Day 132

It's been yet another rough 24 hours for our little man. His vomiting is even worse than before, and it seems to be so much harder on him now. When he's not throwing up, he's retching and gagging, even in his sleep. It's completely heartbreaking to watch him go through this once again, and I am devastated to think that we haven't found the answers for him yet. I was so hoping that this last surgery would be the "fix" for him. :(

Adding to the mix, after retching all night and being unable to sleep, he spiked a 102 fever around midnight. We have no idea what's going on. We don't know if it's a bug he picked up here, or if he has some kind of infection going on. They collected blood for cultures in the middle of the night, and we'll see if that shows anything today. It can take 48 hours for the tests to complete, but I'm hoping that we'll be able to pinpoint something sooner. It took three tries to draw blood from a peripheral vein, since he has so much scar tissue from previous lines. I'm sure that's a common issue for a lot of these kids, but that doesn't make it suck any less.

All that to say, he's had better nights.

He finally got to sleep around 4am, and he got a little bit of rest before waking up to do it all again this morning. My poor baby just can't seem to catch a break in here! I am quickly getting back to the breaking point with frustration, and I pray we have some concrete answers soon- before I completely lose it.

Some days it's hard to find a way to sound upbeat and positive when writing an update. It's difficult to explain what goes on day to day without sounding hopeless, when sometimes it truly does feel hopeless. I do recognize and appreciate the miracles that have already come his way, but I also have to acknowledge the many struggles and trials that have come his way as well. I do try to keep things in perspective, and remember the many, many ways in which we are blessed. Some days, like today, it's harder.

So today I'll be praying for peace, healing and comfort for Holden. For understanding and patience. For faith to be reassured and hope restored.

If you happen to be on your knees today as well, we'd appreciate a prayer in his general direction.

Day 131

I don't have anything new to report, so this will be a very short update. I wouldn't even post, but I know how some people worry when I let a day go. :) Everything's about the same as it was yesterday... He's still coughing, vomiting and feeling puny off and on. We're going to try a few minor tweaks today and see what happens. I'm hoping we'll have an update filled with good news tomorrow!

Day 130

It seems like every time I get excited because Holden's had a good day, he remembers his job here and adds a new mystery the next day. The vomiting is back. Ugh. I was so hopeful that the surgeries he just went through would be the end of our puke-filled days, but life doesn't work out the way I plan most of the time. Of course, we're not sure if the vomiting is caused by the same things as before his surgery. It could be due to withdrawl, or elevated liver enzymes, or the general trauma of abdominal surgery, or the weird hacking cough he's suddenly developed... The possibilities seem endless.

Back to that cough- He's come up with a new wheezy cough the past couple of days. The coughing leads to gagging, which leads to throwing up. We can't quite figure out where the cough is coming from though. It could be caused by the drainage from the high-flow heated oxygen he's been on... It takes a lot of moisture to keep that thing humidified, and you can see it dripping out of his poor little nose. That could possibly be draining in the back of his throat and causing irritation. We convinced them to take it off today and switch him out to a regular nasal canula at a lower flow, and we're hoping that's going to help him get rid of the hacking cough. I don't know if that will eliminate the vomiting, but it's one more possibility taken out of the equation.

He's feeling pretty bad again today, even though he's had a few high points when he seems fairly happy. Overall, he's just looking puny again. His color's off, his eyes have dark circles under them and he looks like a sick kid again. I hate that for him. He's not running a fever yet, even though he's been a little warmer to the touch. Let's hope and pray that this is all just part of his healing process, and not a sign of other issues.

In good news, he's still peeing. His kidney numbers are within normal ranges, and his liver enzymes have dropped. Those aren't within normal ranges yet, but at least they're trending down. His chest xray was still clear this morning, although he's sounding junky again this afternoon. Hopefully he'll be able to clear out on his own and keep his xrays looking good!

We still have a lot to figure out, and a few more mysteries to solve. But we remain hopeful that a few weeks from now we'll be able to chalk all of this craziness up to Holden's flair for the dramatic. Somehow  he keeps fighting back and clearing the hurdles, and I know that he's going to find his fight again. There are so few true heroes left in the world today, and I am so proud that my little man is among them. He constantly amazes.

Day 129

Things are still pretty up and down in here today, but largely unchanged. His BUN and creatinine are down even more, and he's still peeing like crazy. He looks like a different kid without all of the excess fluid blowing him up! We'll check his liver enzymes tomorrow, so we don't know yet if there's any change with that. His chest xray looked much better this morning, and we'll be trying to wean him down to a more comfortable flow on his oxygen. We didn't make too many changes to his routine this morning, since things seem to be working pretty well with what we're already doing. We'll make slight changes to a couple of his meds and change the way he's fed through the tube, but everything else remains the same. We'll keep him on the milrinone for another couple of days and then put him back on his usual schedule of heart meds. He's even more alert today, and I even got a tiny half smile out of him earlier. He's not back up to full speed yet, but I think we're getting there a little more each day! Hopefully I'll have more good news to report tomorrow. :)

Day 128

I've been trying to get to this post all day, but things just kept getting in the way. Before I move on to Holden's update, I want to share a plan for Rylie's big day. For those of you who are wondering what to get her for her birthday at the end of the month, we have an easy solution. Her dad has agreed to let her get a dog, which is ALL she has wanted for what seems like an eternity. She would much prefer a sweet puppy to love over any other gift we could get her. She has worked her tail off these past months earning money to buy a dog along with the necessary extras (like the pet deposit- ouch!), and we'd love to be able to help her reach her goal for her birthday. If you're interested in contributing instead of trying to pick out a gift, please let me know and I'll send you the address to send her a card. (Honestly, how many sparkly accessories does one little girl really need anyway? :) This is a surprise, so please don't mention anything to her!

Moving on to Holden... He's had a slightly better day today. I'm not quite ready to say he's turned a corner, but he's definitely starting to peek around it. Evidently the organs in his body didn't like the decreased cardiac output he had after his surgery, but thank God for the wonder drug of milrinone! After starting the milrinone his heart function improved, and his kidneys have decided to rejoin the party. His BUN and creatinine are both back down to acceptable (if not "normal" levels), and he's been filling diapers again. We're hopeful that his liver will notice the changes soon and also decide to fall back in line.

He's been much more awake and alert today, even taking a break from napping to play with his toys in the Bumbo for a little while. He's still not himself, and we can tell he still feels pretty bad. However, we're seeing small signs of improvement, and I'll take it! I want my little man back more than anything, and today is the first day that I feel like we're moving in the right direction to make that happen.

He's sleeping now, hopefully dreaming of better days sure to come. Dream big, little man.

Again, many thanks and much love for your endless care and concern. Your love, support and encouragement help so much on the days that have seemed more hopeless than hopeful lately. Thank you for the prayers and overall good energy sent his way. We feel it, he feels it, and it heals.

Day 127

Once again, I have an overload of medical information to share, and not much good news. It's been another rough night and day around here, with Holden still uncomfortable and pitiful. He doesn't want to play, smile, drink, snuggle... Nothing really makes him happy. Of course, if I were in his shoes and hurting the way he hurts, I can't think of much that would make me happy either.

He's not as sleepy and lethargic today as he has been the previous couple of days. His glucose was really low, so he got some extra sugars this morning. That seems to have made him a little more awake and alert, although it hasn't made him any happier. Maybe he would have preferred the peaceful oblivion of sleeping his days away until all of this mess goes away. I wish I could make that happen for him. Honestly, I wish I could make that happen for all of us.

He hasn't been throwing up any more blood, and when I talked to the surgeon this morning he told me that he wasn't alarmed by the blood. As long as it's not bright red or a large amount, he's not worried until about a week after surgery. So while it's disconcerting, it's not alarming.

He was doing great from a respiratory standpoint, holding his sats up and moving good air in his lungs. The past 24 hours have brought a small backslide. He's still on high flow and high O2 concentration, but he's not holding his sats as high as we'd like. If he keeps rolling downhill, he's going to buy himself another stay on the Vapotherm. His xray was a little hazier this morning, but still not completely whited out. I'm hoping that it's just the fluid in his body affecting his lungs, and that we're able to get him to more stable ground soon.

He's started peeing a little bit more, which is good. He's not putting out as much fluid as we'd like to see, since he has so much built up to give, but any little bit is better than nothing. His kidney numbers are about the same- not great, but not getting much worse either. The doctors are pretty sure that it's his heart and not his kidneys causing the fluid retention. That's not the best news, but hopefully his heart function will improve over the next week or so. We started him back on one of the heavy duty heart meds that he was on before, and that should help his heart work more efficiently. If his heart starts to function a little better, we're hoping the rest of his body will follow.

We've been so worried about his heart, lungs and kidneys that we've kind of forgotten about the rest of his organs. It's hard sometimes to remember that he's a whole baby and not just a heart, but we got another reminder this morning. They checked his liver enzymes, and they are sky-high. The elevated enzymes are called AST and ALT, and they help measure liver function. Normal numbers for both are 10-50, and his are 2563 (ALT) and 3927 (AST). Not good. So we add something new to the puzzle, and have another organ to worry about. We don't really know why the numbers are so high, but it could be partly due to heart failure. Since most pain meds affect the liver, he won't be getting those anymore. The poor kid can't even have Tylenol now. :( If he gets to the point where he absolutely has to have something, we can give him morphine, but we're trying to avoid all of it if at all possible.

He's back to a 1A status on the transplant list again, mainly due to the heart med we restarted. The transplant team said that his elevated liver enzymes won't affect his transplant status, since it's probably a heart issue to begin with, and he's shown no markers for infection. Two of the doctors have told us today that all of this proves even more just how badly he needs a new heart. If I ever dreamed of his own heart recovering (which of course, I did), I've come back to reality now.

The only positive bit of news today is that the surgeons cleared him to begin small feeds through his gtube. He's not getting much, but he's on slow continuous feeds now. We're hoping that will help even out his glucose and energy issues, if nothing else.

So that's about all I have... I hope to have better news to post one of these days. For now we're just keeping him as comfortable as possible and praying for his body to get back on the right track. I know many of you keep him lifted in constant prayers, and I ask that you please continue. He's one brave little boy, but he's going to need a few more miracles.

Day 126

I am so sorry for the delay in posting... We've spent the afternoon putting out fires, quite literally. What was supposed to be a quick trip to the house to get some of the junk out of our car turned into firefighting school when Trent accidentally set the pasture on fire. He tried to burn a pile of trash before we left, and the wind quickly caught the flames and spread them. He had a square of carpet and I had a little shovel, and we did our best to put the fire out before it did too much damage. We did eventually get it under control (conveniently right before the fire trucks showed up), but not before it burned up some of the woods and pasture. It could have been much worse, so thank God for shovels and carpet squares!

While we fought fires, Holden continued his own battles here. I wish I could report some good news, but unfortunately he's had another rough day. He's been really uncomfortable and in a lot of pain. All he does is whine and cry when he's awake, which isn't often since he's sleeping all of the time. We've had some trouble waking him and keeping him awake, and when he does open his eyes it's so sad that I pray for him to go back to the relative comfort of sleep again. He's four days post-op, and he should be getting a little better each day... Instead, he's getting worse. The doctors are doing all they can, and everyone is thinking and praying and watching and waiting. We're about ready for a turnaround here.

The only good news is that his lungs seem to be pretty clear for now. He's still on a lot of oxygen support, and we've been unsuccessful in weaning that at all, but we haven't had to deep suction him for almost 24 hours. He's been coughing on his own a little bit more, which is a huge help.

His kidneys are still on vacation, and nothing we've done has coaxed them back. He's on a tremendous amount of diuretics, and even with extra doses we've only been able to get small amounts of fluid out of him. He should have responded much more dramatically to the extra doses, but his kidneys didn't get the memo. When we did the bladder scan last night, he only had 20 mls in his bladder. That means that the fluid in his body isn't where it's supposed to be... It's just floating around, which they call third-spacing. That third-spaced fluid needs to get back where it belongs so we can get it out of his body. His BUN and creatinine (numbers to measure kidney function) are creeping up, and if his creatinine isn't lower in the morning, we'll have to start him back on one of his heavy duty heart meds. Excess fluid puts a lot of excess strain on his heart (which is why almost all people with heart issues take "water pills", or diuretics). We don't need any new issues in the heart area, so we're praying hard that he starts peeing like he should. (If you would have told me a year ago that pee would be included in my most fervent prayers, I don't know if I would have believed you. Yet here we are.)

He's also still throwing up blood. He's not vomiting like he did before, but when he does it's rusty colored with what looks like coffee grounds in it. That's digested blood. It's also coming out of his gtube whenever it drains and coming out in his diaper with the few bowel movements he's had. At four days post-op, we would have expected the blood to disappear. I'm really hoping that this is just a little bump in the road, and not a sign of something more serious.

We knew going into this that Holden is the master at keeping us on our toes, but I'm done dancing now. If he continues this downward trend tomorrow, this paranoid freak of a Mama might truly lose it. I really keep thinking that he deserves a break at some point... Right? I'm trying hard to hold on to optimism and faith right now, but honestly, it's hard. I struggle the most on days like these. I know it will get better, but it doesn't seem like it at times. It's hard not to let hopelessness take over every once in a while. It's not a pretty admission, but it's the truth.

So please- Cross your fingers. Hold your breath. Light a candle. Spit three times. Say a prayer. Please do whatever you can to send some of that goodness his way. We would love for our feisty little man to get his fire back soon.