I expected Ainsley to get better over the weekend but she didn't. She had a fever ranging from 101-103 off and on. Bouts of uncontrollable coughing here and there, sometimes with blood. Come Monday I called the pediatrician and couldn't get in until Tuesday at 4:00. After multiple calls to Pulmonary I decided to take her to the ER. The nurse didn't like that she still had a fever after so many days. Our home nurse listened to her lungs and she sounded okay. But the fever was persistent and since it had lowered it seemed she should have been perkier than she was. So we decided to go.
She had a huge coughing fit while I packed up our stuff. By the time we got to the ER she no longer had the energy to cough, even when I suctioned to get a trach culture sample (suctioning always triggers a cough). The bleeding stopped and her temp wasn't too high. I didn't really care though that she didn't look as sick because my goal was to get the testing we needed and get outta there!
They did lots of testing. Blood gas/CO2 was normal. The lung x-ray was normal (enough) so once again the feared pneumonia didn't exist. What it was: an ear infection, brought on by Human Metapneumovirus. She's now on anti-biotics so hopefully that will cover anything that the trach culture may come back growing.
As often happens when she gets sick she will cough so much that she starts bleeding. This time it was a little worse than in the past, and the color was like thin tomato soup. This picture was taken after we got home from the ER at midnight last night and doesn't include the bunch that was coughed into Steve's hand right before this picture. I kinda wish I'd taken pictures from the start to show them since they never saw the bleeding, but then I might be typing this from a hospital room.
Today she was less energetic than even yesterday. The secretions are getting thicker and colored. She seems just really tired. The coughing is exhausting. This is an illness that would seem just like a regular cold to anyone else. For her it's really just difficult because of the trach. Thankfully she has pretty good lungs otherwise she'd probably have pneumonia right now.
This is our suction unit and the secretions from today and you can see how red it still is. That should be clear like water. We use saline to flush the tubing hence the high volume.
I changed her trach today after bathing her (she was a stinky mess and I like to wash off the germs.) and was surprised to see the cannula coated with goo after just 3 days. She'd had a trach change just Friday. Sadly during the trach change she couldn't breathe and turned blue in seconds. This is a big change for her so either she's got a granuloma or the coughing has caused severe swelling. Maybe it's just temporary because of her currently increased respiratory rate and lower sats (about 94%). Unfortunately it means we are back to being in a life or death situation if the trach ever becomes accidentally dislodged (it happens). I've got some e-mails in to her doctors. We had an important ENT appointment scheduled for today and that had to be cancelled as well as therapy.
The good thing is that I brought my umbrella to the ER and so it didn't rain....Meaning my suitcase. Since I was packed with everything I would need if she was admitted they let us come home. That is where I'd rather be since there isn't really much else they can do for her. She just needs rest and time to recover. Anyone whose been in the hospital a lot knows that is easier to do at home than at the hospital. I love it when it works out that way.
Evie and Adrian also have coughs. I'm on the verge, but keeping it at bay other than a massive headache. I have faith that we'll survive the week. And then Steve will be home and life will get easier. I hope your week is better than mine will be.