Archive for the ‘Other Health Stuff’ Category

2 steps back..

Posted: June 6, 2013 in Other Health Stuff, X-Linked PH

George is on Si-pap or Bi-pap..whatever its called.. its the step up from CPAP.

Her CO2 levels were near 90 again.

I’m expecting a call any moment saying she’s going back on life support.

This. Freaking. Sucks.


It was a good day for G. She was quiet and alert for a good bit. So I tried something. When I got a result, I tried it again. And again. And again. And I kept getting the SAME result EVERY time.

So then I called the nurse in. I said “Do you want to see something cool?” She said yes.

So I did it again. And again. And again. And I got the SAME result EVERY time.

Then the physical therapist came in. I said “Do you want to see something cool?” She said yes.

So I did it again. And again. And again. And I got the SAME result EVERY time.

The nurse practically squealed and excitedly stroked G’s hair and cooed over her. The therapists eyes got as big as silver dollars and she just said  “THAT. IS. AWESOME!!”

Wanna know what I did? Bet ya do.

I took this little yellow lion that has chewies for paws (thanks Erica!), and I waved it in front of G’s face. I didn’t touch her with it. I didn’t make any sound as I was doing it. I just waved it slowly in front of her partially open eyes.

And every time I did it, G would open her eyes wide. Every. single. time. I would slowly wave the lion, or bring it in towards her face, and she would open her eyes real wide, like “What IS that?”

I tried it with other toys, and didn’t quite get the same result. One little lady bug toy would get G to open her eyes wider for a second, but that was it. The lion, however, got full on “Oh My God! WTF?!” eyes.

The nurse that saw G’s reaction? She’s the one who has always noted G as ‘unresponsive to environment’. 

The therapist that saw G’s reaction? She’s the one who told my boyfriend she thought that the idea that G could see was probably just wishful thinking.

So, anyways, the therapist starts going through the motions with G… and at one point G arches back, with her head in my direction. I immediately leaned in real close to her…and we stared at each other. For at least 6 seconds. We stared at each other. The therapist just stopped touching her while this was going on. After it was over, she told me “I think she really saw you. At least briefly. She stayed very still in that position longer than she should have if she wasn’t seeing anything.”

And then they continued therapy.

So… there’s that.

We talked about now that G’s doing better, what should we be doing with her? Obviously cuddles are of the utmost importance, but… The way she put it was this “If you’re here for 10 minutes, then spend it all cuddling her. But if you’re here for 15… do 10 minutes of cuddles, 5 minutes of playful interaction.”

By the way, she said G had been pulling one over on her. That when she’d seen her at first it was post G-tube, and then with the Rhinovirus.. G doesn’t flipflop between hypotonic and hypertonic. G is hypotonic. That is her primary muscle problem. Except when she’s angry. Then she’s hypertonic.

G-steps, man!

Just. read. it.

The good news is G is still off the vent.  However, she’s at 4 litres of oxygen, at 60 percent. (Room air is about 21 percent for reference.) The doctor did say this morning that as long as her blood gas (the CO2 level specifically) was good, they would not reintubate her. So, here’s hoping it stays good.

She’s not tolerating weaning down at all. It concerns me. I also noticed on her most recent growth chart that her head circumference had fallen down on the charts. Now that can be explained by different people doing the measuring, but still… If I’m recalling correctly, microcephaly can have an association with PVNH. Microcephaly is generally linked with severe developmental delays and other problems to boot. So, please let the person measuring G’s head simply have been an idiot who can’t do a head circumference correctly.

G is in the 90th percentile for length! A whopping 23.3 inches.  She’s about 40th percentile for weight, coming in at a grand 9 lbs, 12 oz.  She looks chunky!! It kind of doesn’t make sense that she seems to be struggling so hard, but she’s gaining weight like a champ. Then again, they are giving her 80ml (or 2 and 2/3rds of an ounce) every 3 hours. But that does mean a couple things.

1.)    G can’t be too allergic to soy/dairy if she’s gaining weight like this.

2.)    My milk is doing a fantastic job of providing the calories she needs.

3.)    I should have told the doctors who told me I couldn’t breastfeed L to suck it!

She’s still receiving sodium chloride to assist with raising the sodium level in her blood. I don’t know how long that’s going to continue for.

Oh, and she’s taking caffeine. This irritates me. You know why this irritates me? Because I brought up using caffeine on her WEEKS ago, and was told no. That they hardly ever do that. That there’s no way they’d send a baby home on it. Uh… lo and behold, they’ve got her on caffeine, and have already said she’d probably come home on it.

I feel like its another case of “Lets not take the mom seriously. After all, she doesn’t know what she’s talking about. She doesn’t have a medical degree.” As near as I can remember, I have called almost every bloody thing at least a day before they did! The only things I didn’t have a clue about where her co2 and sodium levels, along with the brain malformation.



Anyways, you know what one of the most horrible feelings is? When you’re trying to pump, but you haven’t had time to grab anything to drink, so you know you’re dehydrated.  Then you’re trapped in your daughter’s room, which is in isolation, so its not like you can just jet out to get something to drink. Plus you’re waiting on the doctors to show up for rounds, so it’s a matter of how long you actually have before you have to do a frantic disconnect-and-tuck so you can be at the doorway listening to them. Half the time I get this look like “ didn’t have to be right here. You could have listened from over there..” Yes, I could have, but no, I won’t. My kid. I have a role in her treatment. Flat-out. I wanna know everything, even if its amazingly hard to handle sometimes.

And it is. I wish I could just blindly place faith in the doctors, but I can’t. I won’t. I refuse to be the little sheeple person who sits back and doesn’t even bother to educate herself to prepare for things. When you have an ill child, it is your responsibility to learn everything you can. To participate in any way you can.

You really are your child’s best advocate. You are the only one who really, really knows your child. And maybe its wrong of me, but I’m going to even say that in 95 percent of cases, the mother is the best advocate, because I think we notice more than the fathers do. Now there’s always crappy moms and stuff like that, so it doesn’t always apply, obviously.

Today is not a good day. Today is a ‘I feel like this is hopeless’ day. I honestly wonder if I’m ever going to bring my baby home. And if I do…am I just bringing her home to die? You wouldn’t believe how much that tears me up just to think about it.

Oh… yeah… I’m going to do a separate post about Religion. Its not going to be nice, so if you are a bible-thumper with a righteous indignation fire easily burned under your rear… don’t read it.

So, I had a good friend – H – come up to visit today. She drove clear from Georgia, so it was a pretty special occasion. I think G must have sensed that because…


About ten minutes after we were there, they successfully extubated G! That’s right, ladies and gents, G is off life-support!

She’s on a really high flow of o2 for a little tyke – 3 litres, to be precise – but she is OFF. THE. VENT!

..and, as you can see, she even opened her eyes for a little bit =)

PLUS – on top of that – H confirmed that she did think that G does have at least some hearing and eyesight! I think she does too. I’m not sure how good it is – but there’s gotta be something there! When we were passing the mobile over the crib, her eyes flicked to it, and she tried to turn her head in the direction it was going. When I was talking to H and to G, at certain changes in tone – G’s eyes would open, or she would at least move a bit more. She would also react when her monitors beeped!

Also, because G’s bum is so sensitive that the Huggies diapers are just not cutting it, the NICU said we could cloth diaper! =) =) We’ve got to make a list of instructions, bring in a wetbag,clothies, and one that will never be used for anything but weighing purposes – and they will use them on her! I’m hoping it really helps her bum. Its not broken out yet, but it looks so red and irritated.

So far, today has been freaking…


It feels odd to be writing one. I’m probably jinxing us, but… here goes.

We know why G got so sick, so quick. Why her CO2 levels went through the roof. Why she ended up on a ventilator. She has a nasty case of Rhinovirus. And if you don’t know what that is, let me fill you in…

A cold.

That’s right. A cold. She got that sick from a cold.  Its mindboggling, even though I know babies can get horribly sick from them. I guess I just thought that because G’s lungs weren’t bad like L’s were that we didn’t have to worry that much about things like a cold. I was wrong.

So she’s going to be on the vent a few more days, because she needs the support, but hopefully it won’t be a permanent thing. Thank God.

I also have the ability to take pictures again. You wouldn’t believe how much that fills me with relief. When my camera broke, it really was like losing a piece of me. I depend upon pictures so, so much. To the ones that helped: Thank you. I can’t begin to describe how squishy and shiny I felt yesterday. So I’ll just say it again and hope you know that I’m thinking it a hundred thousand times over. K is cursing the puppy, by the way 😉 and I’ve already made a couple cups of play-doh ice cream.

I also growled and snatched the chocolate from K’s hands as he tried to teasingly give it to L. I think there might even have been a “MINE! MINE CHOCOLATE!” involved, though I’ll deny it if asked outright.

Before we got the news about G having a virus, I almost broke yesterday. I’m not ready to talk about the conversation that I had with the nurse yet (and it does still apply even though we know G has a virus), but I wish that I didn’t pick up on things so easily. I wish I could stop noticing, stop searching, stop asking questions. I never like the answers.

After talking with some other parents of children with PVNH, its possible that things aren’t quite as bad as I’m fearing, but we don’t know yet. We probably won’t know for a while.

After I had the conversation with the nurse, the tears started. I told her that I’d be back tomorrow, that I’d had all I could handle for the day. Then, I walked away. I made it out to my truck, but as soon as I got in, the scream built up in my chest. I pounded on the steering wheel, slammed my head back against the headrest, and – with the only control I had – made sure it was a silent scream, but it was a scream nonetheless.

I was so close to breaking that all I could do was moan helplessly and stare glassy-eyed out the window as I tried to adjust. As I fought back another scream. I think I knew that if I gave in and screamed again that it was over. That I would have not just broken,but that I would have shattered. Normally I only really require a couple minutes to get my emotions under control. Not this time. This time I had tears streaming down my face the entire twenty minute drive home.

At home I finally got things under control, but I still wasn’t in good shape when I went to pick up L from the sitter’s house. It was on the way back when we got the call about the Rhinovirus. Talk about instant relief. … and also feeling really really weird that you’re happy such a little one has a nasty virus.

So I still worry. Lord, do I worry. I don’t want to face my fears. But hopefully – please, please let this go right – I won’t have make any decisions any time soon. Hopefully we can get G back on regular oxygen. Hopefully one of these days we can bring her home.

On a side note: I started writing this post at 4 am in the morning. You know why? Because I woke up needing to pump. You know what the ironic thing about this is? I stopped setting alarms for this time of night/morning because I was never actually getting up. Apparently me and alarms don’t do too well together because as soon as I stopped depending on the alarm, I started waking up. Its at a different time every night, but I am getting up, so I guess that counts for something.

Normally as the pump tugged at her ‘udders’, she’d be glaring at it and thinking how very, very much she hated pumping.  That day, though, she stared out the grimy window of the practically abandoned second story of the building where she worked, and tried her best to mentally come to term with the news that had just been delivered.

As always her brain raced ahead, absorbing information, seeing the possibilities, and showing her the possible paths  that existed. The problem was, especially lately, that all the paths she saw were dark ones. She wondered how she was supposed to prepare for a worst case scenario when all of them seemed so very, very bad.

She didn’t rage, scream, or cry. She just stared out the window as her fingers moved deftly across the keys of her laptop, and stared down the paths that she saw, looking as hard as she could without stepping foot down any of them. She’d felt emotionally numb before, but had never really understood that shock could have a physically numb component to it. She knew it now, though. Her skin felt deadened, and an invisible 100 lb weight rested on her chest.

The woman made it a practice to try to prepare for the worst. That way when it happened, it wasn’t such a shock. There were some things that, it was quickly becoming clear, you just couldn’t really prepare for.

At least her child wasn’t dead.  That offered small comfort.  But she was afraid it was coming. She already had faced the fact that without continued medical intervention, her six week old child would have passed away by now. Now she was terrified that at some point, because of how rapidly things were getting worse, she would be forced to make that decision. The Decision.

The Decision that no parent should ever have to make. Not in a million years.

Not that there was any decision to be made. The choice was obvious. If asked that question, she would let her baby go. Even though it would destroy her inside, she would tell them to pull the plug. Because life attached to life support was not a life at all. Others would probably damn her for it – for daring to make that decision  – but she was used to being alone. Besides, if her child was gone, she wouldn’t care what others thought. She would have done her duty as a mother, which was to keep her child’s best interests in mind.

Tears began to well in her eyes, and she furiously blinked to try to clear them away. She would not cry. She could not cry. That would probably affect milk production, and she needed to pump her usual 3-4 ounces to take to the hospital with the rest of the milk from that day. Her baby needed it. So even though she was in shock, and just wanting to curl up in a corner and bawl her eyes out, she would provide for her baby.

Because that’s what mothers did.

The phone rang, and her gaze snapped to it. When she read the number, she knew it was her boyfriend calling her from the hospital. She already knew what he was going to say.

Things had gotten to the point where her  baby – their baby – had been placed on the ventilator. On life support.

She glanced down at the flanges that were still working to pull the nourishment from her body, and felt a growing anger. She just wished it was done. That it could move faster. But she wouldn’t hurry it because every drop was needed.

She finally glanced at her computer, and saved the document she’d been typing in. She was going to post it to her blog later. It would update everyone. She wondered if any of them would understand that removing herself from the situation was the only way she could write about it.