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Another Tracheostomy in Our Future

On Friday, we removed Anthony’s PICC line and discontinued the TPN. That’s the good news. Unfortunately, the same day he spiked a fever and became congested.

On Saturday, it became clear that we had a very sick boy on our hands. Because of his congestion and fever, he was started on antibiotics via his J-tube. We were hoping to treat him at home.

On Sunday, Anthony went into severe respiratory distress, more than what one would expect with pneumonia. Obviously, this was more than we could manage at home. We brought Anthony to the ER, and since he was in respiratory distress, the ER team went right to work on him. They were ready to intubate him when a respiratory therapist tried putting his head back and holding his mouth closed. His breathing got better right away. They put a backward collar on him, the type you’d wear for whiplash, put a towel under that to keep his mouth closed.

At this point, it was becoming clear that most of Anthony’s distress was caused by a mechanical airway obstruction. We knew he had obstructive sleep apnea, but he was never obstructed to this extent. Maybe an upper respiratory infection had exacerbated the problem?

His chest x-ray was “unimpressive” meaning he did have some congestion, but not terrible (when doctors say something is impressive, they mean it’s bad). His WBC was only slightly elevated and his blood gases fairly good considering his distress.

He was started on IV antibiotics and admitted to the PICU. Now the question is do we trach him? It is pretty obvious to us that a tracheostomy will solve his obstruction problem. Of course a tracheostomy means another surgery, not to mention what’s involved caring for a person with a trach (I happen to know someone who wrote the book on tracheostomy care).

Over the past couple of days we have consulted with the PICU medical team, the surgical team, the infectious disease team, a pulmonologist and an otolaryngologist. They all agree – as do Rich and I – that Anthony needs a trach, the question is when.

He had a fever of 101 this morning, so there is something going on with him, but it’s not exactly clear what is causing his fever. There was no pneumonia, all cultures are negative so far (blood, sputum, stool, urine). He is on 3 different antibiotics. They want him to have at least 5 more days of antibiotics on-board before they do the surgery.

We are looking at possible surgery on Monday or Tuesday. Looks like he will be staying in the PICU until then, and then at least another week after the surgery. So, that is where we are at now.

Below is a photo from Rich’s cell phone of me with my tools changing the clamp and dressing on Anthony’s J-tube. This is a new device that most of the staff have not seen before. I don’t want the nurses messing with it, because it’s too easy to damage the tube. Yes, I’m a control freak! LOL! In the photo, you can see what is required to keep Anthony’s airway open until he gets a trach.

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More Complications

I left off last Tuesday when we were waiting for discharge from the hospital. We were literally discharged and on our way out the door when the nurse decided to give Anthony a dose of Flagyl (an antibiotic drug), so that he would not miss a dose. The Flagyl was very thick, sticky and gritty and it stuck to the inside of the J-tube, blocking the tube. We tried everything to unblock it, and in the process of trying to clear the tube, it was torn. At that point, there was nothing left to do but try and replace the tube.

Anthony went back to the floroscopy room where they threaded a wire through the broken tube, and removed the tube while leaving the wire in place. They then ran a new tube over the wire. The wire is used for proper placement and can be seen via x-ray. The first attempt with the same size tube (14Fr) failed, but they were able to get a smaller tube in place (12Fr). They then instilled contrast dye into the new tube to check placement. Since Anthony was already technically discharged, the doctor agree to let us go home with the new tube. So, again, we started off slowly and we gradually increased his feedings.

He was doing well and up to 40cc per hour (while still receiving TPN). Last night he had a fever, which was worrisome. So many possible sites of infection (and his Flagyl had been discontinued because of the issue with the J-tube). I gave him some Motrin, but today he was still febrile. Obviously, he had an infection somewhere. I called the surgeon hoping to get an antibiotic order over the phone, but the covering doctor was concerned that Anthony might be septic from his central line. True, could be his PICC line, could be a number of things going on with his tubes and bowels, could be pneumonia, as Anthony has a chronic cough due to aspiration.

So, off to the E.R. yet again. By the time we got the the hospital, Anthony’s temp was 103. They started off with IV fluids, blood work, including blood cultures, a chest x-ray and a urine test. After several hours in the E.R., they came to the conclusion that Anthony had a UTI (urinary tract infection). That would have been one of my last guesses after the PICC line, J-tube, G-tube, surgical incision, sepsis, peritonitis, pneumonia… So, I guess a UTI is good news. They gave him an IV dose of Levaquin (a broad-spectrum antibiotic). We will continue the Levaquin via his J-tube for 10 days at home.

We are home now and very happy that Anthony did not need to be readmitted to the hospital. He has a follow-up appointment with his surgeon next Wednesday. Until then, we will work on getting him to tolerate 50cc/hour of Peptimen via his J-tube. The next step is to discontinue the TPN and remove the PICC line.

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50cc/hour!

Anthony reached his goal of 50cc/hour via his J-tube at 7:00am this morning! So far he is tolerating it well. So, discharge is planned for this afternoon. We will continue with the TPN at home, until we are sure he will do OK with the J-tube feedings.

The resident just came in and removed Anthony’s sutures. Now we are just waiting for all the discharge orders.

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Tests, Tests and More Tests

We left off with Anthony being discharged Tuesday, February 8th with a goal of gradually increasing his J-tube feedings to 50cc/hour. This was not going well. He was barely tolerating 20cc an hour. On Wednesday night I had to shut off the feedings due to retching and gagging. Things were just not moving properly in his GI tract. Last night the feeding started leaking from around the tube and his abdomen was becoming firm and distended. My first thought was that the tube had been displaced and he might be developing peritonitis (a serious infection in the abdomen). We took him to the ER at 9pm Thursday night and the tests began. Not sure I can even remember all the tests, but this involved a night of blood work and x-rays that didn’t end until noontime today.

Anthony did have a fever and an elevated WBC (both signs of infection), but peritonitis was ruled out by a physical exam and a fluoroscopy study where they injected dye into his abdomen. While the dye did leak out from around the tube, it did not leak into the abdominal cavity. Good news. Looking at the CAT scan, it appeared as if the J-tube was kinked and may need to be replaced, which would mean another surgery. Before going back to the OR, the surgeon and radiologist decided to team up and see if they could correct the tube placement using a guide wire through the tube and visualization via fluoroscopy. Fluoroscopy is like real-time moving images using multiple x-rays. With some manipulation, they were able to get the tube properly placed. It’s hard to get a really good look with x-rays, but it seems that the balloon that holds the tube in place was defective. They managed to anchor the tube using a clamp system like the one in the post-op picture from my “Post-op Update, Day 2” entry. Eventually, once the J-tube tract is healed, they will replace this type of tube with something more permanent and secure. Hopefully, we won’t have this problem again.

So, the plan is to start over again with the J-tube feedings tomorrow, again with a goal of 50cc/hour. We shall see how that goes. I assume he will be discharged again with the PICC line and TPN until he reaches this goal.

I think that we have been spending way to much time in the hospital, as everyone knows us by name. Of course Anthony’s smile has become famous here on the Pediatric floor. Today, Anthony had two impressive student nurses caring for him. Both were first year students, but I could tell they will both become excellent nurses. Gives me some hope for the future of nursing. Tonight, Anthony has a male nurse. Male nurses are becoming more and more common too, which is also good for the profession IMHO.

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Update on Anthony

Apologies for the delay in updating. I’ve been trying to catch up on life after hospitalization. Anthony was discharged from the hospital Tuesday evening, that is the good news. However, he is having trouble tolerating feedings via the j-tube. The doctors were trying to increase his feedings to the goal of 50cc/hour in order to discontinue his TPN and remove the PICC line. But every time they would increase his feedings beyond 20cc/hour Anthony would gag and vomit, even with his g-tube to drainage. So, we decided to continue the TPN at home and gradually – hopefully – increase his feedings. So, that’s were we are at now. The hope is that Anthony’s GI tract will start moving better with time.

We received a pile of letters and statements in the mail from our insurance company concerning Anthony’s recent hospitalizations. Here is a peek at one of the more amusing statements. Ya, I’ll get that check in the mail, LOL! Of course we will not be paying this amount, but I’ll likely spend a lot of time getting this stuff straightened out. Have I mentioned lately that our health care system sucks?

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