Monday, January 23

Day 6: Results

We were anticipating the results of Madeline's bronch that was done last Thursday. We knew there wasn't alot of mucous in there but the doctor did have to suction out a section of mucous in the lower lobe of her lung. She mentioned that she didn't think it was pseudo in that lobe but reminded us that the results will tell all we needed to know.

The "final results" came in today. The results of Madeline's bronch read "negative". This means that the sampling they look out of Madeline's lungs and airways showed no pseudo growth or bacteria whatsoever. While we met with the doctor this morning, she reaffirmed that pseudo was in Madeline's throat area and not in her lungs. We are very thankful for this news since pseudo is a known bacteria to cause lung damage and it seems as though Madeline's lungs may have been untouched. We have even more hope that the two IV drugs she is getting infused into her 4 times a day will easily get rid of this bacteria in her throat area. The doctor mentioned that we have a lot better chance of getting rid of it there than we would if it was found in the lungs. I have my fingers crossed that after these 2 weeks of IV antibotics we could possibly be pseudo free! What a great feeling that would be....

As of now, Madeline is taking Prednisone (a steroid often used for asthma and cf patients) to treat inflammation in the lungs or airways. When Madeline's bronch was done the doctor found some inflammation so we will do a course of this drug along with her IVs, 4 nebulizer treatments a day, enzymes, vitamins, prilosec, zantac, and probiotics. Sometimes I wonder how her stomach can take all these drugs. She has her moments when she doesn't want to eat and you can surely tell that these high power antibiotics that are going through her IV lines are effecting her mood. But regardless, we are just thankful that we have a fighting chance at killing off this pseudo and it will be worth it in the end....(even as hard as it has been.)

We also got word today from Madeline's doctor that she will be able to finish her IV medications at home. We will be discharged from the hospital on Wednesday and sent home to meet a "home health nurse" who will train us on administering these drugs into her PICC line (iv line). It seems a little overwhelming but, I am hoping that I have good training before I leave the hospital. It's hard to believe that our family will meet once with the "home health nurse" and then be on our own for the next week at home to administer all Madeline IV antibiotics through her IV line. I am just thankful that we can be in the comfort of our home and, Madeline can feel more secure.

Once we finish our week of antibiotics at home, we will return to cf clinic for another culture to determine if the pseudo is indeed gone from Madeline's throat. And as hard as it will be to wait for those results, I know in my heart that we did whAT was best for HER regardless of those results. It will feel good to know that we did EVERYTHING possible to get rid of it....even if it doesn't work. I have high hopes....

And just like Madeline, another family is fighting the fight against this nasty beast Pseudo. The Topel Family has two cfers that recently cultured Pseudo and they are going through home inhaled antibiotics in the hopes of getting rid of it just as we had hopes for Madeline. Trinity and Cayden, two young cfers are doing their best to avoid what we are going through now. You can check out the Topel family's journey by clicking here. Tiffany, their mom, does an excellent job of explaining some of the treatment plans that most cfers who culture psuedo have to try at home first before resorting to IV antibotics to erradicate pseudo. (Just like we did....)

Let's hope that someday our cf children won't have to go through this to stay healthy. Some day there will be a "cure" for this disease. Please consider donating to the Cystic Fibrosis Foundation "Great Strides Walk" to help Madeline, Cayden, Trinity, and many others find a "cure".You can donate by clicking here. Thanks again for every ones thoughts and prayers. We have been moved by all the care and concern you have shown for Madeline. We thank you for being here for us when we need you the most.



More updates tomorrow as we prepare to go home with IV's!!!!!! :)

6 comments:

  1. That is FANTASTIC news!! So happy for you all :)
    Home ivs are scary at first but also so much easier and less stressful than being at the hospital.

    I hope it all goes well but if you need any advice or tips let me know :)

    Take care and woohoo! Xxx

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  2. Sharlene, Dave, and William HammondJanuary 24, 2012 at 6:51 AM

    Sandy, we are so, so happy to hear the news! I'm sure it will be overwhelming at times, and scary, too, but having her in her own home will be so comforting for her. And I've said it a million times before...as terrifying as this may be, you and Jack are so much stronger than you think. I admire the two of you more than you know. We love you and will continue to pray for you all! ~xoxo~

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  3. So glad that she can go home! I am sure that you'll all be able to relax more there! Going to miss you this weekend!

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  4. That is good news to hear about doing her I've mess at home. I was scared the first time but it just comes natural now.

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  5. I just love your blog and wanted to introduce myself. I am Tiffany Topel's mom and Nana to her wonderful four children. We have been praying for your family as you struggle to fight this disease. I find it amazing to me how God puts people in our lives to help us when we are struggling to carry our heavy loads. Know that the Lord walks with you every step. Madeline is a very lucky little girl to have you both as her parents.

    God bless,

    Phyllis

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  6. That's wonderful that you're getting to go home early! Yay to the end of Madeline's isolation. Playing at home will make you both feel better. I have no doubt that you'll take to your new 'skill set' with relative ease!

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