quest for a faerie child

all in all

For a period of time today, the weather was truly glorious.  The sun was shining.  The sky was a perfect blue.  Although it was not what you could call warm, it was comfortable in a fleece pullover.  I took the boys on a bunch of errands and was so very excited to see the mountains out in all their snow-covered glory, a sight not often seen in the dead of winter in Portland. 

I always to hate it when people come to visit Portland for the first time and they do it during winter because I love the views of Mt. Hood, Mt. St. Helens and Mt. Jefferson.  I proudly proclaim to all my flat-lander friends and family, "There really are truly majestic mountains out there.  I promise you.  You just can't see them because of all the rain..." 

But you just can't get a feel for how beautiful it is around here if they aren't visible.  Mt. Hood is the most beautiful of all.  Though, I'm sure Mt. St. Helens was quite stunning before the top 1/3 of it was blown off in 1980.  Now it looks somewhat incongruous to me.  It looks like a MASSIVE hill with a slightly rounded top.  Just by looking at it, you can tell it should extend quite a bit above where the top is, but yet it doesn't.  I've heard when it blew, Portland was pitch black as night in the middle of the day and ashes clogged up everything.  It must have been quite a site.

And a mess....

Today the mountains were out and I had a fabulous view up on the hill and then while driving back down it.  The "Hill" is somewhat of a misnomer.  It is the nickname for OHSU because the University and Hospitals are called the Marquam Hill Campus.  It is not really a hill.  It's more like a mountain to people who don't live in mountainous areas.  The campus, itself, sits in a snow zone, which means it is high enough above sea level and steep enough to require chains or traction devices be carried during the winter months.  I think most people ignore that, though.

I know I do.

I've regretted it from time to time, but I haven't really made any move to change it.  When you are up on the hill, the view is extraordinary.

So anyway, the weather was fabulous for a time.  I decided to sit outside on our front porch in the sun and write for a little bit.  As soon as I got my laptop, the sun clouded over, rain clouds are beginning to move in and the temperature feels like it dropped 10 degrees in the last 10 minutes.  The weather is trying to thwart my creativity.

I'm convinced of it.

Maximus is doing well.  I didn't post what was going on with him lately here, because I posted on his website.  These days, finding the time to update one site is difficult enough to manage, much less both.  So, if you want to know what is going on in the world of Max, you'll need to check out his website:  http://maximus297.vox.com.

We are celebrating Rowan's first birthday tomorrow and it seems he has chosen the last couple days to finally start taking steps on his own without any coaxing.  I'm not entirely sure you could say he is walking, but I think he is doing his best to try and attain that prior to his actual birthday, which would probably be Sunday, I guess.

All in all, life is pretty good.  All in all, I am pretty content.  All in all, I am so fucking glad it is Friday I could just scream it from the rooftop.

Or the porch as it were...

continuity of care versus the government

I am having a bit of difficulty.  I am not ashamed to say this.  I am having a bit of difficulty because I don't deal well with change.  My issue is in trying to separate out what are my own issues related to change versus what I genuinely feel is the right thing for Maximus.  I've blogged about this in some fashion or another ad nauseum, but here it is again to raise its ugly head.

The truth is I am having a bit of difficulty in switching gears related to how Max receives his care and who my primary contact is with regards to that care.  Once you begin dialysis, you suddenly become a patient of the dialysis center, rather than a patient of the nurses who so ably took care of you for years prior.  That trust you have built over years, must suddenly begin again with new providers, even though your doctors remain the same.

This is happening with Max right now and I guess I am just not dealing very well with it.  I believe I was doing fine until the center began pressing me to get Max's labs drawn elsewhere.  I just had a long conversation with one of the dialysis nurses regarding this and it has me feeling really emotional, in a way I haven't felt for awhile.

Apparently, this pressing is a result of redtape related to medicare billing, which in and of itself just irritates the fuck out of me.  Why should Max be forced to go somewhere else, simply because the government perceives it as fraudulent if he gets his labs drawn at OHSU versus at some other lab at some other hospital that I and noone in our family has ever stepped foot in?  You would think in a situation where you are dealing with babies, continuity of care would be of primary concern, not whether or not the billing can be done according to federal guidelines.

I am not naive enough to actually believe the world operates in a manner that would be of most benefit to the patient, but I am idealistic enough to wish it were so and to be downright incensed when it is not.

Max has had his labs drawn by the same people his entire life.  They know him.  They know his body.  They know his veins and he has recently attained a comfort level with them where I now only need to hold him on my lap, rather than having to hold him down with several other people, while someone else draws him.  I can't tell you how far less stressful the whole process has become in recent months.

Whenever we have to go elsewheres, whenever we have to go to the outpatient lab versus our pediatric lab, the experience is horrible and always ends with Max being stuck no less than three times with bruises and track marks on his arm afterwards.  How as a parent are you supposed to watch this, participate in it and not finally say, "Ok...enough is enough"?

I am his advocate.  I am all that stands between him and needless sticks.  I am all that stands between him and people who just want to try it one more time, and one more time, and one more time, and.one.more.fucking.time.

I have heard through the grapevine that lab draws at this other hospital are oftentimes exactly what we experience in outpatient and that parents are always coming to OHSU from this hospital with stories just like what I have described above.

I finally just laid out there for this nurse and described what I have heard, described how I feel and explained that I am his advocate and I do not want to place him in a position that is even more stressful when he has to go through so fucking much in his life.  I said, "I'm not trying to make more work for anyone.  I'm not trying to make this difficult.  But, I am telling you that I feel I am looking out for him and I am going to have a really difficult time taking him to some other lab if I experience anything similar to what we have at other non-pediatric labs."

She took that all in stride and I do think she genuinely understood what I was saying, but do I think it will change anything?  No.  Not really.  I fully expect before long, we will be going to that other hospital for labs because it is uhm.. legal and probably much easier for them, or however you would really like to describe the set of circumstances forcing us into this position. 

It is certainly not because it is better for Max.  And honestly, that really just pisses me off.

which is basically...

I have had what could be called a day.  I feel as if I have had what could be considered ten days, all rolled into one.  My plan for today was to get up and take Max and Rowan up to get labs for Max, come back and work until 330, get Max's dialysis ready, play with my boys and put them to bed around 630pm.

Instead, my day consisted of waking up to Max with a terrible cold, attempting to track down one single person to tell them I was not going to bring him out of the house for labs, going up to the hill by myself to drop off and pick up admissions files, finding out right after I got home that I needed to get a sample of Max''s fluid to rule out a budding case of peritonitis again, getting the sample and filling Max manually (which I had to do twice because I fucked up the first time), bringing the sample up to the hill again, waiting around at the lab FOREVER because noone knew what to do with the precious sample. worrying about Max all day long because all he did was sleep, consulting with nurses several times about his unbelievably low blood pressure, not getting a single bit of work done while Sarah was there, waiting until after the kids were in bed to actually work, and feeling like I am a chicken with my head cut off.

whew.

That's life in the Max lane -- never ever what you expected when you started the day.

The good news is that I highly doubt he actually does have peritonitis.  I think they were being overly cautious. The bad news is he does have a really icky cold.

The good news is that baby Ro seems completely unaffected by this bug and I am hoping to keep it that way.  Rowan, who seems to barely get any air time or word-time, as it were, is just about the sweetest, most uncomplicated boy in existence.  He has an impish grin that lights up the room and a giggle that is nothing short of infectious.  He is the light in our tunnel of worry and I thank the universe that he is our baby.

He has been on the verge of walking for two months now and is only just now deciding it might be ok to take a step or two on his own.  I guess he is just taking his own sweet time.  He has graduated to mostly table food and his absolute favorite thing right now is tiny, baby sandwiches of whole wheat bread spread with Toby's tofu pate, which he inhales faster than you can place them on the tray.  Yum Yum in Ro's world.

I am working on teaching them both baby sign.  This is only a recent development, so I will continue to post how that endeavor is going.  Max looks at me like I am weird and Rowan thinks it is just about the funniest thing imaginable, but I am hoping this will help Max in his communication.  Common words like eat and milk are completely lost on Max.  But eat is probably the first thing Rowan will pick up.

We're working on Mommy, Daddy, play, ball, baby, water for Max and eat for Rowan.  We'll see how it goes...

I just have to say when I thought there was a possibility they might want to admit Max due to the peritonitis fear, I really just felt like jumping out a window.  The worst thing I can possibly imagine right now is another protracted hospital stay that does not involve the word "transplant".

I finished the staph infection movie last night and promptly decided I hate it.  I have decided to rework and make it about this year's hospitalizations, rather than just about the last one because frankly, I don't have enough footage from the staph one to create a decently visual movie.  I was too worried to take my normally voluminous footage.  If you combine them all, I have more than enough and honestly, they all lead to the same thing.... the eventual infection and I think it gives a broader perspective of what we've been through in the last two months.

Which is basically hell....

Wordle me cloud

Max TV

It smells like spring today.  It must have rained just enough to barely wet the streets, the ground, the cars and now it smells like spring, which makes me just a tad bit excited.  Though, spring in Portland generally means rain and in fact the 10 day forecast shows nothing but rain, rain and more rain.

Maximus fell off the wagon again, that is the antibiotic wagon.  He just came off all antibiotics and last night we began him on one again due to the spreading redness around his site.  We also think he is a bit dehydrated due to the dialysis therapy.  Oh and he's not gaining weight, despite increases to his formula towards the end of this week.

There you have it, an update to all things Maximus in one paragraph.  When do I ever manage to make so conscise an update?

Pretty much never.

I'm almost done with the movie about Max's infection, the longest one yet at just around 13 minutes, so far.  I need to burn it to DVD and check it out on the television, but I have just a bit more to finish it up.  James says I've gone the reality TV route this time because I recorded myself in the hospital talking about things.  He hasn't seen the movie yet, just heard clips here and there as I edit, edit and edit.  I guess it probably does have a reality feel to it.

Perhaps we should look into getting a channel for Max.  We could call it Max TV.  I wonder how many people would tune in....

dear universe, thanks - love me

Dear Universe,

I'd be ever-so-grateful if I could just have a half-day where I didn't have something related to Maximus to worry about.

Thanks so much.

Love,
Me

Maximus has learned how to unscrew the cap on his catheter.  Hallelujah.  I was changing a horribly poopy diaper, when I looked up to see him with the catheter in one grimy little hand and the cap, in the other and I'm pretty sure I saw his hand brush against the tip of the catheter and then the catheter brush against the outside of the cap.

...at which point, I freaked the fuck out, while visions of horrible hospital stays flashed before my eyes.  I wasn't exactly sure what to do and so I grabbed the cap from his hand and then recapped the catheter.  I felt ok, for exactly one moment and then I realized I probably shouldn't have put the compromised cap back on the catheter.

I masked up, ran out and washed my hands to the tune of Happy Birthday twice and ran back into the room, grabbed a new cap, and switched them both.  Then I finished up with Max, let him down and quietly continued to freak out a little bit, until I finally decided to call the nurse on call.

She calmed me and told me as long as I did put a new cap on fairly quickly and as long as I don't use the catheter for at least 10 minutes, it will re-sterilize and all will be well.

A huge sigh of relief was heard in the faerie household.

Then later, I was getting the Maximoose ready for bed.  He'd completely screwed up the dressing on his site to the point I had to tear it all off and redo it.  While I was doing so, I noticed the site was starting to look really red again.

And again, visions of horrible hospital stays flashed before my eyes.  I washed the site really, really well and dressed it up, all while being screamed at by Max, who was irritated with me for some unknown reason.  Eventually, I had to call in the big guns (read James) to hold him down, while I finished.  By the time I actually put him in bed, I was ready to kill him and was unbelievably worried for the second time that day.

I called the nurse, AGAIN.

She was nice to me, AGAIN.

We're waiting to see how things look tomorrow, before proceeding.  I apologized for taking her time and repeated for the second time that day that I am now simply paranoid ever since the hospitalization.  I think I'll be repeating that forever, and ever and ever, Amen.

I am repeating it and feeling it even more because I am currently reliving our hospital experience over and over again, as I attempt to make a movie about the whole experience.  That's the only bad thing about working in video.  I am transported right back, as soon as I begin and feelings of worry, despair, lonliness and frustration all begin to descend upon me.

I have a pet peeve to post about, but yet I am way too tired to do so.  It's good... so stay tuned.  Perhaps tomoorow I will recall exactly what I am now talking about and perhaps not...

does the guilt ever really go away?

Today the weather was absolutely beautiful and I felt like supermom when I finally got off my ass and took the boys to the park for the first time since early December.  It felt unbelievably great to get out and walk, even though we only did about half of our normal summer trip.  Both boys passed out cold fairly quickly as we set upon our journey and I had a good 20 minutes to clear my thoughts.

The first crack in the supermom facade occurred while we were at the park.  Maximus was dancing around (read actually stumbling) and he danced right off the first stair of two going down into the play area and landed on his back.  He didn't cry.  It didn't even seem to phase him. 

It phased me, though, even though I didn't show it outwardly.  I made a mental note to myself, "You need to watch him even more closely now.  He's not paying attention to what he is doing or where he is going."

The second crack in the facade occurred about 20 minutes later when Rowan awakened from his 'walk-nap'  I picked him up out of the stroller and turned around just in time to see Max take a total nose-dive off the same damn step and this time he landed right on his forehead. 

This time I had the following thought, "Oh jesus... he's going to his his...." right before the wail began.  I hustled over to him, set Rowan down beside us and picked him up, which caused Rowan to begin wailing, as well.  For a period of time, I had both of them screaming at me and the remainder of the playground peering at me.

Ah well... I have a thick skin and Maximus has a huge bump on his forehead right where one of those mysterious horns I posted about so long ago, seems to be protuding.

Within minutes both boys were happy again and we proceeded to have lots o' fun at Piccolo park.  My supermom status began to raise in my own estimation once again.

Flash forward four hours to when I was putting Max to bed.  I walked out of the room because I needed to wash my 80 year old hands for the billionth time before I hooked him up to the dialysis cycler and something told me to get back into the bedroom quick-like.  I opened the boys' bedroom door just in time to see Max taking his 2nd complete nose-dive of the day from his crib onto the floor, all because he has this thing, of late, with trying to turn the feeding pump off and on and I had moved it far enough away (I thought) from the crib to discourage such activity.

I am here to say that plan was a horrible one because all it did was encourage him to try to reach further and further for it, until he tumbled from the crib and landed on his back, once again.  In the space of about 6 hours, under my watch, my firstborn, seriously-ill child fell down stairs twice and fell out of his crib once.

I think we can safely take my supermom title and file it away under derelict, just in time for Child Protective Services to come knocking on my door.

I just have to ask:  Does the guilt ever go away?  I mean really.... does it?

my lazy procrastination...

I've been riding high over the last 36 hours because I found out a hotel I called to see if we could get a discount for Michael and Kerri, has decided to donate a suite to them for the four weeks they will need to be in the area.  It is a beautiful hotel.  It is my favorite hotel in all of Portland and now our donor will get to convalesce there and that makes me unbelievably happy.  Moose and I were going to pay for this because we genuinely feel it is the very least we could do for the sacrifice my cousin's family is making for Max.  We didn't want them having to worry about how to pay to come and stay here while one of them is having a kidney cut out and placed inside my child.

Somehow that act causes any issues of money or debt incurred to pale in comparison from our perspective. 

So, to find out the hotel was simply going to donate a suite because they were donating a kidney..., well it just begins to restore my faith in people, in companies.  I think over the course of my life, I have fought against becoming jaded, generally somewhat unsuccessfully.  However, since I gave birth to Max, I feel as if the universe is trying to tell me something.  I'm not entirely certain, but it almost seems as if the world or the universe will take care of you if you let it.

There have been overwhelming acts of generosity thrown at us in the last month.  A collection was taken up at work when Max was in the hospital for so long.  I think they decided to give us money, rather than set up a food delivery service, which is something they did for us when Max was in the NICU.  The response was so overwhelming that I was given 3 separate envelopes filled with cash throughout Max's stay and then afterwards, as well.  I can't begin to tell you how much money was in those envelopes.  I was astounded and grateful by the first envelope.  But then when number's 2 and 3 came rolling in, I really was pretty speechless.

Though, I'm not sure why that level of support really surprised me, because Max is very dear to a lot of people in the School of Nursing.  Many, many people were invested in him from the day he was born and a select few, from his first trimester. But, I think anytime you are confronted with the evidence of support in a manner such as a huge wad of cash being handed to you, multiple times, well... it is overwhelming.

In faerie household news, I am happy to report I did finally find my iPod and a collective sigh of relief was heard all over Portland, or perhaps just SE Portland, or perhaps just on SE 42nd Ave between SE Division and SE Clinton.  I also finally got off my ass and hooked up my Wii to the new TV setup.  This has been on my 'list' of tasks to do in my copious spare time for over a month now.

I broke out DDR II, a christmas present from my mother, Monday morning and found I have absolutely no clue how to dance.  Though, I suspect this has more to do with the fact that I didn't read the booklet and just have no idea how you are supposed to utilize the dance mat.  I plan on breaking it out in workout mode this evening once the kidlets are in bed.

I need to exercise in the worst way now that the PNW weather has basically put a big huge hold on any of the outdoor activities of last summer.  I spent all late spring, summer and early fall walking my ass off with boys2 and I haven't done that since just before the Arctic Blast of Christmas 2008.  Needless to say, I am now extremely out of shape again and missing my daily exercise.

Some very kind person left a comment on here asking about donating to our donor's cause.  This is not the first time this has come up, in terms of people asking me about donating.  It's just that I haven't truly gotten around to setting something up.  Though, I did just find out in the last couple weeks that now that Max is on dialysis, I think there is some foundation that will now help us with raising money and will even allow us to set up a website for Max on their server which will then allow us to accept donations.  I have the literature on it.   Now, I just really need to find an opportunity to see what they can do for us and what this entails.

I will put that on my list of things to investigate this week.  And thank you for the inquiry, truly!  Not only is it heartwarming, but it provides the much needed impetus for me to get off my ass and do something about it. 

And I mean that seriously.  I've posted about it a billion times before, but I am a natural procrastinator and when something requires a bit of digging before it can done, those tasks are the worst.  But, this is extraordinarily important and deserves more than my lazy procastination.

valentine's day

Our valentine's festivities included lunch and a walk around downtown Portland yesterday.  The dialysis regimen prevents us from doing nightly activities these days, so we have to settle for several stolen hours while the nanny is here and always during the day. 

I am sure you will not believe me when I tell you, I got carded once again whilst attempting to order a bloody mary, which seemed the perfect drink given the brunch menu offered by the restaurant.  The young, whipper snapper first asked me if I liked salt and if I wanted it spicy, both of which made me salivate before dropping the ID bomb and then refusing to serve me. 

I did not show him my 80 year old hands, but I wish I had.  I was so pissed, irritated and dumbfounded that this has happened to me FOUR fucking times since New Year's that I could barely speak.  I sputtered, "Oh my god... are you kidding me?  Do you have any idea how old I am??  I'm 38 years old."

While James starts going, "Dude.. he's not going to give it to you," and then "I bet you are really going to get your license taken care of now."

The BOY who was serving us, who I think I could conceivably have given birth to, says "I'm sorry.. you look so young."

Bah.

I'm so past the flattering aspect of this and feel it is now bordering on harrassment for fuck's sake.  I mean, yes... I obviously should have my driver's license, but good fucking god.  I've been buying alcohol legally for 17 years now.  Why am I all of a sudden getting carded so much??  I probably haven't gotten carded in several years and now everyone and their fucking brother suddenly thinks I'm so damn young?

I was telling James that I'm now concerned I won't be able to buy the wine at the store and his response was to laugh out loud and then say, "I love having a hot, young wife."

Thanks baby.

When we got home, I made a distressed call to my mother and had to leave a message which went something like this, "Hi Mom…I’m just calling to tell you we have GOT to get my birth certificate taken care of this week.  I just got back from my valentine’s lunch where I got carded ONCE AGAIN and I am sure you will understand how irritated I was when I could not get my bloody mary.  Please, please call me back.”

I need to get this straightened out.  Don’t I?

paying for sleep

I slept in today.  In our world of two babies, age 2 and almost age 1, where getting sleep is always at a premium, this would seem like a good thing, right?

wrong.

Let me explain to you why this is bad.  Currently, we are administering an extremely high-powered antibiotic to Max every morning through the patient line on the dialysis cycler.  He utilizes special tubing called low-recirculation cassettes because he is so small.  One of the great things about these are that they have something similar to an IV port on the patient line.  It allows you to inject things into the line during the dialysis therapy.  If you inject medication at the right time, the natural cycle of the dialysis cycler will push the meds into Max's belly.

The key statement above is:  "If you inject the medication at the right time..."  Injecting the medication at the right time entails notating at what point you put the Maximoose on the pump the night before, adding approximately 11 hours and 40 minutes, waking up, drawing up the injection, watching the cycler as it drains for the last time, pushing STOP as soon as it moves to the final fill cycle, clamping the line, injecting the med, unclamping and pushing START.  This needs to happen at the final fill because the meds need to dwell in his little abdomen for a minimum of 6 hours to be effective.

If you oversleep, well...uhmm... you miss all of the above and when you enter the room, you see "End of Therapy" displayed on the cycler and then you sigh deeply, while uttering "oh...shiiit..."

What this now means is that I need to do a midday dwell with him, which entails the following:

Getting out a 2000ml Ultrabag.

Hanging it from the IV pole

Hooking Max up to the connector

Clamping fill line.

Draining the ultrabag down to 300ml, which takes several minutes.

Injecting medication into the ultrabag.

Draining Max, which includes a myriad of clamping and unclamping various lines and takes a bit of time.

Filling Max, which includes a myriad of clamping and unclamping various lines and actually goes quite fast.

I neglected to mention the fact that I need to be masked and wash my 80-year-old hands 10,000 times during this process.

So, you see.... managing to wake up at the right time is a whole lot less work than getting a little more sleep and having to do a midday dwell.  I feel like shooting myself right now.

Ah well, there's nothing I can do about it.  It will be good practice, I guess.  Yes, that's what I will tell myself as I fight with the Maximus about staying put during this whole process.  God help me.