On August 30, 2015 Ray was admitted to Fairfax Hospital with a fever that had been going on for 5 days. This resulted in a month long admission much of which was in the PICU. We appreciated the amazing support offered from friends, family, and physicians. We received calls from many of the doctors who’ve cared for Ray over the years and even a visit from Dr. Harville who arranged a speaking engagement in DC at that time. Local friends came and brought food and sat with us through some of the darkest and scariest days.

Following are the Facebook posts from that event:

August 30: Ray has had fevers of 100.5 on and off for 5 days. Last night and again this morning it went to 101.8. He’s being admitted to Fairfax. Cultures are pending but so far we only know his white count is down to 1.8.

August 31: Ray’s getting 2 IV antibiotics and IVIG. He’s still spiking fevers. This morning was the highest so far, 103. They will draw labs again later today so we will see how is white count is doing. Meanwhile, he’s in isolation and on neutropenic precautions.

September 1: Frustrating day, whether from the antibiotics or whatever is causing the fevers, Ray has been losing more fluid than what’s going in. Had to stop all enteral feed/formula. Still spiking fevers, though not as high. Adding TPN and albumin to help with nutrition and fluid balance.

September 3: This morning Ray’s temp again went up after getting ivig and he was shaking badly. His heart rate was elevated but began fluctuating. This landed him a trip to the picu. They believe that dehydration, low electrolytes, combined with the rapid temperature increase was the cause as opposed to a heart related issue but they are keeping him in picu for now to monitor more closely.

September 6: Things with Ray have taken a major turn for the worse overnight. If any of you believe and can pray for him he could sure use the help. The next 48 hours or so will decide how this will turn out.
Unfortunately it doesn’t look good. Thank you friends for your positive thoughts, we need them.

September 6: I need sleep but wanted to give a quick update. Ray was intubated, placed on a ventilator, this evening. This is the first time since before his SCID diagnosis that he’s had an illness like this. This feels very similar to what we went through with him before his first transplant. It is still unknown what type of infection he has. So far cultures have not provided an answer. He’s on daily IVIG, 4 antibiotics and an antifungal. The PICU only allows two people to be at his bedside. He’s not awake so he cannot talk to visitors. He’s also in isolation as he has no white cells. Please say a prayer for Ray Ballard. #stupidSCID

September 7: Nothing really new today. It’s just a wait and see kind of day. He is sedated and on the vent. They did perform a bronch today to lavage his lungs to try to collect a sample which will contain some of what’s in his lungs. He’s on multiple antibiotics and an antifungal, plus daily IVIG. Waiting on lots of cultures and PCR analysis to hopefully bring some answers and correct direction to aim the pharmacopeia.

September 8: No real updates today. Docs won’t commit to Ray Ballard being better or worse (I suppose that’s a good thing?) He’s been more awake today and has an attitude about having a breathing tube down his throat – we all would.  Still haven’t identified what is causing his illness / lung problems.

September 8: Not much change in status today. He’s on the vent and we’re still waiting on more culture results. They are keeping him somewhat lighter sedated on the vent so he was trying to communicate by cueing to us. He told us he was itchy and that his wrist hurt. He also wanted the TV clicker

September 10: Well the GCSF seems to be helping Ray’s white count. It went from 0.75 yesterday to 1.96 today. His lungs however, looked somewhat worse. The xray had more “white” in it than yesterday. Lungs should look black on an xray because on an xray air looks black. This could be because the white cells are responding to his lungs to fight off what’s there, so the intensivist wasn’t too concerned yet. They are going to continue to try and get fluid off of him. All the medications he’s on means a lot of fluid going in and so they need to get more fluid off and are going to use diuretics but they will have to watch his electrolytes closely as they do this.

September 11: Minor changes today. The big news is an increased white count to 3.9! Everything else is much less significant. They are trying to get more fluid out of him. Only minor vent changes/tweaks. Still sedated most of the time and still in isolation.

September 12: Some ups and downs. Low fever has come back but he has more white cells today. He’s up to 6.9 white count today. Despite sedation he has been awake on and off and has now requested his iphone! He’s using a combination of cueing and finger spelling to communicate with us. He can’t talk with a tube down his throat and he can only use one hand with limited motion. He’s still in isolation and off course still on the ventilator.

Septemberr 14: Things are moving a snail’s pace here, hence there hasn’t been much to report. Ray is still in the PICU and on a vent. He is awake for part of the day and has requested both the TV remote and his iPhone. He’s been texting, but most likely it’ll come across as “drunk” texting as he is on narcotics. His white count improved greatly with the help of GCSF and was a 9.6 yesterday. (That’s up from 0.75)

Clinically, he’s improving slowly. He’s been holding too much fluid and the goal now is to get much of that excess fluid off. While he has a single port they needed more access. They were able to get a periphal in his right arm by using a sonogram. There’s not much hope of finding another if this one blows. They are beginning to wean the vent to see how he does.