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.