So THIS stinking cutie is having surgery on April 9th.
Back in January, Payzlee had a swallow study done. She had to swallow barium in different forms of liquids and foods and also with various consistencies. Even with the thickest thickener, Payzlee was aspirating, meaning she was swallowing ALL liquids and thin solids into her lungs. Because of this we were admitted to the hospital for an emergency NG Tube placement (nasal gastric tube or feeding tube) Payzlee is not allowed to have liquids by mouth or thin solids like ice cream, apple sauce ect. She has a Gtube (gastric feeding tube) in her belly now. You can see it in the picture above. She has all of her liquids by feeding tube.
We met with the ENT about a month ago and he told me what they plan to do. On March 25th we have a swallow study for Payzlee, exactly like the one that showed she couldn't have liquids, except this one is with ALL solid food. We believe she is aspirating on ALL FOODS not just thin solids and liquids. If this is the case, Payzlee will no longer be able to have any food or drink by mouth. April 2nd we go in to have an upper gi done. Basically it is a barium drink that she will drink and they will photograph her anatomy; everything the barium touches. mouth, throat, esophagus, lungs, stomach, and intestines. They are looking to see if she has malformations, abnormalities, if things are too small, too big, something obstructing, and a number of other things. On April 8th we will go in for clinic the day before surgery. We will meet with 5 or 6 drs (I forget) and it will be a MINIMUM of 4 hours long for this lovely appointment. They will go over EVERYTHING that will happen the next day. From what I know, (I will be able to fill in more details after the 8th) they will be putting Payzlee under and the ENT is going to check out her anatomy. He especially wants to look at her vocal cords. They will have her under a lighter sedation so that they can make her cough. When she coughs, they will be able to see her vocal cords. There should be a dam by your vocal cords that keeps fluids from going into your lungs. They want to know if it's intact and formed right or if it is more of a cup, not there, or is malformed in any way. He will also look at anything he sees on the upper gi. If he sees something that could be causing her issues he will look with the camera at that particular spot to see what it may be and if it can or should be fixed. After he is done, a pulmonologist will go in, put fluids into her lungs (I know freaking scary right? I gasp every time I think about it) and then he will suck the fluids back out. He is checking the health of her lungs. Because she had been aspirating for so long, her lungs more than likely are not in the best shape. The fact that she hasn't had infections in her lungs show that on the outside everything appears to be fine with her lungs, however, she could have bacteria growing in them or infection in them. By injecting fluid and then pulling it back out, the dr is hoping to see exactly how well her lungs are doing. Aspirating the amount of fluids Payzlee has been, makes her more susceptible to lung issues like pneumonia and bronchitis so we have to steer clear of people when colds come around. After that dr is done, her GI will step in and do another scope on her. Because she is still having GI issues this is important to do. He will be taking tissue samples from her throat, esophagus, stomach, and intestine I believe. They will be able to tell if there is inflammation or EoE like what Blake has. They told me this is an in and out procedure normally, but they told me to plan on packing a hospital bag. They said that if the ENT does find something, he may fix it and if that is the case we will stay. But also if her oxygen drops at all they will keep her overnight. This is a scary thing for us. PLEASE keep us in your prayers. Shaun will not be able to get off work to go to this surgery with me. I have an AMAZING friend who is helping me with the kids that day but Shaun does not have any sick days and vacation days don't kick in until after this surgery so I will be going alone. Anyone who knows me well knows I don't do surgeries very well. Blake has stopped breathing while under before so I don't handle surgery let alone being without my husband during a surgery. I will keep everyone updated and let everyone know what else I find out on the 8th.
Now for a few more pics of our Beasty!!! She's so cute when she sleeps!!!!
Shaun and I have the most perfect family. Our wedding song is Keeper of the Stars by Tracy Byrd and it says in it, "I hold everything, when I hold you in my arms. And I've got all I'll ever need, thanks to the keeper of the stars." It doesn't matter which member of my family I hold but when I hold them, I know all is right, and all WILL BE right, and I truly have everything in the world right there in my arms.
Back in January, Payzlee had a swallow study done. She had to swallow barium in different forms of liquids and foods and also with various consistencies. Even with the thickest thickener, Payzlee was aspirating, meaning she was swallowing ALL liquids and thin solids into her lungs. Because of this we were admitted to the hospital for an emergency NG Tube placement (nasal gastric tube or feeding tube) Payzlee is not allowed to have liquids by mouth or thin solids like ice cream, apple sauce ect. She has a Gtube (gastric feeding tube) in her belly now. You can see it in the picture above. She has all of her liquids by feeding tube.
We met with the ENT about a month ago and he told me what they plan to do. On March 25th we have a swallow study for Payzlee, exactly like the one that showed she couldn't have liquids, except this one is with ALL solid food. We believe she is aspirating on ALL FOODS not just thin solids and liquids. If this is the case, Payzlee will no longer be able to have any food or drink by mouth. April 2nd we go in to have an upper gi done. Basically it is a barium drink that she will drink and they will photograph her anatomy; everything the barium touches. mouth, throat, esophagus, lungs, stomach, and intestines. They are looking to see if she has malformations, abnormalities, if things are too small, too big, something obstructing, and a number of other things. On April 8th we will go in for clinic the day before surgery. We will meet with 5 or 6 drs (I forget) and it will be a MINIMUM of 4 hours long for this lovely appointment. They will go over EVERYTHING that will happen the next day. From what I know, (I will be able to fill in more details after the 8th) they will be putting Payzlee under and the ENT is going to check out her anatomy. He especially wants to look at her vocal cords. They will have her under a lighter sedation so that they can make her cough. When she coughs, they will be able to see her vocal cords. There should be a dam by your vocal cords that keeps fluids from going into your lungs. They want to know if it's intact and formed right or if it is more of a cup, not there, or is malformed in any way. He will also look at anything he sees on the upper gi. If he sees something that could be causing her issues he will look with the camera at that particular spot to see what it may be and if it can or should be fixed. After he is done, a pulmonologist will go in, put fluids into her lungs (I know freaking scary right? I gasp every time I think about it) and then he will suck the fluids back out. He is checking the health of her lungs. Because she had been aspirating for so long, her lungs more than likely are not in the best shape. The fact that she hasn't had infections in her lungs show that on the outside everything appears to be fine with her lungs, however, she could have bacteria growing in them or infection in them. By injecting fluid and then pulling it back out, the dr is hoping to see exactly how well her lungs are doing. Aspirating the amount of fluids Payzlee has been, makes her more susceptible to lung issues like pneumonia and bronchitis so we have to steer clear of people when colds come around. After that dr is done, her GI will step in and do another scope on her. Because she is still having GI issues this is important to do. He will be taking tissue samples from her throat, esophagus, stomach, and intestine I believe. They will be able to tell if there is inflammation or EoE like what Blake has. They told me this is an in and out procedure normally, but they told me to plan on packing a hospital bag. They said that if the ENT does find something, he may fix it and if that is the case we will stay. But also if her oxygen drops at all they will keep her overnight. This is a scary thing for us. PLEASE keep us in your prayers. Shaun will not be able to get off work to go to this surgery with me. I have an AMAZING friend who is helping me with the kids that day but Shaun does not have any sick days and vacation days don't kick in until after this surgery so I will be going alone. Anyone who knows me well knows I don't do surgeries very well. Blake has stopped breathing while under before so I don't handle surgery let alone being without my husband during a surgery. I will keep everyone updated and let everyone know what else I find out on the 8th.
Now for a few more pics of our Beasty!!! She's so cute when she sleeps!!!!
Shaun and I have the most perfect family. Our wedding song is Keeper of the Stars by Tracy Byrd and it says in it, "I hold everything, when I hold you in my arms. And I've got all I'll ever need, thanks to the keeper of the stars." It doesn't matter which member of my family I hold but when I hold them, I know all is right, and all WILL BE right, and I truly have everything in the world right there in my arms.
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