Anthony is 19 years old today. This is the earliest photo we have of him. He joined our family when he was 6 years old and no photos came with him. His social worker gave me this photo from his file when we adopted him. I love this photo. I bet he was an adorable baby too!
Anthony has become a popular guy at the UMass PICU and I am now the FourSquare “Mayor” of UMass. This means we’ve both been spending way too much time in the hospital. Here is the latest update on Anthony. On Wednesday Anthony began to rally. They had him on several antibiotics and cultured everything imaginable. We are still not sure what was infected, but the docs feel that the PICC line is the most likely culprit. Whatever the case, Anthony is getting better. He started smiling and making noise like the old Anthony.
By Thursday, he looked very good, except for the fact that his airway is quite tenuous. He has a “sweet spot” in his positioning and if he isn’t positioned just right, he goes into respiratory distress, his respirations and pulse go up and his O2 sats go down.
On Friday, we saw even more improvement. His muscle tone is starting to get back to normal. When I say normal, I mean normal for Anthony, which is high tone, due to his CP. But the high muscle tone also seems to improve his airway a bit. At this point, we feel that maybe we can hold off a while on doing a trach, so that he can get his strength back. As we all know, Anthony has been through a lot since December 7th. Now that he is getting better, we don’t want to put him right back in the OR unless we have too. While everyone agrees that Anthony needs a tracheostomy, the doctors have pretty much left the decision of when to trach up to us, so we decided to hold off for as long as we can.
He was no longer sick enough to stay in the PICU and since he was not going to have his surgery right away the question was, should he go to the regular pediatric floor or go home. We felt comfortable taking him home, so he was discharged from the hospital yesterday in “fair” condition.
So, he is home now. We have to watch him and position him very carefully. He is still on antibiotics for a couple more days. His feedings are going well and he seems happy to be home.
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.
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.
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.