Difficult post for me to write.

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Ah Jim.....So sorry to hear about your wife's trouble..For 13 years Cheddarguy & I worked with the MDA on a fundraiser called the MDA Tub Run. The people we met thru this organization are inspiring to say the least.....Best of luck with this step, remember they only go up from here.....and with your help she can make it up the steps to the top.....
 
Jim - Just seeing this thread now. My thoughts and prayers are with Denise, you and your families at this time.

Thank you for the updates and please keep us posted on her progress.
 
When we got to the hospital today she was looking much better. Still weak and very tired but it looked as if she would be home on New Years Eve. The social worker was there talking about making arrangements for the supplies she would need at home. Then the doc came in and said he still wants her to stay until her whitecount comes down more. I am really getting tired of this. I want her home. I cannot stay at the hospital during the week because I have to go to work. New Years Eve I'll be staying with her there. I'm not doing so great right now. She is my reason for just about everything I do. She has supported me in very endeavor and I am so damn frustrated that I can't do more for her.

Her Muscular Dystrophy is some thing I can't fight. There is some amazing research going on but more needs to be done. Adult MD seems to take a back seat. All that money we send to other countries that hate us and do absolutely nothing in return could be spent on medical research for so many conditions. Now we have an adminsitration with one adviser who is a disciple of Josef Mengele. Zeke Emanuel, Rahm's brother has stated openly that those who would not be able to contribute to productivity or who face shortened life spans should not receive the same type of care that others would. Just make them comfortable and save the heart transplants for those who can go to work. The ones who have great insurance will now have to pay taxes on that which they invested in for things like my wife is going through.

I have not been myself for the last couple weeks and it is getting worse. Your cards and letters really help. Keep em coming. Taking them to her and reading them and telling her who is who and seeing the look on her face and my cats are pretty much all that is keeping me going . Work is just something I have to do. I don't feel like writing. I have a couple students in line but that will not be a for a month or so. I have to do the Puerto Rico trip in a couple weeks but that does not even excite me. Screw it . I'm going to bed. Later.
 
Jim, it is difficult to read that post.....I can only imagine how you must feel. I am sure, however, that she knows that you would do anything if it would help. Unfortunately, the science of medicine is not always what will get someone through an illness. Your caring and support along with those friends to both you and her will help keep her strong and get you both through this.

I hope you realize just how many people here (and I am sure everywhere you both are) are pulling for you both. This world can sometimes be lacking in great people so we will will pool and pray to keep the few (such as you and your wife) that we have around.
 
Jim .. she knows your there for her as much as you possibly can .. I bet she takes much comfort in that.
Please ... Ask your friends for whatever you need, whatever it is .. they want to help and I'm sure they feel frustration at not being able to do more for you and your wife.
 
Jim, we feel your frustations and your pain. We've all had infirmed love ones and know the situation is tough on everyone involved (even the family pets know when something isn't right), not just the patient. We are here to help in any way we can, even if it's just venting. We understand (or at least try). Let us know what we can to do help...you know we'll be there. We are a diverse group with a vast variety of resources where you least expect it...just ask. We pray for both of you.
 
Hello Jim,

I just stumbled across this thread today and am saddened to hear of your troubles...Being in the medical field I understand both sides and I know the doctor is doing what they think is best for your wife. Doesn't make it any easier for you though...As for yourself I know you must have already figured out that this will be a long road so make sure you take care of yourself so you are able to help her. You getting sick won't help her!

Remember that many people are willing and indeed happy to help however they can so don't hesitate to ask! As Elena said SB is a diverse group with a huge variety of resources.


You and your family are in our thoughts. Take good care of yourself and may 2010 be a better year!
 
A postcard is on its way from Thailand for you both. Hope it brings a little sunshine!

Having nursed a sick child with a terminal illness I understand your pain and frustration.
Just keep on keepin' on.
You are in my prayers.

Rachel xxx
 
Hi Jim,

Just stumbled upon this thread and my thoughts go out to your family. I can imagine the pain and fatigue you are going through but as many have advised, please try and have some well-deserved rest! Here's wishing Denise a speedy recovery and take care of yourself too!
 
Yesterday was a bad day, Sorry and thank you guys for letting me get that out. Today started off worse. At 9AM I got a call from her mom. The hospital called and said her breathing was bad, O2 Sat dropping, and we better get up there. It is normally a 15 minute drive from work. I made it in 8. Not good considering the water in my eyes made it hard to see good except for the squiggly lines and stars floating in my peripheral vision. My BP was way up I knew it. When I got here she was in a very deep sleep and did not look very good. But her breathing had stabilized. Her nurse came in and told me he looked in and she did not look good and got worried. And called us. I started trying to wake her. Don't know if it was the shaking or the tears falling on her that woke her up.

But within about 15 minutes she was fully awake and focusing on me, her brother, and her mom. The doc came in and was talking about the attentiveness issues and calling in a neurologist. Was also ordering another CT scan of the brain to rule out a mini stroke or other anomaly. He also mentioned stopping her psych meds again. That is when it hit me. She was on a fairly heavy dose of antidepressants when she went in. they stopped em cold turkey before the surgery. Then started them up again. Then stopped em again. Then started em up again at very low dose. I have been through all of her issues with this and know that doing that is not good. I convinced him to not only keep them going but to bring them up closer to her original levels. They do not have a shrink on staff for consult and they are having trouble getting ahold of hers. He ordered the increase which she got at noon. By 3 PM she was still tired but woke up easier and was even more alert. I also talked to him today and I guess it really hit me how close she was to not being here. The Gall bladder, pnuemonia, feeding tube, and antibiotics she is getting now was pretty aggressive treatment as he explained. He also said that if we were not so aggressive it was very likely that we would not be having the conversation we were. By the time I left to go back to work I was a basket case.

Oh and hearing that 8 US Service members were killed today in Afghanistan on the radio on the way to the hospital didn't help either. My son is over there now.

I didn't get much work done and was pretty much left alone. I would do a little bit. go in the back bay, do what I had to do, get a hold of myself, do a little more. I was in such a dark place that I was expecting to be spending tonite at the hospital. Instead when I got here after work she was as I said doing even better! Talk about a world lifting from my shoulders. A solar system is still there but minus a planet.

Finally I got to do the feeding this evening. It made me feel better. The nurse supervised and we were done in 5 minutes. And I made an observation. 10 minutes or so after the feeding she was dozing and laying at about 35 degrees. Recommended is 30 min. So she was theoretically ok as as far as chance of choking. Well she began to have difficulty exactly like what scared the nurse. I raised the bed as I talked to her and she was fine. It makes sense. Even though she has been getting fed via the tube it was on a pump over a long time. We just started the BOLUS yesterday. A very good chance that filling her stomach faster may make breathing difficult until she gets used to it and we need to be more upright. And her stomach was small to begin with thanks to the enlarged gall bladder pressing on it and her not being able to eat much. So many issues and it does take everyone helping and perhaps even more important observing and taking note of what is going on. I'm in a better place tonite. Thanks to everyone. Ph and she'd kill me if she knew I revealed it but I am staying at the hospital tomorrow night and every night this weekend. They have an extra bed in the room for me. When the neurologist came in with her night nurse I told them what she said about me staying. That she'd like that and maybe we could fool around being that it is New Years eve! They gave her a look at that I'll tell ya. Thanks again for all your support. It is not over yet by a long shot. But maybe we have just won another small battle.

I wanted to let you all know this new stuff. You have been a big part of keeping us going. Good night I need to try and get some sleep. Didn't do so good last night. I'm exhausted. Jim
 
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