Monday, January 20, 2014

John William's Lungs

Well I haven't posted in 3 months.. I've just about decided to give the blog up, but I love reading others!!  I want so bad to keep it up and print at the end of the year as a scrap book for our family.. but I have failed.. oh well- better luck this year??

I know I only have a few readers,  but for those that were wondering I will fill you in on John William's lungs and recent visit to Children's Hospital.  December 2012 brought our first round of pneumonia, and to be honest, the 'junk' (as we like to call it) has yet to leave his lungs.  March of last year we had our first visit to the Pulmonary Clinic at Children's hospital and have gone back every 3 months for routine checks.  They decided John William has Middle Right Lobe syndrome which is common in young children and it is basically when the 'junk' just stays localized in that one area.  The week of Thanksgiving John William spiked a high fever along with coughing.  I took him the very next morning these symptoms started and sure enough the x-rays showed all the junk in there and we decided he had pneumonia and after results from a nose swab we found he had RSV.  We got over it after about a week, but then found ourselves back at the pediatricians office the week of Christmas with the same symptoms.  We were treated with antibiotics once again.  We had our normal Pulmonary clinic check up scheduled for January 9 and they of course knew about our most recent bouts with the pneumonia.  Our doctor decided he wanted to do a bronchoscope to go into his lung to get a better look at his airway passages, chambers of lungs, as well as getting some of the 'junk' out to get cultures on it so we'd know specifically what this junk was.  We had the procedure set for the next week in hopes he wouldn't get sick within that one week.  Of course John William stays pretty congested and has a wheeze on and off most of the time.  The day before our procedure I just knew he was going to spike a fever and we'd have to postpone.  Thankfully, even though he started acting as if it was sure enough coming, he didn't.  We were at Children's thursday morning at 6 to prepare for his 8:00 procedure and were hoping to be home by about noon.  We gave John William one last breathing treatment before they took him back to try and clear things so they could get in without any problems.  They took him back and about an hour later the doctor came in telling us everything went great.  He actually said he was shocked at how clear his airways were because of how he always sounded and due to what his lungs look like.  They explained that he has something called Malacia in his middle right lobe, which is where the cartilage is weakened in that area so that part of his lung his more floppy so it makes it that much harder to get the junk out.  There is nothing you can do for this other than get whatever the infection is in there out, and it should cure itself.  He said we would know what the infection was in a few days.  He was to be in recovery for about 30 minutes to an hour.  They called the room we were waiting in about an hour later saying that John William was fine, his oxygen just wasn't going up so they were going to keep him a little longer.  This was a side effect we were warned about.  Because he keeps a wheeze and has the lung issues anyway his oxygen level varies.  Children's likes your number to be above 92 before they let you leave, and he was staying about 88.  About 30 minutes later they called us back and told us his levels just weren't staying up so they were going to admit him so he could stay on the oxygen and wanted to  make sure it would stay up as he slept.  This was something I wasn't prepared for, so my heart sank a bit.  However I knew we were in great hands and in the best place we possibly could be in.  I'm definitely one of those better safe that sorry kind of people so I was on board 100%.  There are many many sick children at this hospital, and it is very humbling to see.  I am so thankful that for the most part John William is a very healthy boy, but walking around the corner to see your baby with tubes in his nose helping him breath is hard on a mamma- or at least on this mamma.
We got into our room and got John William to take a nap.  He started the morning at 2 liters of oxygen and by late afternoon we were on half a liter.  For a little boy that likes to just be put in his crib with the door closed, it was a long night getting him to sleep.  He sleeps much like a helicopter spinning around, this made his oxygen tubes come out, so there was about 4 times in that night that the buzzer went off because his oxygen was getting too low as he was sleeping.  We'd get it back in and he'd be fine.  When morning came the doctor took it out to see what would happen, and he would just hang out at a level of 89.  We were now on .25 of a liter- not much, but he seemed to like it.  They decided to give him some steroids to boost him up.  That made all the difference.  About an hour after that he was able to keep his oxygen at 91- even while sleeping!  we got to the magic 92 number and he stayed there the rest of the afternoon fluctuating from 91-94.  This was a good thing!  We found out that he is growing a bacteria in his middle right lobe ( a really long H word) and for that we are on a month of antibiotics, plus prednisone steroid, and his normal asthma inhaler, and breathing treatments.  We are home and doing much much better!!!!  We are very thankful for Children's hospital and all of their care.  The doctors and nurses are wonderful along with the facilities.  Again, there are many very sick children there, especially on the 10th floor pulmonary unit, we are so blessed to be on the mend.

Before the procedure.

Pops brought him a ball, which made him very happy!!

Oh how I love this little boy!

Hey!  He loved sitting in the big window.  Looking down 10 stories was a bit scary for me!  Notice he has his tube over his nose…  He surprisingly only did this about 4 times!

Sleeping.. with no oxygen!!

Coloring in the big window.  We had a great view of the new Birmingham Barons new baseball facility. 

Once we got the word we could go home, we got comfy, and he was out.  Ahh, relieve!  Thankful to the wonderful nurses and doctors.  And now thankful to be home!  We go back in April after we've taken antibiotics for a month and then off a month to see that hopefully the bacteria is gone and hasn't decided to grow back!

1 comment:

  1. He looks so sweet in those pics! Glad he is doing better! Luv y'all