Yesterday we received some results from the endoscopy that Peyton had last week. The nurse practitioner from the Gastroenterologist (GI doc from now on!!) called me with some information. Whatever samples they took during the procedure indicated that she is definitely having reflux issues again. She's been on Prevacid since about November, but the dose was doubled a few weeks ago. She's also been on Zantac for a month or two. Even still, she's showing that reflux is a problem. So, to try to help the situation, the doctor has changed her from 15 mg of Prevacid twice a day to 20 mg of Nexium once a day. We'll also take her off the Zantac in a couple weeks. It takes a couple weeks for the Nexium to kick in, so the Zantac will cover her during the transition.
The results of bloodwork done showed that her hemoglobin and hematocrit levels are low, but they are at least consistent with where they've been over the past few months. Thankfully not so low as to require a transfusion. I guess it was getting pretty close a couple months ago. Thank you God for sparing her from that! She's not had one yet and hopefully doesn't ever!
In addition, her iron is low. Normal is between 50-170. Hers was 14. She's now taking iron to help that.
As I mentioned in the last post, the endoscopy showed that her Nissen Fundoplication surgery that was done in September 2009 has come undone. I'm not sure if it's all the way undone or just very relaxed so as to be completely non-functioning. I don't suppose it matters much since it's not functioning either way! This surgery was to prevent reflux and the vomiting that was so horrible at that time. She's also aspirating (secretions going into her lungs and not down her esophagus). Presumably, if she's refluxing, then what goes up has the potential to also go down the wrong way. This could be dangerous for her. I emailed the physician's assistant in the surgeon's office last week regarding this because I wanted to know what they would want to do for Peyton. On the one hand, I don't want to put her through another Nissen surgery - it's about 4 hours and is an open surgery. The scar on her belly (running up and down, not across) from the surgery is at least 6 inches long. It's a big deal to put her through this. On the other hand, I don't want her refluxing and potentially aspirating and winding up with aspiration pneumonia, which is something that could take a bad turn.
I finally heard back from the NP in the surgeon's office today. She sent my email to the surgeon. His opinion is that in Peyton's case, re-doing her Nissen is absolutely warranted. That said, he does not want to do it because of her overall condition. No surgery. Now, the fact is that she isn't having the trach surgery that was recommended by the ENT because that is OUR choice. WE made that decision in Peyton's best interests. However, this is the first time a doctor has stated to us that he didn't believe a recommended treatment was in Peyton's best interest. That's a tough one to swallow. At the same time, though, I trust his judgment and feel comfortable that he is doing what is best for Peyton.
I haven't gotten word on any results from the bronchoscopy - the doctor took cultures to see if whatever bacteria is plaguing Peyton can be identified in order to be treated properly. I can't even begin to tell you how many antibiotics Peyton has been on - regular antibiotics, really heavy duty "oral" antibiotics (though those go through her g-j tube), regular IV antibiotics, stronger IV antibiotics. She's been on nearly everything at this point!
Right now I am really believing God for an end to the respiratory issues that have been plaguing Peyton for over a year now, as well as the more recent gastrointestinal issues. I know He can heal her.
Showing posts with label trach. Show all posts
Showing posts with label trach. Show all posts
Thursday, January 13, 2011
Wednesday, January 5, 2011
Endoscopy - Bronchoscopy
Peyton is back home from her endoscopy and bronchoscopy!
We arrived at MUSC for 7:00 this morning. We got her checked in and into the holding area before going back for the procedures. Both the pulmonary doctor and gastroenterologist came to speak to me before the procedures just to explain what they'd be doing and what they would be looking for. I was able to go back into the procedure area with Peyton while the anesthesiologist got Peyton settled in with a nice dose of propofol. She was asleep very quickly and then I headed back out to the waiting room.
The procedures didn't take too long. The pulmonologist came out first to sit down and discuss her findings with me. Mid-way through, Ron showed up - he had to bring Moira to school, so came back when that was done. Essentially, what she found was that Peyton has the same white, frothy secretions we find in her mouth and back of her throat all the way down her airway and into her lungs. She said there were yellowish secretions towards the bottom on the right side. So, it's evident that she is still aspirating, which is not good. She suctioned out as much as she could. The difficult thing is that it just comes back - you can suction all you want, but it comes back. She was able to take some cultures so she could have them tested for various strains of bacteria. Up until now, we've had the regular nasal cultures done in the hospital and any antibiotics she's been on have either failed or took forever to even work, indicating whatever she's got is just outside the realm of the drugs' capability. We're trying to troubleshoot and it's like taking a shot in the dark. Hopefully the cultures taken today will provide a much better clue as to what she's got going on so that the doctors can know best how to treat the illness.
From a pulmonary point of view, it's not good to be aspirating. It could cause aspiration pneumonia, which has the potential to be devastating. So, what can they do?? Nothing. Without going to the extreme surgical measures I discussed a couple months back, there's really nothing we can do except try to get on top of these illnesses when they happen to try to suppress them before they become too much to handle. If you are new to Peyton's story and haven't read back far enough yet, the surgical options would be either doing a trach, which would allow us to suction her further down; or to do a layringotracheal separation - the airway and esophagus are physically separated and the airway is cut off from the upper throat so ALL breathing is through a trach and there would be NO sounds whatsoever coming out of Peyton's mouth again. Even with just a trach alone she could still aspirate. Anyway, it's difficult knowing that there are possible ways to help (and even those ways are definite!) and that you choose not to go those routes, even when you are making those choices based on what is in her best interest.
Then there was the endoscopy. This was because of the gastric bleeding she's been having. They needed to locate the source of the bleeding. Let me just say that my prayers were for the problem to be found so that it wouldn't be a mystery - either make it obvious and make it be something which is easily repaired OR just let it be nothing....let there be NO sign of anything being on. I have to say we were blessed today. I saw pictures the doctor took. He found NOTHING. No active bleed. No old blood. Not anything bloody. NOTHING!!!!!
Between the two procedures, the only troubling bit was this. Recall that back in August of 2009, Peyton had a nissen fundoplication surgery. This was done at a time when she was violently throwing up all the time. One of the risks of this procedure, an open surgery that left a several inch scar down her belly, is that it can come undone. Well, her nissen is no longer in tact. It is undone. So the question remains, what is to be done about that. She is throwing up, but not to the extent she was throwing up before. However, she IS aspirating. So, if we're faced with the possibility of this surgery it's a real tough call. I know when we saw the surgeon for a check up a few weeks back, he is currently inclined to be as minimally invasive as possible now considering how her overall health has generally declined. It is SO hard to know what to do.
So, it was a good news bad news kind of day. But we are so blessed that the endoscopy revealed NO bleeding. That is a huge relief. The pulmonologist took cultures and we'll hear more about the results in the coming days or week or so. The gastroenterologist took tissue samples, so it'll be a while before we hear anything back on that.
Aside from all of this, Peyton's temperature is back to normal. She's still pretty junky sounding, but is feeling much better than she was the past couple days.
Thank you so much for all your prayers and support!!
We arrived at MUSC for 7:00 this morning. We got her checked in and into the holding area before going back for the procedures. Both the pulmonary doctor and gastroenterologist came to speak to me before the procedures just to explain what they'd be doing and what they would be looking for. I was able to go back into the procedure area with Peyton while the anesthesiologist got Peyton settled in with a nice dose of propofol. She was asleep very quickly and then I headed back out to the waiting room.
The procedures didn't take too long. The pulmonologist came out first to sit down and discuss her findings with me. Mid-way through, Ron showed up - he had to bring Moira to school, so came back when that was done. Essentially, what she found was that Peyton has the same white, frothy secretions we find in her mouth and back of her throat all the way down her airway and into her lungs. She said there were yellowish secretions towards the bottom on the right side. So, it's evident that she is still aspirating, which is not good. She suctioned out as much as she could. The difficult thing is that it just comes back - you can suction all you want, but it comes back. She was able to take some cultures so she could have them tested for various strains of bacteria. Up until now, we've had the regular nasal cultures done in the hospital and any antibiotics she's been on have either failed or took forever to even work, indicating whatever she's got is just outside the realm of the drugs' capability. We're trying to troubleshoot and it's like taking a shot in the dark. Hopefully the cultures taken today will provide a much better clue as to what she's got going on so that the doctors can know best how to treat the illness.
From a pulmonary point of view, it's not good to be aspirating. It could cause aspiration pneumonia, which has the potential to be devastating. So, what can they do?? Nothing. Without going to the extreme surgical measures I discussed a couple months back, there's really nothing we can do except try to get on top of these illnesses when they happen to try to suppress them before they become too much to handle. If you are new to Peyton's story and haven't read back far enough yet, the surgical options would be either doing a trach, which would allow us to suction her further down; or to do a layringotracheal separation - the airway and esophagus are physically separated and the airway is cut off from the upper throat so ALL breathing is through a trach and there would be NO sounds whatsoever coming out of Peyton's mouth again. Even with just a trach alone she could still aspirate. Anyway, it's difficult knowing that there are possible ways to help (and even those ways are definite!) and that you choose not to go those routes, even when you are making those choices based on what is in her best interest.
Then there was the endoscopy. This was because of the gastric bleeding she's been having. They needed to locate the source of the bleeding. Let me just say that my prayers were for the problem to be found so that it wouldn't be a mystery - either make it obvious and make it be something which is easily repaired OR just let it be nothing....let there be NO sign of anything being on. I have to say we were blessed today. I saw pictures the doctor took. He found NOTHING. No active bleed. No old blood. Not anything bloody. NOTHING!!!!!
Between the two procedures, the only troubling bit was this. Recall that back in August of 2009, Peyton had a nissen fundoplication surgery. This was done at a time when she was violently throwing up all the time. One of the risks of this procedure, an open surgery that left a several inch scar down her belly, is that it can come undone. Well, her nissen is no longer in tact. It is undone. So the question remains, what is to be done about that. She is throwing up, but not to the extent she was throwing up before. However, she IS aspirating. So, if we're faced with the possibility of this surgery it's a real tough call. I know when we saw the surgeon for a check up a few weeks back, he is currently inclined to be as minimally invasive as possible now considering how her overall health has generally declined. It is SO hard to know what to do.
So, it was a good news bad news kind of day. But we are so blessed that the endoscopy revealed NO bleeding. That is a huge relief. The pulmonologist took cultures and we'll hear more about the results in the coming days or week or so. The gastroenterologist took tissue samples, so it'll be a while before we hear anything back on that.
Aside from all of this, Peyton's temperature is back to normal. She's still pretty junky sounding, but is feeling much better than she was the past couple days.
Thank you so much for all your prayers and support!!
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