Finally, pneumonia is gone!

Well, what was supposed to be a straight-forward treatment for strep pneumonia turned into Amoxicillin for 20 straight day in which 10 of those were double strength and a second antibiotic for 5 days.  At this point, we’re hopeful the pneumonia, fluid and atelectasis are all gone.  We are hoping that we’re in the clear, at least for longer than our last stretch, but we are never really sure.

We visited with the new infectious disease specialist on Thursday March 13th and both Jeff and I felt confident when we left.  Rylee had some more blood work done, to check her other Ig levels and to check her IgG response to vaccinations.  She was tested last March, a month after she received the adult pneumococcal vaccine and we were told by the doctor in Winston Salem that her titers were fine.  We figured at that point, we were finished checking and discussing immunodeficiency problems.  However, after some additional blood work in February, Dr. Ashe, her pulmonologist, referred her to an Infectious Disease Specialist.  After spending over an hour with him and briefing him on Rylee’s history,  he discussed his plan of re-evaluating her blood work and coming up with a plan after the results have been reviewed.  We are scheduled to return on Monday April 15^th.  At this point, we are unsure what type of immune deficiency Rylee has but we are hoping to find out.  The ID specialist told us that he was sure he’d figure it out, but that it may take a few months.  It seems that some children lose IgG from gastrointestinal issues, but we’re certain Rylee doesn’t.  He also stated that sometimes children produce enough IgG, but with the high demand of it in their body from recurrent infections, they can’t keep up the supply.  Other children just don’t produce enough.  We are thinking Rylee falls into one of the two last categories.

The ultimate goal is to cut down on the number of infections and the severity of them.  There is a chance that Rylee may need IgG replacement therapy.  It can be done through IV (IVIG) or subcutaneously.  IVIG is usually given once a month, in a hospital.  About 50% of children who receive IVIG suffer with adverse reactions such as fever, headache, nausea, fatigue or chills.  Subcutaneously, shots need to be given once a week.  There is less adverse reactions and it can be done at home, rather than in a hospital.  We’ll discuss further if Rylee needs IgG replacement therapy after the results of her latest blood work have been reviewed.

Rylee continues to cough like an 80 year old with emphysema, but after speaking with her doctor, she expects the cough to linger a few weeks more.  This past week, we are completely off antibiotics, Rylee already sounds congested.  We are hoping she isn’t coming down with a cold or something else as we have a full few weeks ahead.  The only thing we can do at this point, is continue nebs and vest therapy and hope it keeps the lungs clear.

Welcome back pneumonia

This pneumonia wasn't like many of the other cases.  Most of the time, it seems pneumonia settles in after a long battle with a sinus infection or upper respiratory infection. This time it settled quickly. Monday morning started off like any other, a mad rush around the house to get out the door, making sure Vest therapy and nebulizer treatments are done.  Just as we were getting ready to walk out the door, we heard a cough from Rylee.  The "junky" kind. We assumed it'd be like all the times prior, a lingering cough that would go from a sinus infection possibly into bronchitis or pneumonia, unless we could catch it at just the right time. So we'd watch and wait. Unfortunately, it came quicker than we were prepared for.

We picked Rylee up from school Monday and she looked drawn out and sad. My first thought was someone hurt her feelings.  The more I asked, the more she withdrew. We went to Chick-Fil-A for dinner and her mood didn't seem to get much better.  Jeff and I joked that she must have a case of the Mondays. Things seemed to progress normally until about 6:30 pm when I saw Rylee shivering under a blanket. For a kid who is constantly hot, I knew this was out of the sorts. I asked her if she felt ok and she replied that she felt fine, but was so shivery cold.  Before I knew it, she had resorted upstairs to my bed, alone in the dark, under two blankets still shivering.  I again checked, assuming she'd have a fever by this point. I was wrong. She fell asleep by 7:15, quicker and earlier than most nights.  Within a few hours, her temperature started to rise.  At this point, I was extremely concerned she'd picked up the flu.

We made a trip to the pediatrician early afternoon on Tuesday. Beforehand, I knew something wasn't right by the way Rylee was acting. We did neb treatments and Vest and had some breakfast together. I must admit, the one plus to having sick days is getting to spend extra time with my munchkin. After breakfast we headed back upstairs to get dressed for her appointment. It seemed like Rylee could barely make it up the stairs, hunched over using her hands to crawl up.  Once she got upstairs, she laid on my bed, watching TV and didn't move until I said it was time to go. She looked so pitiful, dark circles under the eyes and such pale skin.

At the doctors office, Rylee sat on my lap and fell asleep. This is usually the kid who dances and makes faces at herself in the mirrors at the office. Once her doctor listened and heard the symptoms, she immediately diagnosed pneumonia, bi-lateral.  We opted to get the x-ray.  Although it wasn't going to change the course of treatment, but for a kid who just had a mucus plug fished out via a bronchoscopy, an image might be good for future use.  The x-ray confirmed exactly what the doctor diagnosed, lower lobes of both lungs were invaded by pneumonia.

Rylee and I returned home and immediately started antibiotics. Tuesday seemed to progress without further issues, although Rylee continued to look completely drained.  Just after 1am Tuesday morning, Rylee woke me up saying her tummy hurt. Knowing how often Rylee deals with constipation, my first question was asking if she needed to go potty. Before she could reply, she immediately started vomiting-all over my bed, me and herself. I tried to rush her to the bathroom, but was not successful in getting her to the potty before she vomited on the bathroom floor.  Finally she stopped and the clean-up effort began. Jeff (who is so wonderful to clean up vomit without batting an eye) worked on cleaning up Rylee and the bathroom as I cleaned myself up and changed the sheets on the bed.  I think it was almost an hour before we got back to bed.

Rylee stayed home on Wednesday with Jeff and vomited several more times throughout the day. Our main concern was if the antibiotics had time to be absorbed before throwing up.  Our first thought was that the vomiting was a reaction to the antibiotic.  We promptly called the pediatricians office and asked for a different medication. We started the new antibiotic Wednesday evening.  Within 45 minutes, Rylee has vomited again. At this point we assumed it was a stomach virus and not the medication.  About midnight, Rylee woke up again feeling nauseous. We once had been told by a pediatric ER doctor that Benadryl could be used for nausea, so we quickly gave her a dose.  She soon fell back to sleep.

We had already decided she'd stay home on Thursday.  So Jeff and I could return to work, My mother -in-law said she'd watch Rylee for the day. Things seemed to be on the up and up. Although she still looked tired and drawn out, she was holding down food and liquids, but more importantly medicine. Energy seemed to be slowly coming back, but we certainly didn't want to push her. Our initial thought was to have her return to school on Friday, until I had a quick conversation with the daycare director. She informed me there were a few viruses floating around.  It became a last minute decision to keep her home again Friday, to help avoid picking up any other crud.  

Sitting here now at 10pm, I am certain it was the right decision to keep her home. When diagnosed with pneumonia, for the 8th time in less than 4 years, we were told it was a straight forward treatment and Rylee should be on the mend quickly.  But of course it isn't, not much has come easy to Rylee the last few months.  In the last 10 months, Rylee has had two episodes of bronchitis, four episodes of pneumonia either bi-lateral or right lung and multiple sinus infections. In those past 10 months she has been hospitalized 3 times and this weekend we could be headed for her fourth.  I'd like to go to bed tonight knowing those little lungs are kicking pneumonias butt, but I am just not so confident.  I will continue to monitor her breathing closely, giving nebulizer treatments as often as I have to.  So, welcome back pneumonia, you really didn't have to return so soon.