So in a lot of ways this was a perfect time to launch my blog since we’re going through a tough time and we can have everyone’s support. However, in a lot of ways it was the worst time because Anna got the sickest she has ever been right after we launched. I haven’t had any time to post anything! So here’s whats been going on with us:
About 2 weeks ago Anna started with a little bit of a runny nose, but nothing serious. Last Friday I felt like she was coughing a little more than usual, so I called her Hopkins doctors because I didn’t want to be stuck over the weekend with her really sick with no meds. We were told to start doing her nebulizer treatments again every 4 hours and see how she was doing. They also called in an antibiotic in case we needed it but they said to wait and just see how things went over the weekend. She was doing better with just the nebulizer Friday and Saturday and we headed to York to go to an engagement party for a few hours Saturday night while she had fun playing with her Mimi. The Anxious Mom in me even left in the middle to go check on her and get her to sleep (my Mom is the best Mom in the world but Anna can be quite the diva) I kind of feel bad leaving her with anyone!
I always used to say that Jack was my sidekick when he was little but roles are reversed and I am definitely Anna’s sidekick now. We call her the Queen Bee. I had plans to get Anna on a routine sleep and nursing schedule and I’d pump and use bottles sometimes to get her acclimated and get her in her own bed early on and so on and so on. Well, Anna never used a bottle (but she uses a sippy cup now!) and she runs the show. But I can say she’s pretty good about bedtime, so 1 out of 100 almost resembles the plan I had in my mind before she was born. What’s that phrase, we make plans and God laughs?
Well anyway, she slept well Saturday night but out of nowhere I noticed a huge change in her on Sunday morning. As soon as she woke up her breathing sounded different, more labored. We kept with the same routine but I knew we needed to get her meds that night so I checked the CVS hours and they closed at 6. We needed to leave York at 4:45 to get back in time. While Alex took a nap I got everything ready and packed and in the car so we could leave right on time. We did, but when we pulled up to the pharmacy it said it closed at 5! Apparently 6 meant the store hours and the pharmacy closed an hour earlier.
I was SO upset with myself. I really had a breakdown, it was just one of those moments where it was too much. I kept thinking about the bacteria just growing in her lungs for 15 more hours until the pharmacy opened. It was horrible, but eventually I just had to talk myself out of it because things happen and even more importantly there was NOTHING I could do about it, so I had to let it go. I really felt like a failure and I’m actually embarrassed typing it because I feel like a horrible parent but this is supposed to be real life and in real life this is the kind of stuff that happens. Especially when you have a mind packed full of a million fears and to-do’s there are bound to be a few mistakes.
So, Monday morning I started her on Bactrim (her usual antibiotic that she responds well to) to treat some staph that showed up on her last culture. It’s a common bacteria that doesn’t cause her lung problems but when she gets sick it can flare up and cause an infection.
On Monday morning I took both Anna and Jack to the doctor. Jack had been sick a few weeks earlier but had a pretty rough cough that was lingering so I wanted to get him checked. Our Hopkins doctors wanted Anna to have her lungs listened to. The doctor said Anna sounded clear but Jack needed an antibiotic because he was really congested.
We gave our Hopkins doctor the report but I said that even though the doctor couldn’t hear a wheeze I felt like she was wheezing, she really sounded different to me. Hopkins trusted my opinion and decided to start her back on the steroids she had been on before (Prednisone). Over the next few days, Jack got better but Anna got worse. She just kept coughing more and more, she seemed sicker. When I told Hopkins what was going on Wednesday they decided they needed to see her.
I was glad to have them check her but an unexpected 4 hour drive isn’t ideal. Luckily, I had no time to dread it and we left an hour after the phone call. They listened to Anna and said she did in fact have a wheeze and they decided to taper the steroids so that she was on them longer, change her to a stronger antibiotic called Omnicef, and to re-culture her to make sure she hadn’t picked up any new bacteria that they should be treating differently.
Thursday and Friday I started to get more and more concerned about Anna because her breathing really sounded labored and fast. I could hear and see every breath she would take. I called Hopkins on Thursday and they explained to me that a lot of the meds are going to make her cough because she needs to clear out her lungs, so coughing is a good thing, and a loose cough is a really good thing. But they did tell me to watch for signs that she’s really having trouble like seeing the bottom of her neck suck in when she breathes or seeing her chest pull in, or if she’s pale and lethargic.
Up until then she had been acting normal, playful and happy despite the cough so I felt a little better. Friday it was still going on and I thought she looked pale and she was sleeping a lot more (although only when I was holding her) so I thought it was best to take her back to the pediatrician to just make sure we were doing everything right and it wasn’t a dangerous situation. It was just weird to have to say “OK this is good, its good that she sounds like this because she’s clearing out her lungs”. If Jack sounded like that when he was a baby I would have absolutely been running into the ER saying that something is wrong, he can’t breathe. It’s just hard to realize that I guess this is what happens and what comes with CF.
We went to the pediatrician Friday at 5. She said her lungs sounded worse than Monday, which was concerning because the meds should have been working. She decided to swab her nose and run a test. A few minutes later she confirmed that Anna has RSV.
RSV is a common virus that presents like a cold in adults and older children, but can be dangerous in young children, even more so in children with cystic fibrosis because it affects the lungs. We called Hopkins yesterday and for now she is being treated at home but we need to check back in Monday.
It’s a little frustrating because there’s a shot to prevent RSV in high risk babies, but we didn’t get it this year. I guess they didn’t think it was necessary. They did say that next year they’ll put us on the list, but knowing this could have possibly been avoided is upsetting. I just have to think there must be a reason they didn’t give it to us this year, and again there isn’t anything we can do about it now. Hospitalization is sounding like much more of a possibility because hypertonic saline or IV antibiotics are only administered in an inpatient setting.
The good news is that she seems a little bit better today, her coloring has improved and she’s not so pale. We are very hopeful that we can get her healthy here at home. But the plan is to call Hopkins tomorrow morning, give them an update, and go from there.
We appreciate everyone’s love and support and we’ll keep you updated as we get through this bad patch. Until then, we’re looking forward to cold and flu season being over SOON!