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Thursday, June 3, 2010

The inevitable

The inevitable words in a CFer’s life have been uttered: possible hospital stay.

Let me start at the beginning. Ben’s TOBI treatments have been going horrible. Half way through he starts screaming and fighting it. And by fighting, I mean going red in the face, sputtering, gasping for breath. Not an easy thing for a momma to see. Our treatments are only 7 minutes long so you’d think that he’d be able to make it through but sitting still for 7 minutes to a 15-month-old is not ideal. All three of us end up in tears by the time it’s over. Not fun.

When we first started Ben’s treatments, Ryan and I agreed that we would never force them on him. Meaning, we would never hold him down to finish them. I know that some CF mom’s wouldn’t agree, treatments need to be done no matter what, but Ryan and I feel differently. I believe that through trial and error, positive reinforcement and finding ways to get him to sit, we will ensure that he will do his treatments willingly. I taught kindergarten and I know that positive reinforcement goes far.

Yes, treatments are extremely important and will be a part of Ben’s life forever until there’s a cure. However, Ryan and I want to make sure that treatments don’t turn into torture. Some whining, fussy and twisting is okay but I refuse to hold Ben down to get them done. Perhaps we will feel differently in the future but for now this is the route we are taking.

I called UCSF yesterday to talk to them about Ben itching his nose. I am trying to figure out if it’s caused by the eFlow neb or maybe allergies. While we were talking, she asked me how treatments are going. I teared up and said how hard they have been going and what we should do. After talking to Dr. N our NP suggest we take a break for a bit. We are 8 weeks into our 12 week round of TOBI and they feel that a break is okay to take.

So, when we leave for Hawaii we will be leaving our eflow/TOBI treatments behind. A HUGE RELIEF. One; I don’t have to haul all that stuff over there. Two; I don’t have to make sure we keep our TOBI meds refrigerated during the flight. Three; I won’t have to deal with having distilled water (the only thing we can clean it with). We will still be taking our vest and I will be bringing our Xopenex inhaler to give him at the beginning of his vesting session.

I think that a week off will give him some relief and will hopefully allow us to easily jump back into our TOBI treatments when we get back. If possible we will continue them until our 12 weeks are up. If not, we will reculture him then go from there. If he does culture pseudomonas again we may need to consider a hospital stay to do TOBI by IV’s. A 10 to 14 hospital stay in San Francisco. Even if we get through our 12 weeks, if he is still culturing pseudo, a hospital stay is probably in order.

I think that after I heard those words it really hit me. My son has an incurable, life-shortening disease. Ryan too. Those words made everything hit me like a ton of bricks. On one hand, I think a hospital stay would be good. Get some good antibiotics in him and really get rid of this pseudomonas. But on the other hand it’s a long time to be away from Ryan, and to be in the hospital. During the two and a half weeks he was hospital when he was born was one of the hardest times of my life. He was recovering from his bowel surgery and was on antibiotics because he cultured staph while there (which I blame on the hospital because he wasn’t in my care). Ryan had to still work and I was recovering from my c-section.

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I have to admit,  after I got off the phone with our clinic nurse, I scooped up Ben, put him into the car, drove him to Toys’r’us, and promptly bought him the Tonka Truck he had been eyeing the last couple times we had been there to play with the trains. This was a guilt gift. I felt guilty. Guilty that I had (unknowingly) passed on this disease, guilt that I couldn’t fix it and guilt that I  hadn’t done more to protect him from pseudomonas. I realize that I can’t do this every time, something comes up but for the time being, it made me feel better. A big smile on Ben’s face, always makes me feel better.

For now, I’m going to concentrate on the positive. By this time next week, I’ll have a drink in my hand and my toes in the sand. I can not wait to take Ben to the beach. I think he’s going to love it. I have also started getting into the habit of having him do his vest as soon as he gets up. Normally, he would eat breakfast first, wait an hour, then go into our half hour vesting. But, I have noticed that it can take us hours just to get out of the house in the mornings. So, doing his vest right away has really helped. I think it’s also good for him to get into a routine.

Only time will tell, Ryan and I are learning as we go. No one gives you a manual on how to raise children especially ones with special needs. We are trying our best to raise a happy, healthy little boy!


  1. I'm sorry to hear this Marguax :(
    I'm glad you all can go to Hawaii without all the equipment and worry it brings with it! I'll be praying little man doesn't culture pseudomonas. If you guys are ever in SF for a hospital stay at any time (which I hope won't ever have to happen) just know that I work in SF and am nearby if you ever need anything :)

  2. Thanks Kaysie! If we do end up there, we'd love to have you come visit us!

  3. You are amazing, sweet friend. Have a wonderful time in Hawaii!

  4. Keeping your family in my prayers :) Hope you all have a wonderful and relaxing trip to Hawaii!!

  5. I am in tears after reading this Margaux. I cannot imagine what it feels like for you and Ryan to have to battle this disease on a daily basis. But, you are amazing. You are such a great mom, and you handle your job so well! You are inspiration to me, and I just wish there was something I could do to reward you for all the hard work you do. Keep up the good work, I'm sure that your strength and faith will be rewarded in time! Enjoy your trip!

  6. OMG I buy Radek "guilt" gifts ALL the time..I'm so glad I'm not the only one that does this!!!! I keep saying I'm gonna stop, but then I always end up feeling bad for him and buying him something...If it's not me buying him something for feeling guilty it's me buying him something for an accomplishment. When he started swallowing his enzymes yesterday I bought him like 3 different toys!!! LOL

  7. You three are amazing and I hope you get to enjoy Hawaii more than you even anticipate! It definitely sounds like a good vacation is needed. And it does seem like you are an amazing mother! Good job!

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