They keep telling us the risk of infection after gtube placement is low, even for chemo kids, yet here we are spending another weekend with our favorite hospital buddies Meg & Addie, both kids with infected gtubes! Seriously!?!?
We did get out for about 24 hours Wednesday night after surgery. When we got out we headed straight to the cape. Thursday was a beautiful day by the water. Kai was pretty sleepy and his eyes seem to be really sensitive to the sun but we we had an early morning walk by the ocean and spent as much time as we could sitting under the umbrella out on the porch.
Traveling with a feeding tube, pump, meds and a new surgical sight is a lot of work. I woke up in the morning with Kai sleeping with me on the couch, his pump beeping and an empty syringe of meds next to us that i still don’t remember giving him.
By Thursday morning i noticed Kai tube site was looking red. By the afternoon i noticed some puss and the redness was getting worse. He did not have a fever but he was also on tylenol from his surgery. I ended up calling his doctor and of course he said ” You need to come into the ER right away, and I would bring anovernight bag.” And that was then end of our mini cape vacation.
We arrived at the hospital at 9pm thursday night. The ER docs said it just looked like local irritation and sent us home at 11:30pm only to have us come back for our scheduled clinic apointment at 9 am the next morning. Thankfully we were able to stay at Ashley and Joes house which is less than 10 mins from the hospital. I dont know what i would have done if we had to drive back home after all that.
Today we saw the doctors at the Jimmy Fund clinic and as soon as they looked at his tube they told us it was infected
and we were being admitted….of course! I still can’t believe the ER sent us home! We could have started antibiotics last night.
Kai is now on IV anntibiotics for the next 48 hours Hopefully we caught it early and it wont spred to his port or shunt. Little Addie had to have her central line removed a few days ago because her infection had spread 😦
For now all wew can do is give him the meds and weight.
Two pieces of good news:
1.Kai’s rbc count actually went up a little! He did not need a teansfusion today like i was expecting. Hopefully his RBC will continue to increase untill next chemo treatment and i can stop worrying about him having some crazy underlying
2. We are bunkin with Addie and Megan! If we have to spend the weekend here at least we’r in good company.