As most of you know, Owen had his right VEPTR placed on October 4, 2011. It was a big and tough surgery and Dr. Campbell placed one long rib to spine rod with two fairly large outriggers that would keep Owen's right ribs from "parasoling" or shutting like a shutter. We remained in the hospital for one week and were thrilled to get home. We love CHOP, and we have some amazing PICU nurses there, however, we were anxious to get home.
We were sent home knowing that Dr. Campbell had a hard time closing Owen this time. The lumps in his back were quite noticeable and Dr. C said that he only got about a quarter inch of skin flap. A lot more skin flap is usually achieved and usually hoped for. But he was able to get it closed.
Nick and I had to make sure we changed the dressing this time, as opposed to June when we were allowed to remove it when we got home. We changed his dressing every 48 hours. The first week home was fine. We had a wound care checkup on October 17 and everything looked good. Then Wednesday, October 19, Owen got a fever. It was only 101.3 and the directives were that if he was over 102, come back to Philly. That night his fever only reached 101.7. I emailed the doc in the morning and since his wound was not actively leaking, we could stay home and wait it out. Maybe he just had a cold.
On Friday, October 21, I got up and got ready for work. I changed Owen's dressing and it was definitely actively leaking and I could see the metal in his back. I quickly called Nick and began to pack to head to Philadelphia.
We arrived in Philly and were admitted. Owen's wound was cultured and he tested positive for Staph gram negative, which is a very distant cousin to MRSA and one of those pesky bugs that likes to stick around. We scheduled surgery for Saturday October 22 for Dr. Campbell to take out the lower outcropping since it was coming through the skin and had contact with the staph.
On October 22, Dr. C did just that. He removed the lower outcropping, placed a wound vac in Owen's back and irrigated and debrided the wound. Surgery was again scheduled for later in the week to remove the wound vac, irrigate and debride the wound again and hopefully close him up. In the interim, Owen required Vancomycin and Rifampin- heavy duty antibiotics to fight the staph. He had to have a PICC line placed to deliver these antibiotics since they reek havoc on your blood vessels.
On Monday October 24, Owen went in for the PICC line under general anesthesia.
On Tuesday October 25, Owen went back in the OR to remove the wound vac and clean out the wound again. Dr. C felt the wound area looked great. He was able to get him partially closed, but we would be going home with an open wound. And by open wound, I mean that I can see metal and muscle in my sons back.
On Friday October 28, we were discharged with the PICC line and with the open wound. We had to learn how to flush the PICC with heparin two times daily and we had to do nightly dressing changes with betadyne and sterile dressings. And we did and we still do.
On Friday November 4, we had our first wound check-up with Dr. C. I removed Owen's dressing, thinking we had been doing such a great job. It looked a bit better to me and there was lots of pink skin that was granulating. But he took one look and said "oh no". Apparently, the skin is hardening around the edges and is trying to heal open. It's not healing from the bottom up as we would have hoped. In addition, the upper outcropping is poking too far out and threatening the integrity of one of the portions of the wound that is closed. Now, as of last night, the wound is leaking again.
Surgery is scheduled for tomorrow. We will go in, the upper outcropping will be removed. I am not sure if a wound vac will be placed and Dr. C will attempt to get this little boy closed.
It's a bit of a nightmare. And the craziest part is that these pieces have to go back in. Without the outcroppings, the ribs will shut on his lung. So Dr. C is going to see if he can have custom pieces made for Owen that will fit him. The insane part of this is that, this could happen every single time. No one is safe from these infections. We did everything humanly possible to prevent infection before the VEPTR was placed. CHP baths for Owen, Nick and I washed solely with Dial anti-bacterial body wash. Everything he or we touched was cleaned with clorox wipes. We really really did our best.
I am praying and hoping and wishing on a star that this is the last surgery. I will keep you posted!
Showing posts with label CHOP. Show all posts
Showing posts with label CHOP. Show all posts
Tuesday, November 8, 2011
Monday, November 15, 2010
Appointments and Updates....
It was/is and will continue to be busy around here. I just want to write an update so all who want to know, can know what is going on with Sir Owen.
November 23, Owen has a spinal MRI. Just about everyone who treats him feels that this will reveal that his spinal cord is tethered. A tethered spinal cord is when the cord attaches to this tissue around it which anchors it and inhibits its ability to move up or down in the spinal canal as he moves and grows. Our first whole body MRI revealed that he had a "borderline" tether. Surgery will need to be done immediately (within a few weeks).
December 13, Owen has testicle surgery. We have done this before and hopefully if all goes well with intubation this time, we will be in and out of surgery in a few hours and settled in for our night of observation. The doctor will make three tiny incisions, put a scope through one, locate the testicle and push it down through one incision and pull it through the other. He will have 6-10 meltaway stitches and hopefully it will go as well as the first surgery.
We met with Dr. Campbell. Dr. Campbell took one look at Owens films, ordered a whole bunch more and told us that Owens spine is trying to torque to his right. So as it tries to turn, its shutting the ribs on the right side like a shutter. In addition, his lung on his left side which is on the concave side of his body is being compromised vertically. Dr. Campbell created the VEPTR, which I have wrote about before. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. Owen will need two, one for each side and a set of anchors on each side that give the prosthetics some extra strength. One of the prosthesis will apply pressure down on the spine pushing the spine back, as it tries to continue to turn. The other will open and spread his ribs creating room for the lung. The before and after x-rays that we saw were remarkable. Owen will be straighter as result of the surgery, although its not the goal of the surgery. The goal is to create space for the lungs to grow and for biology to work for itself without further intervention by us. Needless to say, this is big for Owen. In good ways and bad. It potentially saves his life and allows his lungs to grow and have the space they need. It also begins the next 12 or more years of expansion surgeries which happen every 6 months. Most of the risks are rare, but skin breakthrough seems to be inevitable. Surgery is tentatively scheduled for March 22 in at CHOP in Philly.
This has also pretty much guaranteed Owen will be getting a feeding tube. We have one more month of feeding him as we are and seeing what his weight gain is and then we will have to have one. Nick thinks I have made the feeding tube symbolic of all Owens problems. I think as his mom, one of my most important jobs in taking care of him has been to feed him and now I feel like I am being usurped.
It doesn't matter though because he needs it for surgery and that is the end of that. He needs it, he gets it. Now I just have to figure out what that means for us, the baby sitter and potentially a nurse, since I work.
Wednesday of this week, we are back to CHOP for pulmonology tests for the VEPTR. Soon after we will be scheduled for the Dynamic MRI and a CT scan so that the doc can look down O's spinal cord.
That's all I have for now.
For anyone who is interested, here is Dr. Campbell's testimony before the Senate Health Committee regarding the VEPTR. http://www.aap.org/advocacy/washing/Therapeutics/docs/campbell.pdf
November 23, Owen has a spinal MRI. Just about everyone who treats him feels that this will reveal that his spinal cord is tethered. A tethered spinal cord is when the cord attaches to this tissue around it which anchors it and inhibits its ability to move up or down in the spinal canal as he moves and grows. Our first whole body MRI revealed that he had a "borderline" tether. Surgery will need to be done immediately (within a few weeks).
December 13, Owen has testicle surgery. We have done this before and hopefully if all goes well with intubation this time, we will be in and out of surgery in a few hours and settled in for our night of observation. The doctor will make three tiny incisions, put a scope through one, locate the testicle and push it down through one incision and pull it through the other. He will have 6-10 meltaway stitches and hopefully it will go as well as the first surgery.
We met with Dr. Campbell. Dr. Campbell took one look at Owens films, ordered a whole bunch more and told us that Owens spine is trying to torque to his right. So as it tries to turn, its shutting the ribs on the right side like a shutter. In addition, his lung on his left side which is on the concave side of his body is being compromised vertically. Dr. Campbell created the VEPTR, which I have wrote about before. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. Owen will need two, one for each side and a set of anchors on each side that give the prosthetics some extra strength. One of the prosthesis will apply pressure down on the spine pushing the spine back, as it tries to continue to turn. The other will open and spread his ribs creating room for the lung. The before and after x-rays that we saw were remarkable. Owen will be straighter as result of the surgery, although its not the goal of the surgery. The goal is to create space for the lungs to grow and for biology to work for itself without further intervention by us. Needless to say, this is big for Owen. In good ways and bad. It potentially saves his life and allows his lungs to grow and have the space they need. It also begins the next 12 or more years of expansion surgeries which happen every 6 months. Most of the risks are rare, but skin breakthrough seems to be inevitable. Surgery is tentatively scheduled for March 22 in at CHOP in Philly.
This has also pretty much guaranteed Owen will be getting a feeding tube. We have one more month of feeding him as we are and seeing what his weight gain is and then we will have to have one. Nick thinks I have made the feeding tube symbolic of all Owens problems. I think as his mom, one of my most important jobs in taking care of him has been to feed him and now I feel like I am being usurped.
It doesn't matter though because he needs it for surgery and that is the end of that. He needs it, he gets it. Now I just have to figure out what that means for us, the baby sitter and potentially a nurse, since I work.
Wednesday of this week, we are back to CHOP for pulmonology tests for the VEPTR. Soon after we will be scheduled for the Dynamic MRI and a CT scan so that the doc can look down O's spinal cord.
That's all I have for now.
For anyone who is interested, here is Dr. Campbell's testimony before the Senate Health Committee regarding the VEPTR. http://www.aap.org/advocacy/washing/Therapeutics/docs/campbell.pdf
Friday, October 29, 2010
Events of the week...
Owen is up 1 1/2 pounds! Yay!!! That pound and a half was hard work mind you! He had to eat butter, olive oil, meat-3x per day, rice cereal at every feeding, have more formula for each ounce of water, eat ice cream, whipped cream and pumpkin pie. Whoo hoo! Now we just have to keep this (horrendous, but yummy) diet up until he is a chunker like his little brother Caleb. I could not be more thrilled.
We have our MRI this coming week. Please send good vibes, prayers, thoughts, whatever you do, please. Anesthesia makes me nervous. Its one of the drawbacks of my profession. I know what can potentially go wrong. So I worry, have anxiety and earn myself a few gray hairs over it. (Ha, no you cannot tell, because I dye it.) We will be at CHOP in the PICU overnight and a lot of people say there is no better place to be. I am trying to find comfort in that.
As you all know, its Halloween. The babies are being Thing 1 and Thing 2 and Gavin is being the Cat in the Hat. Its going to be precious. As soon as I have pictures, I will post them on shutterfly (link can be found to the right of this post).
Aunt Patty is here visiting and she is meeting the babies for the first time. It should be a fun weekend.
Week one of dieting was not fun. I was cranky a lot and fell off the wagon (not the cheese wagon, the cookie wagon). Why is it that on my first diet week, everyone in my office bought cookies? So I had some. And then I felt bad. I did good though for the most part. Ate my lettuce. Are more lettuce. Ate even more lettuce and realized, I am hungry. So, I ate lettuce and other things, like soup or whole wheat pasta covered in veggies. Here are some things I learned this week: 1) I do not need 2 cups of pasta, like I thought. I can eat 1 cup of whole wheat pasta covered in my peppers, onions, spinach and olives and its more than enough food, 2) If you eat more than one 100 calorie pack at a time, it defeats the purpose, so needless to say, I am done with those, 3) A skinny latte with sugar free caramel syrup goes far at 3pm, 4) I can live without cheese. I may not like it, but I can do it, and lastly, 5) I don't need to sautee things in half a cup of olive oil. 2 teaspoons is plenty if you mix it well.
Happy Halloween!!!!
We have our MRI this coming week. Please send good vibes, prayers, thoughts, whatever you do, please. Anesthesia makes me nervous. Its one of the drawbacks of my profession. I know what can potentially go wrong. So I worry, have anxiety and earn myself a few gray hairs over it. (Ha, no you cannot tell, because I dye it.) We will be at CHOP in the PICU overnight and a lot of people say there is no better place to be. I am trying to find comfort in that.
As you all know, its Halloween. The babies are being Thing 1 and Thing 2 and Gavin is being the Cat in the Hat. Its going to be precious. As soon as I have pictures, I will post them on shutterfly (link can be found to the right of this post).
Aunt Patty is here visiting and she is meeting the babies for the first time. It should be a fun weekend.
Week one of dieting was not fun. I was cranky a lot and fell off the wagon (not the cheese wagon, the cookie wagon). Why is it that on my first diet week, everyone in my office bought cookies? So I had some. And then I felt bad. I did good though for the most part. Ate my lettuce. Are more lettuce. Ate even more lettuce and realized, I am hungry. So, I ate lettuce and other things, like soup or whole wheat pasta covered in veggies. Here are some things I learned this week: 1) I do not need 2 cups of pasta, like I thought. I can eat 1 cup of whole wheat pasta covered in my peppers, onions, spinach and olives and its more than enough food, 2) If you eat more than one 100 calorie pack at a time, it defeats the purpose, so needless to say, I am done with those, 3) A skinny latte with sugar free caramel syrup goes far at 3pm, 4) I can live without cheese. I may not like it, but I can do it, and lastly, 5) I don't need to sautee things in half a cup of olive oil. 2 teaspoons is plenty if you mix it well.
Happy Halloween!!!!
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