So we are in the ER. It looks like Avigayil has pneumonia and RSV. RSV is a respiratory virus that is very dangerous for babies with breathing problems. Please keep her in your teffilos. I will try to update when possible.
Wednesday, October 28, 2015
Tuesday, October 27, 2015
Welcome to Winter
So, Sunday in Israel was the first day of winter. We changed our clocks and the weather even decided to get cold and rainy. So Avigayil had to celebrate. By getting sick. Really sick. Hopefully its just a respiratory virus, but she has been having a lot of trouble breathing. We have increased the flow (pressure) on her machine to the highest level it has ever been. She is also on massive amounts of steroids, all in a bid to keep her from her first hospitalization of the season.
In other news, we went to the burn clinic today (up to 6 hospital visits in 11 days) and Avigayil's arm is doing much better. Almost all of her skin has grown back and she will be getting OT for flexibility. The doctors are very pleased.
Tuesday, October 20, 2015
As I was saying
So we went to the ER tonight. Again. This was our third trip to the hospital this week. Avigayil pulled out her G-tube (feeding tube). She now has a temporary tube in place and we will talk to the gastro dept tomorrow to see when they can place a regular G-tube. That means trip four and Sunday's appointment at the burn clinic will be a record of 5 hospital trips in 9 days. Go Team Shore!
How to Know You Spend Too Much Time in the Hospital
So the good news is that Avigayil's physical therapy is working! She was able to climb and stood on a therapy step on Friday. The better news is that she did it to reach some soup because she wanted to eat (by mouth!). The bad news is that she pulled the bowl of hot soup down on herself and now has 2nd degree burns. We ended up in an ambulance back to the hospital Friday night.
We saw the plastic surgeon yesterday and they are optimistic. The said that they feel that most of the skin will grown back within a week and then she will go for OT. They also do not think there will be scaring. She is currently in a bit of pain but they don't think there will be any permanent damage.
So, in light of our crazy situation, I present you with ways to tell you spend too much time in the hospital:
You are calmer then the medics in the ambulance.
When you show up at the ER everyone knows your name and welcomes your with hugs.
The receptionist no longer asks for your information or ID numbers, just if she is hear for the same problem as last time.
You get to skip the line straight to triage.
While the nurse types in your baby's current issues, you take all her sats by yourself.
The nurse then says "you can go to your usual bed."
You don't need the nurses to show you where things are, you just get them yourself.
They nurses know your baby's medications and doses by heart.
You no longer need to give the doctors a medical history when you are admitted.
You know every staff member by name from the doctors to the janitors.
The nurses aide knows just how your baby like her bath and what makes her smile.
She has a favorite hospital clown and everyone knows it.
The x-ray tech says "Hey, it looks better than last time!"
You get a staff discount at the coffee stand.
Every respiratory therapist in the hospital has worked on your baby....more than once.
The medical receptionists know your voice on the phone and some of them even recognize your number on the caller ID.
Somehow other parents just know to ask you where the coffee cups are kept and what the code is to the linen closet.
No one gets upset when you silence the monitor alarms of use the suction without permission.
You know the code to get an outside line on the hospital telephones.
You know which elevators to use at what times to get where you want to go fastest and you use all the staff shortcuts as well.
Your diaper bag has the essentials for an overnight stay in it all the time, just in case.
You have the hospital menu memorized and know what to expect every day of the week.
You have the staff schedules memorized and notice when someone takes an unusual day off.
The hospital staff whatsapps about you to each other.
When you run into someone in the hallway they say "I heard you where here."
Staff from other departments come by just to say hello.
We saw the plastic surgeon yesterday and they are optimistic. The said that they feel that most of the skin will grown back within a week and then she will go for OT. They also do not think there will be scaring. She is currently in a bit of pain but they don't think there will be any permanent damage.
So, in light of our crazy situation, I present you with ways to tell you spend too much time in the hospital:
You are calmer then the medics in the ambulance.
When you show up at the ER everyone knows your name and welcomes your with hugs.
The receptionist no longer asks for your information or ID numbers, just if she is hear for the same problem as last time.
You get to skip the line straight to triage.
While the nurse types in your baby's current issues, you take all her sats by yourself.
The nurse then says "you can go to your usual bed."
You don't need the nurses to show you where things are, you just get them yourself.
They nurses know your baby's medications and doses by heart.
You no longer need to give the doctors a medical history when you are admitted.
You know every staff member by name from the doctors to the janitors.
The nurses aide knows just how your baby like her bath and what makes her smile.
She has a favorite hospital clown and everyone knows it.
The x-ray tech says "Hey, it looks better than last time!"
You get a staff discount at the coffee stand.
Every respiratory therapist in the hospital has worked on your baby....more than once.
The medical receptionists know your voice on the phone and some of them even recognize your number on the caller ID.
Somehow other parents just know to ask you where the coffee cups are kept and what the code is to the linen closet.
No one gets upset when you silence the monitor alarms of use the suction without permission.
You know the code to get an outside line on the hospital telephones.
You know which elevators to use at what times to get where you want to go fastest and you use all the staff shortcuts as well.
Your diaper bag has the essentials for an overnight stay in it all the time, just in case.
You have the hospital menu memorized and know what to expect every day of the week.
You have the staff schedules memorized and notice when someone takes an unusual day off.
The hospital staff whatsapps about you to each other.
When you run into someone in the hallway they say "I heard you where here."
Staff from other departments come by just to say hello.
Friday, September 18, 2015
The Long Awaited Update
I apologize. I know many of you have been waiting for an update. I have been meaning to post for a while, but it was a crazy summer with the kids home and it simply got away from me. So here it is.
Avigayil has been improving. After a long summer with little progress, she mad a sudden leap. For a few weeks this summer she even went without her breathing machine or oxygen. It was so nice. She was able to crawl around the house (until now she was only able to crawl around one side of the living room because her tubes wouldn't reach.) We took her to the zoo and to the park. She had a great time.
Here she is at the park without anything on her face (her cheeks are still puffy from all the steroids).
It was nice to have a few weeks off completely. However, Avigayil was getting very tired from the effort and her last blood tests showed that her CO2 was too high. She is now back on the machine overnight and for several hours during the day. I try to do it during naps if she sleeps long enough so that she can still move around freely. When we go out she is usually ok, but if she gets too hot or too cold or too tired she has difficulty breathing and requires O2.
In addition, she lost weight this past month. I believe that it is from the increased physical activity and the exertion of breathing without support.
The good news is that she is still spending a good part of the day breathing on her own. She is spending the time exploring the house and getting into everything that she could never reach before. This means that we are going into the winter with a higher baseline then before.
She has already had a few viruses and now she has strep. We are hoping that this winter will be easier then her first one.
She is also moving ahead in her physical therapy. Avigayil crawls and can now pull up to stand. She is having difficulty with walking because of her low muscle tone, but we are working on it.
We are also hoping to soon start feeding and speech therapy. This will help her to learn to eat by mouth.
We are in the middle of the holidays so things are still pretty hectic. I am hoping that when we get back to a regular schedule after sukkos I will be able to post more regularly. Thank you everyone who has been thinking and and praying for her. Our hope is that this year will bring a lot of progress and healing, not just for our daughter but for all premature and medically fragile children.
Shana Tova.
Avigayil has been improving. After a long summer with little progress, she mad a sudden leap. For a few weeks this summer she even went without her breathing machine or oxygen. It was so nice. She was able to crawl around the house (until now she was only able to crawl around one side of the living room because her tubes wouldn't reach.) We took her to the zoo and to the park. She had a great time.
Here she is at the park without anything on her face (her cheeks are still puffy from all the steroids).
It was nice to have a few weeks off completely. However, Avigayil was getting very tired from the effort and her last blood tests showed that her CO2 was too high. She is now back on the machine overnight and for several hours during the day. I try to do it during naps if she sleeps long enough so that she can still move around freely. When we go out she is usually ok, but if she gets too hot or too cold or too tired she has difficulty breathing and requires O2.
In addition, she lost weight this past month. I believe that it is from the increased physical activity and the exertion of breathing without support.
The good news is that she is still spending a good part of the day breathing on her own. She is spending the time exploring the house and getting into everything that she could never reach before. This means that we are going into the winter with a higher baseline then before.
She has already had a few viruses and now she has strep. We are hoping that this winter will be easier then her first one.
She is also moving ahead in her physical therapy. Avigayil crawls and can now pull up to stand. She is having difficulty with walking because of her low muscle tone, but we are working on it.
We are also hoping to soon start feeding and speech therapy. This will help her to learn to eat by mouth.
We are in the middle of the holidays so things are still pretty hectic. I am hoping that when we get back to a regular schedule after sukkos I will be able to post more regularly. Thank you everyone who has been thinking and and praying for her. Our hope is that this year will bring a lot of progress and healing, not just for our daughter but for all premature and medically fragile children.
Shana Tova.
Thursday, July 2, 2015
Take a Moment to Breathe
Sha'are Zedek just opened a new children's hospital. It is AMAZING!! (More on this later) Today they are asking for our help to add equipment.
I want you to try something. Hold your breath. Keep holding. Say for 60 seconds. Now let go and feel your lungs fill up again. It's a relief right? Every day you breath over 20,000 times. And you do it without thinking. That is, until you can't do it.
The scariest thing is the world is not death. It's the fear that your child might die in front of you. Every breath is a struggle for Avigayil. Every breath is a gift. For her entire life she has been dependent on a Vapotherm machine. It is her literal life line. She used the hospital's machines and at home she uses a home version of the machine. Without the Vapotherm, Avigayil would not be able to breathe her 20,000 breaths. She is not the only one.
Sha'are Zedek is running a campaign to raise money to buy a new vapotherm. Below is the link and flier for the Campaign. I urge all of you to take a minute to read the information. If you can help, even with just a few shekels (or dollars) please consider it. Please also pass this on to anyone who might help. I can think of few things as worthy of tzadaka as helping a child breath.
http://www.give2gether.com/projects/Shaare-Zedek-Medical-Center-Jerusalem-Breathe/
I want you to try something. Hold your breath. Keep holding. Say for 60 seconds. Now let go and feel your lungs fill up again. It's a relief right? Every day you breath over 20,000 times. And you do it without thinking. That is, until you can't do it.
The scariest thing is the world is not death. It's the fear that your child might die in front of you. Every breath is a struggle for Avigayil. Every breath is a gift. For her entire life she has been dependent on a Vapotherm machine. It is her literal life line. She used the hospital's machines and at home she uses a home version of the machine. Without the Vapotherm, Avigayil would not be able to breathe her 20,000 breaths. She is not the only one.
Sha'are Zedek is running a campaign to raise money to buy a new vapotherm. Below is the link and flier for the Campaign. I urge all of you to take a minute to read the information. If you can help, even with just a few shekels (or dollars) please consider it. Please also pass this on to anyone who might help. I can think of few things as worthy of tzadaka as helping a child breath.
http://www.give2gether.com/projects/Shaare-Zedek-Medical-Center-Jerusalem-Breathe/
PS. See if you can spot Avigayil in the video!
The Story
B"H Avigayil is recovering nicely and in general back to herself. There is a part of the story that I did not share and, in fact, didn't even know part of, until she was discharged. Avigayil was saved from surgery at literally the last possible moment.
Once the test confirmed that Avigayil's stomach was not where is should have been, the usual thing to do was race into emergency surgery. The problem is that Avigayil is an anesthesia risk. This means that there are real and serious risks in giving her general anesthesia (as the last time showed with her 2 week intensive care stay). In Avigayil's case surgery should be avoided whenever possible. On the way to surgery, the surgeon had an idea. It had never been tried before, but it was worth a shot.
They took Avigayil to the angio lab. The plan was to use the guided imagery placed a wire through the whole from the PEG and tried to pull her stomach back into place. After several attempts it was still not working. There is a limited amount of time that the PEG can be out. Finally the surgeon called the OR and told them to prep a room for her they where going to try one last time and then head to the OR. Everyone was getting ready. Then, SUCCESS!! Everything slipped into place and they were able to complete the procedure.
The skill of everyone involved and they willingness to think outside of the box and try something new is what saved her. It saved her from surgery and from all of the likely complications she almost certainly would have had.
Thank you Doctors.
Thank you Sha'arie Zedek.
Thank you Hashem.
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