We had day hospital today. It was a rough day for Avigayil (every time she turned around someone was taking blood or sticking a tube in her or holding her down for some test), but we got through it. The good news is that she is doing well and aside from her anemia she is ready for surgery. The bad news is they decided to push off the surgery until after they can do a CT. She is scheduled to have the CT on February 16th. It will also be under general anesthesia. If she is tolerating the anesthesia well they may do a broncoscopy at the same time. After that she will have the surgery, but we don't know yet when that will be.
The hard part now is keeping her healthy until the CT and surgery. We will have to be even more vigilant then we already are. The doctor called it giving her the "plastic bubble treatment". This is not easy with 4 other kids, not to mention 3 grandparents coming within the next week. IY"H (please G-d) we will be able to keep her healthy long enough to get through the next few weeks and everything will be behind us.
Wednesday, February 4, 2015
Sunday, February 1, 2015
Surgery
Avigayil needs to have surgery. She has to have a g-tube put in. A g-tube is a feeding tube placed directly into her stomach. For most children this is a small simple procedure. That will not be the case for Avigayil.
Her GI wanted to do a more complicated surgery at the same time called a fundoplacation. This would in effect stop her from vomiting - forever. Usually this is not done on children who are "neurologically intact" because they grow out of the reflux. The question in Avigayil's case was "Can we wait that long?" Her vomiting is currently on of the things that is keeping her from gaining weight. Since she is not gaining weight, her lungs can't grow and heal. Since her lungs aren't healing more energy is going into breathing and she can't gain weight. You get the idea.
The problem is that the surgery is permanent and irreversible. Also, not all the doctors agree that it will help her.
To further complicate matters, Avigayil is not a candidate for sedation. This means that no matter what we decide It will be a big surgery. She will need general anesthesia and intubation. What is usually a small procedure is now a big deal.
So we did an upper GI study to help us decide what to do. B"H it came back fine and now she will only have the smaller procedure. However, it will not be simple. We are going for tests on Wednesday and if everything checks out hope to do the surgery on Monday.
While she is under anesthesia, if she responds well, they hope to do a few other small procedures as well.
We really don't know what to expect. A lot will depend on how she reacts to the anesthesia. In theory, it could still be outpatient, however they told us that they will reserve her an ICU bed just in case. Once intubated she may have a very hard time coming off the ventilator. Please keep her in your thoughts and prayers.
Her GI wanted to do a more complicated surgery at the same time called a fundoplacation. This would in effect stop her from vomiting - forever. Usually this is not done on children who are "neurologically intact" because they grow out of the reflux. The question in Avigayil's case was "Can we wait that long?" Her vomiting is currently on of the things that is keeping her from gaining weight. Since she is not gaining weight, her lungs can't grow and heal. Since her lungs aren't healing more energy is going into breathing and she can't gain weight. You get the idea.
The problem is that the surgery is permanent and irreversible. Also, not all the doctors agree that it will help her.
To further complicate matters, Avigayil is not a candidate for sedation. This means that no matter what we decide It will be a big surgery. She will need general anesthesia and intubation. What is usually a small procedure is now a big deal.
So we did an upper GI study to help us decide what to do. B"H it came back fine and now she will only have the smaller procedure. However, it will not be simple. We are going for tests on Wednesday and if everything checks out hope to do the surgery on Monday.
While she is under anesthesia, if she responds well, they hope to do a few other small procedures as well.
We really don't know what to expect. A lot will depend on how she reacts to the anesthesia. In theory, it could still be outpatient, however they told us that they will reserve her an ICU bed just in case. Once intubated she may have a very hard time coming off the ventilator. Please keep her in your thoughts and prayers.
Monday, January 5, 2015
In Celebration of Blood Donors
You may not know this but January is Blood Donor Month. Growing up I remember my parents donating blood regularly. I always had an awareness of blood donation but it wasn't until Avigayil was born that the importance really hit home.
Avigayil has a rare blood type that runs in my family. Since I had just had surgery and had bleeding complications I am not eligible to donate blood for a long time. So when she needed several transfusions in the first few months of life it was from anonymous blood donors.
Most people don't think about it. Many people don't even do it. However, when you lie down on that bed and they take blood from your arm, you are saving a life. I will never know whose blood went to our daughter, so to the selfless people who give blood, I say "Thank you." On behalf of every parent who's child has received this precious gift I say thank you. You may get a cookie and juice, but you deserve a medal!
We are currently gearing up for Avigayil's first surgery. She will have a g-tube placed in her stomach and my have a more serious stomach surgery as well (more on this soon). I am still not eligible to give for my daughter and so, yet again, we will be relying on the blood of strangers.
I want to take this opportunity to encourage everyone reading this to PLEASE go out this month and give blood. It is fairly simple and usually takes about 20 minutes (and you get a cookie afterwards!). This is especial true if you have a rare blood type or are O- (the universal donor). You will never know the impact you have on someone's life with this simple act, but I promise you this. Whoever's life you touch, will be touched in the biggest and most important way possible. You will be a hero. You will save a life.
Please contact MADA, The Red Cross, or your local hospital for more information on how and when you can give blood near you.
Avigayil has a rare blood type that runs in my family. Since I had just had surgery and had bleeding complications I am not eligible to donate blood for a long time. So when she needed several transfusions in the first few months of life it was from anonymous blood donors.
Most people don't think about it. Many people don't even do it. However, when you lie down on that bed and they take blood from your arm, you are saving a life. I will never know whose blood went to our daughter, so to the selfless people who give blood, I say "Thank you." On behalf of every parent who's child has received this precious gift I say thank you. You may get a cookie and juice, but you deserve a medal!
We are currently gearing up for Avigayil's first surgery. She will have a g-tube placed in her stomach and my have a more serious stomach surgery as well (more on this soon). I am still not eligible to give for my daughter and so, yet again, we will be relying on the blood of strangers.
I want to take this opportunity to encourage everyone reading this to PLEASE go out this month and give blood. It is fairly simple and usually takes about 20 minutes (and you get a cookie afterwards!). This is especial true if you have a rare blood type or are O- (the universal donor). You will never know the impact you have on someone's life with this simple act, but I promise you this. Whoever's life you touch, will be touched in the biggest and most important way possible. You will be a hero. You will save a life.
Please contact MADA, The Red Cross, or your local hospital for more information on how and when you can give blood near you.
Tuesday, December 23, 2014
Sunday, December 21, 2014
Round And Round We Go...
Back to the hospital. Avigayil was having trouble keeping her o2 sats up so we are back for another overnight stay.
Wednesday, December 17, 2014
Home Again
We are home again, B"H. The diuretics did not work as we had hoped but restarting the steroids did. She is breathing much easier.
We did get a chance to see how well she knows what is going on. When the doctors came to take her blood she started to cry, even before they started. She also took the doctor's glove and threw it! That's my girl, it's that determination that is keeping her going.
The good news is that she has started to eat!! We are working with the feeding clinic and have started trying to get her to eat by mouth again. The hope is that we will at one point be able to remove the NG tube. So far, she is doing well with it - when she is not over tired or having trouble breathing.
We did get a chance to see how well she knows what is going on. When the doctors came to take her blood she started to cry, even before they started. She also took the doctor's glove and threw it! That's my girl, it's that determination that is keeping her going.
The good news is that she has started to eat!! We are working with the feeding clinic and have started trying to get her to eat by mouth again. The hope is that we will at one point be able to remove the NG tube. So far, she is doing well with it - when she is not over tired or having trouble breathing.
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