Jackson's Journal

Hi all,

Jackson has had a few ups and downs over the past few weeks. It started about a month ago when he spiked a temp and wasn't acting like his usual cheerful self. We took him in to the ED for bloodwork and a chest x-ray, all of which came back clear (except the blood cultures, which take at least 8 hours for preliminary results). They gave him a dose of IV antibiotics and sent us home. The next day they called us to let us know that his blood culture was growing bacteria (meaning he has an infection in his blood), so he had to be admitted for a couple of days. They were able to discharge him quickly and he continued on IV antibiotics at home for 10 days.

Four days after he finished his course of antibiotics, we took him in to clinic to have blood cultures drawn to make sure the infection was cleared. Unfortunately they called us the next day to tell us that the cultures were again growing bacteria - the same bug that had grown the first time. Because of the quick relapse the team felt that the infection was most likely being harbored inside his port... which means that the port had to be removed. Jackson had his port removed a week ago and a PICC line was placed temporarily so that we could continue to administer IV antibiotics.

The plan now is for him to get a full two weeks of antibiotics, then draw cultures and make sure the infection is completely gone, and only then will he go in to have another port placed.

Despite the turmoil of all this, Jackson has been doing really well. He hasn't been bothered by fevers other than that initial fever. He seems to be feeling just fine. He did have some pain after the port removal but we were able to control it well. We are very thankful that most of this has been done on an outpatient basis, which really limits his exposure to whatever germs he might pick up in the hospital. His port placement should also be outpatient. We hope that everything continues to follow the plan we have laid out with his team here and no other bumps pop up.

In other news, we had Part II of his IEP this week. It looks like, as of right now, Jackson won't be going into the wonderful communication-based classroom in the Fall. We put together a very good plan for him that will serve him well in the other class, and there is a chance that we may get a call during the summer to tell us that his placement has been changed to the communication class (we have our fingers crossed for this!). Overall we're happy with his program and excited for him to start Kindergarten in the Fall. Whether or not I'll be able to let go of him is another story .

We hope all is well with everyone checking in with us. If you have a moment, please send up a prayer for all the other Krabbe families. Thanks so much.

Peace and blessings,
D'Anne