Chest x-ray is worse

We'd hoped to go home today if the chest x-ray showed improvement or at least no change. The cardiologist who looked at Riley this morning said he looked and sounded better and expected the x-ray to show improvement. However, the x-ray taken this morning shows that Riley's effusions have worsened, especially on his right side. They're still not at a stage where chest tubes are being considered, but we're not going home today. Instead they're increasing Riley's lasix dosage again, doubling it to 20mg twice a day. This is the same dosage Riley received before the cardiologist reduced his meds in August. If the x-ray tomorrow shows improvement, we can go home. If it's worse or there is no change, we stay. We're skeptical about getting out of the hospital on a Saturday, but we're holding out hope that things turn around.

It took several hours to reach this diagnosis after the 9:30 x-ray. The cardiologists looked at the film and assumed Riley had been lying down when it was taken, despite my protests (I was standing there with him). So they made us wait for an x-ray technician again who took us back down to radiology where we sat around some more. Eventually another technician came out and told me that the first film was fine and there was no point exposing Riley again unnecessarily. Finally radiology and cardiology spoke and we got to go back upstairs.

The chest effusions are definitely a complication from the Fontan surgery in March. It's possible that the fluid collected because his diuretics can be scaled back too aggressively, because he got sick or a combination of the two. Physically and psychologically Riley is in much better spirits today. He's drinking at a normal rate and has had a few small bites of food. Not much, but considerably more than he ate yesterday.

Last night went much more smoothly, Riley slept soundly and was not interrupted by regular coughing fits. We were awoken by the blood oxygen alarm when Riley's sats dipped into the high 80s. The nurse put Riley on an oxygen cannula and he was very upset about it. The cardiologist came by in the early morning and removed the oxygen monitor. She said that Riley probably had been dipping into the 80s all along and the monitor and oxygen were an unnecessary distraction.

Keep your fingers crossed for the x-ray tomorrow morning.

In better sprits

Despite the fact that Riley has eaten next to nothing today, has drank very little, has continued to have diarrhea and an upset stomach, he has been a bit more cheerful and talkative. This is encouraging. Doctors still don't know really what is going on with him, but he has now had two of the five doses of the precautionary super antibiotic Z-Pak.

Riley had another x-ray this morning that showed no change in the fluid levels in his lungs. Another x-ray is expected tomorrow morning. As for the diarrhea, a stool culture was mentioned, but no lab slip was written up. There is concern that he will become dehydrated again because he isn't drinking much and he is having diarrhea. This could leave to additional IV fluids, but nothing definite at this point.

His oxygen saturation had dipped down to 90 this evening. That's down from 96/97 at the end of August. It was 94/95 on Monday and Tuesday. No one is concerned at this point, but the cardiology team wants to be alerted if it falls into the 80s. All the fluid in his lungs is making it difficult to keep himself as oxygenated.

Last night his cough kept him awake until the wee hours of the morning. I had cardiology paged and expressed my concern for treating the cough. I was told that they do not like to prescribe cough suppressants because coughing is necessary to get the phlegm out, however I feel it's also necessary to sleep. Finally Benadryl was ordered and Riley (along with the rest of us) were able to get four or five hours of sleep. There is already an order in place for Benadryl for Thursday night, which will hopefully help Ken sleep as well. Carter and I headed back to the house because Carter has been sleeping in his stroller (probably not all that comfortable) and he's been waking to nurse frequently (not fun for me either).

Pleural effusions and viruses

Nothing much has changed in this place since we left in May. All of my favorite URLs are still in the family room computer's browser history and familiar faces are everywhere. The food tastes the same and the stains on the floor haven't moved. It's like some miserable Hippocratic Groundhog Day.

The blood tests are back and they have ruled out protein-losing enteropathy and the white blood cell counts don't indicate pneumonia. PLE is a troubling side-effect of the Fontan and pneumonia is very dangerous for asplenics, so we are relieved. As a precautionary measure, they are starting Riley on a five day course of the azithromycin antibiotic, familiar to some as Z-Pak.

Last night they did a cursory echo on Riley which showed pockets of fluid around his lungs. They were described as "not impressive" in size by the cardiologist, and he indicated that the use of chest tubes isn't something they're considering. So they doubled Riley's dosage of lasix in the hope that the fluid will diminish. Recall that Riley's diuretics were reduced significantly after his last cardiology visit. The new dose is twice what he has been getting, but still half of what he got before the medications were reduced. They did a second echo this afternoon and the effusions are larger than they appeared yesterday. It's not clear if that was because they've grown or because the quick echo last night did not give the cardiologists a thorough look. In any case, it's not unusual for them to have increased since Riley has been on IV fluids for dehydration.

Riley's hydration levels have improved. He has been drinking juice and peeing regularly. He has also eaten some crackers and later some pita with hummus. It has now been about 24 hours since he last vomited.

The cardiologist believes that the effusions and illness might be unrelated. Perhaps the fluid has appeared in Riley's chest as a result of the reduced diuretics, and that he just needs a bump up. He indicated that if that was discovered in the clinic, they might just increase his lasix and monitor, or even do nothing and see if they continue to grow. But since Riley is sick, apparently with some sort of virus, the situation calls for closer monitoring. The plan for the next 24 hours is to make sure he is able to eat, drink and pee normally and return to normal spirits. On the cardiac side, they'll do another x-ray tomorrow morning to see if the effusions have diminished thanks to the lasix, or at least stabilized. If the effusions are worse, more diuretics will be given or potentially chest tubes inserted. We all want to avoid the latter since "waiting for chest tubes to drain" naturally equates to "six weeks of our damn lives we'll want to get back".

Nobody is speculating about when we might get to go home. I think we need to see the following happen before that's a possibility - (1) eating and drinking normally, (2) normal potty activity, (3) reduced/eliminated pleural effusions, and (4) a much more energetic Riley. We are making great progress on #1 and #2. As for #4, Riley is in better spirits today - playing with cars and watching baseball. But he's still obviously not himself. Earlier he said "I don't like it to be here in the hospital". He also immediately degenerates into a crying state whenever something is amiss - he slides down his bed, he drops a car, etc. For his part, Carter is fussy but adjusting. Suzanne went back to the house for a better stroller so Carter can sleep in something more comfortable than his car seat tonight.

We'll have more updates in the morning once we have results from the x-ray. The doctors are slow to see us because we're in the normal pediatric ward but are being monitored by pediatric cardiology. The cardiologists don't make their way down to us until they've rounded in the PICU and step-down units upstairs. That said, the lack of constant medical attention and electronic monitoring is a nice reminder to us all that we're just tourists this time around and will hopefully be home soon.

Riley admitted to UCSF

A lingering cough turned worse Tuesday with vomiting and severe exhaustion (ie: I had to carry him to the bathroom, etc.). In the afternoon, I took Riley to the doctor's office, and that led to respiratory therapy with a mist dose of albuterol, an x-ray, being admitted to the ER complete with lots of blood work (and three unsuccessful sticks), an ambulance ride to San Francisco, and being admitted to UCSF. It is unclear if this a heart-related problem, early pneumonia, or a result of too drastic a change in his medications at the end of August. It's also unclear how long we should expect to be here.

There are pockets of fluid under both lungs. There aren't any current plans to drain them, but the cardiologist mentioned that was a possibility if they don't clear up on their own. They stopped the lasix to prevent any additional dehydration, and right now he's getting IV fluids to rehydrate him. This is a bit of a slippery slope because the extra fluids may increase the fluid pockets in his lungs, but he needs fluid to not be dehydrated.

It is very emotional to be back here just a couple of months after being discharged.

We are the lucky ones

During the six weeks we spent in the hospital, many families came and went. But there was one other family--Maverick's family--who arrived six days before us and stayed another three weeks after we left. Our immediate and extended families and friends spent hours and days and weeks together in the hospital waiting room. We cried together, listened to each other, and breathed the same air. Our lives are permanently intertwined because of the experiences we shared at that hospital.

Maverick's mom and I talked on the phone a couple of weeks before Carter was born. They had relocated from the East Bay to Burlingame and we had all hoped to get together, but then life got in the way. There was a message on my machine last Friday from Maverick's mom letting us know that Maverick died on Labor Day. Maverick didn't die from a complication with his heart surgery. Rather, he developed endocarditis (an infection of the heart's valves or its inner lining caused by bacteria or fungi that enter the bloodstream and settle on the inside of the heart). He had the fungal variety. It caused an aneurysm on his pulmonary artery. He developed a terrible cough and he was hospitalized for another month in June. Eventually the aneurysm burst, he started vomiting blood, and then he died.

This Saturday would have been Maverick's first birthday.

Even though the hospital was only a few months back, it now seems like a terrible dream. It's so vivid at times and so fuzzy all at the same time. It's amazing how far we've come from those desperate and dark days in the PCICU, and all I can do it is just marvel at our son and be ever so grateful that he is still a part of our family. He still has so much living to do. With all of the horrible things we've been through and the sadness we still carry, sometimes it's hard to believe that we are the lucky ones.

Riley video

Here's a little video that demonstrates how much energy Riley has since his surgery. Enjoy.

Big cut in meds

Riley had an appointment with his cardiologist yesterday and Riley is doing great. The best news is that Riley's diuretics have been drastically reduced. His aldactone has been discontinued altogether; lasix has been cut back by 75 percent--10 milligrams once a day instead of 20 milligrams twice a day; digoxin is cut in half to one dose in the morning. This has streamlined his medicine regime. Instead of medicine three times a day--8 am, 5 pm, and 8 pm--he now gets medicine just twice a day. And the only nighttime medicine is his amoxicillin.

This is the first time that Riley does not take diuretics in the evening. It will make afternoon/evening outings much more pleasant because Riley won't need to pee every half an hour. We're also hoping it will make overnight waking to use the potty less frequent (although he has learned that yelling he needs to pee will bring Mommy or Daddy or Grampy back in for more conversation and goodnight kisses). Sometimes these kids are too smart for their own good ;-)

Dr. Tarnoff said we should expect Riley's oxygen saturation to drop over time from the high 90s to the high 80s to low 90s as he grows. He also said that about 20 percent of the time, single ventricle kids who are post-Fontan will develop new collateral veins, as the body tries to adapt to the dropping oxygen saturation. Riley had several collateral veins coiled in the cath lab before his Fontan surgery. Nineteen platinum coils were used to block the veins.

His energy level continues to impress us. Prior to surgery he rarely ran. Now he rarely walks. He has also gained back most of the weight he lost during his hospitalization. Yesterday he weighed in at 33.6 pounds (up from 28 pounds when he was discharged from UCSF at the end of April). Other than that, he has become a typical three year old, for better or for worse.

Welcome Riley's baby brother Carter

Carter MacLeod Norton, a healthy boy, born on July 15th weighing 7 lb. 13 oz., 21 inches in length. We have pictures!

Good news from the cardiologist

We had an EKG, echocardiogram and chest x-ray today followed by a visit with the cardiologist. Riley did great with the echo and the x-ray but was pretty unhappy with the EKG (as normal). He is really getting comfortable with Doug, the echo tech. Dr. Tarnoff said everything looks good - there is no sign of fluid or chylous, which means Riley can stay on the regular diet. Yippee!

He also lowered Riley's diuretics - reduced his lasix by 1/3rd, reduced his aldactone by 1/3rd and his diuril by half. Furthermore, we'll be discontinuing the diuril completely in a week. That should make for a more comfortable night's sleep and dry sheets (Riley is completely potty trained now during the day but often wakes up wet in the middle of the night asking to use the potty). We'll be seeing Dr. Tarnoff again in two months.

Normal diet resumes

Four painfully unpalatable weeks later, Riley is able to eat fat again. He has been asking for cheese 37 times a day. I can't blame the kid. We have been trying to limit his intake of cheese because it can be hard on the digestive track, and we want to return to a regular diet slowly so that he doesn't sick by shocking his system with too much fat.

Other than that, Riley has been doing great. He seems to have lots of energy, although his stamina is still limited. But he is running and playing and being his regular cheerful self, which is so great to see. We were worried that it would take six months for him to get back to "normal," but he has recovered so much more quickly that we ever anticipated.

There are still some sutures working their way out of his chest scar, but his cardiologist Dr. Tarnoff says that's normal and it will just take time. He has another appointment with Tarnoff in two weeks. He will have some blood work done before hand to check to see if his electrolytes have been negatively impacted as a result of the heavy doses of diuretics. He will also have another echocardiogram and EKG. The echo revealed the "distended" lymphatic vessels just before his last visit, and we are crossing our fingers that they are back to normal so that he can continue to eat whatever he wants.

Finally, he is still very thin. He was almost 35 pounds when he was admitted to UCSF for surgery. He is now just over 28 pounds. Hopefully having access to more of his favorite, high calorie foods will help him bulk up a bit again.