I was sitting down to write this post about Nannie, and realized I haven't updated on Matthew. Let me do that first.
Matthew saw the doctor last week. His pressure is creeping back up. It is 24 right now, up from 12. That is to be expected. They dropped him down to one drop, but I don't quite understand why. She expects his pressure to keep creeping up, so if you expect it to keep going up, why stop a med?? Beats me, but I'm not the doctor. Anyway, he goes back in three months. Once it hits the 30s again, she wants to redo the surgery.
I know this sounds so bad, but it is so frustrating, I just wish they would leave him alone. We are just buying time till he loses his eye. I guess any time we can buy is worth it. It's just hard watching your kids go through this garbage!
OK so Nannie. Ever since she had RSV/pneumonia/bronchiolitis in March she has had a chronic cough and runny nose. They tried antibiotics on her, with no luck. She's been to the ER where they said she had asthma and needed to see pulmonary. I know ER docs are worthless and can't be trusted to diagnose anything, so we were just waiting to see pulmonary.
That appointment was today.
The doctor said on her x-ray in May, her lungs were very over inflated. What the heck does that mean? I have no idea, probably should have asked! Anyway, he said that RSV destroys the airway. I assume the cilia, but again, I didn't ask. He said that since her RSV was so severe it could take up to two years for her to fully recover from it! Holy cow, that's a long time! He commented on how atypical her RSV was, since it hit her so hard and she was already so old. He obviously doesn't know that my family is pretty atypical! HA!! He then went on to say he had never heard of siblings with TAPVR and went on and on about how unusual that is. Really? Never heard that before! Hehe!
So, all of that to say, we are starting her on inhaled meds (pulmocort) two times a day and singulair once a day. We go back after we get home from vacation in September to see how things are. At this point, there isn't a stop time for anything. I guess we play it by ear.
So that's that. Nothing too exciting, just too long for a status update!!
Wednesday, June 22, 2011
Sunday, June 12, 2011
Pulse Oximetry: Why it should be mandatory
August 5, 2003, my beautiful baby boy was born after an uneventful pregnancy and delivery. When he was born, however, he didn't cry. I asked over and over, "what is wrong with my baby?" The answer repeatedly was, "nothing, he is perfect" and "we just need to get him started". They slapped his feet, they jiggled him around, they sat him up, laid him down, finally, he let out a weak cry. Then it was heartier. Hooray, he WAS perfect. They bundled him up and gave him to me.
The nurses and midwife then left the room in order for us to bond with him.
Our family came in.
When my mom saw him, the first words out of her mouth were, "he's black! Look at how dark he is" I looked at her with a weird look on my face. She went on, "look at his hands, they are so dark" I told her it was fine, all babies were born with blue hands and feet. I was seeing him through mother's eyes. I saw nothing but perfection.
While we were introducing the brothers to Zachary, unbeknownst to us, my step-dad was in the hallway demanding the nurses take him and run tests. They refused. They said he was fine. My step-dad persisted and finally the nurses took him to give him a bath.
Time went by, and they didn't bring him back to us.
After what felt like an eternity, the doctor came in to inform us that they had noticed he was blue while bathing him, did a pulse ox test, and found his SATS to be low. He was placed under an oxygen hood.
No one knew what was wrong with him. We were told things like, "he was 3 weeks early, his lungs are immature" "he's a big boy, and big boys tend to have wetter lungs" "his lungs are wet, they'll dry out". They ran test after test. All were negative. They started him on antibiotics in case a pneumonia was missed.
Finally, an echocardiogram was performed, and our world turned upside down.
The important thing is, because of the pulse ox, they knew something was wrong, and he was put on oxygen right away.
Zachary was diagnosed with a congenital heart defect called Total Anomalous Pulmonary Venous Return and an Atrial Septal Defect. A complex, life threatening heart defect. The morning after he was diagnosed, he had open heart surgery.
Then thing was, there was nothing to indicate he had a CHD. No heart murmur, nothing. Just a low pulse ox. While we waited for the cardiologist to read the echo, we asked the pediatrician if she thought it was his heart. She said no, not at all because he didn't act like a baby with a CHD.
Fast forward six years. I was pregnant with my sixth child. I had several fetal echoes and was told that her pulmonary veins could be seen and looked great. I was told over and over that her heart looked great and there was nothing to indicate anything would be wrong.
When she was born she looked so great. She was breathing so well. I remember telling her, "you're such a good baby, not even grunting, you'll avoid a NICU stay!" Later in my room, Matt was holding her, I told him to cover her up, she looked cold. I look back and realize how silly that was.
Again, they took her for a bath, and didn't bring her back. After about an hour, Matt went to the nursery to find out what was going on. The nurse said she thought that Natalie looked dusky so did a pulse ox test. She had called in the pediatrician because her SATS were low. When the pediatrician got there, we told him about Zachary. He did a blood gas test, which came out bad. An echo was then ordered and it was discovered she had the same defect as her brother.
The interesting thing is how well she did. The reason babies stay in the hospital for so long after heart surgery is often because of feeding issues. Because of this they wanted to hold out as long as they could to give Natalie the chance to really learn how to eat in hopes that she wouldn't forget when she was able to eat again. She was hooked up to monitors and Matt and I commented on the fact that watching the monitors was like watching someone die.
She looked sooo good. And yet we watched and one day her respiration rate went up. The next her O2 SATS went down more. And still she looked good. She didn't look like a thing was wrong with her. Finally at six days old, because the monitors said so, the doctors said she needed her surgery that day. Still, nothing looked wrong.
TAPVR is so often missed at birth. The babies look fine. Unfortunately, many TAPVR babies pass away without being diagnosed.
I will never forget the nurse who decided to test Natalie. In my opinion, she is a huge reason my daughter is here today.
So, what is pulse oximetry testing and what's the big deal?
We've all seen a pulse ox test. It is the little red light they put on your finger when checking your vitals. They are measuring the amount of oxygen in your blood.
To do this test in a newborn, costs less than the cost of a bandaid. Hospitals crank the prices up and insurance doesn't have to pay for it.
New Jersey has now made pulse ox testing mandatory on newborns 24 hours old. This means insurance will have to cover this non invasive test. It doesn't mean that a parent can't deny it, though I'm not sure why they would.
In recent studies they have learned that about a third of one percent of babies tested at 24 hours old had false positive results.
A pulse ox test won't catch every CHD, but it will catch many.
I have been reading study after study to put in here, but I'll let you google it. Just google Pulse Ox screening newborn and you will find that 1 in 15,000 babies will be born with a critical CHD and half of those will die before a diagnosis is made.
People think that a CHD can be caught by listening to the heart. This is so wrong. My kids didn't present with a heart murmur. Many don't.
We screen our babies for things like hearing loss and PKU without giving it a second thought. It's just routine. The false positives from those tests are so much higher. Hearing tests cost much more than a pulse ox and while hearing loss is devastating, it isn't life threatening.
It is so important that we make this test mandatory. Insurance companies need to pay for this, and hospitals need to not jack up the price.
Babies die from detected CHDs, but how tragic that any baby should die from an undetected CHD, especially when a simple test could pick up a problem. No parent should have to experience this.
So, what can you do?
Write a letter to your state representative. Tell them how important this is.
Sign the petition that I've linked to on the side bar.
And most importantly, if you are pregnant, or ever get pregnant, please demand a pulse ox test on your baby at 24 hours of age.
Yes, this is long. But it's personal to me. Not a single day goes by that I don't thank God that my babies are still here. I know how easily it could be different. TAPVR is one of the top 5 defects that isn't detected at birth. I am just so, so thankful that people had the sense to perform a pulse ox on them.
The nurses and midwife then left the room in order for us to bond with him.
Our family came in.
When my mom saw him, the first words out of her mouth were, "he's black! Look at how dark he is" I looked at her with a weird look on my face. She went on, "look at his hands, they are so dark" I told her it was fine, all babies were born with blue hands and feet. I was seeing him through mother's eyes. I saw nothing but perfection.
While we were introducing the brothers to Zachary, unbeknownst to us, my step-dad was in the hallway demanding the nurses take him and run tests. They refused. They said he was fine. My step-dad persisted and finally the nurses took him to give him a bath.
Time went by, and they didn't bring him back to us.
After what felt like an eternity, the doctor came in to inform us that they had noticed he was blue while bathing him, did a pulse ox test, and found his SATS to be low. He was placed under an oxygen hood.
No one knew what was wrong with him. We were told things like, "he was 3 weeks early, his lungs are immature" "he's a big boy, and big boys tend to have wetter lungs" "his lungs are wet, they'll dry out". They ran test after test. All were negative. They started him on antibiotics in case a pneumonia was missed.
Finally, an echocardiogram was performed, and our world turned upside down.
The important thing is, because of the pulse ox, they knew something was wrong, and he was put on oxygen right away.
Zachary was diagnosed with a congenital heart defect called Total Anomalous Pulmonary Venous Return and an Atrial Septal Defect. A complex, life threatening heart defect. The morning after he was diagnosed, he had open heart surgery.
Then thing was, there was nothing to indicate he had a CHD. No heart murmur, nothing. Just a low pulse ox. While we waited for the cardiologist to read the echo, we asked the pediatrician if she thought it was his heart. She said no, not at all because he didn't act like a baby with a CHD.
Fast forward six years. I was pregnant with my sixth child. I had several fetal echoes and was told that her pulmonary veins could be seen and looked great. I was told over and over that her heart looked great and there was nothing to indicate anything would be wrong.
When she was born she looked so great. She was breathing so well. I remember telling her, "you're such a good baby, not even grunting, you'll avoid a NICU stay!" Later in my room, Matt was holding her, I told him to cover her up, she looked cold. I look back and realize how silly that was.
Again, they took her for a bath, and didn't bring her back. After about an hour, Matt went to the nursery to find out what was going on. The nurse said she thought that Natalie looked dusky so did a pulse ox test. She had called in the pediatrician because her SATS were low. When the pediatrician got there, we told him about Zachary. He did a blood gas test, which came out bad. An echo was then ordered and it was discovered she had the same defect as her brother.
The interesting thing is how well she did. The reason babies stay in the hospital for so long after heart surgery is often because of feeding issues. Because of this they wanted to hold out as long as they could to give Natalie the chance to really learn how to eat in hopes that she wouldn't forget when she was able to eat again. She was hooked up to monitors and Matt and I commented on the fact that watching the monitors was like watching someone die.
She looked sooo good. And yet we watched and one day her respiration rate went up. The next her O2 SATS went down more. And still she looked good. She didn't look like a thing was wrong with her. Finally at six days old, because the monitors said so, the doctors said she needed her surgery that day. Still, nothing looked wrong.
TAPVR is so often missed at birth. The babies look fine. Unfortunately, many TAPVR babies pass away without being diagnosed.
I will never forget the nurse who decided to test Natalie. In my opinion, she is a huge reason my daughter is here today.
So, what is pulse oximetry testing and what's the big deal?
We've all seen a pulse ox test. It is the little red light they put on your finger when checking your vitals. They are measuring the amount of oxygen in your blood.
To do this test in a newborn, costs less than the cost of a bandaid. Hospitals crank the prices up and insurance doesn't have to pay for it.
New Jersey has now made pulse ox testing mandatory on newborns 24 hours old. This means insurance will have to cover this non invasive test. It doesn't mean that a parent can't deny it, though I'm not sure why they would.
In recent studies they have learned that about a third of one percent of babies tested at 24 hours old had false positive results.
A pulse ox test won't catch every CHD, but it will catch many.
I have been reading study after study to put in here, but I'll let you google it. Just google Pulse Ox screening newborn and you will find that 1 in 15,000 babies will be born with a critical CHD and half of those will die before a diagnosis is made.
People think that a CHD can be caught by listening to the heart. This is so wrong. My kids didn't present with a heart murmur. Many don't.
We screen our babies for things like hearing loss and PKU without giving it a second thought. It's just routine. The false positives from those tests are so much higher. Hearing tests cost much more than a pulse ox and while hearing loss is devastating, it isn't life threatening.
It is so important that we make this test mandatory. Insurance companies need to pay for this, and hospitals need to not jack up the price.
Babies die from detected CHDs, but how tragic that any baby should die from an undetected CHD, especially when a simple test could pick up a problem. No parent should have to experience this.
So, what can you do?
Write a letter to your state representative. Tell them how important this is.
Sign the petition that I've linked to on the side bar.
And most importantly, if you are pregnant, or ever get pregnant, please demand a pulse ox test on your baby at 24 hours of age.
Yes, this is long. But it's personal to me. Not a single day goes by that I don't thank God that my babies are still here. I know how easily it could be different. TAPVR is one of the top 5 defects that isn't detected at birth. I am just so, so thankful that people had the sense to perform a pulse ox on them.
Saturday, June 4, 2011
Matthew's Surgery
I totally forgot to blog about Matthew's recent surgery. My dad has been galavantin around the world, and his recent comment on my status update reminded me that I should have updated him, and you.
In case you are new to my blog, Matthew is my eldest. He is 14. He was born with a congenital cataract which was removed at one month of age. Along with the cataract, his lens was removed. Keep in mind this was 14 years ago. His eye has some other issues and for reasons beyond our control, he went nearly blind in his right eye. By nearly blind I mean he can see shadows. I'm sure that, had he been born now, things would have turned out differently. We try not to think about that. We did the best we could. We saw an expert in the field and did all we could, 14 years ago.
Have I mentioned it was 14 years ago??
Anyway, due to the absence of a lens, he developed glaucoma in that eye.
Because he has almost zero vision in that eye, anything we do is just to keep him comfortable.
He has been fighting this for years now, and nothing we do seems to work.
The last time he saw the doctor, his pressure was an all time high, 48. Normal pressure is in the teens.
It was decided that we would try a laser surgery.
He has had this same exact surgery before. It brought his pressure down to the upper teens. A month later it was back to the 30s.
He uses 3 medications to try to keep the pressure down, but it obviously doesn't do too much.
The first time he had this surgery was pie.
This time was a different story.
The doctor told me Matthew would be out for the surgery, which we took to mean general anesthesia. Matthew was fine with that. This was surgery number 12 or 13 (I need to write them down so I have that info!!) and he is used to them gassing him to sleep, then starting the IV.
When we got to the pre-op holding area, they talked about starting an IV. Matthew was so nervous. We said we preferred he get the gas first. Then they explained that they would just be doing IV sedation this time around. No big deal, just the fear of the IV.
He did great and said it wasn't that bad. I was so glad they gave him lidocaine before doing it though.
They took him back, he remembers a bit, but not much.
It wasn't long and he was done.
By the time we got to the recovery room he was awake and loopy. It was hilarious, and we all laughed at him. How mean, huh? But, in our defense, he was so funny, and he laughed with us!
OK, so the next day, no pain. Surgery was on Tuesday and Friday we headed to Missouri to see my brother-in-law graduate grad school. Graduations was Saturday, and there was a tree outside that called way too hard to my boys to climb it.
Up they went. Matthew hung upside down, felt a "pop" and was in major pain. He said the pressure was terrible. We got home and he laid down and didn't want to move. We tried a cool compress, but the feeling of anything touching it was excruciating.
So here we are, middle of nowhere, Missouri, with no clue what to do. Oh, and that dad who was galavantin?? He's an ophthalmologist but was unreachable. Just our luck!
We gave him Tylenol throughout the weekend, and he was able to function. Oh, we also took it upon ourselves to increase his drops for pressure, because he said it was pressure pain. His eye also got very, very bloodshot after this. We knew it was supposed to get red, but it hadn't until that moment.
Monday finally came and we put a call into his doctor. Of course, we had to leave a message. The first call back said we needed to find an ophthalmologist and get him in asap.
Again, we were in the middle of nowhere!
As we started searching the phone book and trying to figure out what to do, his doctor called back.
We talked about everything and she told me what drops to increase to every other hour.
That did the trick and brought the pain down.
The white of his eye turned yellow and you could see every blood vessel, bright red.
He had pain until we got home and finally saw the doctor. A week after surgery.
She looked and said everything looked great. We have no idea what the "pop" could have been, or why the pain was suddenly so excruciating.
The big news is his pressure was down to 12.
This is great news, but I find it hard to get excited. The doctor says we will be cautiously optimistic. I just figure when we go back in a couple weeks, it will be creeping up again. I would LOVE to be surprised.
He continues to have pain off and on, which I don't understand. If it looks so good, why is it hurting him so much?
Also, something that is perplexing to me, that I didn't think about until after we left...Matthew has a thickened cornea, so they usually say the actual pressure is about 10 points lower. Does this mean his pressure is 0-2?? And is that bad? He keeps telling me his eye feels squishy. That freaks me out.
A danger of this surgery is doing too much of the laser and actually drying the eye up. I'm praying that isn't the case here!
So, time will tell. I think the pain is getting better every day. He continues to amaze me. My children are the strongest people I know. Matthew never, ever complains about all he has been through. I am so very, very proud of the man he is becoming.
In case you are new to my blog, Matthew is my eldest. He is 14. He was born with a congenital cataract which was removed at one month of age. Along with the cataract, his lens was removed. Keep in mind this was 14 years ago. His eye has some other issues and for reasons beyond our control, he went nearly blind in his right eye. By nearly blind I mean he can see shadows. I'm sure that, had he been born now, things would have turned out differently. We try not to think about that. We did the best we could. We saw an expert in the field and did all we could, 14 years ago.
Have I mentioned it was 14 years ago??
Anyway, due to the absence of a lens, he developed glaucoma in that eye.
Because he has almost zero vision in that eye, anything we do is just to keep him comfortable.
He has been fighting this for years now, and nothing we do seems to work.
The last time he saw the doctor, his pressure was an all time high, 48. Normal pressure is in the teens.
It was decided that we would try a laser surgery.
He has had this same exact surgery before. It brought his pressure down to the upper teens. A month later it was back to the 30s.
He uses 3 medications to try to keep the pressure down, but it obviously doesn't do too much.
The first time he had this surgery was pie.
This time was a different story.
The doctor told me Matthew would be out for the surgery, which we took to mean general anesthesia. Matthew was fine with that. This was surgery number 12 or 13 (I need to write them down so I have that info!!) and he is used to them gassing him to sleep, then starting the IV.
When we got to the pre-op holding area, they talked about starting an IV. Matthew was so nervous. We said we preferred he get the gas first. Then they explained that they would just be doing IV sedation this time around. No big deal, just the fear of the IV.
He did great and said it wasn't that bad. I was so glad they gave him lidocaine before doing it though.
They took him back, he remembers a bit, but not much.
It wasn't long and he was done.
By the time we got to the recovery room he was awake and loopy. It was hilarious, and we all laughed at him. How mean, huh? But, in our defense, he was so funny, and he laughed with us!
OK, so the next day, no pain. Surgery was on Tuesday and Friday we headed to Missouri to see my brother-in-law graduate grad school. Graduations was Saturday, and there was a tree outside that called way too hard to my boys to climb it.
Up they went. Matthew hung upside down, felt a "pop" and was in major pain. He said the pressure was terrible. We got home and he laid down and didn't want to move. We tried a cool compress, but the feeling of anything touching it was excruciating.
So here we are, middle of nowhere, Missouri, with no clue what to do. Oh, and that dad who was galavantin?? He's an ophthalmologist but was unreachable. Just our luck!
We gave him Tylenol throughout the weekend, and he was able to function. Oh, we also took it upon ourselves to increase his drops for pressure, because he said it was pressure pain. His eye also got very, very bloodshot after this. We knew it was supposed to get red, but it hadn't until that moment.
Monday finally came and we put a call into his doctor. Of course, we had to leave a message. The first call back said we needed to find an ophthalmologist and get him in asap.
Again, we were in the middle of nowhere!
As we started searching the phone book and trying to figure out what to do, his doctor called back.
We talked about everything and she told me what drops to increase to every other hour.
That did the trick and brought the pain down.
The white of his eye turned yellow and you could see every blood vessel, bright red.
He had pain until we got home and finally saw the doctor. A week after surgery.
She looked and said everything looked great. We have no idea what the "pop" could have been, or why the pain was suddenly so excruciating.
The big news is his pressure was down to 12.
This is great news, but I find it hard to get excited. The doctor says we will be cautiously optimistic. I just figure when we go back in a couple weeks, it will be creeping up again. I would LOVE to be surprised.
He continues to have pain off and on, which I don't understand. If it looks so good, why is it hurting him so much?
Also, something that is perplexing to me, that I didn't think about until after we left...Matthew has a thickened cornea, so they usually say the actual pressure is about 10 points lower. Does this mean his pressure is 0-2?? And is that bad? He keeps telling me his eye feels squishy. That freaks me out.
A danger of this surgery is doing too much of the laser and actually drying the eye up. I'm praying that isn't the case here!
So, time will tell. I think the pain is getting better every day. He continues to amaze me. My children are the strongest people I know. Matthew never, ever complains about all he has been through. I am so very, very proud of the man he is becoming.
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