It feels like a lot has happened since I last updated, yet I don't have any real updates... It's a strange feeling.
We kept the ng tube out all weekend, and of course Holden loved it. He didn't have any vomiting episodes (besides the ones we induced by gagging him with meds), and he was just a different kid in general. You can tell how much he's affected by the tube, poor baby. We did have to put it back in last night, since he didn't eat enough to make up for the calories lost in his tube feeds. Again, that part never stops sucking. Trent and I were both near tears having to put the stupid thing back in. Of course, once he had the tube back in, he started vomiting again. I think our answer has been made more than clear- The tube is the problem.
He was scheduled to have a ph probe test done today, to see if his reflux was bad enough to need a fundo procedure done along with the gtube. (The fundo- or Nissen- basically wraps the stomach around the esophagus and makes the patient unable to throw up.) After researching it over the weekend, we decided we were against him having that particular procedure done. The procedure has mixed results, and many times it causes more problems than it solves. Lord knows we don't need any new issues!
After having the ng tube out all weekend, we know for a fact that he only has reflux/vomiting when the tube is in place. The ph probe would come back positive, even if he doesn't necessarily have reflux without the tube. Since the probe will send back a false positive, and since we already know we aren't doing the fundo, we're not going to do this last test. The GI doctor we spoke to this morning is completely on the same page. Holden will only be having the Ladds procedure and the gtube placed in surgery. Now we'll just wait for the doctors to coordinate and set a date. We hope to have something set by tomorrow, but we'll see.
I don't write a lot about my other two equally fabulous kids on here because this is Holden's blog, meant to follow and document his journey. However, Kaitlyn- my oldest, needs a few extra prayers this week. She has a major test tomorrow, for something she really wants. I know that all will work out how it's supposed to, but please say an extra prayer for her this week if you happen to be praying for our family. As always, thank you. We are truly grateful to be so very blessed!
Monday, February 28, 2011
Saturday, February 26, 2011
Day 118
I started out with the intention of updating this blog every single day, but good intentions don't always lead to action. I don't have a lot to report anyway, so nobody missed much. We spent the rest of the week running various tests, trying to cover all of our bases before scheduling a surgery. Holden was so excited when we headed out of the room each time, probably wondering what treat we had in store for him, only to be strapped down in every machine the hospital has to offer. It couldn't have been a fun week for him, but of course he was amazing through all of it... He always is. To say this kid is a trooper would be the understatement of the year.
None of the tests we've run have shown anything yet. Again, we didn't really expect them to, but there was always the little hope that we'd find something obvious and easily fixable. Of course, there are never easy answers with my little Riddler, and I need to remember that! The last test we'll run is on Monday, and that one won't be over until Tuesday morning. Once we have the results back from that, we'll schedule his surgery and start praying.
He pulled his feeding tube out last night (again), so we decided to leave it out for 24 hours to see how he does without it. The good news is he's not throwing up... The bad news is that he doesn't (can't?) eat enough to keep the tube from going back in. I dread putting that wretched tube back down his nose and throat, but I know he can't survive without it. The tube is yet another thing I have a love/hate relationship with in here.
He's been through much worse, and will likely face down bigger and badder demons again. It almost seems silly to worry about a stupid little tube. But worry is what I do. I've gotten really good at it. I have to catch myself sometimes before the worry turns into a full blown panic attack. Nothing comes easily for him in here, and I want to do any small thing I can to make his life just a little bit better.
But you know, Holden's not really worried about the quality of his life... He wakes up ready to live each morning, like he knows what a gift it is. This is all he knows, and he wakes up with a smile for the world every single day. There is no substitute for genuine love and happiness in life's toughest moments. We adults forget that sometimes, but Holden is already wiser than most. The kid is pure joy. So today I'm enjoying my bare-cheeked boy, stealing all the kisses I can before those perfect cheeks are hidden again behind tubes and tape.
We watch. We wait. We hope for the best. And we pray.
None of the tests we've run have shown anything yet. Again, we didn't really expect them to, but there was always the little hope that we'd find something obvious and easily fixable. Of course, there are never easy answers with my little Riddler, and I need to remember that! The last test we'll run is on Monday, and that one won't be over until Tuesday morning. Once we have the results back from that, we'll schedule his surgery and start praying.
He pulled his feeding tube out last night (again), so we decided to leave it out for 24 hours to see how he does without it. The good news is he's not throwing up... The bad news is that he doesn't (can't?) eat enough to keep the tube from going back in. I dread putting that wretched tube back down his nose and throat, but I know he can't survive without it. The tube is yet another thing I have a love/hate relationship with in here.
He's been through much worse, and will likely face down bigger and badder demons again. It almost seems silly to worry about a stupid little tube. But worry is what I do. I've gotten really good at it. I have to catch myself sometimes before the worry turns into a full blown panic attack. Nothing comes easily for him in here, and I want to do any small thing I can to make his life just a little bit better.
But you know, Holden's not really worried about the quality of his life... He wakes up ready to live each morning, like he knows what a gift it is. This is all he knows, and he wakes up with a smile for the world every single day. There is no substitute for genuine love and happiness in life's toughest moments. We adults forget that sometimes, but Holden is already wiser than most. The kid is pure joy. So today I'm enjoying my bare-cheeked boy, stealing all the kisses I can before those perfect cheeks are hidden again behind tubes and tape.
We watch. We wait. We hope for the best. And we pray.
Wednesday, February 23, 2011
Day 115
After running a couple of tests and talking to a lot of doctors today, we've come up with what could be a tentative plan. (We actually don't have anything nailed down, but we're talking about it, which is progress from two days ago.)
We had changed his feeds back to bolus feeds every three hours, hoping that going back to his basics would decrease the vomiting even if slightly. That plan was a fail. He's still throwing up just as much as before, so we know that adjusting feeds isn't going to solve anything. (I could have told them that, as we've tried that approach for three months now, but I guess they need to earn their paychecks. :)
He had an abdominal ultrasound and a small bowel follow-through done this morning. Neither showed anything significant that could be causing so much trouble. Our next tests are a gastric emptying scan and a ph probe in his esophagus, and those will be run later this week and Monday. The GI doctor said she might throw in a couple of extra tests (just for fun, I guess?), but those are the only ones set for now. We'll have to wait and see what those show us.
They brought Holden's case up in the surgical conference this evening, and it looks like we are back on the surgery board. We all feel like at least some of his issues are being caused by the NG tube itself, and that part of the problem can be solved by putting a feeding tube (or g-button) directly into his stomach. If you'll remember, the doctors really didn't want to do any surgeries at all until his transplant, since they don't know what his own heart can actually handle. However, the more everyone discussed it, the more concerned we all grew with putting surgeries off until after transplant. He'll be immunosuppressed his entire life after he gets a new heart to keep him from rejecting it. Even minor surgeries become a much bigger deal in a transplant kid, and the risk/benefit ratio seems to point to doing the procedures now. They'll want to take care of all of his issues at once, so along with the button he'll also get the Ladds procedure to correct his malrotated intestines. If they find any other issues, we'll try to correct those at the same time as well.
We all feel like Holden is in a much better place now than he was for his last surgical procedure. (His last procedure was to take the PD cath out, and he crashed pretty hard and ended up back on the oscillating vent after that one... That's why everyone is so cautious and hesitant to do another surgery. Nobody can say for certain just how much his heart can take.) His main surgeon stressed that he wants every test and scan possible run before we schedule him for a surgery, for two reasons. 1. We need to make sure that we're not missing anything at all that could be causing all of this. Nobody thinks we're going to find anything on the tests, but we're going to run them anyway because 2. The surgeons don't want any surprises. They've already learned that we can count on my little man to find the most remote odds and capitalize. He has never played by the rules, so they want to know what they're getting into before they get into it.
I wish we had an actual "plan", like dates and times set in place, but I'm okay with having a general direction for the time being. We won't finish with his tests and scans until early next week or later, so we won't schedule anything until then. It is such a relief to have an idea of where we're heading, instead of just idly passing the time away in here. None of these are the answers I wanted, as I really don't want to send him back to another surgery, but we'll just do what we do in here and roll with what comes. I think Holden's game for whatever we decide to do... He's far tougher and braver than I am. This kid can do anything- All we have to do is give him the chance to prove it!
We had changed his feeds back to bolus feeds every three hours, hoping that going back to his basics would decrease the vomiting even if slightly. That plan was a fail. He's still throwing up just as much as before, so we know that adjusting feeds isn't going to solve anything. (I could have told them that, as we've tried that approach for three months now, but I guess they need to earn their paychecks. :)
He had an abdominal ultrasound and a small bowel follow-through done this morning. Neither showed anything significant that could be causing so much trouble. Our next tests are a gastric emptying scan and a ph probe in his esophagus, and those will be run later this week and Monday. The GI doctor said she might throw in a couple of extra tests (just for fun, I guess?), but those are the only ones set for now. We'll have to wait and see what those show us.
They brought Holden's case up in the surgical conference this evening, and it looks like we are back on the surgery board. We all feel like at least some of his issues are being caused by the NG tube itself, and that part of the problem can be solved by putting a feeding tube (or g-button) directly into his stomach. If you'll remember, the doctors really didn't want to do any surgeries at all until his transplant, since they don't know what his own heart can actually handle. However, the more everyone discussed it, the more concerned we all grew with putting surgeries off until after transplant. He'll be immunosuppressed his entire life after he gets a new heart to keep him from rejecting it. Even minor surgeries become a much bigger deal in a transplant kid, and the risk/benefit ratio seems to point to doing the procedures now. They'll want to take care of all of his issues at once, so along with the button he'll also get the Ladds procedure to correct his malrotated intestines. If they find any other issues, we'll try to correct those at the same time as well.
We all feel like Holden is in a much better place now than he was for his last surgical procedure. (His last procedure was to take the PD cath out, and he crashed pretty hard and ended up back on the oscillating vent after that one... That's why everyone is so cautious and hesitant to do another surgery. Nobody can say for certain just how much his heart can take.) His main surgeon stressed that he wants every test and scan possible run before we schedule him for a surgery, for two reasons. 1. We need to make sure that we're not missing anything at all that could be causing all of this. Nobody thinks we're going to find anything on the tests, but we're going to run them anyway because 2. The surgeons don't want any surprises. They've already learned that we can count on my little man to find the most remote odds and capitalize. He has never played by the rules, so they want to know what they're getting into before they get into it.
I wish we had an actual "plan", like dates and times set in place, but I'm okay with having a general direction for the time being. We won't finish with his tests and scans until early next week or later, so we won't schedule anything until then. It is such a relief to have an idea of where we're heading, instead of just idly passing the time away in here. None of these are the answers I wanted, as I really don't want to send him back to another surgery, but we'll just do what we do in here and roll with what comes. I think Holden's game for whatever we decide to do... He's far tougher and braver than I am. This kid can do anything- All we have to do is give him the chance to prove it!
Tuesday, February 22, 2011
Day 114
I think perhaps this post should have been titled "How to Lose Friends and Alienate Doctors". Evidently I needed to act like a toddler to get my way. My temper tantrum yesterday morning didn't win me any fans with our current group of doctors (I'm assuming this based on the fact that they didn't come by to see us today), but it did seem to get the ball rolling a bit in other areas. The GI doctors came back in today, and between the two that we spoke with, I think we have the beginnings of a plan. We're going to be running quite a few more tests over the next week, to see if we can better pinpoint what's causing all of Holden's issues. We may or may not learn anything, but at least I'll feel like we're making some progress. (Or at least effort.) I won't go into all of the testing details now, but I'll update more as he has them. I'm praying for answers, or at least some insight... I would love to have both!
And sweet Ren has posted more of Holden's photos on her Facebook page. I'm tagged in a few of them, but if we aren't friends on Facebook you can go to Ren's page to view them. I think they're pretty fabulous, but I'm not at all biased. :)
And sweet Ren has posted more of Holden's photos on her Facebook page. I'm tagged in a few of them, but if we aren't friends on Facebook you can go to Ren's page to view them. I think they're pretty fabulous, but I'm not at all biased. :)
Monday, February 21, 2011
Day 113
Nothing new to report, besides the fact that we have nothing new to report. Grr... SO frustrating!! Poor Holden has had a rough 24 hours. He was awake gagging and vomiting for most of the night and morning. He finally went to sleep around 11am and is still sleeping. He's woken up a couple of times to cry a little bit, even when we tried to pick him up and rock him, but then rolled right back over to sleep. This is all starting to take its toll on him, and I pray that we find the answers soon!!
Our usual group of doctors came in this morning, and I may have vented a little of my frustrations... Just maybe. I'd be surprised if they don't walk to our door with dread every morning after having to deal with us for so long! My main grievance is that nothing seems to be getting any better or different. We have a good day or two, or even just a few good hours, and then it goes right back to where we were. When the doctor mentioned keeping the "plan" the same for a few more days to see how he handles it, I may have lost it a little bit. Our "plan" is clearly not working, and we already know how he handles it- he doesn't. We keep doing the same thing over and over again, expecting a different result. (Isn't that one of the definitions for stupidity?) At what point do we change the "plan"?? What else are we doing to figure out what the root cause is? Are the doctors here out of ideas? Do we need to take him to a different hospital? These are the questions I had for our doctor this morning. (Let me add that this poor doctor has only had us for three days now... He's suffering for the weeks upon weeks of irritations, letdowns and defeats. Poor guy!) I wasn't trying to threaten them with taking Holden elsewhere, but we may be getting to the point where we need to consider it. Something needs to change... Something has to give. He assured me that Holden will be discussed at their conference Wednesday, where all of the brilliant minds in the area get together, and urged me to be patient until then. Hopefully we'll have some answers, or at least a new "plan" by Wednesday night. I'm content to stick with the status quo until then, but not much longer.
Lastly, many of you have been asking about Holden's pictures... Ren is going to deliver them sometime this week, and I can promise you'll be overwhelmed with pictures once I have them in hand. I've been able to view them already, and they are fabulous!
Our prayer requests today are pretty simple... Please pray for Holden's comfort, wisdom for all of his many doctors, and peace (along with sanity) for Trent and myself. As always, thank you!!
Our usual group of doctors came in this morning, and I may have vented a little of my frustrations... Just maybe. I'd be surprised if they don't walk to our door with dread every morning after having to deal with us for so long! My main grievance is that nothing seems to be getting any better or different. We have a good day or two, or even just a few good hours, and then it goes right back to where we were. When the doctor mentioned keeping the "plan" the same for a few more days to see how he handles it, I may have lost it a little bit. Our "plan" is clearly not working, and we already know how he handles it- he doesn't. We keep doing the same thing over and over again, expecting a different result. (Isn't that one of the definitions for stupidity?) At what point do we change the "plan"?? What else are we doing to figure out what the root cause is? Are the doctors here out of ideas? Do we need to take him to a different hospital? These are the questions I had for our doctor this morning. (Let me add that this poor doctor has only had us for three days now... He's suffering for the weeks upon weeks of irritations, letdowns and defeats. Poor guy!) I wasn't trying to threaten them with taking Holden elsewhere, but we may be getting to the point where we need to consider it. Something needs to change... Something has to give. He assured me that Holden will be discussed at their conference Wednesday, where all of the brilliant minds in the area get together, and urged me to be patient until then. Hopefully we'll have some answers, or at least a new "plan" by Wednesday night. I'm content to stick with the status quo until then, but not much longer.
Lastly, many of you have been asking about Holden's pictures... Ren is going to deliver them sometime this week, and I can promise you'll be overwhelmed with pictures once I have them in hand. I've been able to view them already, and they are fabulous!
Our prayer requests today are pretty simple... Please pray for Holden's comfort, wisdom for all of his many doctors, and peace (along with sanity) for Trent and myself. As always, thank you!!
Sunday, February 20, 2011
Day 112
I'm sorry for the delay in posting- we've had a busy weekend, yet not much has changed. Please know that as far as this blog goes, no news is good news! I don't have much to report, as we're still in about the same place as we were last week, and the week before that... Holden seems to be throwing up a little more today, and he doesn't seem himself. I'm not sure why, but something's going on with him. Please pray that it's just a passing thing, and that it will be gone tomorrow! Otherwise he's doing pretty well off of the oxygen support during the day, and only needing it at night. At least we're seeing improvement in one area... It's certainly better than nothing!
We had gotten our hopes up a little bit at the thought of maybe going home this week, but when we look at everything that still has to be done, I think it will be some time yet before we're able to leave. The last thing I want is for us to settle in at home and then end up back here in the hospital, so I'd really like to have as much resolved as possible before we're discharged. That said, there are some things that could take months to sort out, if we ever get it all sorted out, so I know that we'll be going home with many unanswered questions regardless.
All of your prayers and support mean the world to us, and I don't share that often enough. There are many days when this seems like an endless ordeal, and your sweet words have lifted me up. Even if I don't have time to respond to everyone individually, please know that we read every comment and message, and we are humbled and grateful every day. So thank you thank you thank you, with all of my heart!!
We had gotten our hopes up a little bit at the thought of maybe going home this week, but when we look at everything that still has to be done, I think it will be some time yet before we're able to leave. The last thing I want is for us to settle in at home and then end up back here in the hospital, so I'd really like to have as much resolved as possible before we're discharged. That said, there are some things that could take months to sort out, if we ever get it all sorted out, so I know that we'll be going home with many unanswered questions regardless.
All of your prayers and support mean the world to us, and I don't share that often enough. There are many days when this seems like an endless ordeal, and your sweet words have lifted me up. Even if I don't have time to respond to everyone individually, please know that we read every comment and message, and we are humbled and grateful every day. So thank you thank you thank you, with all of my heart!!
Thursday, February 17, 2011
Day 109
Today was Dr. Lemler's last day of rotation on our floor. As he was saying his goodbyes, he casually mentioned that they might be thinking about sending us home late next week. We had been told that we could start thinking about going home before, but this was the first time a doctor put a timeline on it for us. Any surgeries that we would put him in for are on hold for at least a month while he gets a little stronger, and they don't see any reason to keep us here that long while we're waiting. Of course, we expect to be back soon- either for his abdominal surgeries or his heart transplant, but it would be such a blessing to have a reprieve from the hospital for a little while. I don't think I've even processed it all yet- We could be going home!!! We handle most of Holden's care in here anyway, and theoretically we could do the same thing at home.
I think I'm excited, but mostly terrified. Handling his care in here means that a competent doctor is only a page away if/when I screw something up. At home, we'll be on our own. Don't get me wrong- this is what we've hoped and prayed for since day one. I'm just not sure we're qualified to be wholly responsible for the little man's care. It's difficult enough to take a baby home from the hospital, but taking a baby home who has such widespread issues completely paralyzes me with fear. I pray that we are strong enough to handle the transition and not forget anything terribly important- like the meds that keep his heart working.
The fact that we're even talking about going home in the near future is an answered prayer- nothing short of a miracle. Holden has already earned a lifetime of being a complete hero in my eyes. He is hope. He is joy. He is rocket-propelled potential.
Overall, I am filled with hope for the future along with a heavy dose of fear. I am hopeful for a future full of "near normal" days for Holden. I am hopeful for many years ahead of watching my son grow into a man, of learning who he is and who he will become. I am hopeful that he will have the chance to pay forward the miracles and kindnesses that have been gifted to him.
But there is also the reality of having a son with a broken heart and the unknown that comes with that- How long will he have to wait for his gift of life? How long will his own heart last? What kind of long-lasting effects can we expect from the devastation of his first year? How can I ever stop watching him and worrying about what's going on in that perfectly imperfect body of his, waiting for another shoe to drop? Riddle me that, Batman...
I want my son to grow up and lead a "normal" life, whatever that is... I want him to grow up and marry a girl who I won't think is good enough for him, and have children of his own. I want him to feel for himself how much a heart can expand when you become a parent. I want him to have the chance to make mistakes and learn from them, and become a stronger man of God because of them. I would be lying if I said the fear of never getting to see these milestones in his life doesn't wear me down some days.
It's easy for outsiders to look at him and think he has never been sick a day in his life. It's easy to look at him with clothes on and never know how many days of his first year were spent in a hospital, and how much he had to go through to have a chance at life. He is one year old, and already he has scars that will never heal. I have moments of overwhelming sorrow for what Holden has already been denied at such a young age. I have moments of complete fear that each day might be the day his heart will stop working before we're able to put a shiny new heart in his sweet little body.
But for the most part I am learning to move past the fear and the sorrow. Some days I'm successful, some days I'm not. I am learning to live, love, laugh, and remember every single day to drop to my knees in thanks. I'm a work in progress, but I'm getting better at it every day.
I am truly thankful for the many blessings that are mine, and I thank God each day for loving us enough to give us the chance to love Holden.
God is good, all the time!
I think I'm excited, but mostly terrified. Handling his care in here means that a competent doctor is only a page away if/when I screw something up. At home, we'll be on our own. Don't get me wrong- this is what we've hoped and prayed for since day one. I'm just not sure we're qualified to be wholly responsible for the little man's care. It's difficult enough to take a baby home from the hospital, but taking a baby home who has such widespread issues completely paralyzes me with fear. I pray that we are strong enough to handle the transition and not forget anything terribly important- like the meds that keep his heart working.
The fact that we're even talking about going home in the near future is an answered prayer- nothing short of a miracle. Holden has already earned a lifetime of being a complete hero in my eyes. He is hope. He is joy. He is rocket-propelled potential.
Overall, I am filled with hope for the future along with a heavy dose of fear. I am hopeful for a future full of "near normal" days for Holden. I am hopeful for many years ahead of watching my son grow into a man, of learning who he is and who he will become. I am hopeful that he will have the chance to pay forward the miracles and kindnesses that have been gifted to him.
But there is also the reality of having a son with a broken heart and the unknown that comes with that- How long will he have to wait for his gift of life? How long will his own heart last? What kind of long-lasting effects can we expect from the devastation of his first year? How can I ever stop watching him and worrying about what's going on in that perfectly imperfect body of his, waiting for another shoe to drop? Riddle me that, Batman...
I want my son to grow up and lead a "normal" life, whatever that is... I want him to grow up and marry a girl who I won't think is good enough for him, and have children of his own. I want him to feel for himself how much a heart can expand when you become a parent. I want him to have the chance to make mistakes and learn from them, and become a stronger man of God because of them. I would be lying if I said the fear of never getting to see these milestones in his life doesn't wear me down some days.
It's easy for outsiders to look at him and think he has never been sick a day in his life. It's easy to look at him with clothes on and never know how many days of his first year were spent in a hospital, and how much he had to go through to have a chance at life. He is one year old, and already he has scars that will never heal. I have moments of overwhelming sorrow for what Holden has already been denied at such a young age. I have moments of complete fear that each day might be the day his heart will stop working before we're able to put a shiny new heart in his sweet little body.
But for the most part I am learning to move past the fear and the sorrow. Some days I'm successful, some days I'm not. I am learning to live, love, laugh, and remember every single day to drop to my knees in thanks. I'm a work in progress, but I'm getting better at it every day.
I am truly thankful for the many blessings that are mine, and I thank God each day for loving us enough to give us the chance to love Holden.
God is good, all the time!
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