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!

One down, one to go

Riley's right chest tube was removed earlier today. He was very uncomfortable during the quick procedure, but was just fine moments after. Fortunately they did not need to administer an IV to provide him with the adequate sedatives. Instead he got a dose of something to make him forget and some Tylenol with Codeine for discomfort. Sadly, the left chest tube is still slowly draining. It won't be coming out today or tomorrow. We are hoping that it will come out Wednesday, but we won't know if that is possible until we get to Wednesday--it all depends on when it stops draining, and no one can predict when that will happen. Once it is out, we are hoping that we'll be able to go home the following day, but we're not counting on it.

This means that Riley will remain on heavy doses of diuretics--Lasix three times a day, Diuril twice a day, and Aldactone to help pressure the potassium in his system.

More setbacks

Last night Riley's left chest tube put out a surprising 45cc of fluid in 2.5 hours. That's significantly more than he's put out in an entire day. As of right now, it's up to 70cc in the past 16 hours. The CT surgical team is putting him back on the Diuril. Recall that the Diuril was discontinued three days ago by the cardiology team, apparently without consulting the surgical team (or without members of the surgical team communicating to each other). The surgical team doesn't want to muck with something that's working. If the diuretics are keeping him dry, don't change anything. The hope is that the tubes could come out, the diuretics would keep him dry and in a week or so the fluid cavities in his chest would "seal off" allowing them to slowly wean him off of the extra diuretic. So no tubes are coming out today.

If the right tube continues to have no drainage, it will come out tomorrow. They will need to give Riley an IV to administer some sedatives. If (and it's a big if) the left chest tube stops draining (basically no more than another 15-20cc) they'll consider pulling that one tomorrow as well. However, the tube has already put out another 10cc since the doctor said that, so it would have to be 10cc or less in the next 24 hours, which doesn't seem likely.

Also, Riley threw up last night after eating his dinner. He had to be talked into taking the last few bites. From now on, we're not going to try to force him to eat. He won't tell us if he's in pain or feeling stomach distress. At this point, we'll give him as much as he wants when he's hungry and stop forcing the issue if he's not. Apparently GI distress is a common side effect in post-Fontan patients. They're adjusting to the increased pressures in the lower half of their bodies.

Confusion and delay

Once again there was confusion and delay surrounding the path that Riley's medical care should take. For days we have been hearing about how we need to reduce the diuretics (and finally did) to see if chest output would increase as a result. Today, however, we were told that we are not doing that. Instead he will stay on the three large doses of diuretics per day. Apparently the surgical team did not communicate with the cardiology team as to the best course of action. After we heard about this new plan (which wasn't part of the discussion during rounds), there was a heated pow-wow because others didn't know about it or agree with it. The surgical team has the final say. Sadly, if Riley had not received fewer diuretics in the previous days, his tubes would have been removed today.

The surgical team who made the decision said that if the chest output increased as a result of the lower diuretics, then putting him back on the diuretics would not necessarily have had any impact--as if we lost our window of opportunity for them to work. Anyway, after the tubes are pulled, Riley will continue to be monitored closely with x-rays and blood samples for at least a week or more. The x-rays will show if fluid is pooling under his lungs and the blood draws will determine if the large quantities of diuretics are impacting the levels of sodium, chloride, and potassium in his system. We're not sure if this monitoring can be done on an out-patient basis. Hopefully if the tubes come out tomorrow, we'll get a better idea of when we'll get to go home.

While Riley's spirits continue to improve and he (thankfully) seems to be his cheerful self, he told me that he was sad today. When I pressed him as to why he was sad, he said, "because I want to go home." It was really hard for me not to cry. I want him to come home too. He's been such a trooper through all of this--blood draws, chest tubes, round-the-clock temperature and blood pressure readings, constant pain, crappy non-fat food, limited mobility and energy, stitches, gauze and cream applications, large quantities of new medicines, and constant poking and probing--and now he's had enough. He just started talking about home a couple of days ago and he must be feeling that it's time to get out of that place. There's nothing we'd like more.

Walking

The chest tubes didn't put out any fluid overnight. Riley was given another chest x-ray this morning and the doctors will check to make sure everything looks good. Yesterday they discontinued the Diuril and today they'll back Riley down to two doses of Lasix instead of three. If everything goes well, they might remove the chest tubes tomorrow. In that case, we'd probably get to go home on Monday. Nobody goes home on Sundays and they'll want to monitor him an extra day anyway. Of course, if the chest tube output picks up now that they've reduced the diuretics, all bets are off. Same deal if the chest x-ray shows backed up fluid.

Two days ago Riley made himself a necklace in the playroom with letters spelling "Riley Norton." He picked out and arranged the letters himself and even threaded them (all we did was tie the knot). Last night he decided he wanted to go to the playroom again to make a necklace for Daddy. He also made one for Mommy.

Just now we came back down to the playroom where Riley wanted to play with cars. However, another kid was playing with them so Riley sat down to use playdough. When he noticed the other kid had finished with the cars he said "I can play with cars now" and before he realized it he'd stepped off his chair and was standing. I held his hands while he walked ten feet to the cars where he promptly sat down on the floor and began playing. More evidence that Riley is physically capable of more than he's mentally prepared to do. Hopefully when those tubes come out we'll make good progress.

Another cath possible

We've moved to the private room, which has much more space for everyone to stretch out. Now we just hope we don't get bumped.

Riley's chest tube output yesterday totaled 60cc, which is down about 50% from the previous day. The cardiologists are looking for them to pretty much dry up (into the single digits) before they consider pulling the tubes.

Tomorrow the cardiologists will try to reduce the amount of diuretics Riley is getting to a maintenance level (what he'll get when he's home). They want to keep a close eye on the chest tube outputs after the medication is reduced. If the output goes up, they'll consider sending him back up to the cath lab to make sure there isn't an anatomical explanation for the drainage - blockage, pressure problems, or something worse. Right now, there's no indication that the drainage will pick up, and the echocardiogram yesterday looked good. But it's a possibility we need to be prepared for. Obviously we want to avoid a third cath in six weeks - there are considerable risks associated with the cath not to mention the general anesthesia.

PICC line accidentally yanked

Sometime during the night Riley accidentally pulled out his PICC line. This is the line in Riley's neck that nurses have been using to draw blood as well as to push IV fluids through. Fortunately, there wasn't a lot of bleeding. This morning, his nurse clipped the stitches and removed it completely. They will not put in a new one, but they will need to poke him for blood draws on Friday (he ususally gets blood drawn daily, but since they have to stick him, they will wait an extra day).

His chest tubes continue to drain and clots continue to be an issue. There was very little drainage from his right side overnight. Once a clot was dislodged, drainage resumed. We are still trending downward, but his output continues to be more than they would like to see. The question is whether the decreased drainage is a result of healing in the chest cavity or if it is a result of the extra diuretics that were added to his medicine regime in an effort to help dry him up. In another day or two, they will decrease his diuretics to a lower level (the dose that he'll get at home), and see if the drainage picks up or continues to trend downward.

We are likely moving to another room this afternoon. We have been in a shared room in the step-down unit for three weeks. And we have had new roommates on a regular basis--some are quit noisy. We are hopefully moving to a private room across the hall. This is a bit of a craps shoot. The private room is usually reserved for patients that need to be isolated, so if a special case comes in, we could get bumped to the main bay next to the nurses station. We've decided to take that risk in an effort to have a little peace and quiet.

Physical therapy

The physical therapist came by this morning to see Riley. We haven't had too many positive experiences with her, Riley is usually grumpy. A few days ago she took us to the PT playroom and Riley was very frustrated and disappointed that it wasn't the "real" playroom. He wasn't happy to see her this morning but she brought him a bunch of Matchbox cars and told him she'd be back. That immediately put her on his good side and after some time in the playroom he asked to see her again (and to go to her "special playroom").

She spent about 20 minutes with him. At first he said he wanted to stand, but then he changed his mind. But she got him sitting up in the wagon on his own and reaching to play with puzzles and a magnetic pad. His fine motor skills are very good, almost back to where they were before surgery. It appears that he's capable of doing more than what he wants to do. He doesn't want to sit up, but yet he was doing a fine job of it when he didn't realize he was doing it. Tomorrow she's going to come see him again and we'll try standing.

No real updates on the medical front. The nurse practitioner came by today and is pleased with the reduction in drainage. There was about 25-50cc from each tube this morning. She wants to see 15-20cc total before they consider removing the tubes. Once the tubes are out, we'll probably go home the following day. So even though we're headed in the right direction, we're still 10X where we need to be.

Chest x-ray looks good

The doctor cleaned out clots from both of Riley's drain tubes. These silly things are about the size of a piece of spaghetti and they're constantly getting twisted and occluded. Drainage today has been very low so a chest x-ray was ordered. The x-ray looks very good - there's very little fluid remaining and what's there seems to be draining properly. If Riley hadn't had the problems he's had, they'd remove his chest tubes tomorrow. But given our ups and downs, they'll wait until at least Wednesday. Nobody's said anything about going home yet, but we imagine we'd go home no more than 2 or 3 days after the tubes come out.

Riley won't need the IVIG mentioned earlier. To counter our excitement about possibly going home a different doctor told us they'll look again at IVIG "next week."

Hungry, happy boy!

Last night and so far today Riley has been hungry, eating, and keeping things down. This has been incredibly encouraging to all of us. We imagine the more he eats, the better he will feel. For lunch, he had almost three small bowls of pasta with homemade sauce (courtesy of Audrey). When he was on his second bowl, he announced, "When I'm done with this, you can bring me more." And I was happy to. He ate all of that pasta after he ate half of an english cucumber and several bites of apple. Sure the cucumber and apple don't have tons of calories, but anything to stretch out his tummy and whatever makes him happy. We didn't have to keep telling him to "take a bite." He happily ate without nagging, which is nice for everyone.

He is still getting some IV replacements. He got some chloride earlier today and there is talk of him getting more IVIG (Intra Venous Immune Globulin)--immune boosting antibodies--tomorrow.

A better day

Riley had a good day today. He ate well and was in generally good spirits. He talked to his Grammy on the phone, went to the playroom, played with Play-Do and his cars. We watched the Giants game on TV and Riley chimed in with a few "Beat LA!" chants. At one point he talked about the things he'd like to do when he gets home - eat lunch with the family, play baseball with Dad and play with cars. It's the first time we've heard him talk about leaving the hospital. It's nice that he realizes we won't be here forever.

His drains are still putting out fluid - about 150cc total during the day.

Procedure is finished

They're done and Riley is recovering in the ICU. He's still completely out and should sleep for another hour or so. They gave him more sedatives this time than last so he will sleep longer.

They inserted a new pigtail drain into his left chest and it immediately emptied 150cc. They were able to remove a clot from his right drain and it lost about 100cc right away. He now has one drain in each chest and corresponding drainage boxes attached (they measure about 16 inches by 10 inches). The nurse practitioner removed all of the sutures she could find - on the left side of his neck (from the ECMO), in his groin and in his stomach (from the Tenkoff).

There's an unexplained nasty red mark on his little toe. It looks like he was pinched or something was crushing his foot. Nobody seems to be able to explain how that happened.

Tubes going back in

After Riley's first surgery in 2003 we learned a basic rule of hospitalization: tubes going out = good; tubes going in = bad. Which means we're headed in the wrong direction again today. Overnight Riley received a potassium drip and is now on a drip to replenish his fluids and electrolytes. Riley is currently NPO (nothing by mouth, or nil per os for you Latin scholars). He can't eat or drink anything because they're planning to sedate him and put a left pigtail chest tube back in tonight between 4 and 6 pm. There are also questions about the right pigtail chest tube, which hasn't been draining for 24 hours despite x-ray indications of additional fluid. They're going to try to flush that drain to get it working in a few hours. If they can't, I expect they'll try to replace that drain as well while Riley is out.

It's very frustrating for all involved. We've been walking on a treadmill and now it feels like we've stopped and are slowly moving backwards. The discomfort of two pigtail drains - not to mention the immobility associated with two VCR-sized boxes attached to your body - is really going to set the healing process back. Riley's body already seems to be wasting away as it is. We need to get him sitting up, standing and walking, but that won't be happening with these drains.

On the plus side (we take our positives when we can get them) the doctors will remove the stitches in Riley's neck from the ECMO machine. That wound has really been irritating the kid and he touches and picks at it regularly.

Another drainage tube likely

An x-ray showed pockets of fluid building up under both of Riley's lungs. A clot was removed from the drain in the right side of his chest. Hopefully the removal of the clot will allow that pocket to drain properly. A follow-up echo confirmed that there is fluid building up under both lungs. While the pocket of fluid under his left lung didn't appear as significant as it looked on the x-ray, it seems likely that he will have a pigtail drain reinserted into his left chest to help drainage there (This left drain was removed prematurely because it had become dislodged and wasn't functioning). Another chest x-ray and echo on Friday will finalize things.

Another drainage tube will make his physical therapy that much more difficult, as he will have painful drains attached to cumbersome boxes on either side of his chest. This is a big step backwards. Instead of getting closer to discharge, we are getting farther away. Riley has been a champ, working hard to keep his spirits up during this long ordeal. However, every echo, x-ray, and procedure seems to take a toll on his demeanor. He has been through so much already. This setback will be disheartening for all of us.

Here are some of the pictures from Riley's hospital stay.

More albumen, vomiting

The drain continues to slow, although we aren't sure if the fluid is decreasing or if there is another clot in the pigtail drain. A chest x-ray has been ordered to see how that progress is going. Also his protein and albumen levels are still low, so another bolus of albumen was given this morning. We feel discouraged by this: a few days ago we weren't getting any replacements and now he's gotten them two days in a row.

This frustration has been exacerbated by the fact that Riley has been vomiting. It takes so much effort to get him to eat, only to have him throw it all back up. Sometimes this is brought on by the Tylenol (it always makes him gag--who knows why), and sometimes it's just random. He has vomited three times since midnight. So far no talk of hooking him up to IV nutrition, but we suspect if he doesn't start keeping food down, we'll be heading that direction.

He continues to be extremely weak. Physical therapy has been in to see him two days in a row and hopefully we can get to see them more frequently. Getting him up into a chair for five minutes exhausts him and he starts sweating. We get him back into bed and he falls asleep. If the vomiting cycle continues, he's not going to build up any energy to help him progress physically.

Protein, albumen low--getting replacements

Riley is still draining from his new pigtail drain. It has slowed from the initial pocket, but it is still steady. In addition, doctors noticed a dip in his protein and albumen levels. As a result, he was given 60 milliliters of albumen this morning in an effort to bump his levels up.

Physical therapy has been slow. Getting him out of bed and into a chair today was a major feat. He is so weak and he felt especially light to me. We are grateful that Riley had some reserves as far as weight goes. But it's hard to watch him wither away. We will keep working on it, but he needs to eat in order to have energy, and his eating is still minimal as well. The same plate of mashed (unsalted, unbuttered) potatoes and steamed broccoli arrives at every lunch. He does not eat a single bite. Dinner is some plain, grilled tofu and mushy carrots. No wonder he's not eating much. I'm going to get a jar of fat-free tomato sauce from the grocery store and hopefully the kitchen can manage some plain pasta. I'm sure he'd like a little variety. Fortunately, we found some non-fat bleu cheese dressing that he like with raw carrots and cucumber. Sadly it's not very caloric. He's also been eating the tofu hotdogs that I've brought in with ketchup.

350+ milliliters in first hour

It was a quick and relatively painless sedation. Riley was moved back over to the PCICU for the procedure (adding a new drainage outlet from right chest) around 6pm and the sedation started about half an hour later. Within minutes he was smiling at the anesthesiologist and cross-eyed. Fortunately the sedative they use also has an amnesia-like quality so he won't remember much of the procedure.

Ken, Grampy, and I took the opportunity to head out for a group meal--we have not left the hospital together in nearly three weeks. We were joined soon after by friends who had stopped in to see us, but didn't know that we'd stepped out. Less than an hour later, we got a call that Riley was waking up and asking for us. Ken rushed back to be with him and I waddled as fast as I could before Braxton-Hicks-type cramps slowed me down.

Within the first hour, the drainage had reached 350 milliliters (or nearly 12 ounces), which was more than double what was estimated after the echo earlier today. Hopefully Riley is breathing a bit easier now that his lung can expand without so much fluid crushing it. Grampy is with Riley overnight while Ken and I made our way home for some sleep in our own bed. We're so grateful to have an extra person to rotate overnight duties with.

Drainage tube going back in

We were skeptical when the pigtail drainage tube was pulled last night prematurely. Basically slowed drainage led to an x-ray, which showed that the tube had slipped (see previous post). This morning another x-ray and an echo showed that there was a large pocket of fluid under his right lung. (The pigtail was originally inserted to drain fluid under his left lung.) This could explain why there would be little to no drainage until he was moving or sitting in a new position.

Anyway, it was great to be able to move him around without the VCR-sized box of fluid while it lasted. We even got him into a chair coloring and playing with cars this morning--has hasn't been up to playing much at all. And he was so exhausted from sitting up in his chair that he fell asleep during this morning's echo and is still sleeping more than two hours later. He isn't allowed to have any food or drink for six hours before sedation, so they will start the procedure after shift-change tonight--around 8 pm. They need to wait because I was painstakingly getting him to eat bites of banana and applesauce for more than an hour before the echo. Ack. This pocket of fluid (estimated to be 150 milliliters or more) could explain why his oxygen saturation has been dipping into the high 70s and low 80s at times, when it had been steady in the low- to mid-90s. It's basically squishing his lung, not allowing it to fully expand.

So it seems that we'll be here for at least another week. Once the tube is back in place, they will leave it there for several days even if it tapers off. They want to be really sure that it's done draining before they pull it. Then they will likely wait another day or two once the drain is out to make sure that no additional fluid has built up.

Last chest tube coming out

The congestion in Riley's chest returned this afternoon after two clear days. The pigtail drain in his left chest continues to put off fluid, but it's trending downward. The doctors ordered a chest x-ray to get to the source of the congestion. It turns out the pigtail drain has slipped out and is no longer functioning properly. They've decided to just pull it out in about an hour, after Riley is sedated. Tomorrow morning they'll do another chest x-ray and if there is more fluid building up, they'll need to consider putting a new drain in. Hopefully that won't be needed but we won't know until tomorrow. This might turn out to be a nice way to force the final step in the going home process if we're lucky.

Dad had night duty last night and Riley desatted twice into the high seventies. The lowest oxygen saturation I saw was 77%. Riley also had the sweaty head again and his pillow was drenched. The morphine withdrawal explanation doesn't seem to carry a lot of weight with most of the medical professionals. They want to keep watching him when he sweats like that. He has not shown any other indication that the sweating is heart-related - all of his other vitals look fine. It's possible that Riley's body is using his sweat glands to release fluids in response to the lasix. The desaturation wasn't fully explained. It never lasted for more than a few minutes and his sats would be back up into the low 90s.

Finally, we noticed a rash on Riley's belly this evening after the chest x-ray. The resident says it is possibly a reaction to medication or a common virus. It sure looks a lot like the viral rash Riley had in early March (the one that caused his surgery to be postponed). If it is a virus, there's nothing they can do about it.

One-and-a-half steps forward, one step back

Riley had been eating the past two days. He wasn't eating much, but a little bit was a big improvement over not eating at all. But today, all bets were off. Breakfast: a couple of bites of tofu left over from dinner the night before. Lunch: nothing. Dinner: five bites of cottage cheese.

His chylothorax has him on a restricted diet which allows him 6.6 grams of fat per day. This is very frustrating because he sometimes asks for food--food that he isn't allowed to eat. He has asked for pizza a couple of times. He's also asked for cheddar cheese. Part of his lunch today was cooked carrots. When I told him there were carrots (he probably thought they were raw), he asked for bleu cheese to dunk them in.

Can't say I blame him for not being interested in much of what the kitchen brings to him. Scoop of white rice. Pile of overcooked carrots. No salt or butter on either. Side of applesauce. The frustrating part is that he isn't even interested in eating stuff he normally likes at home, like fresh fruit. No interest in plums, strawberries, bananas or other good stuff.

He's never going to get stronger if he doesn't start eating more regularly. He is now able to lift up his head a bit. But he is still unable to sit up unassisted or stand. Ken has propped him up to a standing position, but him legs can only handle a second or two. Plus, the longer he is immobile, the more muscle tone he will lose.

Much improved

Riley's spirits have come around. Yesterday morning we took him down to the playroom and he started talking more and we even got a few smiles. That seemed to break his shell and he's been much more talkative and happy. He's been playing with his cars and eating. He wants to eat by himself so we move the table over his bed and let him handle his meals on his own. As I type this Riley and Suzanne came by the parent room in the red wagon. He just asked to go for a ride on the elevator.

I stayed overnight with Riley and he got some good sleep. He'd gotten less than four hours sleep in the previous 24 hours. At 4:30am he woke up and said "Daddy, I want to go to the playroom now and see cars."

He has just the one remaining pigtail drain in his left chest. The drainage had come down considerably but yesterday morning he pumped out over 250cc of fluid so there must have been a clot. That happened just after the doctors talked about pulling it. He's still draining a good volume so it won't be coming out today. Doctors are looking for drainage of less than a tenth of what he's putting out now before they consider yanking it. Sometimes the drainage drops slowly, other times it will just come down quickly, so there's no predicting when it will happen. Fortunately this drain is the one thing standing between us going home. Once it's pulled, we'll probably be out within 24 hours. However, the doctors have cautioned us that Fontan patients can sometimes drain for a long time, some have gone for several months. Riley's cardiologist predicts that we'll go home "sometime this weekend or shortly thereafter" but we're not holding our breath. We also know that "real soon" is UCSF code for "before Thanksgiving."

We're thrilled to see the old Riley again and are enjoying hanging out with him, even if he's often uncomfortable. He is on the meds he'll have at home - aspirin, lisinopril, lasix, digoxin and amoxicillin - and he's also getting tylenol with codeine ("tyco") for discomfort. He's not taking anything intravenously but they're keeping the PICC line open and flushed.

There probably won't be much to report until the drain is pulled but we'll keep you all up to date.

Long, sleepless night

I don't know how the whole night can disappear with so little sleep. Actually, it's all the stuff that nurses need to do overnight that make sleeping hard. Poor Riley didn't fall asleep until after 11pm. Then he was woken up at 2:30am so that labs (blood) could be drawn from the PICC line in his neck. Unfortunately. the PICC line wasn't functioning properly--probably a clot in the line somewhere. But it took 15 minutes of screwing around with it, along with a temp reading and a blood pressure before Riley was able to relax again. I imagine, though, that it's hard for him to ever fully relax because he never knows when another doctor or nurse will come in to poke at him. There was something else at 4am, but I can't remember what. And then at 5:30am, the nurse has some kind of solution to put in the PICC line to disolve any clot. Then at 6:15am, she came in to see if the clot was disolved and to draw labs. Fortunately, it worked, but it was a hard night. Ken arrived soon after, and I'm on my way out to get a bit of sleep.

There was some progress made with eating yesterday and Riley did get out for a ride in the red wagon, but Ken will hopefully update you all a bit later. I need to head to the apartment for a little sleep. Thanks to Marcy and Jeff for letting us monopolize their apartment!

More tubes are out

The nurse practitioner removed the two remaining bulb chest tubes and the pacer wires today. Riley still has the pigtail drain in his left chest and the PICC line in his neck, but other than that he's tube- and drip-free. They used three nurses to pull things quickly and all at once, we got away with just one big "OUCH". Unfortunately the pigtail comes with the VCR-sized drainage box so moving him is still difficult. This afternoon we're going to try to pack him into a red wagon and take him down to the child life room. We're hoping that a change of pace will improve his spirits. Further, he should be feeling more comfortable now that those tubes are out.

Emotionally, Riley is the same. We still haven't seen him smile and he doesn't speak much. He did ask for Mom to "read a book" when he was sedated earlier for the chest tubes. He also isn't eating much - he has hardly eaten anything today or yesterday. We have been spending time with the child life specialist since we're fresh out of ideas. Just talking to him as if he is the "old" Riley doesn't seem to be getting us anywhere.

Update on blisters and sweating

We never posted an update on the water blisters and sweating. Late last night the ICU fellow came by and looked at Riley. He didn't have a conclusive answer for the blisters but suspected it might be heat rash, a virus or some allergic reaction to the tape. None of these explanations made perfect sense so he sent a venous gas and a lactate test to make sure it was nothing heart related. Everything looked good so the decision was to just leave it and let it heal. His face isn't as red today but the blisters are still there.

Riley hasn't been having the sweats at all today, and coincidentally he also went back on the morphine. The doctors seemed to like our guess that the sweating might have something to do with morphine withdrawal. So there you have it.

Tenkoff, central line removed; PICC line added

Early this morning we cut Riley off from all food and drink in preparation for his sedation associated with removing his Tenkoff drain and central femoral (groin) line. Hard to believe that Tenkoff was removed, considering it drained nearly two liters in a single day just a week or so ago. It was also considered a factor that his Fontan operation wasn't working. But drainage tapered off and doctors felt it was okay to remove. Riley still has three other drains--two bulb drains and one pigtail. They wanted to close up the femoral line because it has a high infection rate, considering it's located inside his diaper.

Since access is still needed to administer meds and to draw blood, a PICC (Peripherally Inserted Central Catheter) line was added. PICC lines can be in place for several weeks and have a low infection rate. The long plastic tube is deep inside Riley's body, which should make giving meds less painful. We believe he's been avoiding telling us that he hurts because administerings meds though the IV in his wrist stings. While he still won't like getting meds (negative association of nurses in general), he shouldn't have any physical discomfort while IV meds are going in. The plan was to place the line in an arm or leg, but because his veins are so tiny, they could not get it to work. As a result the line ended up sewn into his neck. So he'll have a scar on the other side of his neck to rival the one from ECMO.

Unexplained sweating, blisters

Just before I was about to head to the apartment for a much-deserved night of sleep (I was here overnight last night), I touched Riley's face and it felt very bumpy. We turned up the lights and there are tiny blisters all over his face, neck, chest, and underarms. The doctor on call was paged, he examined Riley, and now we wait. Apparently, he wants the fellow to take a look, but we aren't sure if the fellow will be in sometime in the next five minutes or five hours.

This blistery turn followed a day when mom and dad sensed things weren't right. First, Riley's resting heartrate has jumped between 30 and 40 beats per minute to 110. Second, he has been sweating excessively all day long. I have changed his pillow several times because he keep soaking through, leaving a large sweat mark. Thrid, his cheeks have also been very red today. He has not been red like this since before surgery. All of this together makes us very nervous. But so far no answers, just questions. So we wait and hope the boy will at least get a couple of hours of much needed rest, even if his parents don't.

Still not himself

Riley is still withdrawn but we're seeing some slight improvements. He is now making eye contact with Mom and Dad, but saying very little. We are trying to get the nurses to batch all of their procedures together so he will be left alone as much as possible. An hour ago they gave him his oral medicines (digoxin, amoxicillin and tylenol), IV meds (lasix), took his vitals, emptied his drains and changed his dressings and now they should be able to leave him alone for several hours. We're also going to talk to the child life specialist again today about ways to make him feel more like himself. We didn't bother with the birthday celebrations yesterday since he wasn't at all interested. The hospital brought by cake, a big banner and a present but we've stashed it away until he feels better. His birthday celebration can wait until he's ready.

A few days ago Suzanne experienced a scare when Riley's uncovered incision popped open after he was picking at it. He wasn't in any danger but it certainly isn't pretty to look at. Fortunately the underlying bone is wired shut. They just leave the wound open to treat, inserting wet dressings into the wound every 12 hours and covering with a light bandage. As a precautionary measure they put him on some Vancomycin to conquer staphylococcus (staph infection) although there are no visual signs of infection and the wound looks very clean. If the cultures come back clean they'll discontinue the Vancomycin since it can have kidney-related side effects.

Riley spent a few hours in a special chair yesterday and Saturday, and will spend some more time in it today. Getting him up and moving about is critical to drainage and a good recovery. He's in a very weakened state and has a hard time keeping his head up so the physical therapist will come by today with some more recommendations. It's difficult to get him sitting up with the pigtail drain in place. It's attached to a drainage box about the size of a cheap VCR. They're looking at more mobile replacements.

Yesterday we noticed that the pigtail drainage was taking on a more milky consistency. We'd been watching for this as a sign of chylous fluid since Riley had eaten some foods with fats (milk, french fries and crackers). Sure enough, it looks like Riley does have chylothorax as anticipated. That means we need to put him on a low-fat diet for the next six weeks until his lymph nodes can heal. Given all that we've been through, chylothorax isn't all that bad.

Happy birthday and racing for Riley

Riley is still feeling very sad and is barely interacting with us. His language has regressed and he pretty much just says "no" and "I don't want it." We talked to the child life counselor, and she says this is a normal coping mechanism. Kids will often regress in different ways. Since Riley is so vocal, he knows that communication is one thing he can control and he's withholding it. These will be the hardest days for Riley who doesn't understand where he is or why he's being kept here. I stayed with him overnight and he slept a lot, but woke up crying several times saying "no, no, no." His vocabulary is slightly more extensive today, at one point he said "I want to say bye-bye" and "I want to go home."

On the plus side, he's drinking a lot of juice and eating crackers, french fries and cookies. When asked if he wants anything he just says "no" so we've stopped asking - he'll usually take what we offer. The child life team brought a Happy Birthday banner, cake and a present. He's not into it so we'll try again later, or tomorrow if necessary. His birthday can wait until he's feeling better.

The Ronde van Brisbeen was this weekend, one of the biggest bike races on my team's calendar and I wish I could have raced with them. The guys have been extremely supportive and a lot of them raced in honor of Riley with photos in their pockets, pinned to their jerseys and taped to their top tubes. (Amazingly there are two other guys on my team with kids with heart defects, one has had surgery and the other has surgery planned for June.) Riley must have brought everyone luck because Peninsula Velo spent a lot of time on the podium - first and second places yesterday, first and thirds today and first, second and fifth places in different categories for the overall omnium. Randy Smith sent this picture. Thanks guys for all of the support and congrats!

Grumpy

Riley is out of sorts today. He really hasn't said much besides "no," "Mommy" and "I'm sad." For him, these are the toughest days. He doesn't realize that there's good reason to be happy now. He was unconscious during our hardest moments, but now he's awake, uncomfortable and not understanding why Mommy and Daddy are letting him go through all of this. He's mad at us and with good reason. Hopefully he'll be in better spirits tomorrow for his birthday.

In an hour we'll try sitting him up and performing chest therapies to get him to clear out those lungs. Dr. Karl came by to say that he looks good, but that we should be prepared to be in the hospital for another two weeks. The docs always give the worst case estimate, in 2004 we were told two more weeks and it was another ten days. But in any case, we're going to be here for a quite a bit longer.

Finally, in a surprising development the chairs of cardiothoracic surgery, cardiology and pediatrics dropped in this morning along with the president of UCSF. They apologized profusely for the lack of communication, promised it wouldn't happen again and shared a group hug with us all. Tears were shed and - I believe - lessons learned. To top it all off, they announced that they plan to name the PICU unit after Riley and would be donating $1 million in the hospital's name to his college education.

UPDATE: For those who still haven't figured it out, this last paragraph is a (pretty lame) April Fool's joke. It's a complete fabrication, even the part about the group hug.