PROGRESS!

Snuggle time!

We are so excited that we get to hold our little Daniel! This was the first time since last Friday, February 25th.

This was Daniel's first feeding in over a week. Of course, he was given nutrition through his IV's during the course of the week. The doctors wanted us to start with the bottle to see how he reacted to it.

It took him a couple of minutes, but he quickly got the hang of it again and ate a lot! He's got quite the appetite!

He got a bubble in his tummy and was upset that the bottle was taken away while we tried to help get the bubble out.

Below: Full tummy, happy and relaxed sleeping in mommy's arms.

POST-OP

Daniel was kept under anesthesia for 24 hours after his surgery.

The reason for the continued anesthesia was to keep him from moving and prevent possible injuries to himself. They took him off the anesthesia on Thursday morning and told us that he may not open his eyes or be alert for another 24 hours.

He actually opened his eyes around 2:00 that afternoon! So exciting! As you can see from the pictures, his breathing tube was removed from his mouth shortly after he was alert and they gradually eliminated all of his IV infusions.

UNDER THE KNIFE

We have learned that a lot of hospital time is spent waiting. The "hurry up and wait" syndrome as it has been called by a couple of RN's here.

We had hoped to talk to the cardiac surgeon on Sunday and that didn't happen. We expected to talk to the surgeon on Monday, but that didn't happen either. When Tuesday rolled around, we thought we might catch the surgeon in the morning and guess what? That didn't happen either.

Mike decided to drive back to Wichita to take care of school issues (he's attending WSU working on his Master's in Mechanical Engineering) and to see Lauren and Joshua. He left the hospital at 11:30 because we were tired of waiting and expected that Tuesday would be another full day of waiting.

Unexpectedly, the cardiac surgical nurse and the surgeon, Dr. Gandy, came to see me around 4:30 and told me that he was scheduled for surgery on Tuesday morning at 7:30!! I was so excited that we were going to go from waiting mode to recovery mode the next day! BUT, Mike had just been in Wichita for an hour when we got this news... so he rushed around and got the things done that he needed, got back in the car and drove back to KC. Crazy!

Daniel all ready for surgery.

I called some friends in the area who used to live in Wichita (the Rowe family) and they rearranged their schedules in order to come and give Daniel a priesthood blessing on Tuesday night. I am so grateful for them (and their home teachers) who made the trip and gave their time to come for our little guy.

This is a picture of the echocardiogram they performed on Monday. One last look before they could make the decision for a surgical date.

In the picture above, the grey colored band around his arm is a wrist restraint. Remember how I said in a previous post that he was a little Houdini? Well, he was getting so good at getting his hands up in attempt to knock all his tubes and wires off of himself that they put those soft wrist restraints on him. They are tied to his thighs- he still has room to move his arms around, but they limit the distance his hands can move up.

Wednesday morning, Daniel was taken back to the Operating Room at 7:30. We watched him get wheeled away on his little bed and then we were sent to the waiting room. The nurse came a couple of times during the surgery to give us updates. It wasn't until about 10:45 that Dr Gandy (surgeon) came out to talk to us in the waiting room. She told us that it went really well and that Daniel's pulse was looking great throughout his whole body. Yay!

And guess what? We still had to WAIT! We were finally able to go back and see our little Daniel around 12:30. The hour and 15 minute wait from the time the surgeon came to talk to us until when we got to go back seemed excruciatingly long!

I love baby feet!!! And his feet actually have a pulse in them now. His toes were so happy to have a good blood flow in them that they stayed red and puffy for a while. His legs even look more round and healthy!

In the above picture, Daniel has a monitor on his forehead which measures oxygen flowing through the bloodstream. He has another one on his back (near the kidneys). His numbers are great! His surgical wound is on his left side towards his back (our right). The blue-ish tube coming down and looping on top of his diaper is for wound drainage. (Sorry for those of you who are squeamish.) We were told that his incision is about 3 inches long and was closed with staples that will hopefully be removed within a week. He is currently on 6 types of medicines and fluids.

We have been blessed to have the same day time nurse, Kara, for the past 3 days. She knows his situation and requested to be his nurse again for today and tomorrow. Daniel is her only patient today because he takes priority being a post-op kid. Kara is very thorough and gentle with our little guy when she has to move him or change anything for him.

We feel so much relief now that we have changed into recovery mode. We are hoping that he may be able to get off of the breathing tube tomorrow.

THE DIAGNOSIS IS....

Daniel is officially diagnosed with

Coarctation of the Aorta (or CoA)

In this condition, the aorta (the main artery that carries blood from the heart to the body) is narrowed or constricted. This information is taken from the American Heart Association website - americanheart.org

Surgery will be performed on Daniel. He will not have his heart opened to repair the defect. The surgeon will remove the narrowed segment of the aorta by entering through his left side between his ribs (thoracic area). Then the healthy portions of the aorta will be stitched back together. We were told that it's about a 15 minute procedure, but they want him to be as healthy as possible before the surgery. This is the reason why we have been waiting around for the past few days.

The medical staff is routinely checking our little guy by doing daily chest x-rays and blood testing. He has had 2 echocardiograms in the past 3 days. We are just waiting for the surgeon to review all his information so we can get the surgery on the calendar. After the surgery, Daniel will eventually be able to feed via feeding tube. Hopefully he will be able to breast feed shortly after that. His time in the hospital will be determined by how quickly he takes to feeding again. We'll be able to go home as soon as he's back into a normal feeding routine.

CHILDREN'S MERCY HOSPITAL

We quickly got settled in our room at Children's Mercy Hospital (CMH). Daniel is looking as comfortable as he can be.

All the nurses keep telling us that he is the cutest little baby they've seen (they must say that about every baby to every parent). They tease about not letting him go. The blue and white striped little bear that is holding up his respiration tubes was made by a women's church group and donated to CMH. They also make quilts and blankets for the babies in the NICU.

The IV lines that were placed in his feet in Wichita were finally removed because they were not working correctly. Although those are gone, he's still constantly trying to pull at and rub everything on his face and in his mouth. They put that white blanket across him in attempt to keep his arms down, but he's a little Houdini and has managed to wiggle out of it numerous times.

As you can see, Daniel is constantly monitored. The machine on the left is for respiratory. There is also an IV drip on the left. The thing above him is a heater - if he feels a bit cold, it gets turned on. It also monitors his body temperature. The monitor screen on the top right is a split screen for the two patients the nurse is monitoring. It is for Daniel's stats (heart rate, O2, blood pressure). The boxes below the monitor are administering drugs, glucose, nutrition, etc to Daniel through his IV lines.

These whimsical characters are hanging from the ceiling in the lobby. The entire hospital is decked out and decorated for children.

This is the rotunda floor near the main entrance. This picture doesn't do it justice. It's very shiny and actually has flecks of reflective materials in it.

We even spotted a whale at this hospital!

BIG RIDE

Saturday morning came around and we waited (yet again) for information about when we would get to leave Wichita and fly to KC. We finally received a call and found out that we would be leaving around 2:00pm. So Mike quickly got the kids ready and brought them up to the hospital so I could see them again before I left. We all waited in the hallway so they could do the necessary procedures to prepare and move Daniel to their equipment.

Lauren and Joshua colored in their coloring books in the hallway to pass the time. Lauren was singing at the top of her lungs and Joshua kept taking breaks to run down the hall. So much energy!

This is the gear that the flight team hooked Daniel up to. The whole family was able to ride on the elevator down with him. Lauren was fascinated by it all and wondered what they were doing to him. We explained the best that we could to our 3-yr old Lauren that he was safe and warm in there and that he was going to get help so he can get better. Both kids flipped out when we got outside where Daniel and I were rushed onto the ambulance. Poor Mike had to walk through the hospital with two sobbing kids.

We were taken to Jabara airport where we got onto a King Air airplane. Every single man on the transport team were extremely nice, caring and knowledgeable.

These three guys were the medical team that monitored Daniel through the entire flight. I'm so grateful that we flew because he seemed to have a few problems while on the flight which may have been too risky if we were to travel the 3 hours on the ground to KC.

This was a 45 minute smooth flight. We had about a 10 minute ride by ambulance to Children's Mercy Hospital from the airport. Once we were there, they rushed him back to his room where they checked all his stats again and performed another echocardiogram. I waited for 2 hours and started to get nervous when someone finally came to get me. What a relief! We're where we need to be with doctors who can help our little guy.

WHAT'S WRONG?

On Thursday, February 24th, we took Daniel to our pediatrician, Dr. Barker, because he had been vomiting, choking and would stop breathing for a few seconds. Dr. Barker took a few minutes to examine Daniel and immediately sent us to Wesley Hospital to be directly admitted. Wesley Hosp was extremely busy and they had a difficult time finding us a room, so they sent us to the Emergency Dept because they felt we could get testing done more quickly there. After a bunch of questions, they sent us to get an ultrasound of Daniel's stomach because they thought that he might have pyloric stenosis. The ultrasound revealed that there was nothing wrong with his pyloris, so it was back to waiting...

Eventually, a doctor (Dr Hart) from the pediatric unit came down to examine Daniel. He thought he heard a heart murmur, so he told us that as soon as they could find a room for us, then he would get an EKG ordered for us. While we were waiting to be moved to a room, Daniel had another one of his choking and apnea episodes. The ED staff immediately took action and changed plans to have us moved to the Pediatric Intensive Care Unit (PICU).

While we were waiting (lots of waiting around), I called a guy from our ward, Jason Bailey, to come to the hospital and assist with a priesthood blessing. While Brother Bailey was there, Daniel had another vomiting and apnea episode. Scary!

We got all set up in PICU and an EKG was performed which had normal results. Early on Friday morning, Daniel had another episode and through the early hours of the morning, his breathing became even more labored with his O2 levels dropping significantly.

Our day nurse, Erin, had been floated to the PICU from the NICU where she normally works and showed a genuine concern for our little Daniel. She was really nervous about Daniel's breathing and worked on getting him on oxygen. First he had the tubes in his nose.

Then he was moved to a C-PAP machine which he absolutely hated and was pretty good at knocking it out of place. They were going to try to do an EEG to check on possible neurological problems (i.e. seizure), but the C-PAP head gear was too hard to work around so the EEG was rescheduled for Saturday (which never happened).

Eventually, a cardiologist, Dr. Bautiste, performed another EKG (normal results again) and then an echocardiogram. The echo revealed that Daniel has a problem with his aortic artery - a Coarctation of the Aorta (narrow artery). Dr. Bautiste was very quick to call Children's Mercy Hospital in Kansas City to try to get us a life-flight to KC. The weather was not good, so we had to wait through the night. The staff had already prepped Daniel for the flight by sedating him and giving him drugs to help with blood flow to his lower body. It was awful seeing him with the breathing tube, but knowing that he was stable helped us sleep better that night. I also had received a priesthood blessing earlier in the evening which brought me much needed comfort. (The red marks on Daniel's head in this picture are the beginning markings for the canceled EEG.)