Thursday, December 31, 2009

Oh, And A Happy New Year To You All

You said it, sister.

First off, you all need to know that Jane is stable and no one is currently freaking out. Okay? Now, let me take you back to a time of innocence, all the way back to 9:29 last night. I was about to take a hot shower and go to bed because my lousy day had finally ended... or so I thought. Dun dun dunnnnn.

At 9:30, the nurse practitioner called and told us that Jane had had an acute episode. (For the record, this is not my preferred conversational opener.) The order of events is a little hard to divine. Either Jane bronchospasmed (aka "clamping down", remember?) and then prolapsed her rectum, or prolapsed her rectum and then bronchospasmed. (We got the first version on the phone, the second version the next day at the hospital.)

"I'm sorry, what?"

Yes, it's true. Our little bundle of enough-of-this blew out her rectum not once, not twice, but THREE TIMES last night. (It hasn't happened since and a surgical resident came up to make sure she didn't need to be sticked back together. She didn't.)

I mean, honestly. HON EST LY.

So we got all fired up, convinced Jane was getting worse, fueled in no small part by the anxiety we were hearing on the other end of the line, and called Dr. Boston. He said he'd be happy to see Jane, but that the team had to make a formal request, yadda yadda.

I went in today ready to request that they make the request and somehow, by mysterious means, found myself deflated. I walked in just as rounds was starting, and the effusive Dr. R got all Head Of The Team on me and was, like, "She had a cold, and then she bronchospasmed because of the pain of the prolapse caused by ongoing diarrhea. Her underlying condition remains the same." Oh. Should we get a consult from Boston anyway? "No. Let's wait until after the weekend. It's a holiday and the weather's bad anyway." Oh.

Is your head spinning yet? Mine still is, but I blame my head cold/possible sinus infection.

They did take an xray, and her chest and belly look fine. And they did another CRP, and it's down to 4 from 23, so whatever was going on there is improving. And she looked a lot better today. Dr. R thought yesterday's irritability was the precursor to the "episode" (oh, these damn euphemisms. BLOW OUT, people), and today she was calmer. That might have had just a teensy but to do with the ativan and morphine they'd given her. But that's just my uneducated guess.

But I did get a two-plus hour snuggle in, and Jane napped for most of that. They want to get her back on the plan, but I did request that they let her recover before they jump on that. Oh, oh! And! Jane's on Viagra. For real. The actual drug name is sildenafil, and it was originally developed as a medication for hypertension (it releases nitric oxide, which helps decrease the work load on the right ventricle of the heart). They're introducing the sildenafil and weaning the INO (inhaled nitric oxide), and if the swap works, she'll be able to get her nitric without the gas. Putting her a step closer to home.

Okay. Let me leave you with a saying that one of my lovely friends told me today. It's a Rosh Hashanah sentiment, and could not be more perfect:

May the curses of the previous year end, and the blessings of the new year begin.

Heck, yeah! Happy New Year, everyone.

Wednesday, December 30, 2009


And I was so hopeful about today.

It was a good start, all the way up until 7:45 am. That's when Sarah's teacher called to say there was no school today. Because there was no water. In the WHOLE TOWN. And Tom had work stuff he couldn't get out of, so...

So I packed a lunch for us and loaded the Giant Bag of Everything with everything and off we went.

We missed rounds. They were early today -- when? when does that ever happen? -- and apparently nothing came out of it, but still.

I tried to get Jane to breastfeed when she was awake and looking happy and, no. She couldn't get any kind of latch and started to tire out, and her Os went from the 50s to the 80s.

Sarah kept pretending to mess with the tubes, which was freaking me out, even though she wasn't doing anything. I was sure everyone was staring at me and thinking, "What kind of person brings in a germy kid in the first place, and then lets them run wild?"

I read The Nutcracker to the girls (three times in a row), and Sarah kept bringing me board books to read, but Jane wasn't having it. I finally put her back in her bed and she immediately started hisatting. As if to say "FINALLY. BED. YES."

Sarah and I ate, and she was persistently being three. No outright tantrums, just dragging feet and deliberately chewing with her mouth open and dancing on the couch (chanting "Shake your little bum" which soon morphed into "Shake your little gas" when she had some -- nice), and not keeping her mask on and touching germy stuff everywhere and just... being three.

I gave up. I did. I threw in the towel. I just couldn't handle it. Jane was unhappy, Sarah was freaking me out, and I finally left.

What am I going to do when Jane's home? That's all I could think about on the drive back. I'm not going to be able to just walk away from this stuff when she's here. I don't know if I'm going to be able to manage all this when it's real.

I don't think Jane felt any better about it than I did.

"Can you go away? Can you just go away? Can you go away?" (a la Meg Ryan in Kate and Leopold)

Tuesday, December 29, 2009


Something they did yesterday worked. Could be the steroids, could be the increased pressure support, could be... um... whatever else they did. Our girl responded to it, maybe all of it, and she seems to be feeling a bit better. Her Os came down -- by this afternoon she was back in the 40s when she was sound asleep -- and she spent a little time awake after the trach change.

(Thanks to Stealth Photographer Angela!)

I'm taking advantage of a lull in the winter weather to head down tomorrow, stock up on my pumping supplies, and get in some snuggles while I can. We have a BLIZZARD coming, peeps. (Probably.) And to think we were soooo happy this summer about the winter driving we weren't having to do. AHAHAHAHA.

Boy, is that a load of the not funny variety of irony.

Monday, December 28, 2009


Well, I didn't make it down to the hospital today, but not for a lack of trying. I made it two exits down the highway before I gave it up. Snow, don'tcha know. It actually wasn't so bad that I couldn't have eventually made it down, but getting back would have been hairy.

It was just as well. Jane had a pretty crappy day. Nothing dramatic, and the doctors still aren't overly concerned, but she's definitely feeling under the weather. The suspicion for the moment is that she's fighting a virus -- possibly a rhinovirus. And guess who has a cold? And has had it for almost a week? Listen, I've been washing and Purrelling my hands obsessively and wearing a mask every day, even before I was feeling cold-y because Sarah was sniffly, but still. Tom keeps sliding suspicious glances my way (kidding [mostly]).

So, Jane's been sleeping all day, like you do when you feel grody. She'll peek her eye open for a minute and then do the baby equivalent of ducking her head back under the sweaty covers.

Some technical details. Her oxygen was in the 70s and 80s all day -- obviously a big jump from the 40s and low 50s where she's been for weeks. Her CRP went up again (that would be the protein level, and I did ask Awesome Nurse Angela what it stood for: c-reactive protein, the level of which rises in response to inflammation), from 20-ish to 23.something. Her normal levels in the past have been under 5, except right after the trach surgery. But her blood gases have been good these last few days, better than they'd been the last two weeks or so. Weird.

SO. So, she obviously needs a little something to help her through this. Oxygen is part of it, and today's day attending authorized a 5-day steroid burst, and today's night attending bumped up two of the pressure settings on the vent and wrote up a new plan for dealing with this new development. Which is always a good thing. And she has primary nurses on tonight and tomorrow, so for the next 24 hours at least she'll have people on who know her well.

I have to give a shout out to Respiratory Therapist Fitzy (call name Top Gun), who earned the Awesome title today by fighting hard at Angela's side to get the doctors to take Jane's elevated oxygen needs seriously enough to make some changes. He's on again tomorrow, which makes me feel better. Continuity of care, people!

Damn it all. And I was hoping to help out with the trach change tomorrow, but no way, not if I'm going to be shoving germs down into her lungs.

They did tell us there were going to be bumps in the road. Figures they'd be right about that part.

Sunday, December 27, 2009

Family Album

What do you say, invisible readers? Medical stuff or pictures?

Yeah, I thought so.

Our girl had a LOT of visitors today. Her zillion aunts and uncles have been itching to see her for months, and four of them got the golden ticket this afternoon.

First up, my sister. Jenny was the lottery Grand Winner, getting in a good snuggle with Janey before handing her off to me. (I was pretty proud of myself for giving her a whole half hour; I hadn't seen Jane in two days. Admire my restraint!)

Next, Jenny's husband, Kevin. (Technology has its limits; Kevin's waving to you all here.)

And finally, Tom's brother and sister-in-law, David and Carolyn. Tom didn't get a picture of David (sorry, David), but I went in with Carolyn later and here she is, immortalized on the intertubes.

I do believe Carolyn would have happily climbed into the crib to smoosh those cheeks, but showed her own admirable restraint.

Jane modeling a hat knitted by our friend Scott's lovely mother, Jean.

Awesome Nurse Kristy was on today and spotted some hair clips Awesome Nurse Liza (one of Jane's two regular night nurses) gave her Christmas.

And now, bonus shots from guest photographer Carolyn, who showed very little restraint in using her camera.

Nicely done.

In medico-world, Jane's had a weird few days. Nothing overly concerning, but they've backed off on the weans and time off the rate over the last three days. And the team was a little worried that Jane might be developing (or fighting off) an infection, so they did some bloodwork and cultured various bodily liquids. Her white blood cell count was slightly elevated as was whatever protein it is they check (I honestly can't remember what it's called; yes, I'm bad, I know). So she's got an IV in her arm (buried under about 10 yards of tape -- kid sweats like you would not believe) and is on antibiotics for 48 hours. No biggie. Just another thing.

Soup's on, gotta run. Thanks, fam, for making the pilgrimage to Jane's bedside. It meant the world to me, and I think Jane was damn glad to meetcha. (Anyone get the reference? ERic Stratton ring a bell? No? Google it.)

Saturday, December 26, 2009

Shop's Closed, Come Back Tomorrow

Taking the night off to hang with the fam. Jane had a perfectly good day with Awesome Nurse Donna, got herself a little time off from any more weans or trials or whatnot. Jane's getting a slew of visitors tomorrow, so there'll be plenty of photo ops to share with you all tomorrow night.

Hoping you all had a lovely Christmas (or couple of days) with your loved ones.

Friday, December 25, 2009

Have Yourselves a Merry Little Christmas

Santa came! Santa came! Stockings, presents, ornaments everywhere.

Sarah graciously offered to help Jane out with the unwrapping.

Jane, as always, remained skeptical of the proceedings.

After the presents had been oohed and aahed over, we took our Christmas dinner trays to the family room.

It tasted about exactly as good as it looked.

Jane got in some snuggles with Awesome Nurse Angela (whose awesome family surprised her at the hospital by bringing in Christmas dinner -- isn't that lovely?), and we headed back north.

I could leave it at that, but we are ALL about the honesty here. It... wasn't a great day. I went to the hospital while Tom and Sarah went swimming, and when I arrived Jane was not acting herself, and Angela was concerned. Okay, freaking out. Our girl was clammy and her temperature was a little low, and she was pretty out of it. She wasn't attentive or active. It was not cool. So Lon, the awesome respiratory therapist, came over and tried a couple things and decided to administer her Duoneb (a bronchodilator) treatment a little early. He discovered she hadn't received her six o'clock treatment -- it was in the machine, but it hadn't gone through. She'd been exhausting herself trying to breathe. So Lon gave her her treatment and almost immediately she started acting like herself again.

Rounds came shortly after and the team wanted to order a CBC and full septic workup and even a lumbar puncture (!), but Angela and I got them to stand down and wait a couple of hours to see if she had really gotten her feet back under her. For the most part, she had. She wasn't able to deal with being off the ventilator rate, so the trial was stopped after thirty minutes instead of three hours, but otherwise she was doing better.

But the whole day was colored by the mood of the morning. Poor Jane never had a moment to herself. ENT came up to check on her trach site just after she had fallen asleep. There was some concern about the wound and the skin on her neck, but the ENT resident thought it all looked fine. Jane had just dropped off again when the team stopped by to see how she was doing, and of course she woke.

Finally, she gave up and threw a nutty. Can you blame her? Poor kid spent the morning trying to breathe, and then never got a chance to get comfortable the rest of the day. I'd have thrown a tantrum myself. The team's still not convinced that it was just the Duoneb treatment, but at this point there's no evidence that it was anything else.

Happily, we made arrangements with Santa to come to our house tonight, so we get a do-over. Damn, do we need one.

Thursday, December 24, 2009

Oh, Boy...

A dialogue at the hospital today:

"Hi, Jane! What's that you say? You got me something?"

"Yay! What is it?"

"Hm. What is it?"

"Yay! My very own doctor kit!" (Actual quote.)

"Oh my god. She's totally going to use that thing on me. I shoulda rethought that one."

Hoping visions of sugar plums are dancing in your heads tonight.

Wednesday, December 23, 2009

Making A List

Someone's getting ready for Christmas!

Guest photographer: Awesome Nurse Kristy.

Gotta dash. Got my own list to knock out. Presents wrapped? Check! Stockings stuffed? Check! Baking baked? Check! (Really!) Laundry folded? HAHAHAHAHA. Not in a week, invisible readers. Clean but wrinkled (or "crinkled", as Sarah puts it) is the mode chez nous. Off to disinter the luggage from the depth of the closet.

Happy Christmas Eve eve, friends.

Tuesday, December 22, 2009

Five Months, Yo!

Can you believe it? Jane is five months old today. Five MONTHS.

To celebrate, she got to do something new and exciting: mat time.

There she is, playing with Awesome Developmental Therapist Thea. I mostly watched and helped with positioning because I wrenched my back this morning (just getting out of the car and lifting the Giant Bag of Important Crap I bring to the hospital every day, it was pathetic).

She really seemed to like it, but novelty has a certain appeal for our girl.

Tom's high school girlfriend came to visit (hi, Suzy!), and Jane was perfect: cute and alert half the time, and cute and asleep the other half. She was totally like the ICN poster baby.

It was just a really nice day. She's doing well on the plan, they made a few minor adjustments (ADJUSTMENTS, not changes -- one of the nurse practitioners said something about all the "changes" and Dr. L about jumped down her throat: "The plan has NOT CHANGED. We've just made some ADJUSTMENTS." Got that, people?), but overall she's handling everything pretty nicely.

This, of course, karmically offsets the fact that Sarah has PINK EYE. AGAIN. I didn't even bother calling the doctor, just went straight to the pharmacy and asked for the drops. No way is she infecting the entire family on both sides. That'd be a hell of a way to say Merry Christmas and thanks for all the support.

Also, her school is closed for Christmas break a day earlier than the schedule said, so it looks like we will be getting some baking done after all. And Jane's stocking may even be finished before the 25th. Silver linings, people, we're all about 'em here.

Monday, December 21, 2009

Photoganza Continues

Day whatever of the plan, and all's well. (Did it really start Friday? Saturday? I'm not sure what they consider day one.) Jane's down to 10 from an original setting of 20 on the nitric, up to 2.5 hours breathing without the rate twice a day

Awesome Nurse Kristy was on today. She has a little bit of a thing about Jane's wardrobe. As soon as she found this dress she had to put it on her and snap some pics. Can you see it? It's so cute -- brown and white stripes, with little ears on the hood, courtesy of Jane's Aunt Sue.

We tried another breastfeeding session, but it was far from our most successful attempt. Jane threw a total nutty just as I was picking her up and it threw us off our stride just a smidge. She exhausted herself and passed out for a bit, but then we managed fifteen minutes or so of respectable work.

And then, fun with faces!

Kristy got her all tucked in and Jane snuggled herself to sleep. I was just getting ready to leave when...

rattle rattle rattle

Jane was playing with Birdie! On purpose! Repeatedly! I need to find an iPhone video app. She was awfully cute, and still pictures do not come close to doing it justice.

The tree is half-decorated, the garlands half-wound -- I got work to do, peeps. Later!

Sunday, December 20, 2009

Picture Pages

Here's what Tom did today:


(That would be Tom checking the monitor. It's what he spends most of his time doing at the hospital. But note the strategically placed washcloth -- he catches on quick!)

Here's what I did today:

(The tree's one good side. That's what you get when you shop for a tree when it's 5 degrees. At least it has a good side.)

A pretty fair division of labor, I'd say. Best part of my day, besides decorating the kid tree with Sarah? I FINISHED MY CHRISTMAS SHOPPING! (I think. There's always something gets missed until the last minute. Thank god for last minutes -- it's the only time I operate at anything like peak efficiency.) Now all that's left is to assemble everything and wrap everything and get everything to the intended recipients. (I figure I'll be done around mid-March. Hope no one notices.)

Saturday, December 19, 2009


Tom spent the day at the hospital with Jane and Awesome Nurse Meg. First full day of The Plan!

Nothing to report, really. I'll let you just sit back and enjoy the photos.

Okay, fine, you busted me. Lazy post because I'm really watching Harry Potter and the Half-Blood Prince while knitting Jane's stocking. I busted my behind today getting the tree and presents and wrapping paper and candy and all that, so now I'm literally putting my feet up and crafting in front of the teevee with a beer. No doubt I'll be all too wordy again soon enough...

Friday, December 18, 2009


After nearly five months of driving 140 or so miles a day, the coppers finally got me. It was inevitable, I suppose. But the worst part about it? NO PAPERS IN THE CAR. I'm sure every last one of you reading this is far more responsible than I am, but I am asking you all to go out right now and make sure your registration and proof of insurance are IN YOUR CAR. I've never gotten a speeding ticket before (I promise, Mom!), so he let me off with a written warning, and I have to mail proof of insurance and registration to the staties' barracks. I have never felt so stupid in my life.

Having got that little bit of bad karma out of the way, I spent the day with Jane and got puked on. Twice.

Having got that little bit of bad karma out of the way, Tom, Sarah and I went to his work Christmas party tonight and had a thoroughly enjoyable time with the excellent people he gets to spend his days with. (VCFA in the house!)

Back at the hospital, I changed the trach ties myself again today (with help from Awesome Nurse Donna and Awesome Tech Deb), and it went pretty well. How about a little tutorial?

This is a pretty good shot of what I have to clean under and replace. The blue collar with the white arrow (which is a velcro tab) is the actual trach tie (here's another image -- Jane's trach tube is different, but that's the exact tie). It's in two pieces, so what you do is undo one side, clean and dry the neck and wound on that side and put the new tie in place, then do the same thing to the other side. Then you sit her up and attach the two pieces with another strip of velcro in the back. It isn't difficult at all, except that Jane squirms and silently wails and fights most of the time. You just have to ignore all that and trust whoever's helping to keep a firm grip on the baby. And the trach, of course. Musn't forget to hold the trach. And THEN I tuck new foam stuff (it's called mepilex; it's the beige patch under Jane's chin) under the collar so that it's around the tube and absorbs moisture and protects the skin from being irritated by the ties. That's the hardest part, by far. By far. That chin and neck is so thick it's hard to see anything.

But we're getting used to it. I've been telling Jane "chin up", in the hope that when she's older she can tip her head back herself and I can do the ties on my own.

That's what I have to look forward to. We've totally fallen down the rabbit hole.

Thursday, December 17, 2009

Mama Jiu Jitsu

It was a busy day, invisible readers. I learned some infant massage, tutored the neonatology fellow in what works best for Jane, vent-wise, so she could finish the new care plan, and took multitasking to a brand new level. At one point, I was pumping while Jane slept in my lap as I checked email. Fear me and my mad skillz!

I had Jane try breastfeeding at noon without pumping first -- it had only been an hour and a half, so I thought it wasn't too radical an experiment. FAIL. Poor thing took two giant swallows and backed off with a look on her face of utter bewilderment (and possibly horror). She obviously had no idea there was that much milk in the entire world, and there it was, pouring into her without letup. She kept a close eye on me until she fell asleep, let me tell you. I was actually relieved that she was willing to try again a couple hours later. Until then, I was pretty sure I had undone an entire week's worth of progress.

Once we had finished up, it was bath time, which was all cute and slippery and fun. And then... oh, peeps, and then I changed Jane's trach ties. Me! By myself! Well, Awesome Nurse Sue held the trach in place, and Awesome Tech Deb held Jane. (I am never changing trach ties without Deb ever again. She has those amazing mom hands -- do you know what I mean? Just firm and steady and calming and full of baby-wisdom. Jane wasn't happy, but she wasn't fighting the entire time, either. Unlike last time. I'm still a little traumatized by last time.) But I did the actual cleaning and placing of the collar and stuff. Sue said she was proud of me and that I could totally be a nurse. Isn't that sweet? She's such a good liar.

We were both worn out from our efforts. Jane passed out, and I went to the co-op to get her some fancy schmancy organic baby wash and massage oil and her very! own! chapstick! (Her lips get dried out.) Oh, and some Dial soap to keep her neck clean and healthy under the ties. But I got the aloe kind. Totally fancy!

Oh, and hey! Twenty weeks yesterday, and nine pounds, one and a half ounces today. Sing it!

Wednesday, December 16, 2009

Plans, By Golly


That was approximately the sound of me hitting a wall last night. Jesus. Turns out to have been more of a hedge than a wall, because I made it through. But, man. I was not a treat last night. Or this morning. The whole idea that I have to become a physical therapist (and eventually an occupational therapist, and eventually-er a speech therapist) on top of becoming a respiratory therapist, and an ICN nurse on top of the stuff I already do... well, it sorta felt like a lot to tackle. (That there would be an example of "understatement". Because what it actually felt like was a sledgehammer of responsibility pounding me into the ground.)

Amazingly, it was being back at the hospital that made me feel easier. Is that wrong? I don't care. It helped to see Jane, of course, and it helped to see our awesome nurses, who truly have become part of our family. Tom isn't really kidding when he talks about hiring them away from the hospital and bringing them home with us. And it helped that we had such a good meeting this afternoon.

Ah, the big meeting! Let me try to count heads: Dr. L the attending, the effusive Dr. R who will be the next attending, the clinical resource coordinator, the respiratory therapist from our home medical supply company, our social worker, the transitional long-term care coordinator, the developmental therapist, and three of Jane's primary nurses (one of whom, the Awesome Donna, drove in on her day off to attend! Do you see what I mean about these people? Who does that?). I am almost certainly forgetting someone. Sorry, someone!

Anyway. So Tom took the reins, the way he does, and expressed our gratitude for the team and all they've done for us, and then recapped where things are and our goals for Jane's care: reducing the lobe, avoiding surgery if possible, and getting Jane home. (Seriously. And he does this every time we have one of these meetings. It impresses the hell out of everyone, but it also sort of cracks me up.) We all spent the next hour hashing out what needs to happen, how it needs to happen, what we've been seeing in Jane lately, etc etc etc.

And it went really really well. I mean, really well. Dr. L is pretty old school, and people, we need a little old school. He agreed with everything Tom and I had to say, which was gratifying, but even better than that, far more important than that, was that he said that the plan that he and Dr. R are going to construct (with input from Dr. Boston) is going to be strict. Not in the rigidity of its implementation, which isn't always appropriate (you all know just as well as we do by now how easily things can change, and plans go right out the window), but in who will be responsible for implementing it. That's right! No more willy-nilly issuing of orders by random fellows and residents and therapists. The attending will be in charge, by god, and everyone else WILL fall in line.

I loved that.

They are making sure that everyone who has any involvement in Jane's care is aware of and adhering to the new plan. And, possibly best of all, they are taking the role of our primary nurses very seriously and said, in so many words, that Tom and I can say no to any changes unless or until a primary is around to sign off on it. Praise Jesus! Seriously. I could get religion over a thing like that. Awesome Nurse Angela earned her title by speaking right up and pointing out that there is NO reason for random people who don't know Jane well to be making changes to her care.

It was all just exactly what we needed. We got to air out some minor grievances without presenting them as such, we got some clarity on the approach to Jane's care, and Tom scored some major points with Dr. L. Get this, the doctor actually pulled Tom aside after the meeting and said, "I just want to shake your hand. That took balls to do what you just did." Honest to god! And he also said stuff like, "She's going to get through this. We've got some work to do here, but I think she's going to be okay."

And Dr. R was absolutely adorable about Jane's forays into breastfeeding. Apparently she didn't know about it, and when I mentioned it with regard to the whole rate thing, she about jumped out of her chair. "You mean to tell me that little girl is breastfeeding?" She was beaming. It was lovely.

It was exactly what we needed.

Uh, there is no actual plan yet. But he said they'd have one ironed out within 36 hours AND have everyone on board with it.

And to that, I say BRING IT ON.