Hospital Stay

We are in the hospital with Brian so I am going to try and give an update of the last few days.

Brian started chemo this week. His second full week of the new protocol. Monday was horrible. He fought really hard and even ended up with a bloody nose. We had to pause and get him calmed down then start the process over again.We decided to leave him accessed (wear the port needle home rather than reaccess him each day). Even though Brian hates to wear the "butterfly" we figured he would adjust and that was the lesser of the two evils. Tuesday's chemo was uneventful.

Tuesday afternoon Kasy and I took the other three kids to ballet/tap and guitar lessons, so Fred stayed with Brian. By 3ish Brian brought Fred his PJ's and wanted them on. (An indication that he is not feeling well.)
When we got home at 5:30 Brian did not want anything to eat and wanted to sit my lap. By six he fell asleep in my lap on the couch. He was burning up but when we asked him he said he was really cold and could he please have covers. We took his temp and it was 101.8- 102.2. As instructed, we called the on call Oncologist (Dr. Parmley) and he said to head into the ER.

Once in the ER Brian received some antibiotics and blood was taken from both his arm and his port. The blood cultures were taken to see if bacteria will grow which indicates an infection is present. Then we were admitted. The pediatric oncology floor was full so we were admitted to the regular school aged peds floor.

In ER

Wednesday morning Brian was throwing up and had a bad headache. He was also a little dehydrated as he was off schedule with his Desmopressin hormone. (Long story short I drove home and got our prescription verses waiting on the pharmacy to bring him a pill. That was much quicker.) He also had a red rash all over.

After he threw up.

After some Zofran and a great nap Brian was doing OK. We went ahead with chemo last night and gave Brian Tylenol before and after treatment for the headache. Plus he was given more Zofran to help with nausea. They also continued to adminster some antibiotics throughout the night. (the Vancomycin that gave him the "red man rash" was given over two hours instead of one.) This morning he woke up red and splotchy, but not near as bad as yesterday. Brian also woke up with an intense headache. He is not much of a complainer, so Fred and I could tell that he did not feel well.

Feeling better, but still has the rash. Loving the ipad!

When the doctor came around this AM we discovered the blood cultures came back positive. Brian does have an infection in his port. The good news is that the blood taken from his arm came back negative, so the infection is not in his bloodstream. Brian's counts are dropping quickly, so he will not be receiving chemo today or tomorrow.

This means we are at the hospital for quite a while.  ;-) We have to have a clean blood culture for Brian to be released. He is getting antibiotics three times a day in hopes that we get the central line clean. If we cannot get rid of the infection he will have to have this port removed, his body treated for the infection and then a new port implanted. WE DO NOT WANT THIS!!!! PLEASE PRAY THAT THE ANTIBIOTICS WORK AND WE GET CLEAN CULTURES.

It takes 48 hours or more for the cultures to grow. The "more" is because he has been given antibiotics so the cultures tend to grow more slowly b/c of the exposure to antibiotics. It can take up to five days. Anyway, we are here until he gets a clean blood culture or the decision is made to remove his current port. Please pray for Brian Robert and our family. We were told to plan on a week to ten days from the first positive blood culture. (Tuesday night.) This morning Brian was moved to the Oncology wing. We are in the Publix room. Brian has signs on his door to wear a mask if you enter. ;-)

PRAISE God That Kasy (My brother James's wife) is here. A few weeks ago God laid it upon Kasy's heart to come help out during Brian's chemo week. She has been here watching the other three all week. She is doing school, feeding children and cleaning house. She's the mommy this week. :-) It is such a blessing to know that our other three are in their home, with their aunt who has a calm, sweet spirit. She loves them and she takes great care to stop and pray with them and talk about what they are going through too. We are so thankful to God for Kasy. (And thank you James for being willing to be alone for so many days.)

Please pray for a clean blood culture!!