Update

first of all, THANK YOU, for the emails and the text messages.... they really help, especially when the kids have gone to bed and I'm left alone to think about the here and now, the future, all the what-ifs... It can get pretty overwhelming, so it's good to read your messages. Thank You. I really really would like to thank each of you personally, and if I can find time I will, but as you can imagine, time is not something I've got a lot of to spare right now, so for the time being, please accept this as my semi-personal thank you.

Mortimer's Dad is better. He can now talk without starting a coughing fit that will leave him blue in the face. He's still far from being all good, but he's ok. Today, they put in the pic-line, which should allow him to continue treatment at home later this week, if they can find a drug combination that works against his infection AND can be administered at home. The drugs aren't all compatible with the home-care setting, so we have to wait and see if they can work out a combination that works and that is manageable for us to administer (for example, right now he is on 3 different antibotics that each run for over an hour, 4 times a day. Do the math, I'd have to be up around the clock to change bottles. At least in the hospital, the nurses take care of that around the clock)

I was there for the picline insertion. I've always been there, because it's the CF nurse practitioner that puts it in and sometimes, they need an extra hand to do things on the periphery of the sterile field, like tie the gown in the back or release the turniquet while they are inserting the line. It's NEVER bothered me before. But today, I was wearing a sweater, we were in an very stuffy room, with the curtain drawn around us and I was wearing a mask. I happened to look down in the 3 seconds were it's kinda gory.... And then I became totally flushed, light-headed and wanted to throw up. But I still had to release the turniquet! I held onto the side of the bed for dear life, but I just knew I was going to pass out if I stayed, so I sat on the bed on the other side of the curtain and somehow, Mortimer's Dad was able to releqase the turniquet with his other hand. I was too busy taking deep breaths (ironic!) and hoping I wouldn't pass out!

So for now, I wake up extra early to pack luches, try as I might, I just cannot get the hang of doing them the night before. Then we hussle through breakfast and get to school The girls have been surprisingly cooperative, not arguing with each other and gettign through the morning as fast as possible. BB is having a hard time. She misses him tremendously, keeps asking over and over (and over!) why he has to do the medicine at the hospital and not at home. And she keeps peeing in her pants at school. But the teachers she has this year were also Dumpling's teachers the last time he was in the hospital, so they are being extra nice to her, changing her as often as necessary and insisting that I keep on bringing her, because if I had to keep her home in the morning, it would be a disaster.

Then I spend the morning at the hospital visiting and brining eadible food (mental note: with the cut backs, if you ask for Kosher food, you get eggs for every meal. cold, jellied eggs... gross) and then I got back in the afternoon with the girls for a very brief visit because they really aren't supposed to be there.

Hopefully he can come home in a day or two, though he will still have to have serious treatments at home, at least having him here would make everyone feel so much better.

Comments

[Angee]

My heart breaks for you. I think I've mentioned before, probably last year when you went through this, that I have two cousins(siblings) have CF. One of them lost his fight in 2001 at 25. His sister is still fighting strong at 37. She is a fighter with two daughters that keep her going. Sounds like your husband is much the same! You are all in my thoughts and prayers!

[OmegaMom]

I'm sorry it's been so hard lately. Here's to them finding a good combo of the antibiotics and you being able to bring him home.

[3D]

Thinking of you and good to hear that there is improvement...

[Melissa]

Thinking of you and yours in NB...take care. This too shall pass.

[B Mama]

I totally understand - as I know you know. Hang in there during this tough time. We're rooting for all of you.

[Debberoo]

I'm so glad he is doing better. This is so all so hard for you both :(

[kris]

hope they find a good drug combo that works so he can come home asap. be kind to yourself! this is a tough time for everyone but especially you.

[Susan]

I am sending you all good vibes so that MD can come home ASAP.

[elaine]

Sending you good thoughts and energies from very far away.

[meg]

oh my- I'm so sorry - we'll keep your family in our thoughts and prayers.
Meg

[Tracie]

You guys have been in my thoughts and I am continuing to send good thoughts your way. You are amazing, taking care of your family as well as you do. Take care of yourself too, okay?