quest for a faerie child

exhaustion reigns supreme

It is 3am Friday night and I am struggling my way through my third night in the hospital with Max and my second straight night getting almost no sleep and I am truly not exaggerating when I say that.  As of late tomorrow morning, we will have been here 3 days.

Usually at 3 days in to a Maximus stay, I am beginning to itch to get out of here.  It is generally around this time when I begin to feel as if we are being held hostage and it is my duty to break us out of here.  However, the truth is that this time Max is so sick, I don't know that I could handle dealing with this stress, this worry at home.  I would rather have him here where his wildly fluctuating BP and his incessant vomiting can be closely supervised.

Yesterday he began vomitting up bits of blood, which scared us, but in the end they decided they think it is due to irritation of the stomach and esophagus due to the vomiting, in conjunction with the fact that his dialysis solutions are coming to us with Heparin in them, which can cause bleeding episodes.

Today we noticed his IV placed in the ER had clotted and so when they made the decision to give him some IV fluids today, I ended up having to supervise and then put my foot down as 6 different people tried to place an IV multiple, multuple times until I put a halt to it and told them they had one more chance before we were going to have to come up with a different solution.  I mean, my god, I can't just sit there and watch one or two people try every single entry sight to the point where they've blown them all, not to mention the fact that Max is so done with everything and imagine how you would feel watching your child get poked needlessly over and over again.

He clings to me when I pick him up and if I"m carrying him down to the procedure room, his screams start before we even get to the door.

I've overwhelmed and exhausted.  We decided to have James take Rowan home this morning/afternoon to have Sarah watch him while James did some work.  It worked out so much better to not have to worry about baby Ro, who doesn't understand what is going on and is so attached to his big brother that he starts screaming uncontrollably as soon as Max begins to cry.  In fact, it worked so well for Rowan that we decided James and Ro should go home to sleep tonight.

So, they are home, while I'm keeping watch over Max.  All I can tell you is that it is a good thing I am  here.  We keep having issues with the cycler due to how ill Max is.  He is absorbing a portion of the dialysis solution during every cycle and it causes the machine to eventually freak out and not be able to go any further because it thinks Max has all this excess fluid in him.  But really Max is absorbing it and then getting rid of it because he pees like a racehorse constantly.  Many patients with CKD don't make any urine and so the dialysis cycler is the only thing that is actually removing fluid from them.  If you were in this type of a situation and suddenly you started absorbing the solution but the cycler couldn't pull the excess fluid off of you, you would start swelling up like a balloon.

This is not an issue with Max right now but the machine assumes it is.  Once you've bypassed the alarm once you can't do it again and all therapy comes to a raging halt.  Last night we bypassed in the 5th drain out of 6.  Today we made it to the 7th drain of 8 before I had to bypass. 

So, I say it is a good thing I am here because I just spent 20 minutes explaining to the pediatric resident what was going to happen when Max started to drain for the 8th time (i.e. that we would get an alarm I would no longer be able to bypass and that we would not be able to go any further in the therapy) and explaining a solution I thought would keep Max comfortable, which is to stop the therapy before Max fully drains.  I know this probably  makes no sense to everyone out there but it makes perfect sense to me and after I explained this for 20 minutes to the resident, I believe he thinks it makes sense, too. 

All this is to say that for right now, I am the only one who can be here overnight because we just don't trust anyone here to be able to get Max through dialysis successfully and please don't even get me started on the fact that we are sitting in a children's hospital and yet I don't feel like the nurses nor residents will make the right decisions.  What in the hell??

Yesterday morning they tried to sell me some half-cocked scheme of trying to trick the machine into doing the rest of the therapy by partially tearing down the setup of the machine and then resetting it up with the same materials.  I looked at them, shook my head and then said:  "Listen, don't take this the wrong way but I have only been doing this for a week and a half and you guys clearly don't know what you are doing with this machine, I am not going to start messing with it, trying to get it to do something it is not designed to do.  So, you are going to need to think of some other method."

What I should have said is:  "Look, I've only been doing this for a week and half and yet I clearly know enough to realize what you are trying to do is not only not going to work, but could actually introduce bacteria into the system.  So, please excuse me if I am not willing to take this leap with you."

Once again... what the hell?

A Faculty member I work with came over this evening and dropped off the results of a couple-hour collection around the school of nursing in order to provide us with some money for food while we are here or take out or groceries.  I was overwhelmed at how much money she dropped off and the fact that she said there would probably be more coming, this was just what had come in after the first couple hours.  I was overwhelmed and began to cry. I'm not really good at accepting gifts from people outside of my immediate friendship circle.

But I did it..... and I was grateful.

We're still here

The only thing keeping me from blogging is utter exhaustion.  We're still in the hospital and as of last night had heard we would be watching the superbowl in here, which fills me with the desire to just jump out the window. Sometime soon, perhaps later today, I will blog on the unbelievable situation I keep finding myself in while being held hostage at Doernbecher. 

Truly, I don't feel we are being held hostage.  Max has a serious staph infection and I don't want him leaving until it is under control.  But, uhm... I miss my home, my bed, my life and my sweet, talkative, energetic, precious two year old.  Rowan and Max feel the same.  James looks like he's been through a war.

And I can't keep my eyes open.  Please let me nap...

down the rabbit hole

It is 2:15am and I am awake in a hospital room, while all the men in my life sleep peacefully around me.  I am awake because I just spent over an hour helping the nurses program the dialysis cycler, setting it up and hooking Max up.  I am awake because now that everyone I love most is asleep, I am finally in a state where the full brunt of the day's events are beginning to come flooding back in and I find myself reliving everything over and over again.

Today was, without a doubt, the scariest experience I have ever had with Maximus.  There was a period of time there where I literally feared he was going to die and while I now think I was probably overreacting to a situation with which I was not really familiar, when I tell you what I saw you can judge for yourself.

I had to go up to the office today.  I'm normally in the office by 5am, but with Max's new dialysis regimen, I needed to wait to leave the house until after the dialysis had ended, which was 4:45am.  He was fast asleep and so, instead of waking him, weighing him, taking his BP, cleaning his site and changing the dressing, I just disconnected him from the cycler and went to work.

I checked in with James around 7:15 and Max's weight had been normal and his BP did not seem out of the ordinary to me.

Sometime after 1030am, I got a call from James telling me there was something wrong with Max and neither Sarah nor he could get him calmed down.  He told me Sarah indicated he had been restless beginning at about 9am.  He was making a grunting noise when he breathed and kept trying to go to sleep but could not get comfortable.  At his 10am feeding, he projectile vomited up his formula/water and one of his BP medications.  From that point forward, he was crying and she couldn't calm him.  James was also having difficulty calming him.

I suspected he might have peritonitus, but he was crying so much that my directions to them to press on his belly to see if it caused him pain, were futile.  There was no way to tell.  I had Sarah check the drain bag from last night to see if it looked cloudy, but it did not.  It was clear.  I realized the only way to really tell, would be to hook up a bag and drain some of the fluid, but neither James nor Sarah know how.

I told them I was coming home and I literally threw my things into a bag, turned off the computer without shutting down and rushed out of the building, while consulting with the dialysis nurse on the phone.  She agreed I needed to check the fluid and indicated to me that it can come on quickly and that even though the drain bag was clear this morning, within hours his fluid could already be cloudy.

The whole way home, I prepared myself mentally to do this process I had not yet ever done.  What I did not prepare myself for, what I had no real way of knowing is how he would look when I got home.  And the answer to that is that he looked t.e.r.r.i.b.l.e.

I mean bad.bad.bad.

I had never seen him look like that, but I went to get our notebook and to look at the procedure for obtaining a sample of fluid.  By the time I had reviewed that, got the materials and went back out to where Max was sitting on James' lap, Max looked gray to me.  His lips were pale, his coloring had a grayish tinge to it and he was making these soft grunting noises when he breathed.

"Something's wrong.  Something's really wrong," I said to James and Sarah, "He looks gray to me!"

"I was just noticing that," Sarah said.

"I think I need to take his blood pressure..."

Max was unhappy being touched, but did let me take it and when I saw the reading of 99/77 with a pulse of 153, I started to freak out a bit.  I told James we needed to go into the nursery so I could get a sample of the fluid.  When he moved into the nursery, I looked at Max again and he looked even worse.  It was like with every passing minute he was sliding further and further down a rabbit hole.

At that point I think I started to cry.  I was trying to keep my cool enough to get the sample and James was trying to calm me, but I just kept looking at Max, who seemed worse and worse and worse.  I called the dialysis center and when I told them "Max looks gray to me.  He's grunting when he breathes and his pulse is 153," I just started sobbing and they told me they were sending an ambulance.

I got off the phone and began to cry even harder, while James just seemed to pull within himself.  He was cradling Max and I saw the fear etched in his face.  Max was extremely lethargic...and only mildly responsive.

It was at that point that I had that horrible, gut-wrenching thought that he might die on me.

From that point forward things move quickly in my memory:  The firefighters arriving, followed by the ambulance, the ride to the hospital with James following in the cruiser and Sarah agreeing to stay with Rowan at the house, the new children's ER, lots of people, lots of things being done, the attending ER Doc having the oddest bedside manner I have ever experienced. 

It was like a mixture of wanting to be highly educational while not taking into account that we obviously have lived with a very sick child for two years now.  I am sure we know more about his condition than you do and yet you are explaining to me that there is a protocol for draining fluid and that the dialysis machine leaves a certain amount of fluid in overnight?  I'm like, "Uh hello... who do you think you are talking to here?  Do you think I don't know that the machine leaves fluid in??  Not only do I know, but I'll tell you how much it is and how much is likely to be in there right now..."

Of course I did not say that.  But at one point, every nephrology doctor, resident, and fellow were in the room with us, including Dr. A. and Dr. A. was answering one of my questions when the ER Doc begins trying to interpret Dr. A's statements for me and I glanced at her before looking back at him where I proceeded to say in my mind, "Dude!! I've been working with Dr. A. for over two years now, I understand what she is saying and if I did not I WOULD ASK HER MYSELF."

I feel kind of bad about my frustration with him because I think his manner is probably great if he is dealing with novices when it comes to health issues.  But for us, just give it to me straight.  Don't tell me I am a great mom and very objective and oh, by the way, chronic kidney disease is when the kidneys don't work....come on!

Ah well, I digress... suffice it to say that my original assumption was correct.  Maximus has a raging and I mean RAGING case of peritonitus.  For quite awhile it seemed we would be admitted to Ped's ICU.  But he began showing small signs of improvement after a couple IV infusions and so they decided to admit him to good old 9South.

Oh 9south.... I have such bittersweet memories of you, our home away from home during the first year of Max's life.

It is my understanding that he will remain here until he looks better.  His BP and heartrate are back to 'his' normal and he's been sleeping all evening/night.  A couple times he did wake up and actually began vocalizing his happy baby talking.  So, I truly think he is feeling better...

I wish I felt better.  I wish I didn't look like I've been hit by a mack truck....

But all I care about is that for the moment, Max appears to be stabilized.

it is all for him

For the first time in what seems like ages, I can breathe easier.  I can breathe easier and yet I still feel the adrenaline pumping in my body, pushing me forwards in some futile attempt to catch up on all I was unable to do over the last week and a half.  I want to settle down.  I want to be at rest.  I want my mind to calm and stop racing at the speed of light, but instead, all I can do is sit here and write about how keyed up I am.

I think it must be some weird hold-over effect.  Perhaps like migraine sufferers experience when the migraine comes on after the stress has disapated.

Max's heart is fine.  There has been no damage and his doctor is satisfied.  He was an amazing little boy during the echo, allowing the tech to do whatever needed to be done without fussing or crying.  He laid there, watching A Bug's Life, while alternately jabbering at the tech and me or napping.  His blood pressure was fine, though still somewhat elevated and Dr. A. thinks he looks good, as always.  She also told me she doesn't expect Max's BP to come down to normal pre-transplant, which is a tremendous load off of my mind.

He got labs and while I am still waiting to hear the results of them, I am not worried about what I will hear.  I am simply waiting to find out what meds we will need to change.

Tomorrow is the first week day in over a week and a half that I do not have to go out of the house for anything related to Maximus and his care.  In fact, if I don't feel like leaving the house, I don't have to and there is something so freeing and relaxing in that knowledge.

That is not the say that I don't have just an absolute fuckload of work to do from a professional perspective, because I do.  I am so far behind from last week that I am almost unable to fathom it.  And I still have an unbelievable amount of work to do in terms of our house: cleaning, laundry and the like. 

But these things are all manageable.  These things are all peanuts in comparison to the stress and worry, which has plagued me increasingly over the last couple months.  Although I was dreading the dialysis, fearing the dialysis, I have to admit there is a certain comfort in knowing he is now on it.  I know that sounds crazy.  But, we were always so focused on his labs because they were this indicator of how quickly or even if he would ever need dialysis and now that he is on it, there's no longer a need to stress so much on what his labs look like.

He's on it and it is hopefully helping to preserve the kidney function he still has.  He is on it and he is doing better and that is really all that counts.  That is really all I care about.  Truly.  I don't care what I have to do for him.  I don't care how much time it takes or what it means I can't do.  I just want him to be ok.  I want him to feel good, feel better.

I could care less what it means to me or even what it means to Moose.  This is all for him and luckily we both feel exactly the same way....

are the everyday tasks worthy of praise...?

If you all knew what I have gone through this morning just to be able to blog, you would award me with a gold-embossed certificate in tenacity.  I've seriously been fucking around with our network since I woke up this morning at 430am.  But you see, I woke up at 1am with a burning thought in my mind and when I went to blog about it because sleep was elusive, our network was down. I briefly thought about trying to fix it last night.

In the end, I decided the thought was something that could wait until morning.  I'm glad I made that decision.  Otherwise, I'd have lost a good hours + of sleep and in the faerie manse, it sounds fine at 1am but feels like crap by 2pm the next day.

Unfortunately, after all the monkeying around I've done just to have a connection to the internet this morning, that burning thought I had, that clever thing I was going to blog about has completely escaped me.  It has disappeared into the nether regions of my mind and will probably reappear at the most inopportune time, a time when I will once again be unable to post, because that's how my  creativity is these days: fleeting at best, never there when you truly need it and always appearing when there is not a damn thing you can do about it.

I tell you, the untold casualties, the unsung heroes in the dialysis saga are truly my hands.  Noone mentioned to me I would be washing my hands so much and with such truly harsh soaps that by the end of the first day of training, they would be red, dry, cracked and literally burning.  At a week in, I'm seriously ready to just cut them off.  What in the hell?  The entire healthcare industry can't be feeling like this.  Isn't there some antibacterial soap out there that doesn't dry out your hands to the point where they just open up and bleed at will??

Any antibacterial soap that tells you it has moisturizers in it and vitamin E is truly just bullshitting you.  They could very well have it, but the amount of active agents in the soap seems to overpower anything that might actually 'heal' you.  And when you get to the waterless soaps, which we have to use, too:  you can just forget it.  The 60%+ alcohol-base pretty much decimates anything else.  Plus, it feels really pleasant on the numerous aforementioned cracks.

As I sit there and wash my hands for the 50th time, I have to tell myself over and over again: this is for Max, this is for Max, this is for Max.

I destroy my hands for Max.  I kill myself for Max.

A friend of ours wrote something so simple and sweet to me yesterday on Facebook that it made me cry and left me thinking about it for the remainder of the day.  He said: 

You and moose are heroic in caring for Max. I just read the latest blog and I look forward to hearing about a perfect match soon.

I don't think anyone has ever said that to us in that way and it really struck me.  I think it was simply the acknowledgement of what we do for Max every day, which we take for granted because he's our son and we adore him and we will do whatever he needs to make it in this life.  But to have someone else call it 'heroic', it really just struck me and made me extremely emotional.  All I could respond with was something like... Wow... thank you and something else.  I don't know.  I was speechless.

It's not like I need the praise in order to do what I do.  But I have to admit, it did feel really nice to read that and I guess we all need a little praise at times.  I just have a hard time looking at something I am supposed to be doing anyway as being praiseworthy, if that makes sense.

Are the everyday tasks worthy of praise?

dissapating stress...

It's 1230am on a Friday night and all I can seriously think is, "why am I awake anyway?"

The answer is that the Maximoose has been unbelievably fussy all night long so far and everytime he wakes and cries, Rowan wakes and cries and Rowan is an automatic pick-up-and-hold-and-rock every single time.

I was directed to start trying to fluid restrict Max and while I thought this was going relatively well during the day, it has proved next to impossible now that he is asleep.  I don't want to bore everyone with the minutea of dialysis.  So, suffice it to say that due to various factors, I am mildly worried he might be getting dehydrated due to the amount he is waking and crying and drinking when he awakens vs. the amount of fluid draining off at each exchange.

This worry has me awake and unable to sleep.

The good news is that as of 1130am this morning, I was offically done with training with a gold-embossed certificate to prove it and my stress level took an IMMEDIATE nose-dive.  I can't tell you how amazing it was to come home and realize I had the afternoon somewhat at my leisure to do things I needed.

Though, Sarah called in sick which put a huge wrinkle in our days and Moose had an unbelievably stressful work day.

We still have our fucked up fridge as a huge issue we couldn't take care of today and hence, tomorrow looks unbelievably busy.  I want to go out and look for a fridge like I seriously want to shoot myself in the head and after the household upgrades of late, I'm wondering from which orifice I'm going to pull the money for that.

It's been like 8 years since I've had to buy a fridge and I honestly had no memory of how damn expensive they are!  Well, I mean... how expensive they are for the type I would like to get.  Plus, I'm a bit stressed that we might buy one and then still have to wait days for the damn thing to be delivered.  Doesn't anyone have same day delivery anymore??

I'd like to thank everyone for bearing with my craziness of late.  I read back over my posts and realize that I have been blogging about stress and breaking down for what seems like for-fucking-ever, now.

But dude.  I was stressed.  And I know this because in addition to the med dosages I fucked up yesterday, I also left the cruiser completely unlocked and found it that way this morning.  I left my blackberry in the cruiser when I took Max into the training this morning and when I realized it about 30 minutes in and went out to get it, I found I had actually left the tailgate and window WIDE open on the cruiser after I got out the stroller.  I NEVER DO THAT TYPE OF SHIT.  Then I lost the keys once I got home from training and had to look around for 20 minutes before I found them later in the day.

What the hell?

I'm sincerely hoping things begin to settle a bit in the faerie house.  Though, I have to take Max for an echocardiogram on Monday and I am mildly worried about the results of that.  Please don't let us have a heart issue to deal with on top of everything else.

Please.

things would be golden

Words cannot express how done I am with the dialysis training.  I mean done with a big, fucking capital D.  I broke down several times today.  And when I say I broke down, what I really mean is that I screamed at the top of my lungs for a full five minutes about the stress I am under.  I'm talking ranting, raving, lunatic woman here.  Unfortunately, this was not done in a vaccum, either.  It was done to my beloved husband, after which I broke down sobbing with guilt over the fact I had just torn open his jugular, ripped out his heart and then stomped all over it.

I have been going non-stop since Monday.  I've been unable to take care of things I normally take care of because I am either preparing to get out the door to training, or at training, or on my way home from training, or taking Max up to the hospital TWICE for labs and BP checks, or setting up his dialysis cycler, or cleaning his catheter dressing, or priming his enteral pump, or getting his meds together for a full day, or tearing down the cycler.  Once I get home and do all the dialysis stuff, plus put Ro to bed and make bottles for him, I feel like I can barely breathe, let alone do much else.

Oh, obviously I make time to blog my frustrations out, but I literally think it is the one thing allowing me to keep my sanity right now.  I don't really ever remember this level of stress with Max, save for the good old NICU days.

I imagine transplant will, no doubt, be much worse.  So, I suppose I should suck it up and learn to deal, right?

I met with the social worker today, one of my final meetings I needed to have from a training perspective.  She said something like, "So, are you feeling stressed about this?"

I just looked at her and said, "I am extraordinarily stressed.  I am unbelievably stressed.  But it is no longer about the dialysis itself.  It is more about this entire week and how I have been going constantly for this, plus trying to work in the evening and trying to still take care of some semblance of my household.  I think I'll be better on Saturday.  Talk to me then and we'll see."

She smiled and said, "I'm going to save you the lecture on self-care that I normally give patients because I know as a mom, once you have kids their needs always supercede your own."

Amen Sister.  Thanks for sparing me.  I appreciate it and I do not say that sarcastically, though it sounds that way, doesn't it?

The rest of the reasons why I broke down had to do with stupid mistakes I was making all day long.  I fucked up Max's dosage on meds TWICE.  I never do that shit.  I FORGOT to pick up a prescription for him that I had moved heaven and hell to have filled for today.

Oh and our fridge/freezer is going out RIGHT NOW.  I mean, as we speak or as I write.  I reached in  the freezer and was repulsed by the fact that I touched thawed chicken when it should have been rock solid chicken.

So, there you go.  Things are falling apart, but I am catching on with the dialysis.  Now, if I only  had time to think about buying a new fridge, things would be golden...

memememe baby

My life, my consciousness has been taken over by terms like "ultrafiltration value", "initial drain value", "low-recirculation cassettes", "ultrabags" and by a machine the size and shape of an old dot-matrix printer.  I brought the cycler last night and put Max on his first full 12-hour round of dialysis.

All.on.my.own.

I had no issues.  There were no alarms.  It ran completely smoothly.  This morning his BP was down.  This afternoon, it was back up again.  This time, we decided it was almost definitely a result of fluid retention and so I had to alter the setup a little bit tonight.

I spent all morning and afternoon in training again today.  I really had thought once they let me bring the cycler home, they would realize I am just the most intelligent person to walk in there and they would allow me to cut short the training.  We all thought they were saying it would take a week because they were playing to the lowest common denominator.

My snobbishness is ridiculous and I am only kidding about being the most intelligent person.  I am not kidding that I did think I would be done by today.  I am also not kidding that we had surmised I would be done early due to the lowest denominator.

Today, as I was sitting there learning how to do manual exchanges (in case there is no power.  Yikes.  You mean I have to do dialysis manually if there's no power?  Where's the battery power on this baby?) and how to inject medication into the bags, should Maximus develop peritonitus (a serious, extraordinarily painful infection of the peritonuem), I realized there is still a hell of a lot I don't know and the training is nice to have. 

The chance of him developing peritonitus at some point during dialysis is probably ohh... above 80%, so much so that they send us home with an emergency kit of antibiotics to start treating immediately without having a prescription.

So Maximus care took like 10,000 steps forward in the complication factor and I realize every day how you could really really fuck something up if you weren't paying attention.  This isn't like accidentally giving him too much food for a feeding or too little.  This is like... the settings are wrong on the machine and you've dehydrated him or you've overfilled his little cavity to where you injure him or you don't use proper asceptic sterile techniques and you've introduced icky bacteria into a cavity with very little natural defenses to take care of it.

So yeah.  The responsibility is intense.  Oh and I am, as yet, the only one in the family trained to do this in any way.  Once Max is on the cycler at 5pm, I'm chained to the house until he comes back off again at 5am the next morning, or until Moose learns the machine or until Sarah learns the machine, both of whom need to observe me for a period of time and then go up and take quizzes before they can care for Max.

I am proud of myself, though.  I have picked this stuff up and somehow I am not nervous when I am setting the whole thing up and putting it on.  I feel confident, though cautious about it.

My baby Ro Ro, my mama's boy has been missing me terribly and vice versa.  This is the most I have been away from him since he was born.  Well, this is the longest consecutive number of days I have really not cared for him in any way shape or form and it breaks my heart.  He cries when I call and he hears my voice.  He cries when I enter the room and leave it without picking him up. 

Though, when Max also enters the room at the same time, Rowan will divert his attention from me to his beloved big brother.  Even I do not compare to the Maximus in Rowan's eyes.  He adores Max.

Max mostly seems oblivious to whether or not Ro is in a room, but then again, he's a toddler.  What can you expect?  His entire world is "me, me, me, me me me me memememememe," which he has decided applies to everything he is trying to say.  That and "baby".

"mememe baby."  "memememememe baby."  oh and a plaintive, "I goooooo... I gooooo"

please, please

I have hit the wall.  I have officially hit the wall and instead of my stress building to a breaking point whereupon I breakdown and then feel better, I am now at this level of stress where the smallest thing can push me into that state.  A wine glass breaking, a misspoken word from someone who cares, my child throwing a very toddleresque temper tantrum:  any of these things can and have caused me to breakdown and sob over the last 36 hours or so.

Max's labs came back elevated yesterday and the decision was made to begin dialysis today.  I had a feeling last week this was going to happen.  On Tuesday, I had a long conversation with C., asking her if there was any possibility I was going to find out on Friday that I needed to plan for dialysis on Monday.  She said "No" at that point.

Of course we all know now that I heard instead we would begin next Monday, which was still ok for my capricorn I-need-to-plan-everything-out-so-I-feel-comfortable self.  But getting the news yesterday afternoon that I needed to scramble around to make it to dialysis this morning, sent me over the proverbial edge.

Since then, I've been a bit of a basket case and it truly pains me to have to admit that.  In a phrase, it sucks to realize I am not superwoman.  I like to pretend that I am.  I like to feel strong and confident and able to handle what life throws at me, but I guess I am human and I am a mother, at that.  And having to adjust to this thing I have been dreading for two fucking years in the space of hours was a bit overwheming to me.

But all in all, it wasn't that bad.  It truly wasn't.  By the end of the day, I was overwhelmed with information but I honestly do not feel it is outside of my realm of competence.  I do think I can handle this.  I think we can handle it.  Mostly, I was overwhelmed by logistics.

My biggest source of worry upon returning home today was simply where the fuck we were going to set this machine up.  It was all logistics because there are some very exacting specifications:  it must set on a surface no more than 6 inches above or below his crib mattress and must plug directly into an outlet (read no extension cords, not even surge protectors).

The problem with this is that there is no current piece of furniture in the room that is less than 10 inches above Max's crib and there is no outlet near Max's crib.  There is also no room in the room and no place to move furniture out of the room to make space for another piece.

However, after strategizing with Moose for a period of time, I think I know how we can do it without having to purchase another piece of furniture and I feel immeasurably better.

The other source of worry for me is simply my son.  I try not to focus as I am going through all this training with him that this is because he is getting worse.  Instead, I try to think how lucky he is, how lucky we all are that we were not having to go through this in the NICU.  He is an amazing little boy and he hung in there for far longer than they ever expected him to. 

I also try to put the energy out there that this will not be for long.  I try to tell the universe that Max needs his donor to match completely.  He really needs this.

Please, please don't let him have to deal with this for very long.

roller coasters, kicking into overdrive

"I want to have control...

I want a perfect body...

I want a perfect soul..."

I am on a roller coast ride I can't seem to get off of and all I feel I am truly capable of doing right now is simply breathing.  In the space of three hours time today, I went from seeing Max's blood pressure even higher than it was on Tuesday, to hearing we were admitting him to the hospital and making arrangements with James and Sarah to accomodate the admittance, to hearing my cousin's husband is compatible with Max and the process continues, to hearing we were not admitting him and receiving a long list of instructions on what to do over the weekend and appointments to attend next week, to learning Max needs to begin dialysis in the next two weeks.

I took Max and Rowan up the hill.  I brought Max and Rowan down the hill.  I spent hours on the phone for work and coordinating Max's care, Max's new medications, Max's dialysis.  I went back up the hill to pick up Max's medications which needed to be literally made in the pharmacy.  I came home.  I sat down.

And now I am blogging in an attempt to sort out my thoughts, my feelings and emotions, my stress, my fears, the insanity that has been my day so far and it is only 3:30pm.

I took my Radiohead greatest hits along with me for my second trip up the hill because somehow, it seemed like a Radiohead day and in fact, I can tell you now, it is a perfect soundtrack to my world right now.  When "Creep" came on, I turned the volume way up and sang at the top of my lungs, even though it is probably my least-favorite Radiohead song and the one song I find most-UN-Radiohead and yet it fit my mood perfectly.

All I can say is that I have to thank god for the little, or not so little things and trash the rest.  Thank god our donor is a match so far.  Thank god we are, as yet, not spending the holiday weekend in the hospital AGAIN.

Thank god I have some breathing room because life is about to get unbelievably complicated.  Our insane lives are about to kick into overdrive, baby and I sincerely hope I am up to the challenge.