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.

Return to the non-fat diet--ugh!

Riley had a follow-up appointment with his cardiologist today, which included an x-ray and an echocardiogram. Dr. Tarnoff said that Riley's heart function is great and that he is doing really well from a cardiac perspective. Unfortunately, the echo showed some "unusual congested vessels." He was certain that what he was seeing was not pulmonary arteries or veins. That could only mean that the congested vessels are lymphatic vessels, which are distended due to lymph fluid from the damaged lymph system. Under normal circumstances, you cannot see lymphatic vessels on an echo.

That sadly means that Riley will resume his non-fat diet, consuming less than 6.6 grams of fat per day. This is extremely frustrating, as we just started allowing him fatty foods, like cheese and peanut butter, less than a week ago. Tarnoff wants him to be on this diet for one month, and we will go back for another follow-up appointment in six weeks, or two weeks after ending the non-fat diet. The appointment will include an x-ray, an echo, an EKG, and blood work. The blood work will mostly be looking at his electrolytes to see if there has been any negative impacts on his system as a result of the massive doses of diuretics.

The vomiting and sensitive gag reflex continues to be a concern to us, although Tarnoff wasn't worried. He has thrown up three times in the past week. Two of those episodes were just minutes after he went to bed, and his entire bed including blankets, pillow, sheets, and jammies had to be changed. Even with the vomiting, the medicine routine seems to be getting better, though, after we switched some of the medicines back to the liquid form. He seemed to like chewing the pills in the hospital, but he seems to prefer the liquids at home. Also, the distraction technique that the Dameron-Drew family recommended seems to be working a bit. When it looks like he's going to be sick or he starts gagging, we start singing loudly and jumping around. He thinks we're nuts, but he probably would have come to that conclusion at some point on his own regardless ;-)

Medicine making Riley sick

Riley has been having a hard time with the meds. We're mixing the worst-tasting ones (digoxin and aldactone) with juice to help them go down. But he still often gags at medicine time. He has also been vomiting regularly - sometimes right after he takes meds, sometimes a while later after he's had something to eat. It's especially frustrating since he still isn't eating much - we hate to lose what little calories he's putting down. Earlier today he threw up his miniscule lunch after drinking some grape juice. His stomach is obviously bothering him quite a bit, sometimes he just wants to lie on the couch. He's apprehensive about eating because he's afraid he's going to throw up.

We talked to a member of Riley's cardiology team but she didn't have much advice. She recommended mixing the medicine (which we've tried) and spreading them out so he's not taking them all at once (which we'll try tonight).

Riley has shown some interest in foods that he can't eat very much of such as string cheese, croutons and pizza. We have one more week of the low fat diet and then we'll have more options to get him eating.

Cardiologist appointment

We visited Riley's cardiologist yesterday. Everything looks as hoped - Riley's blood pressure and sats are normal and his heart sounds good. Dr. Tarnoff changed Riley's medications so that he only gets meds twice a day - morning and evening. The early afternoon dose of lasix was error-prone. Other than that, his prescriptions have not changed. Riley is still on the mega-doses of diuretics. His bed has been soaked every morning from the diuril, lasix and aldactone that he gets each night before he goes to bed. Dr. Tarnoff told us we can give the diuretics a couple of hours earlier to hopefully let him void some of that before he goes to bed.

We are seeing Dr. Tarnoff again in two weeks where we'll have an echo and an x-ray. At that point Riley will have been off the low-fat diet for a few days. In the months to come, Dr. Tarnoff will slowly be reducing the diuretics. At some point he will come off the diuril and aldactone entirely and remain on a low dosage of lasix. We're happy about that - diuril and aldactone are hard to fill. Kaiser doesn't carry diuril - after more than an hour of back-and-forth between us and the pharmacist (while we sat in the pharmacy) we located a different sized dosage at Walgreens in San Carlos. For a while it looked like we would have to drive to South San Francisco or even back to UCSF in rush hour.

The aldactone is also a hassle - it is a compound and the pharmacy can never seem to get it right. When Riley was only a few months old he was on aldactone and we picked up a dose just before a drive to San Luis Obispo for the weekend. When we were more than halfway there, the pharmacy called to tell us they mixed the concentration wrong - Riley would need to take 10 times as much to get the proper dosage. Stuffing 10 ml. of medicine down a newborn's throat wasn't an option so we had to have the medicine re-filled at a local pharmacy in SLO. And on Friday we were told to come back to get the aldactone four hours later, even though the prescriptions had been phoned in the day before.