Carlyn's Update

First I want to say thank you a million times to our friends and family who have been so thoughtful praying, calling, messaging and thinking of our sweet girl through all of this.


This whole ordeal started back on March 3rd if you read the previous blog entry about her ER experience, you'll be filled in. Well basically she never got better, instead progressively got worse, WAY worse. I'll keep the details to a minimum so this doesn't become a novel....

The doctor at the ER prescribed antibiotics (she took those for 10 days) and during that time she began to wheeze/have chest congestion. She sounds as Brett would say "like a weed whacker" you can hear her breathing from across the room. I took Carlyn in for a repeat chest x-ray to check her progress which showed pneumonia in the area she had an infection in about two months ago (her lower right lung). Doctor prescribes some medications to be inhaled with her nebulizer machine we have at home (a steroid along with a bronchiodilator) an oral steroid (which is a potent little drug that made her sick to her stomach so she threw up a bunch) and a stronger antibiotic that targets different bacteria than the last. So by treating her around the clock (every 4 hours) with her breathing machine and oral drugs we thought we'd nailed it.
Instead Carlyn again was getting progressively worse. We did another chest x-ray, a lot of blood work (holding a 7 month old down while a lab tech attempts to find a vein to draw from was a long and painful process, I just sat and cried along with Carlyn).

Her doctor let us know that she is not happy with the fact that Carlyn's chest x-rays have areas that are not healing even from the first time she had pneumonia over two months ago. We had a long discussion about how it is very unusual for a child this young to have so many abnormal chest x-rays, infections and that it is alarming that she is not responding to normal protocols with the medication. The conversation ended with her doctor sending a referral to a specialist in Sac. to test Carlyn for cystic fibrosis. Yeah, I am sure you can imagine how Brett and I felt after hearing that.

This week, we are on our now 3rd prescribed antibiotic which is much stronger than the previous two and is meant to target resistant bacteria, Carlyn's pneumonia is exactly the same. We are able to keep her out of the hospital by doing her breathing treatments every 4 hours. Her oxygen levels are on the border of what they are okay with at this point so we are trying our best to keep them at this acceptable level and keep her home. Our doctor has sent another referral with some urgency to a pediatric respiratory specialist (not sure his/her actual tittle). We will hear from them hopefully tomorrow and hope to get into their office before the end of the week. She spiked another high fever and we came to find at her visit today that she also has and ear infection in each ear and she has conjunctivitis (pink eye) to top it all off.
Carlyn's regular pediatrician is a great doctor and she was almost teary-eyed today when we spoke about our shared frustrations about this sweet little girl. She is a mother herself and definitely understands how we must feel, having everyone tell you that they don't have an answer and that Carlyn has become the little guinea pig for treatment ideas over the past two and a half weeks. Her medical assistant gave me and Carlyn a hug and told us to call her if we need anything along with her Doctor's direct line so that I can reach her anytime I need to.

In a nutshell my beautiful daughter is a mess, we all feel helpless and are just praying that this new medication works and/or that the specialist has some answers on how to treat her in a way that actually works and get our healthy baby back soon.

Again, thank you for all your love!