Friday, March 22, 2013

Lessons from the Hospital

Dean has had bad sinus congestion for the 400th time this cold and flu season. Doesn't help that his sinuses suck from facial anatomy issues related to PWS, and that all our fluctuating weather in Richmond has made everyone's allergies worse.

As usual, we brought Dean in more than once to the pediatrician because he's always fine... fine... fine... and then it gets bad. We have been able to catch it each time this season before it turned to pneumonia, which is a big difference from last year when Dean had pneumonia 4... 5 times? I lost count. 

Yesterday, Dean wasn't himself at school and so Bob brought him home early and then we scheduled a 5pm doctor visit to get him checked out. The verdict: sinus congestion and everything else (including lungs) was clear. Then we put the boys to bed around 7:30 and Bob noticed that Dean's breathing was rapid. He was lethargic. I hooked him up to the pulse ox and his sats were at 88. Definitely not normal. :( After consulting with the on-call pediatrician, we brought Dean to the ER at St. Mary's and got the whole workup. 

Dr. Miller and I decided last year after all Dean's pneumonias that his gold standard for treatment was signs like what I described above. Because we got to the ER and they listened to his lungs and they STILL sounded clear. Folks, YOU KNOW YOUR KID. Moms of special needs kiddos especially have been through the ringer and know when something is up. Thankfully, the doctors realized that we knew what we were talking about and were very amenable to listening to us and taking care of Dean accordingly. 

The chest x-ray showed a developing pneumonia in his right lung. We were right. And they weren't too keen on giving Dean fluids because of needing an IV and they were just hoping that we could get Dean to drink on his own. His other signs of dehydration all looked normal, but we knew something was up. Dean slept pretty much the entire time at the hospital, so there was no time to give him fluids, and now he was running a fever (his first ever... and I guess it's kind of a good thing, since a lot of kids with PWS don't run fevers, and you're *supposed to* run a fever when you have an infection). We asked for fluids and they went ahead and got those started. Within half an hour, Dean was breathing more normally, his fever was gone, and we knew we were heading in the right direction. He started on antibiotics that will hopefully continue to kick the infection. Dean's sats while sleeping were still not fantastic, but the docs knew that we had oxygen at home and knew what we were doing, so we asked to be discharged. We came home around 3 am and are obviously just all resting today. 

While driving Dean to the hospital (of course, Bob was on call, but the good thing was that he was able to get coverage and meet us in the ER), I asked the question I always ask, "God, why? Why? Where are you? Show me you are here... I know you are here." And like a wave washing over me, it all came: 

God was in our neighbor Jennifer who came over to watch Cole and Emmett while I brought Dean to the hospital. 

God was in the literally hundreds of people who were praying and loving on us through Facebook. 

God was in the neighborhood board meeting (I'm joining the board, you know, because I have nothing else to do) that was supposed to meet that night at our house but instead was moved to a different location a few days before. 

God was in all the calls and texts of those who were willing to do whatever or bring whatever to help us during this time. 

God was in the doctors and nurses who were responsive to Dean and acknowledged that we were the best judges of Dean's health. 

God was in the hearts of Bob's coworkers who came in even in the middle of the night to relieve him from his shift and to give him the day off yesterday and today to help take care of our family (all three kids are sick and we were supposed to go away this weekend, so they let him come home and arranged coverage for the two days). 

And so much more. When we got to the hospital and were waiting to be seen, I opened my 3-minute retreat app from Loyola Press (they are not paying me to plug this) and was ushered into a small reflection about the loving presence of God. The concern I have for my children and for Dean in this moment is the concern that God has for me, and for them as well. The loving presence of God. 

This bout of pneumonia will probably mean more conversations with doctors and a trip back to the pulmonologist. Dean was already dancing to the Fresh Beat Band this morning while watching TV. Hopefully, we are headed in the right direction, by the grace of God. 

If you like this post, would you mind passing it on? Having your child in the hospital is a lonely experience and I want others to know they are not alone. 


Cinra said...

Yes we know our children. My son Klint only had pneumonia once when he was young, but has had it multiple times now that he is in his 20's. The only time he ran fever as a child was the one time he had pneumonia. True to course, every time he has had fever in recent years, he has had pneumonia. It develops very quickly. We had the same situation time before last in that he sounded fine, but his left young had pneumonia in it.

Continue to always stand fast in taking care of Cole.


Goeltzy said...

I am not what I would call a religious person but you touched me so much by this post. I am amazed by your strength daily but to see how you found God by your side during such a hard time shows to me how much faith you have. You are very inspiring to me in so many ways.

Ali Foley Shenk said...

I'm glad that sharing is helpful! That's what the blog is all about. :)

Leighann said...

We ARE His hands and feet, no doubt about it. I echo your sentiment. Our son was in the hospital for almost his entire first year... our church community took care of us the entire time and months after.