Well, not sure exactly what happened with Torah's Sleep Study last Thursday but here is what I do know. We got to TCH to check in around 1pm to have her admitted (so that insurance would pay for everything), and even though our Doctor herself called 'bed placement' to reserve a bed - no bed was reserved and of course the hospital was packed that day. Around 4 pm they finally got us up to the floor and into a room where we waited till 8:30 when we were taken down to the 'sleep lab' for the night. Torah tolerated them hooking her up for the sleep study and also she had an EEG done as well, so they had to hook all the little probes up to her head to monitor her brain (they wanted to know if she was having seizures while she slept). The shut the lights off at 9:30 and for the next two hours . . . Torah screamed and cried (I felt bad for the little boy next door who was having his study done at the same time). I crashed and slept like a rock and come 6 AM they were waking me up and un-hooking Torah. The gal that monitored Torah all night said that she did destat down to 63 % and they did have to put her on oxygen just to keep her above 88 %.
I thought that we were going to get to go home Friday afternoon, but the doctors were just not happy with what had happened and wanted to figure out why or what was causing her oxygen levels to drop so much. So, Friday night and Saturday night they put her on 0.5 liters of oxygen and watched to see if she would drop. We also met with the ENT doctors and a pulmonologist to see if they could come up with a diagnosis or a solution to the problem. The ENT doctors thought maybe it was her tonsils - and even after sticking one of their cameras down her nose to see if they could find anything - all they could come up with was her tonsils were bigger than they should be, but they do not think that they were the problem and so they did not want to go in a remove them just yet. The Pulmonologist listen to me talk about all the 'asthma' related issues that Torah has dealt with since birth and did not diagnosis her with asthma but said that she defiantly has asthmatic related issues . . . so he prescribe an inhaler for her and I am hoping that it will help break up the stuff in her throat and also keep her from wheezing at night. I have not heard the official results from the doctors about the Sleep study or the EEG . . . will try and post when I do hear!
Sunday morning before we left, Torah had a type of 'swallow study' done to see if she was refluxing and if her nissen had come undone (was done back in Jan 08') - it is where they take part of the stomach and wrap it around her esophagus to tighten it up and keep her food from coming up if she does reflux (or throw it up) and all that is to keep her from aspirating any food into her lungs and getting pneumonia. According to what the radiologist told me - her nissen has loosen and is not doing what it was intended for so we were referred onto the surgeon that put her g-tube and nissen in.
Now comes our BIG decision:
The Surgeon called me this morning to give me our options. He still wants to see Torah before making a finally decision, but here are our 3 options (all 3 have good and bad):
Option 1: Do Nothing! Good part is maybe her reflux will go away (he told me that she only had the reflux because when they tighten the esophagus it keeps air and gases from getting out - otherwise know as burping). The bad part would be the reflux stayed around (like it still currently is) and she retches - making food come up into her throat - and then she aspirates it into her lungs, gets pneumonia and gets hospitalized.
Option 2: Revise the Nissen - all the surgeon would do would go back in through her belly button and laparoscopically redo the nissen. Good part is really not much except giving us more time to figure out if we want or do not want to do Option 3. Bad part - she keeps struggling with reflux like she is right now and maybe in a two plus years we are right back at we are right now.
Option 3: Bypass the stomach. He tried explaining it to me over the phone telling me that it would make so much more since if I saw a drawing . . . but here is pretty much what he told me: They would go in and disconnect her stomach from her esophagus and attach her small intestine to her esophagus. To me it sounds like one of the 'stomach by-pass' surgeries that they do to help overweight people. Good part would be that she would never struggle with reflux ever again. Bad part is it is very permanent and we could never go back - this part is bad if one day Torah decides to finally eat food through her mouth. The doctor told me that she could have some fluid and a little food, but she would never be able to eat the calories that she needs and would have to be supplemented by the g-tube. I wonder about the g-tube though too since it feeds her directly into her stomach right now . . . what would they do if we did choose Option 3??
I have a lot of questions right now and I know I need to do my homework plus talk to as many people as possible before making this decision. We can schedule an appointment pretty much any time to meet with the surgeon and then he would go from there with whatever we decide. This is really when I wish we had a "Owners manual" to help us figure out the right choice with her or even to tell us what she might be like in 5-10 years from now . . . but since we don't I will turn to God once again and hope that he will help Bob and I make the right choice.
I thought that we were going to get to go home Friday afternoon, but the doctors were just not happy with what had happened and wanted to figure out why or what was causing her oxygen levels to drop so much. So, Friday night and Saturday night they put her on 0.5 liters of oxygen and watched to see if she would drop. We also met with the ENT doctors and a pulmonologist to see if they could come up with a diagnosis or a solution to the problem. The ENT doctors thought maybe it was her tonsils - and even after sticking one of their cameras down her nose to see if they could find anything - all they could come up with was her tonsils were bigger than they should be, but they do not think that they were the problem and so they did not want to go in a remove them just yet. The Pulmonologist listen to me talk about all the 'asthma' related issues that Torah has dealt with since birth and did not diagnosis her with asthma but said that she defiantly has asthmatic related issues . . . so he prescribe an inhaler for her and I am hoping that it will help break up the stuff in her throat and also keep her from wheezing at night. I have not heard the official results from the doctors about the Sleep study or the EEG . . . will try and post when I do hear!
Sunday morning before we left, Torah had a type of 'swallow study' done to see if she was refluxing and if her nissen had come undone (was done back in Jan 08') - it is where they take part of the stomach and wrap it around her esophagus to tighten it up and keep her food from coming up if she does reflux (or throw it up) and all that is to keep her from aspirating any food into her lungs and getting pneumonia. According to what the radiologist told me - her nissen has loosen and is not doing what it was intended for so we were referred onto the surgeon that put her g-tube and nissen in.
Now comes our BIG decision:
The Surgeon called me this morning to give me our options. He still wants to see Torah before making a finally decision, but here are our 3 options (all 3 have good and bad):
Option 1: Do Nothing! Good part is maybe her reflux will go away (he told me that she only had the reflux because when they tighten the esophagus it keeps air and gases from getting out - otherwise know as burping). The bad part would be the reflux stayed around (like it still currently is) and she retches - making food come up into her throat - and then she aspirates it into her lungs, gets pneumonia and gets hospitalized.
Option 2: Revise the Nissen - all the surgeon would do would go back in through her belly button and laparoscopically redo the nissen. Good part is really not much except giving us more time to figure out if we want or do not want to do Option 3. Bad part - she keeps struggling with reflux like she is right now and maybe in a two plus years we are right back at we are right now.
Option 3: Bypass the stomach. He tried explaining it to me over the phone telling me that it would make so much more since if I saw a drawing . . . but here is pretty much what he told me: They would go in and disconnect her stomach from her esophagus and attach her small intestine to her esophagus. To me it sounds like one of the 'stomach by-pass' surgeries that they do to help overweight people. Good part would be that she would never struggle with reflux ever again. Bad part is it is very permanent and we could never go back - this part is bad if one day Torah decides to finally eat food through her mouth. The doctor told me that she could have some fluid and a little food, but she would never be able to eat the calories that she needs and would have to be supplemented by the g-tube. I wonder about the g-tube though too since it feeds her directly into her stomach right now . . . what would they do if we did choose Option 3??
I have a lot of questions right now and I know I need to do my homework plus talk to as many people as possible before making this decision. We can schedule an appointment pretty much any time to meet with the surgeon and then he would go from there with whatever we decide. This is really when I wish we had a "Owners manual" to help us figure out the right choice with her or even to tell us what she might be like in 5-10 years from now . . . but since we don't I will turn to God once again and hope that he will help Bob and I make the right choice.
