Saturday, July 28, 2012
Tuesday, July 24, 2012
Good progress... 23 days and counting
Keane has returned to his normal perky self. Actually, he has been a total crack up lately. Very proud of his daily physical accomplishments. He is getting much stronger; able to hold his head up when going from laying to sitting position, sitting up with light support on his core and achieving a death grip on his sister's hair.
Today Keane had a great weigh-in. He's up to 12 lbs, 3.5 oz - aka normal weight gain...! Only 23 days to go until surgery.
Today Keane had a great weigh-in. He's up to 12 lbs, 3.5 oz - aka normal weight gain...! Only 23 days to go until surgery.
Thursday, July 19, 2012
Ha! No mortal threat...
You really have to carve out the entire day when you go to the Children's Hospital. Today was the first time that Avery went to Doernbecher's also. She was really quite good and glad she finally got to meet the mysterious Dr. Kelly.
Where are we today? Well, we are keeping the increased dose of Lasix - that threat on Tuesday was real and the dose adjustment was necessary. He does have mild congestive heart failure because he does have a failing heart, but none of that is new information. The status update today - Keane has been sick. You may be thinking, well, "duh" (which is, the word of the month learned at preschool, if you can consider "duh" a word). However, not ill and deteriorating quickly due to his heart. Really, he has just been sick. The same type of sick that kids with perfectly great hearts suffer from on a regular basis. Ha! That's what it's like to be the parents of a cardiac kid - you assume that all negative health symptoms are a sign of impending doom.
Here we were thinking that he is practically on death's door with a sudden increase of symptoms: congestion, increased trouble breathing, cough, fatigue, diarrhea, poor appetite and pale skin color . Granted, he probably doesn't handle routine viral infections as well as kids with properly functioning tickers, but it wasn't a mortal threat, this time. Many of the symptoms of a common upper respiratory infections are signs of poor heart functioning. There is enough overlap that I don't feel completely lame. However, Grammy and I both laughed out loud when Dr. Kelly said, "well, it appears Keane has been suffering from a... (pause)... cold." Then Avery said in the car, "you know, sometimes you can get sick without getting snot-tles." Isn't that the truth? Dr. Kelly did reinforce the baby bubble mentality and gave Avery some good pointers on how to love on her brother without exposing him to bugs that cause "snot-tles."
We did receive confirmation of a surgery date today. Keane will be having surgery on, or before, or sometime during the week that encompasses August 16th (aka practically the next millennium). Just this week there were three babies born at Doernbecher's that need more immediate repair, so we must channel our inner Zen and be flexible with the date. As long as Keane is stable and comfortable we've got a few more weeks to go before the next phase of life can commence - the post-open heart surgery phase.
Where are we today? Well, we are keeping the increased dose of Lasix - that threat on Tuesday was real and the dose adjustment was necessary. He does have mild congestive heart failure because he does have a failing heart, but none of that is new information. The status update today - Keane has been sick. You may be thinking, well, "duh" (which is, the word of the month learned at preschool, if you can consider "duh" a word). However, not ill and deteriorating quickly due to his heart. Really, he has just been sick. The same type of sick that kids with perfectly great hearts suffer from on a regular basis. Ha! That's what it's like to be the parents of a cardiac kid - you assume that all negative health symptoms are a sign of impending doom.
Here we were thinking that he is practically on death's door with a sudden increase of symptoms: congestion, increased trouble breathing, cough, fatigue, diarrhea, poor appetite and pale skin color . Granted, he probably doesn't handle routine viral infections as well as kids with properly functioning tickers, but it wasn't a mortal threat, this time. Many of the symptoms of a common upper respiratory infections are signs of poor heart functioning. There is enough overlap that I don't feel completely lame. However, Grammy and I both laughed out loud when Dr. Kelly said, "well, it appears Keane has been suffering from a... (pause)... cold." Then Avery said in the car, "you know, sometimes you can get sick without getting snot-tles." Isn't that the truth? Dr. Kelly did reinforce the baby bubble mentality and gave Avery some good pointers on how to love on her brother without exposing him to bugs that cause "snot-tles."
We did receive confirmation of a surgery date today. Keane will be having surgery on, or before, or sometime during the week that encompasses August 16th (aka practically the next millennium). Just this week there were three babies born at Doernbecher's that need more immediate repair, so we must channel our inner Zen and be flexible with the date. As long as Keane is stable and comfortable we've got a few more weeks to go before the next phase of life can commence - the post-open heart surgery phase.
Wednesday, July 18, 2012
Heading to Portland...
...likely this afternoon following a stop at the pediatrician's office. Appointment tomorrow at 1230p for chest x-ray and follow-up with Dr. Kelly.
Keep you posted...
Keep you posted...
Tuesday, July 17, 2012
Bogus weight gain
Sigh.
I took Keane in for his weight and oxygen saturation check today. Both results were still acceptable - 2.5 oz of weight gain since Friday and O2 sats between 84 and 88. A little lower than last week on the O2, but still above the indicated alarm level of 80.
I decided that if I did not check in with Dr. Bob, I would regret it. Since Thursday, a few symptoms/behaviors had bothered me. First, "hello, anybody home?" Keane has seemed a little "checked out," for lack of a better term. Second, he doesn't seem to have much appetite when he wakes up in the morning. Last, I cannot seem to control his temperature. Mostly, he seems to be getting too hot, without reason (we are lucky enough to live in a house that essentially never changes temperature). Dr. Bob did a physical exam for cardiac issues and, sure enough, his liver had descended in his abdomen again (i.e. - mild congestive heart failure). As a result, we've increased the Lasix to try and remove excess water that may be accumulating around his heart and lungs. He'll probably drop some weight again as his body gets rid of the extra fluid.
What's next? Good question. I spoke with Dr. Kelly today. The marching orders are if my Mom-dar says he is getting worse, drive him to Portland. Ironically, tonight Keane started sweating again while nursing (aka getting worse). Luckily, now I am am an old pro. I gave him some passive oxygen, a few kisses and put him to bed. Then, I called Dr. Bob again (this man should get an award for being the most rockin' pediatrician ever). Because I had only just administered the increased dose of Lasix, we couldn't expect dramatic improvement yet. If he is unchanged in the morning...northbound we will travel. As Dr. Bob said - there is nothing we can do for him in Eugene... he needs a Peds Cardiologist to examine him.
Where will we be by tomorrow afternoon? Your guess is a good as mine.
I took Keane in for his weight and oxygen saturation check today. Both results were still acceptable - 2.5 oz of weight gain since Friday and O2 sats between 84 and 88. A little lower than last week on the O2, but still above the indicated alarm level of 80.
I decided that if I did not check in with Dr. Bob, I would regret it. Since Thursday, a few symptoms/behaviors had bothered me. First, "hello, anybody home?" Keane has seemed a little "checked out," for lack of a better term. Second, he doesn't seem to have much appetite when he wakes up in the morning. Last, I cannot seem to control his temperature. Mostly, he seems to be getting too hot, without reason (we are lucky enough to live in a house that essentially never changes temperature). Dr. Bob did a physical exam for cardiac issues and, sure enough, his liver had descended in his abdomen again (i.e. - mild congestive heart failure). As a result, we've increased the Lasix to try and remove excess water that may be accumulating around his heart and lungs. He'll probably drop some weight again as his body gets rid of the extra fluid.
What's next? Good question. I spoke with Dr. Kelly today. The marching orders are if my Mom-dar says he is getting worse, drive him to Portland. Ironically, tonight Keane started sweating again while nursing (aka getting worse). Luckily, now I am am an old pro. I gave him some passive oxygen, a few kisses and put him to bed. Then, I called Dr. Bob again (this man should get an award for being the most rockin' pediatrician ever). Because I had only just administered the increased dose of Lasix, we couldn't expect dramatic improvement yet. If he is unchanged in the morning...northbound we will travel. As Dr. Bob said - there is nothing we can do for him in Eugene... he needs a Peds Cardiologist to examine him.
Where will we be by tomorrow afternoon? Your guess is a good as mine.
Sunday, July 15, 2012
Friday, July 13, 2012
Success on the scale
Today Keane weighted 11 pounds, 12.5 ounces, aka officially the most he has ever weighed. That's three ounces in two days (normal weight gain is 0.5 to 1 ounce per day) . Excellent!
No word from OHSU re: surgery date.
No word from OHSU re: surgery date.
Thursday, July 12, 2012
Polar Bear Club Official Member
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