My husband has finally decided to schedule his surgery, after more than a year of putting it off. He doesn't really have a choice in the matter at this point, since his insurance is being cut off very soon, and it won't be covered at all after that point. We will still have to cover part of the portion that insurance doesn't cover, but at least it wouldn't be the whole thing. His mother (my MIL) seems to be finally coming to terms with the fact that he actually does have a tumor, which is good because finally I stop being blamed for his headaches and stress. 

     It turns out it's worse than they anticipated originally. They originally said it was slow growing, and that it would be years before it would kill him, and apparently in one year it's more than doubled it's size, it was originally the size of a quarter, and it's now moved into his brain. It was a circle just outside the brain, and now it's passed the brain sac, and it's now triangular shaped, and growing into his brain itself.

     The surgery is set for wednesday, and he will have to leave the house around 5 am, in order to get there by 6. I have no idea when he will actually be in surgery, or how long it will take. They also want to keep him 2 days apparently in order to make sure there are no complications, meaning I will have to sleep alone, and take care of the baby alone... I'm not really happy about that.

     I'm also very very torn about it, because I want to be there, before and after his surgery. I want to be there the entire time, but at the same time I'm not really sure how to handle a baby at the hospital all day long, with no movies, limited toys, no space for him to crawl etc. I'm still breastfeeding, and he hates babyfood, and refuses bottles and sippy cups, so I feel backed into a corner. I'm considering trying to allow him to sleep in his stroller, but I don't know how well that will work out. I keep thinking, if something happens I would feel horrible for not being there, being there is the right thing to do, but I just don't know how to make this work. I've never had to do this before. Not to mention the hell I will catch if I'm not there, his mother will never let me live it down.Even though they say it will more than likely go smoothly, I can't help but panic. I guess it's reality setting in.

     If anyone has any suggestions or words of encouragment, I could really use them.


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Apr. 21, 2008 at 6:33 PM

I just read your post and wanted you to know that you are an amazing woman.  You are in my prayers and so is your husband and whole family.  Believe me, what God brings you to, he will bring you through!!

 You and your little one need to be there. Can you get a hotel close by and then come and go? Pack toys, etc. It is worth it to be there.  Is there anyone that can help watch him or help you?

 God bless. Keep us updated!

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Apr. 22, 2008 at 12:13 AM hi. how far do you have to travel? Is there someone you trust to go with you to help with the baby? Jim just had his kidney removal, and was discharged today. We;re stlll in the same city where his specialist is for a few more days...... i have a 17 year old who came down with us to help out with Matthew. IT'S BEEN GREAT...... AND I WAS ABLE TO BE THERE FOR JIM WHEN HE NEEDED ME, AND I WAS STILL THERE FOR MATTHEW.



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Apr. 22, 2008 at 1:28 AM

So sorry Steph.  :(   (((HUGS)))  You will be in my thoughts.  Is there anyone you can leave the baby with for a little while when you go there?  I'm sure you'll figure something out.  Just do what you have to do and don't worry about what anyone else says or thinks.  I wish I were closer to help you out.  :(  Take care.




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Apr. 22, 2008 at 3:37 AM

To answer your questions, it's not far, only about half an hour away, maybe 45 minutes. The only people we have to watch the baby are his parents, and unfortunately they will be there as well, and his mom doesn't take stress very well, and his father isn't so experienced with babies. So I can't really leave him with anyone without paying for it, which we can't afford. Even if I could do that, he wouldn't eat the entire time. He refuses bottles, and sippy cups, and he gags at baby food and refuses to open his mouth. YAY. John has to be there by 6 am. I assume they will get him a room, get him registered, in a gown, average tests like blood pressure, temp, heart etc. They will have to make him sign some forms as well, that usually takes a while (from personal experience). I would assume they won't operate right away at least not for a few hours. Other than his parents, there isn't else we know well enough to care for the baby. So I'm either going to have take the baby and toys etc to the hospital with the stroller, and maybe his movies (hoping for a dvd player), and then let him play on the bed maybe? and sleep in the stroller. That's my best guess. Thank you all for your words of encouragement it really means a lot to me!

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Apr. 23, 2008 at 1:18 PM

My prayers are with you and your husband.  I pray all went well and as expected.   I've had to have my baby at the hospital with me when my mom was hospitalized.  It was no fun, but you do what you need to do.  Often they have children's videos avail in the family rooms.  If you are next door to All Children's you might even consider taking a stroll over there and finding some stuff to occupy the baby.  Ask the nurses.   There used to be an outdoor playground for ACH patients and family.  Not sure if it is still there, but it is worth checking into.

I'll be watching for your update.

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