Day 45

This has been another somewhat calm day, thankfully... Holden's lungs and breathing abilities are recovering far more quickly than we thought they would. He must want that tube out more than we do! They've been able to wean his vent down to extubation settings, and his xrays are looking much better. Apparently, the edema is going away as quickly as it appeared, thank God! We're hoping to try and extubate him in the morning, as long as he continues to do well with the trials overnight.

On the other end... His lipase count took another jump this morning, back into the 900's. He hasn't been fed, and his meds are all cleared, so they think the jump might be a reaction to Monday's trauma. They did another ultrasound just to be safe, and it still shows no major pancreas issues. Hopefully we'll start seeing the numbers fall again tomorrow. Again, this pancreatitis business just sucks!

He had to get another IV put in today, and this evening he'll have to get a new ART line. Neither is really a big deal, but I just feel so badly for him, since they're cutting his sedation in anticipation of taking the breathing tube out. He's definitely had better days.

And to end this post completely off topic... I've been trying to think of something nice we can do for the nurses and doctors over the holidays. We've had such great people in here, day and night, and we'd like to come up with something to show them how much we appreciate them. I would usually go straight to the dessert recipes, since that's the way to my heart, but it's not like I can go home and whip something up in the kitchen. I know many of my friends who read this are (or have been) nurses and doctors... Any suggestions? 

Day 44

Today is a better day, and I am thankful for that. It's been somewhat calm in here, and I'm thankful for that as well. His lipase count is still in the 500's, which is kind of frustrating, but we're still waiting out the pancreatitis. Last night, we had a lot of trouble getting Holden sedated on the oscillator. We hit him with enough drugs to kill a few grown men, and my baby boy still wasn't knocked out. As Josh- one of the doctors- said, "Whooeee, he is impressive!" He's already a drug addict at the age of 10 months... What every mommy dreams of. After a couple of hours of giving him more and more medication for sedation and holding him down (it took at least two of us at all times to keep him pinned down), we decided to try bagging him for a few minutes to see if he would be compliant with the conventional vent. We figured it would be easier to keep him sedated and calm if he was on the more comfortable vent, and it worked. We've been able to wean down the settings a lot too, which is a good thing. That means he won't have to be on the vent as long this time, if all continues to go well. His xray this morning was still pretty hazy and wet, so he'll be on the vent at least another couple of days. The doctors still aren't 100% positive about what caused the flash edema to begin with, but we're fairly certain it was a reaction to the ketamine they used to sedate him for his surgery. I'm really hoping we're correct in that, because that would mean it's not his heart. Either way, things aren't as bleak here today, and we're trying to focus on getting our baby boy back again... I'm beyond ready to get him out of here!!

Day 43- A really bad day

This is such a sad place, almost unbearably depressing at times. Miracles happen every day here, I know that... Every day Holden wakes up is a miracle. There are babies on this floor who are even worse off than Holden, and the fact that they're even alive is a miracle. So this place is full of enormous blessings, but such sad lows too.


The past 24 hours have been mostly lows... Holden had his PD cath taken out this morning. They did the surgery bedside, with no vent. He came through with no complications, but crashed pretty quickly afterward. He was working so hard to breathe, and it wasn't working for him. His O2 sats dropped and his resp rate went up. Xrays showed fluid building up in his lungs, and it was the same pink frothy stuff as last time. He had flash pulmonary edema, where blood flow gets backed up into the lungs. They tried him on CPAP to see if that worked (CPAP is the next step to get pressure into the lungs, before turning to re-intubation), but it wasn't enough. They re-intubated him, but couldn't get him stabilized on the conventional vent either... They had to put him back on the oscillating vent. He's stable now, but this has set us back to square one. This is where we were in the beginning of November. I hate even typing that. They've done an echo already to see what's going on in his heart, but we don't know the results yet. Nobody knows what caused this to happen, although there are theories... Hopefully we'll find out soon. I really don't want them to tell us that this is all coming from the pressures in his heart again... That kills our hope of taking him home to wait for a transplant.


I wish the lows stopped there, but they don't. Sweet Taylor received his wings last night, and his heart is whole again. Please pray for his family as they grieve the precious baby they've loved and cared for the past nine months. I don't know what to say to them... What can I possibly say? What can anyone say? There's a sense of guilt you carry around when your child lives and another doesn't. And just to make situations like this more difficult, you know that at any time, it could be you... "There but for the grace of God go I."


Many prayers are needed in this unit tonight... I hope to have a less depressing update tomorrow...

Day 42

Taylor made it through the night, but barely... Again, please keep his family lifted in your prayers. I can't imagine what they're going through right now, as I've never lost a child, but I know what it's like to sit next to your baby in the ICU, praying and negotiating with God. My heart breaks for them.

Today has been another one of those painfully slow days... Nothing much has changed, for better or worse, but we haven't made any progress either. Holden's lipase numbers are still the same today, although he doesn't seem to be in as much pain as yesterday. He's really restless though... Sleepy, but unable to settle in and go to sleep. It seems to be due more to agitation than pain, and hopefully we're right about that... I don't want him in any more pain, poor baby.

His lungs are still about the same as well. The chest xray didn't show much change, but we've had to increase his oxygen little by little. He doesn't have an infection or anything obvious happening, so we're not really sure what's going on.

He's throwing up less today than yesterday, but still throwing up. This pancreatitis business stinks. It's painful just watching him, and I can't imagine how he feels. This is one of the most frustrating things we've dealt with in here, mostly because we don't know what caused it and there's no treatment for it. We just have to wait for it to run its course, which really stinks for Holden!

In good news though, I got to hold him for a little while today. We haven't been holding him as much as we'd like to because he's been in so much pain... As much as I want to hold him and love it all away, being out of bed hurts him more. He did pretty well in my arms, but it didn't last long enough... Now he's sleeping more comfortably in his bed again.

They decided again to postpone the surgery, for two reasons. He still isn't in the best place to be put back on the vent or sent to the OR, and there will be more people around if we do it during the week. They're talking about putting him on the schedule tomorrow if everything looks okay... I'll keep you all posted.

And some of you have been asking about where to send cards and letters... My mother-in-law graciously agreed to let us use her as a temporary post office, so you can send mail to us through her.

Trent and Lindsey Sisk

c/o Susan Brown

5616 Maple Valley Dr.

Azle, TX 76020

I haven't posted any pictures in the past few days, mainly because most of them look the same with Holden laying in his bed... I thought this one was sweet, with him hugging his lovey...

 And here's Trent, snuggling with the remote (his lovey)...

 I look way more excited than he does. (And can you see how great his scar looks?? I am amazed!)

Day 41

Before I get to Holden's update, I have a continuing prayer request... One of Holden's heart friends here in the CICU needs prayers. His name is Taylor, and he's 9 months old. He's lived at this hospital his whole life, and been through two open heart surgeries, among numerous other things. His parents were told this week that he won't be able to get the third surgery in his series, and he isn't a candidate for a transplant. They're hoping to extubate him today so they can take him home to join the angels in peace... If he can't be extubated successfully, they're going to let him go home to God. Please keep this sweet baby boy and his parents in your prayers today... Pray for their strength and peace during this horrible time.

Our problems feel small compared to what this other family is going through, but we have them nonetheless. Holden's had a pretty rough morning, comfort-wise. He seems to be in a lot of pain... Usually we can comfort him, but he's been inconsolable all morning. He's had all of his regular meds, and we're going to see if an extra dose of morphine helps him out... It's unimaginably hard to see your baby in pain and not be able to do anything about it. I want to pick him up, kiss him and make it better, promise him that everything is going to be okay. I can't do that, and it's hard.

His lipase numbers are still the same, not up or down from yesterday. His chest x-ray looks a little worse this morning, more hazy and wet. He sounds a little more crackly, and he's having some issues keeping his oxygen levels up... Nothing major yet, but still things that worry us.

One of the anesthesiologists came by last night and told us that Holden's on the surgery schedule for this morning. He's the second case, so he should go in around 10am. We didn't get the pair that we were hoping for, so he'll be re-intubated today. Again, the surgery itself isn't a big deal, and usually re-intubating wouldn't be a big deal either. With Holden, things are different... We worked for weeks to get that tube out of his mouth, and I'm terrified of putting it back in. There is a risk that it will set back any progress he's already made... I hope and pray that doesn't happen. I'm ready for these doctors to fix him and send him home with me... I just want my little boy back.

(Updated to add: They've decided to hold off on his surgery for at least another day, since he's having so many problems this morning. We don't want to take any unnecessary risks by sending him to the OR with other issues.)

Day 40

We've been covered in vomit and poo for the past 24 hours... Y'all should come join us, it's good times around here! Poor baby is still throwing up, even after changing his NG tube to go into his stomach instead of his intestines. They're switching some of his meds back to IV to see if that helps, just in case it's the meds making him throw up and not the pancreatitis. Unfortunately, that hasn't seemed to help much. He's also been blowing up his diapers, and I can't figure out where it's coming from... He hasn't eaten in days, so how is he producing that much?? Another one of his little mysteries, I guess.

His lungs are a little more wet today, especially the right one. That's not a problem yet, but we'll need to keep an eye on him and maybe adjust his diuretics so that it doesn't become an issue. He's still pretty weak, and doesn't have the ability to cough the stuff out like normal babies would.

The surgeon came in last night and told us they're taking the pd cath (belly drain) out. He wanted to do the surgery last night, but nobody else thought that was a great idea. The surgery itself isn't that big of a deal, but he'll have to be put under general anesthesia, which means they'll probably have to re-intubate him. I really don't want that to happen, since we had so much trouble getting him off the vent before. If we can get him scheduled with one specific surgeon/anesthesiologist pair, they'll consider doing the surgery without putting him back on the vent. I'm praying we get that pair!!

(Edited to add: Our friend Amber came by today to pray for Holden and bring some gifts, including his first Bible. She took the time to go through and mark healing verses... Among my favorites: He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40: 29-31... Holden's going to fly one day. :) Thank you Amber!)

Day 39

Holden's labs came back this morning with a lipase count in the 900's... Still elevated, but MUCH better than the 2000's we saw yesterday. He's throwing up more today though, which makes him feel worse, even if the numbers show improvement. All babies are pathetic when they're sick, and he's no exception... I wish I could wave my magic wand and make all the pain go away!

The GI dr. came by this morning, and didn't have much new information to add. I guess I was kind of hoping he'd look at him and have something brilliant in his back pocket, but like the old saying goes... "If wishes and buts were candies and nuts, we'd all have a Merry Christmas." (I don't even know if that makes sense, but I didn't coin the term.) Evidently, we're already doing everything we can for him, which sucks, because it's not enough.

We are going to pull his feeding tube today, and replace it with a new one. All of his oral meds go through the tube straight to his intestines... Every time we give him anything through the tube, he throws up, so we'll try something new and see if he tolerates it any better. They're going to put the new tube into his stomach instead of his intestines, and we'll see how he likes that. It can't hurt anything, since he's already puking. We'll have to push it back down into the intestines once we start trying to feed him again, but that won't be for a couple of days anyway.

He also had another echo done around lunchtime. Nobody had said anything about doing another one this soon, so I was of course freaking out a little bit, thinking they were worried about something and just not telling us... Evidently, they just want to take another look at his heart to see how his function is now compared to the last echo right after extubation. His heart seems to be dilating and relaxing more, which is a great thing that nobody saw coming. Maybe they'll come in this afternoon and tell us he's going to be fine without a transplant? I can always dream. :)