to move his left leg, though just by a little. The physiotherapist has already visited him and is stretching his muscles out a little.

We have been talking to him a lot and he seemed to understand what we were telling him.

I will keep everyone updated on his progress. Thank you once again.

Ronan

[marymomof3]

Ronan - thank goodness your father has woken up.  I have been praying for him.
Mary

[Kaybo]

Ronan~
At last, some good news.  I hope it only gets better and better...
Your father, you, & your family are in my prayers!

K

[Brendalu]

Ronan,

Prayers and continued good thoughts coming your way.  Wonderful news, I'm sure your Dad will continue steady, good progress.
Brenda

[leapyrtwins]

Ronan -

thanks for the update.   I'm glad to see your dad is making progress.  Small things will eventually lead to big things - remind him to have patience.

Keeping you and your family in my thoughts and prayers,

Jan

[Jeff]

Ronan,
Great news! While progress seems painfully slow, healing occurs none the less. Your father's situation reminds me of what I went through. And, while pulling out tubes is not great, I do see it as a sign of progress. I am told that I was very quick at pulling my tubes out. I eventually had to be restrained. Even then, I somehow managed to move my head close enough to my hand so that I could pull my tubes while restrained!  And, movement is great! I am told that at one point, I was unable to move the left side of my body. Strength and control gradually returned. Now, I move at will, lacking only fine coordination (for example, typing is difficult). At any rate, I will continue to pray for you and your father.
Take care,
Jeff

[4cm in Pacific Northwest]

Ronan,

Quoting You
“He is able to move his head and blink his eyes…�

If he is able to blink BOTH eyes this is amazing. It means that his facial nerve is still functioning. Many of us did not wake up with this as one eye was paralyzed by the Bell’s palsy from the trauma of surgery. Count this as a plus and success.

RE Quoting You

“For some strange reasons, he seems to be most awake at night and sleeps the most in the afternoon�

The brain stem controls bodily functions- sleep included.  This "may" be why your Dad’s time clock is backward. Hopefully as the swelling goes down the brainstem will readjust. My sleep pattern prior to surgery was all over the place- I have more normalcy now that my brain stem is straight (the tumor pushed it into an “sâ€? shape i.e. now it is gone the brain stem is not so affected)

I have one piece of advice to pass along – being that I too had swelling post surgery. If they have your father on Acetazolamide (sold under the trade name Diamox)

http://en.wikipedia.org/wiki/Acetazolamide

… And the time comes for him to come off of it- be sure to NOT have him stop abruptly but wean off the drug slowly. I speak from personal experience here. I had an Oregon doctor abruptly stop mine (even when I told him this contradicted what I was told to do when being discharged from the hospital ) and I swelled up like a puffer fish and had regression in my balance, facial nerve etc… and a CSF leak.

MORE HUGS

Daisy Head Mazy (aka “4)

[Jim Scott]

Ronan:

I appreciate the update on your father's condition, as does everyone here that is following his progress after his brainstem stroke. 

Your father sounds about as impatient as I would be in his situation.  Pulling out tubes is ill-advised but understandable, out of frustration on his part.  Patience is not so easy for some folks but of course, this will be a journey that requires patience on his part, yours and others involved in his recuperation.  I trust your father will continue to improve as the days go by.  Many folks are praying for him and for you.  I'm one of them. 

May this pass and may your dad be well again soon. 

Jim

[sgerrard]

Hi Ronan,

Wonderful news, I'm glad to hear your father is back. Pulling tubes is an excellent indication of recovery, whatever the doctors and nurses may have to say about it. He is a person again!

The next step is to get him off the ventilator, so he is fully self sustaining. He is almost there, and that is the main thing - get all the body machinery working again. It sounds to me like he is regaining more mental awareness with every passing day as well. It really is very good progress.

Enjoy the peace and quiet while you can, soon he will be grumpy and complaining about every little thing.

Best wishes for continued progress,

Steve

[cmp]

Ronan,

Though I haven't posted to this thread before, I've been following it and am so very glad to hear that your father has woken up! Thanks so much for keeping us posted, and very best wishes for his continued recovery!

[Jeff]

Ronan,
How is your father doing?
Jeff

[Ronan]

Hi

My dad contracted a super strong bacterial infection in his blood last week and is currently being treated with one of those super strong antibiotics. They seemed to be working, since he has stopped developing a fever and seemed quite like his old self. The doctors are sending his blood for regular culture and the results from the first test seemed quite encouraging. We are keeping our fingers crossed.  Because of the infection, his doctor has put off inserting a permanent shunt for him until he has recovered from the infection. He still has a drainage tube sticking out of his head, which needs to be replace every two weeks in the operating theater. We were told that with the external VT tube, they are able to adjust the fluid pressure in his brain accordingly before deciding which type of shunt is suitable for him. He is still on a feeding tube, drip and trachea, though they are weaning him off the trachea soon, as his breathing is improving.

One thing we noticed since Saturday last week is that after some encouragement and a lot of effort on his part, he is able to move his right hand and fingers slightly. This is the first time we are seeing that and are very happy. His conscious level seemed to be improving, he was awake for most part of yesterday and can quite easily be awaken from his sleep. His grip on his left hand has become quite strong and he always tug at this blanket and bed sheet. We noticed two days ago that his hand and leg muscles on his left side began twitching and it would go on for a while before it stops. We informed the doctor and nurses about it and they all said it was nothing that we need to be worried about. They seem to see that as a good sign.

His progress is painfully slow. His doctor has told us not to "expect him to jump out of the bed tomorrow", which we fully understand. He told us that it will take months for his condition to improve slowly and that he is confident that he will recover in time. He believes it is the little factors that is affecting him recovery process, such as nutrient, electrolyte levels in his blood, sodium level, sugar level etc, so they are monitoring these factors very closely.

Thank you for all the concern everyone has shown.

Ronan

[sgerrard]

Hi Ronan,

Thank you so much for updating us on your father's condition. I'm sure it can't be easy for you, and it sounds like you will need a lot of patience during the slow recovery process ahead. I'm glad to hear that the hospital is able to respond effectively to a development like the bacterial infection.

To me, since I am not watching him every day, it sounds like he has made some good progress. His improved breathing, longer periods of being awake, and active movement on the left side are all good signs.

Stay strong and take care of yourself as you stand by his side. Patience is always the watch word on this forum, and I think you need a double dose. Have faith; you will see results in the end.

Steve

[Kaybo]

Ronan~
So sorry about the infection but glad they seem to be monitoring & responding to it.  Know that prayers are still coming your way for your father, your whole family and the doctors attending to him.

Peace,
K