Specialists Update

Over the past four weeks, Princess and I have made the rounds to her various doctors. We have seen them ALL! So, here's the round up on them:

Dr. K (Cardiology)
We started off by seeing Dr. K, the cardiologist. This was a short half-hour trip down the hill. Surprisingly, for this clinic, he wasn't full. In fact, we got there and were just about right away ushered into a room. We did vitals and Princess went right along with this. And then came the MOST SURPRISING PART: her blood pressure. For the first time EVER we only had to take it ONCE! It was EXACTLY WHERE IT SHOULD BE!

We also did an EKG, which was perfect. I'm glad I warned her so she didn't melt down over the stickers that had to be put on her chest. And then Dr. K scheduled her for an Echo at his OTHER office on the same day we went down to see Dr. D. Granted, it was in the afternoon and Dr. D was in the morning, but I was more than happy to only have this be on our way back from our appointment two hours away!

So the next week on our way back from seeing Dr. D, we had lunch, played at the park and then went over to Dr. K's main office. There we did an Echo and Princess was just so enthralled by the pictures of "her tummy." Dr. K came in after the technician finished and did a few more scans. He said the PFO she had was closed. (I wasn't even aware of her PFO until a few months ago at her MRI, at least not that I remember anyway.)

But sadly, on this visit, we didn't get to do a "one and done" blood pressure. Instead it was right back where it had been running! After attempting it a few more times, and even manually checking her heart rate (because the machine would give us a great blood pressure but the heart rate would be low), Dr. K said that we could do one of two things: switch her two medications around or go to twice a day on one of them. BUT, he wanted Dr. H to make that decision and since we were going to her after the weekend, he was comfortable with whatever she decided. Then came the GREAT news: "Come back in a year." Yay! Annual visits!!!

Dr. D (CP Specialist)
Princess turned three about a week after we saw Dr. K. That same week, we saw Dr. D, the CP specialist at Shriners. We did this in the morning and on the way back home, we saw Dr. K. Now, we had just seen him about two months ago at our therapy clinic, but this is the "official" visit with him to see how things are going.

As it stands right now, no orthotics. He's pleased with her progress. As we continue to move forward, he said that we would be encouraged to do "community based therapy" which is essentially things like dance or gymnastics, non-competitive type things to help with her coordination and movement. It was a relatively quick visit and we were on our way. Come back in 6 months.

Dr. H (Nephrology)
The Monday following Dr. D, we were back in town, this time to see Dr. H, the nephrologist. Another routine appointment, at least for Princess. Vitals including blood pressure, which was high, yet again. Princess did great. The kids colored while we waited. And when Dr. H did "check ups," Princess was cool with it. Talked about if she goes up in medication, Dr. H would want more frequent blood pressure checks, but we weren't going to go up at that point in time. Also was okayed to give Princess Claritin with allergy season upon us. We did blood pressure again at the end, which was better.

Then it was time for labs. sigh This was about what I expected, except poor girl had to get poked twice. The poor phlebotomist felt so bad that she gave her extra stickers and even came out to give her extra giraffe band aids (yes, they had giraffe band aids!). We do have orders to do a urine sample, but we are waiting to do it until we get this nasty diaper rash thing cleared up....so who knows when that will be. But it will be before we see Dr. H again which is in 6 months! Oh, and it's THE SAME DAY we see Dr. D! Hooray! Piggy-backed appointments!

Dr. R (Ophthalmology)
Finally, we saw Dr. R, the ophthalmologist. Surprisingly the waiting room was EMPTY! I guess Dr. R having to open another day due to caseload was a good thing. Princess did GREAT for the first half of it. She wore the special glasses to check her depth perception. And then played a matching game to check her vision. She didn't even cry that much when they put the drops in her eyes! Then we got to sit and watch "Finding Nemo" until it was time for Dr. R to see us.

Well, I take full responsibility for the melt down that ensued with that. Had I let her choose to sit in the chair by herself initially, things might have gone better. But we managed to get through it. And we don't have to come back for another year! I was told we could try artificial tears for the "sand in her eyes" that she complains about. I know it's not real sand, but it could be that her eyes are dry, they're itchy, or it's allergies. We just don't know.

So all in all, everything is going well with the specialists! Two are at annual appointments and two are at twice a year. This definitely makes things easier on us for travelling and such.

Ultrasound Day

Dr. H has been wanting a renal ultrasound on Princess for a while. It's pretty standard. She wants to check for calcium deposits (i.e. kidney stones) since Princess is possibly prone to them. Well, not wanting to subject the poor screaming child to any more issues, I consulted with Dr. K after our last EpicFail! of an appointment with him. He also wanted an echo of Princess's heart. Again, also routine. He's checking to make sure her heart is healing from the damage the hypertension caused. So when I told him about the renal ultrasound, he suggested we come camp at his office and get them both done there! So I let Dr. H know the next time I saw her and came away with orders.

Well, then I had to make the appointment for the ultrasounds! It literally took me 30 minutes to make that appointment! There was some confusion as to whether or not the girl could even schedule the renal ultrasound. Thankfully, Dr. K had already put it in the system. Initially, they didn't want to schedule Princess back to back for the echo and the renal. Apparently, echos "usually" take an hour and renals "usually" take two hours.

THREE HOURS! REALLY?

I mean, okay, most kids who see Dr. K probably need extensive echos every time. I know her first echo took like FOREVER! And honestly, Dr. K would probably do all the echos himself if he could, but I think he actually trusts his own staff. Hospital staff, maybe not so much. Heck, I'm surprised he doesn't have an app for his phone yet! But then saying that a renal ultrasound is going to take two hours is insane! Her kidneys are the size of walnuts! There's NO WAY it could take two hours!

So after half an hour on the phone, I had the ultrasounds scheduled and a follow up visit to Dr. K scheduled for the next week at his local clinic up here. (His office is about an hour away from where we live.) After I hung up the phone, I felt that I needed to check the appointment we had for Dr. H. It was a good thing I did. It turned out I booked ultrasound day on top of our nephrology clinic day! Can't be at two different specialists in two different towns on the same day! So I was able to move that appointment back a week. It turned out that we would do ultrasound day on Monday and then the following Monday go to Dr. H and the next day go to Dr. K. That worked out!

So that brings us to: ULTRASOUND DAY!

We had to set out early enough to get there by nine. I decided to just keep Princess in her jammies because she would be getting "nakey" when she got there, it didn't make sense to change her clothes.

Waffle in the car on the way.

Once we got there, we waited for a bit and then were finally called back. I'd been prepping her for this by telling her they were going to put lotion on her tummy. Thankfully this kid LOVES putting lotion on. She only freaked out a little bit at first, but then chilled out.

Waiting to be called.

The echo was done in Dr. K's ultrasound room. He's set up for kids. Got the bed against the wall, TV in the corner of the room, kid friendly stuff on the walls. Yep, that was easy. I just hopped up there with her and things were fine. She only got a little annoyed after the tech had to switch to a smaller wand, but we were almost done by that time.

Waiting on the echo to begin.

Then we got moved to the other side of the building to do the renal ultrasound. Yeah, that room is so NOT set up for kids! But we made due with the tablet and she was fine with more "lotion" and just chilling watching "The Chica Show." (Thank God for WiFi!)

Holding Tinky Nee while getting her kidneys checked.

After we finished, she decided she wanted to get dressed in the waiting room and not in the ultrasound room. Gee, thanks kid for making me out to be the weird parent dressing her kid in the waiting room! And then she ONLY wanted to put on her "skinny jeans" and wore her Doc shirt home.

On the way home! We had to get something to drink and she shared it with Tinky Nee!

All told, it took about an hour to do both ultrasounds. Yeah, Dr. K was a little annoyed that they didn't just schedule us to see him after all the goo and scanning, but I was seriously okay with it. After an hour of keeping your two year old busy while they ran slime over her tummy, the last thing either of us wanted to do was see anyone else. We just wanted to go home and hang out, which is what we did!

CHD Awareness Week

This week is Congenital Heart Defect awareness week. And while we know what caused Princess' heart condition, you can't help but bond with other Heart Families when you are seeing a pediatric cardiologist. As it stands right now, I personally know 2 Heart Mammas with Heart Babies. I have come to know others online through various other ways: blogs, support groups, etc. CHDs affect 1 in 100 children! And while surgery can repair a broken heart in a child, it isn't a cure. And while some children require heart transplants, it means a lifetime of medication and doctors visits for them.

So what can you do? Well, there are simple things:

• DONATE BLOOD: This is simple and easy to do. Anyone healthy over 18 and 110lbs can donate blood. It doesn't take long and they give you free cookies afterward! Many children with CHDs require blood transfusions. Princess almost did.

• ORGAN DONATION: While this may be a simple box to check on your driver's license, please don't take it lightly. Talk to your family about it. Let them know you are an organ donor. And if, by some chance, your child earns their angel wings at some point and their organs are healthy, please donate them. There are children who are waiting for a donation too. Organ donors can save many lives.

• PULSE OX MONITORING: This is SO SIMPLE. If you or someone you know is pregnant or just had a baby, tell them to ask for pulse ox monitoring. It's a simple, non-invasive test. Both my children were monitored after their birth. Princess, obviously, but Little Man was as well. He was born with the cord wrapped around his neck, so the hospital thought it was important to put him on the monitor. It can be the first indicator of a CHD.

• ECHOCARDIOGRAMS FOR SPORTS PHYSICALS: This one is near and dear to my heart. When Princess was first diagnosed with cardiomyopathy, I Googled it. And what came up were young people having heart attacks and dying on the sports fields. This is something that is easily preventable. Just ask that your child have an echocardiogram (ECG or heart echo) as part of their sports physicals. It is another non-invasive test. It's an ultrasound of your heart. One of my Heart Mamma friends just found out that her oldest has a CHD because the youngest was at his cardiology appointment and they were curious. It wasn't required as part of his sports physical and he's a wrestler.

• AWARENESS: This is why I'm doing this post. Whereas Princess will, hopefully, no longer have her left ventricular hypertrophy because it will be such a small part of her heart that is damaged, there are kids out there who will always have a heart defect. They will always have the scars of their heart defect. They will always have to take medication, see specialists, have tests and procedures done. CHDs affect 1 in 100 children.

So, while Princess doesn't have a true CHD, it was caused by her PHA2, we still are aware that 1 in 100 babies are born with congenital heart defects and many of those are preemies. Princess was a preemie and she very well could have had a hole in her heart. There were many babies in the NICU that did. So please hug your children tight today and make sure other parents out there know the simple things they can do to help their children. And while surgery will fix many CHDs, it isn't a cure. More research is needed to find out if there will be a cure. Lots of love today on Heart Day.