Sunday already

Can't believe it's Sunday. Where do the days go?

Caelen had another good night. Fighting sedation again, so it's been switched around a bit. He did mouth to me today that he wants to go :(
Luckily, the morphine, dex and versed that he is on help him settle back down again quickly and he doesn't remember waking up.

His viral cultures are negative, yay! But his UTI is still present, so he is going to stay on the antibiotics. Also, his X-ray looks better today and his lungs are starting to dry out. Dr Spray came by this morning and wants to take Caelen to the OR tomorrow afternoon to take him off ECMO, pending continued progress. So God's angels need to keep drying out his lungs with their wings.

I think that's it for today. He's still sleeping and waking appropriately when needed. We are trying to keep it quiet for the most part and let him rest. Too much stimulation in the room wakes him and then we get into the mess of adding more sedation. So imagine how hard my dad is working to keep his voice down and even just not talk ;)

Thanks again for the prayers, love from all of us!

Good night, wet lungs

Caelen had another good night, however he has been waking a lot this morning and even sat up and tried to pull out his chest tubes. This is obviously very bad. However, from a neuro standpoint, this is positive. The attending didn't seem to share my excitement. Clearly he is under sedated so the plan today is to go up on sedation so he can rest and stop fighting.

Also, the diuretics have switched from scheduled doses to a constant drip. The team is also going to decrease his maintenance fluids and increase the diuretics to get more fluid off his lungs. His X-ray wasn't as improved as we'd hoped, so the plan this weekend is to just work on his lungs and diurese him as safely as we can without dehydrating him intervascularly.

If you are looking for specifics to pray for, please pray for his lungs to dry out, open back up and heal. I'm stealing this from one of my good heart friends Lori, "we need the tiniest angels with the biggest wings to get into his lungs and dry them out."

Lastly, we are going onto contact isolation (glove, gown, mask) because a respiratory sample was sent to the lab. Caelen's bacterial cultures are clean, except for a urinary tract infection, and he's getting antibiotics for that. But the viral culture wasn't done until today and won't be back for 24-48 hours, so this is why we have to be on contact isolation until the results are in. We are hoping that it comes back clean. But in the meantime, visitors are severely limited.

Thanks for your continued support and prayers for Caelen.

I guess the mob is getting antsy for an update ;)
Caelen had a good and non eventful night. Since it is the start of the weekend, the team is going to keep him on ECMO for now and give the lungs time to heal. Never good to try big changes on weekends. But Caelen did pass his bedside neuro exam this morning and their is no emergent need to get the bedside CT scan. He will still need it to check for signs of seizure, stroke and bleeding, but right now signs point to no major damage from the "event". Caelen wakes to our voices and can move all extremities, he even mouthed "more water" this morning, which made me burst into tears. I am very encouraged by his progress. He is still critical, and we have a journey, but he is stable. Thank you for the hundreds of messages in the last few days. They have been getting us trough this scary time. Please keep praying for Caelen

Back from OR and cath lab

Caelen did great in both the OR and the cath lab. Dr Spray moved the ECMO cannula from his neck to his chest without incident, and even closed his chest too, which is unusual, but cool, because I really don't want to look at his open chest. The reason he didn't do it in the chest first is because when he came in at 4 am, Caelen desperately needed oxygen and the neck was the fastest and "easiest" way to do that, thus stabilizing him and readying him for the OR and cath.

He also checked out the Fontan and said there are no issues that he could visually see. So off Caelen went to the cath lab where they found nothing to correct. His Fontan circulation and fenestration are working perfect, but he does have too much flow going across the fenestration, mixing in too much blue blood and causing lower sats. The reason he has too much flow across the fenestration is because of the high pressures in his lungs.

So what this means is that the lungs got overloaded with fluid and he crashed because of fluid, but not because of physiology. Boo that there wasn't anything to "fix", but good because his physiology is fine. So right now he is stable, and the goal is to keep him on ECMO for the next 24-48 hrs, diurese him to get the fluid off his lungs and just allow his lungs to heal.

Thank you, thank you, thank you for all of the amazing prayers today. What a difference a day makes. Please keep praying for Caelen's lungs to heal.

ECMO

Caelen has had a very bad night. He desaturated very quickly last night and was re intubated and placed on ECMO, which is a heart and lung bypass machine. It is doing all the work for Caelen's lungs and heart. The Dr believes that Caelen has a pulmonary artery that has popped off from the fontan pressure and is leaking blood. So his lungs aren't getting enough oxygen. His lungs are wet and absorbing all of the fluids being pushed to combat the dehydration. This is bad. This is also why they are collapsing.

He is currently stable, but still very, very sick. The goal today is to get him into the cath lab and find out what is happening. He has no non-invasive access left, so the team has to look at accessing him through alternative surgical methods.

Please keep paying. Last night was very scary and we came very close to losing him. But he is a fighter and I believe in God and the power of prayer.

Thank you.

Post op day 1

Caelen had a rough night, and a roller coaster day so far, but he's ok. The nurse and medical team keep telling us that it is to be expected, and they aren't worried. It's hard to watch him so miserable, but again, it is to be expected. Still, I don't like it. They don't want to keep sedating him if they don't have to. That being said, they have had to sedate him a few times today when he has woken and gotten very agitated. He tries to pull of the oxygen and tries to pull at his lines.

But, he has also woken today at times and been good. He is talking a little when he wakes, either saying that he wants water, or he's watching Monsters. He also says that he's done and he wants to go. So, appropriate neural responses for a toddler post op. We have let him drink from his sippy cup a few times, but he tries to guzzle the 2 ounces he's allowed over an hour. So it's best to try and keep him asleep.

It's still a balancing act and our nurse is getting her workout. Please keep Caelen in your prayers. Specifically that his heart rate, blood pressure, respiratory rate and oxygen sats return to normal.

Thank you

CICU

Caelen did great in surgery and Dr Spray said he didn't encounter anything unusual, so the Fontan was as expected and uneventful. Yay!

He came back to CICU around 3:00, but we didn't get in to see him until about 5:30 because he has a pneumothorax (air in his chest cavity). So they were taking X-rays and making sure he was safe to extubate, which he did. Just to give him support until the air drains from his chest cavity (the air is pushing against the right lung and keeping it from fully inflating), he has an oxygen mask on and being fed 100% pure oxygen.

His sats were a little rocky in the beginning, but they are steadily improving. His o2 is in the upper 80's and low 90's which is awesome. We've never seen numbers this high. Now granted, he is still getting oxygen support, but they have been steadily increasing from the mid to upper 70's when we came in. His chest tube drainage is on par and slowing a bit, as well as thinning. All good things. His blood pressure is bouncing a little bit too, but the nurses are staying on top of it.

So all in all, Caelen is doing as expected. The next 48 hours can be bumpy as the medical team adjusts meds and treatment and he wakes up. The goal is to keep him calm and hopefully asleep right now so he doesn't pull at his lines anymore.

We are hoping for a calm and mostly peaceful night for Caelen so he can rest. Thank you to all for so, so very many wonderful messages today. We truly appreciate all of the support and prayers for our miracle boy.

Love,
Katye, Martin and Caelen

Coming off bypass

So far so good. The nurse just told us that he is warming up back to core temperature and getting ready to come off bypass. The hard part is over.

He will stay in the OR about another hour so the team can keep an eye on him and make sure he is adjusting to his new repair, and ensure that everything is normal. Once he comes back from the OR and we meet with the surgeon, we'll update again.

In surgery

The nurse told us that they only started the actual surgery about 30 min ago. It took awhile to get access. Next update in an hour or so.

Anesthesia prep

Caelen is back in the OR being prepped by the anesthesia team. We are upstairs waiting to meet with Dr Spray, and then he will go down to the OR and start. Once he starts, it should be about 4 hours. Could be less, but the nurse advised 4 hours is a good ballpark. Once we know more, we'll update.

Thank you for your prayers.

Surgery Date

Just go the date, it will be September 25 with pre-op on the 24.

Also, we saw our local cardiologist today and she confirmed the timing of surgery, saying now that he is primed and optimized, there is no benefit in waiting. She did an echo and his heart function is good, especially considering that he is still a stage 2 repair. Normally the Fontan is scheduled between 18-24 months of age. So at 3 yrs, we are fortunate that his heart is holding out.

Well, time to start making serious arrangements. Thank you all again for your love and support. Please continue to keep Caelen in your prayers.

Love,

Katye

Still no date

We learned today that when the cath Dr and our cardiologist told us last week that surgery would be in 2-4 weeks, they didn't realize that our surgeon, Dr Tom Spray was booked until thanksgiving. So now the scheduler has to get together with Dr Spray and his team to figure out how to squeeze us in. It's made even more frustrating because it feels a little like we rushed to get the cath, were told 2-4 weeks, and now Caelen really needs the surgery because of the collaterals. So waiting around is a poor option because:

1. Caelen is now working harder to breathe and can't run around.
2. He is in isolation mode again to prevent germs. So we're bored.
3. He can't go to school and risk germs and infections.

So hang in there with me and as soon as we have confirmation, I'll post an update.

Love,

Katye

No surgery date yet

Sorry to not post, I was hoping to wait on a surgery date to update everyone but I think I've worried a few of you, lol.

Should be tomorrow, I emailed and called today only to find out that I need to wait until tomorrow.

On a side note, we got a better understanding of Caelen's desaturation. I reached out to the local cardiologist that has been seeing us since pregnancy, and she explained that Caelen was clearly relying on those collaterals that were plugged and coiled for an extra boost. So now that he doesn't have them, he isn't getting as much oxygenated blood to his lungs as before, hence the cyanosis. So this is our new normal until the Fontan. She also explained that collaterals and the Fontan don't get along. So they needed to go, and we need to have the surgery soon. Now if only CHOP would just give me a date.

Lastly, thank you all again for your prayers and support. I'm so appreciative for all of the loving emails and messages that I've received over the last few days. Sorry that I seemed down, I guess I needed to put all of my fears out there so I could let them go.

I am much more hopeful going into this surgery than the last, and Caelen is so much stronger. He's also got a few more angels in Heaven this go round watching out for him, including both my grandmothers now. So I know that with the new additions up there, we are in good shape.

Again, thank you all and hopefully I'll have a date for everyone tomorrow.

Love,
Katye

This moment for life

I'm clearly not a Nikki Minaj fan, at all, but I do like her song title and hook. Kinda poignant, this moment for life.

I know whats coming. Caelen isn't doing as well after the cath as he was before the cath. He is tiring faster, which is weird because he is supposed to be stronger. He is having more cyanotic episodes where he turns blue and Martin and I need to keep him calm. Caelen recovers quickly, but this is different from pre-cath.

His cardiologist isn't concerned, but I am. Some nagging suspicion that all isn't well. He said that we should get the call Tuesday regarding our surgery date, which should be in the next 1-3 weeks.

How do you prepare yourself for what is about to come? I don't have an overwhelming feeling of dread, which is good. But I'm not naive either. I pray that the fontan, and all that goes with it is a success. I pray that Caelen does not have pleural effusions and chest drainage problems.

I pray that Caelen has an easy and straightforward surgery and the easiest of recoveries.

Overall, I pray that Caelen gets a break. I know that it's a lot to ask for, but these are my prayers:

Successful surgery
No complications
Fast and full recovery

That's my life in a nutshell. I want my son to live. I want him to finally catch a break and to get a chance at a normal life. So if you are wondering what to pray for, this is it.

Thank you to all of those who keep praying for us, please don't stop. Your prayers are miracles and got us to where we are.