April 10, 2015

a new plan

We never did make it to our follow-up with the pediatrician last Thursday.  Wednesday morning around 3:45am I woke up to go the bathroom.  Shortly after while I was trying to fall back asleep, I noticed Elsie was moving around and coughing.  After about 15 minutes I went in and gave her a drink.  I left her for another 5 or so, and Chris suggested I give her some albuterol.  By this point it was 4:30am, and after the treatment she fell asleep in like 10 minutes.

Elsie woke up again around 7:15am, with a bit of a cough.  When I went in to her room I knew I wouldn't be dropping her off at MDO.  Her breathing was incredibly rapid and she wasn't able to talk to me without coughing.  I gave her another breathing treatment.  It didn't really help.  Chris told me to get her to urgent care after I dropped Ryann off at school, so I got to work getting us all ready to get out the door.  By 8:10am when I was getting us in the car, Elsie was sounding much worse.  She started coughing on the way to school and I could hear her breathing very heavily.  I definitely got a sense of urgency, and called the school to ask someone to come out and meet Ryann.  Thank goodness for that.

As I pulled out and headed toward the doctor the coughing just got worse and worse.  Elsie didn't have a moment to catch her breath.  I texted Chris (at a red light for the record) and he said if she really sounded awful just go straight to the ER.  That was all the push I needed, plus we were closer to the ER than the pedi and I wanted to get her help right then and there.

Honestly this was the first time I truly thought my child might stop breathing.  I wasn't sure we could make it before something really bad happened.  I was terrified.  She continued to cough continuously as we checked in with the security guard.  I fumbled for my liscense.  It took me forever to find the damn thing.  I was almost in tears at this point.  The nurse(?) at the desk quickly waved us over, got our information and told us it would only be a minute.  She leaned back in her chair and said someone needed to take us to triage, NOW.  I was so thankful that they were acting quickly, but again, it is even more scary when the nurses and doctors are worried.

these were supposed to be our pouty faces

I think I texted Chris at 8:50am to let him know we were at the ER, and by 9am we were in a room with a doctor.  I am so incredibly grateful to the doctor's and nurses at Children's Mercy.  They took such good care of us.  Elsie immediately wanted to know where her iPad was, which I hadn't grabbed.  Without saying a word the nurse called the child life representative and in a matter of minutes she had an iPad.  They were doing anything they could to keep her happy.

When all was said and done in the ER, I think Elsie had 10+ puffs of albuterol, a dose of prednisolone, and did an hour long breathing treatment.  The breathing treatment was hard to watch.  Her body was being pounded by the steroids, and while she did relatively good, she was getting so shaky and pulling at her ears, scratching at her face, it was making her crazy.  I hated it.  But it helped.  Her breathing improved.  When they first started the treatment she sounded like a full on squeak toy, and by the end of it wheeze was gone.  But she couldn't last more than two hours without some sort of breathing treatment, and her oxygen levels didn't want to come above 91-92%.  So we were admitted.

The rest of the afternoon and in to the evening was filled with more breathing treatments, more prednisolone, a whole lot of movies and snacks, and a bit of a nap.


Chris had to leave shortly after we were admitted to pick up Ryann from school and take her to dance, but he came back around 8:30 when some friends were able to come hang out with Ry.  He brought us some cheese and crackers, and some Ben and Jerry's :).  After he left again I attempted to get Elsie to go to bed, but she just wasn't having it.  Thankfully she wasn't against sleeping in the crib this time, but she just kept talking to me and rolling around and pulling her monitor off.  All that fun stuff.  Finally around 11:30pm I got her calmed down, and rubbed her back until she fell asleep.  In a matter of minutes E's oxygen level dropped to the mid 80's.  The nurse came in and tried to put a nasal cannula on her, but Elsie was absolutely NOT having it, at all.  She just wouldn't let her put the thing in her nose.  I can't say I could really blame her.

We settled on blow by oxygen.  I got her back to sleep and we set up the tube next to her face.  All seemed to be going well so I tried to get some sleep myself.  But 30 minutes later the alarms were going off and the nurse was back in our room.  Elsie had rolled over, naturally.  The nurse repositioned the tube and her numbers came back up.  I sat back down, but two minutes later she flipped over and the alarms went off again.  I spent the next 45 minutes or so playing move the oxygen tube, but at that point it wasn't doing the job to keep her levels above 90%.  The nurse suggested maybe I hold her in the recliner so that we could keep everything positioned better.  That worked for a little bit, but by 3am even that couldn't keep her levels up.  Our last ditch effort was an oxygen mask.  Why E was less opposed to that than the nasal cannula, I'm not sure, but she let me hold it on her face.  Which I did for the next 3-4 hours.  I dozed on and off a bit, but if I wasn't holding the mask it slipped and her oxygen levels dropped.

Shortly after 6am I was fidgety and uncomfortable, and I think Elsie felt the same way.  She was up by 6:30am.  She pulled the oxygen mask off, but her numbers were still only in the upper 80's, so I convinced her to keep it on while she watched a movie.  Cars for the second time I believe.  After her next breathing treatment her levels stayed in the 91-92% range, so we were able to keep the mask off and get her some toys to play with.  Poor kid was getting antsy with really maybe a five foot radius of space to hang out in.


Slowly but surely, Elsie began to improve more and more throughout the day.  My mom came in to town, so Christopher was able to come hang out with us a bit.  During which time I got to go to an asthma class.  That was certainly eye opening.  Obviously I've heard of asthma.  But my impression was more on the sometimes the kids have a tough time breathing well.  They can't do quite as well in sports because they run out of breath.  But after the last month, and learning more and more about asthma, it was terrifying.  I left the class more knowledgable and confident in what we were doing, but also so incredibly scared that everything in our home, in our environment, etc, was going to cause Elsie to have another flare up or attack.

Naturally the doctor made her rounds while I was in the class.  Which reminds me, crazy thing about the doctor?  She had been my pediatrician.  The day before I thought she looked so familiar, so I texted her name to my mom.  Sure enough.  The world can be such a small crazy place.  Anyway, while she was pleased with how much Elsie was improving over the course of the morning (her oxygen level was now between 93-95%), she really didn't feel comfortable sending her home until we saw what her levels would do while she napped, and also that she could make it 4+ hours without needing any albuterol.  It took a lot of coaxing, rocking, and hair rubbing, but eventually I conned Elsie into falling asleep on me.  It ended up being quite the epic 3+ hour super sweaty nap.  My mom stopped by for a bit and we tried to wake Elsie because I was so uncomfortable, but she had zero interest in waking up.


Her oxygen level slowly started dropping while she was sleeping, but for the most part it stayed around 92%.  Occasionally it would hit 90, but she never set off the alarms.  Woot woot!  When she woke up you could tell she was feeling much much better, and was very anxious to play and move and do anything but sit and watch TV.  A volunteer brought her a mat and some new toys and she was a happy camper.


We hung around for a while longer.  The doctor made her evening rounds and told us if Elsie could make it to 6pm without needing a breathing treatment she would sign the discharge papers.  Score!  Elsie did great and after her 6pm breathing treatment we got to work getting ready to go.  All of the steroids were really starting to add up in her little body though, and my oh my she was quite the character.  Somehow while we were in the hospital she perfected her sass and grumpy face.  She also became a little less compliant to what everyone was wanting her to do, but again.  I just can't really blame her.  She's two.


That night at home was kind of scary and stressful.  Elsie was getting worked up and running around which in turn made her out of breath.  Part of me was wishing we had just stayed in the hospital one more night.  But we survived.

This week we met with an asthma allergist.  She went over the allergy testing the pediatrician had ordered and confirmed that Elsie does have a cat and dog allergy, but pollens, trees, dust, mold, etc, were all negative.  That was good to hear.  She also gave us a new asthma action plan, which includes a daily inhaled steroid.  It should keep Elsie from needing albuterol so much, and hopefully almost eliminate any flare ups.  We've made it three days without the rescue inhaler without any wheezing.  If we get through another three days or so I'll feel so much better.  We've had our carpets and air ducts cleaned.  My fingers are crossed that we've gotten enough pet dander out of our house to allow her lungs to heal.

Thank you so much to everyone who has thought of Elsie or prayed for her and our family in the last month.  I truly appreciate the support, and am so thankful for this little community I'm a part of via blogging and instagram.  Life and parenting can be so scary, but it is less so when you feel like we're all in it together.  I'm sure this isn't the end of our asthma journey, but hopefully with the new plan in place we can make it quite a while without issue.


Liz Runningmomma said...

Poor Elsie and poor momma! I can't imagine being pregnant and going through all that, especially the 3 hour nap! You are such a good mom!

Megan said...

I don't normally comment on blogs, but this really hit home for me. We experienced almost this exact same thing back in September with my 18 month old (now 25 months). We had been to the ER so many times for breathing issues, that when I went in, I really just thought it would be another one of those times where we'd be there for a few hours and then get to go home. But nope. :( My son had to be on constant albuterol and oxygen. We were admitted to the PICU and were there for two days before being moved to the regular Pediatrics ward where we were there for another day. During our stay, he was officially diagnosed with asthma and we now have a control inhaler that he takes morning and night (Qvar). I'm happy to say that since starting the control inhaler and having an asthma action plan, we haven't been back to the ER! And this has been a brutal winter for illnesses (which is when his asthma usually kicks up), so I'm thrilled! I hope the same will be true for Elsie!