Sunday, December 18, 2011

It's been an incredibly challenging 24 hours for all three of us. For Stephen, his challenges have been more monumental than ours; in that he had to work incredibly hard last night just to be able to breathe. For us, it was challenging to watch him struggle and get sicker and sicker with each minute that ticked by. It was a very scary night for us.

As I mentioned before, this all started out as a little cough on Wednesday while we were still in the hospital. Thursday, it got a little worse, and he seemed as if he wasn't feeling very good. Again on Friday, he was worse, so I took him to the pediatrician. The doctor said it was a viral sinus infection and that there wasn't anything they could give him. Saturday he continued to get sicker and was so inconsolable and his breathing seemed to be getting faster and more shallow, so we decided to take him to the ER (it started off as a drive, hoping that it would put him to sleep). By the time we got here, he was clearly in distress; both respiratory-wise and just all together.

His RSV swab came back negative, but the chest X-ray clearly showed that a portion (the middle lobe) of his right lung had collapsed leading the doctors to believe he has pneumonia. Both his heart and respiratory rates were elevated and his oxygenation was in the low 90s so they started some nebulizer treatments. Almost instantly you could see an improvement in his temperament, but you could still see in his chest and abdomen that he was struggling. Apparently, the treatments give the feeling of an "oxygen high." He received two treatments before we finally got up to his room.

Once we got to his room though, things just kept getting worse. He screamed for about two hours while our patience wore paper thin, until he finally got another breathing treatment. The treatments were supposed to work for two hours, but after only about 20 minutes, Stephen was screaming again. The respiratory therapist gave him one more before deciding to up his dosage of medication and do a series of three treatments back-to-back. But it quickly became clear that that wasn't working either. Stephen's temperature got up to 102.4 and then some panic set-in. Well, the panic set-in on our part, and the doctors and nurses just started scrambling figuring out what to do next.

My huge concern was that with a pulse hovering around 220 and respiratory rate (breaths per minute) in the 60s, he was going to either go into some sort of arrest or need to be intubated (breathing tube) like what happened back in January in the NICU when he got pulmonary hypertension. What they ended up doing was giving him the maximum amount of albuterol allowable (the breathing treatment drug) in a continuous manner. And he's been on that ever since.

Eventually his temperature came down from the cold wash clothes we kept on his forehead and legs, but no one ended up getting any sleep. The albuterol unfortunately gives Stephen some tremors in his legs and actually raises his heart rate (sort of like caffeine), so he hasn't really slept at all. He did fall asleep tonight around 9:30pm, but between his cough and the nurses taking vital signs every hour, he isn't really able to get any solid sleep. Which of course means we don't get any real sleep. But what's another night of bad sleep!? Oh and since it takes 72 hours for the results of his labs to come back, we're also on isolation. So I can't even go to the damn pantry to get a glass of water!

But thankfully Stephen hasn't gotten any worse since last night. He's holding steady right now on the same treatments, which is ok for the time being. As long as we never have another night like last night, I'll be thankfully. There's nothing scarier that watching your child struggle to breath!!


  1. oh, I am so sorry lindsey! We are definitely praying for all of you. Poor sweet boy. Praying for wisdom for the doctors and for good sleep for all of you!

  2. Thinking of you all....get better Stephen! Here's to a better solution and some much needed rest. You are a strong mama!
    Kelly Ellis

  3. I am so sorry to hear about what your son is going through. Wishing your family all the best. My thoughts are with you all. Get some rest so you have some energy for when Stephen gets home from the hospital.
    Natalie Reidel

  4. Der Lindsey,
    We are so sorry to hear that our little Superman is not feeling well. We are praying that the the next hours will show some real improvement in Stephen's condition.
    Love and Hugs....
    Aunt LuAnn

  5. Lindsay, Bill, Stephen and loving family members, you have always been in my prayers and will continue to be. If only we could pull all of the energy and strength your caring and concerned friends have so that we could pass them to you for your use. You are such wonderful and strong parents, Lindsey and Bill - so admired by so many. Please know that there is a fairly silent, yet strong, majority of people out here who are praying for Stephen's health and for continued strength for you. God Bless you all.
    Peggy Carnahan