What an adventure our lives have turned into. We boarded an airplane with four kids under the age of 6 and they were so good. Our two year old had her moments but overall we were really happy with how they did.
Traveling with oxygen is quite a bit of work but Adelina did well. We arrived home on Wednesday (our AC went out on the way home :( ) and by Thursday morning Addy's sats were 69. I put her on oxygen and should have taken her to the ER but assumed it was normal for heart babies with a cold. Fast forward to 3 a.m. and she's running a fever. I called her pediatrician and he sent us to the ER. I went to the local ER and was promptly told that they couldn't really help her (good to know). I then went to the children's hospital where they did blood work, poked and prodded, started an IV which promptly failed, etc. We were sent home the next morning with, "she has the enterovirus." So, she has a cold, we've been here before so I though o.k. we can handle this. I should note I had had no sleep that night so hind sight is 20/20 but sleep deprivation is a bear.
Sunday morning our baby girl threw up her meds but it was about 30 minutes after giving them, if it's within 5 you can re-dose but I wasn't sure about 30 so I called the on-call cardiologist. He was wonderful but VERY concerned that no echo had been done in the ER. Now that I think back I knew better. He kindly insisted that we take her to Texas Children's in Houston.
This is a whole new ball game for us. Our wonderful friends came and traded vans with us and took our other three kids. We packed way too slowly but eventually made it out the door. From now on we have a "to-go" bag so we can pack off a list and have back ups in a bag just in case. Thankfully it was Sunday so traffic was light. Heart kids get an "Ace of Hearts" card that pushes them to the front of the line in the ER, we didn't have one but everyone knew exactly what to do, it was so nice.
It was a long night but within a short time we knew that her heart was not doing ok. The first thing they did was an echo and blood pressure in all four limbs. I'm still kicking myself that I missed that they didn't do these things in our first ER visit. Her blood pressure in her right arm is really high, this means that a part of her heart is narrowing and needs intervention. We stayed until Thursday morning while they weaned her off oxygen and got her back to full feeds (I had been continuously feeding her to compensate for constantly throwing up). My sweet husband went back and then returned to Houston to pick us up. We go back at the end of the month to meet her knew cardiologist and schedule her heart cath. It has also been determined that she can't wait for a G-tube but she has to wait until she hasn't been sick for six weeks to have the heart cath and then a couple weeks later she can get the G-tube.
Aside from the craziness of returning home we have LOVED seeing all our friends and we are adjusting to doing things on our own. I keep saying it's like we moved in without moving out. A year is a long time for a child. They have rediscovered their toys, keep trying to get old clothes to fit, loved playing in the water in the morning and evening. Dad and Mom have loved having them in their own rooms. We found a scorpion this morning and later I went into one of the kids rooms to find it had been hastily picked up, lol. Motivation to keep clean? I think so, lol!
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