Bad blogger. Been feeling blazay. (Note to self: that is a much under utilized word in my current vocabulary, increase the frequency of use.)
Monday was surgery. One night in intensive care. Uneventful except for constant need for repositioning and pain meds. The next 2 nights, ditto except in a regular room. (Right next to where we were last week ... not sure why they feel the need to constantly challenge my short term memory of where I live.)
By Thursday, he didn't even need any more pain meds. They thought he had an ileus (psuedo bowel obstruction) but things resolved and all was working again by Friday.
He's been in his wheelchair for 2 hours on Thursday. Friday he sat on the couch for a bit.
Day by day, he's getting stronger and back to himself.
Surgery has cleared him for home. Infectious Diseases will clear him Sunday for home. Then we should head home either late Sunday or Monday.
That is ... if he doesn't get any more fevers. Today, he decided to spike a small one for about 8 hours. Stinky butt. As a result, they had to draw labs tonight.
And me? Getting ancy. And tonight, must have eaten something that didn't agree with me as I feel like I have food poisoning. It's the right amount of time after dinner until symptoms. HOping this passes sooooon. Ugh ugh ugh.
Kaley is still an amazing helper and friend.
In the meantime, I've been doing a bit of writing. Mostly things about the hospital. I wrote an article on how I feel that with "family centered care" that the pendulum has swung too far and patient care is actually suffering as a result. (It's a whole philosophical shift.) I gave it to the Nurse Manager on the floor as well as the head of the IV team. I'm also beginning to collaborate on 2 articles with the IV team leader. She came up with several ideas and we're jumping on them. (More to come on that.)
But one is a case study of Manny and how the literature suggests 2 central line infections before starting an ethanol lock therapy. But we're doing a preemptive jump and asserting that 1) because his first central line infection was so devastating to him he might not survive a second one, and 2) because this is his ONLY life line for food, and 3) he is running out of viable veins for central lines ... then why do we have to wait for 2? It will be the first of it's kind.
The second article will be a point/counterpoint of nurse/mom on all the times the IV team and Manny have interacted in the almost 2 years we have been coming here. She said there are numerous case study type articles written by the nurse, but she's never seen one where it included the thoughts of both sides simultaneously. She feels it will be a good read.
I'm also trying to finalize the wording for Manny's book about Muscular Dystrophy. I've been toying back and forth with the idea of making it just about MD vs. the idea of showing that MD is a type of Neuromuscular Disorder (the bigger picture). I struggle because it's such a HARD, difficult topic that most adults don't understand, can I possibly make it simple enough for kids to get. 0r am I biting off more than I can chew? I'm also waiting for a few people to submit some pictures to include in the book. I need to take and get the cover picture to Shelli who is going to design the cover for the book. I need to nail down the title. Once all that is done, I'll typeset it on my Mac the way I want it and take it to the publisher for final editing and then publication/printing. I was hoping to have it together by next weekend ... the local MDA walk... but it just wasn't possible while living in the hospital.
So that's about it. Just life as usual from room 211.
Feb 24, 2012
Feb 20, 2012
2 less body parts
Sunday night, Manny stayed up about an hour longer than normal. When I went to put him into bed, he objected. But I went to wash my hands from the diaper change and when I came back, he was already asleep! Peacefully just drifted. I was sooo happy it was easy. He slept peacefully. And I did a lot better than I thought I would. (Being sleep deprived has it's perks ... like easy to fall asleep, easy to stay asleep.)
Morning came and was quite uneventful. Visitor after visitor came by to see him, mostly staff from all parts of the hospital. He's quite the charmer and has friends throughout the whole hospital.
My parents came by to be with me too. (In fact, they just left after I got settled in ICU.) Here's a quick couple of snapshots I took of Manny with my Dad. One with a nurse (she gave him the bear and then Manny suggested the photo! LOL) One with Kaley just before surgery.
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These two pictures are JUST before he went back. We were in the surgical holding room. The surgeon came in and talked to us and Manny was being his usual charming self. With him acting the way he was, you almost wonder if the surgery is necessary. They figured "Might as well" go ahead with it.
Mom, Dad, Kaley and I waited the two hours. They seemed to blink by in a second! (I know that was a gift because they normally D R A G!)
About half way through I got a page from the doctor. My heart about lept out of my chest. He wanted to speak with me. I was "thankful" that it was "just" a call about the appendix. It looked a bit off too so he asked if I wanted it taken. I agreed. (Thankfully Cartaya had told me this sometimes happens or I would have freaked out.)
About an hour later, they were done. The surgeon took me to a private room. He said the gallbladder was "Horrible!" I asked if it was leaking and he said not exactly, it was seeping. (Clearly a bad source of infection for him.) Then the doctor was very serious and almost in the verge of tears. He was saying that he couldn't believe the baby that had been playing, sweet, happy and laughing just before surgery could have just that sick of a gallbladder. He called Manny "Amazing".
People are always so impressed with this little guy. You couldn't possibly have know he was THAT sick based on the way he was acting. Just goes to show how much of a fighter he is.
Unfortunately, the surgeon didn't feel that he could get the tissues safely and decided not to proceed with the tissue samples to be sent off to pathology. I very disappointed but know that it's more important that Manny is SAFE and due to a few complications during surgery and general "issues", they didn't do the retrieval.
I mostly feel we let down a few other people (like the clinical trials where the tissue was to go) but I know they will understand and wanted Manny's safety above all things.
About 30 minutes later, we went back into recovery. Here are a few "after" shots. This is back in the recovery area.
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Morning came and was quite uneventful. Visitor after visitor came by to see him, mostly staff from all parts of the hospital. He's quite the charmer and has friends throughout the whole hospital.
My parents came by to be with me too. (In fact, they just left after I got settled in ICU.) Here's a quick couple of snapshots I took of Manny with my Dad. One with a nurse (she gave him the bear and then Manny suggested the photo! LOL) One with Kaley just before surgery.
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He was fun, funny, happy and amazing with everyone!
Many others were emotional, but he encouraged them all.
Many others were emotional, but he encouraged them all.
These two pictures are JUST before he went back. We were in the surgical holding room. The surgeon came in and talked to us and Manny was being his usual charming self. With him acting the way he was, you almost wonder if the surgery is necessary. They figured "Might as well" go ahead with it.
Mom, Dad, Kaley and I waited the two hours. They seemed to blink by in a second! (I know that was a gift because they normally D R A G!)
About half way through I got a page from the doctor. My heart about lept out of my chest. He wanted to speak with me. I was "thankful" that it was "just" a call about the appendix. It looked a bit off too so he asked if I wanted it taken. I agreed. (Thankfully Cartaya had told me this sometimes happens or I would have freaked out.)
About an hour later, they were done. The surgeon took me to a private room. He said the gallbladder was "Horrible!" I asked if it was leaking and he said not exactly, it was seeping. (Clearly a bad source of infection for him.) Then the doctor was very serious and almost in the verge of tears. He was saying that he couldn't believe the baby that had been playing, sweet, happy and laughing just before surgery could have just that sick of a gallbladder. He called Manny "Amazing".
People are always so impressed with this little guy. You couldn't possibly have know he was THAT sick based on the way he was acting. Just goes to show how much of a fighter he is.
Unfortunately, the surgeon didn't feel that he could get the tissues safely and decided not to proceed with the tissue samples to be sent off to pathology. I very disappointed but know that it's more important that Manny is SAFE and due to a few complications during surgery and general "issues", they didn't do the retrieval.
I mostly feel we let down a few other people (like the clinical trials where the tissue was to go) but I know they will understand and wanted Manny's safety above all things.
About 30 minutes later, we went back into recovery. Here are a few "after" shots. This is back in the recovery area.
He was stable pretty much since he's been out of surgery. He's on room air and still doing well. As I write this, it's 7:15 pm. He woke up a few times but only to cough or tell me his tummy hurt. Then some morphine and right back out.
The plan is to stay in ICU only one night and go from there.
When I got to ICU (we just left here a few days ago), the doc said Manny is like a bad penny that keeps showing up everywhere. (He didn't mean it rude.) And I said: At least he's cute. (They all agreed.) And because he's so complicated, they say they are always worried about him. To which I replied, "But it will be easier now ... there are two less body parts to worry about." (I thought it was funny but the doc didn't laugh.) A few minutes later (as if it took a while to get the joke), he said, "2 less body parts! ha ha ha". I think I just took him off guard with my completely off beat, irreverent sense of humor. It's the only way I'm surviving any of this.
The biggest complication we are trying to avoid from here is respiratory issues. Even with "regular" kids/adults, this is a common problem. The nerves to the respiratory system apparently run close to the area that was cut. There is pain. Therefore they don't want to breathe deeply. Then there becomes pooled secretions and voila ... pneumonia.
I've talked with the docs and respiratory therapists and we plan to be proactive with Manny and not let him GET to that point. I can hear him right now and he sounds like he is "rattling" a bit. I'm suctioning him ... often. Praying he sleeps tonight.
I've talked with the docs and respiratory therapists and we plan to be proactive with Manny and not let him GET to that point. I can hear him right now and he sounds like he is "rattling" a bit. I'm suctioning him ... often. Praying he sleeps tonight.
Thanks for all the prayers for our little warrior.
Feb 19, 2012
Fair Pictures
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| Yes, they are eating off his tray! |
Some earlier promised pictures of the fair. He loved it!
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Catch 22
Back in October, Manny and I were in Shands for almost a month. The goal was to find what was "wrong" with his digestive system that caused it to back up instead of go the right direction. After many tests and many weeks, it was decided to pull him off all food that went into his digestive system. Instead we put him on TPN which is "food elements" through the veins.
The veins were never designed to feed us. It's a distant second to regular feeds (and that includes by mouth, g tube or j tube). It's hard on the body, the liver especially. But some people have lived on it for a lifetime ... more than 3 decades.
A few days before the decision was made to switch him to TPN, I was getting that "knowing" sensation. God seems to always prepare my heart and mind and soul for something hard coming. I wasn't sure exactly was down that road, but I had the hardest time with this decision.
I remember the day well. It was grey and rainy outside. Manny was especially somber that day. Kaley was not at the hospital with me. And I just "sat" in the sadness. I mourned the loss. I grieved. It's as if I FELT all the weight of the obstacles ahead of me.
At that time, I had NO clue that in the next 4 months from that decision that he would have: 8 PICC holes, 2 broviac surgeries (including one that took 4 attempts), one central line infection that almost killed him, one false positive line infection, 2 bouts with cellulitis, a gallbladder surgery, and nearly 100 days in the hospital. ALL directly related to the decision to start TPN.
And somehow, I felt it and knew it. Not the specifics, but the heaviness.
At the same time, TPN has been a wonderful thing for us too. For those (short) moments when we are out of the hospital and doing well, THOSE moments have been our best. He's growing, learning, healthy. He's the best he's ever been.
That's part of the issue to me ... he's not chronically sick. He's GREAT and then HORRIBLE. Nothing in between. Hospital Manny is so different than Regular Life Manny. And that's part of what makes this hard ... and at the same time, part of what makes it all worth it. If he were in pain all the time, well ... let's just say I think it would make life so much harder. I'd second guess myself on everything. I'd hunker down and just try to make his life as comfortable as possible.
But instead, his life is GRAND and fun and adventurous. We have a lot of fun. His life is FULL. And it makes me fight very, very hard to get back to that state of being. I'm willing to go to extraordinary efforts to do this.
And there is the Catch 22.
So how do I do it? One day, one problem at a time. Today we prepare for the Gallbladder removal surgery. Tomorrow we do the surgery and start on recovery. After that, well, I have plans to try to get off this rollercoaster ride of GREAT and then HORRIBLE.
And me? I'm willing to fight, willing to be "all in" until the last moment he is still wanting to fight. Right now, I don't see that anywhere on the horizon. So we're "all in". Just like in Poker ... but in EVERY hand, I hold nothing back. Every hand I play my best. Every hand.
___________________
The details of the surgery ... as of right now, today should be very boring. Just a pop in by each of the doctors verifying everything is still on track (and it is).
Monday, 12:30 is the scheduled time for surgery. They'll have us down there early of course. The prodecure itself should take about 2 hours give or take.
While at it, they're going to try to harvest some abdominal wall tissue to send for research. It MIGHT give us some hints of what is going on or it might not. It might have implications for other families. It might shed some light on future research and clinical trials.
Apparently, the tissue bank has many muscles from legs, ankles, spines. (Merosin kids often have those types of surgeries.) But they have none from the internal organs. So this is a big deal. They won't take it if they can't do it safely.
The surgery will be done by the 2 Senior Pediatric Surgeons here. One is about 65 and the other about 55 and they've both been cutting their whole careers. The one surgeon is the one who did both of Manny's broviacs (and knows he had a difficult time with the one). He also did his muscle biopsy. They're adding the second one "just in case" since they expect it to be a difficult surgery. The anesthesiologist is the same one who has been there for almost all of his procedures (about 7 or so).
Therefore, I think we have the best team assembled that we could have. People who are good at what they do, PLUS they have worked on Manny before.
After the 2 hour or so procedure, he will go to recovery. After that, we're not sure if he will come back to the regular floor or go to the ICU for a few days. It will depend on how well the surgery goes and if there are any complications. He will be monitored very closely.
One common complication (even for "regular" adults/kids) is pneumonia. I know how they help prevent that with adults but not sure how they will mitigate it for him. They will also monitor for infection and bleeding.
I will update on Facebook as quickly as I can during and after the procedure. I will blog after.
So thanks, in advance, for the prayers for Manny Monday 12:30 EST especially. Specifically that it goes with no complications and that the recovery is as painless and quick as it can be. (I HATE seeing him suffer!)
And some peace for the family. We've been through many procedures/surgeries with him but this is the most major surgery he's been through with us. (Similar to the nissen fundoplication he had at 8 months before we adopted him.)
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| Cute little feet. Precious! |
The veins were never designed to feed us. It's a distant second to regular feeds (and that includes by mouth, g tube or j tube). It's hard on the body, the liver especially. But some people have lived on it for a lifetime ... more than 3 decades.
A few days before the decision was made to switch him to TPN, I was getting that "knowing" sensation. God seems to always prepare my heart and mind and soul for something hard coming. I wasn't sure exactly was down that road, but I had the hardest time with this decision.
I remember the day well. It was grey and rainy outside. Manny was especially somber that day. Kaley was not at the hospital with me. And I just "sat" in the sadness. I mourned the loss. I grieved. It's as if I FELT all the weight of the obstacles ahead of me.
At that time, I had NO clue that in the next 4 months from that decision that he would have: 8 PICC holes, 2 broviac surgeries (including one that took 4 attempts), one central line infection that almost killed him, one false positive line infection, 2 bouts with cellulitis, a gallbladder surgery, and nearly 100 days in the hospital. ALL directly related to the decision to start TPN.
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| If I prop his hiney, he can move his legs now! |
And somehow, I felt it and knew it. Not the specifics, but the heaviness.
At the same time, TPN has been a wonderful thing for us too. For those (short) moments when we are out of the hospital and doing well, THOSE moments have been our best. He's growing, learning, healthy. He's the best he's ever been.
That's part of the issue to me ... he's not chronically sick. He's GREAT and then HORRIBLE. Nothing in between. Hospital Manny is so different than Regular Life Manny. And that's part of what makes this hard ... and at the same time, part of what makes it all worth it. If he were in pain all the time, well ... let's just say I think it would make life so much harder. I'd second guess myself on everything. I'd hunker down and just try to make his life as comfortable as possible.
But instead, his life is GRAND and fun and adventurous. We have a lot of fun. His life is FULL. And it makes me fight very, very hard to get back to that state of being. I'm willing to go to extraordinary efforts to do this.
And there is the Catch 22.
So how do I do it? One day, one problem at a time. Today we prepare for the Gallbladder removal surgery. Tomorrow we do the surgery and start on recovery. After that, well, I have plans to try to get off this rollercoaster ride of GREAT and then HORRIBLE.
And me? I'm willing to fight, willing to be "all in" until the last moment he is still wanting to fight. Right now, I don't see that anywhere on the horizon. So we're "all in". Just like in Poker ... but in EVERY hand, I hold nothing back. Every hand I play my best. Every hand.
___________________
The details of the surgery ... as of right now, today should be very boring. Just a pop in by each of the doctors verifying everything is still on track (and it is).
Monday, 12:30 is the scheduled time for surgery. They'll have us down there early of course. The prodecure itself should take about 2 hours give or take.
Apparently, the tissue bank has many muscles from legs, ankles, spines. (Merosin kids often have those types of surgeries.) But they have none from the internal organs. So this is a big deal. They won't take it if they can't do it safely.
The surgery will be done by the 2 Senior Pediatric Surgeons here. One is about 65 and the other about 55 and they've both been cutting their whole careers. The one surgeon is the one who did both of Manny's broviacs (and knows he had a difficult time with the one). He also did his muscle biopsy. They're adding the second one "just in case" since they expect it to be a difficult surgery. The anesthesiologist is the same one who has been there for almost all of his procedures (about 7 or so).
Therefore, I think we have the best team assembled that we could have. People who are good at what they do, PLUS they have worked on Manny before.
After the 2 hour or so procedure, he will go to recovery. After that, we're not sure if he will come back to the regular floor or go to the ICU for a few days. It will depend on how well the surgery goes and if there are any complications. He will be monitored very closely.
One common complication (even for "regular" adults/kids) is pneumonia. I know how they help prevent that with adults but not sure how they will mitigate it for him. They will also monitor for infection and bleeding.
I will update on Facebook as quickly as I can during and after the procedure. I will blog after.
So thanks, in advance, for the prayers for Manny Monday 12:30 EST especially. Specifically that it goes with no complications and that the recovery is as painless and quick as it can be. (I HATE seeing him suffer!)
And some peace for the family. We've been through many procedures/surgeries with him but this is the most major surgery he's been through with us. (Similar to the nissen fundoplication he had at 8 months before we adopted him.)
Feb 16, 2012
More medical lessons
More "Medical Lessons" ...
Most kids, by they are the time they are 2 1/2 like Manny, have heart rates approximately similar to adults. 100 would be a tad high, 70's would be about normal. (Give or take). But Manny? His is faster. Not sure why but it just always is. Even at home, his day time rate is the 120's-130's and his night time rate is 110's. I've NEVER seen it go below 100. (He sleeps on a pulse ox at home that shows the rate.)
Wednesday night, Manny's heart rate kept dropping to the mid 70's. Now this wouldn't normally even alert a nurse because that is "normal" ... but not normal for Manny. So I mentioned it to his nurse who kept an eye on it for the rest of the night. I was up quite late investigating the possible causes and if I needed to worry about anything.
Eventually it stabalized at near normal so I could sleep.
By morning his heart rate was still a little low but his blood pressure was VERY low. They redid it several times just to see ... it was accurate. But thankfully, as the day progressed, his blood pressure returned to a normal range and has stayed right all day.
Therefore, we got to move from ICU and to our "regular" room. It was crazy how much better it feels over here! I have spent so much time here that it feels like home, surrounded by (mostly) friends who are in our camp. People here fight over who gets to take care of Manny.
The strangest part is that Manny perked right up in this room! He was doing better in ICU but now he's acting just like himself again! (Just with periodic bouts of pain and a very sore, right abdomen.)
I put him in his bed and he did this huge sigh. He said, "I home." A very happy and sad statement all at the same time. Happy because I am glad to know he likes it here and is not traumatized. But sad that the hospital is considered a pleasant place to be. It's a strange resolve.
The plan?? We are scheduled to have his gallbladder taken out on Monday. It's called a cholecystectomy. These days, they usually do it laparoscopically... which means small incisions and very little recovery time. But Manny is not a candidate for that type of surgery.
He has had other abdominal surgery so it would be better to do this as an "open cholecystectomy". The surgeon will use the same previous cut to reopen Manny's belly, take out the gallbladder and visualize the liver. We talked about "looking around" while down there but he doesn't want to because it could cause more adhesions and therefore more troubles down the road.
He'll also have a cholangiogram... an imaging study of the biliary tree to see exactly where the blockage/problem is just prior to the surgery.
Recovery for this is about 1 week in the hospital give or take. Then several weeks recovery at home.
Meanwhile, we're about to start a new protocol to help reduce central line infections. The team here is very excited because Manny will be their first patient that they establish within the hospital. They have a few kids who come in with protocols and they follow them. But they wrote and established the protocol for Manny. So everyone is very excited. They weill be doing some training for the staff and will include me on the training since I will need to be trained on the procedure so I can do it at home too.
But the quick version is ... Manny goes on TPN for 18 hours. He is off for 6 hours. During those hours, we will put in an Ethanol Lock. Push the liquid in his tube. It remains there. When the 6 hours are over, pull the solution out. Feed. The idea is that the ethanol doesn't actually enter the bloodstream (and if it accidentally did, it's not a huge deal) instead, it stays in the line/catheter to prevent things from growing in it. We will do this Monday, Wednesday and Friday.
They are most excited about this whole thing because most studies show that central line infections went down to basically ZERO while on this protocol. And in the rare cases where it does get infected, basically zero need to be removed. That is HUGE for him.
Another cool part is ... there are no kids with this exact protocol (I'll specify more later) and so the IV team and I will be writing a case study involving him in the near future.
8pm: Notice Manny is scratching at his chest. I open his gown and low and behold ... there's a bad rash in the exact shape of the tegaderm around his broviac. And the dressing has completely come away and is exposing the site. We've called the IV team.
He's also started on a new low grade fever. And a little cough/rattle.
Like herding cats to stay on top of all this for him! Truly a full time job.
Most kids, by they are the time they are 2 1/2 like Manny, have heart rates approximately similar to adults. 100 would be a tad high, 70's would be about normal. (Give or take). But Manny? His is faster. Not sure why but it just always is. Even at home, his day time rate is the 120's-130's and his night time rate is 110's. I've NEVER seen it go below 100. (He sleeps on a pulse ox at home that shows the rate.)
Wednesday night, Manny's heart rate kept dropping to the mid 70's. Now this wouldn't normally even alert a nurse because that is "normal" ... but not normal for Manny. So I mentioned it to his nurse who kept an eye on it for the rest of the night. I was up quite late investigating the possible causes and if I needed to worry about anything.
Eventually it stabalized at near normal so I could sleep.
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| Picture from last week post broviac surgery |
By morning his heart rate was still a little low but his blood pressure was VERY low. They redid it several times just to see ... it was accurate. But thankfully, as the day progressed, his blood pressure returned to a normal range and has stayed right all day.
Therefore, we got to move from ICU and to our "regular" room. It was crazy how much better it feels over here! I have spent so much time here that it feels like home, surrounded by (mostly) friends who are in our camp. People here fight over who gets to take care of Manny.
The strangest part is that Manny perked right up in this room! He was doing better in ICU but now he's acting just like himself again! (Just with periodic bouts of pain and a very sore, right abdomen.)
I put him in his bed and he did this huge sigh. He said, "I home." A very happy and sad statement all at the same time. Happy because I am glad to know he likes it here and is not traumatized. But sad that the hospital is considered a pleasant place to be. It's a strange resolve.
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| smiley baby with his new bears, Thanks, Arlene! |
The plan?? We are scheduled to have his gallbladder taken out on Monday. It's called a cholecystectomy. These days, they usually do it laparoscopically... which means small incisions and very little recovery time. But Manny is not a candidate for that type of surgery.
He has had other abdominal surgery so it would be better to do this as an "open cholecystectomy". The surgeon will use the same previous cut to reopen Manny's belly, take out the gallbladder and visualize the liver. We talked about "looking around" while down there but he doesn't want to because it could cause more adhesions and therefore more troubles down the road.
He'll also have a cholangiogram... an imaging study of the biliary tree to see exactly where the blockage/problem is just prior to the surgery.
Recovery for this is about 1 week in the hospital give or take. Then several weeks recovery at home.
Meanwhile, we're about to start a new protocol to help reduce central line infections. The team here is very excited because Manny will be their first patient that they establish within the hospital. They have a few kids who come in with protocols and they follow them. But they wrote and established the protocol for Manny. So everyone is very excited. They weill be doing some training for the staff and will include me on the training since I will need to be trained on the procedure so I can do it at home too.
But the quick version is ... Manny goes on TPN for 18 hours. He is off for 6 hours. During those hours, we will put in an Ethanol Lock. Push the liquid in his tube. It remains there. When the 6 hours are over, pull the solution out. Feed. The idea is that the ethanol doesn't actually enter the bloodstream (and if it accidentally did, it's not a huge deal) instead, it stays in the line/catheter to prevent things from growing in it. We will do this Monday, Wednesday and Friday.
They are most excited about this whole thing because most studies show that central line infections went down to basically ZERO while on this protocol. And in the rare cases where it does get infected, basically zero need to be removed. That is HUGE for him.
Another cool part is ... there are no kids with this exact protocol (I'll specify more later) and so the IV team and I will be writing a case study involving him in the near future.
8pm: Notice Manny is scratching at his chest. I open his gown and low and behold ... there's a bad rash in the exact shape of the tegaderm around his broviac. And the dressing has completely come away and is exposing the site. We've called the IV team.
He's also started on a new low grade fever. And a little cough/rattle.
Like herding cats to stay on top of all this for him! Truly a full time job.
Feb 15, 2012
Blood is a good thing
So the good news first ... the blood transfusion went well with no complications (just like last time). Not sure why his body is so weak and overrun with infection that he NEEDED it, but he did.
He liked that transfusion so much that today he is sitting up and playing with his ipad. He's mostly back to himself ... except ...
for periodic bouts of very bad pain. I have some friends who are nurses here and they were here for one of the more mild episodes. He starts to sweat profusely, he increases saliva, he starts screaming "Owie help me" and is generally distressed. The one nurse had gallstones when she was pregnant and she said it looked like that kind of pain to her. (He doesn't have the stones, but the incredibly inflammed gallbladder.) Then the episode is over and he goes back to playing.
I got the blood results this morning and they look like you'd expect from someone who was very sick and then got a transfusion. Hope it's enough to keep him stable to fight this infection.
The night last night was long and hard. It started with him not able to go to sleep (it was just after the transfusion and I think it made him aggitated). Eventually he did sleep, about 11:30 pm and I decided it was my chance to slip away and get a shower. (Let's just say you should be thankful you weren't here to smell me yesterday.)
I was only gone a few minutes (maybe 10) and when I got back to the room, he was desatting. Now you have to understand, he was at 100% this whole time. He's never been below 98, even when he was non-responsive. He tends to go from "Fine" to "crash" because he's compensated for so long. So I did my usual thing of rearranging him, suctioning him, making sure the lead was on right, etc. (All the trouble shooting things.) And he was still dropping. Called for the nurse and she got the Respiratory therapist to come and give him breathing treatments. They seemed to help. The last thing we need is a respiratory illness on top of all this! And he tested positive for Rhinovirus (the virus responsible for the common cold, but can turn into much more).
I was up often suctioning and repositioning him. At one point, the nurse got scared and ran in here because he was coughing/choking and couldn't catch his breath. But this morning, after he woke up, he's better able to manage his secretions and has been at 100% all morning. Keeping a close eye on this.
Got the ultrasound report back. Basically no change from Saturday's. There is still a very inflammed gallbladder. There is still fluid (that shouldn't be there) outside the gallbladder. This is after 5 days of draining it. Waiting for the doctor to see what their plan is with it. So far, it's just to keep him on antibiotics and wait. I'm not so sure I'm comfortable with that plan since I know this thing could rupture easily as he has all the stages of advanced acute acalculous cholecystitis. I'm not convinced that it's not a slow leak into his gut in fact.
As the day drags on, I'm hearing more and more congestion. He's starting to "rattle" and that is NEVER a good sign. He's doing fine still and we must keep it that way.
Talked to the Doctor in the ICU and she was blown away at how alert and responsive he is today. (Blood makes all the difference!) She felt he was stable enough to go to the floor tomorrow as long as he is monitored pretty closely. I'm good with that. I will have a toilet, shower, bed and refrigerator there. (So HEAVEN compared to here.) And I know the signs to watch for.
The GI doc is trying to stabilize him and then get us to a motility expert. She said there are only like 5 pediatric ones in the whole country. I'm liking that she is taking this seriously this time. (Last time they didn't... how we ended up at Shands.) We have a lot of thoughts circulating.
"Doc" stopped by to see me and I told him my concerns in a round about way. He said, "I hear what you're thinking and I dont' have any answers." But at least we were still on the same page again. If the night goes well, we'll be transferred back to his service where he makes the final call on all these things. I like that because he has the whole perspective of Manny over time, how sick he gets, how fast he crashes, etc etc.
Bottom line is right now, there is an infection in his body (not his blood thankfully) that is raging out of control. It's causing pain, blood labs similar to sepsis, etc. We don't want it to get ahead of us.
Tonight, the surgeon stopped by. He wanted to come earlier but got swamped. He said that he and the Infectious Diseases doc were discussing that the gallbladder IS the only source of the infection raging in his body. He suggested it come out. The surgeon said that he is ready to discuss that possibility with the team tomorrow.
He will talk to Cartaya, the GI, Infectious Diseases, etc. and see if that is the best idea.
In the research I've done, they often find cholecystitis as an incidental finding while looking for something else. In that case, there are no symptoms, so no need to remove. Typically a round of antibiotics and it's all back to new. But in cases where there are symptoms, I can find very little evidence for the wait and see method.
Saturday the gallbladder was enlarged. Tuesday, it was bigger. They've drained tons of fluids out of him. In fact, he left last week weighing 13.2 kilos. Admitted (4 days later) at 13.8. Tonight he's 12.9. (And for those who don't "speak" Kilos, that says he has lost almost 2 1/2 pounds in 5 days.) I am telling you, they drained a LOT of fluid off of him. And yet, the gallbladder is still just as inflammed or "hot" as they call it. It's akin to an appendix about to burst. And the results are similar if it does.
As I write this tonight it's 9:40 pm and he's finally asleep for the day. He didn't nap, he was awake all day! It was a good day. The monitors are showing his pulse rate is slowing down. Not worried yet because maybe it's just a sign of his pain reducing and he's not as distressed. On the other hand, I can't help but consider it could be something else. Time will tell. And I love that he's on a monitor so we know instantly if something were to go "wrong". But normally he sleeps around 120 when he's well, not stressed. And it's around 90 right now (more typical for his age, but not typical for him).
His blood pressure is low and dropping. I'm hoping this is a GOOD thing. A sign of good things to come and stability. But my Mama gut says nope ... it's going to be a long night. Praying I am wrong.
He liked that transfusion so much that today he is sitting up and playing with his ipad. He's mostly back to himself ... except ...
for periodic bouts of very bad pain. I have some friends who are nurses here and they were here for one of the more mild episodes. He starts to sweat profusely, he increases saliva, he starts screaming "Owie help me" and is generally distressed. The one nurse had gallstones when she was pregnant and she said it looked like that kind of pain to her. (He doesn't have the stones, but the incredibly inflammed gallbladder.) Then the episode is over and he goes back to playing.
I got the blood results this morning and they look like you'd expect from someone who was very sick and then got a transfusion. Hope it's enough to keep him stable to fight this infection.
The night last night was long and hard. It started with him not able to go to sleep (it was just after the transfusion and I think it made him aggitated). Eventually he did sleep, about 11:30 pm and I decided it was my chance to slip away and get a shower. (Let's just say you should be thankful you weren't here to smell me yesterday.)
I was only gone a few minutes (maybe 10) and when I got back to the room, he was desatting. Now you have to understand, he was at 100% this whole time. He's never been below 98, even when he was non-responsive. He tends to go from "Fine" to "crash" because he's compensated for so long. So I did my usual thing of rearranging him, suctioning him, making sure the lead was on right, etc. (All the trouble shooting things.) And he was still dropping. Called for the nurse and she got the Respiratory therapist to come and give him breathing treatments. They seemed to help. The last thing we need is a respiratory illness on top of all this! And he tested positive for Rhinovirus (the virus responsible for the common cold, but can turn into much more).
I was up often suctioning and repositioning him. At one point, the nurse got scared and ran in here because he was coughing/choking and couldn't catch his breath. But this morning, after he woke up, he's better able to manage his secretions and has been at 100% all morning. Keeping a close eye on this.
Got the ultrasound report back. Basically no change from Saturday's. There is still a very inflammed gallbladder. There is still fluid (that shouldn't be there) outside the gallbladder. This is after 5 days of draining it. Waiting for the doctor to see what their plan is with it. So far, it's just to keep him on antibiotics and wait. I'm not so sure I'm comfortable with that plan since I know this thing could rupture easily as he has all the stages of advanced acute acalculous cholecystitis. I'm not convinced that it's not a slow leak into his gut in fact.
As the day drags on, I'm hearing more and more congestion. He's starting to "rattle" and that is NEVER a good sign. He's doing fine still and we must keep it that way.
Talked to the Doctor in the ICU and she was blown away at how alert and responsive he is today. (Blood makes all the difference!) She felt he was stable enough to go to the floor tomorrow as long as he is monitored pretty closely. I'm good with that. I will have a toilet, shower, bed and refrigerator there. (So HEAVEN compared to here.) And I know the signs to watch for.
The GI doc is trying to stabilize him and then get us to a motility expert. She said there are only like 5 pediatric ones in the whole country. I'm liking that she is taking this seriously this time. (Last time they didn't... how we ended up at Shands.) We have a lot of thoughts circulating.
"Doc" stopped by to see me and I told him my concerns in a round about way. He said, "I hear what you're thinking and I dont' have any answers." But at least we were still on the same page again. If the night goes well, we'll be transferred back to his service where he makes the final call on all these things. I like that because he has the whole perspective of Manny over time, how sick he gets, how fast he crashes, etc etc.
Bottom line is right now, there is an infection in his body (not his blood thankfully) that is raging out of control. It's causing pain, blood labs similar to sepsis, etc. We don't want it to get ahead of us.
Tonight, the surgeon stopped by. He wanted to come earlier but got swamped. He said that he and the Infectious Diseases doc were discussing that the gallbladder IS the only source of the infection raging in his body. He suggested it come out. The surgeon said that he is ready to discuss that possibility with the team tomorrow.
He will talk to Cartaya, the GI, Infectious Diseases, etc. and see if that is the best idea.
In the research I've done, they often find cholecystitis as an incidental finding while looking for something else. In that case, there are no symptoms, so no need to remove. Typically a round of antibiotics and it's all back to new. But in cases where there are symptoms, I can find very little evidence for the wait and see method.
Saturday the gallbladder was enlarged. Tuesday, it was bigger. They've drained tons of fluids out of him. In fact, he left last week weighing 13.2 kilos. Admitted (4 days later) at 13.8. Tonight he's 12.9. (And for those who don't "speak" Kilos, that says he has lost almost 2 1/2 pounds in 5 days.) I am telling you, they drained a LOT of fluid off of him. And yet, the gallbladder is still just as inflammed or "hot" as they call it. It's akin to an appendix about to burst. And the results are similar if it does.
As I write this tonight it's 9:40 pm and he's finally asleep for the day. He didn't nap, he was awake all day! It was a good day. The monitors are showing his pulse rate is slowing down. Not worried yet because maybe it's just a sign of his pain reducing and he's not as distressed. On the other hand, I can't help but consider it could be something else. Time will tell. And I love that he's on a monitor so we know instantly if something were to go "wrong". But normally he sleeps around 120 when he's well, not stressed. And it's around 90 right now (more typical for his age, but not typical for him).
His blood pressure is low and dropping. I'm hoping this is a GOOD thing. A sign of good things to come and stability. But my Mama gut says nope ... it's going to be a long night. Praying I am wrong.
Why Adopt?
"Why did you adopt all these kids?" It's a question that has come up in whisperings and hints around me but no one comes outright and asks it. I know I don't "owe" anyone an explanation/justification ... and there's no way to do it adequately in a few paragraphs but here goes a quick overview attempt. (And I don't think there's a way to do this without offending a few, but I will try.)
Dan and I grew up in a church that had a general philosophy of "When the Kingdom comes". There's a thinking that "In the world tomorrow" x, y and z will be fixed. When Jesus returns, things will be made right. Many people understood the concept "correctly" but it was also used as an excuse (to many) to do nothing. No need to evangelize, no need to be kind to fellow humans, etc. I mean NOTHING.
Dan and I got married ... Christmas Day (yes, you read that right) in 1994. A week later, the church announced some major changes and the church we grew up in became splintered in several directions. So we have friends/family with hugely varying religious ideas. (Understatement).
Before we got married, we wanted to adopt. Somewhere along the way, it became clear to us that we should adopt those who wouldn't have had a family otherwise. I feel God showed us that path and we took it. At first, the choices were fairly easy. Jacob and Kaley, for example. People don't adopt kids who are African American out of the Foster system. Period. The odds are (at least in our state) that if you hit age 1, you have less than a 5% chance of ever being adopted. So it seemed a no-brainer. Along the way we discovered their medical conditions. AFTER we adopted them. But by then, they were "ours" and you just buck up and do what any parent would do.
Eventually we got to China and you can't "unsee" after you have seen something. These kids are just babies needing a home, needing warm clothes, needing a stranger to be kind to them.
Matthew25 comes readily to mind. Do this unto the "least" of these... clothe, feed, etc. If you haven't read this powerful chapter lately, you might want to reread the whole thing. The context of it is quite chilling. It talks about an ACTIVE participation. DOING, not just saying.
But bottom line ... by the end of the chapter, Jesus says to one group (the doers) "Well done, welcome to Eternal life" and the other group (the non-doers/waiters) "Depart from me, I never knew you." And I don't know about you, but that makes me WEEP. And all I know is, I have NOOO excuse. I know what I am to be doing. It is in my power to help. I must not withhold my help. And beyond that, God has equipped me to do just that. He's given me talents (also talked about in this same context) and expects me to use them to propel His Kingdom.
James 2:14-17 is another powerful section. In paraphrase ... faith without works is dead. If a person says, "Hey, I'm cold and I need a coat" and you say, "Hope you find one" ... uh, it's a problem. But I know soooo many people who do this in regards to kids who need a home. They see the need. They close their eyes and say, "I hope you find a family".
Am I saying everyone should adopt? NOOOOO ... Trust me, this road is not for everyone. But there's stuff people can do for the orphan. Mostly: Don't turn a blind eye and shut off your heart. God has probably prepared YOU to do something for His Kingdom. Do THAT.
So ... back to Manny specifically. Our family had been being prepared for a while. God even prepared our hearts for taking in a child that would not live long. (A string of converstations, trainings, experiences, etc.) I'll write that blog soon... "Why Manny".
But when Manny was presented to us, we initially said No. He was too severe. His needs were very unknown. Even his condition was unknown. And I can write out the details of the 2 weeks where we kept saying No and God kept saying Yes. (It's quite remarkable.) But ultimately, we said yes.
And by saying YES to Manny.... it was the right decision. (I know some of you might question that, and it's OK.) We would do it again in a heart beat.
With that said, to say YES to Manny meant we had to say NO to a lot of things too. I had China projects that have been put on complete hold. Our house is needing maintenance. My relationship with Dan and each of my kids is sometimes strained (like a month at a time hospital stays). Dan's business has suffered. We have said no to countless things. Life is VERY hard sometimes.
So why did we do this? For so many reasons. (Some mentioned above.) But bottom line is ... Jacob, Kaley, Sam, Luke, Zoe and Manny deserved a family. They deserve to walk out this life with people who love them. People who will fight for them. People who will teach them of God. And we wanted to be parents. A match made in heaven.
And I believe that MY role as a Christian is to do the best to walk the talk (to the best of my ability), to show God's love wherever I go. ("You shall know them because they show love to one another") And I have chosen to walk the road of adoption.
I hear all the excuses of people as to why they can't adopt. (Not sure why they feel the need to let me know their reasonings ... guilt perhaps?) But among them are cost, too old, not enough room for more, not sure they could love someone that is not their "own", time consuming, too much paperwork, fear of the unknown, etc.
I am so very thankful that God didn't use any of those excuses when He chose to adopt me! I mean I'm SURE I was costly (Jesus Christ's sacrifice comes to mind as just one of the high payments He made for me). I'm sure God is old, but never too old. He always has room for another child. I AM His "own". etc.
So why adopt? I think the better question would be "Why NOT adopt?"
Dan and I grew up in a church that had a general philosophy of "When the Kingdom comes". There's a thinking that "In the world tomorrow" x, y and z will be fixed. When Jesus returns, things will be made right. Many people understood the concept "correctly" but it was also used as an excuse (to many) to do nothing. No need to evangelize, no need to be kind to fellow humans, etc. I mean NOTHING.
Dan and I got married ... Christmas Day (yes, you read that right) in 1994. A week later, the church announced some major changes and the church we grew up in became splintered in several directions. So we have friends/family with hugely varying religious ideas. (Understatement).
Before we got married, we wanted to adopt. Somewhere along the way, it became clear to us that we should adopt those who wouldn't have had a family otherwise. I feel God showed us that path and we took it. At first, the choices were fairly easy. Jacob and Kaley, for example. People don't adopt kids who are African American out of the Foster system. Period. The odds are (at least in our state) that if you hit age 1, you have less than a 5% chance of ever being adopted. So it seemed a no-brainer. Along the way we discovered their medical conditions. AFTER we adopted them. But by then, they were "ours" and you just buck up and do what any parent would do.
Eventually we got to China and you can't "unsee" after you have seen something. These kids are just babies needing a home, needing warm clothes, needing a stranger to be kind to them.
Matthew25 comes readily to mind. Do this unto the "least" of these... clothe, feed, etc. If you haven't read this powerful chapter lately, you might want to reread the whole thing. The context of it is quite chilling. It talks about an ACTIVE participation. DOING, not just saying.
But bottom line ... by the end of the chapter, Jesus says to one group (the doers) "Well done, welcome to Eternal life" and the other group (the non-doers/waiters) "Depart from me, I never knew you." And I don't know about you, but that makes me WEEP. And all I know is, I have NOOO excuse. I know what I am to be doing. It is in my power to help. I must not withhold my help. And beyond that, God has equipped me to do just that. He's given me talents (also talked about in this same context) and expects me to use them to propel His Kingdom.
James 2:14-17 is another powerful section. In paraphrase ... faith without works is dead. If a person says, "Hey, I'm cold and I need a coat" and you say, "Hope you find one" ... uh, it's a problem. But I know soooo many people who do this in regards to kids who need a home. They see the need. They close their eyes and say, "I hope you find a family".
Am I saying everyone should adopt? NOOOOO ... Trust me, this road is not for everyone. But there's stuff people can do for the orphan. Mostly: Don't turn a blind eye and shut off your heart. God has probably prepared YOU to do something for His Kingdom. Do THAT.
So ... back to Manny specifically. Our family had been being prepared for a while. God even prepared our hearts for taking in a child that would not live long. (A string of converstations, trainings, experiences, etc.) I'll write that blog soon... "Why Manny".
But when Manny was presented to us, we initially said No. He was too severe. His needs were very unknown. Even his condition was unknown. And I can write out the details of the 2 weeks where we kept saying No and God kept saying Yes. (It's quite remarkable.) But ultimately, we said yes.
And by saying YES to Manny.... it was the right decision. (I know some of you might question that, and it's OK.) We would do it again in a heart beat.
With that said, to say YES to Manny meant we had to say NO to a lot of things too. I had China projects that have been put on complete hold. Our house is needing maintenance. My relationship with Dan and each of my kids is sometimes strained (like a month at a time hospital stays). Dan's business has suffered. We have said no to countless things. Life is VERY hard sometimes.
So why did we do this? For so many reasons. (Some mentioned above.) But bottom line is ... Jacob, Kaley, Sam, Luke, Zoe and Manny deserved a family. They deserve to walk out this life with people who love them. People who will fight for them. People who will teach them of God. And we wanted to be parents. A match made in heaven.
And I believe that MY role as a Christian is to do the best to walk the talk (to the best of my ability), to show God's love wherever I go. ("You shall know them because they show love to one another") And I have chosen to walk the road of adoption.
I hear all the excuses of people as to why they can't adopt. (Not sure why they feel the need to let me know their reasonings ... guilt perhaps?) But among them are cost, too old, not enough room for more, not sure they could love someone that is not their "own", time consuming, too much paperwork, fear of the unknown, etc.
I am so very thankful that God didn't use any of those excuses when He chose to adopt me! I mean I'm SURE I was costly (Jesus Christ's sacrifice comes to mind as just one of the high payments He made for me). I'm sure God is old, but never too old. He always has room for another child. I AM His "own". etc.
So why adopt? I think the better question would be "Why NOT adopt?"
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