Holden went into surgery about 45 minutes ago. They'll attempt to place catheters for dialysis (which he desperately needs), and also check his upper and lower bowels to make sure he doesn't have dead tissue causing the sepsis in his body. The nurse just updated me, and he's still stable so far. They are attempting to place one of the catheters now.
We are so grateful for the many, many prayers lifting our little man, and we ask that you continue them. He's in a bad place right now, but he is strong. He is a fighter, and always has been. We know that miracles have been worked through him in the past... We can only pray for one more.
Thursday, July 7, 2011
Update
Holden made it through the night, but his latest numbers don't look as good as expected. We're trying one last drug, and praying it makes a difference. Thank you, everyone, for your prayers. We feel them.
Wednesday, July 6, 2011
Prayers Needed
I don't have the energy to go into a lot of detail, but today has been the worst day for all of us. We didn't even get around to the surgery, as Holden crashed shortly before and had to be intubated. The doctors worked for hours intubating him and getting more lines in (for meds and pressure readings), and then it got worse. We came so close to losing him. Holden's heart stopped six times, but compressions were able to bring him back. They had a lot of trouble stabilizing his heart and blood pressure, and he's still not anywhere near out of the woods. He's holding his own at the moment, but they're having to increase his epinephrine drip in order to keep him "stable". The doctors weren't terribly optimistic about his ability to make it through this episode and the night, but we know that there's always a chance. If he can hold his own through the night, we'll try again for the surgery tomorrow, and hope for better results. The bottom line is very, very bad. We are in a horrible place right now, and all we can do is pray. Please say a prayer for my little man tonight... He needs them now more than ever.
Tuesday, July 5, 2011
Brief Update
Holden went down for an echo and abdominal sonogram earlier this afternoon (neither one told us anything new), and when we came back, his blood pressures and temperature dropped really low. Given the severity of the rest of his problems, they wanted him to be in the ICU- just to be safe.
He has so many different things going on right now, nobody knows where to start. We're really concerned with both his liver and kidney numbers right now, and if he doesn't start peeing soon, the renal team is going to want to take more action. We're praying he starts peeing before then!
We originally thought that all of these problems might be stemming from dehydration from his c-diff infection, but that doesn't explain the elevated liver enzymes or the acute pain episodes. We know something more is going on with him, we just haven't figured out what it is yet.
Thankfully, Holden's napping in a morphine-induced stupor at the moment, so he's feeling no pain. Maybe we'll have it all figured out before he wakes up!
He has so many different things going on right now, nobody knows where to start. We're really concerned with both his liver and kidney numbers right now, and if he doesn't start peeing soon, the renal team is going to want to take more action. We're praying he starts peeing before then!
We originally thought that all of these problems might be stemming from dehydration from his c-diff infection, but that doesn't explain the elevated liver enzymes or the acute pain episodes. We know something more is going on with him, we just haven't figured out what it is yet.
Thankfully, Holden's napping in a morphine-induced stupor at the moment, so he's feeling no pain. Maybe we'll have it all figured out before he wakes up!
Here We Go Again
I don't even know where to start this time. We're back at Children's, and Holden has all kinds of crazy things going on. He hasn't really been acting right since we brought him home on Friday, and it got progressively worse through the weekend. Yesterday afternoon, he started crying and then screaming, and he didn't stop for six hours. He was clearly in a lot of pain, so we decided to bring him in to the ER. By the time we got here, he was hysterical and dripping sweat, and the pain was causing breathing issues. They got him in quickly, started an IV (not so quickly), and gave him some morphine for the pain. Thank God for the gift of morphine! He immediately calmed down and went to sleep, and the rest of the admission process went pretty well. We're on the 8th floor again, probably for a while. (And we ended up in the same room that we lived in for three months here... I don't know if I like that coincidence or not.)
They've run the full spectrum of labs on him, and the numbers are a mess. His BNP is almost 28,000 now, and we're still not sure why. He'll have another echo this afternoon to make sure his heart function hasn't deteriorated. His BUN and creatinine (kidney numbers) are both elevated- 71 and 1.0- and they've actually gotten worse since we started him on IV fluids last night. We've already talked to the renal doctors, and he'll have an abdominal ultrasound this afternoon as well. I don't know if that will show us anything, but it's worth a shot. His AST and ALT (liver enzymes) are also elevated, and we don't know why. The good news is that his electrolytes have remained fairly stable, and his amylase and lipase (pancreatic numbers) are normal. The doctors were concerned that we might be dealing with pancreatitis again, given his level of pain yesterday, but that's been ruled out. He still has the c-diff infection, and it doesn't seem to be responding to the antibiotic he's on. We'll talk to that team later today, and hopefully come up with a new plan.
So we're here again, with more questions than answers, and it's still as maddening as it's always been. We have a lot of doctors on a lot of teams working on different parts of the puzzle. I hope and pray they can find out what's going on and provide my little man with some comfort. As always, we are so grateful for your continued support and prayers.
They've run the full spectrum of labs on him, and the numbers are a mess. His BNP is almost 28,000 now, and we're still not sure why. He'll have another echo this afternoon to make sure his heart function hasn't deteriorated. His BUN and creatinine (kidney numbers) are both elevated- 71 and 1.0- and they've actually gotten worse since we started him on IV fluids last night. We've already talked to the renal doctors, and he'll have an abdominal ultrasound this afternoon as well. I don't know if that will show us anything, but it's worth a shot. His AST and ALT (liver enzymes) are also elevated, and we don't know why. The good news is that his electrolytes have remained fairly stable, and his amylase and lipase (pancreatic numbers) are normal. The doctors were concerned that we might be dealing with pancreatitis again, given his level of pain yesterday, but that's been ruled out. He still has the c-diff infection, and it doesn't seem to be responding to the antibiotic he's on. We'll talk to that team later today, and hopefully come up with a new plan.
So we're here again, with more questions than answers, and it's still as maddening as it's always been. We have a lot of doctors on a lot of teams working on different parts of the puzzle. I hope and pray they can find out what's going on and provide my little man with some comfort. As always, we are so grateful for your continued support and prayers.
Saturday, July 2, 2011
Home... For Now
We're home, but I don't know if we'll be staying... When we got home yesterday evening, Holden passed out for a few hours and then woke up screaming and crying miserably. I finally got him to sleep for the night after a very traumatic bath, and he slept until 10am this morning. We thought it was just exhaustion from the hospital stay, but now I'm not so sure.
We took him to the hospital lab this morning to check his electrolytes, BUN and creatinine. All of those numbers actually looked pretty good, but now we have new issues. After giving him fluids while in the hospital, he puffed up a little bit and stopped peeing. (This seems to be a common theme with him whenever he gets IV fluids.) He was dehydrated when we started the fluids on Tuesday, he wasn't getting full feeds while admitted, and he still has diarrhea from the c-diff infection, so we thought he just didn't have anything to pee out.
Last night, we started him on a sodium supplement to bring his numbers back up (which worked beautifully, according to his labs), but the salt in it has only caused him to retain more water. He's been so tired and out-of-sorts today, and he's been acting so miserable. When his respiratory rate went up and his work of breathing got too heavy, we had to put him back on oxygen. He hasn't had to be on oxygen support since we left the hospital for the first time back in March, so this isn't a popular choice.
Until we can get some of this fluid out of him, he's going to have trouble. I feel like we've been in this exact same position before, because we have. We prayed and did the pee dance many times during his stay in the hospital.
His stomach is starting to look a little bit distended again, which we know can be the beginning of bad things for Holden. We gave him an extra dose of diuretics this afternoon, and we haven't seen anything from it yet. We're going to try another double dose this evening, along with some sodium-free formula, and hopefully that will help turn things around for him. If not, we'll be heading back up to Children's in the morning. And of course, if he gets any worse tonight, that will mean an ER visit.
So if you get the chance this evening, please say a prayer for our little man. Specifically, please pray for pee, once again.
We took him to the hospital lab this morning to check his electrolytes, BUN and creatinine. All of those numbers actually looked pretty good, but now we have new issues. After giving him fluids while in the hospital, he puffed up a little bit and stopped peeing. (This seems to be a common theme with him whenever he gets IV fluids.) He was dehydrated when we started the fluids on Tuesday, he wasn't getting full feeds while admitted, and he still has diarrhea from the c-diff infection, so we thought he just didn't have anything to pee out.
Last night, we started him on a sodium supplement to bring his numbers back up (which worked beautifully, according to his labs), but the salt in it has only caused him to retain more water. He's been so tired and out-of-sorts today, and he's been acting so miserable. When his respiratory rate went up and his work of breathing got too heavy, we had to put him back on oxygen. He hasn't had to be on oxygen support since we left the hospital for the first time back in March, so this isn't a popular choice.
Until we can get some of this fluid out of him, he's going to have trouble. I feel like we've been in this exact same position before, because we have. We prayed and did the pee dance many times during his stay in the hospital.
His stomach is starting to look a little bit distended again, which we know can be the beginning of bad things for Holden. We gave him an extra dose of diuretics this afternoon, and we haven't seen anything from it yet. We're going to try another double dose this evening, along with some sodium-free formula, and hopefully that will help turn things around for him. If not, we'll be heading back up to Children's in the morning. And of course, if he gets any worse tonight, that will mean an ER visit.
So if you get the chance this evening, please say a prayer for our little man. Specifically, please pray for pee, once again.
Friday, July 1, 2011
Short Update
I don't have any big news to report, and we're just kind of hanging out waiting for a definite plan at the moment. His BUN has improved, but his BNP is back up to 26,500 and his sodium levels are still really low. However, his sodium has always run low, and there isn't much we can do to help lower the BNP (especially since we still don't know why it's jumped so high to begin with). I'm not really sure what they're doing here in the hospital that we can't do at home, so we're trying to push the doctors to come up with a better plan for us. We want to go home today, and the doctors want us to stay until at least tomorrow. We're praying and doing our best to change their minds. I'll update more again when we have some news, and hopefully I'll have a chance to write a more detailed post next time. Thank you again for all of the prayers and encouragement... We are grateful for all of you!
(Updated to add: Against the doctor's better judgement, we talked her into letting us go home today. We'll have to follow up with labs over the weekend and come back in if anything changes, but we're going home!)
(Updated to add: Against the doctor's better judgement, we talked her into letting us go home today. We'll have to follow up with labs over the weekend and come back in if anything changes, but we're going home!)
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