Pneumonia and More

I read through months worth of Facebook posts and blogs.
It started as a quest to find old conversations with Dad.

What I found was an interesting history of Grady.
Grady sure has had a tough time with his ears and sinuses ever since we got the new tubes last December. He was kind of sick when we put the new set in and I just don't think they ever really got a shot at working for him.

We've had a long few weeks with him now...poor little guy.
He got out of the hospital early last week after a four-day stay for pneumonia. I've nursed Grady during some tough illnesses over the past three years, but this last one actually has been the most difficult. It went like this:

Shortly after Grady's birthday party, he developed a body-wide rash. It looks just like his "infection rash" (whenever he's sick he gets a rash over his trunk), but this time it was head to toe, so we thought maybe it was a heat rash or something he picked up in daycare. Then over the next weekend Grady's eyes started looking "sick." I seem to be one of the few who notices "the eyes," but they tell me every time.

By Tuesday, daycare called and he was pushing 101 degrees. I called the ENT right away, as we had already had 4-5 ear infections since April and they said if we had anything weird pop up to call right away.

We saw Grady's ENT who confirmed it was a double ear infection. And not just that, but one of the worst cases she's seen. The kind that "you really don't see in modern medicine" any more. She wanted to do surgery to remove the 2nd set of tubes to put in a 3rd bigger set and clean out all the infection. She gave us an oral antibiotic. We went back the next day and the antibiotic wasn't going to cut it, so she ordered 3 shots of rocephin.

This shot hurts...a lot. So much so that they mix it with lydocain to try to help with some of the pain as it's injected. Three days of this for my tiny little three year old. She also ordered an Xray as she was worried about pneumonia.

The pediatrician we went to see said it wasn't pneumonia and wasn't going to do an Xray, but would start him on the shot and told us to do our Albuterol breathing treatments twice a day with him. The shot that night was horrible. Torture on him, and his mom and dad.

The next evening Kai took him in for the shot only. Even more horrible because now our little man knew exactly what was going to happen. Kai came home and said he was not going to be able to do the last one because it was so awful!

It didn't matter. By the next day, Grady was covered in hives. Allergic reaction to the be-all-to-end-all super-antibiotic Rocephin. I took him in and asked to see a doctor. Covered in hives, grayish in color, wheezing and exhausted. They measured his oxygenation - at about 81-82%. That's bad. They want 90 or above, with 95% or better being the goal. Pneumonia.

He was hospitalized that night, but not before a breathing treatment, Xrays, a big blood draw for tests, a nose swab and a lot of things that scared Grady so much. They had him at 2L of oxygen to start with and they were contemplating putting him on high flow that first night. It took four nights for him to get to a point where he could sleep and his O2 levels weren't dropping to a scary level. The 3rd night they also ended up hooking him up to a heart monitor as the oxygen monitor got a reading of his heart rate down in the 30s a couple of times during the night.

Needless to say, all of that was unsettling. We finally got released with a regimen of drugs and instructions to come back in a week to be cleared for surgery for the ears. I took him in a week later and although he physically looked better and had more energy, he still was wheezy, coughing and the like. The pediatrician did another swab, this time for bacterial issues, upped the current antibiotic dose and added on a second antibiotic, plus the continued two types of breathing treatments several times a day. Two days later we get the results of the swab.

"This is a very, very complicated situation," the pediatrician said slowly on the phone. Grady has a superbug. A bacteria that is resistant to everything, pretty much. At this point we have only two options. Start one oral antibiotic that is not approved for use in children (with some very scary possible side effects, some that may not show up for a long time after use) or hospitalize him again for 4-5 days on an IV antibiotic where he'll most likely pull his IV out and have to be traumatized over and over as they have to keep putting it back in.

Neither sound great. And the ultimate goal is to get him well enough for surgery. But he won't really be "well" until we can have surgery and get his ears, and possibly his sinuses, all clean and fixed. It's a horrible catch 22.

Who knows what he's been hearing, or not hearing, and for how long? And the scarred ears...will there be permanent damage and hearing loss?

And I feel awful that we've been pumping his already not-so-hot immune system full of antibiotics that did NOTHING but kill off his own good bacteria and helpful germ-fighting things. And as we go into this surgery I have to think about intubation and atlantoaxial instability, and his not-so-stellar performances with anesthesia and pain meds, and just the overall trauma that this poor kid has already endured and will be enduring again.

I'm scared to do the surgery; I'm scared not to do the surgery. We may show up tomorrow and they may say he's not well enough to be put under, but I think this is as well as he's going to get if we don't have the surgery.

I've been trying all weekend to put it in God's hands.
It's ultimately where I've put everything else in my life.
But I must have some unresolved issues with God thanks to what happened with Dad, because I'm having a hard time coming to an okay feeling about all of this.

The last time I felt like this before a surgery, Grady ended up being overdosed on a pain med and he coded. A breathless, lifeless, purple little boy in my arms.
I somehow knew that things were not going to be okay with that surgery.

Is that what I feel now?
Or is my angst over my Dad spilling over into this?

I guess I don't know, but will find out soon enough.
Something has to be done to help our little man get well.
I pray for his safety, for the skill of the medical staff, and for everything to be okay.

I pray, too, for my stable base of faith to return, because I'm not sure about getting over all of the known and unknown hurdles life throws at me without it.