Natalie's regularly scheduled cardiology visit and 4 year old well-child check was yesterday. Natalie and I headed to Anchorage for our round-trip venture at 7 AM. We watched the sun rise as we drove West, but didn't actually see it until we reached sea level in Anchorage.
Natalie has grown in the past six months. It's evident because her 3T shirts aren't covering her belly anymore and we've graduated to size 4 all-around. She still has a hard time keeping pants up-even with the adjustable waistbands. As I expected, she weighed in at 29 pounds at the peds office and was 38 inches tall. She's still not tipping 30 pounds. Her doctor did emphasize that she has gained three pounds and grown two inches in the last year and is following her curve in the 10% percentile. She satted 80-85% which is great.
We discussed her leg circulation. In her heart cath this summer, they tried to access her through her femoral arteries in the groin, but were unable to go anywhere. The clots that she had as an infant in both femoral arteries have made it impossible to cath from the groin. This is frustrating because it means that she will need to have all her heart caths from here on out through her neck (which brings increased risk). Anyway, I've noticed that there are times when her feet look white. This mostly happens when she is very active like when she's bouncing on the trampoline (this summer) or when she's running around the house. Sometimes, it takes at least a minute for her feet to pink up again. She's complained of intermittent leg pain at night too, so I asked if this could be related. Dr. Brauner and Dr. Brand both thought that it wasn't and contributed the leg aches to growing pains and maybe fatigue and hydration. Dr. Brauner explained that if there was arterial insufficiency due to blockage, there could be arterial claudication going on, but that pain usually exists during exercise. Since Natalie's is at rest, her leg cramps are probably due to growing pains. Usually a hot pack will make her more comfortable, but there are times when she gets a Tylenol. Other than her poor circulation to her legs, there wasn't much of an answer for the discoloration.
Dr. Brauner did bring up the fact that when she reaches 33 pounds, he will present her to Seattle Children's cardiology group and then they can make a decision about when to proceed for the Fontan. Since she was satting so good and not yet reaching 30 pounds, and after the conversation we had with Dr. Jones this summer, I figured the Fontan would be put on the back burner for quite awhile. We'll see what happens. It may be "quite awhile" before she reaches 30 pounds! Ha!
Dr. Brauner did do an echo this time and all looked great! All valves were functioning perfectly and there was blood flow through her aortic valve from the small left ventricle that she has. This is greatly beneficial as it relieves some of the workload of the right ventricle.
We are so thankful for Natalie's health right now. She's made it through this much of winter without any sicknesses. I think she may have had a runny nose for three days this Fall, but that's been it! Of course she got her flu shot and is probably benefiting from all the exposure and antibodies she acquired in her second year of life.
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This is just a thought, but I'll throw it out there because our six year old has complained of leg pain since he was about three. I asked Rebekah's PT about it, and she noticed that Aaron is flat-footed (meaning he doesn't have arches that support his feet when he walks). He was literally walking on the insides of his feet instead of fully on the bottoms. She sent us to an orthotist who fitted him with plastic arches for his shoes. That was about a year ago, and I've only heard him complain of leg pain once - when he went several days wearing crocs and not his sneakers with the arch supports. It may not be the same thing for Natalie at all, but it would be worth checking. :)
ReplyDeleteHi Natalie
ReplyDeleteMy name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are a princess hero, beautiful trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. http://www.miraclechamp.webs.com I was born with a rare life threatening disease, and have 14 medical conditions all together. I love it when people sign my guestbook.
Hi Angie,
ReplyDeleteThanks so much for the thoughtful comments you've left on our blog recently and for keeping Gracie in your prayers. It's great to hear Natalie's sats are holding well, her tune up in the cath lab really helped! Speaking of which we also participated in the research study of examining protein in the blood from various parts of the heart. They told me they were only 3 patients away from having full enrollment to be able to begin the analysis. I asked them to email me with the study results. I'll let you know if I hear anything.
By the way, I love reading your posts about life in Alaska! I lived up there for a couple years when I was in my early twenties and I have found memories of my time up there. I had forgotten a couple of things until you reminded me, like frozen eyelashes and square frozen tires! :)