Subtle Changes, Big Difference

Likes to relax with his hand behind his head.

"Northern Lights" from Reaganne

Cute pins from Reaganne!

Wubbanub from Kelsey! (Waiting to take it out of the package until Cael is extubated)

Feelin' good from the Morphine and Versad. lol

No chest tube! :)

Wide awake after getting his chest tube removed. 6.9.12

Holding Mommy's finger after an episode of agitation. 6.9.12

Since Friday morning the doctors have made a few adjustments which have helped Caelin to be more comfortable and have enabled him to be well-rested. 

Friday they took out his Foley catheter so it is back to diaper changes. They also started feeding him formula through his J tube at a whopping rate of 2 mL/hr! Woo hoo! Saturday they increased his rate to 4mL/hr and restarted his GI meds- Zantac, Prevacid & Reglan. He tolerated that rate, so today they increased him to 6mL/hr. He has not pooped yet but he has been gassy so hopefully he will poop soon. He has had a lot of sedation this past week so his motility has most likely slowed down and it may take a little longer to get things moving.  

Saturday a PA, Katie, took out his chest tube. They gave him some extra Morphine and Versad for this and although he was awake the whole time, he seemed pretty comfortable and was cooperative. He was awake for a couple hours afterward, too- we know he felt relief as soon as it came out. They also changed his pain meds to Valium and Methadone to start weaning him off the Versad and Morphine but he is still allowed to get PRNs of Versad and Morphine if he needs them. Hopefully the Morphine drip will be turned off tomorrow.

His blood pressures have been lower but they increased his NiPRIDE to 4.5 MCG/Kg/Min (the highest is 5). This drug is not meant to be used long-term so Dr. Miller, the cardiologist, plans to transition him from NiPRIDE back to Enalipril. He is also still on Milrinone tat 1 MCG/Kg/Min to help his heart squeeze better. He is scheduled to get another echocardiogram tomorrow and hopefully the function will look the same, if not slightly better. *Prayers*

Since Cael came out of surgery intubated, he has had some major agitation events. Like we wrote earlier this week, he turns the color of a blueberry. But the past two days he has turned more the color of a blackberry- it is terrifying to see him this way! When he does this, several nurses offer their help to get extra Morphine, Fentanyl, and/or Versad because these medications are the only things that can get him to calm down... he cannot self-correct & our attempts at consoling him have no affect. This morning the chest X-ray revealed the breathing tube was malpositioned. This irritated Mommy because since his first freak out in the beginning of the week, Mommy asked several times if the tube was positioned correctly. Her and Daddy thought it could have been in a bad place because the past two times Caelin was intubated, he never got uncontrollably upset, had purple spells, and was unable to self-correct. This time around, whenever he was repositioned, got CPT, was suctioned, or startled he would freak out, not be able to breathe, and turn purple. With the X-ray as evidence, the respiratory therapist pulled the tube back a little so it wasn't so deep and repositioned it. Cael has been a pretty happy guy ever since she did this- he has slept for hours and only had one event when suctioned. This event was pretty bad and did require Fentanyl and Versad to help him recover and go back to sleep. His upper left lobe did look better on his X-ray this morning so hopefully he will get extubated tomorrow, if not Tuesday. We hate the vent because we know how much he hates it, so the sooner he can come off, the better. 

Cael's day nurse this weekend has been Reaganne and she is wonderful! We first met her a few weeks ago; she was the first nurse to help prepare us for going home (ideas about supplies we will need and such). Saturday she brought Cael two little pins that reminded her of him. One says "Tough" and has a picture of a cookie. The other says, "Wiggle" and has a picture of a worm. Super cute! She also brought us some of her fresh homemade corn salsa to try along with some tortilla chips and it was scrumptious! Then this morning she brought a present for Mommy! Reaganne's mom makes gorgeous hand-crafted custom jewelry and Mommy had admired her work on Pinterest. So after our conversations and doing a little research on Mommy, she asked her mom to make a wrap bracelet specially for Mommy. The bracelet's name is "Northern Lights" and it is perfect! Mommy absolutely loves it and cannot wait to show it off everywhere she goes! If you would like to check out more of her work you can check out her Facebook page: C-Shaw Designs

The nurses and techs here are just absolutely amazing. Not only do they take wonderful care of our son and keep Mommy and Daddy company, they are patient and offer advice, support, love, and more.  Nurses text each other asking about Cael when they are not working. A nurse, Devra, made a donation during the Telethon in Cael's name. Misty, a tech, gave Mommy resources to use while on her milk and soy-free diet, brought her soy/milk-free chocolate chip cookies, and taught her how to crochet (still a work in progress). These are only a few of the magnificent gestures from the staff at All Children's. Their gratuitous thoughts, prayers, and actions extend past their 12 hour shift and for that we are astounded, thankful, and so blessed. They truly are like family to us and we cannot imagine Cael being treated at any other hospital.

Recovery: 3rd Surgery 2nd & 3rd Day

6.6.12

Wide awake! 6.7.12

And sleepy. 6.7.12

Well our little warrior is making teeny tiny bits of progress each day. Overall, his numbers look great. His oxygen saturation, heart rate, and arterial blood gas numbers look great but his pressures are still high and his function is still moderately to severely depressed.  


They plan to take out his Foley catheter tomorrow and his chest tube on Saturday. They want to leave his Foley in because of the diuretics he is on and because his Central and Arterial lines are in his groin. He was getting Lasix every six hours yesterday to help his swelling come down and pull out extra fluid. This made him put out almost 400 mL more than what he received, so it did what they hoped. So he is now back to getting it every eight hours because they do not want to dehydrate him too much. Despite two Pas, two nurses, and Dr. Wilmot manipulating his chest tube, it has put out next to nothing since 7:00PM Monday. Even though it really isn't draining any fluid, the doctors want to leave it in until they begin feeds. They have decided to do this to test if he has Chylothorax (leakage of lymphatic fluid of small intestine). If he does, then a milky substance will leak into his chest tube. This is a possibility because the area that the surgeon repaired is close to the small intestine and sometimes (not often) it gets nicked but we are hoping this is not the case because it could lead to more problems down the road. With that said, they intend to start feeds tomorrow. They are going to start on a slow continuous rate through his J-tube. Hopefully he is able to tolerate it. So he is still on TPN but at a rate of 12 mL/hr (instead of 10) and Lipids at 1.5 mL/hr.


He is slowly being weaned off the ventilator and as long as his heart can tolerate it and his lung gets better, he should be off it by Sunday... we'll see. His left upper lobe is partially collapsed and the doctors think it is because he has a mucus plug. Since it has not gotten better the last two days, he will be getting a medication, Pulmozyme, to break down secretions and allow air to flow better. But this morning the tape from his breathing tube was cutting into his mouth, causing it to bleed, so the respiratory therapist changed the position of the tube over to the right side. With this, Cael got upset and had some good coughs. Jennifer suctioned him and a huge, think, blood-tinged wad of mucus came up through the tube! It was disgusting. But hopefully that is what needed to come out to help his lungs. He will get another chest X-ray tomorrow so we'll see if it looks any better. But his rate is down to 16 breaths per minute and he is doing a good job of breathing over the vent. His oxygen level is at 26%, so really close to room air (21%). 


His EPInephrine (adrenaline) was turned off this morning at 9:53AM and he has tolerated it. He got an echocardiogram at 2:00PM and Dr. Wilmot said his function looked about the same; however, he viewed this as an improvement because Caelin's heart no longer has the assistance of EPI and his Nitroprusside (NiPRIDE- blood pressure medication) is lower than it was on Tuesday during his last echo. So it is a good sign that his function has not gotten worse with these adjustments. Although Cael is doing pretty well, Dr. Wilmot might increase his NiPRIDE again because his pressures are still high (systolics in the 80s and 90s) and he wants them in the 70s.


His Morphine drip went from 0.2 to 0.1 yesterday and he seemed to do okay with this. He also got put on a scheduled low dose of Versad to help keep him relaxed. He is still able to receive PRN/bolus doses (acronym for 'pro re nata' meaning "in the circumstances" in Latin) of Morphine, Fentanyl, and Versad if he needs them.


He has had a couple instances where he gets uncontrollably upset. This happened once last night for no known reason and twice this afternoon from suctioning his breathing tube. During these events his face turns the color of a blueberry, his heart rate spikes to the 190s, his pressures to the 130s/140s systolic, his oxygen saturations drop to the 60s, and he forces fluid out of his chest tube. Two of these three times he had to receive extra sedation because he was taking too long to recover on his own. When he gets this extra sedation, he looks stoned. I have yet had the heart to take a picture of him when he looks like this because he looks so goofy. Also, it's been rainy outside and more dark in his room to help keep him calm so it has been more difficult to get good pictures. Hopefully getting out his Foley, chest tube, and/or breathing tube within the next couple days will help his comfort level increase.


So little baby steps is what he is taking and that is exactly what he needs to do. We are so proud of Caelin for working so hard to make progress! He is hearing and responding to all your support!

Recovery: 3rd Surgery, 1st Day

Caelin after Aortic arch repair. 6.5.12

His first post-op night went well. He did not have any major complications or really even many minor ones. The night nurse, Kelsey, had to manage and treat the normal things of any post-op child. Some of these were balancing and adjusting medications, giving doses to increase his glucose and other levels, repositioning, suctioning, stripping his chest tube, tweaking his ventilator settings, etc. She said the only concern throughout the night was an isolated incident of Caelin's pressures and heart rate spiking but she suggested this happened because he woke up and fought against the sedatives and paralytic. He did settle with an extra dose of pain medication and his heart rate and pressure lowered.


Throughout the day the nurse had to constantly monitor his blood pressure and heart rate because they were on the higher side. Of course this is expected to an extent because he just had a major surgery, but it also did not help that he was being stimulated by (necessary) visitors. He had an EKG, an echocardiogram, CPT (chest physical therapy- for his lungs with being on the vent) every 4 hours, was rotated (with a chest tube coming out of his abdomen & his chest being freshly cut open), got his chest tube stripped and manipulated to try to rid it of any clots, and had many visits from doctors and specialists. Once he was left alone, his pressures and heart rate lowered but he did have to receive an extra dose of Morphine and Versad here and there. 


He was on the paralytic until about 5:00PM. The intensivist, Dr. Bingham, decided to take him off of it to see how he does- they do not like to keep children on it any longer than necessary. Within 15 minutes of turning off the drip, Caelin started to suck on his breathing tube. Sean and I love when he does this because, like we said before, it shows a sign of comfort and that his personality is still there. So he is doing fine off of it. We think he is enjoying being able to move a little, although it must still be painful. He cannot focus yet with his eyes because he is on Morphine, Versad, and Tylenol but he opens them, especially when we talk to him they get really wide.


He has been on a medicine called NiPride to help with his heart function, in addition to the Milrinone. The NiPride was on the maximum dose but this afternoon they were able to almost half it (a little at a time) because his blood pressures and heart rate lowered. They would not lower it until his pressures were consistently 95 systolic or below. So it is a good sign that they were able to lower the dose!


Also, this morning Caelin started at 85% oxygen and now he is down to 45% oxygen. Since they took him off the paralytic, he is even initiating a good amount of breaths on his own when he is awake- another very good sign!


His chest tube has not drained anything since around 7PM Monday night. This is shocking because normally fluid has to drain from around the heart after surgery. A couple PAs came in to manipulate the tube to see if a clot formed on the tube, but even with working their magic, they could not get any fluid or blood to come out of the tube. We are just really hoping fluid does not start building up in his body or around his heart because that could be dangerous. He does receive a dose of Lasix every 8 hours to help with getting excess fluid out of his body. His whole body is very swollen, which is typical for him after surgery, so the Lasix is helping this, too. His G-tube is being continuously vented and has some bloody fluid draining out slowly; the day nurse, Laura, said it is not really concerning.


His echocardiogram from today revealed there is no fluid around his heart, he still has mild tricuspid regurgitation, and his function is still moderately to severely depressed but with an ever-so-slight improvement. The cardiologist, Dr. Wilmot, said he feels Caelin is in a good place right now considering where he came from. That is all we need to hear- that our baby boy is heading in the right direction. We know time will be his friend and help him heal. And also, that even the slightest improvement is still an improvement, so we will gladly welcome it.


As usual, the staff here at All Children's is wonderful. They are so compassionate and dedicated toward Cael. They will never know how much we appreciate them. Even tonight Cael's nurse, Kelsey, brought him a present! She and Mommy had a discussion a few weeks back about something called a WubbaNub for Caelin's binky. It is an adorable little stuffed animal attached to the back of his big, green obnoxious binky (which he refuses to give up for smaller, cute ones) to help keep it in. Mommy and Daddy had debated buying one but decided to wait until he was home (thinking home would have been sooner than later). So tonight Kelsey brought him an elephant WubbaNub! It is perfect because we love elephants and what they symbolize (Again, Mommy is really in to the meaning of names and figures). As a Chinese symbol it represents longevity, good luck, and happiness- that is exactly what we wish for Caelin. In Western culture it often represents strength, royalty, and stability. So ultimately, it is the best WubbaNub animal for Caelin and this gift means more to us than she could know. Thank you, Kelsey!


As a side note, Caelin almost rolled over over the weekend. He came extremely close twice to where he is on his side completely and would have required just the slightest tap to complete the roll. We were so excited and hoped he would get it before surgery but he didn't. We are looking forward to watching him accomplish this milestone and many others after he has recovered from this procedure; however, we are a bit nervous now because his chest is going to be fragile for quite a few weeks and Caelin is such a strong little boy, we hope he does not try to overdo it too much!


As always, thank you for your prayers, thoughts, positivity, and support. Love, love, love to you all!

Surgery #3: Reconstructing Aortic Arch

So sweet <3

Family photo before the Telethon interview.

Caelin cuddling with Daddy before the OR.

Monday morning... Caelin falling asleep on Mommy's chest before heading to the OR.

Family photo before Caelin's 3rd surgery.

See you later kisses from Daddy.

Mommy reminding Cael to be strong and behave.

Resisting the ridiculous amount of pain killers.

Caelin after surgery.

Caelin hooked up to the ventilator, Somanetics, and all his lines.

Yesterday was the All Children's Telethon. The total amount of donations given was $3,745,402! What an amazing amount. Caelin did get to make his television debut; however, he was sleeping the whole time! haha It is probably better this way because he may have been overstimulated and upset with all the people and bright lights in his room. The interview was short and we weren't able to hear the dialogue between Jennifer (newswoman in our room) and the other news person so we were not always sure when it was appropriate to talk but nonetheless, we were able to share part of Caelin's story with Telethon viewers. The interview will be on YouTube in a couple weeks but you can look at pictures right now on All Children's Website. 


While the cameras were there we were happy to share Cael's story but after they left, the reality of his next surgery being 18 hours away set in. Fear and anxiety crept into our minds and, despite being overshadowed by hope and faith at times, found no escape. These feelings carried into this morning and afternoon. Mommy and Daddy spent all their time with Caelin until 8:25 AM when he was wheeled back into the OR. We could tell over the past couple of days that Cael was rather quickly becoming more lethargic, sleepy, and distant and although we were scared for him to undergo his 3rd open-heart surgery in 10 weeks, we knew it was what had to be done to help his heart and it needed to be done now.


Caelin fell asleep on Mommy's chest before being placed in his bed and rolled to the OR. Luckily for all involved, he remained voluntarily sleeping until he was given anesthesia. In front of the double doors, Daddy kissed Caelin and gave him a loving pep talk. Then it was Mommy's turn and separation anxiety took over her body. It took everything she had not to have an emotional breakdown then and there. In fact, the only thing that kept her from losing it was knowing she needed to be strong for her little boy who had no choice but to be strong. So she kissed him, gave him words of encouragement and faith, reminded him of how many people love him and are praying for him, and said, "I love you" at least a dozen times. With that, we put our trust, faith, and Caelin's life in the hands of the surgeons, their team, and God. 


From 8:45 until 4:20 PM we anxiously awaited updates in the family CVICU waiting room from the OR. We received our first update at 10:11AM from the nurse saying Dr. Chai had just started the procedure. They had to wait for the Monday morning conference to be over, get him under the anesthesia, restart his necessary medicines, put in a peripheral IV, and replace his femoral Central and Arterial lines. We then received four more calls, at 11:07 AM, 12:37 PM, 1:24 PM, and 2:02 PM, updating us on Dr. Chai's progress and Caelin's stability and tolerance. At 2:02 PM the nurse informed us Dr. Chai had just closed Cael's chest and would be coming out to speak with us soon. Caelin returned to his room at 2:50 PM but we were not allowed to go back until 4:20 PM. During this hour and a half the surgical and nursing staff worked together to get Caelin stable in his room and lower his blood pressure. Also, they gave him the maximum amount of Fentanyl and Morphine they could to get him to settle and be comfortable. But being the resilient warrior that he is, nothing can keep him down... he refused to succumb to the potent drugs. The anesthesiologist commented that he had given Cael enough pain medication to knock out an adult. The nurses were joking that he takes more pain medication to be sedated than does a horse. With that, Daddy told the nurses that they may want to contact a veterinarian when Cael comes in for his Glen.


We are thankful Caelin did not have to come out on ECMO; however, if his heart function does not improve he may need to go on it for a day or two to let his heart rest. Coming right out of surgery, the function of Caelin's heart was worse than it was going in. Dr. Chai had forewarned us this may happen as a temporary response to the change in pressures and undergoing the stress of the procedure. Caelin had to be on bypass for 137 minutes and his body had to be cooled through a careful process. Because of this, his recovery in the OR took a little longer. Caelin received an echocardiogram around 5:00 PM to make sure there was no fluid developing around his heart. The echo showed there is no fluid around his heart and the function had improved slightly from where it was before surgery. Although Cael still has a long road of recovery, making it through surgery and his heart function showing slight improvement are good steps in the right direction. 


They are closely monitoring his numbers and managing them to get them back to normal. Right now, his blood pressures are still a little high, his CO2 output is low, his O2 level is low, his pH level is high, and his lactic acid is high- these are all things that need to be closely watched and continuously treated with manipulating medications, ventilator settings, and such. Hopefully these numbers balance out a little over night and head in the right direction.


As always, thank you for your thoughts, prayers, positivity, support and encouraging/inspirational words. We appreciate them more than you know. And we know Caelin can feel every little bit from you all. We love you!

Mr. Giggles

Passed out. 

Happy boy playing with his rings in his Boppy!

Trying to look at his binky! HAHA

Snuggled into Daddy's chest. Yes, he positioned himself like that & yes he is sleeping this way. 

Talking to Mommy.

Tummy time & looking at himself in the mirror.

Dollface. 

On Thursday, May 31st Caelin laughed for the first time. He has been smiling for a few weeks now but he finally got out his first giggle! Mommy cried tears of joy as she watched Caelin smile and heard his laugh to go with it. The only thing that would have made this moment better is if Daddy was there, too. Caelin has had a few more chuckles since then and Daddy was able to hear some of them! Caelin's happiness amazes us! While Caelin was full of smiles and laughs on Thursday, he had a visitor come into his room. Marc, a nurse from the cath lab who was in there during Caelin's cardiac arrest, stopped in to check on Cael. His last day as a nurse in the cath lab was Friday (yesterday) because he transferred back down to the ER so he was coming to say goodbye. On more than one occasion Marc has been an advocate for Cael and helped take good care of him so we are sad to know he will no longer be up on the Cardiac floor but we are thankful for all he has done. We know he felt bad about Caelin's cardiac arrest and having to go on ECMO; however, I reassured him that if it weren't for the quick and confident actions of him and the team, Caelin may not be alive and would not have been able to make as much progress as he has, have no brain damage, and be laughing the way he is now. So thank you again, Marc! We will miss you but we send our best wishes to you in your new position!
We forgot to mention in the last blog that Caelin had a visit from Dr. Hess, an opthamologist. He came on Thursday to check Caelin's eyes and the obstruction in his nasal passage. It was determined the obstruction is from his blocked tear duct so Dr. Hess showed Mommy how to massage the bridge of Caelin's nose properly to try to get the bottom of the obstruction to open. Other than the blocked tear duct, Caelin's eyes look perfect! His pupils respond to light appropriately, he follows objects well, looks toward sounds, and his anatomy is normal. Of course, we are happy and relieved with this news.


On Friday Caelin had a follow up echocardiogram. The function of his heart is still moderately to severely depressed but it has not gotten worse over the last couple of days. He also had an EKG to check the electrical activity of his heart. It was abnormal but correlated with the function of his heart, so the doctors were not surprised. He had a follow-up EKG this afternoon (Saturday) and the cardiologist said it was the same.


Dr. Quintessenza stopped into Caelin's room on Friday morning to let us know he will be in the operating room with Dr. Chai during Caelin's arch repair. This pleased us very much because we want the best of the best for Caelin. Since many of the doctors are hopeful that the surgery will help his heart function but cannot guarantee it or predict to what extent it will help, we believe Cael will benefit most from the expertise of both surgeon's. We also want Dr. Q to be familiar with Cael's case and anatomy if ever in the future, God forbid, there is an emergency for which Dr. Q must respond. Dr. Chai resides mostly in Tampa and therefore is farther from the hospital and is not at All Children's nearly as often as is Dr. Q. So we are thankful that they can both be in there during the surgery.


Dr. Saltiel decided to put Caelin back on 0.1 mL of Methadone twice daily. He is also not going to wean Cael's Valium. The reason for his decisions is to prevent Caelin from experiencing even the slightest withdrawal (which includes running a fever). If he has a fever, he would not be able to go to surgery on Monday and would have to get blood tests done that take 48 hours for results. So although we do not like him being on the drugs, it is better this way because we do not want anything getting in the way of his imperative surgery.

After all he has gone through and despite his heart's function being moderately to severely depressed, Caelin is so unbelievably happy. Everyone who comes into his room comments on how happy and alert he is and how great he looks... unfortunately, looks can be deceiving. 

As a reminder, tomorrow (Sunday) is the telethon for All Children's Hospital. Caelin will be a featured story at 4:39PM. The news crew will be coming in to Caelin's room to interview us and allow us to tell his story and share his experience at All Children's Hospital. We are extremely excited for this! The telethon is only televised locally; however, they will be streaming live on All Children's Website. Please watch the telethon if you can and support Caelin's story and hospital. We are fortunate to be at this phenomenal hospital and to have a child who is a miracle. 

We hope to post an update tomorrow evening after the telethon but sometimes life gets busy. So in case we do not have a chance to write one, please remember Caelin goes in for his open heart surgery on Monday morning. Dr. Chai will be coming by around 7:00AM to go over the surgery with Mommy and Daddy and Caelin will be going back to the OR around 9:00 AM. Please pray for our baby- your prayers have been so powerful and appreciated and he will need them now more than ever.

One last thing. Caelin offically has his own Facebook page! Many of the information posted on here (his blog) will be more in depth than his blog, but it is just another way to share his story! We plan to put more pictures on his Facebook page. Click here to visit and "like" his page! :)

God Gave Me You

Aunt Cassie!

<3 Family!!!

Back to the binky! :)

Cuddle Time- Wednesday 5/30

Yesterday afternoon, Dr. Nardell (cardiologist), Dr. Wilmot (cardiologist and transplant doctor), Laurie (Nurse Practitioner-CVICU) and Diane (Nurse Practitioner-transplant) all came in to Caelin's room to discuss the results of his follow up MRI and his next surgery. Mommy was only expected Dr. Nardell to come in to give her an update and therefore was unprepared when they all came in to provide information overload.


So they first discussed the MRI- it is clear. His brain still shows no damage from his cardiac arrest and CPR. With these results, they spoke with the neurologist, Dr. Andrews, and got Cael clear for open-heart surgery next week. They did not want to do surgery too soon because they want his brain and the rest of his body to heal a little before they put it through another surgery. 


The next thing they discussed was the scheduled surgery. Caelin was on the books for Wednesday, June 6th but Dr. Nardell does not want to wait those couple extra days and ask Caelin's heart to continue to work so hard. With this thought, she asked Dr. Chai, Caelin's heart surgeon, if he could change his schedule to have the procedure done on Monday. Dr. Chai was able to make this happen, so Caelin will be getting his third open-heart surgery on Monday, June 4th. They have not scheduled a time yet but it will most likely be in the morning (between 9 and 10). Dr. Nardell explained to Mommy the decision for how Cael's surgery will be addressed: they will re-open his chest and go in from the front as opposed to the side to get a better view and have the best chance possible of fixing the Aorta. Also, they will put him on bypass because it is safer for his heart and this surgery; but the surgery should not take as long as the Norwood so he will not be on bypass for as long. 


After Mommy agreed with the doctors' decisions and asked a question or two, they disclosed their concerns and addressed all the "What ifs." This is the part Mom had not planned for. Had she known they were going to travel over these bridges and down these dark alleys, Mommy would not have spoken to them without Daddy's presence. She wishes the doctors would have offered to come back later when Dad was around, knowing the information they were going to share with me was the heaviest it could be. Although the doctors want to believe the surgery will be successful and help Caelin's heart function get back to normal, they know his body has a history of being unpredictable and they want to be as prepared as possible, as well as prepare us. They talked about the chance of Caelin coming out of surgery on ECMO if his heart is not immediately responsive to the surgery or he experiences complications. They discussed how long they would leave him on ECMO if his heart does not improve before putting him on other life-support devices, such as VAD (Ventricular Assist Device), and on the transplant list. They started to get into details of how getting him on the transplant list works and common things that prevent kids from being a good candidate. They began to explain how having a child with a transplanted heart can affect the whole family. At this point Mommy said that we could talk about those details if it became necessary. Afterward, the doctors commented on how we may be faced with making life decisions and they even said if we were not interested in putting Caelin on the transplant list if he had no other options, then it is not something we have to do. That we can say, "Enough is enough." Well they are wrong, because there will never be a point where "Enough is enough" because our little boy is a fighter, a warrior- he has shown that he wants to fight to live and he is determined to continue to fight to live. And we will help him do that by any means necessary.


After this discussion, Mommy felt like the doctors were pessimistic about the procedure to fix his coarc to improve his heart function. She started getting nervous and allowed her mind to travel down those heartwrenching paths. She expressed some concern to the head nurse of the unit, Susan. Susan asked Dr. Nardell to come back to talk to Mom. Mommy told Dr. Nardell that she felt like the doctors have a high concern the surgery will not fix his heart. Dr. Nardell reassured Mommy that was not the case, that they just want to plan for the worst because Caelin's body is complex and unpredictable and it is better to have everyone prepared than scrambling in an emergency. This made Mommy feel a little better but still nervous. Wanting everything done to the best of their ability, Mommy asked Dr. Nardell if Dr. Quintessenza (head heart surgeon who did Caelin's emergency bed-side reopening to remove the clot from his shunt on March 26th) could do the surgery. We realize Dr. Chai has an advantage with the surgery because he did Caelin's Norwood; however, Dr. Q has been around for longer, has more experience, and we have seen his passion for his patients. Dr. Chai primarily does cases in Tampa at St. Joes. Dr. Nardell listened to Mommy's concerns and agreed that Dr. Chai has an advantage and Dr. Q has been around for longer. But she also informed Mommy that Dr. Chai trained under arguably one of the best surgeons in the world who specialized in HLHS. With that said, she offered to talk to Dr. Q to see if his schedule allows for him to be in the operating room with Caelin and Dr. Chai. Apparently sometimes they have two surgeons in one case if the availability is there and it is beneficial for both of them. At this point Daddy arrived, and we told her that we would greatly appreciate that. She also offered to ask Dr. Q to stop in to talk to us and we told her that would be great. So hopefully within the next couple of days Dr. Q will be able to stop in to talk to us and tell us that he can be in the OR with Caelin.


With all that being said, Caelin has been pretty stable. His numbers are great, except his blood pressures are a little high and his heart rate fluctuates from the 120s to the 170s. He will be receiving an echocardiogram this morning and another over the weekend to monitor his heart function. His heart function does look better than it did right before ECMO and while on ECMO; however, it is not completely recovered. And its abnormal function is what is concerning to the doctors and us.


Caelin is our little miracle sent from heaven and I believe he was given to us so we could help him get through these ups and downs. God gave us Cael and He gave Cael us. Please continue to pray for our little warrior as he still has an immense amount of healing and recovery do. 




As a side note, the All Children's Hospital Telethon is this Sunday, June 3rd, 2012. This is a live localized televised event on News Channel 8 and CW 6. Apparently the news crew comes into the units and interviews one or two patients live. Since the children in the CVICU currently are so young, Susan (the head RN of CVICU) asked me, Mommy, to be a spokesperson/interviewee and share Caelin's story. She said that Caelin is, "Our little miracle baby," and she would love for me to speak on his behalf. I am honored and excited to share Caelin's story! If you are interested in donating and do not have access to the televised event, you can go to All Children's Telethon Website and make a donation. 

Miracles Happen.

EEG wires removed- so nice to rub his head again.

Talking to Great Aunt Sheri.

Sleepy, snuggly boy.

Friday’s brain ultrasound report came back normal. The report read that the previous subtle asymmetrical increase echo in his right temporal lobe was artifact. We were all happy with these results and had no direct medical concerns but the doctors still wanted to get better pictures for informational purposes. With Caelin’s impressive stability, they ordered him to have an MRI before he is extubated (taken off the ventilator). He was supposed to go down on Saturday at 2:00 PM but as Cael’s nurse was getting prepared for the trip downstairs, they called to reschedule for Sunday at 9:00 AM. Also on Friday, the EEG wires were removed from Caelin's head- the improvements were favorable and the neurologist felt his brain activity no longer needed to be monitored.

Caelin’s echocardiogram from Friday showed strong heart function. His heart is squeezing tightly but the Coarchtation (obstruction in his Aorta- aka Coarc) still has created a 20-30 mm pressure gradient. This Coarc needs to be fixed soon. Ideally they would like to wait until his Glen in August or September but Caelin does not have the ability to wait that long. So their second ideal situation is to wait two weeks and address it surgically for it to be a definitive fix. If he cannot wait two weeks, they will fix it with a stent that will be intermittently dilated as his body grows. The doctors have a weekly conference- this week it is on Tuesday because of Memorial day- and Caelin is on the list of patients to be discussed. So hopefully next week we will have a better idea of what Caelin’s heart can sustain and what their plan is to fix his Aorta.

So Friday night, all day Saturday, and into Sunday morning Caelin was stable. He was awake, alert, interactive with visitors and even began smiling again. Every doctor, nurse, respiratory therapist, and CVICU staff member marveled at Caelin’s miraculous improvement. Each time our eyes met Cael’s we felt comfort and love permeate throughout our bodies. This feeling and connection with our son after the event we experienced on Monday is unlike any other.

Caelin went down to the MRI around 9:30 AM on Sunday. Mommy and Daddy were nervous for this procedure because although it is supposed to be straightforward we were afraid it could create another incident like Monday’s (Considering the cath lab was supposed to be a relatively straightforward procedure). Caelin needed to be put on cardiac anesthesia because he was wide-awake during his travel downstairs. Mommy walked backwards out of the room, keeping her eyes on Caelin as Dr. Rodriguez carried him to the MRI machine. The doors slowly closed and locked in front of Mommy’s face and tears began flowing. Just as she looked over at Sean, Dr. Rodriguez yelled something that sounded like “Code.” Code means emergency. As an immediate response Mommy’s knees got weak, her heart started racing, and she couldn’t breathe. She tried pulling on the doors but to no avail. The nurses and Daddy came over to Mommy to calm her down- after realizing everything was okay in the lab, Mommy was directed to the waiting room with slight resistance. Later, Dr. Rodriguez told us he said, “It’s Cold,” referring to the temperature of the room. However, combined with his deep, loud voice, accent, and Mommy’s fears- she heard the worst. Thank goodness Cael made it through the hour-long procedure just fine. We got the results and they show that Caelin did not sustain any damage from lack of oxygenated blood flow during his cardiac arrest and 50 minutes of CPR. But it did show a possible tiny brain hemorrhage between his brain and skull- this is an unusual place for one, so they are hoping it is artifact. Because of this, he will have a repeat MRI tomorrow to check just that small part. This should take approximately 7 minutes so he does not need to have anesthesia or be intubated. The MRI also showed there is some sort of spherical obstruction in Caelin’s right nasal cavity. Because of its perfect spherical shape, the doctors believe it to be a benign polyp/cyst but an Ear, Nose, and Throat specialist will be by today or tomorrow to check it out. Dr. Pettigrew, the head intensivist of the unit who was on all week, is shocked, to put it plainly, that Cael did not sustain any brain injuries that they can detect and that Cael and his numbers are near perfect for his condition. We all truly are so completely astonished with Cael’s improvement in just a week! Our little guy never ceases to amaze us, or the whole hospital staff! 

Leaving the room to go to the MRI.

Caelin on his trip to the MRI lab.

With all that said, Cael was extubated this morning and boy is he ever glad to have that tube out of his throat! He was supposed to be extubated yesterday but the anesthesia from the MRI made him too sleepy so Dr. Pettigrew felt more comfortable waiting until this morning. So he no longer has the breathing tube in but he does have a nasal cannula. It is protocol for children to get a cannula placed immediately after extubation to help them progress back to normal, independent breathing. One good thing is that he is stable on just 5.0 liters of flow at room air (21% oxygen) so the de-cannulation process shouldn’t be too long, hopefully. 

Extubated! Just on 5 liters of flow through the nasal cannula! 

Doing the "Happy Dance" after being extubated.

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On Thursday night one of the techs, Misty, asked Mommy if she ever read the book, Heaven is For Real: A Little Boy’s Astounding Story of His Trip to Heaven and Back by Todd Burpo. After saying, “No, I have never even heard of it,” Misty gave Mommy her Nook with the book downloaded on it. If it had not been such an emotional and relevant story, Mommy would not have put the book down before finishing it. It was just too soon after Cael’s incident to read it all the way through- Mommy had to take breaks to relieve her overpowering thoughts and emotions.  In the book, the father, Todd, tells Colton’s story. Colton talks about seeing his dad praying in the waiting room during his operation and shares how God told him he could not stay in Heaven because He was answering his (Colton’s) dad’s prayer. Also, Colton tells of meeting his miscarried sister and shares many other remarkable particulars of what and who he saw while in heaven. 

One part that stuck out to Mommy is about the power of prayer. Todd writes, "I thought of the times where the Scripture says that God answered the prayers, not of the sick or dying, but of the friends of the sick or dying..." We are so thankful for all the love and support given to our family- all the prayers and thoughts from family, friends, and fans from around the world, the dedication from the hospital staff, and the spontaneous, heart-driven visits from Great Aunt Sheri, Great Aunt Keetha, and Aunt Cassie! We could not ask for more selfless, wonderful people in our life. Thank you for your genuine generosity & love. Never underestimate the power of prayer.

Whether or not you believe in God, the details this little boy shares about his experience are inexplicable and astonishing. This story also accounts for the normality of questioning and doubting God and His existence during heartbreaking and devastating times… but it also draws light on the reality that miracles can and do happen.

Off ECMO & 10 Weeks Old

Aunt Cassie & Cael.

Family Love.

More Family Love.

Our 10 week old fighter!

Baby Cael. <3

Caelin came off ECMO Wednesday evening- the cannulas were pulled out at 4:56 PM. The doctors and nurses prepared us for Caelin to have a night with instability but he did great! Over night and into the morning the one major concern was the pulse in his right foot kept coming and going. There was a decent amount of time that the night nurse could not feel it. She changed the dressing over his Arterial line and site from the cath lab because the old dressings were soaked with blood; after this his pulse returned. Also, his hematocrit and hemoglobin were down a bit so they gave him 80 mL of blood. 

I have to say- the nurses, doctors, and staff are amazing at All Children's hospital. Caelin has had so many people coming into his room just to show him some love and check in on him and us. On Thursday morning alone he had four nurses, three techs, two perfusionists, three cardiologists, the intensivist, the nurse practitioner, the neurologist, the occupational therapist, the physical therapist, and skin team stop in. This does not include all the people who came in and out Monday evening, all day Tuesday, and all day Wednesday offering love, support, and help in any way. We are so blessed for Caelin to be at this hospital for his care.

Thursday morning Cael had a cranial ultrasound that revealed he had a very subtle asymmetrical increase echo in his right temporal lobe which could be possible artifact or due to underlying edema. Despite this, the neurologist, Dr. Andrews, said he has had favorable EEG improvement. This morning at 10:45 AM he had repeat ultrasound but we are still waiting for the results. If the area looks the same or worse, Caelin will be making a trip downstairs to get a CT scan for a better picture. We have not discussed what interventions would be taken if this area is not artifact or if it does not self-correct as Caelin's body heals from his cardiac arrest on Monday.

The doctors wanted Cael to just have a day of stability and as little stimulation as possible on Thursday (yesterday). They did not order an echocardiogram because they wanted to leave him alone as much as possible. So he had an echo this morning at 8:30 AM and we are still waiting for the cardiologist to analyze it and discuss his report with us.

So the changes made yesterday were: his Fentanyl (pain med) was lowered from 3 to 2 mcg/kg, they got rid of his Vec drip (paralytic), increased his HEParin drip (anticoagulant) to 21 units/kg from 17, came down on EPInephrine (adrenaline) to .05 mL from .08, continuing TPN and lipids for nutrition, and he went down to room air on the ventilator (21% oxygen). He had a very stable day and night (into Friday morning). Around 10:00 PM his heart rate lowered, between 110-120, and his oxygen saturation went into the mid 90s. This situation made Mom and Dad very nervous because these were the conditions that started leading to Caelin's heart failing last week. We know his Aorta is still a problem that needs to be addressed soon and we are terrified of history repeating itself. After almost 45 minutes his heart rate went back up into the 120s and his oxygen saturation returned to the 80s. His lactate (checks level of lactic acid- which is a good indication of the heart experiencing stress) test came back at 0.8 which indicates his heart was not under stress. This number combined with the rest of his blood gas results showed that his heart is doing fine. - This was a relief to Mommy & Daddy but it is still something that is being monitored closely.

The only changes today are going down on 26 breaths/minute on the ventilator and 0.03 on EPInephrine. They are keeping his pain medications the way they are because he is actually quite awake on them. He was awake this morning for almost two hours, in addition to being awake on and off through the night. This morning the lights were off and he had his eyes wide open. He was looking all around and even moving his head a little bit. He continues to respond to Mommy and Daddy’s voices. This morning he even started looking back and forth at Mommy on his right side and Daddy on his left. As Mommy talked to him, he looked at her. Then Daddy would talk to Cael and he would move his eyes to focus on him. It is so great seeing Caelin making this progress back to where he was against all odds! Amazing and miraculous are becoming understatements for him- there really are no words to describe Caelin’s personality, triumphs, and how lucky & proud we feel as parents to have him as our son.

Thank you for continuing to pray for Caelin. Every prayer, thought, & bit of positive energy has helped him recover to where he is today and will continue to help him recover!