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.

Photos and a visit from a basketball player

Before we went home yesterday, Mike Dunleavy from the Golden State Warriors came to visit the kids in the playroom. Riley was getting psyched to meet a real basketball player and said he wanted to prepare some questions. His first question was going to be "can you dunk"? When I asked him what his second question would be he held up a broken Matchbox car and said "what happened to this wheel Basketball Player"?

As it turned out, Riley was pretty engaged in a puzzle when the entourage showed up. The Warriors mascot sat right down to help Riley with his puzzle. He didn't look up for several minutes until I said "Riley, what's that man wearing?" Mike was a really nice guy, he brought books for the kids and autographed a photo for Riley.

We also posted a bunch of photos taken while we were at the hospital. We don't have pictures from when Riley was on ECMO. We couldn't bring ourselves to take them. In retrospect, we wish we had.

http://www.flickr.com/photos/kennethn/sets/72057594119499515/

We're HOME!

Not sure how it happened a day early, but we are home. Riley had a chest x-ray this morning, and all looked good. So the only thing we were waiting for was to have another chest x-ray on Friday morning... so why did we need to spend a perfectly good day at the hospital waiting? Exactly. So, several phone calls, various consultations, an echocardiogram and one EKG later, we were discharged. We thought for sure it would take 24 hours to get our answer about leaving early--ha!

We are scheduled to have an appointment with Riley's pediatrician in Redwood City on Friday morning, along with our x-ray, also in Redwood City.

Also, when we got home and Riley was moving as fast as he could from one toy to the next, he said to me: "You go into the kicthen and cook something." And so I did. He ate two big bowls of very low-fat Annie's macaroni and cheese. It was probably more calories in one meal than he has had in an entire day in weeks. Hooray! More good news to come.

All tubes are out, home Friday(?)

The second chest tube came out at around noon. Riley is really a squirmy worm now - he's flipping around in bed and just about climbing out. We went for a walk in the wagon for the first time without chest tubes. He walked (with help) from the wagon into the playroom. He also wanted to drink from a water fountain so he walked over to it and Dad picked him up. He's still very wobbly while walking, and he fell down a few times, even with assistance. He has the strength in his legs to stay upright but no balance.

Physical therapy came by and played with him at the bedside for more than half an hour. She was encouraged that Riley is able to stand upright while holding onto the bed and cruise back and forth. We'll encourage that type of play when we're home. PT thinks Riley may be walking on his own in as little as two weeks.

And speaking of home, it looks like Friday is the day. There was a chance we'd go home tomorrow, but the cardiologists want to give it another day. He'll have a chest x-ray tomorrow, then first thing on Friday. If everything looks good, we can get out of here. We'll really need to crack the whip because if we miss Friday we're into the weekend, and it's notoriously hard to get out on the weekend. One issue: we'll need Riley's prescriptions transferred to the Kaiser Permanente pharmacy, and that can be difficult. We expect to lean on Riley's own Kaiser cardiologist for help.

At home, it looks like he'll be on a major cocktail - amoxicillin, aldactone, digoxin, lasix, diuril, aspirin and lisinopril (hopefully I didn't forget anything). Riley's cardiologist will try to slowly reduce the diuretics over the weeks and months ahead (aldactone, lasix and diuril). We'll have follow-up x-rays and echos to make sure the fluid hasn't returned. We'll probably see the cardiologist within a week after discharge. Riley's cardiologist doesn't think he'll need the regular blood tests (to look at electrolytes) which is nice. He's also going to modify Riley's drugs so that he only gets them twice a day instead of three times. That's a huge help because Riley is used to morning and evening meds. The doctors have also transitioned Riley to chewable (or pill-formed that Riley chews) for lasix and amoxicillin that we previously gave to Riley in liquid form via syringe.

Friday will be Day 38 in the hospital and we can't wait to be home. The weather report shows sunny and 78 degrees this weekend!