Kintropy In Action

While we were doing a run to pick up medication for Hannah, we drove by a Heineken semi truck. Gabriel’s response was "What’s that?"

"It’s a Heineken truck"

"Do they have robots in there?"

I smiled. He had caught that cool new commercial that Heineken has produced with a beautiful 1920’s women inspired robot. It is an amazing piece of work. The CGI melts into the images and keeps making unexpected things happen. Gabriel has been really open to commercials. "No, Gabriel there are no robots in there. The truck is full of bottles of beer."

"Can I try some? If I drink it, can I make robots?"

"No, that was a commercial you caught. The point of commercials is to get people to buy things. They are not always a good idea to buy them or try them."

"I want to try beer so I can make robots."

At this point I’m trying not to fall into laughter. My mind is rushing to next week when he begins kindergarten and what he will say to other children. "Gabriel, you can’t try Heineken or any beer till you’re an adult. Beer is something only adults can drink and they shouldn’t drink it all the time."

"When I’m a Daddy can I try beer?"

"I doubt you will like it Gabriel." I must start brainwashing now.

"What is beer?"

"Rotten wheat, barley, and hops. Sounds kind of gross huh."

"Do robots drink beer?"

"Sure."

"So beer is for robots."

I decided to go with it "Yeah."

  "I want to make a beer kids can drink. So kids can make robots, too."

"There is a beer that kids can drink; it is called root beer. You don’t need to drink beer to make robots."

"Oh."

"Do you want to work on a robot with me?"

"Yes"

Today, Gabriel and I started working on the Radio Shack snap circuit kit together today. I explained that to build a robot one needs to understand electricity first. He loved it. I’m excited because it is a pet project I want to work on, too. We did five experiments, and he asked me to do more the rest of day.

--Mom

Posted by parents at 10:20 PM | Permalink | Comments (0) | TrackBacks (0)

Yesterday, in the middle of a session with Hannah’s physical therapist Gabriel came yelling from the bathroom. "Excuse me Mom, I need help!" All manner of bathroom excrement scenarios past through my head. I arrived to find the floor clean.

"What do you need help with?"

"I sat my tooth on the counter but I can’t find it." He lost his first tooth. He had been playing with it all morning but I remember that stage lasting for days when I was a child. I’m pretty sure he took it out himself which impressed me.

"Oh yeah," I said, "let me see." He presented his lower jaw and there was a perfect gap. I looked around the sink, the floor and pulled out the stopper for the drain. I couldn’t find it. "Don’t worry I said I will call the tooth-fairy. She’ll find it in here for you and leave you present under your pillow. She just requires that you lost it."

"Mommy, why does the tooth-fairy come when you’re asleep."

"Because, she is shy. I think she is also afraid people will try to catch her."

"I won’t try and catch her." He said this solemnly.

"I know sweetie but, she is really shy."

Later that night Robert, Gabriel and I speculated on what the fairy does with the teeth it collects. I mentioned maybe she plants them and grows plant to produce the nectar fairies drink. Robert said "She feeds it to a monster to keep it from getting hungry and eating fairies. Gabriel blended it together and said, "She plants the teeth to grow flowers to feed.

--Mom

Posted by parents at 09:15 PM | Permalink | Comments (1) | TrackBacks (0)

It's 4:30 a.m., and Hannah, still semi-asleep, is bawling her eyes out.  Time for some Dr. Daddy deduction:  why is Hannah upset?

The essentials: 

Her breathing seems fine.  Although her sats drop while she is on a crying-jag, they pick right back up to high 90s when she relaxes for a moment.   Need to figure out what is making her uncomfortable.

Check the likely suspects: 

Enemy number one is a wet diaper.  Quick change McGraw goes into action, and the diaper is resolved.  Hannah flips back to her side, trying to go back to sleep (our shared goal, at the moment).  I wash up, but return to find her still bawling.

Hannah has been on the humidifier all night which often a wet bed and child make.  Yep, her clothes and bed are drenched.  I drain the humidifier hose of water, change her shirt, and assemble a makeshift cover-the-wet-part-of-the-bed-with-a-clean-cloth fix.

For good measure, after listening to her breathe again and hearing some moisture rattle around, I suction her trach.  I pick her up from her bed and cuddle for a little while, singing softly.  Her crying pauses while we hug, but then the cycle begins again.  I lay her back in the bed. Hannah, now increasingly awake, is still crying.

Go for the medications:

Particularly post-surgery, I am inclined to think the stitches, gouges, and skin reactions to all-things-hospital might be a tad uncomfortable.  I deliver some Tylenol and a cold, wet pacifier.

And Hannah continues to cry.  She is also now firmly awake.

Self resolution:

The gas bubble somewhere inside her dissolves.  Hannah relaxes, looking up at me with rather wide-open, expectant eyes.  I remain firm that she stay in bed, but we begin singing through the Daddy Songbook.

Conclusion?:

By 5:00 a.m., a combination of Tylenol, gas relief, and wakefullness have returned Hannah to a content state.  I have given up on singing for a bit, allowing Laurie Berkner on tv to fill in during my interlude.  Meanwhile, Hannah is tossing pacifiers to the floor and offering hugs as bribes for new songs.  Our morning routine is firmly re-established, it seems. 

-- Dad 

Posted by Dad at 05:45 AM | Permalink | Comments (2) | TrackBacks (0)

"Hello?"

"Hi, Mr. xxx?"

"Yes?"

"This is J. yyy, Gabriel's kindergarten teacher."

It was Monday night, post-dinner.  Gabriel's first day of kindergarten was a week-and-a-half away.  I was caught a little off guard.  Could this be a pre-emptive move to discuss Gabriel's perpetual external dialogue?  Did we miss an entrance exam for public kindergarten:  finger-painting trials or crayon color boot camp, maybe?

"Uh, should I call you J. or Mrs. yyy?"  I stalled for processing time, but managed to come off sounding like a creepy parent's version of teacher's pet.

Pause.  "J. would be fine."  Another pause.  "I wanted to set up a time to meet Gabriel on Wednesday of next week, before class starts Friday.  If you could bring his school supplies, his $10 party fee, and some lunch money if he's going to use school lunches..."

"Wednesday, you said?"  I spun around to check our home nursing calendar affixed to the refrigerator.

"Yes," J. affirmed.  "I would like to meet with Gabriel before school starts to collect everything, do an assessment..."

I knew it.  There was going to be a test!  "Our daughter requires home nursing, so let me check coverage."

"Oh, okay."

"Yes, Wednesday is fine.  We have day nursing after 11am."

"How about 11:30?"

After confirming with Mom that that time would work for her, I relayed the confirmation to J..  Then I had her walk me back through what we were supposed to bring.

"... school supplies ..."

Check - not done.  Gabriel's school supplies list showed up in the mail while Hannah was in the hosptial.  Images of wrestling with parent hordes over composition book dump bins at Fred Meyer bounced through my head.

"... $10 party fee ..."

Was that in cash or check?  How could I contribute to a kiddie kegger?  Were milk boxes supplied or was this strictly BYOB?

"... lunch money..."

"How much should we bring?" I asked.

"Well, depends on whether or not he will eat the school's warm lunches," J. offered.

Hmmm... warm school lunches.  How far had the hybrid meat-soybean burger come since my day?  Would the mashed potatoes still cling to and scorch the roof of one's mouth?

"You know, Gabriel will probably want to try it, but he's a picky eater."

"Oh, okay.  Then maybe just $5 or $10 to get started," J. said.

Soon after, I hung up the phone.  I let Gabriel know his new teacher had called, trying to pump him up further about going to a new school and making new friends.  He's already pretty excited:  I think he seems himself moving on up in the world (hence, the picture).

Me?  I'm sure J. will remember me from our call, for better or worse.  I wonder when that first teacher-parent conference will be?  Maybe Janette, J, and I could meet in the student cafeteria and enjoy a nice, warm lunch together.  Burgers and mashed potatoes, maybe?

-- Dad 

Posted by Dad at 02:54 AM | Permalink | Comments (0) | TrackBacks (0)

Monday, Gabriel and I went grocery shopping. I was restocking the house for the week. Gabriel is pretty good in the store but has a problem of going into his own little world and not watching where he is going. So I spend most of the time repeatablly saying . "Gabriel watch out. Look where you going." The amount of near misses with other shoppers carts makes my head spin.

So I was in the middle of telling Gabriel to look where he was going for the tenth time as I ran into an elderly man with my shopping cart.

--Mom

Posted by parents at 11:42 PM | Permalink | Comments (1) | TrackBacks (0)

Ok, so the hospitalization involved an exploratory surgery of Hannah’s abdomen. The doctors found that her left ovary was the size of a walnut and interconnected with a tumorous form. They couldn’t figure out where the ovary or the tumor began or ended. So they removed the whole left ovary. They sent the mass to pathology to find out what it was.

Yesterday, the office called with the results of the pathology report it was called a Mucinous Cystadenoma. The surgical nurse practicianer from the surgeon’s office said, "I’ve never heard of it. Leave it to Hannah. It’s benign which is the most important thing." I looked it up online with some interesting results.

So I’m still digesting them. They usually occur in reproductive age women. Hannah is three and a half years old. This makes me think we need to talk to an endocrinologist and see what is going on with her hormone regulation. The scientific community is still unsure of the causes of Mucinous Cystadenoma. Mucinous Cystadenoma can get really large in size. I agree a few pictures on-line showed one the size of a melon and another the size of a baby.

I’m glad we pursued this and stopped it before it got any larger. It was affecting her back and her intestinal track. She is willing to stand more and her intestines are performing without her screaming in pain.

--Mom

Posted by parents at 11:28 PM | Permalink | Comments (0) | TrackBacks (0)

Hannah has had a great day. She sat up twice by herself. I watched her pull herself into crawling position several times. She was even willing to try standing. She smiled and giggled as she moved her body she seemed relieved to have the walnut size mass taken from her body. She laughed at Gabriel and let him snuggle longer then usual.

My eyes can’t help but linger a minute or two on the bruising about her limbs. The IV struggle that dominated a great part of her trip to the hospital brings up a pretty funny moment. Yes, funny! So here is the background.

Hannah’s IV in her left wrist (wince) clogs up. So it is pulled out and the IV team is called. One of their best comes. She knows Hannah and her tiny moving veins. She plays with her arms and then decides to get a special light that helps finds veins. She gets it. No luck: it doesn’t make anything clearer. I mention successful places in the past. She decides to go for it and tries twice. The veins flash a spot of blood or the vein fatten up elsewhere. So the floor nurse who is also great tries. Nope. Hannah has been poked four times now and is upset.

Her floor nurse, who has known Hannah since she was very little, calls the doctor. He wants another person to try. So Transport comes in and tries once. I ask, "Can we go for a PICC line?"

We only need it for liquid, but I know that if her stomach doesn’t click in soon, we are going to need the line for nourishment. At this point, Hannah is on her third day of not digesting anything. Exhausted from the IV attempts, Hannah goes to sleep. I go to get lunch and run into the doctor on the elevator up and ask him point blank. He agrees. I mention he’ll have a message from the third person that has already tried to stick Hannah.

There is something else you need to know about this particular resident doctor: he is not my favorite. He says things to me that I usually internally (and sometimes externally) say "Yeah, right!." He comes across very arrogant and says things like after this particular surgery "Yeah, she will most likely be going home tomorrow." I don’t respect him.

So here is the scene:

Hannah has moved to the Pediatric Intensive Care Unit. The PICU doctor is there. All the people from the IV unit and Transport are there. They have an Ultrasound and are trying to find a vein. Hannah is given something to calm her down and take her out of pain. I talk to her and stroke her head as she goes down. Everyone is looking and not happy with the options. The resident walks in. He stays to the side while the PICU doctor discusses the case with him. The resident watches the discussion as I stand next to the PICU doctor. The IV team has given up on the PICC. She is too dehydrated.

I mention that all we really need is an IV. They decide they need to get an IV in and, with Hannah in this state of relaxation, it might be easier. And an IVwill rehydrate her.

So as they are deciding who will try this time, the resident that Robert and I called Dr. Blond Guy nonchalantly walks up and points to a vein on Hannah’s left leg. "I like this one." Everyone’s body language changes. I’m not the only one with problems with this gentleman but, he is young yet, and we are all hoping he can learn. They assist him and help him set up.

As he is about to put the needle in, I say, "If you succeed in this, you’ll have everyone in this room’s respect."

He paused and said "OK, no pressure right?"

I believe I held my breath and the PICU doctor cheered as he got the line to flare and it worked.

I told him "We are calling you from now on if we need an IV!"

He responded "I’m never doing Hannah again right now I’m at a 100% and Hannah 0"

IV people talk about pokes in scoring terms.  (Weird facts from the Medical community)

Hannah’s IV lasted less then twenty four hours….. The PICC attempt the next day with the eventual Central Line was Hannah’s

--Mom

Posted by parents at 09:35 PM | Permalink | Comments (0) | TrackBacks (0)

I picked up Janette and Hannah from the hospital this afternoon, and, aside from some post-surgery pain, Hannah seems to be doing quite well at home. 

We'll write more about our hosptial experience over the next few days.  In the meantime, thanks for everyone's support and kind words.

-- Dad

Posted by Dad at 09:00 PM | Permalink | Comments (1) | TrackBacks (0)

For those following the latest Hannah hosptial saga, we have good news:  The Stomach Gurgles.  No, this is not a new soap opera about a wealthy restauranter and his family (though that might work); Hannah's stomach has awoken and is grumbling with hunger.

This is a good thing.  With abdominal surgery & the hold on food in favor of IV fluids, Hannah's stomach goes into hiberation.  This particular round, it went to sleep on Tuesday, got poked with food Thursday and Friday, mumbled "I don't want to get up", pulled the sheets back over its head, and went back to sleep.

Well, in Hannah-land, this creates problems.  She is a difficult stick when it comes to IVs.  Her veins are small and happy to play hide n' seek.  Any successful IV has a lifespan of 1 1/2 days with Hannah at most.  If she requires the IV longer, but gets dehydrated between IV placements, she graduates to a PICC line.  When that fails or cannot be achieved, she moves to a central line.

And that pretty much brings us up to last night:  the installation of a central line.  For the uninitiated, this is the ultimate IV with some pretty direct access to the blood flow:  a bigger, major vein.  The line must be implanted surgically, and it carries the additional risks that surgeries & tapping a major vein entail.

Hannah did well during this unplanned procedure (plus Dad got to pratice his ventilator circuit assembly/disassembly skills because he wasn't really in the mood to play the call-the-RT-and-wait game).  By last night, though, the central line placement site was looking puffy.  By morning, 1/2 of the needle ports had failed.

So, given the IV complications to date, I was particularly excited to hear Hannah's morning nurse  declare that Hannah's tummy was growling this morning.  Hannah had tolerated really slow, small feeds since 4am, and our plan was to increase volume and rate throughout the day, provided she continued to handle it well.

I checked in tonight, and Hannah is up to 70ml/hour.  Her stomach, it appears, has agreed to wake up & pitch in.  Hannah sat up to watch Jeopardy with Mom, and she appears to be maintaining the food well.  All in all, we hope to head home from the hosptial soon.

-- Dad 

Posted by Dad at 09:32 PM | Permalink | Comments (2) | TrackBacks (0)

My father in-law is a reborn health nut. It’s a good thing. I just like to tease him about his zealotry. After a life-threatening incident, he was shown that eating low fat didn’t mean loosing flavor. He no longer engages in sedentary occupations but exercises from three hours to more a day. So he is pretty fluent in information on body health because that is his complete focus these days. One day I was discussing my troubles with stomach fat with him. He had just spent several days with us visiting his house in California without a nurse last December. He had visited us before but hadn’t actually experienced our day to day lives.

So his response was that " Studies have found that the chemical Cortisol our bodies produce can inhibit the reduction of tummy fat. Cortisol is produced when the body experiences stress." His gaze went directly to my eyes "I’m pretty sure you swim in it."

I was raised to downplay any discomfort I experience. Outside with a sarcastic voice I said, "What stress?" Inside I was thinking "Yeah, your probably right"

So last night was not restful I had to keep the Cortisol ocean I swim in pumping. Hannah was in pain.

Understandable, since she had just finished abdominal surgery. Besides the surgical wounds she was getting pain from gas. Hannah doesn’t have an easy time burping so most gas needs to come out the other end. Large volumes are not always easy for her to pass. So it starts a chain reactions. She starts gagging like she is going to throw up. (Nisson prevents Throwing UP) Her mouth fills up with saliva like when someone is about to vomit and she has not figured out swallowing yet. So she starts to aspirate (inhale saliva into her lungs). The machines won’t start going off for minutes yet. I know what this sounds like.

So I jump out of the cot. Stop feeding if it is going. Find a syringe while turning her on her side to encourage the saliva to fall out of her mouth. I attach the syringe to the g-tube and pull, if there is excessive air in her stomach it pops open smooth and easily. (Normally there might be 30ml of extra air around 6 teaspoons) Last night their was around 90mls (27 tsp.) of extra air every 30 to 60 minutes. After the initial pull of the syringe I pull out suction catheters and start working on suctioning out her lungs. She is on the vent right now so that involves pausing the alarms so I don’t wake the whole floor. This happening every 30 to 60 minutes last night is the meaning behind the words Hard Night I text to Robert this morning.

I’m going to bed now.

--Mom

PS---Hannah before Surgery

Posted by parents at 08:23 PM | Permalink | Comments (1) | TrackBacks (0)

My cell phone beeped at 7am this morning.  "Hard Night" read the text.

I phoned Janette.  Hannah's surgery seemed to go well yesterday, but her recoveries can be another matter.  One resident thought we might get released today (I think Janette laughed at him).

Overall, I think Hannah will be fine, but the night was rough:  lots of pain meds, poor toleration of food, gagging, suctioning, etc..  Given all that, I'm betting Janette's sleep quota is pretty low.

So heading into the hospital this morning, earlier than planned.  Hannah may need the help, and I'm sure Mom needs the relief .  We'll keep you posted.

-- Dad 

Posted by Dad at 06:34 AM | Permalink | Comments (1) | TrackBacks (0)

We dropped Gabriel off at his old pre-school just before 6:30 a.m. and headed into the hosptial.  Gabriel was getting some time to catch up with old friends.  Hannah was going to go to surgery.  Janette and I were headed to a succession of waiting rooms.

Waiting Room #1:  Intake 7:10 a.m.

We arrived just before the 7:15 a.m. requested time, wheeling Hannah into the day patient waiting room.  We met a family there and caught up on all things beads, dogs, and the like.  I sung to Hannah.  Janette held Hannah.  We killed time, and Hannah remained suprisingly patient.

Eventually, we were called up & gave the hosptial all the same info they have on file from several weeks ago, July, and January.  Yep, still the same.  I wheeled Hannah around the ward while Janette did the paperwork dance.  Eventually, we made it to the day surgery room.

Waiting Room #2:  Day Surgery 7:45 a.m.

We met another family here and compared stories, kid count, and regions of origin.  I checked with Janette on Hannah's personal DVD player.  She had left it in the van.  As far as essential equipment goes, the DVD player rates just under the ventilator.  I ran back to grab it.  Hannah passed an hour in Laurie Berkner bliss.

Waiting Room #3:  Surgery Prep  8:40 a.m.

Both Janette and I accompanied Hannah to the surgical prep area.  Laurie was still entertaining (plus the verced was kicking in).  We traded notes with the anesthesiologist, reminded everyone about her PFO (heart condition), warned against the big three:  No Bleach, No Iodine, No Latex.  Hannah is allegric to them all.  The surgical doctor, someone we've worked with several times before, popped out to describe the exploratory abdomen surgery.  We shook hands, caught up a bit, and left Hannah in his care after kisses and goodbyes-for-now.

On our way out, a nurse offered us a pager:  a new service.  "When this starts buzzing, head back to the Family Waiting Area.  Dr. Xs schedule is very full today, and we'll need you back there quickly."

I chuckled.  We weren't amateurs, I thought.  But she was quite serious.  I accepted the pager with all due seriousness, and Janette and I headed to the next waiting room. 

Waiting Room #4:  Family Waiting Area 9:00 a.m. - 11:00 a.m.

Well, several families either did not have pagers or did not return on time, missing their doctors' updates.  Score one for the nurse.  I got it.

Janette and I hung out in the waiting room.  I made (the second) coffee run.  We traded for bathroom trips.

We met another mother here - a mother of newborn twins.  We chatted with her through an interpreter (though I still can understand some Spanish, I don't speak it well).  One of her daughters seems to be on a road familar to us, so we gave advice (Medically Fragile Children's Unit and other services) and perspective/hope.  I think she received both well.

A nurse updated us on status about halfway through our wait.  Hannah was doing well, sleeping comfortably.  Dr X had found the cyst, but was still searching for a cause.  

The update did surprise either of us, I don't think.  Hannah seems to prefer the elusive and exotic.

Around 11, Dr. X met us in the Family Waiting Area.  He shared his findings (and pictures, which he knows Janette loves).  The cyst was removed and then some (we'll edit a bit here for Hannah's privacy).  The cyst will be checked out, but is probably not malignant (he saw my look as he ranked malignant for this type of cyst as really rare - "I know what you're thinking, Dad, this is Hannah, but...."

Waiting Room #5:  Post Op Room 11:00 am - 12:30 pm

So far, so good, considering.  Hannah's been through a lot today.   Mom went in first to set up the home ventilator.  She had someone grab me about a half hour later, and I joined her and Hannah.  Hannah's pain was spiking and ebbing.  Appropriate meds were given.  I sung.  She relaxed some.

The nurses and RT tried to figure out when Hannah could be released to the floor.  Most of Dr X's instructions basically said "do what Hannah's parents say" (we really like this doctor - he acknowledges our expertise in all things Hannah.  Not wrecklessly - he and team will still assist us with decisions, but he certainly takes our input very seriously).

Finally, we got things figured out and Hannah headed up.

Floor:  12:30pm

Hannah makes it to her room which she shares with another child.  Janette chats up Hannah's roommates' family.  Hannah sleeps.  I turn on the news as Janette forages to the cafeteria.

***

Tonight, Hannah is doing okay.  The pain is a bit much, but we're moving from the really, really strong drugs to the just-strong drugs.  Trying to take her down a bit if she can manage it.  She's sleeping quite a bit, and I expect that to continue into tomorrow.

 
Meanwhile, Gabriel and I are home, and Janette is hanging out with Hannah.  Gabriel sounds like he has fallen asleep next door. Janette and I have shared our phoned goodbyes for the night.  And I am headed to bed.

-- Dad

Posted by Dad at 09:29 PM | Permalink

Sorry all for the several days between entries.  Tonight, we're hunkering down, preparing for a 3-5 (very estimated) hospital stay. This is the exploratory surgery to see if we can figure out what is going on in Hannah's abdomen.

Gabriel is trying to settle down and go to sleep in his room.  Hannah is starting to get sick prior to surgery tomorrow - just to make things more interesting, I think.  Janette has just headed off to bed to try to relax enough to get up early tomorrow morning.  Chaos reigns.

As for me, I have started a four-day [hospital] vacation from work.  Tonight, I'm still thinking about the 24 hour Starbucks.  No, won't help me relax, but I'm not sleeping much tonight anyway.  Tonight is probably our only night with both parents home for the next couple of days, so I may fly the coup for a few tonight & track down some coffee.  (Luckily, the hospital has a 24 hour espresso cafe - not a bad perk). 

We'll keep the blog updated as often as possible over the next few days.  Got a lot of stories to tell from the last week or so, so I'll fill in some gaps when I can.

Thanks all,

-- Dad 

Posted by Dad at 08:46 PM | Permalink | Comments (1) | TrackBacks (0)

Today was the sixth day before the surgery to explore Hannah’s mysterious abscesses. After a week of great health her nose has started to run with green slime. No fever, yet, but she is also requiring more suctioning. I’m holding my breath and trying to apply my quantum physic lesson from the movie What the Bleep do We Know that I just finally finished watching. Hannah kept rolling over to my laptop to nod enthusiastically in agreement and emphatically no in disagreement to different parts. I really hope she applies some of the ideas to her reality so this is a smooth hospital stay.

--Mom

Posted by parents at 10:17 PM | Permalink | Comments (2) | TrackBacks (0)

Our family went to the taste of Oregon festival this weekend. The whole family loaded onto the Max and we headed downtown. We met our day nurse downtown at Portland city center where to my surprise a show on electric vehicles was being held. I am very interested in electric cars so this was exciting for me. While were waiting for my brother in-law and nephew, the nurse set Hannah at the edge of a fountain there and let her play in the water. She was mesmerized.

Then we walked about 4-5 blocks to the waterfront where the Taste of Oregon was being held. My Dad was in town on business so he was going to meet us at the festival. We found a sandbox at waist height that would be great for people in wheel chairs and adults tending to young children. My nephew, Gabriel and yes, even, Hannah were immediately playing in it. This was a first for Hannah because I’m usually leery of the cleanliness of public sandboxes or they are overwhelmed with children flinging sand. It’s a bad idea for someone who breathes through a hole in her neck to be around flying sand. This was a great place to try it because there wasn't a lot of kids around and it was easy on the adults back to keep her from harms way.  Hannah wasn’t sure about the sand as her nurse buried her feet and ran her hands through it. Gabriel was focused on trying to build a tower like the one Gandalf was imprisoned on. (Yes I know he is young…..He finished the Lord of Rings movies this weekend) Their cousin was trying to dig with a shovel that other kids kept absconding with.

We met up with my Dad at a stage where a band was playing great music that the kids loved. We then proceeded to the wine tasting area. My brother in-law and I tried a few while my Dad and Robert talked. Gabriel played around a big tree and the nurse took Hannah to a table to start her tube feeding. It was in great view of the stage we were just standing at. My nephew started dancing with his father in that area amusing Hannah to no end.

We walked the rest of the grounds with one or two of us wondering to try food. Hannah the nurse and I wandered off only one time to suction her doing the whole outing. Oh there was one other new experience for Hannah. She is really insistent on using the potty and not her diaper anymore. I anticipated this and brought a bottle of vinegar and a portable child seat that fits on a regular size toilet seat. Nevertheless, it took two of us and the seat fell into the Honey bucket port-a-potty but we succeeded.

On the way home on the Max we sat next to a gentleman in a wheelchair who used his head to control it. We had a conversation with him about Harry Potter books and how people talk since Gabriel kept saying he talked weird. The gentleman had some type of muscular thing going on and had to pause in the middle of words and turn his head at regular intervals.

Robert said, "We all talk funny. Your sister uses a Passy Muir to talk. I talk funny. You talk funny. What is more important is that you listen to what people say."

I said "You should also realize that what a person has to say is important and worth listening too."

The gentleman nodded profusely in agreement and said "Yeah!"

--Mom

Posted by parents at 09:47 PM | Permalink | Comments (1) | TrackBacks (0)

This weekend was the Hillsboro yearly Air show. We live in the flight path of the airport. So this week the air has been quivering with the sounds and sights of the Blue Angels rushing through the air performing stunts that make my heart skip a beat. I found myself holding my breath and marveling at the ability of human ingenuity.

 --Mom

Posted by parents at 08:44 PM | Permalink | Comments (0) | TrackBacks (0)

This morning, I woke at 2:30 a.m.:  my turn for nursing duty.  Four hours of sleep.  My throat was scratchy:  not a good sign since I was out sick a half-day this week.  I popped a Sucrets and tapped Janette in Hannah's room.  She collected herself, mumbled some medication and bedtime updates, gave a quick hug, and crawled off to bed.

I downed two cups of tea thick with honey and settled in, watching the clock, listening for changes in either of the kids' rooms.  Hannah slept like a log, her compressor snoring loudly on her behalf.  Gabriel tossed and turned as usual.  I heard him pop up with a yelp in his bed before 6 am.  The remnants of a dream backlit his face.  I encouraged him to lay back down and rubbed his back.  The magic worked; he fell back to sleep.

The house was quiet.  I slid into my slippers and snuck to the front door.  I was hopeful.  Maybe it had arrived.

I opened the front door and peeked out.  6:00 a.m..  No, no sign of the morning Oregonian.  Grimly, I closed the door.

The Oregonian, our local paper, must be delivered by 5:30 a.m. weekdays; 6:30 a.m., weekends.  The Sunday edition, with the extended Opinion section, is my second favorite (Friday, with the weekend entertainment planner, my first).  I am, it could be said, a sucker for schedules.

But my paper was not there.

6:15 a.m..  No dice.  Nice sunrise (pictured), but no paper.  Kids?  Still asleep.

6:25 a.m..  Still none.  Would I have to call today?  That would be disappointing.

6:30 a.m..  Ah, the paper is here!  I dash out to the driveway, the front door open so I can listen for the kids.  I am PJ man in slippers, but I don't care.  Everyone sleeps in on Sunday.

Except for me.  To enjoy my paper in peace and quiet.  With a fresh cup of coffee in my hand.

I unwrap the paper from its plastic sheath and scan the front page.  Thick with ads, the newspaper nestles against my chest.  Just me, my coffee, and the paper.  One last quick check on Hannah....

Just me, my coffee, my grinning daughter, and the paper.

-- Dad

Posted by Dad at 08:42 PM | Permalink | Comments (0) | TrackBacks (0)

3am.  Both kids are deep asleep.  Hannah curls up to the warm humidifier tubing and a nearby Elmo doll, amber pulse-ox metrics (100 O2 / 90s HR) illuminating her bedroom.  Her humidifier drones on. In his room, Gabriel shifts, his arms tucked under his abdomen, his head falling short of his pillow.  Mirroring Hannah's pulse-ox, Gabriel XM Radio aqua symphony laps against dark corners.

Janette has retreated to our bedroom, having swapped shifts with me an hour ago.  Hopefully, she sleeps deeply for the next four hours, wrapped up in queen-sized blankets, recharging for a day with the kids.

For the remainder of the morning, I stand watch.  I pace between Hannah's room, looking and listening for changes, the office, and the kitchen.  I turn on the kitchen radio, catching up on the news.  I empty the dishwasher.  I start coffee:  the first of several pots today, to be sure.  I snack.

Outside, a newspaper is wrapped and prepared for driveway re-entry at my house.  Accepting the stillness of dark skies, the birds remain quiet, asleep themselves.  The unusually chill and dewy summer air hugs the ground.

My time is mine until the world awakes.

-- Dad 

Posted by Dad at 02:35 AM | Permalink | Comments (1) | TrackBacks (0)

Gabriel learned a new term today much to my chagrin Whoop A** as in opening a can of Whoop A**.

Ugh, we finished watching the second DVD of a Powerpuff Girls collection when Gabriel went to the bonus features on the Disc. It seems that Craig McCracken, their creator, originally had a different component then chemical X it was a can of Whoop A**. The Powerpuff Girls original name was The Whoop A** Girls. Wow!

After about 10 minutes of him repeating the shorts I said.

"Ok, Gabriel it’s time to watch something else and Whoop A** is not OK to say."

"Why not, Mommy?"

My brain is reeling "Well it’s not a nice thing to talk about."

"Why?"

Ok I decide the simpler the better. "Whoop means beat and A** means butt. So what you’re saying is Butt Beating. That is not a nice thing to talk about is it?"

"No."

"Let’s watch a Veggie Tales. We borrowed a new one." (LOL Those bonus features were less troublesome)

--Mom

Posted by parents at 09:35 PM | Permalink | Comments (0) | TrackBacks (0)

About a week and a half ago, we celebrated our fifth year as Oregonians.  Our celebration was relatively low key:  a warm smile, a quiet cheer of triumph.

Our appliances, on the other hand, turned it into Bastille Day.  Viva La Resistance!

Our new DirectTV DVR (now nicknamed Robespierre) crashed first, deciding that it really preferred to watch Spongebob and Nick At Nite than the evening news, sitcoms, or anything else.  It was stubborn.  It refused to budge from its selected channel no matter what we did.  So I reset it, losing all of our recorded shows to date.  OK - not the end of the world, but annoying nonetheless.

Our washing machine, as previously noted, joined the fray, dripping soapy water through the garage.  Blood on the pavement, as far as I was concerned.  What if it dripped into the walls?  It could shake the foundations of our little fortress!

Not to be outdone, the freezer and fridge conspired.  The freezer said, "I'll get colder and colder, but let you bask in the warm summer air without any freon.  Food will spoil.  Medicine will go bad.  We'll strike a blow for Robespierre!"  So the freezer grew colder as the refridgerator warmed up and broke.

Even the driveway, though not an appliance, sympathetically split the wood separating its concrete quadrants.  Viva La Resistance indeed!

Today, we called in the army:  the Sears repair person.  Quickly, he evaluated the fridge (mysteriously still under warranty, believe it or not) and found a defective part:  the defrost unit for the freezer.

Tonight, the rebellion has quieted.  Robespierre is back to recording what we tell him to.  The fridge is restocked with Janette's grocery run tonight, cooling its contents nicely.  The washing machine has churned through several loads today without a overloaded drip in sight.

Now we can relax, briefly, while the appliances lick their wounds, regroup, and plan the next assault.

-- Dad

Posted by Dad at 08:56 PM | Permalink | Comments (1) | TrackBacks (0)

My parents once arranged for our entire family to go to a Family Encounter weekend.  The overall goal, I think, was to teach us communication and conflict resolution tools:  or, as I saw it, Ways to Argue Successfully With The Appearance of Sensitivity.  A sampling:

• No Garbarge Dumping - during an argument, you can't bring up anything that happened over 24 hours ago (translation:  disadvantage to those with long memories; advantage to speakers that think well on their feet)
• Always talk about how things make you feel; don't pass judgements (translation:  talk-the-talk by coating your personal digs in syrupy, touchy-feely language)

One memory that did stick with me, however, was the Weekend's theme song:   Harry Chapin's "Cats In The Cradle."  If you haven't heard it, the song revolves around a father-son relationship.  The kid asks for dad's time; dad puts him off because of work, etc..  When the kid grows up, dad asks for the kid's time.  But the kid is now too busy with a life of his own.  Very sad and poignant, the song was targeted at Dads that might be missing the share-your-feelings Weekend vibe.

At the time, I thought the repetitive use of the song was so over-the-top that it became a running joke to sing it to my Dad for weeks after the Weekend.  Now, I'm not so sure.  The last few weeks, Gabriel has gotten less and less of my time.  Hannah has had some, particularly during the frequent hosptial visits, but not a lot of hang-out time.  Visions of the Cats In The Cradle dad seemed not so distant this weekend, particularly after I cancelled some Sunday out-and-about plans and turned down Gabriel's request to go bicycling outside.

So last night, we went for a family walk down to the local Plaid Pantry.  Not particularly healthy, considering the ice cream sandwich I bought for Gabriel and Mom's Jelly Bellies, but it was nice to get out together without all the hustle and bustle of a full Family Event.

All in all, it was a good night.  Not sure we exorcised Harry Chapin's ghost tonight, but I think we put if off a bit.  Judging by the banging on the wall next to me and the chattering coming from Hannah's room, the Cats aren't quite in the Cradle yet.  I'll see if I can attend to that now. 

-- Dad 

Posted by Dad at 09:31 PM | Permalink | Comments (0) | TrackBacks (0)

I'm in a pluggy-mood tonight?  My brother and I heard a really good four-piece band headed by Chris Marshall Saturday night at Insomnia Coffee.  Not only did we get to enjoy the best brewed coffee in Washington County (really, truly); we also got to hear this wonderful mix of roots rock & soul. 

If you get a chance to see Chris & his band live, definitely check it out.  Fine & fun for the kids, too.

-- Dad

Posted by Dad at 09:02 PM | Permalink | Comments (0) | TrackBacks (0)

For those who want to read tons more about parents and parenting, check out the new Carnival of Family Life at Write From Karen.  Karen has organized the Carnival by category.  I may start out with Thoughts From Dad to hear what other dads are going through, but the Inspirational section should be a great pick me up, particularly this far from the next weekend.

These Carnivals are a great way to find new blogs & amazing writers.  Check it out when you have a chance. 

-- Dad 

Posted by Dad at 08:50 PM | Permalink | Comments (0) | TrackBacks (0)

One of my favorite shows is What Not to Wear. When the commercials first started, I was appalled. I was sure nothing of substance could come out of insulting people in regards to fashion. I was wrong; it wasn't what the show was about. The show is about how everyone is wonderful and can look fabulous. The fabulousness can go with any style choice, personality or body type. The people they makeover never look like copies of one another. It is a celebration of the individual. An actual media event about fashion that doesn't make a woman who is not a size two or zero feel that they have a chance at fashion and beauty.

I was raised by an engineer/mother that came from a close to poverty upbringing.

Fashion advice and clothing advice has never been a surplus in my life. So this show has educated me a great deal and helped me realize that outward beauty is not that vapid of an idea.

So this weekend we took the kids for a rescheduled hair appointment at the local Castle Cuts. (The original appointment got waylaid due to hospitalization) It is a place geared toward young kids. The beauticians can do a straight bob while the participant is moving his/her head this way and that. There are televisions at every station, and instead of barber chairs, they have plastic cars on stands for the kids to sit in. Plus the waiting area has wall to wall toys. Most people have problems getting their children to leave.

Hannah’s not great about having her hair messed with. To listen to her carrying on with a hair brushing, you would think that we were slicing into her. She does better with IV insertions! Gabriel is a pro; he usually goes with Daddy for haircuts these days. So we got Gabriel in first to show Hannah how easy it is.

I grabbed a style book quickly because we made it to the appointment just in time. I showed Gabriel two pictures I liked that didn’t have spikes. I like spikey hair; he doesn’t. He went for the middle of the road and the stylist began. As she began to cut Gabriel said "I wish I could have my hair cut all day."

The stylist smiled "I wish I could cut your hair all day. You’re not crying, and you have perfect hair." He has my straight hair, but it falls well and never tangles.

He went off to play while I held Hannah in the Jeep seat. I said "It’s like What Not to Wear Hannah. You’re getting a haircut." Hannah’s nurse stood in front and sang to her while Gabriel and Daddy came to entertain her. The receptionist who was off came over with bubbles and blew them at her. It was a production, but Hannah came away with a new haircut that won’t tangle in her trach ties anymore.

YaY!

--Mom

Posted by parents at 09:15 PM | Permalink | Comments (2) | TrackBacks (0)

In high school, I was well-known, but not popular.  I was the kid you buddied up with in Chemisty, but avoided like the plague in anything athletic.  I had a few great friends, lots of acquaintences, and few, if any, enemies (well, except during the Yearbook strike when I was Editor, but that's another story).

Enter the digital age.  I am so popular!

Just now, I checked my email, and I have

• inheritted a great deal of money from a distant, formerly unknown relative
• been offered a lucrative chance to invest in a sure-fire business in Nigeria
• been offered a work-from-home job as a fabric worker of some type (yeah, they really have my number)
• won several contests from the likes of Microsoft and Yahoo according to the subject line

Even our blog is attracting a large number of comments and trackbacks from people apparently well-connected to the pharmaceutical industry (lots of inexpensive prescriptions offered).

Granted, I went through a period in Bellevue, WA when people mistook me for an Executive VP at Microsoft that happened to share my name.  Even got invited to join some "friends" on their boat one weekend.  I politely declined, explaining I was the Robert from Amazon, not Microsoft, but I basked in the brief glory of false recognition.

Now it's even better because the emails are addressed directly to me.  These folks know me.  They are specifically looking for me!  My conundrum is which offer to accept, which contest prize to claim, first.  But, oh, before I do that, I should answer this My Space friend request.  It's from Monica.  I don't know any Monicas, but I'm sure we'll be BFF soon!

-- Dad

Posted by Dad at 11:17 PM | Permalink | Comments (3) | TrackBacks (0)

It's four a.m., and, in a rare convergence, both kids are asleep.  When Janette gave me her report at three a.m., she noted bedtimes (my main metric):

"Gabriel didn't fall asleep until one; Hannah about ten-thirty or eleven."

In a fair approximation of Jimmy Newtron, my brain does a Brain Blast.  With a minimum of six hours of sleep apiece, both kids are down for most of my nursing shift this morning.  I smile and send Janette to bed.

So now I sit, sipping coffee, catching up on others' blogs, reading the news, searching Amazon.com and Ebay for all things Harry Potter for Gabriel, checking up on Hannah and her equipment with any change in sound or rhythm, and wondering what I should do with my remaining two hours before getting ready for the Day Job.

Still undecided.

-- Dad

Posted by Dad at 03:33 AM | Permalink | Comments (0) | TrackBacks (0)

1. There is a new Thursday Next novel by Jasper Fforde and I bought it today

2. Hannah has been giggling and cuddlely all day

3. Gabriel keeps pretending to be Harry Potter with a dialog going

4. I made a cookie I never made before our anniversary and they came out well

5. I got most of my chores done this week.

 --Mom

Posted by parents at 10:09 PM | Permalink | Comments (0) | TrackBacks (0)

We are working on recovering from some drama this week. We had to take Hannah to the emergency room on Monday. Around noon Robert came home for lunch and was saying "Hi" to Hannah. He felt a lump under her left rib bone. He had the day nurse and me confirm it. It felt odd it was spongy feeling and movable. With the recent history of abscesses and a slight downward swing in Hannah’s overall well being I wanted a medical professional who could prescribe something to see her. She had some low-grade temps, gunk poring from her nose, more than normal suctioning requirement and napping for longer periods of time. Plus her skin had taken on an overall pallid color and her dry retching made the decision easy. I made an appointment to take her to the Pediatrician’s office immediately.

The nurse practitioner that could see us so soon felt the lump to. She was puzzled as us. "With her recent history I would be more comfortable with a white blood cell count and a CAT Scan."

Before the doctor appointment I actually packed in case we needed to stay in the hospital. So Bubbie and Zadie were our heroes and took Gabriel out with them and for dinner. Robert, Hannah and I headed to the emergency room.

We got there after traffic and three decanulations later around 1700 (5:00 PM). The office had called ahead. The nurse that checked us in felt what we were talking about but by the time an actual Doc saw us it was around 2000 (8:00 PM) it seem to have disappeared. They ordered the blood work and an X-ray.

They ended up finding a little something in her lung possibly pneumonia. "Does she normally stay if she comes in for a chest infection."

I looked at the doctor and smiled "For just Pneumonia?"

"Yes"

"No, unless there is something else, give us an antibiotic and will take it from here."

She looked conflicted.

"It’s up to you. But I rather not expose her to more hospital bugs then we need to."

"Whose is her pulmonogist? I’ll just give them a call."

I gave the name and let her know we would listen to whatever she decided and waited around awhile. Meanwhile, we had a nurse who was suppose to work that night and our son to rescue the grandparents from. I think we didn’t officially get released till 11:00.

--Mom

Posted by parents at 10:01 PM | Permalink | Comments (1) | TrackBacks (0)