SO, I realize I have been less than stellar at updating the blog. Sorry! The latest with Asher is this:
Last Wednesday he woke up purple. Now, Asher usually wakes up with purple feet, which goes away in 30 minutes or so. And when he gets a little cold, like after a bath, or swimming at the pool, he turns purple, but that will go away also (usually 1-2 hours of warming him up). But he woke up Wednesday, not cold, and purple. Which lasted 2 hours. And his capillary refill was over 5 seconds (normal is less than 2). So, we decided he needed to be seen by the pediatrician. I headed in, and although his oxygen saturation was great, his doctor was concerned. He called cardiology, and they had us head to Primary for a chest x-ray. In between leaving the pediatrician and having the x ray done, Asher also became very lethargic and kicked up a fever. I came home from Primary at 1pm, and he had a fever of 101.4. So, I called the pediatrician to let him know, and see what the x ray looked like. The x ray was fine, and he had me start Ash on Tylenol for the fever. Asher slept most of the afternoon. By 6 pm, he had a fever of 103.2 (no other symptoms AT ALL), so I called the pediatrician AGAIN (yes, I have his home number also). At first he wanted to see Ash in the morning, but then decided we should head to the ER and have them do a blood culture and blood count. Fun. We packed our bags, left kids with daddy, and headed out. One of the perks of a heart kiddo, is you don't have to wait at the ER, they get you right into a room! But, you still have to wait for tests and what not. By midnight-ish, they felt they should keep us overnight. Ash's white blood cells were low, and there was a high turnover of immature blood cells, which signals an infection in the body. We didn't get settled in until 3 am- and then we were up at 6:30 am. Uuggh. And sleeping on a hospital cot while 7 1/2 months pregnant is not fun. Thursday consisted of more tests, and an echo cardiogram. Oh- and Adam and the kids visited for a good chunk of the day. The echo was much the same as his last one in April- still a severe leak, but not much more. His main pulmonary artery (the part they replaced in September) is stenotic (narrowing), which is new. But none of this would cause his symptoms. So, they also ordered some blood tests to check for infection in his heart (which an echo wouldn't show). We discussed his purple spells, and the cardiologists felt that it had to do with his poor circulation, and the fact that when Ash had his surgery, they left a hole open in his atrium (didn't know that!), which allows his blood to mix more than normal, resulting in more purplish blood. However, they would like us to get a pulse oximeter for home, so we can monitor him when he has these spells.
Back to the fever- it was still happening Thursday whenever the Motrin wore off, so we had to stay Thursday night as well. By Friday, they decided it was more than likely a virus causing it, since all of his blood work was coming back negative (no infection in the heart-phew!). SO, although a few tests results were still pending, they let us go home. He still had a fever Friday, but by Saturday all was well.
Also, the doctors noticed that Asher's height and weight have remained the same since April. With the problems in Asher's heart, his heart has to work a lot harder all the time. Basically, his heart is constantly beating the same as if you or I were out jogging. They decided we need to put him back on formula, and concentrate it more, and add more calories to everything he eats. As in, put butter on EVERYTHING. They are giving Asher a diagnosis of "failure to thrive". Yay.
Welcome to the world of heart kids- a simple virus with a fever lands you at the hospital for 2 1/2 days, and gets you a diagnosis of "failure to thrive" (I really dislike that term)!
On a side note, when the kids came to visit, Jon kept asking for Dr. Jen. She was the resident that was his Dr. when he was hospitalized with a staph infection. Thursday afternoon we found a cardiology resident who knew Dr. Jen, and she had her paged. Unfortunately, Jen was in clinic that day, and couldn't visit. Friday the kids weren't at the hospital, but Jen came to visit, camera in tow, hoping to see her favorite "batman" patient. She even gave me a big hug when she saw me. She said next time I'm there with Jon I need to have her paged so she can see him. I love Primary's soo much! Their Dr's and nurses are the best.
So, now it is almost a week later. Ash is doing well,no more fevers or mystery purple spells (just when he goes swimming) and we need to see the pediatrician to see if he has gained any weight since we've switched up his diet. We also just got back from a trip to Moab (we left Father's Day), which I will update on tonight/tomorrow.