A very long week

Last Saturday Jonathan started week # 3 of his home infusion antibiotic treatment. That day, he also started running a low grade fever that spiked over the weekend and that we could not link to any other symptoms. On Monday we were scheduled to see Dr. Markert, his neurosurgeon to remove the last 6 stitches from the top of his head. As we were getting ready to go to the clinic we discovered Jonathan had developed a rash all over his upper body. In clinic, the doctors couldn’t decide if we were facing a delayed allergic reaction to the antibiotics or if there was an infection somewhere else in his body, possibly in or through his PICC line. They decided to leave his stitches and to do more blood tests including blood cultures in order to rule out an infection on his bloodstream.

On Tuesday morning we received a call from one of the Infectious Diseases doctors who instructed us to stop antibiotics all together and explained that as soon as they had lab results back they would tell us what to do. They suspected an allergic reaction to the antibiotic and set up a plan to change medications once they ruled out another infection. For three days we were literally on “stand by” waiting to hear from the doctors while dealing with Jonathan’s fever at home – that continued to spike making him feel really bad.

On Thursday we got a new call from the ID office telling us that Jonathan’s white blood cell count was really low, that they needed more blood work done, and that after that they would make a decision on the change of antibiotics. The problem was that they were planning to do that on Monday. That left us uneasy. We did not understand what all of this meant and we were concerned that Jonathan was going to be left without any treatment for over a week. Last night Jonathan’s fever spiked even higher that before and that made our neurosurgery nurse arrange for us to come to the clinic ASAP to do a CT scan, x-rays, and more blood work. So today we spent all afternoon at the clinic getting all of these tests done.

This morning the doctors feared that Jonathan could have a new abscess in his head or that he could have developed a blood infection. The CT scan showed that his head is doing well, and the preliminary blood cultures are negative for blood infection. But it is still not clear why he is having high fevers and why his white blood cell count is so low. They explained to us that sometimes antibiotics can deplete white blood cells, so that would be an option. At the same time, a very strong infection can also bring those levels very low. So making a decision on what to do is not easy. At the end, they decided that the safest route would be to start Jonathan on a new antibiotic today -while still in the clinic to observe any reaction, and to have yet more blood work done on Monday to see where his white blood cell count is by then.

We are back home, that is good. Still with fever and not knowing exactly what is going on, but trusting God’s power and His provision through the medical care we have available. Tonight we pray that the Lord will touch Jonathan’s body and that his white blood cell count will go up to where it needs to be. We pray that the new antibiotic will be effective to continue treating Jonathan’s bone flap infection and that it won’t further compromise his immune system. We pray for rest.

A good friend reminded us yesterday, “this is a bump in the road of the bump in the road”. It certainly feels that way. May God help us to be focused on the main thing and continue to trust in Him. May He receive the glory for the salvation He has already given us, the future glory that awaits, and yes, even the bumpy road in which we are today.

Thank you for walking with us.