Rant: paper or plastic

These days, it's more like plastic or plastic. When did I lose my choice in this process? By the time I get a word in to ask for paper, they've already packed half of my stuff into plastic. Oh, and what a fine packing job it is. At some point, a memo went out to every clerk in every grocery store across the country: one item per bag! What's up with that? You're telling me that you can't make the mental leap to bag the cream cheese with the frozen peas? I didn't break that jar of pickles on aisle 7, don't take it out on me. Something is wrong when you buy 50 items and leave with 51 bags. And don't get me started on the highly toxic "non-food" items. The last thing I want is that radioactive bar of soap in the same bag as my box of Cheerios. No, no, no. Better safe than sorry ... give me a bag for each.

Antics

Regan is developing quite the personality. She has developed a couple of interesting behaviors recently.

The first thing is something we call the "Poop Alarm." Basically, we know the very second that Regan poops because she lets out this weird little gasp. It's a similar sound to the squeals of excitement that she makes, but instead of exhaling while doing it, she inhales. Quite peculiar. I'm not joking about the fact that she does it right away, either. In fact, I can't remember the last time that we discovered a poop diaper on our own. It's funny, because she's basically saying, "how dare you let me sit in this foulness."

While the Poop Alarm is 100% cute, this next thing is 95% cute and 5% annoying. When Regan wants to eat, she wants to eat! During the day, we get the courtesy of a clue (e.g. hand in mouth). At night, however, look out. She totally freaks out until you get the bottle in her mouth. This is particularly interesting as your half-asleep trying to make a bottle while holding her. She's thrashing around, screaming, and tears are flowing from her eyes. I know it may sound sad, but she's completely happy as soon as she gets the food. Pretty funny stuff.

Oil Change

Here's a picture of Ryan's big day. The syringe in the middle of the picture contains ~60cc of stem cells captured from umbilical cord blood.

D+6: Cheryl returns (for real this time)

Well, last night was pretty brutal. Ryan, extremely restless and agitated, slept for about an hour. I slept for about 15 minutes (more on that later). It just seemed like he could not get comfortable. He was kicking his legs like crazy and thrashing his body around. One thing that we've been struggling with is whether or not he's in pain. I've given this a lot of thought, and I don't think that the restlessness results from pain. It's more like a Charley horse, but throughout his entire body. We have tried a number of sedatives and pain medications to address the issue. None have worked well up to this point. Which reminds me -- Ryan dabbled with morphine for the first time last night (with no success).

Ryan finally fell asleep around 3:30am and I curled up at the bottom of his bed. About 15 minutes later, I was awakened by the sound of Ryan's pulse oximeter alarm (it beeps if his oxygen saturation dips too low or if the contact is removed from his toe while the machine is on). So I looked up to see what position Ryan was laying in. Ryan wasn't in the bed. I froze for a millisecond (which seemed like 10 minutes) trying to reconcile what I was seeing against what I knew to be possible. I start looking around the room and I see Ryan sitting down right next to the bed. He had fallen off the bed. You can't possibly imagine how terrified I was at that moment. I picked Ryan up and set him on the bed. He wasn't crying and I quickly checked his lines. They were all in place and there was no evidence that they had been pulled out of his chest. Keep in mind that we're talking about a 2-3 foot fall, while sleeping, with plastic tubes coming out of your chest anchored to a 90 lb. machine. I think there are roughly 100 or so potential scenarios that involve Ryan falling off the bed. Only one of them results in (a) lines staying in Ryan's body and (b) no significant damage to Ryan's head/organs/etc. Given everything else going on right now, it seems strange to say that we got lucky last night, but we did. Big time.

That was the final straw for me. I was totally burnt from lack of sleep and insane stress. I called Cheryl at 6:30am in pretty bad shape. Luckily, she was feeling better and was able to come down later in the afternoon to relieve me. The rest of the day was pretty uneventful. Ryan managed to grab a nap or two during the day. We also spoke to Dr. Graham about some new things we could try to get Ryan's restlessness under control. Looks like the Ativan dose is going to go up (actually, same dose but administered more frequently) and we are adding a new drug called Clonopine. The Clonopine helps control blood pressure but also works as a mild sedative.

So, Dad is 2/3 in trips to Ryan involving serious incident. I have to be honest, this one bothered me a lot. Ryan is completely dependent on me to look out for him and I failed in a fundamental and inexcusable way last night.

D+5: Cheryl's triumphant return ...

... not.

We think that Cheryl is officially well again. Only problem is that her nose runs like crazy when she wears a mask. This kind of puts us in a difficult position. Is Cheryl still sick? Probably not. But what if there is a little remaining virus in there? I guess she could just let all the snot accumulate around her mouth and nose inside the mask (kind of like she does at home). After some debate, we decided that Cheryl needed to hold herself to a higher standard of hygiene around Ryan. So, I'm going to extend my stay a bit and Cheryl is heading back to Phoenix to see Regan.

Ryan is hanging in there. All of the hair on the back of his head is gone and the sides are going fast. Interestingly, the top is still in good shape. The pillow must be rubbing it off while he sleeps. His eyebrows and eyelashes are still in good shape, so I'm not sure if those will go or not. I think Ryan is really beginning to feel the effects of a toxic chemical regimen, continuous sedatives, parainfluenza virus, and a nonexistent immune system. I still get smiles on a regular basis, but he seems kind of agitated and sleepy a lot of the time. Of course, I feel that way too, so maybe it's just a lack of sleep.

From a vitals standpoint, Ryan is still in good shape. Blood pressure spikes occasionally, but it responds quickly to medication. His temperates creeps up from time to time, but no major spikes. His oxidation is a continues to be a concern, but that too responds well to supplemental oxygen.

Ryan's constant companion

I figured that we talk about Ryan's IV pole so much that y'all might appreciate a picture. Ryan's lines come out of the bottom of this thing and extend about 4-5 feet up into his chest. At the time this picture was taken, 7 separate lines were feeding medication into him at one time. Note the 'double decker' configuration. Apparently, it is not uncommon to end up with a triple or quadruple decker setup at some point in the process. Needless to say, it's a challenge to pull this thing around on Ryan's walkabouts.

All Dressed Up

Here's a cute picture of Regan.

Ugh

That's how I feel right about now. We had Regan's two-month checkup today and it was not a fun experience. Actually, everything was pretty cool up until the dreaded vaccines. We had a grand total of 5 vaccinations today, delivered via 3 syringes. Regan was delighted to receive said vaccinations. She smiled and laughed the entire time. Back to reality. Regan started screaming *before* they came in with the shots. In my limited experience, I swear that kids have ESP about this sort of thing. Anyway, things managed to unravel from there. Regan screamed like crazy (naturally) when they shot her up. By the time we made it out to the car, she was actually calm again. She was kind of fussy the rest of the day, which is pretty standard fare for post-vaccination behavior. Then 3:30 rolls around and she comes unglued! She started to scream like crazy, in a way that frightened me because I had never really heard it before. This kept up for about an hour. I spoke with a nurse at the doctor's office about what was going on. She said that they occasionally see this kind of thing and to basically grit it out with liberal doses of Infant Tylenol.

Regan fell asleep (probably due to exhaustion) around 5:30. She slept right up until 9:00, when I kind of poked her awake to eat. This is one of the situations where being a hopeless neurotic actually works against you. I'm freaked out when she's crying, and I'm freaked out when she's sleeping. I actually got her to smile a bit after she ate, so I'll just have to be satisfied with that. I think everything will be OK, but the last thing we need is more drama in our lives at this point. Regan needs to return to 'perfect baby' mode ASAP.

Goo!

I swear that Regan is trying to talk. Aside from her normal smiling, she does this thing now where her lips get all contorted and she eventually forces out a little sound. To be honest, it kind of looks like she's going to wretch. Luckily, a cute little 'Goo' sound comes out instead of a bunch of sour, stinky milk.

Octopus love

Ryan did this really funny thing when he was a baby that annoyed Cheryl to no end. When he reached the age where we was supposed to smile, he absolutely refused to smile at his parents. As it turned out, he preferred to spend his smiling time with a black-and-red toy octopus that dangled from his Gymini. It wasn't a big deal at first, but the more anxious Cheryl got about it, the more he did it. Ryan and I definitely share the same sense of humor. At any rate, Regan is a bit more liberal with the affection. The bounds of her love apparently extend past the toy animal kingdom. The best time of day for her is the morning. She wakes up and she is just all smiles.

Hi!

First known picture of Regan to escape the Babo compound. Damn Paparazzi!

Don't forget Regan

We are going to use the blog to keep people up-to-date on Ms. Regan's exciting life as well. I was actually going to do a big entry tonight, but it's getting late and she is already stirring in bed. Regan still manages to get up 3-4 times a night, so sleep time is best not wasted. Check back tomorrow and I'll have some new stuff up.

Absolute Neutrophil Count (ANC)

As Cheryl and I document the transplant procedure, you will probably here a lot about Ryan's Absolute Neutrophil Count (ANC). The ANC basically serves as a measuring stick for Ryan's immune system. The purpose of the transplant preparatory regimen (chemo, etc.) is to essentially destroy Ryan's existing immune system. The transplanted stem cells then 'grow' a new fully functional system in the days after transplant. So, we are looking for the ANC to go down all the way up to the transplant day (technically, it will probably go down for a couple days after as well). We then wait anxiously as it rises when his new immune system takes root.

For extra credit, don't forget to check out the ANC home game!

Bull meets china shop

Ryan and I spent some time together over the weekend, while Mom got some well-deserved rest. I was alone in the hospital with Ryan for 25 hours, and during this time, two things became readily apparent:

(1) Cheryl is an amazing mother. Ryan and I are lucky to have her.
(2) I am a danger to myself and others (namely Ryan).

As Cheryl pointed out in a prior entry, there is a ton of stuff to remember throughout the day. You've got meds, mouth care, meals, chemo, and bathing to take care of while trying to make Ryan feel comfortable and retain some semblance of normalcy. All of this while he's got three plastic tubes sticking out of his chest attached to a 8 ft. IV pole. It was really tough to keep it together with all of this going on. Cheryl says that you fall into a schedule after awhile, but I'm not so sure that's what it's about. I think that she has summoned up a tremendous level of internal fortitude to carry all of us through this process.

Speaking of Ryan's central line (and bringing us to #2 above) ... we had a bit of an incident today. One of Ryan's lines slid out about 1cm this morning. I had just finished giving him a bath, and I had him back on the bed to get dressed. The exact timing of when the line was pulled is still a complete mystery to me. As best I can tell, it happened (a) during the bath, (b) when I was moving him to the bed and the line caught on the IV pole, or (c) when I was 'testing' the line to see if it had been pulled at all. Any way you slice it, I'm an idiot. I called the nurse in immediately, followed by the doctor. Both of them assured me that it's not a big deal to have some slippage in the line, but it's pretty obvious that no slippage is the preferred route. Things were touch and go for a while there, as I came close to passing out immediately after it happened. I had to lay on the bed for about 10 minutes while the doctor and nurse checked things out. Needless to say, I had the nurse tape, wrap, glue, and weld the lines to him to make sure this didn't happen again. I must say that the end result was quite impressive, unlike the previous wrap job. I'll let you read between the lines (no pun intended) there. Finger pointing aside, Ryan handled the whole thing like a champ (big surprise) and things appear to be OK. I'm truly hoping that this doesn't come back to bite us in the future.

Ryan and I walked quite a bit over the weekend. He can't go outside the unit, but we still manage to get our laps in through the halls. All of the nurses comment on how cute Ryan is, and everyone seems to be impressed with his new shoes. Someone did a great job of picking those out. Ryan loves the attention. He actually walks up to each nurse station and stands there until they pay attention to him (this can last several minutes if they are deep in conversation). Once attention is gained, Ryan turns around and bolts the other direction. It's pretty cute.

Word to your mother

Ryan asked me to give a shout out to Mommy on Mother's Day.