Zoe's Emergency Room Visit

After nine weeks of Zoe having a runny nose, coughing, not sleeping well, and seeing the pediatrician biweekly to check on her lungs, Zoe started running a high fever Sunday night. By Monday morning, Zoe was refusing to eat and insisted on being held constantly (not like Zoe at all). Her temperature was about 39.5 (that's 103.1 for the Americans reading the blog) and did not go down much with the advil and tylenol. So, back to the pediatrician's we went. The doctor guessed that Zoe either had a sinus infection or pneumonia. Her lungs were no longer clear sounding. She prescribed antibiotics and told us to follow up with her if she still had a fever in 48 hours. On Wednesday, Zoe still had a fever, still refused to eat, and was not acting like herself. It got a little complicated since we were at the hospital seeing orthopaedics and we did not want to have to go to the pediatrician's and then return to the hospital for a chest xray. So, we called the pediatrician and got them to fax through a requisition for the x-ray. That got a bit muddled because the secretary was too busy hanging stockings in the waiting room to bother checking the fax machine but luckily the orthopaedic doctor just added a chest x-ray to the requisition he made for her hip xray. In the end the pediatrician told us to go the emergency room where we found out that Zoe does have pneumonia in her left lower lobe. The best course of action would be IV antibiotics since Zoe was not responding to oral meds. However, Zoe is an extremely hard stick and they could not get in an IV. Rather than try a bunch of times and have the IV blow in the next day, they decided to give her IM (intra muscular) antibiotics, prescribe strong oral meds, and have us go back to the pediatrician's on Friday to have her lungs listened to again. They were able to get a blood culture so if the infection does not respond to the drugs they will know exactly what is growing in her lungs and the best meds to fight it.
Gavin took off of work today and I will take off tomorrow. We were relieved that her fever seemed to be going away but by this afternoon she was running a fever again. We do not want to go back to the hospital for IV meds since this would mean Zoe would require a central line in order to get the meds since she is such a hard stick. Since we know other 1P36 kids who have constant lung infections we are holding our breath and hoping that this is not the start of a bunch of infections. The doctor in the emergency room brought up the fact that the pneumonia could be partly caused by or made worse by Zoe's choking on her food. Zoe could be aspirating her food into her lungs. Since Zoe has never had pneumonia before, this is unlikely. However, if Zoe continues to get infections then we will look into this.
It is heart breaking hearing Zoe cough and I can't stand forcing the meds into her mouth. She has gotten very clever and has figured out how to throw up right after you give the med so we have figured out ways to distract her.
Going through all of this has made me appreciate a few things in my life. Number one is how amazing Zoe truly is. She must be in so much pain right now but she is still such a trooper. She was upset with the IV and blood draw attempts but she did so well with it all. On the way home (we ended up having to take the subway and bus home at midnight and we laughed since it was in middle of a snowstorm- I am not sure the doctors would approve of it but we had no choice since we did not have her car seat at the hospital to take a taxi home) Zoe just played quietly and fell asleep. She really is such an easygoing child. We worry that doctors overlook her pain since she does seem to have such a high pain threshold. But since we know her so well, we can advocate for her when know she is not herself.
One of the other things it made me appreciate was Zoe's communication skills. This was the first time that Zoe was in distress and could sign what she wanted/needed. She kept signing "mommy more" or "daddy more" when she wanted us to just snuggle her. She also signs a very firm "no" and "all done" when we try to feed her right now. It is so much easier now that she can tell us what she wants. We can see how much less frustrated she gets since she can communicate her needs.
Another thing I appreciated last night (and always appreciate) is the great partnership I have with Gavin. He and I were always on the same page. We advocate for Zoe in the same way and we both feel comfortable and confident in questioning the doctors. Having children puts a strain on any relationship. Having a child with special needs puts even more strain because you are more sleep deprived, worried about different things, and for us there is a huge loss in income since we are unable to work full time. On average, it takes about 20 hours a week to coordinate Zoe's appointments and take her to the doctors. That does not include the extra time it takes to feed her or do her therapy. And that does not include when she is sick and it takes much longer. 20 hours is a part time job! No wonder we hardly ever have time to spend alone as a couple! Even though Gavin and I are exhausted right now and very worried about Zoe, we are always still on the same page. I just can't imagine if I didn't have someone by my side going through all of this.
Anyway, I have to take Zoe back to the doctor tomorrow and hopefully all is well. As soon as this cough clears, I look forward to getting some sleep. It is incredibly hard to sleep when your child is struggling to breathe. Since Zoe does not have the muscle tone of a typical 21 month old, she is not able to have productive coughs which makes it harder for her to clear her throat and initiate breathing after a coughing fit.
I hope she gets her appetite back soon. Last time she was measured she had gained 6 ounces in the past three months. Not bad since she has been sick for the past two months. More importantly, we have to be sure she is staying hydrated.