Friday, July 22, 2011
One more piece of GOOD news
I can't believe I forgot to include this in my post yesterday, but we got a call from the endocrinology department at Texas Children's and all of the results of Blake's blood tests came back clear of antibodies indicative of type 1 diabetes, which is fabulous! Of course, this doesn't mean that he couldn't develop him later, but he just has the standard risk associated with being the son of a diabetic, not an increased risk. I'll take it!
Wednesday, July 20, 2011
Great Progress and Great News = Great Day!
Today is one month since Blake's surgery. He had a follow-up cardiology appointment yesterday, and they say he is still looking fabulous (which we already knew)! His oxygen sats are still 96-97, his heart function is continuing to improve, and he has no fluid around his lungs or heart.
Dr. Shapiro removed his last suture (from his last chest tube) and all of the bandages from his chest incision have come off. Tomorrow we will have freedom to swim and take baths, which will be a huge diversion and step towards normalcy. And, in more exciting news, they are starting to lift his fluid restrictions; this week he got 200 cc (about 6 oz.) added which has made a huge difference in the happiness factor. Next week as long as he tolerates the addition, we can add another 200 cc, and after that UNRESTRICTED! Yeah! While at the cardiologist, we also tested pulling Blake up by his arms and lifting him under his arms to which he happily exclaimed, "That didn't even hurt!"
Needless to say we are ecstatic with his recovery, but the day in/day out is less than riveting. Below are some photos of life of a 3-year-old prisoner!
Chicks dig scars!
Can't wait to go swimming!
Mommy's office buddy
Just watching Toy Story for the millionth time!
Sunday, July 17, 2011
Feeling Awesome!
3 weeks out and Blake is feeling absolutely fabulous. He is running and jumping around, chasing his sister, and full of energy!
It's funny, but before the surgery, we never thought Blake was sick or slowed down by his heart. Before the Fontan, we used to be able to hear Blake breathing heavily from wherever we were in the house, and the other day we were playing Hide-N-Seek and I really couldn't find him because I couldn't hear him. The little things like his pink lips, and his lack of heavy breathing, not to mention is oxygen saturations of 97, really are making a world of difference.
We were able to stop one of the diuretics last week, and this week his cardiologist is going to reevaluate the dosage on his other one. He will also get the stitch from his last chest tube removed this week. He still gets pissy at us when he can't have as much as he wants to drink, but we know it's only 3 more weeks, and we are all counting the days.
We are counting our blessings for this healthy little boy every day!
Thursday, July 14, 2011
Heart Center at Texas Children's
This is an absolutely amazing look at the Texas Children's Heart Center, Dr. Fraser, and his entire team. So much of what's in this video captures the people and images that become our life when we are in the hospital, and we are incredibly grateful that these are the people helping Blake!
Friday, July 8, 2011
Post Fontan - Looking Good!
Blake is staying at home for the next four weeks to be sure we minimize his exposure to germs and that he doesn't have any trauma to his chest, and we have to stay tight on the fluid restrictions, but he seems to be adjusting well to this routine. Everyone that has seen him so far can't believe how great he looks and his amazing color!
We just can't thank everyone enough for your wishes and prayers. We have truly been so blessed.
Wednesday, July 6, 2011
Amazing Story of HLHS Survivor Born in 1985
This story was featured in July's It's My Heart Newsletter. This woman's parents are so incredibly brave and it's paid off in spades for her. These stories give me so much confidence and hope that our Blake can live a full and normal life knowing how far medicine has come since she was born. So happy to have read this today!
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Maribeth's story told from her perspective.
I was born on April 30, 1985 in Dallas, TX. Two days later, the doctors informed my parents of a heart murmur they had heard and assured them that it was probably nothing; they just wanted to check and make sure before sending me home. A few hours later, the doctors returned to my mom's hospital room informing them that the heart murmur was more serious than they thought. The told my parents that I had a congenital heart defect known as Hypoplastic Left Heart Syndrome which meant my left ventricle did not fully develop so the amount of blood circulating my body was slim. They gave me about a week to live. My parents were told that there was nothing they could do to correct this defect and that I would die peacefully in my sleep. They gave my parents the option of taking me home or keeping me in the hospital for the next week or so.
Praying for a miracle, my parents took me home. Numerous friends and family members came to Dallas to say "hello" and "goodbye." Around day 5, my aunt went to her school library and began reading all books she could on heart defects. In an article of Reader's Digest, she came across a story on a Dr. William Norwood who had come up with a surgery to try and correct the hearts of babies born with HLHS. After many calls to different doctors/hospitals/surgeons, etc., my parents got in touch with Dr. Norwood who assured my parents that I was a candidate for the surgery. At the time, the survival rate was about 20%. They couldn't make any guarantees other than they would do their very best. All of this information was made by day 7. My parents decided that if I lived through the night, we would go to Philadelphia for the surgery. The morning of day 8, my parents were woken up by a phone call from Philadelphia to see whether or not we were coming. Seeing that I was still breathing, my parents said, "yes" and that afternoon I was CareFlighted to the Children's Hospital of Philadelphia. I underwent the first stage of the Norwood procedure in May '85 at 9 days of age. After surgery, I was in the hospital for about 5 weeks before returning to Dallas.
I went back to Philadelphia for the second and final stage of the Norwood Procedure at 18 months in October '86. At the time, I was the 16th baby to have the entire operation completed and the 11th to survive. Of those 11 survivors, about half of them have passed away due to other complications. After about 5 weeks of recovery, I returned to Dallas and have lived a more than normal life for a child with HLHS. I have a younger brother and two younger sisters. All three of them have healthy hearts. Up until 1994, I would go back to Philadelphia every other year for a check- up. I began seeing a cardiologist at Children's Medical Center of Dallas in 1994 and then switched over to another cardiologist at Medical City beginning in 1999 and have been seeing him ever since.
The summer of '99, my cardiologist at Medical City ran a stress test on me. Being his oldest surviving HLHS patient, he recommended that I not do athletics in high school and restricted me from participating in any rigorous exercising. His whole theory was, "Your heart's been working this well for so long, why do anything to cause it to stop?" He also put me on a low dose aspirin and another medication to stabilize my blood pressure. Other than that, I'm perfectly fine. I graduated from high school at the top half of my class in 2003 and had no trouble in college. I graduated from Stephen F. Austin State University with a degree in Family/Child Development in August of 2007.
This next school year I will begin working with middle school special education students. I see my cardiologist once a year and have always come back with a great report.
------------------------
Maribeth's story told from her perspective.
I was born on April 30, 1985 in Dallas, TX. Two days later, the doctors informed my parents of a heart murmur they had heard and assured them that it was probably nothing; they just wanted to check and make sure before sending me home. A few hours later, the doctors returned to my mom's hospital room informing them that the heart murmur was more serious than they thought. The told my parents that I had a congenital heart defect known as Hypoplastic Left Heart Syndrome which meant my left ventricle did not fully develop so the amount of blood circulating my body was slim. They gave me about a week to live. My parents were told that there was nothing they could do to correct this defect and that I would die peacefully in my sleep. They gave my parents the option of taking me home or keeping me in the hospital for the next week or so.
Praying for a miracle, my parents took me home. Numerous friends and family members came to Dallas to say "hello" and "goodbye." Around day 5, my aunt went to her school library and began reading all books she could on heart defects. In an article of Reader's Digest, she came across a story on a Dr. William Norwood who had come up with a surgery to try and correct the hearts of babies born with HLHS. After many calls to different doctors/hospitals/surgeons, etc., my parents got in touch with Dr. Norwood who assured my parents that I was a candidate for the surgery. At the time, the survival rate was about 20%. They couldn't make any guarantees other than they would do their very best. All of this information was made by day 7. My parents decided that if I lived through the night, we would go to Philadelphia for the surgery. The morning of day 8, my parents were woken up by a phone call from Philadelphia to see whether or not we were coming. Seeing that I was still breathing, my parents said, "yes" and that afternoon I was CareFlighted to the Children's Hospital of Philadelphia. I underwent the first stage of the Norwood procedure in May '85 at 9 days of age. After surgery, I was in the hospital for about 5 weeks before returning to Dallas.
I went back to Philadelphia for the second and final stage of the Norwood Procedure at 18 months in October '86. At the time, I was the 16th baby to have the entire operation completed and the 11th to survive. Of those 11 survivors, about half of them have passed away due to other complications. After about 5 weeks of recovery, I returned to Dallas and have lived a more than normal life for a child with HLHS. I have a younger brother and two younger sisters. All three of them have healthy hearts. Up until 1994, I would go back to Philadelphia every other year for a check- up. I began seeing a cardiologist at Children's Medical Center of Dallas in 1994 and then switched over to another cardiologist at Medical City beginning in 1999 and have been seeing him ever since.
The summer of '99, my cardiologist at Medical City ran a stress test on me. Being his oldest surviving HLHS patient, he recommended that I not do athletics in high school and restricted me from participating in any rigorous exercising. His whole theory was, "Your heart's been working this well for so long, why do anything to cause it to stop?" He also put me on a low dose aspirin and another medication to stabilize my blood pressure. Other than that, I'm perfectly fine. I graduated from high school at the top half of my class in 2003 and had no trouble in college. I graduated from Stephen F. Austin State University with a degree in Family/Child Development in August of 2007.
This next school year I will begin working with middle school special education students. I see my cardiologist once a year and have always come back with a great report.
Maribeth and her dad today
Tuesday, July 5, 2011
Green Light Pending X Ray
We have been given the OK from Dr. Fraser to go home pending nothing unexpected comes up in our xray. We should be getting that around 2:30 then the doctors will examine and let us go. Blake is very happy as are we. One more last hurdle.
Recovery - Day 11
As you can see by the previous posted pictures, Blake is tube free! Yeah! He thinks this is a ticket to be crazy again! He's been running around the hospital all morning, happy to be liberated. His post-tube X-ray looked, as the doc put it, "Perfect".
One of Dr. Fraser's nurses came by this morning, and she snipped the knots on the top and bottom of Blake's chest incision. These knots hold the internal stitches in place, and are established enough now that they are unnecessary.
The cardiologists have come by and given their blessing that we can be released pending a 3PM follow-up X-ray (they are looking to be sure their is no fluid accumulation or air pockets in his chest).
But, the real decision maker is Dr. Fraser. He has two "short" surgeries today, and he has to be the one to bless us to leave. We know he is super conservative, and we are hoping that the fact that we already scheduled a follow-up cardiologist appointment in Austin on Thursday will help persuade him.
We can't tell you how much we appreciate all of your prayers, comments, phone calls, emails, and texts. We are ready to go home, be a family again, and all sleep in our own beds!
One of Dr. Fraser's nurses came by this morning, and she snipped the knots on the top and bottom of Blake's chest incision. These knots hold the internal stitches in place, and are established enough now that they are unnecessary.
The cardiologists have come by and given their blessing that we can be released pending a 3PM follow-up X-ray (they are looking to be sure their is no fluid accumulation or air pockets in his chest).
But, the real decision maker is Dr. Fraser. He has two "short" surgeries today, and he has to be the one to bless us to leave. We know he is super conservative, and we are hoping that the fact that we already scheduled a follow-up cardiologist appointment in Austin on Thursday will help persuade him.
We can't tell you how much we appreciate all of your prayers, comments, phone calls, emails, and texts. We are ready to go home, be a family again, and all sleep in our own beds!
Monday, July 4, 2011
Recovery - Day 11
3:45 PM Update - Blake's drainage is great today, since midnight last night, he has only drained 16 cc, but because his last drainage measurement before that was still high and the surgeons are super conservative they want to wait it out through the night, and if everything stays the same, they will remove the tube in the morning. They are going to try and get us released by 5 PM tomorrow night. So, not the news we were hoping for, but not terrible news either.
9:30 AM Update - Blake's drainage was down about 20 cc yesterday, but it was still more than they wanted to pull the tube. So the doctor's plan was to wait until tomorrow, schedule to pull the tube then, then watch for 24 hours and release us on Wednesday.
Fortunately, Blake has really stubborn parents. The magic number we are trying to get to for output is 50 cc for a 24-hour period. Since 6pm last night he has only put out 6 cc, so we asked them to consider a 6pm to 6pm period to evaluate and if we can stay low during that period to pull his tube tonight and evaluate overnight and release us tomorrow. They agreed and now we have a plan we are all on board with - they don't want us to be chest-tube hostages any more than we want to be.
So, here's where you come in. Please pray, take out your rabbit's feet, do a voodoo dance, anything you can. Blake needs an awesome day with minimal output! Thanks everyone!
Sunday, July 3, 2011
Recovery - Day 10
Saturday, July 2, 2011
Recovery - Day 9
Well, we are still here, still much of the same. Blake is still draining. It's slowing down, but very slowly. Tuesday is now the earliest we could get out of here. Blake's sats continue to go up (ranging between 96-98) and he continues to be in good spirits.
We thought the hospital was slow on a regular weekend, but on a holiday weekend it's practically vacant. We are stir crazy, to say the absolute minimum. We did convince the attending doc to let us wander off the 15th floor, so we went to go see the miniature train village which was a thrilling adventure.
Since there isn't much new news to report, I thought y'all might like a picture of our groundhog day:
5 am - morning meds and vitals
6 am - surgical rounds
7 am - visit from cardiologist resident
8 am - blood labs/X-ray
Walk the halls
Breakfast
9 am - 11 am - cardiology rounds
Walk the halls
Lunch
Afternoon follow up tests (usually requiring more blood)
1 pm - meds and vitals
Walk the halls
5 pm - meds and vitals
Dinner
Walk the halls
9 pm - meds and vitals
Bed
Rinse, wash, repeat
Friday, July 1, 2011
Recovery - Day 8
Good news is endocrinology is not concerned about Blake's blood sugars. Some tests they did yesterday came back negative and his A1C (which is a common blood test for diabetics) was great. It takes two weeks or so for the antibody tests to come back, so they will call us with those results - essentially the presence of these antibodies indicates Blake's risk for developing type 1 diabetes. But for now, this is a concern we are going to put aside.
Not so great news is Blake's tube is still draining like crazy. They are going to add another diuretic to his meds today to see if we can help move this drainage along.
He will get an echocardiogram today to look at his heart function post-op so that if he miraculously dries up over the holiday weekend, we can be discharged without having to wait for an echo.
Thanks for your continued thoughts and prayers, please keep praying that he dries out and that his new heart function is strong.
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