Moved to step-down unit

Riley was just moved to 7 North, the ICU step-down unit. Nurse-patient ratio is more like 4-to-1 than 1-to-1. Fortunately we are in a nice two-bed room with a beautiful view of the skyline. We've been in 7 North three other times and were always in the noisy four-bed room so this is a happy development. The nurse practitioner is currently removing one of Riley's chest tubes. He'll keep the Tenkoff drain, the left pigtail drain and the other two chest tubes until they run dry.

Grampy was with Riley overnight and he did well. At one point he became agitated because he wanted juice but they were keeping his fluid intake low. He turned grey and that escalated his lactate levels, but those came back down when he settled down. He has some congestion in his chest and you can hear it when he breathes. But the x-ray looks fine and he just needs to clear it out. The nurse showed us how to tap on his back and chest area to help him free it up - he just needs a good cough.

Riley's been sleeping most of the morning since we arrived. He had a little morphine and was also given something before they pulled his chest tube. When he starts coming around he'll be able to eat and drink as much as he can handle which should improve his spirits. Doctors will be keeping an eye out for chylothorax now that's he's had some fats. This is the leakage of lymphatic fluid due to a tear in the thoracic duct, usually from surgery (or as the surgeons say, a byproduct of "dissection"). Riley had this after the Glenn, requiring him to be on a fat-free diet for six weeks until the duct healed. In 2004, Riley was still nursing, and that made things very difficult. Hopefully it will be easier this time around now that Riley has much more variety in his diet.

Suzanne and I got to sleep at home last night for the first time in several days, and I even got out this morning for a refreshing bike ride. Riley's birthday is on Sunday and we're going to have a small celebration.

Sunnier outlook

Today was a good day. Riley was extubated and is drinking juice, an arterial line came out and several medications were stopped (including dopamine). He is clearly doing better. His blood and common atrial pressures are normal. His BUN and creatinine levels have dropped. Tenkoff and chest tube drainage has slowed considerably. They were going to remove his chest tubes this afternoon but decided to wait until tomorrow since there was a bit of drainage from one (no point removing two today and sedating him again tomorrow to remove the other). What a difference a day makes.

Riley's doctors also gave us some much better news. Riley's cardiologist and the intensivist/cardiologist both feel he is making great improvements and surgery isn't going to be necessary. But we couldn't feel relief until we'd spoken to Riley's surgeon. He was in the OR all day and finally came by at 5:30pm. He said Riley is doing great and he doesn't think any surgery will be necessary. When asked if fenestration would or would not be an option with Riley's anatomy he basically said "it doesn't matter, he won't need it."

So what caused the Fontan to fail in those first harried 24 hours? The vote is 2-to-1 for arrhythmia. The surgeon and intensivist are pretty convinced. Dr. Karl, the surgeon, said "there is no doubt." The arrhythmia is common with asplenic patients and it was enough to push him over in the critical post-operative period. But what if it happens again? It shouldn't be a big problem in the real world. Arrhythmia can be managed with medication and won't have such dramatic effects when Riley is healthier. I liken it to pneumonia in a 20-year-old healthy person versus an 80-year old lung cancer patient. Riley will have follow-up EKGs shortly after we leave the hospital to monitor the condition, and we won't be allowed to leave until he's stable. We'll see the cardiologist regularly but at some point, he will only want to see Riley once a year (!).

What about that one vote against arrhythmia? That was from Riley's cardiologist who believes we won't ever really know what caused the meltdown on Friday. He saw some evidence on Friday that it wasn't arrhythmia but I didn't catch the technical description he gave to the other doctors. In any case, he thinks we're on the path to recovery and should be home from the hospital in another 2-3 weeks (fingers crossed). Riley's drainage will continue for at least another week.

It's hard to relax and feel like we're out of the woods, we certainly aren't. All of the regular surgical risks still apply - infection (especially for asplenic patients), drainage problems, chylothorax, clotting, irregular rhythms, etc. And the outlook might change again tomorrow. But for now we're feeling better and continuing to hope for a smooth recovery. Grampy is on night duty and Mom and Dad are sleeping at home for the first time in many days.

Dysfunctional family meeting

Riley is extabated and going okay. They've taken him off the dopamine and lipids and are no longer doing the albumin replacement. He is getting some FFP. His BUN and creatinine numbers have come down slightly and his blood gases look good. His blood pressure is much higher today and more stable.

I relieved Suzanne at 5am and she went to the apartment to sleep. When my Dad and Barbara got here at 9am I headed downstairs to get something to eat. When I came back to the room at 10:15 the cardiologist and intensivist were in Riley's room. After chatting for a few minutes I began to get the impression that they considered this the formal family meeting. Unfortunately, nobody bothered to tell the family and Suzanne was not there. Neither was the surgeon. We told the social worker that his presence was critical. Both doctors had positive outlooks and felt Riley's condition had improved, but we didn't have the substantive dialog I'd been hoping for, primarily because we didn't have a quorum and I hadn't fully prepared.

The primary question still is - what went wrong and why did the Fontan fail? The intensivist thinks it was arrhythmia from the trauma of the procedure and that it was a temporary setback. The cardiologist disagrees and says we don't know what went wrong and we may never know. The surgeon didn't express an opinion because, again, he wasn't there. He's the only one with the first hand experience from the OR. An hour after I left I checked my voicemail and there was a message from the social worker - "it's 10 am and the cardiologist and intensivist are in your room so it would be great if you and Suzanne could come up. Oh and the surgeon is too busy today and tomorrow so I figured you could talk to him separately." Not exactly what we'd requested. I was thinking scheduled meeting, people actually showing up, conference room, that type of thing. And nobody from the UC cardiology team who performed the cath was present (the cardiologist who came was Riley's regular Kaiser cardiologist).

Suzanne just arrived and we're going to spend some time with Riley and then we'll go talk to the social worker. Clearly this doesn't count as our family meeting. Oh, and I missed rounds this morning because they closed the door to Riley's room while they chatted outside lest I overhear something I don't understand about another patient I don't know. They didn't bother to reopen the door when they started talking about Riley so I don't know what was discussed.

Consultations

Riley's Tenkoff output is lower today, and he seems better to us. They were going to extabate him earlier but decided to wait because there's no air leakage around his airtube. This may be an indication of swelling in his throat which could cause problems if his airtube is removed. Given Riley's up-and-down fluid levels over the past few days that's to be expected. Docs gave him some steroids to reduce the swelling (if there is any) and they'll wait to extabate him tomorrow. There's no reason to rush since he doesn't seem to be bothered by it.

The project manager in me kicked in today and I've begun whipping this place into shape. As Suzanne mentioned in our last post we're calling a family meeting with each of the key players. Scheduling is still TBD but it will probably be tomorrow afternoon. I also talked on the phone today with two outside cardiologists associated with "Another Top Regional Medical Institution" that shall remain nameless but happens to have a tree for a mascot. We knew one of them through pediatric cardiac support groups and the other is a friend-of-a-friend. Both were extremely helpful and generous with their time. Here are some of the things we learned:

• The biggest question right now, and the one we need to ask tomorrow is: why did the Fontan fail - what went wrong? It's essential that the team get the answer to this question and come to agreement because some causes (like bypass lung injuries or rhythm problems) are reversable and others (like fundamental anatomical problems) are not.



• A cath will definitively answer the fenestration question. The last cath showed the surgeon that fenestration won't help because the pressures in the heart are too high (in other words, even if they put a hole in, blood wouldn't flow into the heart). But the last cath was done when Riley was in severe distress and just before he was put on the ECMO. Things might have changed. My consultants suspect that disagreements between the staff members might be due to whether or not people think things might have changed.



• Fenestration is a reasonable option, and is later closed in a majority of cases. If the fenestration can't be closed later, that means it was the right decision. Think of fenestration as being between a Glenn and a Fontan.



• Fontan takedown isn't a death sentence. Estimates that 2% of Fontans require takedown, but obviously for very complicated cases like Riley's it is probably higher. It's an extreme setback, and serious, but we should have hope. Some kids do better with time and it can go on for some time. They will put a special shunt in to keep Riley's O2 sats above the Glenn level. However, nobody will go back and try a Fontan again unless they know for sure why it failed before and are convinced it won't fail again.



• Asplenia is not a contraindication to heart transplantation. Fontan patients are definitely at higher risk, but there is nothing about asplenia that will disqualify Riley from a transplant, should we reach that stage (either soon or in the distant future).



• Second opinions probably won't help much. There's not a huge difference in how institutions approach this problem and the logistics are a nightmare - i.e. we'd need to get another surgeon up to UCSF to see Riley. What we're doing - talking to people and getting informal opinions - is a great approach.

Anyway, the family resource room is about to close so I'm going to end this. If anybody would like to help financially, please donate enough money to UCSF to allow them to expand their paltry family resource room hours. Ugh.

More uncertainty, mixed opinions

Still not exactly sure what's going on with Riley's condition. After rounds this morning, Dr. Tyndall (one of the cardiologists) came in to give us a very bleak outlook--Riley's not improving overall, fluid from drains is up, kidney functions not improving. He contradicted what Ian (one of the intensivists) told us yesterday that we could continue along this path for as long as needed, as long as there was no deterioration. Tyndall painted a picture that there are increased risks as we wait in this holding pattern with so many interventions and drugs, and that a decision would need to be made in the next day or two as to what the course of action would be--probably a Fenestration.

We told him that Dr. Karl (the surgeon) said he did not think Fenestration was possible with Riley's anatomy, and that the only option was the takedown. Tyndall said that he had not talked with Karl (argh!). After we talked with Dr. Karl again for clarification, he bascially said the pressure in Riley's heart is such that creating a hole between the atriums would not do anything. Rather, the blood flow would just ignore the hole and continue to the lungs. If the time comes when a surgical decision needs to be made, we would head back to the cath lab to see if conditions have changed that would make Fenestration an option. Dr. Karl doubted it would become an option. Still, Karl thinked that Riley looked good, regardless of what the numbers were showing. After that, Ian came in and told us how he thinks Riley is improving. I could only laugh because of my level of frustration after hearing three contracting opinions in the previous 15 minutes.

We are in the process of working with the social worker to set up a family meeting. This will bring several parties into one room where they will be forced to contradict each other in person and hopefully come up with a consensus on outlook and the path we are going to take. We are also reaching out to other doctors and cardiologists that we have met through Camp Taylor and other friends to see how we go about getting a second opinion. If it comes to a Fontan takedown, we want to be sure that there aren't other options being pursued at other top hosptials.

No cath, for now

It's hard to give an update because we're still very much in the dark. Here's what we know. After a fretful 2 hours of waiting while we were kicked out of the ICU for another procedure, the tests are in. That oh-so-important BUN test that everyone was waiting on came back and there was no change. Bad news right? But the doctors said "oh, we don't care so much about that, everything else still looks good." Apparently because the BUN and creatinine levels did not get worse we're not heading to the cath lab at this point. Aarghh. They're going to reduce his volume intake again (to 25% of Tenkoff output) and wait and see how he handles that. His Tenkoff drainage has also declined over the past three hours. If his blood pressure stays constant amidst the lower volume, that's a positive sign.

It's been a frustrating day for all of us psychologically. One doctor will tell us something is a sign of things going downhill and another will come along five minutes later to say he doesn't care about it. The holy trinity of caretakers - the intensivists, the CT surgeons and the cardiologists - rarely agree and frequently contradict one another. If one thing's clear, it's that nobody really knows what will happen and nobody can make a prediction. If Riley doesn't continue to show signs of improvement we're heading to the OR for either a fenestration or a complete takedown. And there's another point of disagreement. The cardiologists (including Riley's regular cardiologist) and the intensivists keep mentioning fenestration as a possible option should things go south. That's obviously preferable to a takedown. But the surgeon continues to maintain that fenestration is not an option for Riley due to his anatomy. We asked for clarification and they paged Dr. Karl who was on his way somewhere and promised to explain it to us tomorrow. We'll try to get it sorted out.

To summarize where things stand: they are keeping a close eye on Riley's oxygen saturation, blood pressure, fluid output, kidney/liver functions and rhythms. We want to see continued improvement across the board. If any of these metrics take a turn for the worse, it's probable that Riley will return to surgery for either a complete Fontan takedown or a fenestration (although the latter might not be an option as I've explained).

Riley is in and out of consciousness and not being sedated at this time. He has opened his eyes on occasion and is moving his arms and legs. They have removed one of his arterial lines and are about to change out the second to accommodate a larger input. The ICU attending is hoping to remove the respirator tomorrow.

We're still trying to take it hour-by-hour and day-by-day.

Key kidney test at 1pm Pacific

On rounds this morning the doctors felt that Riley's condition has generally improved over two days ago but that it's still too early to know if he'll avoid additional surgery and/or a Fontan takedown. His Tenkoff remains high. They've now reduced his albumen replacement to 50% of the Tenkoff volume and given him a dosage of lasix. At 1pm Pacific they'll send an electrolyte test to the lab and look closely at values that indicate proper kidney function, specifically the BUN (blood urea nitrogen) and creatinine. Currently his BUN is high, at 64. With the reduced volumes and diaretics his BUN should go down, indicating that his kidneys are doing their job. If it stays where it is, it's another hint that his lower body isn't responding well to the new Fontan pressures. At that point, he'll likely head into the cath lab where they'll look to see if fenestration is an option. If it's not, we're back to Fontan takedown as the primary course of action. (Recall that Riley's surgeon is skeptical that fenestration will work for Riley's anatomy, and he reiterated that this morning.) The cardiologist assured us that everything isn't "hinging" on this test, but it's clearly important and we're keeping our fingers crossed. Best outcome would be a reduction in Tankoff and lowered BUN. If that happens, they'll probably stay the course and give it more time.

Riley has been in and out of light consciousness as they intentionally reduce his comatose state. He has been nodding his head yes (wanted a book) and shaking his head no (no ouchies) although his eyes haven't fully opened.

No change overnight

Hello to all you early risers and East Coasters. Riley had a stable night with no change. His BP has been pretty constant but there has been no reduction in his Tenkoff drainage. He is still averaging ~100cc of output an hour from that drain in his lower torso, or over 1500ml a day. The plan earlier in the evening had been to start to bring him out of the coma a bit to raise his blood pressure, allowing the doctors to reduce his albumin intake, thereby (hopefully) reducing his Tenkoff. That plan was scrapped at about 11pm when his BPs went down again so the intensivists decided to keep him on the current albumin plan (he gets albumin at 75% of the previous hour's Tenkoff volume). The Tenkoff volumes are an indication that his lower circulation system is having a hard time adjusting to the new Fontan pressures. Fenestration is one way to deal with that until his body is able to handle it. We're not sure if that means fenestration is back on the table until we talk to the cardiologists today. We know that fenestration isn't a solution if his ventricle can't handle the Fontan, but it may be a possible course of action if it looks like his heart is recovering but his lower body circulation system needs relief.

Doctors weren't too concerned about the lower pressures during that period since they come up quickly when he is stimulated and when his liver is pressed on. Right now he is in a good range. His bed linens were changed and he got another bath. Dad has had night duty, Mom is at a friend's apartment nearby sleeping.

Status quo

It's been 6.5 hours since Riley came off the ECMO and nothing much has changed. "So far so good" seems to be the common refrain. His blood gases look good. Blood pressure has ebbed and flowed and just now was quite low (62/48 or so). They are giving him more albumin to increase his volumes and hopefully bump up the BP. The output from his Tenkoff drain has also increased substantially since he came off the ECMO. We were told by the cardiologist on Friday that high Tenkoff drainage is an indication that we'll need to do the Fontan takedown, but we haven't had a chance to speak to her this afternoon to see if that concern still applies given stability elsewhere. His nurse took an opportunity to wash his face, re-dress his chest incision and brush his teeth and overall he looks much better, even if his condition hasn't improved. The ECMO machine was also removed from the room.

ECMO turned off, cannulas removed

Riley was taken off the ECMO machine around 10:25 am, and is currently stable. The cannulas are out. They cannot leave them in his neck for too long of a period without functioning because clotting becomes a concern. We've been told that the next 24 to 48 to 72 hours are critical for him to show that he can adapt to the flow of the Fontan. He remains on the pacemaker which is keeping his heart rate at 124 bpm, and they will continue to monitor his blood pressure, liver function, urine out-take, blood gases, etc., as signs to whether he is "turning a corner." Doctors say that the success rate is about 50/50 at this point. If he starts to trend downwards, they will schedule the Fontan take-down. He will not be put back on the ECMO, except as a means to stabilize him while they schedule surgery.

Thanks again to our blood donors. Riley received one unit during surgery. But since then, he has received at least three transfusions, as well as several batches of platelets.

ECMO wean delayed

Another procedure has come up that takes precedence over Riley's ECMO circuit. They are planning to start this other procedure around 10am, and we were told it might take a couple of hours. So we wait. In the meantime, Riley has been functioning this morning on 50% assistance from the ECMO.

Also, I spoke with someone to get specifics on what it meant to expect Riley to be very sick after being taken off the ECMO. And, as we expected, it means erratic blood pressure, pulse, O2 stats, etc. Basically his vitals likely to be all over the map while they try and find a good balance of medications to (hopefully) stabilize him. Finding this balance could take 24 hours or longer. But the ECMO will stay in place so that they can turn it back on immediately, if needed.

Plans for Monday

Nothing is planned for Sunday evening. The doctors have turned the ECMO flows back up so that Riley's heart can rest - there is no point asking him to work when he will need to work so hard tomorrow. Tomorrow at about 9am they will attempt to take Riley off the ECMO. We've been warned that it will be a difficult day and to expect Riley to be very sick as his heart works to take over the load. It's going to be a very long day so we're going to try to get some rest.

Fenestration not an option, taking ECMO off tomorrow

We spoke with Dr. Karl earlier this afternoon. He said that Fenestration was not an option at this point. So that leaves two options for Riley. One, he needs to completely recover and thrive off the ECMO (the best outcome), or he will have the Fontan take-down. There were some encouraging signs that Riley is comfortable and stable on the ECMO. After saying that they would wait until tomorrow to start slowly turning down the flows, Dr. Karl took a more aggressive approach. He turned the flow from 95%, then to 75%, and 50% percent. That means that right now Riley's heart is doing 50% of the work and the ECMO is doing 50%. This afternoon they needed to change the canister in the ECMO and he was completely off the machine for a short period, tolerating it well.

They are going to turn off the ECMO tomorrow morning (which means they'll clamp the flows, forcing his heart to take over) to see how he tolerates the change. If things don't go well, they will simply unclamp the tubes, allowing the machine to immediately kick back in. If he tolerates the work, they will leave him clamped off until they are certain he can handle the volume. One concern of ours is that he'll tolerate things well for several hours but will eventually decline again. Remember that he did great for the first 12 hours post-op before deteriorating. So it'll be more wait-and-see after the wait-and-see.

Ken & Suzanne

Little change

Riley has not changed much since yesterday. His heart rate is now at 125 and he's on the pacemaker. He is being given digoxin, a drug that helps the heart beat more strongly and regularly, and he has responded well to it. His blood pressure has also come up a bit. Finally, his liver seems to be recovering from the chaos before he was put on the ECMO. The plan is to keep things the same for the next 24-48 hours. The cardiologist says we should hope that things keep heading in the same direction.

None of this should be interpreted as "good news" - it's just a lack of bad news at this point. The best we can hope for right now is that he doesn't take a turn for the worse. The big question mark still is how his body will respond when they attempt to wean him off the ECMO and his heart needs to take over. Right now his heart is not being stressed, and he is being given a chance to rest.

Status quo

Nothing to report here right now. We went home for the night to get some rest and are about to head in. We were told that they wouldn't try to wean Riley off the machine or do anything significant overnight, so we felt safe in heading home for some sleep. Once we get an update, we'll post it here. Thanks for your continued thoughts and prayers.

Update from the cardiologist

I spoke with Riley's cardiologist this morning. They will keep him stable through the day and within the next 24 hours, possibly tonight, they will slowly try to wean him off the ECMO machine to see if his ventricle is capable of handling the Fontan. If not, they'll schedule the Fontan takedown surgery. In his experience, Riley's cardiologist has seen two children need the takedown. One died, the second was able to tolerate a second Fontan attempt a year later.

If Riley survived the takedown they would monitor Riley's saturations and wait until they absolutely need to try the Fontan again, that would be months or possibly up to a year away when Riley has completely outgrown the Glenn. He has also seen cases where children needed the ECMO assist for a period and eventually recovered - he estimates that about 50% of the time kids are able to adapt to the Fontan after the assist. All of this, of course, is speculation based on very small samples of data so it's hard to know what will happen. He also cautioned us that the surgical risk of the takedown is high given Riley's condition and the fact that his ventricle is clearly stressed. They may or may not attempt to reattach the hepatic veins - that would be a "technical decision" for the surgical team.

We probably won't have much to report through the day, we're taking this opportunity to get some food and rest as we expect tomorrow to be stressful and chaotic.

Stable

Riley is on the bypass machine (or whatever it's officially called) and his condition is stable. He has two canulas in his neck - one in the carotid artery and the other is in the jugular vein. Blood flows into the system where it is oxygenated and returned to the body. The machine is doing two-thirds of the work and his heart is doing one-third.

At this point the doctors have complete control over his blood flow. His BP and pressures are normal now that they've been able to take him off some of the medications. The problem before was a vicious cycle: the medication used to increase BP also increases heart rate, which means the doctors are fighting a battle on multiple fronts. Now they can give the heart some rest. Everything should be stable for several hours and we've been encouraged to get some rest. They won't try increasing the load on his heart for another 24 hours or even longer. The plan will be to slowly give him heart some work, and see how it responds. We'll post updates as we have them.

Not responding to medications

Riley was put on several medications in an attempt to reduce his heart rate and increase his blood pressure (see previous post). His heart rate was up around 200, while his blood pressure was in the 40s at last check. However, he was not responding to medications. They were also getting ready to give him another unit of donor blood. It's my understanding that additional blood can make the heart rate fall, but I'm not sure why.

In the meantime, Dr. Karl gave us two options. One was to put him on a machine that is basically a heart/lung bypass machine (only his chest is closed) for a couple of days. It will hopefully give his heart a chance to recover from the elevated heart rate. Option two was to head immediately into the OR to reverse the Fontan (see previous post). We opted for choice one. We don't know how long it takes to set the machine up or how long before we'll know if it is having the desired effects. There is a chance that after a couple of days when they try to wean him off of the machine that his body will revert to where it was with the elevated heart rate and low blood pressure, which will also send us back to the OR.

Wait and see

Riley is back in the PICU. The cath showed that the Fontan and the hepatic vein connections are working properly. So surgery isn't on the table just now. Basically Riley's heart is not able to relax properly to allow blood to flow into the heart. As a result his pulse is very high but his pressures are low. They are treating him right now with milrinone, nitroglycerine and amiodorone. He is sedated, on the pacemaker and intubated and will stay that way for 24-48 hours to keep stress off his heart and to allow the medication to hopefully have an effect. What they want to see are an increased BP and a reduced pulse rate. Ideally he will show signs of recovery and the issue will either slowly go away or be treatable long-term with medicine. If there is no improvement, the fall-back option is to go back into surgery and reverse the Fontan, putting Riley back into the Glenn anatomical state. That's a pretty ugly option since it means more open heart surgery but also an unknown long-term outlook: Riley is having the Fontan because he is slowly outgrowing the Glenn, putting strain on his heart. Dr. Karl said this is something that is done only in very rare cases, he said less than 5% of Fontans. The cardiologist was more optimistic, she said she's never seen a Fontan need to be reversed in 15 years and encouraged us to take things day-to-day or hour-to-hour: there are lots of medical options still to be pursued. She also used the term ectopic atrial tachycardia (David?) as one of the possible diagnoses.

Riley is comfortable and sedated, it's obviously a big step backward since he's in the same condition he was 36 hours ago. Now we just wait and see and hope for the best.

Waiting for cath lab results to set path

Riley's blood pressure continued to drop. An x-ray showed a large quantity of fluid building up under his left lung, and a new drain was inserted into his side to drain the fluid. The hope was that without the fluid, his blood pressure would return to normal levels. It did not. Dr. Tarnoff gave us two scenarios. First, the hepatic veins were blocked, which means they would need another surgery to unblock them and reattach. Second, Riley's body did not respond well to the Fontan. As a result they would need surgery to go in and create a hole to balance the pressure in his lungs. I apologize for my limited knowledge at this time. We are waiting for news. Riley has been in the cath lab for over an hour now.

Heading to Cath Lab, Surgery Likely

Details to follow.

Arterial line closed, drainage increases

The arterial line in Riley's groin came out early afternoon. It has continued to drain since surgery, and since they had a back-up arterial line in his left wrist, they decided it was better to close it up. An arterial line is sewed into the skin to assure that it remains in the artery. The nurse said that she would need to apply strong pressure to the area for about 15 minutes and then wrap it with "pressure tape" to try and get the drainage to stop.

He has been experiencing an irregular heart rhythm--it was first noticed around 3 am. They've been monitoring it since then, but as of now, no one seems too worried. We feel it's one of those things that no one is worried about just yet and are hoping that it will regulate itself. But it could turn into something bigger if his body isn't able to get the rhythm back to normal.

Drainage from his right lung has increased. The respiratory therapist has been in to see him and they want us to encourage him to cough and work his lungs a bit. He was even sitting up for a few minutes earlier, but it really wiped him out. We think this might be the first sign of a chylous (the torn lymph node, which then leaks lymph fluid into his body instead of into his lymph system). With a chylous, he cannot process fatty acids, and we won't know for sure if that is the problem until he starts eating food with fat. So far he's had nothing but apple juice, although he keeps asking for chocolate milk.

Overall, I can hardly believe how agreeable Riley has been though all of this so far. I ask him how he's doing and he says, "fine." He is truly incredible and I feel so fortunate to know him. That is one of the things that bothered me in the beginning when he first came out of surgery. The nurses don't know Riley. He's just another case, another baby having heart surgery. But he really is an amazing little person.

Awake and talking

Riley's breathing tube was removed late last night, around 11pm. His voice was a bit hoarse, his first words expressing a most basic need: "I want to watch TV. Bob the Builder." Mom and Dad took brief turns sleeping on a lumpy cot in a conference room turned dormitory. He's very sweet and agreeable despite the circumstances. He told Dad he had an "ouchy" at one point (the catheter was pulling - mega-ouchy), and he's asked for juice and water, of which he's only been able to have small drops. In 15 minutes he'll start having larger swallows. They think he might be slightly dehydrated so they've upped the IV fluids.

As predicted, the night was stable but busy. His femoral arterial "cut-in" line has been very bloody since the surgery, so they're keeping it clean and covered. At one point they were concerned about his lowered BP but sitting him up straight seemed to do the trick. Temps are still normal, we're very thankful about that [Ed: after Riley's Glenn procedure in 2004, his fever reached a dangerous high of 104-degrees.]

Oh, and since some of you have asked - Riley received one unit of whole donor blood during surgery and some donated blood parts as well (plasma, platelets). This is less than he needed in 2004 (he took 3 units). With bigger kids they don't usually need a unit to prime the heart bypass machine. Thanks to the generosity of friends, Riley needed fewer units than we had donated which means we'll be helping the Bay Area's blood shortage by contributing those other units to patients who need them.

Mailing address

Let's see, what do I have to report. The drainage is down from the previous hour, so that's a good sign. His magnesium levels are low, so they're administering some. Magnesium is essential to the regulation of heart rhythm. Other vitals are in the expected range.

Riley is clearly in pain and obviously uncomfortable. His arms are now restrained to prevent him from pulling at the breathing tube. He's gotten a bit more morphine, but again, in this transition period it's more important that his body start recovering than that he remain pain-free. It's frustrating. He has communicated with us some, shaking and nodding his head when asked questions (he wanted us to read I Love Trains but not Katy No-Pockets; he wanted his Mommy). The nurse predicts that it will be a "stable but busy night". Hopefully the breathing tube can come out in the next 12 hours. I think Riley will be relieved to be able to cry and speak.

Many of you have asked for the mailing address, here it is. If I recall correctly, patients in the ICU cannot receive flowers, plants or latex balloons.

Riley Norton
Pediatric Cardiac Intensive Care Unit
UCSF Children's Hospital
505 Parnassus Ave, 7-East
San Francisco, CA 94143

Riley is out of surgery

He's out and in the PICU. He is on the ventilator and periodically opening his eyes to look around. They can't do much for pain at this point because they need him to begin recovering on his own, which is difficult for all of us. He's on a little bit of morphine and tylenol. There is a lot of chest drainage still, and his coagulation test indicated that his blood is still thin (the nurse said his drainage levels are "on the borderline"). They're giving him some FFP (fresh frozen plasma) to help with the bleeding. Plan at this point is to put him back on the pacemaker and full ventilation and let the FFP take effect, then look at the drainage levels and coag test again. If things are improving in a few hours they'll extabate and let him start breathing on his own. He's obviously bothered by the tube and tries to grab at it periodically.

On the plus side: his temperature is in the normal range and his blood pressure and EKG are good.

Riley is in the operating room

So we didn't get to go home last night. The surgical nurse practitioner tried all variety of tricks, but in the end she failed. I didn't catch the full explanation but the words "procedure", "liability", and "stupid" stood out. But we did get a private room since we made so much noise. Suzanne slept in the bed with Riley and I "slept" on the handy lay-flat chair. Note that flat doesn't mean level, so I spent the first sleepless hour sliding off the chair and onto the floor. Eventually I realized the cold, hard floor was a lot more comfortable. Riley tossed and turned early and then was up from 2:30-4:30 before falling back asleep. The nurse woke us up at 6am for pre-op and we went down to the 4th floor. The anesthesiologist gave Riley a dosage of versed, which basically makes him happy and sleepy. We played with Matchbox cars and watched cartoons while the drug took effect. They wheeled him into the O.R. at about 7:45am. Now we wait. Estimates for how long vary, but it will be at least five hours.

Back at UCSF

We're back at the hospital and checked into a room on 6 Long. Sadly it's the same room none of us were able to sleep in two years ago before Riley's Glenn procedure. It's a 3-patient room right next to the nurses' station. We asked to be moved, but we're not optimistic it will happen. On a good note, the nurse indicated we might be able to go home tonight and come back early tomorrow for Riley's surgery. Suzanne spent many aggravating hours a few weeks ago on the phone with Kaiser trying to make this happen, but red tape got the better of us.

Riley will have blood drawn, a chest x-ray and an EKG. No echo is currently ordered, so we might not need that. We just hung out for a half hour or so in the child life room, Riley was in heaven when he saw their giant box of Matchbox cars. He picked out three favorites and took them back to his room.

Suzanne's Mom and my Dad are here, my Mom is flying in this evening. More updates as they happen. Keep your fingers crossed that we can all sleep in our own beds tonight and that surgery will happen as scheduled tomorrow.

Blood donation complete

Thanks to the generosity of friends and family, we have secured enough blood through the UCSF Blood Center for Riley's upcoming Fontan surgery. If you offered to donate blood, but have not done so, please take this opportunity to donate blood through your local Red Cross. There is currently a blood shortage. While your donation will not go directly to help Riley, you will be helping other families in need.

Feeling better, avoiding germs

Riley seems to be back to his cheerful self--he's eating lots and only napping once every three days. We have even seen some smiles, which is a relief after several days of crying, whining, and sadness. Now we are trying to keep him healthy without keeping ourselves locked in the house. I know he's missing his friends, but I'm worried about exposing him to too many germs that might postpone surgery again. And so now we are just waiting for this whole process to begin again next Wednesday morning.

New surgery date set

Riley's surgery has been rescheduled for Thursday, March 23, with him being admitted on Wednesday, March 22--Ken's birthday.

This means that the blood we collected for his surgery will be released into the general blood bank at UCSF. As a result, we'll need to go through this donation process again. If you are blood Type A or O, and interested in being a possible donor, please contact us and we'll provide more information. Donations will likely be collected from March 16 thru March 20.

thanks,
Suzanne & Ken

Surgery has been postponed

It seems that every time I return to Riley's room after a blog post the outlook changes. This has been quite a rollercoaster day. When I got back, Dr. Karl and the PICU attending were in the room. There are concerns about the virus Riley has had and the fact that he still has a rash on his chest. They went back to examine the blood tests from his cath and saw an increased level of white blood cells which indicates a viral infection. Furthermore, they were worried that Riley hadn't been eating or drinking much in the days after the cath. As a result, they've decided to postpone surgery until Riley can fully fight off the virus. There is just too much risk and it's best to play it safe.

We should be contacted tomorrow with a new date, hopefully it will be in the next two weeks. We told them we'd like it to happen as soon as possible, no more delays than necessary. Unfortunately we'll need to start over again before the surgery - new blood tests, new echo, new x-rays, etc (no new MRI needed though). The donated blood also won't be available for the surgery, it's too far out and it will go into the general population. We'll be able to give blood again in the days before the new date.

We're going home in the next hour or so as soon as we're discharged. My Dad and Suzanne's Mom went to the airport to pick up my Mom, and he'll need to take her first to San Carlos since we can't fit five adults in the car. He'll come back and pick us up. Unfortunately both grandmothers will be leaving town on Sunday and it looks like they won't be here for the surgery.

Psychologically it's a big blow. We've mentally prepared ourselves for the procedure and we're in a hospital state of mind. Having to wait for days or even weeks will be difficult, and having to go through all of the pre-op crap again will be equally frustrating. We know it's the right decision and Riley's best interests are in mind. We'll let you all know when we have a new date for the surgery.

Surgery is on

OK, so ignore all of my uninformed speculation in the last post. Dr. Karl just came by and said "okay, everything's on for the Fontan as planned." He saw what he needed from the MRI and will be attaching the hepatic veins to the pulmonary artery in a patch. Riley's is the first surgery planned tomorrow so they'll take him down to the operating theatre at about 6:30am. They'll administer Versed and we'll stay with him until he's off in la-la land and they wheel him into the operating room.

Dr. Karl said he sees the hepatic vein issue "all the time" with heterotaxic patients. My favorite quote (when asked if the hepatic vein connection increases risks or complexity): "the complexity of any one procedure is in no way connected to our expectation of a normal outcome." Spoken like one of the world's best surgeons. The biggest risk with the Fontan is pressure in the lungs. After the procedure, blood flow to the lungs will use gravity and the pressure from the heart's sole ventricle, so low pressure to the lungs is a concern. However, Riley's pressures look good and Dr. Karl expects a successful outcome.

So now we have an x-ray, urine sample and EKG to go and hope for a decent night sleep. I am keeping myself occupied with the thought of seeing Riley post-op and looking up at the oxygen saturation levels and seeing 90%+ for the first time in his life. It's hard to imagine.

One note on blood transfusions. We have three units of directed blood donated for Riley's surgery. One unit from me and two from friends of Suzanne (I'm sorry, but my tired brain can't remember from whom). The nurse practitioner says she hopes they won't need the full three units. They tend to use less with each procedure. With the Glenn, they needed a unit to prime the heart-lung machine, but Riley's bigger and they won't need it this time.

Awake, and waiting

Riley is awake and back in his room. He recovered quickly from the anesthesia and immediately wanted juice and food. Mom brought his some fruit leathers which he promptly devoured. He's eating Cheerios and watching Bob the Builder in his room now. He's in decent spirits. Still to come this afternoon: a chest x-ray, urine sample (joy) and an EKG (which he despises). No blood samples necessary.

Right now we are waiting for news from the surgeon. He is in deep discussions with a cardiologist and the doctor who performed the echo. Early indications are that they are concerned that Riley's veins cannot be reattached to the pulmonary artery in a patch. Dr. Karl told us earlier that he cannot connect individual veins (or doesn't, or "likes to avoid" - we can't remember his exact words). What does that mean? We don't yet know. Our nurse practitioner told us that cases like Riley come along extremely infrequently, she said less than once a year. That means that she can't give us any indication of what happens next because she just doesn't know.

A web search gives us results about Fontan procedures "with hepatic vein exclusion" which seems to indicate that the hepatic veins are left in place. Presumably this results in patients with lower sats as a result and who knows what other complications. If the Fontan goes as planned, he'll be in normal sat range post-op. So right now we just wait, it could be a while.

MRI is happening now

Riley is in the MRI now, should last about an hour. The anesthesiologist didn't want to use versed this time. Apparently the drug used in conjuction with versed takes too long to wear off and can cause vomiting, which is to be avoided before surgery, Instead, they used gas and a mask. It was just horrible, Mom and Dad had to hold a screaming boy down while they held the mask over his face until he fell limp. It was by far one of the most miserable experiences we've had at a hospital. We don't know what to expect when he wakes up - we feel like we've violated his trust in us. He was looking directly into my eyes as he drifted off with a look that seemed to say "why are you doing this to me?"

In any case, the anesthetic should wear off fairly quickly, he should be up and around within an hour after they are done. He can eat and drink as soon as he wants to, so that will hopefully bring some comfort. No word on when the surgeon will have seen the results and formed an opinion one way or the other.

Thanks for all of your comments, positive thoughts and good wishes - keep them coming,

Riley needs an MRI, keeping fingers crossed for surgery as scheduled

Yesterday the nurse practitioner called us to say that Riley needs a battery of tests that have been overlooked. The surgeon is concerned about the venal return from his liver. Normally, veins from the liver drain into the inferior vena cava. However, with Riley's anatomy, organs and veins often aren't where they're supposed to be. Kids with Riley's condition often have hepatic veins that connect separately to the heart. If these aren't modified during the Fontan, oxygen poor blood will still end up in the heart and the kids will still be blue. To prevent this, any hepatic veins will be removed from the atrium (usually as a patch) and reattached to the pulmonary artery with the IVC.

Riley's surgeon, Dr. Karl, asked about the hepatic veins when he saw Riley's case on Tuesday, and unfortunately they had been overlooked. The heart cath would have been the perfect time to investigate them, but alas it didn't happen. So we had an echocardiogram this morning. The echo showed definitive evidence that Riley does have hepatic veins that bypass the IVC, but it didn't give enough specific information for Dr. Karl to operate with. So we're now scheduled for an MRI at 12:30. Hopefully the MRI will give Dr. Karl specific data about which veins are going where to help him decide what to reattach during surgery.

So what happens if the MRI doesn't give us conclusive information? This is the bad news. Dr. Karl will order another cath and reschedule surgery. That means we'll have to go through everything we went through last Thursday and surgery would be rescheduled for another time. And presumably the cath wouldn't happen today, which means we go home, come back again for a cath and then surgery at some later date. Let's keep our fingers crossed that Dr. Karl gets all of the information he wants from the MRI.

Riley will be sedated for the MRI, he'll receive versed in about an hour and then something stronger to put him out. After the MRI he'll be recovering in his room on 6 North. He'll also need a chest x-ray and an EKG at some point this afternoon. Fortunately it looks like he won't need any additional blood tests, which we had hoped. The nurse practitioner is looking into that. If they do need more blood, hopefully they can take it while he's out before or after the MRI.

Suzanne, Grampy (Jack) and Grandma (Gail) are all here, Grammy (Peggy) arrives this evening. Suzanne and I will stay in the hospital overnight with Riley. We'll keep everyone posted.

Still sick, no appetite

Four days later, Riley is still not himself. It's four o'clock and the only food he's eaten today is two bites of cereal at breakfast and half a slice of cheddar cheese. He's had a few sips of chocolate milk and probably six ounces of watered-down grape juice.

Yesterday, we tried to get him interested in strawberry-flavored PediaSure. I called it "strawberry milk," which he assumed was the Hershey's kind, but one gritty sip was enough. I also got some PediaLite popsicles, but we have yet to try them. Someone told us they are nasty, so we went with the good, old-fashioned Popsicle brand with grape, cherry, and orange. But he's not a fan of those either...a couple of licks is enough.

I feel at this point, it's the chicken and the egg. He feels crappy because he has no energy from not eating, and he's not eating because he feels crappy. Not sure how to break out of this cycle. He's still getting Tylenol around the clock. We switched to bubblegum flavor, which apparently tastes just like his amoxicillin, so he's been more agreeable when it comes to medicine-time.

We also got out many of the old pictures from his last surgery (May 2004), and talked about his upcoming surgery. He didn't ask many questions, but he did like seeing "Randi" and "Mabel" at the end of his hospital bed. And he wanted to make sure that they would be there this time too.

Not dehydrated, but virus strong

Doctor Sipes saw Riley this afternoon and we are happy that he is not dehydrated. He said that most of the time people usually are 50 percent more hydrated than necessary, so if he doesn't drink much for a few days, he is going to be okay.

However, after examining him, Dr. Sipes said that he does have a virus, which is unrelated to the heart catheterization. His nasal cavities are very swollen and he has a rash on several parts of his body. Thankfully his lungs are clear and his heart sounds good. However, he is still extremely uncomfortable. When the Tylenol starts to wear off, Riley makes a wincing sound when he breathes. Half way through each breath, he pauses with a little wince and then finishes his breath.

He is also still very lethargic and does not want to eat. He told me that he was hungry when he got up from his nap, but despite me offering all kinds of things, there was nothing that he actually wanted to eat. We'll keep trying though.

The most frustrating part is that Dr. Sipes said that this virus will likely last three-to-five days. We're hoping for a speedy recovery, but if he does not get better, there's a good chance the anesthesiologist will want to postpone surgery.

Concerned about dehydration, heading to doctor

Riley still isn't interested in eating or drinking. I will get some PediaSure (based on Dave's recommendation), although if he won't drink chocolate milk, not sure he'll like that much either. But we'll give anything a try.

I spoke with the fellow from UCSF again this morning, and she wants him to go in for an appointment to make sure that he's not dehydrated. So, Riley has an appointment at 1:20 this afternoon. He keeps saying, "I'm not feeling very good." The fellow also recommended us getting a different flavor Tylenol (he has cherry), and he's been fighting us. I finally tried it and it has a *horrible* aftertaste.

Fever, soreness lingers

It's been more than two full days since Riley was released from UCSF following his heart cath. The doctors expected a mild fever and some discomfort as his body adjusted to having the 18 platinum coils in his heart. His fever continues to hover around 100 degrees, give or take a degree, depending on where he is in the Tylenol cycle.

Also, he has not eaten a meal since Wednesday night--the night prior to the procedure. The best attempt was a plum and a couple of Cheerios Friday morning. Today he's eaten two bites of cheddar cheese, a couple of sips of chocolate milk, and a couple of bites of yogurt. He's even declined ice cream. Getting him to drink has also been a challenge and he has had few wet diapers. Earlier this evening, I spoke with one of the fellows who saw Riley at UCSF and she was also concerned about his lack of appetite and his lethargy. She increased the frequency that we're giving Tylenol to help alleviate the soreness so that he'll feel better about eating. I need to give her an update in the morning. If he doesn't improve, she wants us to bring him in. We're concerned that any further delay in him recovering from the cath will cause them to postpone surgery.

In addition to feeling sad and uncomfortable, he also seems to have a stiff neck. He winces whenever he needs to sit up, lie down, or roll over.

Recap of what's next

Now that the cath is done we thought we'd summarize what's coming up next. On Wednesday March 8th Riley will be admitted to UCSF in the early morning. They'll get him a bed and prep him for surgery that day (but fortunately take no more blood samples). His surgery is scheduled for the morning of Thursday March 9th. We expect him to be taken to the Pediatric Cardiology ICU on the 7th floor ("7 East") immediately post-op where he'll stay for a few days (if history is any guide). Then he'll be moved to the pediatric step-down unit right next door ("7 North"). He should be in the hospital for about two weeks.

Riley is having the Fontan, the third open heart surgery in a three-stage procedure. He had the first stage, called a BT shunt, a few days after he was born. Then in May 2004 he had the second procedure, called the Glenn. The procedures are designed to compensate for his single ventricle by routing oxygen poor blood away from his heart directly to his lungs. As a result, his heart will only need to do the job of pumping oxygen-rich blood to the rest of his body.

Rough day

Overnight, Riley woke up two times and was hurting. We gave him some Tylenol and got him back to sleep. But he's been up since about 6:30 this morning and it has been very challenging for him. He is extremely uncomfortable, agitated, and unhappy--I can't blame him. The adhesive tape needs to come off from the puncture wounds on his neck and groin, but it is super industrial strength tape, and it is not fun. I've tried softening it up with hot water and a smidgen of Vaseline around edges, but so far no luck. There have been lots of tears shed by both mom and Riley.

This was supposed to be the easy part.

Home now

We're home, Riley's in bed and sleeping soundly. He got a little punchy there towards the end, I think he'd had enough. They gave him some more Tylenol for the pain which helped him doze off on the drive home. Why do we always believe them when they say "we'll get you out of here by 8 o'clock?"

Awake and watching DVDs

Riley is awake and is currently watching movies on the portable DVD player that our friend LeAnn smartly lended us (thanks LeAnn!). He woke up about 4:30 and complained about pain in his leg (where the entry wound is) and wanted juice. They gave him some Tylenol and he went back to sleep. He came around again about half an hour ago and is in much better spirits. (Sadly, Bob the Builder's soul-crushing musical refrain tends to have the opposite effect on his parents).

Dr. Moore from the cath lab came down to talk to us. He explained that they used 18 coils to destroy four collateral vessels. The coils are straight pieces of platinum inserted via the catheter. They spring and expand when pushed out of the catheter. They'll look a bit like ballpoint pen springs on an x-ray. The biggest risks with coiling occur during the procedure, so we're mostly out of the woods. Kids tend to have a low-grade fever for a few days as the body fights off the foreign objects, but that's easily controlled with Tylenol. Eventually the body will clot over the coils and ignore them.

Riley's sats are in the low 80s and Moore believes that Riley is a good candidate for the Fontan next week. We asked about Riley's anticipated energy level post-op since his oxygen levels will be increasing to normal levels. He explained that although the oxygen saturation becomes normal, the body is weakened while it recovers from the "major offense" of significant surgery, but at some point the additional energy levels will take effect.

Riley will get his normal dosages of lasix and amoxicillin before he leaves the hospital tonight. In addition, he'll receive another antibiotic prophylactic as a precautionary measure. He'll get all of his meds as normal until he comes back to UCSF next week except for aspirin, which is now discontinued until after surgery.

We're still on the charts to be discharged at 8pm, hopefully that will hold and we can get out of here at a decent hour. I tried to get some shut-eye earlier in the family waiting room but at some point a large family joined me and my rest session degenerated into a "learn Spanish while you sleep" experiment. (Empirical findings: the efficacy of such a program remains in doubt - I didn't get much sleep and my Spanish hasn't improved markedly).

Resting comfortably

Riley is out of the cath lab and in his bed. We're in the pediatric step-down unit on the 7th floor where Riley ended up the last two times after leaving the PICU. Dr. Tarnoff came down and chatted with us - "only good things to report". There were a "significant number" of collateral vessels closed off. The valves and pressures look perfect for the Fontan next week, so everything will proceed as planned.

Riley's blood oxygen saturation is now down to about 80%, it was as high as 86% before he went in for the cath. That's expected since the collaterals were responsible for the increase above his usual low-80s. After the Fontan next week, his oxygen levels should be normal - high 90s.

Before he went under we asked the doctor if they could take all of Riley's pre-op blood samples today instead of next Wednesday when we come back. The blood taking was a nightmare in 2004 before the Glenn. Riley was poked and prodded for over an hour before they found a good vein. He was hysterical and it was agonizing to watch. Fortunately the doctor reported that they were able to take all of the samples they needed during the cath, so that's a relief. I gave blood while he was under and will be able to give again on Monday (you can give every 72 hours).

He's expected to be out for another 1-2 hours, then he needs to stay lying down until 8pm. I think the portable DVD player we brought will come in handy as 3 year olds aren't exactly known for their prowess in the extended prone position.

Still a few more hours

We just got a page. Everything has been going well, Riley is asleep and comfortable. They've found collateral blood vessels and want to close them out. Collateral vessels are created naturally by Riley's body to adapt to the low oxygen levels. Unfortunately, that's working against the upcoming Fontan procedure, so they will be destroyed by coils. The cardiologist is scrubbing in now, Riley's cardiologist will assist. They can take a while - "at least two or three more hours." We've been asked to call the lab again at 2 o'clock for an update if they don't page us in the meantime.

Riley is in the cath lab

Riley is now in the cath lab. Dr. Tarnoff, his cardiologist, is there and will assist in the procedure. They're expecting it to last from 2 to 3 hours. We have a pager and they'll give us an update about 90 minutes in. As planned, they'll be coiling off any secondary blood vessels that have formed since the Glenn. They'll need to go in his leg and his neck (as a result of his Glenn-modified anatomy).

Riley did great and was very brave taking all of the medicine. He received a ton of Benadryl to relax him, and then Versed to relax him even more. We were excited that Clark, the super nurse from 2004, was there to take Riley upstairs and get him settled. We went into the lab with Riley (and his two Matchbox cars). He was starting to get sleepy as they turned on Nemo on the overhead TV. When we left, he was just about ready to doze off.

So we have a few hours to keep ourselves busy. I'm going to give blood for Riley's surgery next week. They'll need four units ready for transfusion and due to the blood shortage, they encourage family members to bank blood. It also helps me feel useful, and it's a bit more calming to realize that it's your own blood in that bag leading into your son's body. We also need to figure out parking. In 2003 and 2004, we were lucky that off-street parking, while sparse, was all day. Now it's two-hour residential. We get a discount on the garage, but it's still $15 per day which adds up when you're here for weeks at a time.

We'll keep you all updated.

Catheterization on Thursday

We're headed to UCSF bright and early tomorrow morning for Riley's pre-op heart catheterization. We need to be at the hospital by 6:45am and Riley should be in the room by 8am. The procedure will take from 2 to 3 hours and then Riley will need to stay in bed for 6 hours. He'll be asleep for a part of that, but we're not exactly sure how they plan to keep an almost 3 year old lying down once he wakes up. I guess we'll find out. We should be out of the hospital and back home sometime after dinner.

We've been gradually preparing Riley for hospitalization. About a week ago we started reading books about being in the hospital (Franklin Goes to the Hospital and a book by Mr. Rogers). He also has a doctor kit and we've been checking each other's temperature, listening to our hearts and measuring our blood pressure. Yesterday we told him for the first time that he'll be going to the hospital himself and we spent some more time talking about it today. Apparently the rule of thumb is to tell a child as many days ahead of hospitalization as they are years old.

We'll post updates tomorrow as we get them.