haikumama
04-25-2009, 12:52 AM
This is a message I never wanted to post. When my son was trached on 2/17/09 we were really, really hoping the trach would be out by now, or on the path to being out by now. But that doesn't look like the case.
I am having a hard time reconciling that the future is going to be just as hard or harder than things are right now. I mean, I hope they get better. They have to get better, right? But we've been told by numerous people that this is the easy part - the part where you don't know a lot about complications and illnesses and things like that. And to me, the thought that these past two month with the trach are the EASY months? Oh, man.
My son, Isaac, is 8 months old, 5 months adjusted. He was born at 28 weeks, 2 days. He weighed 2lbs 5oz. he was born early because my water broke at 20 weeks. I was on bedrest at home until 23wks 6days and then I was in the hospital for the duration of my pregnancy, trying to accumulate as much amniotic fluid as I could, stave off infection, and not go crazy from worry.
When he was born, we heard him cry, which was amazing. He was on the vent for 24 hours, the CPAP for two days, and then on the nasal cannula for quite a while. He came home from the NICU after 8 weeks, with no monitors or oxygen or anything. We were so grateful.
Then, in late January of this year, he began sounding really stridorous when he breathed. He was diagnosed with croup, and even hospitalized for a few days. But he always satted well, kept eating, kept smiling, etc.
They told us the stridor would end in a few days and he would be better.
Well, three weeks later, the stridor was worse. The retractions were worse, too. He was still eating fine, though, and the doctor would do spot checks on his o2 and it was always fine. So we went to see an ENT for a laryngoscopy. The ENT diagnosed laryngomalacia and said Ike would just have to outgrow it. It was nothing to worry about unless he ever turned blue. Thanks, doc.
Well, on Februrary 12th, Ike caught his first cold. Snot everywhere. He stopped eating and seemed to be getting dehydrated. We took him to the pediatrician early in the morning of 2/13 and when we were there, Ike's heartrate dipped, his sats went into the low 80s and the ped called 911 to get us to the hospital quickly.
We spent a lot of the day in the ER. They actually wanted to send us home at one point, but we said no. So we were admitted to the respiratory floor.
At about 10:30 that night, things started happening quickly. Even with a cannula and extra oxygen, his sats were dropping. The 16,000 14-year-old interns and residents kept trying racemic epinephrine and things like that, even when I told them it hadn't worked before. Finally, as Ike was getting worse and worse, an RT said, "We have to get this kid to the intermediate floor for some heliox."
By the time we were transferred up there, Ike was satting in the 50s. They were bagging him and it wasn't working. He was weakly crying and was a horrible blue/gray color. They rushed him in the bed, running, down the hall to the PICU. All I could do was chase after them, in my bare feet. They wouldn't let me in, so I waited in the too bright waiting room, completely freaking out.
When the doctor came out they told me they had intubated him but could only fit a coffee-straw sized tube in his throat. They didn't know why his airway was so constricted, but it was very, very critical. He was sedated, and paralyzed with medication.
After three terrifying days of heartrate drops and o2 drops, he was taken in for a bronch, to see what was going on with his airway. During the procedure, the doctor came out and told us he was going to have to do a trach. Ike's airway was too narrow to fit the tube back in. He also said because of inflammation from being sick and being intubated, he couldn't say why Ike's airway was so tiny. It had a 60% subglottic stenosis.
We were in the hospital for quite some time, but on March 9th, he came home.
Well, fast forward to last week. Ike had a second bronch so that we could finally get some answers. Yet his airway was still inflamed and red. The ENT said it could have to do with an infection Isaac had had the week before (with a lot of coughing involved), or it's most likely from reflux. He was unable to tell us much more, other than he thinks the stenosis is going to require surgical correction and that we should take him to Dr. Cotton for this.
So I have been in contact with Dr. Cotton's assistant to try to get the ball rolling. (We live in Austin, TX - not too close to Cincy.)
This all very overwhelming. We have two other children (Sam, almost 7, and Georgia, almost 3), as well as Ike. Our insurance only pays for four hours of nursing care a day and there is a nursing shortage so we only get a nurse maybe 4 days a week. My in-laws have been living with us to help out, but I'm sure you know how easy THAT is.
It has been an ironic blessing that my husband was laid off on January 30th, because he's been able to be at the hospital and at home to help out with everything and take control over finding us financial aid, and dealing with insurance.
And through all of it, Isaac is always smiling. He is so happy and loving and beautiful. But the trach seems to be causing more problems now. With his feeding, his O2 levels, his weight gain... I am so terrified that things are spiraling out of control. I want the trach out NOW. I want him to go to cinci and get fixed. I want aggressive doctors to treat the reflux instead of chase it. There are so many things that I want to control that I can't. Or that I seem to start being able to control, that get torn out of my hands.
I didn't want to have to join this group because I wanted this trach to just be a passing thing. But it seems like it's not and I need to stop denying that.
I would be grateful for some info on Cinci, if anyone has it. Where do you stay? What is the LTR process like? How long does the process last from contacting the assistant to getting up there?
I'm sure these seem like naive questions to you pros out there, and that I seem kind of like a jerk for resisting our "new normal" over here. But these questions are what's sustaining me now. I have to think we'll get this fixed sooner than later. But until then, I am going to need tips on keeping him healthy with two other kiddos in the house. And tips on controlling the reflux (he's on Prevacid and Reglan now, and has been for a while)... things like that.
I hope this message hasn't been too long or horrible. I look forward to getting advice and commiseration here.
thanks so much,
Kari
I am having a hard time reconciling that the future is going to be just as hard or harder than things are right now. I mean, I hope they get better. They have to get better, right? But we've been told by numerous people that this is the easy part - the part where you don't know a lot about complications and illnesses and things like that. And to me, the thought that these past two month with the trach are the EASY months? Oh, man.
My son, Isaac, is 8 months old, 5 months adjusted. He was born at 28 weeks, 2 days. He weighed 2lbs 5oz. he was born early because my water broke at 20 weeks. I was on bedrest at home until 23wks 6days and then I was in the hospital for the duration of my pregnancy, trying to accumulate as much amniotic fluid as I could, stave off infection, and not go crazy from worry.
When he was born, we heard him cry, which was amazing. He was on the vent for 24 hours, the CPAP for two days, and then on the nasal cannula for quite a while. He came home from the NICU after 8 weeks, with no monitors or oxygen or anything. We were so grateful.
Then, in late January of this year, he began sounding really stridorous when he breathed. He was diagnosed with croup, and even hospitalized for a few days. But he always satted well, kept eating, kept smiling, etc.
They told us the stridor would end in a few days and he would be better.
Well, three weeks later, the stridor was worse. The retractions were worse, too. He was still eating fine, though, and the doctor would do spot checks on his o2 and it was always fine. So we went to see an ENT for a laryngoscopy. The ENT diagnosed laryngomalacia and said Ike would just have to outgrow it. It was nothing to worry about unless he ever turned blue. Thanks, doc.
Well, on Februrary 12th, Ike caught his first cold. Snot everywhere. He stopped eating and seemed to be getting dehydrated. We took him to the pediatrician early in the morning of 2/13 and when we were there, Ike's heartrate dipped, his sats went into the low 80s and the ped called 911 to get us to the hospital quickly.
We spent a lot of the day in the ER. They actually wanted to send us home at one point, but we said no. So we were admitted to the respiratory floor.
At about 10:30 that night, things started happening quickly. Even with a cannula and extra oxygen, his sats were dropping. The 16,000 14-year-old interns and residents kept trying racemic epinephrine and things like that, even when I told them it hadn't worked before. Finally, as Ike was getting worse and worse, an RT said, "We have to get this kid to the intermediate floor for some heliox."
By the time we were transferred up there, Ike was satting in the 50s. They were bagging him and it wasn't working. He was weakly crying and was a horrible blue/gray color. They rushed him in the bed, running, down the hall to the PICU. All I could do was chase after them, in my bare feet. They wouldn't let me in, so I waited in the too bright waiting room, completely freaking out.
When the doctor came out they told me they had intubated him but could only fit a coffee-straw sized tube in his throat. They didn't know why his airway was so constricted, but it was very, very critical. He was sedated, and paralyzed with medication.
After three terrifying days of heartrate drops and o2 drops, he was taken in for a bronch, to see what was going on with his airway. During the procedure, the doctor came out and told us he was going to have to do a trach. Ike's airway was too narrow to fit the tube back in. He also said because of inflammation from being sick and being intubated, he couldn't say why Ike's airway was so tiny. It had a 60% subglottic stenosis.
We were in the hospital for quite some time, but on March 9th, he came home.
Well, fast forward to last week. Ike had a second bronch so that we could finally get some answers. Yet his airway was still inflamed and red. The ENT said it could have to do with an infection Isaac had had the week before (with a lot of coughing involved), or it's most likely from reflux. He was unable to tell us much more, other than he thinks the stenosis is going to require surgical correction and that we should take him to Dr. Cotton for this.
So I have been in contact with Dr. Cotton's assistant to try to get the ball rolling. (We live in Austin, TX - not too close to Cincy.)
This all very overwhelming. We have two other children (Sam, almost 7, and Georgia, almost 3), as well as Ike. Our insurance only pays for four hours of nursing care a day and there is a nursing shortage so we only get a nurse maybe 4 days a week. My in-laws have been living with us to help out, but I'm sure you know how easy THAT is.
It has been an ironic blessing that my husband was laid off on January 30th, because he's been able to be at the hospital and at home to help out with everything and take control over finding us financial aid, and dealing with insurance.
And through all of it, Isaac is always smiling. He is so happy and loving and beautiful. But the trach seems to be causing more problems now. With his feeding, his O2 levels, his weight gain... I am so terrified that things are spiraling out of control. I want the trach out NOW. I want him to go to cinci and get fixed. I want aggressive doctors to treat the reflux instead of chase it. There are so many things that I want to control that I can't. Or that I seem to start being able to control, that get torn out of my hands.
I didn't want to have to join this group because I wanted this trach to just be a passing thing. But it seems like it's not and I need to stop denying that.
I would be grateful for some info on Cinci, if anyone has it. Where do you stay? What is the LTR process like? How long does the process last from contacting the assistant to getting up there?
I'm sure these seem like naive questions to you pros out there, and that I seem kind of like a jerk for resisting our "new normal" over here. But these questions are what's sustaining me now. I have to think we'll get this fixed sooner than later. But until then, I am going to need tips on keeping him healthy with two other kiddos in the house. And tips on controlling the reflux (he's on Prevacid and Reglan now, and has been for a while)... things like that.
I hope this message hasn't been too long or horrible. I look forward to getting advice and commiseration here.
thanks so much,
Kari