Al's Story: The First Year

Up till now..

2008-11-16T16:13:00.000-08:00

Well at this point, it is mid-November and you can continue our story, me, J, my husband, R, and little Al at my regular blog, http://www.alanlovesapples.blogspot.com/. This page is just to catch up until now with Al's first year or so. Hopefully the next year is less crazy or at least a good kind of crazy.

We continue to be very grateful to the donor and family for choosing to give life to our little one. We're thankful to everyone who has chosen to be a donor and save a life - or many lives.

After transplant

Al went home feeling okay and on a very small dose of oxygen, about 1/32 liter. After transplant, checkups are twice a week for the first 12 weeks and then switch to once a week. He was doing well for a few weeks, even had a Curious George birthday party planned for about a month after his actual birthday.

Then, he got sick again. His breathing got worse and worse. His oxygen flow went up to being on 3/4 to 1 liter all the time - even more than before the transplant. So much that the oxygen delivery company got mad at me for calling asking for more all the time. His whole body swelled up and he threw on an extra 1 kg in water weight. He would wake up with his face so puffy that one eye would be swollen shut. And he was miserable. He'd cry all day long and nothing would console him. It was a lot worse than before the transplant.

At first his doctors thought he had gotten pneumonia and he started antibiotic treatments that didn't work. The were baffled because all the outward symptoms pointed to rejection but his ECHO (heart ultrasound) and EKG's all looked fine. We don't have any pictures of that time. Life was so miserable for all that there wasn't much time for any picture taking.
Eventually we decided to treat him as though he were rejecting and start a 4 day, 8 dose IV steroid treatment. Homecare came out to the house and gave the effusions. Several days later, it looked like it had worked. He perked up and lost his extra fluid weight and within another week or so was able to go completely off oxygen.

Now at this point symptom-wise, Al is fine except the reflux and feeding. He still has a hard time taking much of anything by mouth. He did just start eating dairy again and has been tolerating it. Yogurt is his favorite new food. He still gets most of his nutrition from taking formula through his tube.

We just have our fingers crossed that Al will be able to continue to grow and hopefully learn to do more toddler things like eat and play and become mobile and talk. Kids do not deserve to have this kind of life. But he's been a champ and gotten himself through it.

Ring, Ring, (or more like Buzz Buzz)

2008-09-07T12:49:00.000-07:00

One Saturday night in September, it was past 11 pm, Al was asleep in bed, mom was asleep watching TV and dad was on the computer. Suddenly, dad heard a faint buzzing sound and realized it was the phone. Mom had put her phone on vibrate earlier and forgot to switch it back to ring. He saw there were 20 missed calls! Allison had tried several times and then had finally called Grandma and Grandpa to try and track us down. They called a bunch of times over the course of 20 minutes. Finally got in touch with Allison and

there was a potential donor and it was time to get to the hospital.

Mom and Dad had already made a list of everything that needed to be done to leave the house quickly and had a bag packed to go. Poor little guy got pulled out of bed and thrown in the truck not knowing what was going on. He stayed quiet and awake the entire drive while dad sped off to the hospital. Somehow they made by midnight which meant they had technically arrived within an hour of the first missed call.

Al went straight up to the CICU where he was expected but no one had heard yet about the status of the transplant. His nurse drew some blood to run some labs. He got weighed in - 6.7 kg, took his first dose of Neoral - the main immune suppressant that he'll take for the rest of his life and got all set for surgery - assuming it would go through.

His first dose of the Neoral was not fun. Because the liquid form of the med is so sticky and oily, he can't have his binky for 10 minutes afterwards. He was super unhappy about that and screamed and screamed and just about woke up all the other babies on the unit!

Finally he chilled out and got some rest and so mom and dad decided to get some rest too.

Then at about 4 am, Dr. Goldberg came in and woke up mom and dad. He said: I'm going to fly to the place where the heart is to pick it up. From what I've heard - its a good heart. Mom and dad signed consent and he was off on his way. (Because organ donation is anonymous, the recipient's family is not to be told any identifying information about the donor including their location. In this case it was in some city that is about 1 hour 45 minutes by airplane) The surgery was planned to start around 8 am.

When he woke up, Alan got some last snuggles with mom and dad.

A little while after 8, he went off to the OR to start the surgery. The surgeon for this procedure, Dr. Max explained that it would be a little more complicated than a normal transplant. Because of all of his previous procedures, Al's pulmonary arteries were very narrow and these would have to be fixed as well.

Mom and dad went off to the waiting room again to wait with Al's grandma's and grandpa's. This time Allison and Carrie were bringing the updates. The surgery would normally be about 6 hours, but in usual fashion for Al, it took a lot longer than that - pretty much all day.

Mom and dad got word that the chest was open and that the scar tissue was being cut through. Once the doctors got word that the new heart had landed in Denver, he was put on the heart/ lung bypass machine. The next step was to work on the pulmonary arteries. Finally, Dr. Goldberg came back to the hospital, with the cooler. He said: I saw the heart. Its beautiful. And he dragged it off into the OR. The surgery continued for hours. The surgeon used part of the donor's pulmonary arteries and grafted them onto Al's. This required a cold arrest process which means that the body is cooled enough that circulation stops all together. It can only be done for about 15 minutes at a time. This had to be done three times while the pulmonary artery was repaired. This is very dangerous as circulation to the brain and the vital organs is completely stopped but it was necessary to repair properly.

Because the old heart was going to research, it had to be dissected immediately in the OR. So, Allison offered to take a camera back and get a photo of the old heart. Ready...

Here is the old one:

The old heart was a mess - misshapen and swollen and covered in scar tissue. Its pretty unbelievable that the old heart had made it as long as it had. This made it very clear that the transplant was the right choice.

Eventually, the heart was in. Slowly he came off the bypass machine and was pumping on his own. But, after all that he had been through during the surgery, bleeding was bad. It took hours to try and soak up all the excess blood in the chest. Finally the surgeon decided to leave the chest open and leave gauze in the chest cavity to stop the bleeding and then wait a few days to close up.

Finally right about 12 hours after going into surgery, mom and dad got to see their baby. He was a mess after the surgery but all things considered was doing pretty well. The gloves there are ice packs to get his temperature down.

Scary Night

Mom and dad ate some dinner, and saw their Al to say goodnight. He was still very sedated. He needed a little bit of pacemaker help which isn't unusual. Mom and dad kissed him goodnight and went down one level to their sleep room at the hospital. Right as they were getting their bed made to go to sleep, they got a call from the assistant in the CICU that they should come back. Mom and dad got on the elevator and sprinted to the unit.

Everyone was surrounding the bed. Al's blood pressure suddenly had dropped dramatically and he went into a spell of cardiac arrest. A Code Blue was called and the crash cart pulled over and he received 30 seconds of CPR. As we were arriving, the patch covering his open chest was opened to go in and check out the heart. What they discovered - the heart had swollen from all the trauma and was being compressed by the gauze that had been left in. After removing it, his numbers got much better and the bleeding had mostly stopped. It was a huge relief.

For the next several hours, Al stayed teetering on the edge as to whether or not his heart new heart would be able to make it on his own. The surgeon was trying to decide whether to put him on ECMO. It is a machine basically like a heart/ lung bypass used in surgery, but it can be used for a longer period of time in the ICU. Al's heart would start doing worse and his pressure readings would look bad and then as soon as the ECMO was getting set up, he'd get better and the doctor would hold off. Al had a huge crew of people hovering in his room all night. Dr. Max, the surgeon stayed in the room all night focused on the monitor. Often Al would need a blood transfusion. Instead of delivering it by a pump like usual, his surgeon sat by the bed and pushed the blood in by hand with a syringe to try to add the blood at the exact speed necessary. Al kept doing this back and forth all night long. Finally first thing in the morning, the doctors did decide he needed the ECMO machine and got him put on.

The ECMO machine sat on this metal cart. Al had 2 metal tubes going into his chest. His blood would leave him and go into the machine. An oxygenator would add oxygen and the blood would be warmed and then pumped back in, basically working as an artificial heart and an artificial lung so his heart could have a break. He was still on the ventilator at a low rate just to give the lungs exercise while they weren't needed.

Being on this machine is very risky - especially the longer spent on it. Because the blood goes through this machine, it needs to be thinned with Heparin. This creates a significant bleeding risk, especially to the head. There was about a 40% chance of head bleeding which could cause permanent brain damage.

After exactly 2 days, doctors decided to try taking him off and to hope for the best. Fortunately he did okay and after the days of rest, his heart was ready to pick up the slack and start pumping. The right ventricle was still weak for a few days which is fairly normal but he did okay. The next day, his chest was stapled shut.

Slowly all the usual stuff came off as he got more stable. Chest tubes came out. Lines came out as he was on less IV drugs.

The breathing tube came out.
His breathing still wasn't great and he had to go on the Cpap machine for awhile. It was very uncomfortable.

He got off the drugs and started to become more awake. But he was very uncomfortable. Spent about 48 hours with non-stop insomnia and got the shakes. He was having withdrawal from all the morphine he had been on. He started methadone and ativan which helped him to relax and feel much better. He switched from the Cpap to a high flow nasal cannula.

And eventually got stable enough to move back upstairs from the ICU. One of the first new things to try - applesauce.

Happy Birthday

While on the CPCU on the 9th floor, Al turned one! His CA Kalie got him an awesome present. A helicopter. He loved it and played with it for hours. Its a fun toy that makes loud noises.

And now that he was a big boy and finally able to have a normal fat diet (though still no dairy), Grandma Ja made him a special treat. Chocolate birthday pudding! (made to nondairy specifications)

He stayed for a little while longer, getting more stable and weaned to a lower dose of oxygen and to lower doses of meds.

Finally left the hospital after about 2 1/2 weeks which isn't long for his standards. Still wasn't 100% but enough personality shinning through to know that he was the same Al.

He went home on oxygen, ng tube for feeding, and lots and lots of meds.

Summertime

2008-06-12T10:09:00.000-07:00

Hurry up.. and wait

Al quickly got readjusted to being back home. He got reacquainted with all his toys. He was sent home on oxygen, milernone continuously, feeding tube for the yucky formula, and of course lots of oral meds as usual.

The milernone meant being attached to a very stylish fanny pack 24/7. The line went into his thigh and ran into an IV pump that was kept in the fanny pack. The medicine came in small bags that had to be switched every 48 hours. A home care nurse came over every week to change the dressing on the line and keep it clean. Having a line right in his thigh was kinda annoying for such an active wiggly little boy.

Although not quite as cool as all the nurse friends, Al got used to being with just mom and dad instead. Dad quit his job in order to spend all day with Al while mommy worked - usually at home.

Worked hard on eating again. With getting most of his nutrition from the yucky formula by tube, Al just worked on his spoon feeding. He learned how to eat all by himself. He ate lots of yummy stuff to keep up his skills and remember that eating is fun!!!

Al would need to stay on the yucky formula until his transplant.

One of the favorite foods.. blueberries. Mom made a concoction in the blender from fresh blueberries and bananas. He gobbled them all up and had lots of fun getting to make a mess.

While he was gone, mom and dad had gotten Al a new saucer toy. At first his legs were a little too short but he grew into it and loved all the toys on it. Al got to meet friend Sarah and hang out at the pool. Unfortunately he didn't get to go swimming then because of his line but he had fun sitting by the pool snuggling with everyone.

Bath time was fun. It had to be a sponge bath because of the broviac line. Tried out the G diapers for awhile while mom was contemplating whether to make the jump to try switching to cloth.

The Move

So just as he was getting settled.. mom and dad moved. But it was a nice change. Al finally got a room of his very own and a bathroom. Not that he used either. He continued to sleep in mom and dad's room anyhow.

Al got used to the new comfty house. Everyone was on edge all the time for the call to come in for the transplant.

Any time, a call could come in that there was a donor and he'd have to be at the hospital within an hour to be ready. The estimated wait time was about 3 months. There were lots of kids at the hospital at that time waiting.

Al had fun spending quality time with daddy!

Diapers, diapers

Mom finally decided on cloth diapers. After much research and trying out some sample packs, she decided on the Bum Genius 3.0. They are awesome pocket diapers that hold up well and are easy to wash and affordable and come in lots of cute colors.

Al's favorite toy to chew on - the oxygen cannula. If you put it in your mouth just right, you can make some fun sounds and blow some sweet bubbles. He was constantly chewing on it and mom and dad kept having to readjust it.

And, one of the favorite books - Water Water Everywhere. Its a baby Einstein book about all the different forms of water.

Throughout the summer, Al saw his OT Ann and his PT Sarita to help him with regaining his strength. One day, Ann brought a cup and some blocks. He had lots of fun with the blocks and shaking them in the cup and putting them in and taking them out.

And he got a little stronger - learning how to sit up almost by himself. He made mom and dad and everyone else very proud.

Al got big enough to start sitting in his bumbo chair to play!

And he decided to start pursuing an art career.

Things started looking up. Al had a pretty fun summer, for having to be cooped up a lot and tied down with a bunch of cords. As September came around, it got a little more tense waiting for the day to come when the transplant would finally happen.

We're back

2008-03-27T13:18:00.000-07:00

Readmitted

Two weeks after being out, Al was back in the hospital to try to control his effusions. He got another chest tube put in to drain the fluid. And a new course of action was decided. His feeding was stopped entirely and he was put on an initial 10 days of TPN only. (Nutrition that is delivered by IV) This would stop the fat leakage because there would be absolutely no fat in the diet. Al was able to maintain some of his normal activity. He brought his awesome big purple ball to the hospital to play with.

And he kept up his personality. Nurses fell in love with Al and his sweet smile. Especially as his stay got longer and longer.

So this continued for awhile. After the 10 days without feeding, his tube drainage had stopped and so he restarted feeding his special formula.. and the fluid re accumulated again. Al went to the cath lab again to check everything out. He had a few issues. His pulmonary arteries were narrowing and he had developed some col laterals to be coiled off. A collateral is a new passage for blood flow that the body creates itself. These are bad because they are inefficient an pull circulation away from where it is supposed to go. These issues were fixed but still did not make a big difference clinically.

More Surgery
So, the next step, Al went in for a Pleurodesis surgery. Its an extremely painful procedure but not nearly as complicated as the open heart operations. A side chest incision is made. Then the outer part of the lung is basically sanded down with a Brillo pad to make it rough and scarred. The goal is that this scarred tissue will adhere to the inside of the chest wall and stick together, eliminating the pleural space where fluid accumulates.

Here he is getting ready with the surgery with mom and dad. He was sick but in pretty good spirits.

And, this is Al after the surgery. He went back to the CICU post-op to recover for a day or two. But he was a mess. He was in lots and lots of pain and kept needing more and more drugs to control it. His blood pressure dropped low enough to need dopamine - a drug to increase the blood pressure. His breathing got worse and worse.
One morning his breathing was terrible. He was working and working to get enough air in and was super unhappy. His nurse came in for her shift after mom had spent the night and she said "He looks like crap. He needs a breathing tube."
But the doctors didn't agree. They thought he should keep on trying on his own until it was absolutely necessary. Poor little man worked himself hard all day. And his awesome nurse M kept on top of everything and fought hard for little Al until he finally got intubated. It was a relief that he finally got to take a break from working so hard to breath.

He got swabbed and turned out to have an infection - probably caused by a line contamination in his PICC line. (It is like an IV that is central - which means it goes in all the way to the major arteries. He got the line in to receive his TPN nutrition). He also continued to accumulate fluid. Instead of one big mass of fluid on his right side, now that he had the pleurodesis to make his chest stick, he had little pockets of fluid in the areas that had not stuck. And his left side that had always been clear before developed an effusion as well, so he had to get new chest drains put into both sides.
The few days that Al was supposed to spend in the CICU recovering from minor surgery turned into weeks. Eventually he started to improve a little after having his chest drained and got off the breathing tube and switched to a C pap.

During this time in the CICU, Al had a very cool next door neighbor, we'll call him C. C had been in the hospital his whole life, born with HLHS, a condition very similar to Al's and hadn't been able to recover from his first surgery. At that time, C was about 3 or 4 months - a very cute baby. He has the best mommy, H who takes such good care of him. Always dresses him up in nice outfits.

Because of his continued difficulty, Al was sent back to another Heart Cath. This time things did not look so good. He had developed even more col laterals. In order to fix this, about 48 small metal coils had to be used to close this vessel off! His chest will now always be coated in platinum that can be seen from an x-ray. But the most alarming fact, his pulmonary artery pressure, a number that should be around 7 for a healthy person, can be allowed to be in the low teens for someone with his condition, was 22 which is very high. The doctor said that if he continued that way, he would likely not be a candidate for the Fontan, which is the third surgery Al should have had around the age of 3 or 4 to complete his circulation.

Continuing to play musical room chairs, Al stabilized enough to move again upstairs to the CPCU. His friends there on the 9th floor were so excited to see him again!

Feeling a little better, Al got to start eating again. Because of his diet restrictions, he was only allowed to eat nonfat foods. His favorites were peas, bananas, and pears.

What Next??

With no clear path toward improvement, Al's doctors decided they needed to figure out what to do with him. They brought his case to the weekly cardiology meeting where all the cardiologists in the hospital got together to review all of his history. They decided that his only viable option for the long-term would be transplant.

The next day, there was a care conference for everyone involved to discuss Al's future. Mom and Dad were there, along with Gma Ja and Gpa G, Dr. P, Dr. J, and M, the social worker. Basically what it came down to was that no surgeon would be willing to do the 3rd stage of surgery for Al - it was too much of a risk where even if he someone magically recovered, he would likely have the same problems next time around.
The only real chance to have a normal life would be to try a heart transplant. Over the next couple weeks, everything came into place to list him, which meant he had to be ready any moment to go into surgery. Al met A, his awesome coordinator who has done a great job taking care of him. After finally deciding on the transplant, the goal was to work at getting home.

He got to have some fun while at the hospital. OT and PT came all the time to play. Got tons of toys from home and from way too many presents. One of the favorite things - mouth swabs. They are pink sponges on a stick used to provide oral care. They taste good and he loved to suck and chew on them for hours.
Mom and Dad were amazed one day to see the pulse ox machine show a saturation of 100%!!!!

To try and get more stable, Al went on even higher doses of the diuretics. He also started taking a drug called sildenafil (viagra) to dilate his pulmonary arteries and hopefully get more blood flow to the lungs.

One Saturday afternoon.. there was a carnival right in the lobby of the Children's hospital. Al went to check it out. While there weren't many games for a kid his age.. he did "win" this blue ball with Tigger on it. A little easier to play with than the giant purple ball.

As he started to feel better, Al got to go on walks in his wagon. He would go around the hospital looking at fish, watching the giant "ball" machine and all over the place outside getting some rays.

Alan also started a new drug, Milernone. It is an IV drug given continuously for heart support. He would be continuing this drip if/ when he went home.

Eventually Al's PICC line went bad and so he went in for a very small surgery and got a Broviac line put into his thigh. Its a type of line (like an IV) thats a little more stable than a PICC line.

It was a chaotic time. Dad was working at a boring job. Mom was working but could do most of it around the hospital on a laptop. Whenever mom and dad were gone the nurses and CA's and unit secretaries loved getting a turn to go play and snuggle with Al.
Grandma and Grandpa also visited all the time and sometimes stayed for sleepovers.

One of Al's friend's mother from the UK sent a present one day. It was a book, Going On a Bear Hunt. When this friend was a baby, he would always read the book when he was in the hospital having his heart worked on. He's a big boy now, but his mommy thought of us and wanted Al to get to read it with his parents. It quickly became one of the favorite books.

Al started to get better and better to where there was finally hope that he might actually leave. He had spent so much time at the hospital that mom and dad wondered if he would even remember being home.
Al's friend C finally got a little better and got to move to the NICU where he could spend more time being a baby and be a little more comfortable.

Well after 12 long weeks.. one day, Al decided he'd had enough of this place. He got dressed, packed up his bags... and gave hugs to all his friends.

And he said.. "I'm outta here"

He went home and lounged on his sweet couch. While he was gone, mom and dad had gotten some new couches. They had gotten a special little couch just his size.

The verdict "Perfect! I think I can take up this whole thing."

Now it was time to wait wait wait.

2 uneventful weeks

2008-03-24T09:54:00.000-07:00

Back at home Al got some time to play. His oxygen didn't get to much in the way. He started drinking his bottle of yucky formula flavored with sugar and vanilla.

He played with his toys.

And helped dad on the computer.

He was monitored closely with appointments at the cardiologist. He needed to go up on even more diuretics. Then there was one week when he started getting worse and worse. One morning he woke up feeling terrible. He was exhausted and huffing and puffing just to breath. First he went to see his favorite PA Sarah at the pedi's office. She could tell he was not in good shape and sent him to go to the ER to get an x-ray.

Alan went to the Parker ER because it was staffed by children's but smaller and closer than the main children's hospital. His x-ray there.. was terrible. It was so covered in fluid that Al got a ride in an ambulance. Some of the same crew from Flights for Life that had transported him the night he was born took him to the main Children's hospital that day, where he was admitted...

Open Heart Surgery - Take 2

2008-03-13T09:00:00.000-07:00

Surgery Day
The time finally came in March for Al to go in for his second surgery - the Glenn procedure. In this procedure, the Superior Vena Cava (the vein that brings back the unoxygenated blood from the head and top part of the body to the right side of the heart) gets cut off from the heart and grafted to the Pulmonary Artery (which brings blood to the lungs) This allows part of the blood flow to be diverted away from the right side of the heart and go directly to the lungs without being pumped. Al got up early to try his last bit of food allowed before surgery. Unfortunately he wasn't very interested at 3 am in drinking any milk or at 5 am in Pedialyte, which was his last chance to get anything in his tummy. He went to the hospital to get prepped to go in.

After Al went back, Mom, Dad, and both Gmas and Gpas went to the waiting area. Esther was bringing them their updates again. Luckily this surgery went much smoother than the other ones. Finally Mom and Dad were able to go back into the CICU to see Al.

He looked so much better than he had the first surgery. His chest was able to be closed in the OR instead of days later which sped up the recovery. He still had chest tubes and vent and lots of lines, which is pretty standard with any heart surgery.

On his forehead after surgery was a BIS monitor. Al decided to take part in a research study after this procedure. The BIS monitor is a tool used frequently during surgery to monitor level of sedation to determine adequate anesthesia levels.

The study involved trying to use this tool during recovery time in the ICU to better judge sedation and keep the patients more comfortable while recovering from heart surgery. Al was also much less swollen after the surgery than he was his first time around.

Feeding Time

This recovery went much more smoothly. The day after Al was already given an opportunity to try eating. He started with Pedialyte which he gulped down in no time. Next step he got to drink some breast milk from his bottle. He did great with his first bottle.

One risk of the procedure - Chylothorax. The thoracic duct, which is part of the Lymphatic system dumps right into the area where the surgery was done. What can happen sometimes is that that duct leaks fluid - mostly dietary fat which spills out into the pleural area (the space outside the lung). One of Al's chest tubes had been placed in his right pleural space. After feeding, we'd closely monitor changes in the fluid coming out of that one in particular. Well.. a few hours after Al's first feeding..

THIS is what happened.

You can see the fat floating at the top of the drain. All of the fat that he had just taken in from the milk started spilling out into the chest tube.

The usual treatment for this is a special diet for about 6 weeks where the infant drinks a special formula that only contains a special type of fat. Usually these babies drink a formula called Portagen that tastes a little bad. Since Al was allergic to milk protein though - he couldn't have this one and so the nutritionists and doctors had to work very hard to track down a formula concoction for Al to drink. A nutritionist finally found a formula without a name - just a number 3232 A. Its a specialized formula that is actually made for a different condition - for patients with carb restrictions. Its fat composition met Al's requirements - the fat is made the same way as the fat in portagen. But this formula was carb- free so it had to be mixed with Polycose to boost the carbohydrates.

Recovery

Al tried very hard to drink this stuff down, but he just couldn't drink much of it and who could blame him. So, he went back to the NG tube with the goal of trying to flavor it up and get him to drink more of it by mouth eventually. This was supposed to be a short term diet - about 6 weeks before he could switch back to a normal diet.

Well other than the chylothorax issue, Alan recovered very quickly. He moved upstairs to the CPCU within a couple days of surgery.

The drainage from his chest tube stopped and he got it removed. He was getting daily chest x-rays to look for accumulation of fluid that would go up and down each day. He was put on a significant dose of Lasix, a diuretic drug, which helped him to pee the fluid out and keep his chest dry.

Al was overall looking great. His oxygen saturations were amazing. Previously he was usually around 70%. Now he was well into the mid-high 80's%. His skin was much pinker than it had ever been before. Everything looked encouraging besides having to have the special formula for 6 weeks.

Eight days after surgery, his x-ray looked dry and clinically he was feeling great and so Al was discharged to go home!

That very day he had gotten a gift from his friends on the MM website - a fuzzy duck and a balloon. He loved it. That day Al was discharged early in the morning. He did have to go home on oxygen and would probably stay on it for a few months.

Al went home and crashed on his couch - glad to be out of the hospital!

Kept on growing: 4-6 Months

2008-02-01T16:01:00.000-08:00

Al stayed healthy his first winter. He would stay home with mom while she worked. Al started to have more and more fun playing. One of his favorite toys was referred to as his "loud toy" aka "Happy Making Friends" toy. Its a toy gym with hanging toys that sings a song and moves - a very loud song.

In late January, Al went back to the cath lab one day to check his heart out. It was necessary to check everything out and make sure he was ready for another surgery.

Al started eating solid foods. His favorite first foods were avacados and peas.

Alan got stronger, starting to push himself up and grab at his toys.

First Months

2007-11-14T15:39:00.000-08:00

A quickly got used to his new home. His first obstacle was to get some weight on. He'd go several times a week on a walk to the pediatrician office and get weighed.

He learned to make facial expressions and look at people.

And learned how to speak his mind.

And loved sleeping in his cradle.

A discovered new fun things to play with like pens and rings and his hands.
And celebrated his very first Christmas.

First time home!

2007-10-22T16:23:00.000-07:00

The day finally came and Alan got to be discharged to see his home for the very first time. It was a long day. The hospital was new and didn't have all the kinks worked out as far as discharge procedure and prescriptions. Finally got out of there though. Alan tried out his carseat, got dressed up and loaded up to go home. His nice grandma went and picked up his prescriptions during rush hour so he could go straight home.

He had a good drive home. Of course there was traffic but he hung out in his carseat and enjoyed all the new sights busting out of the hospital.

Finally safe at home, things were crazy for awhile. Alan worked very hard trying to grow. Every three hours he took some food in - first by breast or bottle and then from his ng tube. He got it out pretty quickly but still visited the pediatrician all the time to have his weight checked to try to grow him a little bigger. He got comfortable finally being at home. He slept in a cradle in mom and dad's bedroom. Kept mom company during the remainder of her maternity leave.

Recovery

2007-10-09T16:04:00.000-07:00

Waiting for Alan to get better felt like a slow and agonizing process. Little did we know at the time - a month long hospitalization isn't so bad.

Alan got his chest closed up with staples.

Then started to open his eyes.

Got extubated and switched from ventillator to Cpap machine. One of our favorite nurses, Sarah, made a cut-out binky so Alan could keep it in his mouth even with the Cpap.

And of course learned to make spit bubbles. A very important skill.

And finally - started breathing on his own and getting fed mommy's milk.

And got snuggles from dad.

And finally got to move up to some sweeter digs. Left the CICU and got a penthouse 9th floor set up in the CPCU.

Sweet crib. This is Alan getting one of his feeds. He went home on about half feeding by mouth, and half by tube but caught on pretty quick to where he didn't need the ng tube.

Surgery Day

2007-10-02T15:46:00.000-07:00

Alan's first surgery was a very long day. We hugged him and said goodbye early early in the morning and watched him wheel back to the OR which is luckily only feet away from the CICU. We spent our time in the waiting room with the grandmas and grandpas. The plan was to complete the procedure without having to go on the bypass machine. We were getting hourly updates from Esther, the surgery liason. We got news that he was done and that his chest was being closed up.

Then.. next thing that happened, Esther came back out and pulled us to a private waiting room to talk with us. Apparently right as he was being closed up, he started de-sating and all his numbers went crazy and they didn't know what was going on but had to put him on heart-lung bypass and go back in. We were terrified. The next update was that Dr. Campbell, the surgeon, had found that the shunt had clotted. He had to go in and re-do the shunt. It turned into a very long day. Finally he was done and able to be taken off the heart-lung machine but had to have his chest left open for a few days because he was too swollen to be stitched back up. Finally at the end of the day we got to see Alan.

He was in rough shape that night and for the next several days. He was on the ventilator. He had tons of meds going into him - about 22 was what we counted. Three chest drains, which pull out excess blood and fluid. He had a Foley catheter in for urine.

Alan's chest stayed open for several days. The opening was covered with a patch. The cool part was that you could see his heart beating beneath the patch. He was very swollen and puffy. We were warned before seeing Alan post-op that he would be difficult to look at. Honestly though we were pleasantly surprised. It was such a relief after that day just to see him.

Moving day.

2007-09-29T15:30:00.000-07:00

This was the day Alan moved to the new hospital. He was one of the first kids transported that morning. He was the first patient in the CICU!

A Flights crew from Kansas City came out to help with the move. They packed Alan up in an isolette and loaded him up in the ambulance. Unfortunately there were space restrictions and so no one got to go along with him. Mom and Dad followed in the car from the old to the new hospital. It was quite the operation. All the kiddos got brought over one by one in the ambulances that day.

The move went smoothly and Alan got to his new unit safely. The new facility of Children's Hospital is much nicer than the old. Its pretty and clean and spacious and has rooms for the families.

It was cool being the first kid over there.

Alan was pretty cozy in his new bed. He spent his second weekend at the hospital hanging out waiting for his surgery.

First Snuggles

2007-09-25T15:11:00.000-07:00

Kangaroo

One day after going out for a walk, we came back to Alan's bed to a suprise... he was being extibated (getting breathing tube out). This was a perfect opportunity to do some Kangaroo Care (bare skin chest to chest holding that is proven to be medically beneficial to the baby - apparently its what kangaroos do).

It was nice to finally see our handsome little boy's face. Oh and here was when binky first got introduced. He has switched to a slightly different style since but Alan and Binky have been attached every since. It looked so huge when he was that tiny.

First Feeding

Here was Alan's first tastes at the bottle. He had breastfed immediately after birth but hadn't gotten around to any eating during several days of NICU drama and being intubated.

NICU days

2007-09-22T14:16:00.000-07:00

Alan spent his first week in the NICU at Children's being kept stable until a surgical option could be considered. He needed to stay on blood thinners to keep his Ductus Arteriosus open - its a connection between the pulmonary artery and the aorta in the fetus that normally closes up after birth. His first few days he had to stay intubated (with breathing tube in) to control his apnea spells until a proper dose of meds could be reached.

Alan had lots of visitors. Both his grandmas and grandpas were there with him lots. His aunts and uncles all came to see him - Derek and Claire and Luke and Jaime and Lacey and Jacob. and Cousin Cammie and lots of friends - Kristin and Sarah and Rodney and Mary and Henry and Pastor Aram and Pastor Erik and Debbie.

He had lots of great nurses taking care of him but it was a very scary time.

The diagnosis

2007-09-21T14:28:00.000-07:00

Alan's diagnosis was Pulmonary Atresia with intact ventricular septum. Above is a beautiful drawing by Dr. Steve Goldberg who is absolutely the best. Here is a good link to find out more:

http://www.pted.org/?id=pulmonaryatresia1

In Alan's case, his pulmonary valve, which is where blood exits the right side of the heart to go to the lungs was completely blocked in utero. This made his right ventricle, which pumps to the lungs underdeveloped and pretty much useless. To treat him , the plan was a 3 stage surgical process to ultimately leave him with a Fontan circulation, which would leave him with one functioning pumping chamber of his heart.

The first stage, the BT shunt would be performed right away. It is a tube between the subclavian and pulmonary artery It was a temporary measure to give him some circulation to his lungs until he could grow big enough for the next stage.

He went to the heart cath lab his first week to get checked out further and to have his atrial septum opened up. Alan was born right before the hospital moved to their new building so scheduling his surgery was difficult. He didn't get his operation until about 10 days old in the new hospital.

September 20 2007

2007-09-20T13:30:00.000-07:00

This was the day Alan came into our world. The day started at midnight. Jenna woke up to her water breaking and shouted some expicatives. Got up and spent 4 hours watching Ghost Hunters while contractions began and then headed off to the hospital. A pretty uneventful birth process and our 5 pound; 9 1/2 ounce little buddy made his appearance around 1:30 pm.

We spent a couple hours feeding and snuggling during his awake and alert time. Then we let him go off to the nursery for some of his initial care while Jenna slept off some epidural and Rob got some much needed food.

Here's what he looked like fresh out in the world.

And here he is all cozy bundled up!

As the afternoon progressed though Alan started showing some symptoms. His complex CHD (Congenital Heart Defect) was undiagnosed prenatally. It was finally decided that he would be transferred to Children's hospital that night. Very scary for all - Rob accompanied Alan in the ambulence and Jenna stayed behind to be discharged first thing in the morning. At Children's, Alan had a rough go of things the first night and ended up intubated. Cardiology spent a good amount of time that first night and the next day with the ECHO trying to diagnose him and come up with some treatment options.