Wednesday, September 21, 2011

Update from the Hole: Day 22

Ever wonder where Mandi sleeps while we're here? Answer within!!

Pontificated by Unknown
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Jodi's avatar

Jodi · 706 weeks ago

Glad your #'s are trending back up. You don't look as sleepy or "VancoE" than you had early on! GREAT! GREAT! GREAT!

Mandi, how about you pay us a visit in one of Ronnie's update?

Hope you BOTH are home in your own bed by weeks end! Before you know it, you, Ronnie, will be sleeping on the cot and Mandi in the very uncomfortable hospital bed (or at least I think they are).

Take care!
1 reply · active 706 weeks ago
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RunSickboyRun 96p · 706 weeks ago

Yeah, I'm definitely on the up and up! Mandi isn't a big video blog doer, but maybe I can convince her to do another one one of these days :)

Can't wait to be in our own bed!
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Lisa Shively · 706 weeks ago

Hi Ronnie,
I am amazed at how big your room is and ALL the stuff you bring. I thought I took a lot of stuff for my stays, but you sir have won the medal. A while back you had made a comment about what you were going to do when peanut arrives. From my experience before my son was mobile he stayed with me as long as someone else was there to do the majority of the caring. As he got older he became bored so he did not stay. Then about age 3 he did over nights, the staff loved having him there because they are so used to older patients and it was refreshing to see such innocence. He was allowed to go on the roof and check out the helicopter, we played soccer in the tunnels, (not sure that was allowed, but no one said anything to us), of coarse the vending machines were and still are the high light of his visits. The hospital you stay at seems extremely accommodating you should have no problem with future visits and stays. I know you two look forward to being home, sounds like it is going to be very soon.
Lisa
1 reply · active 706 weeks ago
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RunSickboyRun 96p · 706 weeks ago

I've definitely been adding stuff to what I bring over the years. It always seems like there is one more “convenience” that I can add. As far as what we'll do when peanut gets here, it's still up in the air. The nice thing about coming to a hospital in Tucson is that we have plenty of family here with extra bedrooms. In fact, my mom has been feverishly working on getting a guest room ready just for us! We also know another family who is in the exact same situation as us that come to this hospital with a young child and they do just fine. The pack and play fits in the bathroom for naptime :) You're totally right though, this hospital does almost everything it can to make the chronic illness patients feel right at home. Thanks for the comment!
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sharon · 706 weeks ago

Hi,
It's great that you are feeling better. Thanks for all that you do for all of us who have cf too. I am a soon to be 43 year old or young as I'd rather say wcf. I have a little boy who is 9 wocf who keeps me going and laughing, but I do have to say, I sometimes thank God when he finally falls asleep at night lol.
I pray that everything goes well when it is time for your little ones arrival. You and Mandi are going to be wonderful parents, your child is very blessed.
I also have to say that you are one very lucky guy. Mandi is a gem, she certainly loves you a whole lot. To spend nights in the hospital with you and to sleep on a little cot when she is pregnant is a testament of her love for you. This is coming from someone who was pregnant, been there, done that.
Hope you continue to get better. You and your family are in my prayers. Keep God close in your heart and
take care.
Sharon
1 reply · active 706 weeks ago
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RunSickboyRun 96p · 706 weeks ago

I couldn't agree with you more, I am one lucky man! Mandi is a very tough girl and she not only tells me, but she shows me, that her love for our family runs deep.

Happy to hear that your 9-year-old is keeping you active and laughing! Thank you so much for taking the time to write me this wonderful comment :)
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Megan · 706 weeks ago

Wow. I don't know how you do this! 10 minutes in a hospital is too long for Aidan. We are currently doing IVs again at home. This is his tenth time on home IVs and as you know, he has such a hard time. I know you are so positive now but I have to think there were times when CF scared you or brought you down as a kid? Aidan is so tough but he just truly hates being different and sick all the time. I just thought he would accept it by now and be more at peace but he seems even angrier now. Tonight he just sobbed that he felt like 'such a freak' and hated his life. I just dont know what else to do. I think I want to take the port out; it just seems to cause SO much anxiety. The vest, nebs, sinus rinses and pills are a cake walk compared to this! I want those days back....The therapist he sees says that we need to let him 'hate CF' and what he goes through and validate it for him. So we try but at the same time, we have to focus on the positive. It's been a difficult balance due to the constant sickness. I just wish I had a magic mirror to see that in 20 years....he has come through it all with flying colors and has an attitude like you! Glad you're getting better!
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RunSickboyRun 96p · 706 weeks ago

To be completely honest with you, I don't remember ever feeling different than anyone else. As a kid, I was sick as well with hospital stays, home IVs, medications, etc. but for whatever reason I was able to compartmentalize that part of my life apart from the non-CF centric life. Were there times that I didn't like feeling sick? Of course! I never liked feeling sick then, just as I never like feeling sick now. And maybe it just comes down to pain? It sounds like Aidan it is in a lot of pain much of the time and as for me the only pain I really ever felt was IV and needle sticks. Sure, I had the crazy CF stomachaches (sometimes daily), but even back then I remember telling myself that they would “go away soon”.

Maybe Aidan just can't see an end to any of this and it freaks him out. I'm sure you guys are doing whatever it takes to be there for them and to try to help him through all of this, and really, that is all you can do. And I know I've told you this before, but I still think one of the best things my mom ever did (for me) was show me strength, determination, and a “grab the bull by the horns” attitude. Little did I know that she would cry herself to sleep many nights.

There is no doubt that my attitude towards CF was shaped by seeing my mom's attitude toward CF. I'm not saying that you don't do this, just simply saying what I thought was beneficial for me as a kid. Aidan is always in my prayers and I truly do hope that the road gets a little less painful and easier for him.
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megan · 706 weeks ago

thanks! we are really positive in front of him and let him do everything as far as normal life stuff. he is an overachiever in everything! the weird part is that in school, he is a total charmer. they think he is the most well adjusted kid ever. he's the youngest in his grade but you would never know because he's so social and outgoing. today his teacher came to tutor and he had no problem talking all about his IVs and port flushes. so i can't figure him out, maybe he plays it up for us? but i dont even react anymore. the port flushes used to have me in tears but now we hold him down and i have learned to stay nonchalant. so i'm really trying but yeah...there are nights i cry! i do think a lot of it is the pain...he lives on Aleeve except when he has to stop a week before and after surgery...he has a bad stomach too but has just learned to live with that...thanks for the advice! i
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RunSickboyRun 96p · 706 weeks ago

I wouldn't doubt for a second that he “plays it up” to his parents as I can confidently say most kids do regardless of CF. It's good to hear that his teachers believe he is well-adjusted, social and outgoing. To me, that speaks volumes. I hope there comes a day real soon that Aidan's sinuses don't give him so much trouble and pain! Keep up the good work mama, you're doing great :)

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