Infection is a vicious cycle! The cure makes you vulnerable for further infection. A couple of posts ago I wrote about a bacterial infection that hadn’t been fully treated by antibiotics back in February. Well, at the beginning of last week that same infection grew back yet again! We don’t know exactly why, but as a result we spent a few days in the hospital while they worked out a treatment plan that would help to knock this infection out for good.
The plan included a change to the antibiotics he takes to control overgrowth of bacteria in his gut and a regimen of super high dose IV antibiotics prescribed for the next 6 weeks.
We were sent home on Thursday without Patrick ever having really been too sick. We joked that it must be time to plan a family vacation because with so many antibiotics, how could Patrick possibly get sick again?
That’s what we get for uttering the word “vacation”. Tuesday of this week Patrick wasn’t a very happy kid. He followed me around all day just wanting to be held. That night, he got another fever. At midnight, when it was rising, we called one of our favorite doctors at the hospital, Molly O’Gorman. She also couldn’t explain the fever, given the antibiotics, and so she recommended we stay at home till morning with the hospital would be less busy. So, we gave him some Motrin for his fever and I set my alarm clock to get up every hour to check to make sure he was still ok.
At 5 a.m. Patrick woke up just screaming. By 6 his fever was back and climbing rapidly. We gave him more Motrin to keep him from getting into even more danger and took him to the ER. He seemed to feel ok with the Motrin and the doctors were stumped as to the cause of the fever. But throughout the night he just got sicker and sicker. Every time his fever reducers wore off he’d have chills and high fevers and nausea.
His first night in the hospital was just miserable! I think we slept a whole 3 hours. By morning, the blood cultures came back with a definitive result, Patrick had a yeast infection in his central line.
For those of you who don’t know, Patrick fought a yeast infection for most of last summer.. and almost lost that battle. Yeast has to be the scariest bug I’ve ever seen him with. Unfortunately, this infection doesn’t seem to be much of an exception.
Yesterday was an eventful and stressful day. Because yeast loves to set up shop in catheters, Patrick’s central line had to be taken out yesterday. He’s strong and wiggly and fiesty enough now that he has to be sedated for this to happen.
This had a few ramifications for him. First, he had to have a transfusion. His spleen gets greedy whenever it’s sick and he becomes anemic. He’d fare ok for normal things, but in that state would not have been strong enough for anesthesia. The transfusion helped his blood counts, but it also further fed his blood hungry spleen and as a result he’s all puffy , swollen and sore today. His belly is hard as a rock and hurts, too.
Also, Patrick still has to have IV’s to keep up his blood sugar and give his medications. Right now, he needs 1 all the time, and 2 most of the time. But between the scarring and damage to his veins from previous IV’s and the effects of this bad infection, they’re having a hard time getting them in, or finding places to draw blood from for needed blood tests. Yesterday, he was poked over 10 times in 12 hours.
My poor little munchkin is sore and sad and sick. He has to have splints on his hand and arm to keep his IV’s from being pulled out, so playing with toys is frustrating.
The good news is that pulling out the line and treating with antifungals is helping. He hasn’t had a fever since last night! And this morning, for the first time in days, he is resting well enough that I was able to put him down. Hence, I found time to write this blog.
I apologize for the lack of pictures so far. When I get a minute, I’ve got some adorable stuff from our hospital stay a couple of weeks ago. This stay so far Patrick hasn’t felt well enough for us to do something as frivolous as picture taking… but now that he’s on the mend, I’ll be doing that soon.
As for mom and dad, well.. we’re pretty darn exhausted. It’s been nearly impossible to get a good night’s sleep.. or even to get a nap in. On top of that, we’re worried. We still have bad memories and plenty of heartache from our last experience with yeast infections. It’s scary to be facing one again… And it is the hardest thing in the world to watch your child suffer and not be able to take the pain away.
Still, all we can do is live each day as its given to us. It is more than a miracle that Patrick is still with us. He fought so hard to be here and is fighting still. We are doing all we can to make sure that he gets the best out of each moment he’s here.
We’ll keep you posted as we know more. For now, it’s just a matter of waiting for the medicine to do it’s job and then keeping these two infections from coming back.
Patrick Hoopes 