Monday, January 5, 2009

Day 219 - Jan 5, 2009

My mom and dad left today, but Ronnie and Tracy are still here. We had a kinda lazy day truthfully. Ronnie stayed with Kevin all afternoon and I took a nap, which was super wonderful. And even Kev didn't get dressed or anything until like 5pm today. At that time we just brought him down for dinner and then we watched a little bit of TV and took him back up to the hospital at 9pm.

I am getting even more nervous the closer we get to Thursday. I am just not sure how this is supposed to work. From what I am gathering (and nobody has explained the surgery yet - even though I have been asking for two months now) they are planning to change the shunt first and drain all the excess fluid off and then put the flap back. I don't know why, but it just scares me that this isn't really a 'fix' for the issue, it's just a 'we aren't really sure what to do so let's try this' situation. I guess I am most scared that it won't work and I am just not sure what would be the next step. I mean, do they teach me how to drain his head every day or what? And before I forget - someone did ask if it has become less painful and yes, it has. He rarely cries now and will often just hum the "Subway, eat fresh" song, lol.

I am going to just quickly answer a few questions now:

Kathy - you asked if Kevin has therapy daily and he has speech and OT M-F and PT every day of the week.

Petra - I am really sorry that happened to your M-I-L. I do agree that arrogance in a doctor is often dangerous. The doc we had this weekend made a comment to me that I had to work really hard to not say something back to him. He was tapping Kev and the fluid was moving pretty quickly and we always pull off all that we can while it's flowing. He told me he was going to stop and I told him to keep going while he could and he said "I do have other patients to see too. You aren't my only one, ya know". I couldn't believe it. So I guess it's normal to do a half job on patients if you can't fit everyone into your schedule. Pretty sad, huh? I wonder if he would have put the flap back and not bothered to staple his head shut due to time constraints? (sarcasm)

Someone asked about their air miles and I have never used either Fisher House or Make-a-Wish. I am not sure how that would work so let me know if you can donate to our family as help is no longer available for my family to come down. The one organization that has helped us out in the past is Operation First Response. For anyone else, I will check into donating to them. Even if it's not for our family - I am sure they will find a use for them.

Ok, off to bed for me...

6 comments:

Alison said...

I would keep asking about the surgery and what exactly will happen during the procedure. I know that the doctors and surgeons will probably have a meeting before hand to go over things and maybe you can sit in or have a list of questions that they can try and answer? Also if you have to sign any forms or release paperwork you must be allowed to know what they're going to try and do during the surgery.

I would have given that doc from the weekend a piece of my mind but I guess I can see why he would feel that way. Yes he does have more patients and a schedule but that was still very rude to you and to Kevin. I'm glad that the tapping has become less painful for Kevin to endure.

Good thoughts heading your way as we count down to the big surgery day! Prayers that this will be the 'fix' that gets things moving even further in the right direction.

Anonymous said...

I asked about Air Miles. I can only donate to Fisher House. I don't have enough for a flight to give your family. I only about 5000. But when they are about to expire, I donate them somewhere so that my 5000 can be combined lots of other people's extras so that somone can fly. So I guess it won't work out.

Make-a-Wish is just for kids but I thought that you all were working with the Fisher House.

Jenna said...

I donated my air miles to Operation Hero Miles. Can they provide your family with any help?

Kris said...

Hey there Leslie, Breezy & Kevin! I can't believe you didn't slap the crap out of that doctor. It must be everything you have to work on being civil in those situations! Good grief.

Saying as many extra prayers as I can fit into a day that all goes well and as planned on Thursday. We will all be out here praying for Kevin, and you and Breezy all day. You must be so scared - my gosh.

God bless you all, and please know that thoughts, prayers, support and load upon load of extra special angel hugs are always on their way to you all. HUGS.

- Kris, a Soldiers' Angel from RI

LISA said...

Leslie,

I believe you were smart. It is wise to remember that most of these doctors are friends and they have your son's life in their hands every single day. I do not question their ethics, but I know I would feel better having them on my side and caring a little more than having the attitude some have had as of late...especially with Thursday so near.

With kid gloves...and grit your teeth...as hard as it must be. The good old Golden Rule usually always seems to, in the end, be the best way to live. You've been there a long, long time and you amazingly have held up very well.

Remember kindness given..hopefully returns kindness back.

Communication has always been the key to everything..if it were me, I'd call a meeting and not go in alone. Take someone with you who is a positive force in both your life and Kevin's life.

Let the doctors and staff know how you feel. They need to know you want out of there as much as they probably want you out of there. Working together..for the sake of Kevin..is a good way to approach them.

If they take the time and care in doing all they can do with Kevin when it is "his turn"...then they won't have to return so quickly to come to his aid the next time. I cannot imagine not getting all of the fluid out when his problem is obviously getting so much worse.

Is this hospital understaffed ?

What can it hurt to call this meeting to let your feelings be known before he goes into surgery on Thursday ? I think they know they are not dealing with some idiot and at times, I feel that they do not care so much for parents there 24 / 7..especially the ones who gain so much knowledge.

You care about your son and they simply need told that. Switch it around to them...how would they feel it happened to be THEIR SON laying in that bed ???..but say it with kindness. : )

Praying for a positive outcome on Thursday. This boy certainly needs to get on with his life and it seems as though it's reached a standstill, until the fluid issue can be resolved.

God Bless you all and praying for Thursday.

STAY STRONG and focused on getting Kevin well. I hope this helps.

Anonymous said...

Is there anyone you can post a fast post here Thursday as soon as you know Kevin is out of the OR and how he is doing? Many of us will be waiting and praying he is OK. Your site may crash from us all checking in all day and evening lol I know there are many many prayers groups and individuals that will be waiting to read how he is.