Is it summer yet?

Long overdue update.  I have been terrible at this blogging business.  I am sure this will get windy, but it's more for memory's sake than anything else.....

Isaac came down with croup and needed steroids on Jan 16th because his breathing was so bad.  The next AM, Caleb had a high fever and complained of pain when he took deep breaths.  (The same symptoms of when he had pneumonia.)  I took him to the doctor and he tested positive for Influenza A.  He was immediately started on Tamiflu and a "burst" of high dose steroids, and by that evening he was back to himself.  Friday, he had a good day and didn't have anymore fevers.  Saturday evening, he started having fevers again and started complaining of the pain while breathing.  After some calls, we were assuming it was still from influenza.  But by Sunday night, he was grunting when taking breaths, so off to the ER we went.

Thankfully the BMT doctor called ahead, so they were ready for us and got him right back to a room.  Once there, we waited and waited, until he started to hyperventilate and turn blue around his mouth.  That's one way to get things rolling!!  (Very scary for his mama though...)  The xray confirmed he had pneumonia again, on the opposite side of the pneumonia he had in December.  They immediately started antibiotics and said that he was going to be admitted to the BMT unit.

We didn't get settled in his room until 2AM, and people were in and out all morning.  By mid-afternoon we learned this he had bacteria in his blood.  Not good.  Many people die from this, and with the combo of influenza and pneumonia they were very worried for him.  They started another "big gun" antibiotic, and continued giving him nebulizers around the clock.

I got a call from Joel at 1 AM on Tuesday because Isaac was screaming that his ears hurt.  Joel's mom took him to the doctor later that morning, and he had a double ear infection.  I was so sad that I couldn't be there for him.  When C woke up on Tuesday, he seemed better but his blood pressure and blood sugar were really high.  Because of these two things, they decided to cut his steroids in half, hoping that his lungs would tolerate the change.  His wheezing did increase, but since he was comfortable and not breathing as fast they said that his lungs would just take a long time to heal.  The next 2 set of blood cultures came back negative, which means that the bacteria was cleared from his blood, which was awesome news.  However, since there was evidence of it when he was admitted, he would require 10 days of antibiotics.  They put a PICC line in and sent us home on Wednesday, which meant I had to hook him up 3 antibiotics three times a day at home.

He was checked in the BMT clinic on the 25th, and things were stable, although his lungs were still very junky sounding.  Again, they chalked it up to his lungs not being very good to begin with, him getting high doses of chemo, him getting pneumonia twice in a month on top of influenza...all things which cause major damage to them.  We continued the IV antibiotics, nebulizers, steroids, etc but by the 30th, his lungs continued to sound terrible (his 10th day of antibiotics).  They were concerned that the pneumonia hadn't cleared up.  A quick xray confirmed that his pneumonia did indeed clear up, and his lungs actually looked pretty good.  This didn't explain why they sounded so bad.  So after much discussion (without the input of his pulmonologist...another story in itself don't get me started), it was decided that they wanted to double his steroids again.  Boo!

His lungs sure love steroids, because within 1.5 days, his lungs sounded clear again.  But, now we are dealing with the effects of high dose steroids.  Caleb is super puffy, eating everything in sight (never thought I would complain about that), and moody.  He's depressed that he looks different, and spends a lot of time in the nurses office at school, because he doesn't want kids making fun of him.  He's insisted that no one has, but he is very self conscious about it.  Poor buddy! 

Since his pulmonologist didn't get back to BMT or me in over 2 weeks, I called her office and spoke with one of the nurses this week.  (We don't have an appointment with this doc until the 13th, another story, don't get me started)  Weaning his steroids is going to be a LONG process, and since he's doing well right now, I wanted to start weaning them now instead of waiting another week.  If he still needs that dose, fine.  But I wanted to at least TRY to start tapering them.  Steroids are not benign, and can have lasting effects on the body.  It makes me CRAZY that no one seems to mind that fact, and no one wants to take charge of getting him off of them.  Anyway, the lung doc said I could try to decrease one of his doses.  So far, he has tolerated decreasing the night time dose.  Hoping that they decrease the morning dose on Wednesday.

Praying that Caleb's lungs continue to heal and that we can all stay healthy!!  Thank you for your continued prayers!