Posts Tagged ‘lungs’

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.




G is in her new digs. She got moved from one unit to another because of hospital renovations. The new isolation unit is much bigger and nicer. Even has a couch for parents to chill on!

She’s still on CPAP. They put her on a nose mask instead of the traditional prongsy-thing because the regular doodad (I wish I knew the name for it) wasn’t staying on her little snub nose and maintaining pressures like it should.

The new nose-mask makes her look like a little piggie.

She’s due to get her 2 month immunizations next week, so they gave me the stuff to look over. I think I’m going to request we space them out. Give her like a week in between each one. G has proven she’s super sensitive to things, so why risk a reaction by giving her a bunch of vaccines at once.

I asked when they last did an x-ray, and the nurse wasn’t sure, so she pulled it up and I read over her shoulder. We both got a shock when we read at the bottom of the report “Persistant Cardiomegaly.”

…Uh, excuse me? They’ve never mentioned that before. So we proceeded to go back through her x-rays. Not one place has cardiomegaly mentioned. We know G has a potential ASD, but that’s it.

So needless to say the nurse will be bringing this up with the doctor. Not that we think G’s heart is enlarged, but that’s not a nice thing to have in the reports if its not true.

Her CO2 level is back up to 74 BUT her PH level is fine, so they’re not too concerned about acidosis.

The x-ray did show minimal improvement on her lungs, by the way. I’ll take that over no improvement, or worsening, any day!

Brief post for now.

G is back on CPAP.

They had to keep going up on her oxygen and she sounded pretty rough, so they ordered an x-ray. X-ray revealed that her lungs were showing further collapse, and it was also obviously that she was very congested up top. So, she’s back on CPAP.

At least its not the vent, right?

At least they still think she should improve after she fights off the Rhinovirus, right?

She was almost completely unresponsive today, until we touched her and got her good and ticked off. Normally she just looks like she was sleeping. I think going back on the CPAP was a good thing – something she needed – because she looked almost lifeless. Her little lips were so pale.

She still has no voice from the ventilator.

Getting hard to maintain any sort of positive outlook.

On a semi-amusing note… My coworker had apparently sworn to herself mentally that she was not going to call G by her middle name. (What G is shortened for.) She was going to call her by her first name. She walks in, over to the crib, and the first thing she says is.. “Hi, G.”  Bwuahahaha! G’s full middle name is basically her official name in the NICU. No one even bothers trying to call her by her first name anymore. I win I win I win I win! Haha!

I knew that name would stick! I knew it!

Last night I was venting my frustrations to K about G’s illness and my general distaste of pumping. I said “I wish I just felt like the breastmilk was actually helping her, you know?”

He had the perfect response. He immediately cracked “It IS helping her. Have you seen her cheeks? She looks like a chipmunk!”

We know she’s retaining water now, but regardless of that she does have some serious chubby cheeks.

Please let one thing go right. Just one thing. Let just one of her problems resolve itself. Just one thing. I just need something to hang on to. Something to work for. Something to hope for.

Because right now hope is circling the drain. Just like I am.