Monday, May 6, 2013

Another Heart Check

Started on the 17th of April:

Brent was gone for the first half of last week. Sometimes, his rotation of visits just happens that way. We've gotten used to the ebb and flow of his job for the most part. 2 years of settling in will allow such. But the 2 night trips are still a bit disorienting. By the time Brent gets in the door on the eve of day 3, he is all but attacked by 3 kids and a mommy - eager for some wrestling and rough housing, eager for some adult conversation, just eager for the wind of change he brings along from his Louisiana travels.

In short, we love our Brent. We love our time together, and we miss him while he's off working.

Keeping up with the house and kids can be a bit of a bear if I allow it (to become so). I've learned over time to tend to what I can: laundry, dishes, keeping kids, plants, pets alive and well...and let go of what slips rather than attempting to grasp at it with flailing arms and screaming bumpkins as it inevitably falls onto the "I wish I could have done that this week" list. Ultimately, I keep things going, and plan a frantic hour or 2 of catch up to take place when Brent returns and the kids are enthralled with the new feel of their old daddy - ha.

Tuesday, Brent and I had our evening phone catch up after the big kids drifted off to sleep and Everett was passing out after a marathon nursing filled afternoon (yes, 1 year olds still nurse like 11 months olds by the way - in case you were sitting in utter shock over that last bit).

Brent passively asked, "so, you're going to the cardiologist in the morning?"

"Umm. I wasn't planning on it," I answered, wide awake after feeling half asleep for quite some time. I wracked my brain for a missed appointment...nope.

"Well, they called me and said Mary Louise has a check up in the morning...but I assumed they called you too so I didn't worry too much about it."

A little irritated, "no, they didn't call me. What time is the appointment?"

"I'll check and call you back..."

A few minutes later, "I can't find the message - it was at 9 or something. I don't know why they didn't call until they reached someone."

*Sigh* - "They DID call until they reached someone: YOUR voice mail. They left a message. I'll take care of it. Should be jolly fun to take all 3 of them in again...after the amazing sleep they've been having this evening." (The big kids woke Everett 3 times in about as many hours by screaming. David INSISTED there was a penguin...yes...penguin with teeth "grunting" at him in his room. He therefore NEEDED to sleep with me...and repeatedly kick me, and Everett in his sleep. Mary Louise just screamed, climbed into bed, and whined about David kicking her as well. Good times.)

This is home sometimes. Though it may not always seem like it, I love the familiarity of these discussions and laugh about them in hind sight. The dry comedy routine that is me and Brent sifting through the "importants" and the "meh's", while still getting to know one another after almost a decade of marriage is beautifully hilarious.

I woke, wildly groggy at 6 am. David was staring at me, sitting straight up in bed, "I tee tee'd."

I closed my eyes again, "you sure did," I answered. "Guess I'm washing sheets again today...go back to sleep. It's too early."

Think this is off? Yeah - it is. I am 1 of 5 kids and have 3 kids within 3 years of one another. Sometimes, there are worse things than urine soaked getting 2 more kids up with a bed change about 30 minutes before they'd wake naturally. That'll guarantee a ruined day before tiny feet even hit the floor.

About 30 minutes later, I had an assembly line going through our shower - one kid in, towel, "go wait by your clothes!" Mommy in, towel, clothes on, finish up with the kids. We were all cleaned, dressed and had sheets in the wash by 8am. Good. I started calling the cardiologist to see what time Mary Louise's appointment was scheduled.

They forgot to turn over their phones until 8:40. I made good friends with the answering service (sweet woman - bless her heart - she was more irritated with the office than I), and finally got in touch with the front desk to find out our appointment was at 9.

We rushed over. They were already quite busy - but we made it just in time to get called back.

Mary Louise behaved well through the preliminary testing. Admittedly, I threatened a "not very fun day of sitting and napping quietly" if anyone acted out in the office. (I thought I had it in the bag to be honest!)

Everything was ok but her oxygen saturation which bounced between 90 and 95. We went to a room.

The doctor came in, "Hello everyone! How are you?? How's our big girl doing?" Turning to David, "I know you're just here to visit man!"

David beamed.

"Mary Louise has been doing well with everything but her breathing. She just gets very sick easily - can  go from a runny nose to full blown pneumonia within 24 hours," I told him.

He listened, looked concerned, and double checked her history - she had a bit of pulmonary hypertension with her PFO after discharge from the NICU. However, she's been asymptomatic for years...

He did a physical exam and we went into ultrasound. She almost fell asleep.

Back to a room, then back with the doctor to ultrasound. He wanted to double check the results before giving us a full report of findings.

She's doing well. Her coronary artery fistula is completely closed. They checked for leaking / branching of vessels with the highest color saturation possible and found nothing. GREAT news!! Her PFO is closed. Her lung pressure is great (normal range) - this was what he said in the appointment... however, an evening phone call from our pedi confirmed that ML does have minor pulmonary hypertension according to the final report...more on that in a bit though.

Mary Louise has been DISCHARGED from the cardiologist!!!!!!!

This means her asthmatic symptoms, seasonal allergies and respiratory symptoms can be assumed to be a pulmonary issue - uncomplicated by cardiovascular anomalies. (This is all we can ask for at this point.)

Her cardiologist was pleased we had an appointment in place with a pulmo's coming up in a few more weeks. (it was on the 2nd of May)

My goal there is to streamline her care with one doctor focusing on her lungs and go from there. We've dropped dairy almost completely from (all) our diets as it carries with it a mucous producing tendency. Mary Louise and David are on a very good daily multi vitamin, probiotics, elderberry syrup and local honey. My hope is that we can manage her symptoms appropriately with preventative / maintenance medicine, have a strong plan of care in place for when illness does occur (to prevent it from progressing), and really work more on holistic preventative measures.

***sidenote for my reference***
As of his last physical, Everett still had his fetal heart tones. A referral was given for the pedi cardiologist. After a review of his insurance policies, it appeared it would cost us a minimum of $600 for the visit. I spoke to our pedi (she was returning my call when we talked about ML's care) and she agreed that the visit for Everett could be postponed as he's asymptomatic, the heart sounds were very faint and ultimately, a "wait and see" approach was all that could be done - as intervention in his case would mean open heart surgery which is of course reserved for the absolute worst of the worst cases.

So, depending on the exact level of pulmonary hypertension, Mary Louise's breathing could be affected - the pulmonologist was to consult with the cardiologist to discuss her case.

Still with me?


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