Wee Craig is in

[dyzaman]

I was so hoping that it would be such a long time before I had to tell you this, and me not posting for such a long time now, but Craig is in the hospital for 2 weeks of IVs. This is his first admission, hopefully the last for a while.
Last month the docs started him on hypertonic saline as he was showing some build up in his upper broncial tubes, this in itselfs has always shown up as such. Anyway the second sputum sample came back and it has shown up with Pusedenomas A and pusedenomas purtida (sp?). This has been such a shock to us that we have been on auto pilot for about a week. On monday he started a 3 month course of cipro along with a 6 month colomycin nebulised, (cant remeber if these meds are called the same in the states) I should say that he was showing no symptoms, but Friday morning he had a cough so he was admitted by the afternoon. Liz is staying in with him, he is only 8 years old, I'll give her a rest after a few days, and then I'll stay with him. This is such a learning curve for us both, and for Craig. He's fighting everyone in the hospital on his treatments, especially anything that involves needles.

I just cant put how Liz and I are feeling right now, all I feel is a dam behind my eyes waiting to burst.

Craig

 

[Ratatosk]

Ugh! In my thoughts. Ds is terrible about needles as well and no amount of bribery works. Hopefully the drugs will get the bugs knocked out and he'll be back home soon.

 

[TreasureGoddess]

Hang in there Craig. It does get better. It's so hard to see your child suffering and having to go through treatments, etc in the hospital. When my son was around Craig's age he started asking questions of those ready to poke him......"have you done this before?" "Have you given shots to babies, children, old people? If they don't get things done on the first poke, you (and your child) have the right to ask for a supervisor to administer whatever meds you're working with. My son STILL asks every person coming in to stick him with a needle the above and more. It seems to give him a bit more control over the situation and he often asks questions like "how long will this take?" "can you count down before the stick?" etc.

Also, if you end up having picc lines put in (for longer term iv meds) you can ask to have your child given medicine to help them relax before the procedure or even laughing gas during the poke so they totally don't care. Ask if there's a child life specialist available, they are there to help reduce stress on your child, to help them learn relaxation techniques or distract them with cool video games, etc.

As your child gets done with these meds and hopefully leaves the hospital feeling MUCH BETTER than he went in, talk about that in a couple of weeks. We talk about how it was no fun to go through those days/weeks in the hospital, but how it was worth it to be feeling so much better, etc.

It does get better. Rotating with your wife will really help each of you have time at the hospital and time away. Good luck!!

 

[Imogene]

Craig,
I just saw this and I'm so sorry to hear how you are all struggling know there are thoughts and prayers heading your way to Scotland from cf.com here in NJ.

imogene