Friday, July 31, 2009

Home!

We got home at around 2 o'clock today. Chemo started at 11, ended at 12, had hydration until 1, then deaccessed and loaded in the car. With a quick stop at CVS to drop off The Boy's new prescriptions, we got home promptly.

The Boy ate a whole lot of chicken and broccoli at 12:30 for lunch, then ate a couple of rice cakes and a whole lot of watermelon when we got home. That was significant, because he really hadn't eaten any meals for several days. Not unusual, because of the chemo; but it was still nice to see him eat.

The entire family then napped from 4 until almost 7! I know that The Boy and I were really exhausted, so Mommy took Younger Bro inside at 5:30 and let us sleep. We woke up to a wonderful dinner of steak and noodles, which The Boy ripped into with enthusiasm. True, he puked up some of the noodles, but that was because some cookie got caught in his throat.

How is he? Okay. Uncomfortable. His blood pressures are mysteriously high today, something that we hope will work itself through. Not sure if it will, but I've been wrong before. It's 11pm and a diaper hell night, and he's just settling down.

Hopefully, the rain will hold off a little bit tomorrow so that we can spend some time outside. The Boy needs to work his strength back up.

Wednesday, July 29, 2009

Huh.

Am I wrong to feel guilty when The Boy sleeps through visits? I feel very bad that, twice now, two young ladies have come to play with The Boy, only to find him in the middle two hours of a LONG nap. I feel very badly about that, even though there isn't anything that I could have done to prevent it. When people come to visit, I want them to have a fun time with The Boy, so that they'll want to come back. Huh.

Afternoon Delight

This afternoon, we met another wonderful volunteer sent over from the local Jewish federation, named Y. She's a mom of 3 and an occupational therapist, but she was coming to lend a hand for an hour or two to The Boy and me. It was incredible to have her come over, because that extra pair of hands means so much.

I'm a little overwhelmed at the volunteers that have been coming by, because I find it hard to believe that so many people are willing to donate time and energy (and money, for gas & parking) to come and sit with us in the hospital! Today, Y's presence allowed me to take a leisurely shower, microwave my lunch without running back and forth, and walk downstairs to McDonalds for coffee and cookies. (I meant to save one cookie for my wife, but it didn't make it back upstairs before becoming a casualty. I'll file a Missing Cookies report, but I think I'll find it in about 12 hours.) When I was there in the room, it was nice having someone to help out and to talk to.

Sigh. The Boy just dumped a thing of juice on the floor. Got to go.

Distressingly interesting...

Last night, I got a text message saying that The Boy's temperature shot up to 99.8 axillary, which - you'll remember - means 100.8. That's not good. I was at my barbershop rehearsal, and it was disheartening to have a formerly pleasant evening have this giant rock fall on our toe. Anyway, I got back to the hospital quickly to help out.

The Wife and Younger Bro were there with N, a volunteer from Chai Lifeline. She was a wonderfully pleasant and fun young lady, and Younger Bro >loved< her. I mean, he'd be crying and miserable, she'd pick him up, and he'd calm down instantly. What a huge help!

Again, Chai Lifeline comes through huge. They've just been amazing, all the way during our whole process. Food, volunteers, help, prayers... they just GET it. I am looking forward to the day where we can start to repay their help.

They started chemo at 4:30 or 5AM, because they were waiting for the specific gravity of his urine to get below a certain point. Eventually, they just started it. No big deal. His counts are back down into the basement; red cells are back down to 7.1, which is mystifying. Turns out that the vasotec, the pro-kidney drug, depresses bone marrow's ability to create red cells. Sigh. Looks like we're dealing with regular transfusions for the length of his treatment. How frustrating - those are full days at the Valerie Center because of it.

The Boy woke around 7 and ate a cereal bar while watching - you guessed it - Elmo! He was nice, cute, a snuggly. He got down to play, and all of a sudden... well... he stood up and left a huge puddle / pile of poop, which he then slipped on as he tried to walk away. The diaper half-hanging off of him didn't help his balance at all.

Long, traumatic story short, I cleaned him up, got him into new clothes, cleaned the poop off of the ground, and bleached out his toys. Worst part about the whole thing was that his access point in his IV line was lying in the poo puddle, which means that giving him medicines and things can't go through the normal tube, and we can't change his tubing until he's done with chemo around 1 PM.

The frustrating thing was that housekeeping was immediately called, and they didn't come until I called them an hour later. "This is the first call we got about that room!" "No, Sadie called an hour ago." "Oh, yeah. She did. I'll get someone on it." Why is it that so many people need to be threatened in order to do their job? Doesn't make sense to me.

In the meantime, The Boy still isn't eating normally. He did have a cereal bar, and - thank G-d - he loves the Enlive nutritional supplement that tastes like apple Jolly Ranchers. He's still grazing on cereal for a good chunk of the day, which I like.

What we really need is for him to start eating yogurt and rice, so that his digestive tract starts to adjust to chemo butt.

Ah, my son...

May you, one day, know the searing crotch pain that is fatherhood.

Ouch. Just, ouch.

Tuesday, July 28, 2009

Still waiting...

No word on whether or not chemo is going to start today. It's 12:07PM, and I'm a little irritated that we don't have any word yet. Annoying. I'd even like a, "We're still thinking about it!" from the doctors, but we haven't even gotten that.

Interesting time tonight - I've got barbershop rehearsal, and I'm not entirely sure who's going to be here with The Boy. The Wife could bring Younger Bro, but we're not entirely sure if we want to leave her along with a potentially chemo-toxic The Boy and a 3-week old newborn. Might not be the smartest thing, you know? I hear those chemo drugs are bad for you.

Monday, July 27, 2009

Altogether, a fun day.

The Boy had a pretty darn good day today.

After the aforementioned refrigerator game, we played normal games for a little while before S, a volunteer from Chai Lifeline (they're SO AMAZING!!!) came by. Lunch arrived at roughly the same time, so we set up The Boy with turkey and rice, and I left to go downstairs to McDonald's and have lunch with Uncle B.

McD's is getting slightly better when it comes to its choice in foods. I had a snack wrap, which is grilled chicken, honey mustard dressing, lettuce, and a tortilla wrap. 290 calories, which isn't bad. Granted, the chocolate chip cookies I had for desert were worse, but still better than a Big Mac.

When I got back upstairs, The Boy was asleep in S's arms. I puttered around the room for a bit until he started to stir, then we put him in bed and S left. It's really nice having the company, and I'm glad she came! He slept another couple hours, until 4 o'clock. At that point, we went into the playroom to play for a half hour, before they closed at 4:30.

When we got back to the room, Logical Mommy and Younger Bro were there! What a wonderful treat! Another volunteer from Chai Lifeline was there, so I took the opportunity to go and work on some schoolwork while they took care of the boys. The Boy had dinner, which was hot turkey and rice and most of a thing of Enlive, the pediatric protein shake stuff that the nutritionist recommends. We want to fatten him up, you know.

The volunteer left soon after, and Grandpa came by to visit. It was a nice visit, for sure! The Boy did some nice playing, and Mommy and Younger Bro left after a while. Grandpa stayed long enough for me to do my teeth and stuff, then he left. Soon after, The Boy fell asleep and, I hope, will sleep through the night.

His blood pressures have been great all day, hovering in that 100/55 range which is the correct neighborhood. His potassium levels and blood creatinine levels have been decreasing as well, so we're on track for chemo starting tomorrow. Considering how much they have to hydrate him for the chemo medications, they want to reduce his water levels and potassium levels still further. But, they cut the dosage of the minoxidil down. (I don't think that'll last. But, let them experiment. What do I know, anyway?)

Just a nice day today, for sure. Lots of great visitors, lots of great family time... I even held both boys for a little while! No complaints at all, for once. The rest of the night, I'm going to work on my paper a bit, then watch a movie. Maybe "Knowing."

Keeping him busy...

Chemo is supposed to start today, but we haven't gotten the official word yet. Dr. Rifkin is sitting outside at the nurses' station talking with the children (the residents), so I'm assuming she'll come in to chat when they're done.

In the meantime, we're playing the refrigerator game. He brings me a can of ginger ale, I say, "Thank you!", he says "Thank you!" back to me, then goes to get another one. When they're no more cans, he takes them back to the refrigerator one by one, saying "Thank you!" each time. He's been at this a solid fifteen minutes now, which is kind of entertaining.

I'm making a conscious effort to have less television playing, so I "invested" $6 in a new iPod speaker. It's about the diameter of a soda can and about an inch thick, yet is powerful enough to fill the room decently. We're powering through some Sesame Street soundtrack stuff and through some barbershop stuff. I know we'll watch more television when he's immobile during chemo time, but I'm in no rush for that. Imagine... listening to music and maybe (gasp) reading a book, instead of watching tv! Blasphemy, I know, but such is life.

I'll keep you informed. Tune in, and tell your friends.

Sunday, July 26, 2009

Turning the corner?

The Boy fell asleep at 6:30PM last night, and - much to my amazing surprise - he slept through until 7:30 this morning! Then, after 90 minutes of playing and eating, he fell asleep for another 2 hours. He's been awake for about a half hour, just lying in bed, playing with a new toy (picked up on clearance at Big Lots), and pooping - three poops since he woke up at 7:30.

I really hope that he's turning the corner, here. His blood pressures have been consistently good, hovering around 100 over 50, which is a good range for a two year old. His potassium level this morning was 4.8, which is the best that it's been in a week or so. With luck, after such long and restful sleep, he'll be able to lower that even further.

Say a prayer or two, that we'll be able to say that July 26 was the end of this bad period and the start of a new 5-month period that is uneventful!

Saturday, July 25, 2009

4222

This is one of the rooms that we've been assigned quite a few times! It's an interesting room, for a couple of reasons:

1) the bathroom is about the size of a small half bathroom - toilet and sink, with the normal metal shelf above the toilet.

2) There's a showerhead in the ceiling, with a faucet handle in the wall. The faucet doesn't work, but there's still a showerhead sticking straight down out of the ceiling.

3) The sink in the bathroom is too small for the installed faucet, which means that when you turn the water on, it splashes on the front of your pants.

4) The doorway looks directly out at the nurses' station, which makes it very easy to get attention and/or help... and difficult to change your pants.

5) The window almost, but not quite, allows us to see the East parking lot, where the Valerie Fund parking is located.

I like this room.

When It's Sleepytime Down South...

The Boy fell asleep at 6:30. I tried to wake him at 7:30, and again at 8:00, to no avail. So, one of two things is going to happen: Either he's going to wake up at midnight and play until 3 or 4AM, or he's going to sleep through until 4AM or so and be awake for the duration. I'm obviously hoping for the latter, because it's 10:20PM now and I'm not asleep. Not for lack of trying, but... heck. I'd gotten good at sleeping when he does, and I'm out of practice.

He took his minoxidil quite well; he didn't even wake up! I don't know whether to be happy about that, or depressed that it's gotten so routine. I don't think this pill is as noxious as some of the others, so we have that going for us. Joyce is on duty tonight, and we like her. She's a cool chick and a good nurse; she's one of the ones that would be a cool person to go have some beers with. There's a few of them on the floor. She still calls me Mr. Musical Daddy instead of my first name, but that's life.

Potassium was at 5.2, which is an improvement over the 5.4 from this afternoon but not as good as the 5.0 from this morning and is an improvement over the 6.0 from admission. I'm hoping to keep it under 6, because 6 is the magic number that means Butt Medicine. I don't want to give Butt Medicine. Next time, though, I'm going to learn to do it, and I'll do it myself. No more semi-competent nurses, just semi-competent Musical Daddys.

Don't get me wrong; I don't really want to know how to give enemas to infants. Given the choice, however...

Anyway. I watched the end of Hellboy II: The Golden Army, which is a fun fantasy movie. I just finished and turned in a 65 page research prospectus (up from the measly 42 pager that I turned in in April), which means that I have only one more project to complete. In a moment, I'm going to brush my teeth and do other nighttime ablutions, then climb into bed and watch Burn Notice and maybe Warehouse 13.

Thank G-d for my iPods and my technical knowledge. I'd then be stuck... shudder... reading books or something.

Crazy Baby Time!

Over the past week or so, The Boy has started to act quite silly during his play time. This is, of course, developmentally appropriate and mostly welcome. Today, for instance, it's quite welcome, even if it does occasionally get frustrating. As I've said on a number of occasions, I would SO MUCH rather deal with "normal" toddler issues than any of this cancer stuff. Right now, for instance, he's trying to play with the blinds that cover the inter-room windows. Sigh. He threw a minor fit, distracted by being plopped into a chair with a Winnie the Pooh telephone.

Which just got thrown onto the floor. This is two minutes after a small amount of turkey got thrown onto the floor, after a large amount of turkey got thrown onto the floor, after a telephone handle got thrown onto the floor, after a cell phone got thrown onto the floor. Sensing a trend? Me, too.

Okay, so how does one discipline an extremely hypertensive toddler, when a fit that goes on a little too long can cause, say, a stroke? Your guess is as good as mine. I'm trying to reward good behavior with attention and enthusiasm and "reward" negative behavior with less attention and more indifference. This doesn't necessarily jibe with, say, my father's methods of discipline, but cancer treatments aren't necessarily compatible with normal child rearing methods.

We'll figure it out. Right now, though, he's preparing to dump a thing of Cheerios, so I'm going to intercept. Later!

I found this to be very funny...

I picked this up from Twitter, @nomaas. "nomaas.org" is a great Yankees site that is very sarcastically funny, and they put this link on their Twitter feed this morning.

If you haven't seen Superman II, this won't be funny...

Abort! Abort!

Not a big fan of our night nurse. I knew there'd be an issue, when one blood pressure reading of 140/96 went unchallenged. Everyone else takes at least one more reading, then moves to a different limb, before accepting the reading.

When she seemed taken aback by me asking her to mix the medicine with grape juice, she responded by using enough juice to have our hydrolazine come out to 7mL of fluid (we take 2mL in our concentration) and 10 mL of the monoxidil (which is a 2.5mg pill). I'm not thrilled about that.

She did tell me that she tried to convince Dr. Roberti to redo the chemical workup to check the potassium levels. She has that going for her.

When we rolled The Boy over to give him his potassium-reducing enema, she didn't get it right. She inserted the tube, squeezed, and nothing came out. Took it out, reinserted it, squeezed, nothing came out. Adjusted, nothing came out; Adjusted, and fluid sprayed from somewhere onto the diaper. Adjusted once more, and I called quits. I'd rather try the oral solution (spread out over an hour and a half or so), then the IV, then dialysis, before I risk this nurse opening an anal fissure in my slow-healing son.

I really don't want another asshole opening up, that will force consequences that we'll deal with until the end of his treatment. I've read enough horror stories.

She called Dr. Roberti, who wants to run the potassium numbers again before we give him the fluids. This was around fifteen minutes later, and The Boy was sleeping on his belly on me. I rolled The Boy over so we could access the port. Long story short, she put the flush in but got no blood. Had to manipulate The Boy (waking him up and really ticking him off) before we got a blood return.

I know that's not necessarily her fault, but why could Debbie get it this afternoon and she couldn't do either thing?

Urgh. 12:18AM. I'm not particularly optimistic about the potassium levels, so I'm positive that I'll be giving oral medication from approximately 1 until 3 AM. I'll keep you informed.

Friday, July 24, 2009

Exactly as unpleasant as it sounds...

So, The Boy's potassium levels were really, really high: 5.2, to be exact, when the normal amount is less than one. A particular medicine was given to him to take. The nurse came in with 5 full syringes; apparently, the dose for someone of his size is 48mL. That's a LOT of fluid. After it made him puke twice, we went to plan B.

B, of course, stands for butt. As in, The Boy has now received the first (and hopefully only) rectal medication during the course of his treatments. They don't do anything up there because of the somewhat obvious fact that shoving stuff up the pooper plus low platelet counts can be a REALLY nasty, messy, long-term problem. (Think a bleeding rectal abcess that lasts for the better part of 18 months, and you're on the right track.) But, they apparently decided that, since his platelet count was high and chemo was three (minimum) days away...

The nurse came in at 6:30 with a rectal syringe that was full of... well... what looked like a large Dunkin Donuts coffee with cream. (Now, that's an image I wanted. Ugh.) We woke him up (again), flipped him over, and shoved the syringe in and emptied it. Long story short, he was pooping liquid (deja vu) for a continuous 2 hours.

The glories of fatherhood. Love, snuggles, smiles, teaching your sons how to be men... and dealing with liquid poop exploding out at alarming speeds.

Did I mention that we're doing it again at 10:30? Meaning, we'll be changing those diapers again until around 1 or 1:30 in the morning?

I'm not pleased with Dr. Roberti right now. Not at all.

The monoxidil will be starting tonight or tomorrow. I pray that this gets The Boy's blood pressure under control. I'm really quite concerned... I even argued to start this hospital stay earlier than Dr. Roberti wanted, because 20mg more of the newest medicine wasn't going to lower his diastolic blood pressure from the 85's (where it's been for the last two weeks) to the 50's (where it needs to be).

Thursday, July 23, 2009

Regression?

We got home at eleven or so on Monday morning, which was really awesome. We ran The Boy around all day, because we were all excited to be home. He went to sleep at around 8:30. Mommy went to sleep at around 10, and I joined them at 11:30.

At 12:30, Younger Bro woke to be fed. The Boy woke at the noise, saw YB feeding on Mommy, and fuh-lipped out. I mean, an epic fit. Long story short, it took until 4am (and a Mommy intervention before I strangled the little pain in my rear) to get everyone calmed and sleeping again.

Tuesday night, mommy had some issues getting the boys to sleep. At 4am, The Boy woke up and wandered off. He fell back asleep at 7.

This morning, we were hoping for a change. He fell asleep at a normal time and had an uneventful night... until 4:30, when be woke, screaming for something unintelligible, later discovered to be juice.

Oh, boy. Looking forward for this to work itself through.

Sunday, July 19, 2009

Point of comparison...

The Boy in his chair:











Younger Bro in his chair:















Kind of cool, no? I don't want to compare the two boys... well, yes, I do, but not too annoyingly.

Going home tomorrow morning!

Today was a good day, at least for me.

The Boy is doing okay. At least, he's well enough to be heading home for a few days, first thing tomorrow (Monday) morning. His temperatures are right around normal, and his blood pressures - while high - are not in danger zones. He's maxed out on four meds, and the only two left are procardia, his rescue medication, and minoxidil, which is never proscribed to kids his age. At least he might grow hair.

My brother and his wife came this morning and stayed for about three hours! They helped me clean the toys, and my sister-in-law straightened up and organized the room. I got to take a shower (to everybody's relief), and I even got to walk outside for a few minutes! When The Wife arrived, they took Younger Bro for a walk, as did Grandpa, letting The Wife, The Boy, and I enjoy a family moment. The Wife stayed for a little while, as The Boy was allowed out into the lobby to see his baby brother. Picture attached.

They left, and The Boy and I were left alone for a little while. Considering that his diaper rash, despite the nystatin Butt Paste we've slathered on with a trowel, has grown to the size of his entire rear end, I let him nap without his diaper for about two hours, most of which was while my niece was visiting. He actually did not pee or poop during the entire two hour nap! (Maybe he'll be ready for potty training earlier than I or my wife was.) Hopefully, it'll help the rash. Not as much as getting the hell out of the hospital, but one step at a time.

My niece visited for a while, and when she left, my friend E showed up for a couple hours. It was nice to see him, as I don't often get to see him because of an insanely busy schedule. He brought a cake, which was yummy.

He left right as they put a urine collection bag on him, as they want one more sample to check to make sure that infection has left. He took 90 minutes to pee, the little stinker; that's still better than the two hour average that he holds it when he's wearing the bag.

It's almost 11, and I'm confident that The Boy is going to be awake until at least midnight. I think I'm going to nix the last Elmo episode and watch some anime, mostly because I feel like it. I also have this week's Burn Notice episode, thanks to TiVo To Go, that I'd like to watch.

We're going home tomorrow... I'll get some more opportunities to play with The Boys (and I love typing that) this week!

Saturday, July 18, 2009

Hospital Life

This is going to be an interesting weekend, because we have the "B" team here in the stepdown unit. All of our usual nurses are off this weekend, so we've got a bunch of nurses that we don't know. I mean, we recognize them from the floor, but they've never (or really rarely) had us as patients. It's mostly okay, except for the teeny little things - like the Cozaar coming in water instead of juice or apple sauce or yogurt, and the medicines coming late and all together instead of spaced out.

It's interesting how The Boy will keep his medicines in his mouth instead of swallowing them. He hates some of the flavors, but he'd rather keep the medicines in his mouth (and on his taste buds) rather than swallowing them. It's astonishing sometimes.

We've learned to space the medicines out by 20 minutes or so, because several of The Boy's medications tend to rebound and bring friends. This has lead us to take the entire cocktail several times, so now we've learned our lessons. Tonight, for instance, the Cozaar came rebounding up, bringing with it The Boy's late dinner of apple juice and Cheerios. Not good.

Today? Okay day. His blood pressures have been through the roof for no appreciable reason. From 2 until 4, he rested and played a little bit. From 4 to 6, he napped. From 6 to 8, he was cranky and sleepy, and he sat in bed and played with his puzzles. From 8 to 10, he played on the floor with his toys, including some naked time to air out his poor, rash-covered rear end. This resulted in two liquid poops on the floor, but that's not a huge deal. Change the hospital gown, baby soap & water to clean his legs and rear, and bleach wipe for the floor. Since 10, he's been in bed, getting antibiotics and medicines and otherwise getting ready for sleep. It's 11:50 right now, and I don't really think that he'll be asleep much before 12:30 or so. We'll see.

Decent night...

The Boy had an okay night, Grandma said. He was awake at around 5 to eat some crackers and jelly and juice, but he went back to sleep. He took four doses of procardia, the rescue blood pressure medications, but it was a diastolic pressure in the 80's, not the 100's. That's an improvement, I guess. His BP at 10 was 100 over 56, which is exactly what we want. BPs like that, and we can go home on Monday when his antibiotics are done.

We went for a walk to the Farmer's Market this morning, which was fun. I'm just messing around on the computer right now, and I'll shave & shower & hit the road around 1PM. The Wife and Younger Bro are coming for a while, and that's a good thing. The Boy needs to see his family.

Anyone around tomorrow, to come visit? I'm by myself all day.

Friday, July 17, 2009

Drunk baby

Younger Bro had a nice bight with us tonight. Twice, I saw him drink himself unconscious on milk... where he'd kind of pass out, asleep, with milk drool going down his chin.

Reminds me of college.

Heck of a day...

Not the greatest day today.

Post-surgery, The Boy took a REALLY long time to wake up - like, along the lines of an hour an a half or so. This is not good. Jumping ahead in the story, I'm not too thrilled about the sedation job that they did on him. He was still stinking of anaesthetic when we left the hospital at 4:30PM, a full eight hours after the surgery took place! I mean, he wasn't feeling pain, but he also was stoned for a long, long time.

When he woke up, so to speak, he was breathing very fast and very shallow, with a hitch in each breath. I'm a lifelong asthmatic, so I know it when breathing is wrong... and this was wrong. His throat was also torn to shreds from the inside, as a result of having a breathing tube put down there during the sedation. He wasn't eating, wasn't drinking, was overly sleepy and clingy, blood pressures WAY WAY WAY higher than usual, and not particularly conscious. Not a good thing.

We went down for a chest x-ray, and they found fluid around his lungs - not pneumonia kind of thing, just a huge excess of fluid in his body. They put him on lasiks, which gets rid of the fluid. That seemed to work, as he was resting quite comfortably when we left.

I went home and passed out for about three hours, as did The Wife and Younger Bro. Now, we're catching up on a little bit of TiVo while we entertain the newborn. Tomorrow, we'll all spend some time with The Boy, and I'll camp down in the afternoon to be with The Boy until he leaves the hospital. Grandma goes back home on Sunday, so it's back to us.

Anyone around on Saturday night or Sunday? I'm going to be by myself at the hospital, and I'd love some company.

Port!

The Boy is currently in surgery, getting his new port installed by the same Dr. Bethel that removed the last one. I'm a little concerned, because he's been low on platelets all week, despite a couple of platelet transfusions. Surgery on a boy that doesn't stop bleeding easily...

Still, I'd rather get this done quickly. The IV line is not fun to deal with and is considerably more complicated than the port.

We first find out about the surgery until dinner time yesterday. We didn't find out the time until around 9 or 10 o'clock. That's fine. Less time to worry about it.

Younger Bro has a pediatrician appointment at 12:30, so The Wife is home with him while I'm here. Grandpa is here with me.

Urgh. I hate surgery days.

Thursday, July 16, 2009

Entertaining...

So, Jessica is our night nurse tonight. She's cool, and we get along wonderfully. The Boy was standing on his playmat, building a tower out of his stacking blocks, when Jessica asked him, "David? Would you like to take your medicine now?" His response: a loud, wet poop into his diaper. It was so wonderfully timed.

Late last night, The Wife, Younger Bro, and I were on the way back from the hospital, where the two of them were spending time with The Boy and Grandma while I was attending to family business. Younger Bro hates the car and was way, way overtired and overstimulated from his evening. He was screaming, screaming, screaming while we played the barbershop quartet music that normally helps soothe him. Acoustix, the championship quartet, was singing their Simon & Garfunkel medley, "It was the sound...." Younger Bro stopped crying at exactly this moment: "of silence." Again, he had to have understood the words and planned to stop at that exact moment. Irony, at 10 days old.

It's 9:45PM. The Boy has surgery at 8:30AM tomorrow to replace his port, so he'll be NPO from 2:30AM forwards. That's fine. He slept this afternoon from 2PM to 6PM: normal nap transitioned into Benedryl-induced slumber. He'll be awake, my prediction, until midnight or so.

Wednesday, July 15, 2009

Family Matters

Dr. Rifkin made an important point back in November, when we were told our treatment schedule for Wilms relapse: She said that she'd seen more families torn apart than brought together by the stresses of caring for extremely sick children. I kind of understand, being in the middle of a process of refereeing a title bout between my wife's family and my family.

The good news is, neither my wife, my sons, or I were the ones that caused this particular issue to happen. Granted, a telephone call or two from me before The Wife gave birth could have averted much of this; but that's beside the point.

The important thing for everyone to understand and to deal with is the fact that none of this is about anybody's ego. It's entirely, 100% about caring for The Boy. It's hard to recognize that sometime, because people's emotions take command of their actions, and everything involved with this is highly emotionally charged. I flip out because of stress, someone else picks up on that and strikes out at someone close by, meaning to help the situation... and that throws a match into a gasoline can. The resultant explosion never hurts just the two people involved; it always hurts those innocents who happen to be nearby.

Anyway. I'm glad this one wasn't my fault, even if I hate having to take time away from my family to deal with it. My wife has been really, really hurt by this; thoughtless remarks made in the heat of battle can hit post-pardum-hormone ears like a ton of bricks. Suffice it to say that the first two weeks of Younger Bro's life have been made considerably less joyful than they should be.

He does seem to be getting better!

Today has been a very nice day so far! I had breakfast brought to me by The Wife while I was helped Younger Bro rest, which was a real luxury. We hung out for a while, and I messed around on the computer to find new stuff for The Boy to watch in the hospital. At 11, we got a call from Grandma saying that a volunteer from Chai Lifeline came by to help out, so we didn't need to rush to the hospital to relieve her. We celebrated by taking a nap, Mommy and Daddy with Younger Bro in between us. Would have been nicer with The Boy, but we'll take what we get.

I left for the hospital at 12:30, and I arrived to find The Boy sitting in bed wearing half a diaper and a urine bag. That's a bag that fits over his genitals to collect a clean, sterile urine sample. He had to stay still so the bag didn't slip, which has happened before. Now, The Boy is a stubborn kid - gets that from me. He can really hold his urine when he's bagged up, and this was no exception. Took him an hour and a half to pee, and he celebrated by pooping at the same time. Lynnmarie (the nurse) and I got everything straightened out.

Soon after, the music therapist came by, and - at the same time - The Boy got unhooked from his IV line. We sang a little bit and played some drums; The Boy played the drums, but isn't so much into singing yet. When the music therapist left, crazy baby time started. That was almost 90 minutes ago, and he hasn't stopped yet.

It's really nice to see. He's walking from one end of the room to the other and playing with stuff. I don't know how long he'll be off the IV; he'll definitely be back on for the vancomycin, but if he keeps pooping at the prodigious rate he's going, then he'll be back on the IV sooner than that to keep hydrated. He's pooping about every half hour, which isn't good.

But, back to the good stuff. He's running around a lot, and he's playing with everything that we've brought with us. Books, puzzles, play-doh, blocks, legos... you name it! He even put together the wooden numbers puzzle upside down, which was really impressive.

I'm still violently not looking forward to going to my brother's tonight, but this afternoon is making it somewhat more palatable.

Tuesday, July 14, 2009

It'd be nice if he was getting better.

Last night, it was a relatively easy night. The Boy fell asleep without issue at approximately 10PM, and he stayed asleep for most of the night. I, on the other hand, have hit that "too tired to really sleep" thing, and I didn't fall asleep until after 2AM. The Boy woke at around 1:15AM because the nurse had to give him rescue blood pressure medication, which he gets whenever the diastolic pressure (the bottom number) is 80 or above. I was watching the end of the penultimate episode of the first season of Dollhouse (thank you, TiVo To Go!), and he watched the end and the final episode of the season.

(Quick review: it's Joss Whedon. There's LOTS more stuff going on in every episode than is immediately apparent, and you know the action is going to be great. I liked it a lot. Not as much as Firefly, but more than Angel.)

We woke around 8AM, when the nurse came in to poke and prod at The Boy some more. He didn't eat his breakfast; somehow, we got switched to the Kosher menu from the Renal menu, which meant that all of the food came in with more salt than he's used to eating. So, he didn't eat any of it, choosing to fill up on apple juice and a thing of special K cereal.

My father came by around 10:30, and he stayed for an hour. Right before he was getting ready to leave, I walked around the bed and noticed... well, The Boy pooped through his diaper, diaper cover, and two beddings. So, we had to clean off a squirming and screaming child, which was difficult because his little butt is SO red and sore that it's painful to the touch. Then, we had to change the linens and clean the bed mattress. We got The Boy changed, and the nurse and housekeeping (who happened to be in the room anyway) got the bed cleaned and changed. It took a while, because the floor was out of linens. The Boy was quite traumatized by the cleaning and the pooping, and he eventually fell asleep on my shoulder.

Here's why hospitals suck: 11:20, he falls asleep. 11:30, my father leaves. 11:35, the pediatric attending came in with the residents. (They really are frightened little bunnies, like the guy in Scrubs says.) They asked questions and the attending listened to his chest and explained to me some stuff that I proceeded to then explain the remainder to her, because I heard from Dr. Kamalakar and she hadn't. They left at 11:45. At 11:50, the guy from Chai Lifeline came in to drop off food. At 11:57, the nurse came in with the linens and made the bed. At 12:10, the rabbi came in to check on us. At 12:20, the nursing supervisor came in to ask about the bris. At 12:35, the nephrologist came in to talk about The Boy. At 12:45, the nurse came in to do blood pressures and temperature, and he had medicine due at 1.

All wonderful people, all wonderful reasons... but not leaving us alone! How could I catch up on my needed sleep with that going on? How could he sleep so well with people coming in and out, touching him in different ways. It slows down some at night, but the nurse is still in once per hour or so.

Anyway. On to the good stuff. He's getting a little bit better, but it's two steps forward, 1.9 steps back. He didn't eat for much of the day due to the strangeness of the meals, and when he ate his dinner, he puked it back up. He had a finger stick for a CBC, and the guy didn't know that he was low on platelets. Long story short, he bled all over the place. His blood pressures are high, and he's retaining fluids... but, he's taking in so little nourishment and letting out so much urine and feces that they have him on fluids all the time. His blood pressure is so high that he's agitated and irritable, yet he has no energy. It's a lose-lose situation.

Younger Bro is doing fine, all things considered. He's a newborn. He cries a lot, he poops a LOT, and he eats a lot. That's cool. He's pretty strong and pretty big: he moves his neck and head around a lot, which is nice. My wife gave him some tummy time on the floor today; he actually fussed and fussed and accidentally rolled himself over, which is pretty good for a 10-day old baby. The Boy took 21 days to do that, the little slacker.

Tomorrow, I sit down with my brother and try to defuse the family situation that erupted at the bris. I'm kind of irritated about it, because I have better things to do than to travel to the north side of the state for a sit-down about a situation that I didn't start, didn't participate in, and didn't cause. Still, it has to be done, and I seem to be one of the few people that can keep my eyes on the prize (The Boy's health) and keep my ego out of the picture. Let's hope I can - I'm not particularly optimistic, because some mighty hateful things were said. I just hate having to travel and take the time away from the people that really need me in order to do this.

But, I'll have a really nice day. I'm going to take Younger Bro for a walk to the comic book store, and I can spend time with my wife. I know the afternoon with The Boy will be fun, and after my "meeting," I'll spend the night with The Boy. He's a neat kid, and lots of fun to be around. LOVE those snuggles...

Monday, July 13, 2009

Infection update

Interestingly enough, his urine is showing bacteria. Dr. V says that it isn't a urinary tract infection - what is popularly known as a UTI - but an infection in the urinary tract, if you can appreciate the difference. Likely it was just caused by being so neutrapenic and having such low counts, and they'll do a urine culture after a couple days of the sepamine antibiotic.

Doctor update

I'm with The Boy for the morning, afternoon, and post-dinner. He's snoring softly, curled in a little ball next to me, with one hand and one foot on my belly. He loves touching bellies - skin ob skin contact is wry comforting to him.

The doctor said that it is extremey unlikely that he'll receive chemo this week. They need a port installed before they'll do the carboplatin, and that won't happen until he's healthier. Probably, late this week or early next week, they'll call us up and say "port today!" with chemo to follow.

His temperatures are down, and he slept well last night. One of the Valerie Fund nurses will be up in an hour to reestablish the IV line in his arm so that he can walk and stand.

Morning Musings

Last night, The Boy's temperature dropped to the mid-99's (remember, add one degree to that because it's being taken axillary - under the arm), and he perked up and began playing very nicely with Grandma and Aunt W. We had a webchat before we went to bed, and he was lots of fun. He recognized us and talked to us, pointing out the various letters on the computer keyboard and trading kisses on request.

Younger Bro had a good night, with feedings at 10, 12, 2, and 5. That's not too bad, as he fell asleep pretty quickly after all feedings until the 5AM feeding. He and I have been hanging out together this morning and letting Mommy sleep, as it's her birthday and - regardless of the date - she deserves it. We're probably going to go out to dinner for her birthday today - we have a gift card for the Cheesecake Factory.

The bris wound up happening quite well yesterday. The video feed went through without a hitch, even though my father couldn't log in from California. The Boy was there through the entire ceremony; we used the treatment room in the PICU for the ceremony, and there was about 12 people in there with us. We had a nice representation from both families and from our friends, and the food was quite nice.

The only issue was one family member mouthing off to a family member on the other side, and the focus therefore shifted from Younger Bro's celebration to a family religious war. The best part, besides the cussing out of said family member in front of The Boy, was the cussing out of me (not involved in any of these proceedings, incidentally) in front of the entire party. It was kind of frustrating, particularly since a few really hurtful things were said about my wife, who also was not involved with the fight.

Frustrating, because now I need to spend five to ten hours of my time trying to fix this instead of, oh, I don't know... spending time with my babies or my wife.

I have a newborn baby sleeping on my chest. He's very cute. This morning, Younger Bro actually smiled at me! It was really, really cute. He likes my index finger and seems to enjoy chewing on it for lengths of time. He occasionally finds his fingers to chew, but he's not quite there yet.

Sunday, July 12, 2009

Sick. Again.

100.3 temperature, extremely high blood pressures... irritability, lack of appetite... looks like we have another infection. Maybe the surgical site? Maybe another staph infection that isn't affected by the vancomycin?

Doesn't make sense that he's getting worse instead of better. Can't wait for the real doctors to get in and tell me what the hell is going on.

Here we go again...

It's 1:30AM, and we're still awake. The Boy alternates ten minutes of sleeping with ten minutes of screaming, and he's done this since about 10:30PM, when his blood started. He's been quiescent for about ten minutes now - the bed is at a 70 degree angle, so I'm sitting up, and he's sitting with his chest against mine. This isn't the best way to spend the night, but - if it's what we have to do - then it's what we have to do.

The butcher resident came in. She's a little scared of me right now, and I'm kind of okay with that. Basically, she said he sounds "crackle-y," and she'll check his chart and call an adult. Stupid residents.

Gut instinct says a chest x-ray is in the cards for tonight. We'll see what happens. I have a feeling that I'm up until tomorrow afternoon, minimum. Good thing I don't have a newborn at home, so I can get a full night's sleep Sunday night.

Saturday, July 11, 2009

Crap Week, redux

Man... what a frigging day and night. This is one of the myriad reasons that being a cancer parent sucks. Don't get me wrong; I love my boys, and I love The Boy deeper and more passionately than words can express. I'm just frigging irritated and have been for 36 hours now.

My family hasn't been helping. I've received a nice helping of crap sandwich from both ends of the United States this week, as the "ask for help when you need it" has nicely backfired into the "we're not going to be around until you call us." That's great, except for the fact that I've been sick, my wife's been sick, and we've have two kids in the hospital. Doesn't give us a lot of time to pick up the telephone, particularly when said family tends to have the absolute worst timing when they call (like, right when someone is about to actually sleep). Passive aggressive political games are not helpful.

The Boy started spiking a fever last night for some reason, which hasn't helped his mood. My opinion is that it's related to pain issues from the surgery - when I had a minor bit of surgery, I was given 30 percoset. He's had nothing since his. Although, tonight, he's had a continually running nose, so he might have really caught my cold from last week. He was sleeping poorly, waking regularly all night long; that helped my rest considerably, as you'd imagine.

Factor that in with today's debacle. His IV line in his left hand clotted up amd had to be removed. A butcher of a resident came in to try to reinstall the IV.

Folks, NEVER let a resident touch your child, particularly without the supervision of an adult. (Meaning, THEIR mommy or daddy.) They're stupid and unskilled. After this butcher (who would not wash her hands in my room, did it in the hallway - while still touching the doorknob, natch) got through, we needed a change in bed linen because of the blood that had spattered everywhere. The only thing it accomplished was traumatizing The Boy.

He ate a little bit, then a new group - this time with an adult - started in. The choices were: find a new vein on the left hand; try his right hand, which means no thumb; or do the foot, which means no walking or standing until Wednesday. Long story short, the second group screwed the pooch on the left hand. The third group - with a competent person - finally put the IV in his foot.

Great - active two-year-old, can't walk, can't stand. If he does, the line will fall out, and we'll have another two hours of pain and suffering until the new line is put in.

This was TWO HOURS of having my son on my lap, screaming in fear and pain and terror and agony, writhing as he was jabbed again and again by these "professionals." Literally, screaming until he pooped himself. After which, of course, he puked up his medicines. Not a banner evening for the pediatric unit at St. Barnabas.

I'm grumpy. I'm not feeling well. I'm severely under-slept, and I'm really resentful of what I feel is an utter lack of support from the family. F everything.

Friday, July 10, 2009

Irritation

The Boy's blood pressure readings were 130/101, which is almost emergency-level high. That didn't make sense, as he's had readings around 100/70 (almost normal for someone his age) all week, and he'd just woken from a nap. The skinny? It took four blood pressure readings to get that, as the first three didn't work. Total time? 18 minutes to get it.

For those keeping score at home, that's 18 minutes of trying to keep The Boy motionless, with a cuff cutting off circulation to one leg, then the other, the his arm. We took a 10 minute break, then the nurse came back. The first blood pressure reading - which took 8 minutes to get - was 170/141, which is not really possible without his heart just kind of, well, exploding out his nose. The second blood pressure reading, I cut it off after 12 minutes of squeezing his arm.

He's only got one functional arm right now, as the IV line in his left arm has the arm wrapped and motionless from the palm of his hand to his elbow, so he doesn't accidentally rip it out. So, when his right arm isn't usable because of blood pressures, he's got nothing to use to play / to drink / to eat.

I know I shouldn't be mad at the nurse, but I am, because I have seen these issues with the machines with her on several occasions, whereas most of the nurses never have these issues. It makes it worse that she NEVER closes the door when she leaves, no matter how many times I ask her. I know my mother-in-law likes her a lot, but she isn't one of my favorites. Lovely lady, not such a hot nurse.

The Boy is now sitting in his high chair and kind of flailing away at stuff, very good-naturedly. He's yelling "Dah-Dee!" as loud as he can. It's very cute. We've had a nice day - great playing, two big poops within ten minutes of each other (the second squirting out the sides of the diaper - nice job, Boy!), lots of talking, and a little bit of video, which I'll upload later to Youtube and post. I want to get some of him reading his letters and numbers for all y'all.

We're watching "Bunnytown" right now, which The Boy is kind of lukewarm about. I don't want to watch the Elmo movies any more at this moment, because I've watched five of them today. He's not eating his dinner, and he didn't eat much of his lunch. He did eat an entire apple cereal bar, which was nice In short, he's acting like a true toddler right now, and I love it, pain-in-the-rear bits and all.

Hanging out with my boys

I'm back at the hospital, hanging out with The Boy. Grandma just left to go spend time with The Wife and Younger Bro, leaving us for a nice guys' day and night.

Last night wasn't bad at all. YB would be up to feed every hour and a half, give or take. When hewas done feeding, we burped him and soothed him back to sleep, which took anywhere from five minutes to a half hour. Not bad at all.

YB, unlike The Boy, doesn't seem to like being swaddled. Maybe he got used to the freedom because he was unwrapped in the lights for so long? Anyway, Musical Daddy is still a baby tranquilizer, and that helped quite a bit.

I brought the camera today, so I can take somee movies of The Boy counting and stuff. Should be fun. Updates to follow.

Thursday, July 9, 2009

May I Have Your Attention Please...


I've just been pooped on rwice by Younger Bro, in the space of five minutes. Good for you, boy - that's your job!

That is all.

Feel a little bad...

One of the difficult things about this entire situation is the lack of quality communication that I've had with family, friends, et al. I feel badly about the fact that I haven't been able to give everybody the attention that they've deserved and needed, but the simple fact of the matter is that I've been a little bit swamped with everything that's going on around me. Between The Boy's infection and surgery (and dealing witha hungry, cranky toddler for seven and a half hours of no-eating time), Younger Bro's bilirubin issues and hospitalization (not to mention the normal newborn issues, like irregular sleep schedule, irregular eating schedule, and overall floppiness), The Wife's recovery from giving birth, and my own health issues (asthma flareup, vocal issues, and the cold)... well, I've been quite busy.

We've got the bris coming up on Sunday, and it should be an interesting experience. We have a small room up on the pediatric floor to do the ceremony, and it can only hold 11 people plus The Boy, who will be wearing a breathing mask. We also have access to one of the cafeteria rooms, which will be closed because it's Sunday afternoon anyway; that's where the food and the party will be, and we're trying to figure out if we can simulcast the bris down to the cafeteria on the big-screen TV. We're not entirely sure who the godparents will be; I have a candidate in mind, but he might not be there because of a prior engagement, which means that another candidate will be chosen. We'll see. My father won't be there, which is immensely disappointing to me, but Saturday and Sunday are the only days that he can see his other granddaughter, so there you go.

The topic of how people can help has been coming up a lot recently, and we'll see what we're doing about that. In the meantime, there's a baby that needs some attention. Younger Bro needs it, too.

Frustrating.

So, as expected, The Boy didn't go in for his surgery until well after noon. Nothing like dealing with a cranky, hungry two year old who really wants to eat... it makes me wonder, sometimes, if any of these people have ever had children or dealt with children.

We moved from our room to the surgical waiting room at 12:20, and we sat there for an hour and a half. The Boy was scared and nervous, resting on my lap with his thumb firmly implanted. He fell asleep around 1:30, and Mommy showed up soon thereafter.

I didn't realize exactly how frightened I was until she got there. I mean, it's minor surgery. Not a big deal. Except that I actually read the dangers of surgery section of the consent form and have a vivid imagination.

Surgeon came out - it's done, no problems. I have to wait to go see him, as he's not awake from the anaesthetia they gave him.

Nowthat boy can eat. We should be able to take Younger Bro home today, which would be really nice.

Wednesday, July 8, 2009

Surgery

One of the more endearing qualities that The Boy has is his ability to point out the various parts of his body. He's started, recently, saying, "Port!" and pointing at his left breast, where his port is.

Considering the infection that has caught us three times in a couple of months, they are going to take The Boy's port out tomorrow morning. Minor bit of surgery, considering that they're also putting and IV line in his arm.

His LEFT arm. We marked it already. No repeats of the initial diagnosis, wrapping up his thumb. That would be terrible.

Say a couple of prayers. I don't know why I'm nervous about this.

He's sleeping quietly next to me. I don't know if I should wake him to eat or not. He's NPO after midnight, which is 40 minutes from now. If I wake him, he'll go at 6AM. If I don't, he'll go at noon. Argh.

Photo Development

So, here I am, with Younger Bro. He's under the lights, next to the lights, and lying on the lights - they've upped the lumens for this round of treatment. I know the potential effects of too-high bilirubins is bad, but this just sucks.

Biggest problem? When he's screaming, I can't pick him up and hold him. That's not a good thing, because it's hard to comfort a screaming baby without picking him up. Younger Bro has this high-pitched screech that The Boy never developed, and it's really quite... motivating.

He'll likely be fed under the lights as much as possible. I'm not sure how long he's going to be there, and I'm not entirely sure what plan B would be.

Tough week for all of us. Not going to get easier. Thank G-d Grandma is here.

Same floor, different side.


Younger Bro is over in the 4300 side, and we're over on the 4200 side. What's the difference? 4200 is the "Step-Down" unit, and 4300 is just the normal pediatric unit. So, we'll be tag-teaming the babies until we can go home.

Frustrating, but it could be worse. I mean, we're all together; we're all in the same building; and all prognosis are, to the best of my knowledge, good.

The Boy's curled up next to me right now. He's been asleep since around noon. This means he'll be up until midnight...

Can't Win for Losing, Part XXIV

So, making a long story short, Younger Bro is being admitted back to the hospital for phototherapy. Good news? We'll all be in the same hallway. Bad news? More time in the &&&&ing hospital. Argh. We're not particularly worried, but we're worried nonetheless, because he's SO little and SO fragile. We'll see what's happening. I don't know how long he's going to be in, and how long the course of therapy is.

We did sneak Younger Bro up to The Boy's room for a little while. It was very, very cute; The Boy was very nice, very sweet, and very gentle. "Baby! Baby!" he said. He touched the baby's nose and said, "Nose!" The baby's eyes (VERY gently) and said "Eyes!" Etc. He was fascinated by the baby, and The Wife got to snuggle both of her babies at the same time. I know that it's only a matter of time before The Boy figures out that Younger Bro will be splitting his parents' attention and gets ticked off about it, but until then, it's really nice to know that they're getting along.





The resolution's not great, but tough noogies. It's still really cute.

Right now, The Boy's getting blood and platelets - AGAIN - and sleep off the benedryl. We're waiting on more information from the pediatrician about admitting Younger Bro and getting that stuff up and running, so we'll see what's happening.

Tuesday, July 7, 2009

Eventful Day (In a Nice Way)

Yesterday, I got home around 4:45 and went right to bed. I slept, watched some of the barbershop contest, typed a paper up for school, and slept some more. I woke at 7:30AM feeling about 67% of normal, which was a significant step better than yesterday. Drove to Trader Joe's for some hospital groceries, stopping at Panera Bread for breakfast along the way, and went to the hospital.

Younger Bro was off the lights, the doctors deciding that the bilirubins count had stayed the same, which is good. I held him for a while, until he got hungry and started rooting around my shirt for some booby, despite me advising him that he'd be out of luck. Silly baby. I handed Younger Bro off to Mommy and went upstairs.

The Boy was SO happy to see me! It felt really good. He looked fine. He had puked up his dinner last night again, which was bad, but otherwise had an uneventful evening. Grandma went downstairs for some newborn time, and The Boy and I snuggled up for a nap. What a nap it was... one of those ones where he just kind of melts into you, which feels very nice.

In the first half hour of his nap, we had a visitor - by life or by phone - every 4 minutes. Seriously, 7 visitors. First was the man telling about TV BINGO at the hospital. Then the rabbi stopped by for a chat. Then the phone rang with one of my friends. Then the Chai Lifeline people came by. Then the nurse. Then the doctor. Then someone from the playroom (no thanks, we're sick enough). The the phone rang with one of the sisters-in-law. Finally, the world took the hint and we went back to sleep.

The Boy had an EKG today. One of the things that the doctor was checking was the potential for tiny clots to form in the heart. These clots don't interfere with heart function, but they do provide a place for bacteria to gather, which would be bad. Haven't heard the results, but The Boy didn't like it too much. For the first fifteen minutes, he complained loudly and stridently that he didn't want to be there. Then, he calmed down when he started to realize that the person wasn't going to stick him with anything, and he actually let me get up and get him some juice and put Elmo on the television.

The EKG man left, and it was lunchtime. After lunch was the craziest crazy baby that he's had in a while. I mean, full-body tackels. It was really cute and very welcome. He was grinning ear-to-ear, and laughing, and giggling, and climbing all over everything. He was so nice to be around!

Now, I'm sitting in The Wife's bed, with Younger Bro in his plasticrib next to me and The Wife typing on her blog (logicalmommy.blogspot.com), waiting for the doctors to say something. The Boy's Bili count was up to 9.7, which isn't great. Here's to hoping that we DON'T have to leave him here overnight. That would be bad. We're hoping that they'll let us bring him in to be examined, which would be fine considering that we're going to be around anyway, thanks to The Boy.

The nurses down here in the maternity ward aren't very nice. They remind me of the late middle-aged women that I never really get along with at work - the ones that are threatened by my sense of humor and refusal to mindlessly obey their commands. They're kind of bitter and humorless, not anything like the great nurses in the pediatric wings. I can't wait until we're out of here and back to step-down, where we belong.

Monday, July 6, 2009

Day Two

So, in the "Keep On Keepin' On" file, The Boy has been diagnosed with another staph infection. They're starting the vanco today, and he'll be in the hospital for 10 days from his first negative culture. That's really upsetting, but I feel somewhat better in that I know that this hospitalization isn't my fault. He's doing okay, just grumping at everyone in sight upstairs.

Right now, I'm sitting with The Wife in her room. Young Bro is under an ultraviolet lamp for the next 12 hours or so because of mild jaundice. This isn't uncommon - The Wife's blood type is O positive, and his blood type is A+, and that causes a little bit of a reaction. Not a big deal, but frustrating because we want to hold him and snuggle him and get to know him. He's very, very cute. Most distinguishing feature? His feet. He's got enormous feet with long monkey-toes. I mean, he can grab your finger with his toes. It's very cute.

Younger Bro has already tried to nurse on my nose. I think that's funny.

The Wife is doing well, all things considered. She's uncomfortable, but not overly so. I'm very, very lucky to have such a strong woman as my wife.

I'm doing... well, not so hot. This cold has really knocked me around. I slept very, very well last night, but my throat is absolutely killing me. It really hurts to talk, and - with a polyp already on my vocal fold - I really don't want to strain it. I'm drinking lots of fluids and sucking on lots of Halls. I'm planning on going home around 4 o'clock-ish and getting to bed early. We'll see if that actually happens. It probably will, because the grandparents are here. I realize that I'm not helpful if I'm sick and a real problem if I get sicker, so it's best that I go home and rest.

Ironically enough, it looks like getting fired from my summer gig has been a real blessing in disguise. I'm going to be very needed for the next three weeks, and not having to worry about work is a real blessing. I'm glad Younger Bro was born when he was, because we can get settled as a family before I have to head back to work.

Back upstairs to calm The Boy down.

Sunday, July 5, 2009

Thoughts on a Long, Long Day


As we were welcoming Baby Boy into the fold, The Boy was being checked into the stepdown unit with high fever and vomiting. He has the same stomach thing that I've been fighting for the last couple of days, and - considering that he's really nutrapenic - he's checking into the Hotel St. Barnabas for a few days. I don't think this is going to be one of the major long stays, but it wouldn't necessarily surprise me, either. The good comes with the bad, as G-d reminds us all the time. The scales balance themselves out over the long term.

The Boy is doing well tonight. He's not too thrilled to be in the hospital right now, considering that the stomach thing is pretty awful. He feels like he has to poop, but he can't; instead, he's been projectile vomiting. Considering that this really started Tuesday night at the restaurant, maybe this didn't come from one of the germy little people at my former summer gig... Anyway, he's pretty miserable right now.

He'll get blood and platelets tonight, so the Benedryl and Tylenol should help him get through the night easily enough. I'm glad about that. Grandma is with him. When I saw him, he was whiny and mopey, complaining, "Poo! Poo!" That's how we know it's a stomach thing. Hopefully, they'll give him some anti-gas / anti-diarrhea thing to get him through.

The Wife is doing quite well. She did tear in the birthing process, but not as badly as when The Boy was born. Baby Boy is even bigger - 9-4, compared with 8-7, and an extra half-inch long. Think a grapefruit at the end of a toothpick. Still cute, though. She's resting reasonably comfortably. Baby Boy latched right on and started to feed, so that's going well.

This labor was harder on her than The Boy's labor. This wasn't induced, so it took longer to develop and longer to complete. It was very uncomfortable for a much longer time. The worst part of the whole thing was the fact that those little delivery beds aren't made for women her height, and it was just uncomfortable. Having the exericse ball helped until they broke her water, and it took a while to find a position - on her knees, leaning against the back of the bed - that was comfortable.

My niece was there for the whole day. She was wonderful - a huge help to both of us. She's studying to be a physician's assistant next year, so it was cool to have her there. She's also an EMT, which made us feel a little safer. Great kid - smart, talented, motivated, beautiful. Loved having her there - she's a special young lady, that's for sure, and an important part of my life. It was really special sharing this with her.

Baby Boy is doing lots better. He was asleep when I checked on him at 10:30. They cleaned him up nicely and bathed him, and he passed all of his tests with flying colors. Nice set of lungs on him, nice pink color, nice head of hair. (The only boy in the house with hair on his head...)He has more of my wife in his looks than The Boy did, but he's definitely my son. I'm looking forward to getting to know him.

Well, it's now 11:20PM. I'm exhausted, having gotten about 90 minutes of sleep last night and a 15 minute catnap this afternoon (while listening to Classical Baby - the Poetry Show on my iPod). I'm going to try to sleep for about 12 hours tonight, so that I can kick the last of this stupid cold / virus / infection. It's been a long day. I know my wife had a harder day, but I need to get myself in order because - well - I'm the daddy, and I have stuff to do.

(Schoolwork front: wrote two classes' worth of essays in the last two days. Pretty impressive, no?)

Welcome!


Jesse Aaron May, 9 pounds, 4 ounces (3.6, actually), 21.5 inches, born at 6:52PM. Mazel Tov!

Next step?

They broke her water, and she's 7 cm dilated. Not too long, now.

Get a Little Closer...

6 cm dilated, they want to break her water. We're going to wait just a little bit, because once the water's broken, she's stuck in bed until The Event. Half hour more of walking, then pop the balloon and serve him his eviction notice.

And, great job by Joe Girardi, leaving Joba in to get smacked around.

Moving into our own room

1:33PM: We’re in our labor and delivery room. They’ve upgraded the televisions in the last two years, putting small HDTVs in the room. The internet isn’t working, however; I’m getting a clear signal from the hospital broadcasters, but no internet is coming through. Sigh.

The room is set up interestingly. The television is 90 to the left of the bed, so The Wife has to turn on her side to watch it. The visitor chair is underneath the television, and right next to the hospital linens hamper. The television input button doesn’t work, which means that we can’t watch the iPod shows I brought with us. I mean, I can watch them, but she can’t.

I think I’m going to try to catch a little nap while we’re in the boring part of the labor.

2:22PM: Just woke up from a 20 minute nap, which I really needed. Cousin J is here; she might stay until the birth, depending. That'd be cool; she's a neat chick. Anyway, internet is finally working, and Joba is getting lit up by the Blue Jays. Great. Mommy is doing okay; not comfortable, but still jovial. Contractions are coming. She's sitting on the exercise ball for comfort right now.

Active Labor has Started!

We're officially 4 centimeters dilated, so active labor has begun. She'll go on an IV line in a few minutes, and we're going to be admitted. Hooray! Little man, here we go!

Still waiting...

The doctor isn't here yet, but the contractions are definitely getting stronger. You can tell, because The Wife isn't really able to talk or move much during the contractions. They are painful, but not horrendously so. She said it's somewhere between a kick in the nuts and a really good work-to-failure exercise pain.

Better her than me. If it was me, I'd be curled up in a fetal position, sucking my thumb. As it is, I'm sitting next to her and typing up some papers for my schoolwork.

Waiting, waiting...

Still no dilation. Just at 2 centimeters, which is roughly where we were all night. That doesn't make a lot of sense, considering the frequency and uncomfortableness of the contractions, but whatever.

Not impressed with our nurse. She scared the crap out of her / us by saying that she thinks the baby turned and is breach, despite the evidence of the last three ultrasounds. I understand if the nurse is concerned, but she probably should have kept her mouth shut and told the doctor to check.

If stuff hasn't started to move in an hour, we're going home again, to try back later or tomorrow.

Take two...

Last night, we checked in, got hooked up into the monitors (get to see lots of nekkid Logical Mommy, which is always nice), had a physical exam. They told us that she was only a centimeter or two dilated, so we should go home. Given the choice between being uncomfortable at the hospital or uncomfortable at home, home is always a better choice. We got home around 9:30 and sent Uncle P home. The Boy was still awake and greeted us quite enthusiastically at the door: "Dah-dee! Dah-dee! Mum! Mum! Dah-dee! Mum!" He actually bounced, which was cute.

We put The Boy to bed, and The Wife proceeded to walk slowly around the upstairs floor while I sat and did work. I'm on the last three classes of my degree, and one of the classes is creating the research prospectus that I already did at the beginning of April. So, I rewrote parts of it according to the exact specifications of the project, and knocked off four projects totaling around 130 pages of writing. (Much of it repeated.) Grandma & Grandpa arrived from Pittsburgh a little before midnight (less than six hours after they left!!!), and The Boy woke up because he was excited.

Last night, I had a bout of insomnia. Don't know why - laid off the caffeine after 4PM, didn't have any sugary food or chocolate or anything. Took a sleepy pill around 3AM, didn't do anything. The Boy woke up at 5AM, and I played with him until 5:30AM when The Wife got out of bed. I slept then, until 7:30, got dressed, and we left for the hospital, stopping at Coffeebucks on the way.

So, we're checked in, the monitors are on, the nurses are asking the same questions they did last night, and the doctors will perform the same horrendous physical exam. The physical exam, as the women know, consists of jamming their fingers up through the birth canal and sticking them into the mucous plug at the cervix to see how much things have started moving around. Yuck.

Should be an interesting day. Fortunately, I've developed the talent of functioning well with no real sleep. I also have a Diet Mountain Dew and an Energy V-Water in my bag, not to mention the McDonalds downstairs, which has surprisingly good coffee. Wish us luck.

Saturday, July 4, 2009

False Alarm

Heading home. There's nothing to see here.

Here we go...

On the way to the hospital! Hooray!!!

Labor's starting?

Looks like labor is starting - Mommy's been having contractions all day. Doctor said to wait a little longer, which is fine by us. Uncle P is on his way down, and Grandma is getting in the car right now.

We might be meeting the newest member of our family soon!

Friday, July 3, 2009

Fourth of July

Last year at this time, we were just getting home from the hospital. It was an awkward and mostly awful time, all things considered, so we didn't go out to see fireworks.

Man, that seems like a heck of a lot longer than merely a year. So much has changed! The Boy is twice the size he was back then, and he's so much more of a little person as opposed to a baby. He's walking, running a little (first running steps: in the Valerie Fund Center, attached to an IV. I don't remember sprinting across a room quite so quickly, to catch him before he yanked the port right out of his chest), talking words, and doing a lot of things independently.

We've changed, too. The house is kept differently. We're more concerned about sterilization, and we're more cognizant about cleanliness and germs. That's not to say the house is organized - my job is home organization, and I've been horrendously busy with my school and my dissertation. But, we're clean and mostly sterile. At least, the things that The Boy has picked up hasn't been from us, we think.

Pediatric cancer is a lifestyle changer. Amazing.

It's been a relatively uneventful week. There've been two projectile vomiting incidents, one caused by the Cozaar medication and one at the Cloverleaf Restaurant in Caldwell. This morning, he was chewing on his Pop-up Pals toy and caught his lip, causing it to start bleeding. Because of his platelet count, it took about fifteen minutes to stop. That wasn't fun. This evening was an uncomfortable one; he was achy and sore, but not feverish. He had a hard time falling asleep, but settled down quicker once I joined the two and a half of them in bed.

No news on the labor front. The Wife has been feeling contractions for a while now, but nothing major. She's only really aware when she puts her hands on her belly and feels a tightening with her hands. It wouldn't necessarily shock anyone if she delivered tomorrow, considering that we really can pinpoint every important date - date of ovulation, date of start of cycle in October, date of conception... (Yes, son, you were the result of the only time that your parents were in the same room and conscious that month)

I wonder if more babies are born on the due date, before, or after? Take out the real preemies, in this factoring - I'm talking full term. Preemies are important, don't get me wrong; but that usually indicates that there's a problem somewhere. I'm talking those blessedly normal, uneventful births. Probably before, because there's more room... but it wouldn't surprise me if the normal number is, like, 1.4 days late or something.

We'll see. It should be fun.