Thursday, February 7, 2013

Share the Love for Quinn 2013: Some days are like that

I had a whole other post written this afternoon and then the wheels came off the wagon. Ryan is home sick. Sela woke up in the middle of her nap hysterical. Quinn came home complaining of an earache. 

And it went downhill from there.

When someone with CF gets sick, things get a little tricky. Quinn got sick January 26th. The nasty head cold, fever, cough that has been going around. When Quinn gets a cough, I contact Nurse Ben at the CF Clinic to touch base. Because of all the sticky mucus in Quinn's body--specifically his lungs--when bacteria get trapped then it is harder to get well. Infections can get bigger than just the common cold so riding things out sometimes doesn't work. 

When Quinn is sick we do three to four sessions of Chest Percussion Therapy (CPT). Quinn typically does two a day in conjunction with using a nebulizer two times a day. He is able to inhale one medication two times a day and another medication once a day. On a normal day this takes about two hours total. When he is sick, he might be doing therapies for another hour plus.

Nurse Ben and I planned to touch base at the end of that week and see how Quinn's cough was doing. It sounded like it was getting better. Not coughing as much at night. So we decided not to do an antibiotic. One challenge for folks with CF is having to take antibiotics and then having a resistance built up to those antibiotics so we try to avoid them as much as possible.

Quinn went back to school this past Monday. We went back to doing two nebulizing/CPT sessions a day. Quinn has been coughing this week and last night he was coughing a lot during the night. That told me something was up. 

I called and talked to Nurse Ben this morning and the general consensus was that he needed to be on antibiotics. Bummer. And, that we needed to be doing three to four therapy sessions a day. 

I went to get Quinn's medication at our local pharmacy/grocery store and they had no record of the prescription. Our CF clinic is AWESOME and I knew the prescription had been sent. I tried calling the clinic but couldn't get a hold of Nurse Ben. My second call probably wasn't super coherent and honestly I thought I was going to cry. 

I decided I would call the doctor on call at 6PM...we were taking everyone's temperatures and only Quinn has a slight fever. I wondered if Nurse Ben and I had a miscommunication and he sent it to a different pharmacy. Eureka! I found it. I went and got it and when I got home Quinn had already gone into his room and laid down in bed. I got him up and gave him is medication--this should help an ear infection too. He was agreeable to doing another session of CPT and then going to bed.

Today is February 7th. It has been almost two weeks since Quinn got sick. I am pretty bummed that we had to do the antibiotics and I was pretty frustrated with myself that I had stopped doing the extra therapies. 

I'm thankful that we are able to access medical care and medicine. That is a huge deal.

I had some pictures taken of Quinn doing his nebulizer and CPT but can't find my camera. I'll have to post those tomorrow. 

Finally, I got an email today about a little girl with CF in Portland. She passed away at Doernbecher Children Hospital in December. She was 11. There is a family missing their sweet girl tonight. Sometimes that information sends me into panic mode. Quinn's almost 7. I know that every person's journey is different but my heart feels overwhelmed. 

Some days are like that.

We are partnering with the Cystic Fibrosis Foundation Great Strides Campaign to raise money to fight this disease. We know there are many needs in the world right now but if you feel compelled to "Share the Love for Quinn" to donate $1 or one million dollars you can click on Team Win With Quinn and donate to our campaign to raise $3000.


Denee said...

I totally understand the feeling of thinking we escaped this cold without antibiotics, only to have to go on them after all. We had one like that in December...Henri had a sinus infection that wouldn't go away. And knowing when to go down to two therapies is tricky. In your own words: "You're doing a good job." You really are.

Heidi @ Blue Eyed Blessings said...

Meredith, I hope you know I think of you and your little family often and prayers are sent your way even more than that! You are a strong woman (although I know there are days you may not feel it) and Quinn is a courageous young man. I am so thankful for your true, honest, and real words to share with all of us a glimpse of the life that you have been given. I know it's not a road that you wanted to take, but it's a road God has given you and I only pray that you become stronger because of it. You, my friend are an inspiration to many...