Charlotte's Journey Home

Just a Regular Kid, Sort Of


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VQ Scan

Picture this….a machine kind of like an MRI, but a cross-section of one. Basically, a large donut encircling a narrow table. On the table is a little baby, in a white hospital gown, wrapped in a sheet and a towel, strapped to the table with three wide black straps. You’ll have to imagine how calm and peaceful Charlotte was because Mommy forgot the camera (bad Mommy). This is the VQ scan procedure in the Nuclear Medicine department at Children’s.

What is a VQ Scan? From the Harvard Medical School Family Health Guide: “The ventilation-perfusion scan is a nuclear scan so named because it studies both airflow (ventilation) and blood flow (perfusion) in the lungs. The initials V-Q are used in mathematical equations that calculate airflow and blood flow.”

Here’s how it went—we waited for nearly an hour because somehow our appointment never got entered into the computer. Never mind that Nuclear Medicine knew we were coming and the folks were waiting for us—until it was in the computer, the reception area couldn’t call them or send us up. So, this is why Dr. Pophal gave me the orders—reception seems to be notorious for losing orders. I forgot the orders along with the camera. Mom is notorious for being a ditz these days.

Anyway…we finally got escorted to Nuclear Medicine. I left the room while Charlotte was injected with the isotope medicine that allows the doctors to see blood flow through the video x-ray. Since she’s so tiny, they called the NICU IV team to inject her. They had to do it twice because the vein in her left foot collapsed on the first stick.

So, by the time I got back in the room, she was peacefully lying strapped to the table. Not struggling against the restraints at all. Amazing.

For the next 25 minutes or so the big donut machine closed in on Charlotte’s little body and rotated around to get pictures from all angles of her little lungs. I pet Charlotte’s head and talked to her. She actually fell asleep!! Maybe the loud noises from the machine helped or maybe being there at naptime was a good thing.

No results on the spot so we’ll have to wait until the Cardiac Team meets in conference on Monday to learn what’s next.

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Cardiac Catheter Procedure

Hi all,
For those of you who have put our appointments on your calendar, I apologize for not catching you up earlier.

The cardiac catheter procedure was yesterday. We got to the hospital at around 7 a.m. for Charlotte’s bloodwork. As much as I hate having my own blood drawn (total needle-phobe, I am), holding Charlotte for her blood draw was worse. She screamed at the mere idea of being constrained. I actually don’t think the needle bothered her too much because she stopped crying the minute we let her arms and legs go.

We went into the surgical “holding pen” where Dr. Pophal (the cardiac interventionist), Dr. Lahey (the cardiac fellow) and two anesthesiologists walked us through the procedure, risks, etc. Our friend Sam (one of Charlotte’s PICU nurses) got off shift and came to keep us company.
The distraction was welcome–this time we didn’t completely break down when they rolled our sweet girl away.

The procedure took about 4 hours. Charlotte was intubated and put under general anesthesia. Dr. Pophal inserted two catheters and then injected dye so that he could look at her blood flow and pulmonary pressures. To make a long story somewhat shorter, here’s what he found:
–The pressures (TR jets) measured by echocardiogram (bounced sound waves) in August were not as severe when measured directly, but pressure was not ideal either
–The left pulmonary artery measured about 6.5mm and shows now constriction
–The right pulmonary artery (RPA) measured about 4.5mm.
–The RPA also showed a significant restriction at one point, bringing it down to about 2.5mm

Dr. Pophal performed a balloon angioplasty on the RPA to reduce the restriction. Ideally, this should have brought the pressures down immediately, but it did not. On the positive side, the right pulmonary artery and the right lung are at least now receiving the correct amount of blood flow, so hopefully they’ll catch up with the right side.

Charlotte did amazingly well with the anesthesia. They were able to extubate her right away and we sat in the recovery room with her as she shook off the drugs. Charlotte was transferred to the 5th floor for 6 hours of observation. We had another terrific nurse–Julie–who helped us with everything, including (you guessed it) reinserting the NG tube when the little scoundrel pulled it out.

Much to our delight and surprise, Charlotte was released last night and we all slept at home.

Today she’s been lovely, adorable and not happy eating. We’re hoping it’s just left over discomfort from the breathing tube….


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Road Trip–Week 2 : Eating Adventures

Hi all,
So, the plan was to create a gallery of photos of Charlotte’s “guest feeders” as she travelled from Chicago to Richmond VA, to Virginia Beach to NJ. We have not managed to capture all of Charlotte’s pals on camera, so the gallery will follow in the coming days. Moreover, Charlotte has not been eating well, making “guest feeding” a bit difficult.

Charlotte is a real trooper in the car–she only whines when she needs something. She’s easily distracted when I sit in the back with her. She giggles and wiggles a lot at rest stops. But…apparently sitting in a car seat for hours on end can irritate the esophogus. Who knew? Certainly not The Amateurs. Maybe because of this, maybe for other reasons, Charlotte began refusing her bottle a day or two into the trip. I mean, really thrusting it out of her mouth. It took several days and back and forths with our docs, but we finally came to the conclusion that we needed to up the Zantac dose. While it’s taken several more days to kick in, that seems to be working.

In the meantime….the beach was mostly too hot and windy to enjoy with little baby this year. We did have a lovely time on the boardwalk one evening and visiting at home with our pals Eva and Bill. Not the relaxing experience VA Beach usually is due to the feeding struggles.

On we moved to NJ. We arrived last night. By 1:30 a.m., Charlotte had pulled her NG tube out not once, but twice. Needless to say, I was at my wits’ end. Completely. Philippe had to leave at 6:30 a.m. for NYC for work so we decided to see if she’d eat without the tube. No dice. Next to nothing by noon. Mom and I ended up taking Charlotte to the Pediatric Emergency room at Overlook Hospital. I was concerned 1) that her skin was sooooo raw from the tape and that was making her miserable and 2) that she appeared to have lost her appetite over the past week.

I’ll spare you all the details. Suffice to say, “parental anxiety” but supported by physician consult. Baby is just fine. Nurse Patty at Overlook reinserted the tube and gave us a new kind of tape to try. Charlotte has had 2/3 of the each of the last two bottles we’ve given her. And I’m off to see if she’ll take a bit more before the night is through.

Most important part of the trip (saving the best for last)–Charlotte meets her family, her aunts, uncles and cousins. Pictures to come shortly!


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Road Trip!

Writing this from the Hampton Inn in Lexington, VA. We’re just a few hours away from Virginia Beach, where we hope not to meet Hurricane (Tropical Storm) Ophelia. We’ve had a great drive so far. Charlotte handles the car wonderfully. And, as Philippe will note, the car handles wonderfully. I really haven’t felt like we’ve been in the car for hours at a stretch.

Can’t wait to get to VA Beach tomorrow, to stick my feet in the ocean, introduce Charlotte to Auntie Eva and Uncle Bill the rest of the crew (whoever is around), and feel Gomez’s presence.


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Cardiology Interventionist Consult

Hi everyone,
We met on Thursday with Stephen Pophal, the Cariology Interventionist who will be performing Charlotte’s catheter procedure. He was quite adorable with Charlotte and we know she’s in good hands with her. Here’s what he told us:

She’ll go in on the 26th for the procedure. She will be under general anesthesia and will be on a breathing tube. She should be able to return home within 24 hours depending on how she fares with extubation.

As for the procedure: Dr. Pophal will snake a tiny camera through Charlotte’s artery to get a close up look at her heart. He’ll also be able to directly measure her pulmonary pressures, getting a more precise reading than what is generated by ultrasound.

What might he find? Three scenarios (in order of likelihood based on what “usually happens with truncus repairs”*):
–There is stenosis around the stitches where the conduit was inserted during the repair. To correct this Dr. Pophal would then perform a balloon procedure to dilate the area. This would be a straightforward fix that would buy time until Charlotte’s next repair.
–There is a blockage or narrowing further downstream of the conduit, in her pulmonary artery or pulmonary branches. Dr. Pophal can also dilate this with a balloon procedure, however, he says that this kind of stenosis frequently bounces back (rubberband effect), so the fix might not last as long
–There is no blockage, rather, continuing pulmonary pressure. This would have to be dealt with in some other fashion (oxygen, medication….)

We really don’t know what to expect. Frankly, neither of us walked out of the consult with the “warm fuzzies,” though we quite like and trust Dr. Pophal. We’re hoping it’s the first scenario and that a balloon procedure will get Charlotte healthfully to the next repair. For now, we wait until the 26th with a bit of trepidation.

*As my wise mother-in-law notes, given the rarity of TA, there is no “usual” really. Fingers crossed, prayers said.


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Growing!

Today’s report:
10lbs 14oz (yipee!)

24 in. (2 whole feet. wow!)

Reaching for her toys. (Her gal pal Eve took this photo. Thanks, Evie!)

All around adorable.
(Practicing Cobbler’s Pose with Mommy)

We had a great check up at the pediatrician today-Dr. Salem is thrilled with Charlotte’s growth and progress. So are we. We’re still waiting for the state’s “central billing office” to process Charlotte’s paperwork so we can begin PT and OT, but the torticollis appears (to us) to have improved. Dr. Salem said that it looked to her that the flat head has improved as well. Next pediatrician appointment isn’t until 10/5 because 1) Charlotte is doing so well 2) We’ll be out of town for the next 2 weeks and 3) Charlotte will be at Children’s Memorial overnight on 9/26 (at least) for her cath procedure.

Yes, dear PICU RN friends, Charlotte will be at CMH 9/26 overnight. Run, don’t walk, to your nearest schedule request form 🙂 We’re not looking forward to being in the hospital, to general anesthesia, etc., but we are looking forward to seeing our friends and showing off your handiwork, our thriving baby girl.