While we sitting in the waiting room for Riley to come out of surgery to see if her trach can come out I started writing this but the day got busy and I didn't finish. So some of this was written on the day and some later. Here we go.
We have been waiting for the this day for a long time. When the trach as first placed her ENT thought that it would be in for 3yrs. Well Riley proved to be the fighter that we all know her to be and is getting it out 1yr 3mo and 6days after it was placed. So here we sit in the waiting room while the ENT has her in the OR evaluating her for the removal and possible taking it out. Riley is surpassing our expectation of her everyday
(That is the end of what I got written on the day of the removal)
So since I am now sitting down to write this on my computer I thought I would recap the whole day.
We got up at 5:30 to be able to leave by 6:15. I go into Riley room at about 5:45 and find Riley sitting up in her crib with her nurse. The nurse tells me that she has been up for able 15 minutes. So apparently just excited to this day as we are.
We arrived at the hospital at 7am as we were requested to do and headed up to the pre-op check in. Riley recently developed a white coat fear which she extended to the nurses as well. Sometimes I think she is more afraid of the nurses then the doctors. Which is funny since they mostly are just taking her head measurements, temperature, or some minor thing. So the hospital we go to is a teaching hospital so we get alot of students or residents. The nursing student that had starts to process us for check in. Putting on an ID bracelet became a chore and we ended up having to have them print another one so it could be off Riley's wrist and on her ankle. (I am going to have to remember that for the next time to save us the trouble and the tears) She listens to her heart and tries to get a blood pressure. Riley HATES the blood pressure cuff, she has since the beginning. The NICU use to have to put it on her and wait for her to sleep so they could get a blood pressure. So now she is screaming and crying so of course it doesn't read the first time then the second time it is reading high (go figure if I was screaming like that my blood pressure would be high too). Finally one of RNs comes over and says they would be fine without the reading since she looked fine and her heart rate was fine. They need a weight now, but Riley is too big for the baby scale but can't seat on her own without falling over on the big people scale. So Kyle has to hold her they weigh both of them, then he hands me Riley and the weigh just him and subtracted the two to get her weight. So now we are all checked in and have to waiting for anesthesia come in and consent us and ENT to come in.
We sit there for about an hour before we are all consented and ready to go. When the ENT comes in she explains that she is going to go in and sedate Riley. Then they are going to put a camera in her airway and take a look both above and below the trach to make sure that their is not any granulomas (A growth of inflammatory tissue, which is caused by the irritation of the airway by the tracheotomy tube) that would pose an issue with breathing when the trach is removed. If there are any and they would cause a issue the ENT will try to remove them and hopefully still be able to take the trach out. She was also going to check Riley's ears because the audiologist thought that she might have some fluid in her ears. She lets us know that after the procedure they will take Riley back tot he PICU and it will be about 20-30 minutes before we will be able to go back. And that once we are back if everything is good to go we will take the trach out and put a bandaid on it and that's it. Yes removal of a trach ends with a bandaid. It was hard decision to put it in and alot of work to take care of it and it all ends with a bandaid... kinda anticlimactic isn't.
Riley has fallen back to sleep in the stroller and when they come back in and says we are ready to go. I get gowned up to carry her in to the OR. Riley wakes up when I picked her and we follow to the 2 residents into the OR. She was fine as we walked into the OR, she was looking around at all the activity and the lights, then I went to lay her down on the table. That was the end she started screaming again, I felt terrible she was so scared. I just stood there and tried to calm her down as the put her under. It didn't take long before she was out. I headed out to the waiting room.
The procedure took about 45 minutes total. The ENT comes in and tells us that everything went well. Riley's vocal cords looked good. there are a small granuloma above the trach but she had left it alone because it was small enough that she did not think that it would cause any problems. The ENT said that we looked good to take the trach out and that we would do it in PICU. She leads us to the PICU waiting area and goes to check on Riley. She is back in like 2 minutes and say come on back. We were surprised. We get back there and there are like 10 people around Riley's bed, she is awake and screaming again. My poor baby. I got my camera out video taped Kyle taking the trach out and the ENT placing a bandaid on it.
Riley was really upset for alot of the morning, which I think had alot to do with the IV in her hand and that she was hungry since she could not eat after midnight the night before. She had to wait a bit to eat but once she did she was a bit happier. They were suppose to keep us overnight but the ENT said that if she was good all day that we could go home that the same day. So I had to scramble a bit to get things in place at home (ie nursing, oxygen supplies) so that could happen.
She did good the whole day, cranky but good. Though I would be cranky in I had a big IV and was stuck in the hospital too. By the time we got everything in place with the oxygen it was 6:00 at night but we did get to go home the same day. She did great overnight with the oxygen and no trach. She is using a nasal cannula now and that is going to take some getting use to. She screamed every time I tried to put it on her. i was finally able to get it on by using the stickers that hold it on but she was not a happy camper. Tonight was a bit better but it will take time for her to get use to it.
If you have any questions about decannualization let me know.
I have started my trach blog all about our decision to place the trach, the care required for one, and the process of working toward decannualization. I hope to have it up soon. If it get way too long I may break it into several blogs.
Until next time,
Katie
We arrived at the hospital at 7am as we were requested to do and headed up to the pre-op check in. Riley recently developed a white coat fear which she extended to the nurses as well. Sometimes I think she is more afraid of the nurses then the doctors. Which is funny since they mostly are just taking her head measurements, temperature, or some minor thing. So the hospital we go to is a teaching hospital so we get alot of students or residents. The nursing student that had starts to process us for check in. Putting on an ID bracelet became a chore and we ended up having to have them print another one so it could be off Riley's wrist and on her ankle. (I am going to have to remember that for the next time to save us the trouble and the tears) She listens to her heart and tries to get a blood pressure. Riley HATES the blood pressure cuff, she has since the beginning. The NICU use to have to put it on her and wait for her to sleep so they could get a blood pressure. So now she is screaming and crying so of course it doesn't read the first time then the second time it is reading high (go figure if I was screaming like that my blood pressure would be high too). Finally one of RNs comes over and says they would be fine without the reading since she looked fine and her heart rate was fine. They need a weight now, but Riley is too big for the baby scale but can't seat on her own without falling over on the big people scale. So Kyle has to hold her they weigh both of them, then he hands me Riley and the weigh just him and subtracted the two to get her weight. So now we are all checked in and have to waiting for anesthesia come in and consent us and ENT to come in.
We sit there for about an hour before we are all consented and ready to go. When the ENT comes in she explains that she is going to go in and sedate Riley. Then they are going to put a camera in her airway and take a look both above and below the trach to make sure that their is not any granulomas (A growth of inflammatory tissue, which is caused by the irritation of the airway by the tracheotomy tube) that would pose an issue with breathing when the trach is removed. If there are any and they would cause a issue the ENT will try to remove them and hopefully still be able to take the trach out. She was also going to check Riley's ears because the audiologist thought that she might have some fluid in her ears. She lets us know that after the procedure they will take Riley back tot he PICU and it will be about 20-30 minutes before we will be able to go back. And that once we are back if everything is good to go we will take the trach out and put a bandaid on it and that's it. Yes removal of a trach ends with a bandaid. It was hard decision to put it in and alot of work to take care of it and it all ends with a bandaid... kinda anticlimactic isn't.
Riley has fallen back to sleep in the stroller and when they come back in and says we are ready to go. I get gowned up to carry her in to the OR. Riley wakes up when I picked her and we follow to the 2 residents into the OR. She was fine as we walked into the OR, she was looking around at all the activity and the lights, then I went to lay her down on the table. That was the end she started screaming again, I felt terrible she was so scared. I just stood there and tried to calm her down as the put her under. It didn't take long before she was out. I headed out to the waiting room.
The procedure took about 45 minutes total. The ENT comes in and tells us that everything went well. Riley's vocal cords looked good. there are a small granuloma above the trach but she had left it alone because it was small enough that she did not think that it would cause any problems. The ENT said that we looked good to take the trach out and that we would do it in PICU. She leads us to the PICU waiting area and goes to check on Riley. She is back in like 2 minutes and say come on back. We were surprised. We get back there and there are like 10 people around Riley's bed, she is awake and screaming again. My poor baby. I got my camera out video taped Kyle taking the trach out and the ENT placing a bandaid on it.
Riley was really upset for alot of the morning, which I think had alot to do with the IV in her hand and that she was hungry since she could not eat after midnight the night before. She had to wait a bit to eat but once she did she was a bit happier. They were suppose to keep us overnight but the ENT said that if she was good all day that we could go home that the same day. So I had to scramble a bit to get things in place at home (ie nursing, oxygen supplies) so that could happen.
She did good the whole day, cranky but good. Though I would be cranky in I had a big IV and was stuck in the hospital too. By the time we got everything in place with the oxygen it was 6:00 at night but we did get to go home the same day. She did great overnight with the oxygen and no trach. She is using a nasal cannula now and that is going to take some getting use to. She screamed every time I tried to put it on her. i was finally able to get it on by using the stickers that hold it on but she was not a happy camper. Tonight was a bit better but it will take time for her to get use to it.
If you have any questions about decannualization let me know.
I have started my trach blog all about our decision to place the trach, the care required for one, and the process of working toward decannualization. I hope to have it up soon. If it get way too long I may break it into several blogs.
Until next time,
Katie
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