We got blood culture news today. The bacteria that is growing from Brody's blood cultures from Feb 28th is Burkholderia gladioli. It is found in soil and water normally. It can cause serious life-threatening pneomonia in kids with cystic fibrosis. We suspect that Brody's left kidney became infected with it through his nephrostomy tube and then entered his blood stream through his left kidney. On Tuesday February 26th around 8pm, Brody was playing in our playroom and Geordi suddenly noticed that Brody's nephrostomy bag was not connected to Brody. It turned out that his nephrostomy tube had fractured/had just broke clean through. So the tube that goes straight through his back and into his left kidney was open to air and rubbing against Brody's shirt and whatever else he was bumping into at that time. It definitely became an unsterile tube going right into his left kidney. We cleaned the tube as best we could once we had discovered what had happened and took Brody to the hospital that night. The nurse that evening also tried her best to remedy the situation and prevent even more contamination but certainly contamination had already occurred. Brody had surgery on Wednesday to remove the contaminated tube/replace with new tube and place the internal "stent" on the right side. On Wednesday night Brody started with the very high fevers, tachycardia, and his white counts plummeted. The big surgery to remove his tumor had to be postponed due to this. He was started on multiple IV antibiotics at the start of the first fever. He was afebrile and all vitals were stable on Friday morning and so his big surgery began. During the surgery most of his tumor and his left kidney were removed. It is likely that the major source of Brody's infection was in the left kidney that was removed. He has still been experiencing fevers, low blood pressure, decreased urine output, and tachycardia periodically after his surgery. These are all signs of sepsis. Fortunately, (knock on wood) he has not had any episodes like this today so far. Also, his blood cultures have all been negative since Feb 29th. Brody's IV antibiotics were changed today after learning what the culprit bacteria is in his blood stream. Susceptibility results are not back yet though. It generally takes about 5 days for these to come back which will give better information about what the best antibiotics would be to treat the infection. We may here these results sometime tomorrow. The antibiotics he has had so far seem to be working though and it is likely that much of the infection was in that left kidney that was removed. So hopefully he will kick this infection soon (and not start up with any new ones).
Brody is continuing to progress well and he is handling everything he has been through beyond exceptionally well. Brody had to get out of bed and walk to a chair and sit up in the chair for a while for the first time since his big surgery. This was extremely painful but Brody was very strong and got through it. He knew he just had to do it. He has just got back out of the chair and back into the bed so he can take a nap. He said the pain was much less on this second time getting up.
Today is Brody's 7th birthday. We celebrated his birthday early before coming into the hospital. He had a party at a bowling alley. He had 28 friends come bowl, eat pizza, and cake and open presents with him. He loved his birthday party and I am so glad we celebrated early because he certainly is not up for much celebrating today. The Childlife Program here at the hospital decorated his room for his birthday and brought him several presents to open. He really wanted to open them when they first arrived and he did open a couple. But he was just too tired to open anymore and not really in the mood to get too excited about anything today. He is still pretty out of it with the morphine that is controlling his pain. We decided we will wait until he is feeling better to open the rest of those presents.
Brody's next big thing he wants is to get his NG tube out. He is really not fond of this large tube coming out of his nose. The surgeon says it has to stay in for at least another 1 to 2 days. They are using it to suction fluids etc out of Brody's stomach. His bowels are not moving enough for that to come out yet. If they pull it too early and all those gastric juices accumulate, it could make Brody throw-up which would be an extremely painful situation right now. Brody is very hungry and thirsty as he has not eaten or drank anything since Thursday evening. He can't eat or drink until this tube comes out. An orange popsicle is tops on his list when it does come out. He was allowed to suck on a cherry sucker today and they have been allowing us to swab his mouth with water.
Brody is being tried on room air again right now. Let's hope he does ok with this. He finds the oxygen tubes in his nose to be pretty annoying.
Anyhow, overall Brody is doing well. We expected it to be a rough road. It was a TREMENDOUS surgery. Brody is getting through it all one step at a time and one day at a time.
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