Sunday, October 2, 2011

Today I hurt...

Joe's been diagnosed with an anoxic brain injury. At some point, somehow, he was deprived of oxygen long enough to cause permanent brain damage. He's getting a stomach tube put in tomorrow and then off to a top rated rehab unit for several months to see if there is any progress.

one dr said to me yesterday that this is a tragedy. No kidding. Joe;s health was awful, he was on borrowed time... but its not supposed to be like this. Its not supposed to be a brain trauma from lack of oxygen when he was IN SURGERY and under the care of an anesthesiologist!!!

I don't understand any of this. I can barely sit next to him for more then a few hours, and I'm really hoping that his family understands that I can't put JP thru anymore of the hospitalizations.. especially when he's like this. His movements are unpredictable and forceful... and just sounds come out of him. Its NOT Joe... I don't know if he;s even there anymore at all... or if he;s locked in this version of hell where he cant see or talk.

I didn't go to the hospital today and I have such guilt. But my mom was exhausted and has pushed herself to do what she can for me. I just can't bear to take JP to see Joe like this. He was scared in November when he went to see him in CCU and Joe was alert and talking. Now Daddy can't talk or even see him. I don't even know if he knows who i am or who JP is. IN addition JP was coughing and sneezing up until about 4 pm and I can't risk another fever with Joe delaying the tube. If he has ANY chance at all it will be with this rehab hospital.

I'm terrified of the surgery to put the stomach tube in becuase they have to sedate him again.. and thats how we ended up here. The hospital he;s going to is over an hour away from me... i won't get there anytime except the weekends...

I can't figure out if I'm coping well or in total denial. I feel like I emotionally skirt around the really painful parts and avoid letting myself feel the pain. I'm starting to see people treat me differently already. Some people that are casual friends... are conveniently leaving me off of group invite texts.. and that makes it even harder.

I feel like I'm stuck in limbo. I can't say I'm a widow yet... but realistically I have to think that way. Joe;s family doesn't include me in any discussions so I'm alone there as well. JP hasn't asked once to speak to Daddy.. and I asked him today if he wanted to see him and he said no. He's only 4 so I don't know what to do . Since kids are more in touch with things we adults pretend don't exist, I wonder if he knows something we don't. He said to me one day that Daddy was gone.. does he know that in a way he is? If Joe's not going to ever get better then he is right now.. then I hope he isn't aware of anything other then impulses and instincts. The doctors feel that its likely he's not aware since he won't do anything basic on command and since he's not paralyzed he should be able to.

All I know is that my heart is breaking tongiht and it hurts so bad.  I look at JP and I hurt so bad for him as well. Its just not fair!!

Wednesday, September 21, 2011

"I'm worried about you mom"

That's what JP said to me this morning as we were getting ready to leave.

He wont tell me why, but repeated it a few times before getting dropped off at my moms... and he's not asked to talk to Daddy at all which is good as Joe is still not conscious....

What am I supposed to say to him about him being worried about me except that mommy is ok.... it broke me a little this morning.

Tuesday, September 20, 2011

No real changes

Day 5? no.. i think its day 6. Joe is still not awake. Sedation has been off since last Thursday but he's not coming out of this.

Creatine level is increased, but that is an indicator of kidney health and a higher number is not the way you want it to go. He's not ready for dialysis yet, so hopefully his creatine starts to decrease again. If it is just the kidneys detoxing ability thats impaired, then the kidneys need to get a little stronger to finish so he can come out of this.

Saturday he wasn't moving much, now he moves all the time. However none of it is purposeful or deliberate or on command.  The repeat CT scan didn't show the anomaly they were concerned about, but there are still just no answers. Its so hard to watch him move around and have his eyes open but not be able to get a deliberate response.

He's breathing on his own they say.. but I want to talk to the respiratory tech and get a better idea of what that means as the ventilator is still in. He is still running a low grade temp and they can't really locate the reason. These 2 findings are concerning since the brain stem controls breathing and body temp regulation.

I don't want to give up hope or positive thoughts, but I also think i need to be realistic. Yes he could do it again and come out of it, but even if he comes home I have to be ready to live my life as a single mom. The longer he's like this the higher the odds that he'll go to a nursing home.

I have one glitch to figure out with JP's daycare, but thats an almost done deal. I found a retired school psychologist to watch him all day Monday, and half day Tues... Wed he will go to a top rate local preschool in the morning and my mom will pick him up.. friday will be at the preschool all day. My last glitch is Thursday. The retired psychologist has a course to take for 7 weeks. I want to have her watch him after thats done, but I need to sort out what to do in the meantime. I'm hoping the preschool will take him for those few weeks and I can have a friend pick him up...We'll see,, I should have it sorted out by tomorrow.

Saturday, September 17, 2011

Another day and no answers

I just got home from the hospital. Some improvements, some declines. Still no clear answers.

His breathing is improved to more on his own and the ventilator just supporting him, but no longer breathing for him.

Neurologically he's still not showing the right signs, in fact the right side of his body isn't showing any movement now, whereas the other day it was.

Now they are telling me there is a small chance of a brain stem stroke. However he has a pacemaker, 2 stents and steel rods in his hip from a fracture. They can't do an MRI for a definitive answer. He responds to certain stimuli, other things he doesn't.

They just have no clue yet. Todays blood work came back normal. The good thing there is that its not sepsis this time.

I was able to speak with the neurologist today and he is having a meeting with other neuro's today and will be seeking their opinion. I had to laugh when I asked about what time and he said a birthday party, lol. If anyone had a brilliant insight I asked him to call me.. otherwise I'll wait.

I'm so overwhelmed at the thoughts in general today. One of the concerns with Joe's neurological status is that he is perfectly aware of everything around him, but 'locked in' due to the location of the potential stroke.If thats the case he won't be able to move or communicate.. at least thats my current understanding We are just trying to stay positive that there is no actual brain stem injury. The odds of it are low, but they are there.

I'm coming to realize that its best if I start planning things as if I'm a single parent. I was leaving the goal of taking JP to and from preschool as something for Joe to work towards. Now I'll have to find a preschool thats affordable, and has hours that can accomodate my schedule.

I was doing well for most of the day and was keeping busy cleaning. Now the depression is really starting to take hold. I think I prefer having a cushion of shock and denial.I was thinking of sending out a general text to some friends and seeing if they are up to a pizza and wine night.. but I hesitate as the main portion of the group I'm thinking of is a newer bunch of people to us... they know about Joe's health issues... and all I do when with them is laugh... but I just can't make myself reach out.

Friday, September 16, 2011

Today I am.... angry

I'm angry because he ignored all the dr's, all of us, all the warning signs just because he didn't like being diabetic.

I'm angry because I can't take time off work easily.. yet everyone else can.

I'm angry because I have to always be in control and be strong and pretend that things aren't as bad as they are. Sorry folks.. just because he's not expected to die.. he's still in ICU and it is still bad, he's not cured.. its just a matter of time.

I need certain things right now and just can't get them because it doesn't meet anything else that anyone else needs. Things that people will assume the worst of me for even though they are simple basic things. Tonight I had a girls night planned. I can't go. I need friends .. I need to laugh... I need to pretend that nothing is seriously wrong in my life right now.. I need normal. ... but heaven forbid I have a few hours to myself while he's in the hospital again.I need to not have to explain to JP that Daddy can't come home right now. I need to have a break in something.

I don't know what else to say except I'm angry today.

Thursday, September 15, 2011

deja vu to novmember

Joe's back in ICU. I still can't grasp what happened.

he went in for eye surgery to just remove dried blood from the back of his left eye so he could see out of that one until the right was repaired and his vision restored. He's been blind for 4 months from this.

they sedated him. they started the surgery.. barely... and he stopped breathing. CPR was done, he;s intubated again and back in ICU on sedation and in for testing.

Everyone keeps asking me what I need.

I need to be able to fall apart, completely fall apart for a little while. I can't. I have to take care of everything else. I have to work, I have to care for JP and try to explain that Daddy is sleeping at the hospital .. but I don't know if I'm going to have to explain that Daddy is sleeping in Heaven soon.

I need help with babysitters for JP but the ones I can count on give me grief from time to time. Although right now I'm trying to find alternatives because they want to be at his bedside as well. They called a priest last night to give him last rights.  I did find a person that is doing daycare for up to 2 kids and has 2 grown sons and an education degree. The ad states that her hours are flexible which is my issue with my work hours and a regular facility. With any luck this will be a perfect fit and I can have JP there 3 days a week.

I'm hoping they can find more answers today. They are planning on a heart cath again to make sure the stents are ok since they stopped ( the cardiologist) stopped the blood thinners until Joe's eye's were repaired.

Friday, July 1, 2011

My garden is growing.. but have I mentioned I am shrinking?

After an unintentional start towards weight loss last August, I've kept up with the momentum. I made small changes and bought a food scale.. then worked on portion control. I've learned I can eat what I want.. and I do, just in very different amounts.

A lot of people have asked me what I am doing and I always tell them nothing more then old fashioned common sense. I eat healthy, eat much less then I used to (average btwn 1300-1600cal a day) and move more whether it be at the gym or at home. I don't do any crazy things... just all that silly stuff we always hear as basic recommendations... after all.. all those years of trying to take the weight off fast just worked so well for me, lol.

Nowadays I don't even really think about how much my viewpoint and my lifestyle have changed.. it's just how it is now for me and I'm perfectly comfortable with it. I eat whatever I want in either smaller portions or with healthy changes. I also make sure there is always (ok.. almost always) a fruit or veggie with my meals. It took me 40 years for my moment of clarity to finally 'get it'. I don't let myself get upset at the wasted years for what finally became so simple and clear to me. I don't set a timeline in stone.. just a general guide for what I'd like to see when.

Along the journey I've been on I've had wonderful little victories that sometimes take me a few days to realize, lol. Silly things like crossing my legs to sit on the bed or floor... last night I stretched while sitting down and realized I can touch my toes again!.. I was getting to the area right above my ankles for a long time... I'm in a size of jeans that I didn't expect to see for another month or so.. that was a biggie for me, lol. More importantly to me is the fact that I no longer feel like everyone is staring at me no matter where I am. I no longer am the biggest person in a group or in general and I feel like the me that I used to be more then 15years ago.

As of today I've lost 67lbs. In 11.5 more pounds I will be at my halfway to goal point....I'm so glad it finally clicked for me and I'm so glad I can be such a great example to JP for a healthy active lifestyle so that he doesn't have to go thru what I have over the years.