It just keeps building

Posted: November 4, 2013 in Uncategorized

So this Friday, at the urging of the pulmonologist, I took L in to the ER because of her cold.

We were admitted to the pulmonary ward within a couple hours.

So we got to spend the night in the same hospital that G died in. Effin’ awesome! /sigh

They are now treating her as though she has asthma on top of everything else. When we were released it was with 2 more daily meds (a steroid and another asthma medication). 

She has a right heart cath and bronchoscopy on December 18th. That procedure can be risky in kids with PH.

One thing after another. It just. keeps. coming. 

The tears have started up again. I’m dreading the holidays. Bad enough that we should have been celebrating with an infant in the house, now all we’ll have during the holidays is her ashes, but on top of that, not knowing what all is going on with L.

She takes Tracleer, Lasix, Miralax, Albuterol, Atrovent, and Flovent every day now. That is a crapload for a kid to be on.

She also is on 1 litre of oxygen with exercise, and currently using it at night because of this cold.

Everythings spinning so hard I can’t see any good any more.


L and Emotion

Posted: October 2, 2013 in Uncategorized

So in the previous post I talked about L’s appointment with Pulmonary and PH. How her tests came back fine, but I still thought something was wrong.

Well, here’s the deal. So Dr R (The pulmonologist) listened to me, and ordered a continous o2 monitoring on Lily. Not just at night. He listened to me and understood she’s having these spells when she’s active.

So we got the monitor. We put it on her periodically over a couple days. 

Yesterday, Dr. R called me. He said that L maintains at about 97 percent normally (which is great!) but… BUT she IS having sat drops. Sometimes into the high 70s! They’re generally brief, lasting anywhere from 10 seconds to 2.5 minutes, but they are there!

I felt like jumping into air and yelling “YES! YES! I FREAKING KNEW IT!” at the same time as I felt like sitting down and burying myself in a bottle of liquor because… You probably guessed this was coming … L is back on O2. As of yesterday evening.

But at least now that we have verified sat drops, there is an urgency to getting in and taking a look at her insides.

I think about George every day. And for the most part now, I don’t really feel much. I can still start crying at the drop of the dime, but its rare. I cry about once per week, and it always comes out of nowhere it seems like.

The other times… well, I thought I was adjusting and all that, but I realized that’s not it. Its that the only thing I really FEEL anymore is anger.

I’m not angry at George. I’m not angry at the Doctors. I’m angry with myself. For lots of reasons that don’t need put into words, but that anger is spilling over into everything.  I’m either quietly stewing, or cursing and wanting to punch things. I’m frustrated or indignant. There is so much rage in every part of me that I don’t know how to handle.

And you know what really freaking gets me? That I’m expected to be considerate of other people’s feelings. That I need to ‘give them time’. Why the HELL do they need time? Their kid is not the one who died. MINE IS. MINE IS!!! and yet ‘people tried to help you, but you pushed them away’.

BULLCRAP! Trying to refriend me on facebook without even bothering to send a message is NOT trying to help me. Its wanting to get in on the drama. 

I’m not that effing stupid! 

Saying “I’m sorry” to me doesn’t do anything but make THEM feel better. And they don’t like that I KNOW that. 

I am NOT touchy-feely. I am NOT some super emotional bag of sobs. I EXPECTED better of people, and I was sorely disappointed by the fact that beyond that first couple weeks, no one except for like 3 people have even TRIED to be my friend when I needed them. When I damn well would have tried my best to be there for them!

SO, you know what? Screw all of you. Go take a flying leap! 

Read this post and whine and gripe about how ‘you’ve tried to help me’.  Riiiiiiiiiiiiiiight. Keep telling yourself that. You people who can’t even be bothered to say hi to me unless I reach out first. Keep. Telling. Yourselves. That.

Whatever makes you feel better.

I’ve learned my lesson. Finally learned it. That people only care as long as its convenient for them. Because the people who SHOULD have known me, who know my first reaction is to back away, who know how desperately I need them even if its hard for me to actually ask for help? The ones I counted as my closest friends? The people I thought would help me fight myself? Yeah. Right. Its not convenient to be a friend to someone who is suffering. But yet they can get offended by honesty. HAH!

Because its too flipping hard to just say ‘hi. Thinking of you.”. or send a funny joke or somethign like that. God knows thats too freaking hard!

Hopefully someone will have their backs when their world comes crashing down around them. It certainly won’t be me.

On a lighter note: There’s a very few of you who know this doesn’t apply to you. And to everyone who sent cookies and chocolate early on – Thank you, again. Chocolate makes a girl happier.

I’ve been holding off on actually doing a detailed post until I got a couple appointments out of the way.

So here goes…

L had a Pulmonary appointment and Pulmonary Hypertension Specialist appointment on the same day.


Pulmonary listened to her, and agreed something was wrong, but they thought her PH was getting worse. They shuffled us off to the PH specialist, but told us that we were to start giving her an inhaler before activity, as opposed to just giving it to her when she had a cold and we needed to do chest percussions.

We’re also supposed to keep monitoring her and the plan is to do a pulse-ox overnight test. 

He also had us sign a consent, saying “If the (PH) specialist wants to do a right-heart cath (which is the gold standard for getting a real read of pressures – echoes are just an estimate), that they would go ahead and do a bronchoscopy with bronchial lavage at the same time.” The bronchial lavage would be a salt water rinse of the lungs if they saw evidence of thick mucous.


The PH specialist did an echo, and said that the pressures in her heart looked great, and therefore he did not believe it was her PH getting worse. That, instead, it was her lungs. So he’s pushing it back onto Pulmonary, although he does agree with the inhaler before activity, Pulse-ox monitoring, etc.

He also said “If the (Pulmonary) specialist wants to do a bronchoscopy, we’ll go ahead and do a right-heart cath at the same time.” So do you see an issue there? Both of them want to do something, but don’t want to do it unless the other is going to do it. sigh

She had her first six-minute walk, and did fantastic on it. They don’t like to do them in kids younger than six, because of their ability to stay focused and such, but L did it with no problem whatsoever. I stood at one end of the hall, K at the other, and she got a kiss and a swift hug every time she reached one of us. She did 1100 in distance, and her sats stayed in a good range.

That’s another reason why the PH doctor thinks its pulmonary. He says if it was her PH, it would be affecting her all the time – not just sporadically. 

I wanted to yell at him at this point, because I felt at first like he wasn’t acknowledging something was going on, when its obvious that something is.  But he is acknowledging that something’s up, just that ‘objective evidence says its not her PH’.


So now its wait, see, monitor, record, and poke both specialists frequently until we get some answers.

I understand why they don’t want to put her under. I do. Because each time she gets put under, her risks of complications from the anesthesia increase. The chances of her needing supplemental oxygen for a bit afterwards (because of the lavage) is higher.

But I still feel that we need to do it. We need to find out what is going on, specifically. Because something is

Also, the PH specialist does think we should have L tested for the FLNA mutation, as the genetics doctor had recommended, because it could ‘change the course of treatment’. He, however, did not say  HOW it would change things.


So I called Genetics, and asked them to submit the order for the FLNA and POL-G testing for L to the outpatient lab, so that next time L went for her monthly finger poke, we could just get it done at the same time. No extra trips for blood draws. No more pokes than necessary.

“Oh, well, we have to consult with the doctor to make sure its okay.” ARE YOU FREAKING KIDDING ME? THEY are the ones, in their letter to me about G’s condition, had said that they wanted to get L tested. They are the ones that said they feel strongly that L does have x-linked periventricular nodular heterotopia. They’re the ones that said contact us to get things set up. They met with us a couple times over G. They have all the family history they could possibly need. We know all they need to do is this blood test.

So how freaking hard is it to just order. the. damn. test?!


Anyways, so I gave L 2 puffs on her inhaler this morning. Then I took her to the babysitter’s house. I took the inhaler and the sat monitor over there. L has a meltdown. Complete and utter end of the world, how dare you leave me at the babysitter’s house, meltdown. Complete with purple lips. So I took her pulse ox.. 91! After a few minutes it got to 93, and that was it.

If we still had oxygen around, 93 would mean her tank was being turned on.

I am so, so freaking frustrated and irritated right now.

I’m not ready to start this fight again.

But… I will.


Look at your child, and tell your child that you can make any one physical wish happen for them (within reason). 

They want to go to Disneyworld? Done.

A ride in a helicopter? Done.

Meet Dora the Explorer? Done.

Watch the excitement fill their eyes.

Now, tell them that they can have that one special wish, that people have made it possible, because they have a terminal illness.

Inform them, in the nicest way possible, that the world has shown its generosity to them because they are expected to Not Grow Up. 

Watch their reactions. Watch them struggle to understand what you are saying. Watch them begin to comprehend that they are different. That something is Wrong.

Do this (In your head), and you will perhaps begin to have a taste of what parents of children with terminal illnesses go through.

Before George died (BGD) and After George died (AGD) are two separate pieces of my life, and try as I might, I can’t make the two meet.

This has led to me having a great deal of bitterness towards a great many things (and people). It has also made it very easy to overlook some of the good deeds that people did for me BGD. 

My grief has also made it impossible to see other’s grief. Though I think that in part that is because I still don’t understand how someone can grieve for someone that they barely knew. One of those things that sometimes I think I understand, but then as quickly as the very next day, I don’t get.

Anyways, back on track… This rage and grief though are a dangerous mix that, for the most part, I manage to keep contained. But when it spills over, it makes a fantastically horrible mess.

I hurt a dear friend of mine when that rage and grief spilled over. I know I shouldn’t have. But I could not stop it. It wasn’t even that much of it was directed at her, but enough of it was that it hurt her, and I can only imagine that it was hard to separate the small kernels from the whole overload that I unleashed.

I can’t regret everything that I said, because most of it needed to come out. A boil that needed lanced, if you will. It just didn’t need to be unloaded on to her. I should have written it out, or talked to one of my friends who knew how to handle the darkness in me right now. I was bawling as we talked, and had made up my mind to completely withdraw from basically everyone besides one or two people because of that rage and grief.

Because, like I’ve stated here before, most of the (few) people that I thought would stand for me when I could not stand, could hold me up when I was ready to collapse… they did not perform as I needed them to. They backed away.

Having time to think about it, I do see the points that she was trying to make. That it is hard to know how to approach someone who is grieving. It is hard to find the words to say.  And I knew. I KNEW how people were going to react. 

I would be lying to say that I’m not angry about how things played out with various people. But I would be lying if I said that it was the primary reason that I was angry. My anger comes from the fact that my daughter is dead. Everything else that I’m angry about is an offshoot of that.

I honestly do not hold much personally directed anger at ANYONE for their actions/reactions AGD. It is more of a broadly cast net than anything.

She tried her best to be a good friend to me, but I just don’t have the ability to see anything more than my pain right now. I cannot give/return, emotionally, when I have no good emotions in me.

I wish I knew when that was going to change.



Best. Pic. Ever

I’m still going to clean it up a bit in photoshop, but….best pic ever. EV-ER. Haha. Can you tell I’m in love with it?

Image  —  Posted: August 26, 2013 in Uncategorized
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Summer Fun Pic Dump

Posted: August 26, 2013 in Uncategorized
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Went to the grandparents this weekend…

Some of these I’ll post on my photography site, but for the most part they’re just snapshots.