quirky portland

there is no doubt about it, portland is a quirky town. cars sport bumper stickers proclaiming “keep portland weird”. we are a place where a cross dresser is one of the few recognizable local celebrities. portland is a city where we once had a 24 hour church of elvis where you put in a quarter and got out a scrap of paper with a philosophical thought.

my favorite current portland quirky thing is the portland pony project. portland was platted out and building was begun at a time when horses were the main form of transportation. in most of the older established neighborhoods and on many prominent portland streets there are iron rings embedded into the curbs. back in the day, you would saddle up, ride to your destination and then tie your trusty steed to the ring while visiting or doing business.

i grew up in a house built in 1912 on a street with several horse rings, and even as a child i loved the idea that my house and my street were old. i have always been fascinated by “the pioneer days” as i think of them. my best friend and i used to walk to the library each week through a block that wasn’t developed . we dubbed our route “the oregon trail” and carved that into the dirt. i loved looking at the photo of our house from the 1920’s when it was one of the few in the neighborhood.

a few months ago, someone began tethering small plastic horses to rings in my neighborhood. the first time i noticed one, i thought some child was going to be very sad to have left his or her horse behind. when i got closer i realized that the tiny creature was tied to the ring in a permanent way with a thin metal cable. initially,i assumed that it was a reed student senior thesis art project. i have since learned that it was a local artist who wanted to draw attention to portland's history.

yesterday ruby , hazel and i, armed with 4 tiny plastic brier horses, some wire, farrows and a hammer wandered eastmoreland looking for horse rings. there were many and all were empty, just waiting for a horse to come along needing a place to be. we carefully selected a place for each tiny steed and tethered them to their new homes. one now lives in front of granny and pop’s, one at the base of stevenson's hill, one in front of shar and dave’s old house and one in front of elizabeth’s. ruby was pleased to know that she’ll be able to walk and visit all of her horses.

i had a smile on my face the rest of the day. i love being part of the quirkiness of portland.

home!

this tile was in our bathroom at the hospital. it was tiled all in white, excep for this one and one that was a moon and stars. i have always believed that golden retrievers are my angels and this confirms that for mez!

hazel coloring after her first nap at home. if you look closely you can see that her lips are rainbow hued...


this is hazel saying "is it time to go yet?" at the hospital.

post op day 3- WE'RE HOME!

hazels leg and foot on the side with the femoral IV lines was cold yesterday, they could not find a the expected pulses in her foot, and the capillary refill was sluggish. so she got some doppler studies of her foot, about 4 different people came in to see if they could feel them with out success and ulitmately they gave her some heparin ( a blood thinner) overnight to see if it would bust up what they thought was a little clot. apparently this is common after some catheter type heart procedures which are done on the tiny babies, and they thought that perhaps because she is small that this was why her circulation there was not great. this morning her foot was pink and toasty and so it was either the running in the hallls or the heparin.

bright and early this morning -post op day 3, the “team” came in one by one and gave thier blessing that it was time for hazel to go. i packed up her stuff , my stuff and loaded it in the car, they pulled the i.v and we were in the car heading home at 9:40!

so hazel is tucked in bed at home sleeping soundly, my mom is keeping watch and i am at kaiser getting perscriptions filled.CRAZY!

post op day 2-pm

the miracles of modern medicine and the resilience of kids is amazing. hazel decided that she had had enough of the bed or sitting in my lap and this afternoon she has been running barefoot, iv taped up tight, down the halls. she is smiling and talking to everyone and is her usual impish self. i would not have imagined this 24 hours ago.

she had an echocardiogram today, which was “normal” no leakng at the repair or the valves. all of her cardiac monitoring has been normal and her labs too. she looks a tad bit pale, and there is that inscision on her chest, but otherwise all is well.

she hasn’t really eaten much so my job tonight is to tempt her with some food and drink so that we can go home tomorrow! who would have thought ?

a good morning

after a good night. once mama bear got her baby bear appropriate pain management, things were much much better. hazel slept well in several stretches last night and woke up happy. i opted for better living through chemistry too and slept as well. what a relief! yesterday seems like it was the nadir of this experience. with a couple of bright spots-
kelli's greek meatballs and lemon couscous!
kristy's dry sense of humor, bag o magazines and company.

this morning my mom is here while i take a little break. it'sa beautiful day- it rained yesterday so that makes for the perfect crystal clear vista from "the hill" as it is called. out floor has windows looking out on the river and birdges along with an upfront look at the controversial tram construction. i went for a walk to the trailer to tidy up a bit.once again i was struck by the incredible kindness of jim, the man who lent it to me. i am quite smitten with the tiny turquoise stove and cute wooden cupboards with animals carved in them. in fact, i am considering a change from the westy to a pop top or tow behind of some kind. but i can't yet part with the westy.

the plan for today is to get hazel to eat and drink and then take out her i.v, the only one left is in her foot so she can't walk yet. once she is taking all of her medicines by mouth and eating well, i think we may get sprung from here!

thank you (again) to all who have held my little family close in your hearts.

post op day one, tough day

so it turns out that the sighting of the handsome security guard who rescued me was the highlight of my day. ( except for visits from kristy and kelli who arrived in the midst of the tough stuff so i didn’t really get to express my appreciation for the food and care packages. THANK YOU)

today was really hard. harder in fact than yesterday, which was hard too but in a different way. waiting for surgery, and sitting through surgery were both difficult, but i knew that my job was to wait and be patient. (believe it or not, i can do that when needed.)

today my job changed to being the one caring for hazel and advocating for her. we got moved out of the picu to the regular floor this afternoon about 20 hours post op. i had been told that she would stay at least 24 hours and maybe more, so this was early. but s he was stable and the floor was busy. i have to say that the picu nurses are stellar. really really on top of pain management and since it is one to one or one to two kids, they are there for anything and everything. they were incredible.

i had heard that the regular floor is a different story . today i found that out the hard way. hazel went from getting iv narcotics every 30 minutes to getting tylenol and torodol every couple of hours. hmm, open heart surgery and tylenol for pain management less than 24 hours after the bone saw and the knife... i should have figured that one out sooner. we arrived here at 2:30. she was sound asleep but got rudely awakened when they pulled her pacemaker wires and changed her bed. it was definitely down hill from there. and i sat in a hard wooden rocking chair- think your grandparents- until almost 7pm trying to get her calm enough so that i could put her in the crib so she could really sleep, and i could pee and eat. sure i could miss a few meals and survive , but its grim to be low blood sugar and sleep deprived. some of the time she was sleeping lightly, but not enough that i could put her down. as the afternoon wore on, she got more and more fussy. the nurses who were perfectly nice, dutifully took vitals and brought in tylenol but didn't;’t do much more. in fact when she was crying and screaming, they would quietly close the door and say “i’ll come back”. it finally it dawned on me that she wasn’t mad, she was in pain. so after nearly 2 hours of crying she got some iv meeds and has been asleep for the last 2 hours.

i just turned into a high maintinence mom and talked with the night nurse about continuing the narcotics and keeping her comfortable so she can sleep. so i hope that the night is better than the day. vitals are due soon so we’ll see how that goes.

i’ll be scarlet o hara for a few minutes and think that tomorrow is another day.

morning activity

ok so it wasn’t actually the land of nod, it was the land of toss and turn and check the clock. but i have to say that it was better than yesterday. the day of surgery i was so concerned about having to keep hazel npo ( nothing by mouth) after 7 am , that in the middile of the night i got up and made her a bottle of pediasure. ( think melted vanilla milkshake) i didn’t want to disturb ruby, who was sleeping on the night stand side of the bed, so i put the bottle propped up at the end of the crib. i woke up in a cold, wet vanilla puddle at 4 am. the bottle had tipped over adn 6 oz of it became absorbed by the matress, comforter and sheets.ying woudl likely love the smell of vanilla wafting in her nose as she sleeps but not me! guess it’s time to call stanley steemer!

it was so nice to have company last night in the trailer. i had a great dinner and a beer and some laughs with auntie boo. mrs fu lee made an appearacnce in absentia that had us both snorting with laughter. i opted for a beer over xanex . so after some small chunks of sleep i got up and made a cup of coffee at about 545 so that i could go back to the hospital. when i went to open the door it wouldn’t. hmm, i tried a few times and then it dawned on me that when britta left she must have latched the padlock hasp. i am a week bit claustraphobic so i was sweating and hyperventialating when i called security to come and rescue me. a handsome african american man came and let me out, he was very friendly and it turned out to be a pleasant way to set off to the hospital.

hazel had a good night, and she is doing very well on the timeline to recovery. they took her off the respirator before she came to the picu and this morning they took out her chest tube, she still has a lot of wires and pariphinalia attatched to her, but things are progressing well and we may get transfered to the regular floor today sometime. her pain is pretty well manages with the combo of iv meds and tylenol. the nurses are top notch and are very in tune with the kids.

BIG day for such a tiny girl

I just returned from tucking Chris in in her vintage 60's trailer. We shared a beer, some "so good they are bad" snacks and a few good laughs. It was hard to go. Today was tough. I was happy my day was filled with spinning, cooking, carpooling and cooking some more to keep my mind occupied. Each time I spotted a clock I thought "how is Hazey now? Are they almost done?". Yet, just as I thought surgery was finished we got the call that it had only just begun. Such a long and emotional day for Chris and her mom and especially Miss. Hazel. I feel lucky to have seen her just out of surgery. I am so glad I could be with Chris tonight. Initially my heart sunk seeing Hazel, such a delicate tiny being hooked up to so many tubes, wires and noisy machines. I felt better the longer I stood by her side, holding her hand and talking with her nurse Keri. She was calming and comforting and so supportive. She encouraged questions and was so willing to do anything and everything to make Hazel as comfortable as possible. I have such admiration for those that work in the medical field and are so good at what they do. It was obviously very hard for Chris to leave, but she is exhausted and tomorrow Hazel will need all that she can give. All who worked there made me feel okay to leave knowing Keri is at her side and the whole team is there to give the best possible care that can be given. She is in very, very good hands. And knowing Hazel, with her strong and fiery spirit, I am pretty sure her recovery will be quick and amazing.

surgery update

5:10pm
the operating room nurse just called to say that things are going well, just as expected. they got started about 4:30 pm after having it take a little longer than expected to get all the i.v’s in place.

as i’ve sat here on the 8th floor virtually all day, i’ve seen many families come and go, watched people leave work to go home and now its essentially a ghost town. the lights are off , the reception desk abandoned. but behind the doors of the perioperative care area, and the o.r., the evening shift has arrived, report has been given and its a quiet sea of activity.

i’m trying not to think of what exactly is going on for hazel, i’m just focusing on the fact that i know she is in good hands. everyone we have come into contact with today has been incredibly nice, and helpful. when things were so delayed , several perioperative nurses took time to play with hazel and didn’t seem at all phased that she was keeping them from charting.

the o.r will call me again in an hour to let me know how things are going. i have no idea when they finish.

6:35 pm
i am the sole person in the waiting room. the lights of portland begin to twinkle below the sky bridge that connects one part of this campus to another. i sent my mom home to pick up ruby, auntie britta is on her way here to keep me company for the last hour or two before hazel goes to the picu ( pediatric icu)

diane the o.r. nurse called at 6 pm to say that they were done with the repair and were at the point where they were just seeing how her heart was doing. i think that meant that they were taking her off bypass and seeing how things were functioning. because of the location of the vsd, there is a strong possibility that she will need a pacemaker at least temporarily. the hole was right in the place that the av node is located. the av node is the place in the heart that sends the electrical impulses telling it to beat and in what rhythm.

8:10
hazel is settled into her bed at the icu. she is doing great according to the nurses. the surgery was uncomplicated and so far so good. she roused a little when they were taking a chest xray in looked right at me and said “mama”. i really hate to leave, but i know that tonight i can’t do anything for her, and i need to have the energy to be ready for tomorrow, which is when she will really want me. so i tucked her in with her tiny pillow ( shades of lisa) polar bear , special green blanket and her night night.

i’m heading to the trailer to have a bite to eat, drink a beer to help me sleep and go off to the land of nod.

surgery day

we arrived here at the hospital at 10:45 am for our 1 pm surgery time. the first case "went long" as they say, so hazel and i and my mom walked the halls, ran the halls, played in the playroom and basically entertained ourselves until they called her back at 2:50. she was in good spirits and made friends with everyone we met.

it takes a couple of hours to get all the stuff in place that they will need:
the anesthesia
the iv sites
the ventilator
the bypass machine
once those things are in place they will have dr underwriner and dr wilkie scrub in and begin. they expect "cut time" ( sorry to be so graphic) to be about 4:50.

so its a long day here for us. thank you to all of you who are keeping us in your thoughts, lighting candles, sending peace and prayers.

the pre op

my house looks like a bomb went off . if not actually inside , ten certainly nearby. there are piles of ‘stuff’ everywhere: hazels hospital pile, ruby’s granny ‘s house pile, my hospital pile, my entertainment pile, the coffee supply pile, the snack pile, the technology pile ( cords, cables and devices for camera and computer). you get the picture. its a bit like packing for china, i know that i can get most things there but i just want to have what i want with me.

the pre op visit was today. it was without surprises. after hazel got measured , examined and poked, i met part of the surgical team. as i often i am , i was struck by how young the guy looked! he was thorough and answered all my questions. i took a short tour of the pediatric intensive care unit and got a look at where i’ll be spending some time. i have to say that being a nurse( - well ok so i never was a REAL nurse, but having gone to nursing school,) none of the equipment or surroundings really scare me. equipment is after all just equipment. but the babies look so small in the beds that is what hit me- the smallness of my child and the vulnerability of the human body.

we are the second case tomorrow, which means that hazel won’t go to the operating room until 1 pm. we are supposed to be there at 10:30. i dread the morning, keeping her from eating and drinking and then watching her go through the big double doors.

i’m not sure if it helps or hurts to know exactly what they are going to be doing back there. some things might be better left vague.

i just found out out that the type of vsd she has actually has a special name: a supracristal vsd. so i’ll be using the hospital wireless to do some net surfing to learn more about it. that is unless i decide to take a page from hallie's book and shop garnet hill.

the kindness of strangers

at the 11th hour, the kindness of strangers prevailed, and i have an rv to call home away from home. jim, a painter from borning who has a daughter that works for a family at rubys school, kindly and generously set up his little trailer for me at ohsu. it has everything i need: stove, bed, port o potty and most important its a a space away from the sights and smells of the hospital.

the spot looks over a ravine that is filled with trees, some beginning to change colors already. its a peaceful spot, and should provide me with what i need.