Got the news that when Bodie goes back to have the jaw distractors removed, they are going to downsize his trach again (from a 3.0 to a 2.5) and try capping.
Capping is just what it sounds like, they cap the trach forcing him to breathe through his mouth/nose. He'll either tolerate it well or he won't. I'm hoping he does well. He's gotten up to over 5 minutes with the Passy-Muir valve (a form of capping in a way). He only gets upset when he coughs. I think it scares him & the effect is like a snowball going down hill.
If the capping goes well they could remove the trach altogether, my question is where are all those secretions we constantly suction out going to go?
His swallow study came back positive, meaning we can continue with oral feeds even though he does not like them. Feeding seems to be the last big hurdle for trach kids & Bodie is proving to be textbook in that area.
Overall I am thrilled with his progress. I do hate that we have to wait until July 26th to get the results from the muscle biopsy. They do not give out results over the phone & have a two month wait for an appointment... Arrrrgh!
Tuesday, May 31, 2011
Wednesday, May 25, 2011
Jaw Distraction Surgery
On May 11 Bodie went in for his Jaw Distraction surgery. He also got tubes put in his ears and a muscle biopsy. The surgery went very well, we were actually surprised by how little swelling & bruising there was, but he looked like he was in alot of pain and had blood coming out of his mouth, nose, trach, g-tube, you name it.
Waiting to go back:
Here is his after-surgery picture:
We stayed in the Pediatric Intensive Care Unit with him for the next 6 days while he recovered, which is not our favorite place because of all the rules and it seems like we always have problems with a few of the nurses. My only real complaint was one nurse who took it upon herself to decide when he needed pain meds. At one point the Dr asked her when was the last time he got the meds and she said 6 am! It was 2 in the afternoon and he was supposed to be getting it every 4 hours. I had told her twice that he looked like he was in pain and the Respiratory Therapist told her once. She didn't respond to either of us but she sure responded to the Dr. I guess we were beneath her. They finally let us move to the regular PEDS floor.
Day 5 Pic:
An hour after we were in our new room I noticed that it looked like his skin was tearing between the two puncture points on one side. I tried to clean it because I originally had thought it was just dried blood and marker lines from the surgery but it was definitely his skin tearing. I put up a big fuss and had the surgeon in there the next morning. Not surprisingly, he acted like it was no big deal and not really important in the bigger picture of getting his airway open. He said he could fix any scars that remained. So I had to swallow my anger and move on. It's very difficult to have to look your child in the eyes all the time while they are being hurt and you can't do anything to help them.
Ryker's biggest complaint was that he had to correct a few of the Drs who were adjusting the wrong screws, which would be pushing his jaw in the wrong direction. Whoever was on duty next would be brought in, shown once, and then have to come in 12 hours later to do the adjustment, not surprising that they didn't remember exactly. There really should have been a better system in place.
After 10 long days, we were told that we could go home as soon as the surgeon got there the next morning to do a final adjustment and give him the all clear. We were So Happy to finally be getting out of there and wouldn't you know that damn Surgeon didn't show up until after 9 PM! We had to sit there for an entire extra day!
All in all, I guess it wasn't too bad. His jaw was moved forward 22 mm. Bodie is doing fine, the ENT changed his trach to 1/2 size smaller so more air can get around it. When he goes in to get his Hellraiser metal cage removed, she will downsize it another 1/2 size and cap it to see how he does. Hopefully that test goes better than the swallow study he just took! If that Trach comes out in the next few months, I will be a VERY happy lady!
Some Before & After Pics:
His new open airway also makes him Much Much more tolerant of his speaking valve and he gets to practice with a bottle with tiny bits of formula at a time! He can also (kind of) cry out loud now. It gets louder the more he needs to be suctioned.
His First Practice Bottle (not enjoying it):
We have an appointment with the surgeon tomorrow for a check up, and hopefully the metal will be removed in a month.
Waiting to go back:
Here is his after-surgery picture:
We stayed in the Pediatric Intensive Care Unit with him for the next 6 days while he recovered, which is not our favorite place because of all the rules and it seems like we always have problems with a few of the nurses. My only real complaint was one nurse who took it upon herself to decide when he needed pain meds. At one point the Dr asked her when was the last time he got the meds and she said 6 am! It was 2 in the afternoon and he was supposed to be getting it every 4 hours. I had told her twice that he looked like he was in pain and the Respiratory Therapist told her once. She didn't respond to either of us but she sure responded to the Dr. I guess we were beneath her. They finally let us move to the regular PEDS floor.
Day 5 Pic:
An hour after we were in our new room I noticed that it looked like his skin was tearing between the two puncture points on one side. I tried to clean it because I originally had thought it was just dried blood and marker lines from the surgery but it was definitely his skin tearing. I put up a big fuss and had the surgeon in there the next morning. Not surprisingly, he acted like it was no big deal and not really important in the bigger picture of getting his airway open. He said he could fix any scars that remained. So I had to swallow my anger and move on. It's very difficult to have to look your child in the eyes all the time while they are being hurt and you can't do anything to help them.
Ryker's biggest complaint was that he had to correct a few of the Drs who were adjusting the wrong screws, which would be pushing his jaw in the wrong direction. Whoever was on duty next would be brought in, shown once, and then have to come in 12 hours later to do the adjustment, not surprising that they didn't remember exactly. There really should have been a better system in place.
After 10 long days, we were told that we could go home as soon as the surgeon got there the next morning to do a final adjustment and give him the all clear. We were So Happy to finally be getting out of there and wouldn't you know that damn Surgeon didn't show up until after 9 PM! We had to sit there for an entire extra day!
All in all, I guess it wasn't too bad. His jaw was moved forward 22 mm. Bodie is doing fine, the ENT changed his trach to 1/2 size smaller so more air can get around it. When he goes in to get his Hellraiser metal cage removed, she will downsize it another 1/2 size and cap it to see how he does. Hopefully that test goes better than the swallow study he just took! If that Trach comes out in the next few months, I will be a VERY happy lady!
Some Before & After Pics:
Before & After:
His new open airway also makes him Much Much more tolerant of his speaking valve and he gets to practice with a bottle with tiny bits of formula at a time! He can also (kind of) cry out loud now. It gets louder the more he needs to be suctioned.
His First Practice Bottle (not enjoying it):
We have an appointment with the surgeon tomorrow for a check up, and hopefully the metal will be removed in a month.
Wednesday, May 18, 2011
Surgery update coming soon...
I was going to write & publish an update but Brandi said she wanted to do it when she brings him home so I'm going to let her do just that.
I'll just say how proud I've been of her during all this, along with Bodie- my sweet baby boy. I love you both, along with Wade more than words can ever express...
Ryker
I'll just say how proud I've been of her during all this, along with Bodie- my sweet baby boy. I love you both, along with Wade more than words can ever express...
Ryker
Tuesday, May 10, 2011
Tomorrow is the big day...
Bodie is scheduled to have his jaw distraction surgery tomorrow. They are also going to put tubes in his ears and take a muscle biopsy from his thigh. I'm not looking forward to him being under anesthesia again or the pain & suffering he will endure when he wakes up. Hopefully the end result will be worth it & he won't remember the procedure.
They will have to cut his bottom jaw in half on both sides & attach pins through his cheeks to adjust it daily. My poor little angel is going to look like some kind of Frankenstein for four weeks. With the ear procedure done at the same time, I imagine his head will swell up like a ballon.
I'm going to be praying real hard for my baby boy today & tomorrow.
They will have to cut his bottom jaw in half on both sides & attach pins through his cheeks to adjust it daily. My poor little angel is going to look like some kind of Frankenstein for four weeks. With the ear procedure done at the same time, I imagine his head will swell up like a ballon.
I'm going to be praying real hard for my baby boy today & tomorrow.
Friday, May 6, 2011
On the mend
After a rough few days Bodie seems to be doing better. We took him to see his Pulmonologist in New Orleans who said he had a respiratory infection. A regiment of steroids followed for the next five days along with home oxygen & breathing treatments every few hours.
He's starting to look & feel like his old self again & I am very relieved. We have a follow up visit on Monday and hope to have him cleared for his big surgery on Wednesday.
RH
He's starting to look & feel like his old self again & I am very relieved. We have a follow up visit on Monday and hope to have him cleared for his big surgery on Wednesday.
RH
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