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.

Fontan surgery scheduled

Riley is scheduled to have his third open-heart operation on March 9, 2006.

He will have a heart catheterization at UCSF on March 2. His Fontan surgery will be performed by Dr. Tom Karl on March 9, with him being admitted to the hospital on the morning of March 8.

See Riley's mom's thoughts here.
See Riley's dad's thoughts here.

Picutures from Riley's second surgery, which took place on May 27, 2004, are available here.