Wednesday, March 30, 2011

Slow and Steady

Today started out much like every other day at home... I "woke up" (if you can actually call it waking up after not really going to sleep) mad at the world, sleep-deprived and overwhelmed. We still haven't really settled into a routine here, and we're trying to coordinate all of Holden's home medical needs and therapists with his many appointments and command appearances outside of our little bubble. I started the day in a pretty depressing mood. I snapped at my husband, threw things around with a little more force than necessary and sulked by myself outside for a little while. (In case you're wondering, it's spelled b-r-a-t.)

However, my day ended on a good note after reading through some messages and emails when I got online this evening. Our lives are filled with the most kind-hearted, loving, generous people on the planet. We don't deserve them, but I am thankful for them all the same. You will never know how much I needed that pick-me-up today, and I am beyond thankful for the many blessings in our lives. This life isn't all rainbows and roses, but blessings can be found all around us.

We are slowly adjusting to our new version of normal at home. We spend most of our days around here either pulling out medications, measuring them or pushing them. He takes more meds now than he's supposed to take after his transplant, and that is a LOT of meds. I was thinking about those meds this morning as I was trying to measure and cursing them. I thought about how much of our lives revolve around them. Truly, everything in our day revolves around medications. And yet, each one is a parent's hope, a baby's future. Each one of them helps my baby live to see another day. When I think about it like that, it's hard to complain about the chore of dispensing meds.

Holden seems to be adjusting a little better each day, even seeming happy for short periods of time. He's still throwing up enough to break my heart for him daily, but that's nothing new for him. He has another ear infection, and we're going to his doctor's office in the morning, where he'll probably have to get an antibiotic shot to start his day off. Poor kid.

Overall, he's seeming happier. I'll be satisfied when the smile on his face is more of a permanant thing, but I'm content with making steady progress for now. I'm sure my disappointments are more about setting my expectations too high than anything, but I refuse to set them any lower. He deserves to have the bar set high for him.

I think we set the bar lower for him too often because of all that he's been through, and maybe that's a mistake. It's hard when I've been thinking so much lately about how much Holden has missed, and is still missing out on. Trent tried to take him for a tractor ride last night, which he used to adore, but now the tractor terrifies him. It's another small thing, especially in the big picture of the miracle that is Holden's life, but it gets me down regardless. I feel like we should be providing extra happiness somehow, to make up for all that he's lost, but I realize that's not even possible. I'd settle now for just a little bit of normal happiness. Inside of that beaten little body is a little boy crying to get out, and I'm more determined than ever to help him find his way.

Life is short, but wide. Holden's journey only makes it wider.

Sunday, March 27, 2011

Home again, home again...

I guess I should start off with an apology for not updating for so long. In the chaos of getting home and settled in, securing internet access was pretty low on the priority list. I was surprised by how much I've missed having a daily account of the little details of our lives, however mundane or horrible those details were. I know many of you have missed the daily updates as well, and I'm sorry! Please know that if anything major happens with Holden, I will ask someone else to post on here so that everyone is kept in the loop. Otherwise, consider no news good news.

He's still puking, which isn't really an update. He had been doing so much better, and I was loving that for him, but the past couple of days have been rough. The vomiting has returned in full force, and that's even after we reduced the rate on his feeds a little bit. I don't know if it will ever end for him. Ugh.

Our biggest problem with coming home seems to be an adjustment issue. The hospital is the only home Holden has known for almost five months- more than a third of his life. I thought he might remember his real home, especially the things he loved most here, but he doesn't remember anything and it terrifies him. He is constantly freaked out by every little thing, and he's just had a really tough time adjusting. It does seem to be getting a little better each day, but we've spent most of our days and nights up to now trying to comfort him. He's scared enough of the house itself, and when we add visitors to the mix, he is out. He gets so scared of anything new that he screams and shakes with fear. It is the most pathetic and heartbreaking thing I've ever seen.

He's gotten so used to Trent and I always being within feet of him, because we didn't have a choice in a 12x12 hospital room. We can't even leave the room for a second before he starts screaming like someone is ripping him apart. It doesn't matter who's holding him or where we are, he wants us both in sight at all times. Of course, it's not a hardship to spend all of our time with him, but eventually nature calls! I hope he'll grow more confident in his surroundings as time passes.

He's also not a fan of the bathtub. And when I say not a fan, I mean NOT a fan. I thought he'd love being able to play in the water, but he doesn't love anything about bathtime now. I know it's a small thing, but that alone makes me want to cry. There are so many little things that break my heart for him each day. He has been denied so many normal baby things, and it's just not fair. I know life isn't fair, I've learned that lesson many times over. But it seems like such a cruel twist that Holden's had to learn that lesson at such an early age.

We took him to his pediatrician on Friday, then to get labs drawn. We never got a call that afternoon, so I guess we're to assume that everything was okay. I've gotten so used to knowing all of the numbers that I'm having a bit of a panic attack not knowing them now. I just have to get to tomorrow, when everything's open again!

I've finally gotten everything unpacked and put away, although I still have a mountain of medical equipment to put away properly. I cannot stand being disorganized in the least little bit, and the chaos is driving me insane! I'll get to it soon enough, I guess... I'm spending more time holding the little man than anything right now, and that's just fine by me.

We're slowly adjusting to our new routine here, with meds scheduled around the clock and feeding bags needing to be refilled in the middle of the night. I know I survived this sleep deprivation when he was a newborn, but there wasn't so much riding on me then! I'm constantly in a state of thinking I've forgotten something, and it's maddening. That should get better with time, right?

Once again, the only place Holden seems really at ease is outside in the sun, riding in his beloved stroller. We managed to zip-tie a pole to the side of the stroller and rig a coat hanger in it to act as an IV pole outside. (Credit can be given to Daddy for that one.) It may look a little white trash, but it gets the job done!

I'm hoping and praying that Holden adjusts to his "new" home a little better this week. I was so sure that home, sunshine and tractor rides would be just what he needed to lure him around a corner, but that hasn't happened yet. I want my happy boy back. I'm ready for my baby to have a little peace in his life. He deserves that much.

Wednesday, March 23, 2011

Day 143- Homeward Bound

We've spent the past 24 hours preparing to take our baby home, and it has been a whirlwind! We have all of the supplies we'll need (hopefully), and we've consulted with our many different teams of doctors to set up appointments in the next few weeks. I'm in the process of packing up the last of our things now, and we're hoping to get to leave after his "going home" party at noon. (One of the doctors brought cupcakes for a party... I think everyone else is just as excited as we are!) I'm sure today will be bittersweet, as we've lived here for so long, but I'm looking forward to getting to know our home again! I won't be able to blog daily, since our internet connection at home is sketchy at best, but I will try to update as often as possible. As always, thank you all for your support, encouragement and prayers. We've appreciated all of you, more than you could know. :)

Tuesday, March 22, 2011

Day 142- HOME tomorrow!

Our big news of the day? Well... We're going HOME tomorrow! (As long as Holden's labs, specifically his BUN, come back with the right numbers in the morning. And as long as the home health companies deliver all of the correct supplies today, as promised. But those are just details. :)

One hundred and forty-three days after checking in for his first surgery, we're taking our baby home. Can you believe it? I can't.

I am excited and terrified and incredibly thankful for the blessings that are ours. And yes, despite all of the hardships and setbacks, we are blessed.

Tomorrow we'll be out the door and on our own. All of us growing up bit by bit. Becoming more confident in our judgment. More confident in our little man’s ability to hold his own. And I'll bet that he'll do more than hold his own... This kid is going to fly.

So good bye, CMC. You've given us nightmares and miracles. You've been a comfort. Overpriced and worth every penny. We’ve hated you. We’ve loved you. We’ve needed you. We will miss you.

Sunday, March 20, 2011

Day 140

Now that we have a plan in place for going home, impatience is quickly setting in. I can't believe we're about to call the first act of this beautiful nightmare complete. I can't believe it, trust it, or really begin to breathe myself. I feel like we've been climbing mountains for the past five months. Now we've climbed our latest mountain of sand and we will do our best to stay on top until the ground starts changing underneath our feet again.

With each passing day, we see a little bit more of our boy emerging. It's so much easier for him to embrace happiness when it's not interrupted by constant vomiting, raging fevers and the burning of healing scars. He gets a little bit better every day, in all areas, and I couldn't be more thankful.

We'll be back as guests in this same place soon, when he gets the gift of a new heart. But until then, the world is ours.

Progress. It is sure and steady and remarkable. It will be even more remarkable at home.

Hospitals are not true places of healing. They are places of fixing. Of brilliance. Of life-saving miracles. But nobody leaves a hospital healed. While we are feeling grateful beyond belief, none of us feel healed.

Real healing comes when the spirit feels safe. Home is magic. Family and familiarity and routine. Our smells. Our people. Our space.

The theory is that he may do better outside the hospital than in. Freedom, fields, tractor rides, sunshine... It all leads to a sunnier attitude. It all goes into the mix of healing and overall happiness. I think it's a good theory.

This adventure we're on with Holden has mostly been a nightmare up to this point, with a few joyful moments in the middle. But I continue to believe that he can weave this story into something magical.

All eyes are on you to make it the best fairy tale ever imagined, Holden- fight on.

Friday, March 18, 2011

Day 138

For the first time in a very long time, I feel really optimistic about going home soon. Holden decided to pick a day for a turnaround, and we're in a much different place than we were last week. His vomiting hasn't stopped completely, but it's much more manageable now. He's still coughing and junky, but I think we're on the tail end of that as well. Overall, he feels SO much better, and we almost have our baby back... All 8 kilos of stubborn boy. :)

We spoke with the doctors this morning regarding a realistic plan for getting him home. We have a few hurdles to jump before discharge, but the issues are nothing too major or unattainable. We'll be working on all of that in the next week, and then it's time to pack! (As long as Holden cooperates, and we're praying hard that he will.)

The past couple of weeks, I think Trent and I both got caught up in the depression and hopelessness of what was happening with Holden. With every new setback, our dream of taking him home to wait for his transplant seemed more and more unreachable. I think somewhere along the way, we forgot how many miracles had already been gifted to him. We forgot to have faith that more were sure to come. Holden never forgot that, and he never stopped fighting. Of course, his fight isn't over yet- not by a long shot- but I have more faith than ever that he will come out the winner in this battle.

I've said it before, and I'll keep repeating as necessary... Prayers are answered. Hope is rewarded. Holden never forgot what we should have remembered every single day- An optimistic spirit heals.

We are beyond grateful for your unending prayers. We felt them, every day, and I am on-my-knees grateful.

It's time for greener pastures- literally- so watch out, world. Holden's headed your way. :)

Thursday, March 17, 2011

Day 137

Our exciting news for today is that we'll be moving to the floor again sometime this morning. Holden seems to be doing better, and he's vomiting much less than he was. His oxygen requirements are still pretty high and his lungs still sound junky, but we're in a much better place than we were a week ago! He's been awake and flirting with nurses all morning, so I know he feels at least a little bit better. I'm hoping this is step one on our path home, but I don't want to be overly optimistic. I'll try to post a more detailed update soon!

Wednesday, March 16, 2011

Day 136

I don't have anything major to add to yesterday's post, but I didn't want to worry anyone by skipping a day. He feels a little bit better today, and he's more active and alert. He's vomiting a little bit less, but his cough and lungs still sound pretty bad. Overall, not much has changed, but I feel like maybe he's on an upswing. I'm hoping and praying, at least!

Tuesday, March 15, 2011

Day 135

We were hoping that our doctors would have something brilliant worked out, but they seem to be as stumped as we are. I don't have much new to add since yesterday, unfortunately. His fever hasn't spiked again, but we're also keeping him dosed around the clock with Tylenol. The cultures we sent off didn't show anything, so we're cleared from isolation/contact precautions. The negative cultures also mean we still don't have any answers. We know something is going on, but we don't know what.

He does seem to be doing a little better today (and I hesitate to type that, since I always seem to jinx it), but he's nowhere near all better. He's been more alert this morning than he has been for the past week, and he doesn't seem to be hurting as much. Hopefully, whatever was going on has passed through his system, and now we can concentrate on getting him better.

His vomiting was back in full force this morning as well, and he wasn't really coughing that much when it hit, so I don't know if we can blame the throwing up on his coughing anymore. Our GI doctor is out of town for spring break, so we won't talk with him until next week. We could get a consult from another doctor, but we're not sure how productive it would be to involve yet another doctor who doesn't really know what's going on. We're going to do another upper GI study to see if that shows anything, and just try to manage the vomiting as best as we can until next week. The attending on the floor this week seems to think it's something like Cyclical Vomiting Syndrome, but he always adds the disclaimer that GI is in no way his specialty.

Everyone seems to have a lot of ideas, but no concrete answers. I'm praying for those answers to come soon, and I hope to have an even better update for tomorrow. Thank you again for your prayers and encouragement. I can't tell you how much they mean to us!

Monday, March 14, 2011

Day 134

One of these days, it has to get better, right? Poor Holden... He's had a horrible night and morning so far. We still don't know if he's caught something viral, if he has a bacterial infection, or if this is all related to something else. Everything is so jumbled and confusing right now.

I think we've figured out the retching. (Maybe.) It seems like he's retching when he's trying to cough and it hurts him, so he holds back a little bit and it comes out as gagging? That's our guess right now, but who knows. We're still going to talk to the GI doctor today, but it may not even be a GI issue at all. Confused yet? Yeah.

He was running a high fever again yesterday, so they took more blood for cultures and did a DFA swab, which put us on isolation/contact precautions until the results come back. That means we get to wear paper gowns and masks around the clock. (It's more for the protection of the other kids in the hospital than him, and it's a huge pain in the rear for us and all of the nurses and doctors.)

His white blood cell count was up yesterday, as was his CRP, so we thought surely he had something viral. But today the counts are down, and our NP thinks something else is going on instead. Another mystery for the little man. It's so incredibly frustrating!!

He pretty much alternates sleeping, coughing and crying, with no alert periods in between. Whatever is going on in that little body of his, it's knocked him down. We started him on antibiotics yesterday, but we had to hold them this morning because the levels were high when they checked them earlier. That's probably due to him not peeing - again. His output has dropped off, and he's swollen again. His creatinine is up again this morning too, so we'll have to be careful with the diuretics.

He's back on the high flow oxygen since we couldn't keep his sats up on the regular canula. If he continues in this direction, he'll end up back on the Vapotherm. It's not the end of the world, but certainly not what we want.

I'm not really sure what we're going to do at this point. I'm waiting for the doctors to come around on their rounds, and hoping they have something brilliant up their sleeves. Until then, we're rocking our poor baby around the clock, watching, waiting, hoping and praying. We really appreciate your continued prayers - he still desperately needs them!

Sunday, March 13, 2011

Day 133

It's a new day, but yesterday's problems continue. Trent and I are both growing increasingly frustrated, and our hearts ache for our little man.

We don't have any more answers than we did yesterday. Of course, that's as maddening as ever. He's still throwing up and retching, running fevers and feeling horrible. His retching has become constant, and sounds so horrible that even the nurses are near tears for him. My heart breaks so many times daily, watching him hurt and not being able to make it better. It's such a helpless feeling, and I hate it.

The blood cultures are negative so far. The official results won't be back until tonight (48 hours after collection), but it would have shown something already if a bacterial infection were present. We're doing another type of culture today to check for viral infections, which will also take two days to come back.

The doctors on this floor are stumped, and don't really know what to do for him now. We're going to try a couple of different medications to help with the nausea and retching while we wait for the GI doctor to come in tomorrow. We still don't have much of a game plan, but I really hope we can come up with one soon.

My girls are out of school for Spring Break this week and instead of spending their break with us, they're with their grandparents. Don't get me wrong, I'm sure they are having a blast with the grandparents who adore them and will spoil them rotten... I just wish they could be here with me. I wish a lot of things could be different, I guess. It's just one more thing that sucks about being here. It gets depressing, and very lonely at times. I do have part of my family here, but I miss those girls so much. (I figured that as long as I'm having a pity party today, I might as well throw that in there as well.)

I'm ready to take my baby home. I know I sound like a broken record, but it's past time for this kid to catch a break. He is so very strong, but enough is enough. He's already been denied so much, and it's past time for him to catch up with the world.

I want to see the plan in all this. I want to trust our doctors and nurses and all of the medical professionals who make the daily decisions about our lives. I want to believe that they will be able to find the answers and fix his problems. Giving that kind of trust is growing increasingly harder, and that makes it really hard to remain hopeful. If the doctors are stumped, who do we turn to next??

I am so proud of what Holden has endured, of what he continues to endure with a grace I could never possess. I pray that we will find the answers for him soon. He has been so brave for so long, and he deserves those answers. He has fought so hard for the life that he has, and I know he has a very special purpose in this life. I know that he can change the world. And I believe that someday he will. We just have to get him back out in it and give him the chance.

Saturday, March 12, 2011

Day 132- Part 2

I've already posted Holden's update for today, but we had a visitor this afternoon, and now I actually have something good to post. The fabulous Ms. Ren Morrison came by to bring us Holden's pictures from his one-year-old session back in February. Ren is a beautiful person, inside and out, and her light just shines. If you're looking for an amazing photograper to capture true moments- not just pictures- Ren is your girl. Click here to visit her blog. We love you Ren! :)

I had a little trouble picking out my favorites...

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.

Friday, March 11, 2011

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!

Thursday, March 10, 2011

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.

Wednesday, March 9, 2011

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. :)

Tuesday, March 8, 2011

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.

Monday, March 7, 2011

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.

Sunday, March 6, 2011

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.

Saturday, March 5, 2011

Day 125

Well, yesterday didn't go as well as I had hoped after I posted the last update. He had a pretty rough day and night, but I'm hoping greener pastures are ahead for today. He's been having a lot of trouble breathing- working too hard at it, breathing too quickly and not keeping his O2 sats up. He was really junky all day until the RT last night managed to get up massive amounts of blood and secretions while deep suctioning. I was horrified at the volume that came out of my poor little man, but we hope that will help him to breathe a little easier. I think part of the problem is pain as well... He doesn't take deep breaths when it hurts- who would?- and the shallow, rapid breaths don't help him out.

His pain level seems to be better today after being too high yesterday. He just seemed so sad and pathetic all day, and the spark that he's always had in his eyes was gone. He's gotten a little bit of that spark back this morning, so I hope that means he feels a tiny bit better. We've taken him off of one of his pain meds because it may link to kidney damage, but he still has his morphine if he needs it.

Our new issue is with his urine output, or lack of. He's really positive on his fluids, which we know in Holden's world is a very bad thing. He's pretty swollen, and the extra fluid just compounds his respiratory problems. We've tried upping his diuretics, but he hasn't responded like we wanted. We are upping them again today and hoping that he cooperates. If he doesn't pick up the pace today, they'll put a catheter in tonight or tomorrow. So once again, I'm going to ask you all to please pray for pee. :)

After his stellar first day post-op, I was really hoping that he would sail through this recovery and surprise us all. Unfortunately, it's going to take him a little while longer. I am keeping my faith that he will recover, be better than new, and forgive us for putting him through all of this again. I pray that he's too young to remember all of this in the future, and I hope he understands why it had to be done if he does remember. I truly hope he will forgive us for the many times we've had to hold his tiny body down and whisper, "It will be okay," when clearly nothing is okay. I just have to keep reminding myself that without going through this Holden will not live. It's just that black and white. He's a little young to grasp that concept though.

Today is going to be a better day, I have faith in that. Today we are thinking big, praying big, thanking big. The fact that he's made it this far is a true testament to the strength of his will, and to the many doctors, surgeons and nurses who have worked day and night to save him. So here's to gifted doctors, steady hands and living in a time when we are blessed with brilliant medicine. No matter how many setbacks we have, we are still incredibly blessed.

Thank you again- so much- for the continued prayers and encouragement. I have gotten so many sweet, uplifting messages from people we know and people we don't, and I appreciate every one of them. We live among such supportive, genuinely kind people whose positive attitudes and cheerleading spirits have given us a strength that is hard to explain. I couldn't be more grateful.

Friday, March 4, 2011

Day 124- Continued

My laptop is only working sporadically. It's having trouble pulling from the AC power source, and the batteries run out quickly. It's a small annoyance compared to everything else going on, but an annoyance nonetheless. I'm going to try and squeeze in an update while it's working...

Holden had a pretty decent night. It amazes me to see how resilient kids are. He knows he doesn't feel right, and he's still pretty uncomfortable, but the strength of his will is stronger than the pain. I went down to get something to eat last night and when I got back to the room, Trent had Holden sitting up in bed. He was happily watching his favorite movie- Finding Nemo- and didn't even seem to remember he had major abdominal surgery the day before. Amazing.

He did have to get a little extra morphine last night, but he hasn't had any since then. I would have been crying and begging for more drugs before the morphine even tried to wear off. To say this kid is a superhero doesn't do him justice.

My biggest concern is his lungs, as we kind of expected. His xrays don't look much different than yesterday morning (still a little hazy), but he's really junky-sounding. When they deep suction him- which is a universally hated experience- they're pulling up pink/red fluid where before it had been pretty clear. We're not sure if it's blood from the irritation of the suctioning or if it's a little bit of pulmonary edema, but we're going to be watching that closely. He's still on a pretty high flow of oxygen, which he pulls out of his nose over and over again. The high flow seems to really bother him, and we spent the night getting up every five minutes to replace the canula. He doesn't stay afloat long without help, unfortunately.

Other than that, he's doing so well. We'll stay down here in the CICU until we're sure that his respiratory issues don't develop into anything more serious, but we hope to be back on the floor this weekend.

Dr. Pearse, our cardiologist, came by to see him last night, and she asked that we say a few prayers for two of her other patients. Justin and Kaleb are both patients here at CMC, and they are having a really rough time this week. We have been humbled and awed by the many prayers lifting Holden up these past few days, and I would so appreciate an extra prayer for these sweet little boys and their parents.

I'll go ahead and post some pictures from our camera archives while I have the laptop to do it, but these will probably be the last ones I'll be able to post for a while... My laptop has to go back to the fix-it man, so I'll only be able to post updates until I get it back. (I'll also post the pictures from Ren as soon as I get the CD.)

As always, thank you so much for your unending prayers and support. They mean the world to us, and we are so very grateful.

Always working those jazz hands
Chewing on his leads... Yes, he knows better
Sucking on a chocolate cookie, but being careful not to swallow any
Getting ready for his one-year pictures
Such a handsome little wad of boy :)

He's getting spoiled in the rocking chair, and I am totally okay with that. (The hat is Dad's addition.)
I love how fat his face looks here!
His "mean" face. This is usually followed by a face grab.
A new kind of chuckle.
Jazz hands again.
Always smiling, no matter what. I love this kid.
Sitting at the window, soaking in some sun. This is as close as he gets to outside.

He misses the sun.

Right after his last surgery.
Freshly extubated.
His first really alert period, with no crying.
Sitting up watching his movie, less than 24 hours after surgery. Seriously, he amazes.

Day 124

My laptop is dying, so I won't be able to post a detailed update until later today. I just wanted to let everyone know he's still stable and holding his own. We're having some minor respiratory issues, but he's still off the vent. He's feeling a little better too... He's already sitting up! He's pretty much a rockstar. :) I'll update more this afternoon, but I didn't want anyone to worry.

Thursday, March 3, 2011

Day 123- Update

We successfully extubated him a little before noon. It looked a little sketchy in the beginning, but he seems to have settled down a little bit. His respiratory rate is still all over the place, but we're praying that evens out as the day progresses. He's still in a lot of pain, which could be part of the reason he's having trouble with his breathing. I probably won't start breathing myself until he makes it to through today without being reintubated. Once we pass the dreaded nine-hour mark (when he's had problems in the past), I may relax a little bit. Please say a little prayer for his healing and comfort... He's a tough little man, but he could use an extra lift today.

Day 123

Well, we're still hanging on in here. A huge thank you to my aunt Cheri, who has been updating the blog. It was such a relief to not have to worry about keeping everyone up to date, and we so appreciate it! Yesterday went pretty well overall. Trent's mom, stepdad and dad came up, along with my cousins. We had a great support system here for us, and we are so grateful-as always- for the blessings in our lives.

I spent the morning packing up the tons of junk we had stuffed in our little room. Our car is now FULL. (How do we manage to collect so much in here??) We had planned on bringing the essentials down to his room in the ICU, but they are out of beds down here so he was put in a room they call the fishbowl. We couldn't find space for our things in here, so all of that's in the car as well now. Our room is not so much a room as a storage closet, but we're just thankful that they found a place for him. Back to the point...

The surgeon was running a little behind, then the anesthesiologist was running behind. They didn't end up getting started until after 4pm. Once Holden was in the room though, everything went by quickly. His surgeon is one of the best out there, and we were confident in his abilities. He came out to tell us that the surgery went really well. They were able to successfully correct the malrotation, take his appendix out and place the gtube with no issues. (On a side note, he did find a Ladd's band, which is a band of tissue that connects the intestines to the intestinal wall, creating an obstruction in the duodenum. We never saw the band in any of the tests or scans, so it's fortunate that we did the surgery now becasue the band can cause vomiting and other issues. We're not sure if that was contributing to his being sick all the time, but it certainly wasn't helping either. Between that being fixed and the gtube being placed, I pray his vomiting is a thing of the past.)

After his surgery, we were able to come in and see him. Even though we were prepared for what he'd look like, it was still so hard to see him with all of the lines and tubes coming out of him. The smell almost knocked me over, it brought back so many memories. There's a specific smell associated with kids who are intubated, like a combination of the tape and tubes and plastic... I didn't realize before how much I had associated with that smell. Anyway, he was as comfortable as possible under the circumstances, and we had nowhere to sleep in the fishbowl room, so Trent and I spent the night with my cousins Jack and Jennifer. (Not only do they live close to the hospital, they were willing to give up their own sleep so they could feed us and give us a home for the night. We are so grateful!) We left Holden here in the capable hands of Dave, our favorite night nurse, who called us with updates. He had to give Holden quite a few extra doses of pain meds overnight just to keep him comfortable, but otherwise he had a decent and stable night.

He seems to be pretty uncomfortable and in a lot of pain this morning. They've cut off his Fentanyl in preparation for extubation, and that didn't help much. His chest xray looked a little hazy this morning- not horrible, but not what I wanted to see either. They've upped his diuretics a little bit, and I'm praying hard that we don't have any issues there. Hopefully he'll be a little more comfortable when we get the breathing tube out, but we're still looking at a rough couple of days for the little man.

We are so touched and immeasurably grateful for the many, many prayers. We would appreciate your continued prayers over the next few days for Holden's comfort, healing and peace. He's not out of the woods yet, and he won't be until we get him successfully extubated. The next 24 hours are still going to be touch and go, but he's a tough little man. This kid is a superhero, and I couldn't be more proud of him. He's got this. :)

Wednesday, March 2, 2011

Update (cont.)

Just in from Lindsey: "Not much new, he's still out and on the vent.  His vent settings are already pretty low though, so that's a good sign.  Just praying for a good night and day tomorrow."   9:17 p.m.

We're all praying with you and for you all.

Update (cont.)

"Surgeon just came in. Surgery went well and they're closing him up now.  He's not out of the woods yet, because we won't extubate until tomorrow.  We could face some problems there, but praying we won't!  So thankful that it all went as planned!"  6:06 p.m.

Update on Holden's Surgery

Lindsey asked if I would update her blog for her concerning Holden's surgery.  They had Holden in pre-op for an hour.  Lindsey wrote, "He finally fell asleep, thank God!"  I gather our little guy wasn't feeling too well for the most part of the day.  He didn't get taken in for his surgery until 4:13 this afternoon.  Please keep the prayer's going.  We will update as we're able. 

Day 122

Holden is scheduled to go into surgery in about half an hour. I've been told that some people are unclear on what he's going in for today. He's having a Ladds procedure, to correct his intestinal malrotation, and having a gtube placed at the same time. The Ladds involves taking his intestines out and recoiling them in the correct position, since he was born with those backwards as well. (That's probably the most non-medical explanation of the procedure ever.) That's the basics... He'll also have his appendix removed, which is normal with this procedure. They'll be placing a gtube in his stomach as well, which will allow us to get rid of the ng tube he currently has so many problems with. It's a big bad deal, all of it, but it should improve his quality of life so much. Not to mention the fact that correcting the malrotation will save him from major, potentially life-threatening issues later. So this surgery is a good thing. I'll keep repeating that to myself today.

I'll try to update this blog as often as I'm able to today... I know everyone wants to know what's going on, and I'll do my best to keep you in the loop. We are honored and truly thankful for all of the prayers and good thoughts coming his way. We love and appreciate you all.

Tuesday, March 1, 2011

Day 121- Part Two

Nothing like being kept on our toes! Holden's surgeon called a little while ago and said he wants to do the surgery tomorrow. The attending doctor is arranging a bed in the ICU, getting all of the doctors on the same page and pinning down a time. We will hopefully have more information later this evening. (Updated to add: Holden won't be the first case in the morning, so our tentative time frame is around noon to early afternoon. We will keep you all posted as best as can.)

I have to keep reminding myself how much I wanted this to happen. I cried. I threw temper tantrums. I practically begged for this surgery. And now that it's here I am terrified.

Now all I need to do is find the courage to hand my baby over again. Hand him over to another stranger and pray that God sees fit to guide the surgeon's hands, to bring my baby back to us once again.

Our surgeon is the best there is, we've been told by countless people. He is completely qualified and highly recommended, but still a stranger- One who I'm trusting with my little man's life. Will that part ever get easier? I don't think so.

So please say a big prayer for our little man tonight. The surgeons will be expert, and he will be brave... But I'd appreciate your strength in his corner just the same.

Day 121

We've had quite the busy week already, and we still don't have much to report. Trent and I had errands to run and things to do around the house, so my sweet mother-in-law came up to stay with Holden yet again while we briefly escaped to our real home. I don't know what we would do without her, but I do know I would have lost my mind by now without her help! I say over and over again that we are blessed- and we truly are.

Holden is still chugging along, holding steady in his own version of normal. He's still vomiting, but otherwise he seems to be in pretty good spirits. He keeps busy with his usual gamut of therapies- Physical, massage, speech, occupational... He's very popular these days. His daily appointments are like a full time job.

We are still waiting for a surgery date to be set, and even though I am dreading this surgery more with each passing minute, I am so ready to get it over with. Holden is too... I can tell. I may be pinning too much hope on the surgery as a "fix", but right now I can only see it as our ticket out of here. Poor Holden has to pay for that ticket yet again, but he somehow pulls rabbit after rabbit out of his hat and grows stronger every day. His strength far surpasses mine. Thank God for that.

It's time for him to take that grace and strength elsewhere. It's time for a new view. It's time for him to be a one-year-old boy, rolling around in the dirt and playing with his dog and driving me crazy as I try to keep up with him. It's time for all of that and so much more. It's just time.

I'm beyond ready to reintroduce him to the outside world. He's the king of his little kingdom in here, but I want the world to be his kingdom- as it should be. He has one heck of a story to tell, and I can't wait for him to get out there and start sharing his tale. He may not speak yet, but his scars can tell the story for him. As much as I wish his skin was smooth and untouched like other babies, I love those scars. I am so proud of those scars- of him. So proud.

Funny how a kid with a broken heart can prove to have more heart than all of us. And trust me, the boy has heart. 

That is God's mercy at its finest.