California to Oregon Part 2

After several hours of sorting out all the necessary items for packing up, we began to load up every suitcase, bag and Tupperware available at our fingertips. Once again, Jessica Engelson, our Stanford Angel appeared with snacks, wine and plenty of energy to help in the process. Jessica has been and continues to be our Stanford Saint. All the cars we filled to the roof, but I was able to fit most of it. We donated a few of the larger items to RMH.

On Saturday, January 29th, we began the first leg of the drive. Thank you Google Maps for navigating us through the endless turns and exits to get on I-5. It was all going smoothly until we arrived in Redding, CA. The radio station shut off and a message from the Emergency Broadcast System began rattling off all these warnings and a tornado was in our area! Looking North, I could see this large anvil shaped cloud that was black and green. Lightning and then a massive down pour started. It was difficult see anything and the winds were making the driving very challenging. Cars were pulled all over the place and I looked over in the southbound traffic to see a full size truck completely flipped over! Yeah, serious stuff. I felt very worried for Sarah because she was driving the Nissan Versa. We pulled over at the first rest stop, I looked over at Sarah and you did not even need to say it. We were done driving for the day! We found a hotel, got baby settled, and poured a tall glass of wine.

Sunday was going to be a long one. 450 miles to Portland. The weather was a mix of rain and snow with a dense fog layer ceiling at 1000 ft. When we got to the Siskiyou Pass, we switched the cars so that Sarah could drive the big car with 4WD. No snow or ice on the road, but the fog was dense making the visibility challenging. Once we got over the pass into Ashland, Oregon, I was so relieved! We took a lunch break and kept heading North.

As we drove closer and closer to Portland, Rachel and I tracked hours and minutes until we arrived home! Pulling up to the house was such a good feeling. Lauren Kelly and her family decorated our front door, thanks Lauren! Unlock door and the heat is off. Yeah, bummer. We so overjoyed to be home, it didn't bring our spirits down. All of were exhausted after 9 hours of driving. We got Steele settled in and fell into bed.

I took Monday off from work to get the house in order with the heat and other loose ends that needed attention. There was a feeling of anxiety and excitement about returning to work on Tuesday. When I arrived at school the next morning, students came to greet me and welcome me back. The staff migrated to me classroom and big hugs were shared along with some tears. If felt so good to be back at my teaching post. The entire day was a blur. I had to return to the teaching routine instead of the hospital routine. My job for the last five months has been centered around a vacuum of space called Lucille Packard Children's Hospital. I was hard for me to switch my brain back in the school setting. The students and staff made that very welcoming for me, which help ease the anxiety of it all. I had a fresh set of faces and names to memorize as well as trying to discover where the student were currently in their studies.

Luckily, it was Spirit Week at GHS, so the distraction was nice. By the end of the week, I felt on-top of grades and putting together a plan for getting students back on track. On Friday, there's a huge assembly where each class (Freshman. Sophomores,....) prepare a video and perform a dance routine based on this years theme, Disney. The staff always performs in this activity as well. I was coerced into the back handspring again. All went well, and not did not fail on the handspring!

Ryleigh spent the week with our wonderful and kind daycare friend, Tracy Hymas. Thank you Tracy! Ryleigh just turned 5, she will start Pre-K on Monday. I cannot believe it has been 5 years already. I am going to enroll  her in Gladstone Kindergarten starting in the fall.

Rachel and Sarah have been caring for Steele this past week. Rachel will return to work in the Spring teaching A&P at night. I will tap in and watch both children while she is at work. There will be no need for putting Steele into care. His care is a full time job, so we want to limit his exposure to germs and viruses as minimal as possible. Steele is doing great at home. His vomiting has decreased, we are introducing blended foods, which he seems to like in small portions. It must be a strange tasting food for the first time and using your mouth and throat to swallow. He has really never had whole food or liquids by mouth, so we are working with Speech and PT for those pieces. He will not be able to practice crawling for about another month until his chest wound heals. We are working on his neck, torso and arm strength everyday according to a routine that was prescribed by OT.

All in all, things are very good! Steele will be delayed a bit on a few of his monthly markers, but we have been told that he will be back on track in a few months & hopefully the "tube" can come out all together. A lot of people have been asking about his heart and duration of how his heart will continue to function. There is no definite answer to this. A transplant is always on the table if his function starts to fail. Luckily we have several sets of eyes on him. OHSU will continue their weekly clinic visits for a couple of months, which are then shared with the Heart Failure team at Stanford. If there were any reason for him to need an emergency surgery or anything red flag, Steele will be transferred back to LPCH immediately. LPCH is now going to handle any surgical interventions. transplant, or the third and final surgery called the "Fontan".

Mr.Steele will continue to show us his needs as time moves on. If successful with heart function, it could be 2-3 years before the last surgery. Most patients with his condition can go into the late 30's or 40's before they need a heart transplant. Our hopes are for this option for two reasons: 1) Hearts his size are rare which can take a while to find a donor. Adults have an easier time finding hearts because the donor pool is so large. We'll just have to watch and wait. Our new normal has many moving pieces, Rachel and I are getting the routine dialed in and we are comfortable with all Steele's care, we just haven't slept in months. Mona is back, thanks to Renee and Andy Enna for caring for her for the entire duration of our leave. Sorry to their son, Noah, who became very attached to her. I promise to visit with her once a week Noah!

I want to send special thanks to Sarah Sanchez for everything she has helped with in getting us home safe and sound. She deserves a homecoming parade for all her efforts. Thanks Sarah, we love you!

Back in Portland & adjusting to our "New Normal" Part 1

Thank You CVICU!

Hi Friends of Team Steele!

All of us made it home to Portland, OR after an arduous drive with two cars and crazy weather. The process of discharge started about a week ago. Steele was held up due to the oxygen issue and his feeding volume. Rachel and I spent day after day negotiating the final discharge plan, which in itself can drive anyone crazy. We both felt that it was very important for us to leave LPCH as a family and transition back to Oregon.

After several discussions with Steele's Medical Team and countless hours of camping out in the hospital, a discharge date was set for last Thursday afternoon. Discharge is always a combination of a hundred different check marks off an endless list of tasks. Rachel and I did not shower or sleep for 5-6 days. I started loosing track of time between the hospital commitments and Ryleighs care. It's a very strange place to reside in, almost homeless in many ways. I would recommend keeping your focus on the end game. Get out of the hospital as soon as possible.

Our sleeping schedule was completely shredded. Communication becomes spotty, like buzzes and clicks. Rachel and I had to write notes down on a white board to make sure that we would remember important details and goals for each day, sleep deprivation taxes your ability to take care of the necessary elements required to stay alive. I set phone alarms as reminders to take breaks to eat, sleep, and stay hydrated.

On Thursday, January 21 2016, late afternoon, Steele was discharged from LPCH and cleared for transition back to Oregon! This was one of the proudest moments in my life. All of us were glowing. We were actually going to go home? Rachel and I were in shock and denial for about 24 hours. All of us walked through each ward where Steele received care from and said our goodbye's. Very emotional and cathartic are the words for that moment.

Wonderful Nursing Staff at LPCH

Rachel had started making arrangements for Sarah to travel out to California and help us with the packing and transportation back to Oregon. In the meantime, I was scrambling efforts to get prescriptions, packing up, and arranging for our travel back north.

We have met a wonderful family that currently resides in Menlo Park. Camillo and Hallie Colorado along with their four beautiful children, have supported us throughout this entire ordeal. We met the Colorado family through the Kirk House Pre-School, which is amazing! The Colorado's have family ties to both Oregon and Washington, so there was an instant chemical bond there. Hallie's Mother's maiden name is Steele. How crazy is that? Wow! Anyway, they were so kind and helpful to allow us to transport all of our gear in Menlo Park back to Oregon in their SUV that was not currently being used. Once again, I am blown away by the generosity and kindness that have led us along this journey. Thank you so very much Camillio and Hallie Colorado, we miss and love you all!

It's getting late and Steele needs his late night medications. I will finish the story in the next couple of days.

Ryleigh turns 5 tomorrow! January 28th.

7 months old and coming home!

7 months old (5 of them in ICU)

Steele was finally captured with all the medications in the CVICU on Thursday. The Fellow and Attending Doctors began the removal of his arterial line and central line by Friday. There was talk of putting in PIV line for access, just in case Steele needed additional rescues or blood draws. Rachel and I advocated against this during rounds because of his history and they agreed! Next step, move out of the CVICU up to 3 West (Transition Floor). Steele was still dealing with another issue with potassium levels. His blood panel indicated that he was low on Potassium, so he was on a huge dose that was being mixed with his food. Potassium is really hard on your gut, almost acid like and burns. Everytime he was getting this dose, he would vomit most of what was in his stomach.

When you are moved to 3 West, you must be present with the patient all the time. Rachel and I quickly came up with a schedule that would allow at least one of us to get sleep every other day. You will loose time and even days when you are on this floor. Rachel volunteered the first shift, Steele was writhing and could not be consoled all night long. I dropped Ryleigh off at school and headed over to the hospital to clock in for my shift. The Charge Nurse had persuaded the Fellow Doctor to a regiment of Tylenol and Motrin for his headaches. After a few hours of this combination, he seemed to be less fussy and was starting to sleep for about an hour before waking up. The headaches continued to persist, but he was getting some relief.

It was my turn to do the zombie shift on Friday. Steele was still agitated and needed constant pushing in is swing to settle him down. At 3 am in the morning, I had to take a break and fell asleep. The night nurses made a mistake in his Atavan dose at 10 pm, I questioned them about it, but they indicated it was correct. I would later find out that the dose was way off, he only got a fraction of his prescribed dose. When I awoke around 5am, they had given him a rescue PRN to balance him out after hours of soothing and getting him settled down. They both apologized when I woke, up, but the damage was already done at that point. 

Rachel came in to relieve me in the morning, I went home and slept for a couple hours and returned to LPCH. While I was gone, a blood panel was taken to check on his potassium and electrolyte levels. Steele's potassium levels were 200 points above the normal range. Side effects from this are irritable behavior, diarrhea, and vomiting. Hummmm....no kidding! It would take a while for his levels to come down, which mean more of the same described above for another day. In the evening, Rachel had enough of this. He was getting dehydrated, loosing weight, and not holding his food down. Luckily we have a brilliant Pediatrician in the family, Dr.Miriam McAtee. It was 11pm EST, Miriam picked up her phone on a Saturday night and gave Rachel a plan to get Steele back on track. It took some convincing with the Fellow Doctor that evening, but he agreed to the plan and wrote the order. Sure enough, Miriam's plan worked! Steele was holding down his food, less fussy, and was finally sleeping in larger chunks of time. Thank you Dr.McAtee!!

Yes, no more headaches and canulet!

After getting a night of rest, it was my turn to do the day shift. Steele was looking good on Sunday. He was holding down his medications, less issues with vomiting, and was sleeping much better. Around noon on Sunday, his oxygen was turned off and he would give room air a trial to see if his SP02 saturation levels could stay above 70. After a couple of hours, the nasal canulet was removed from his face! Steele was free from the tether!! They only thing left was getting him to gain some weight after all the loss of his food over the course of 2-3 days. Steele was moved to a shared room that was much closer to the head nursing desk.

Early Monday morning, Steele's nurse took a break, and the Charge Nurse was watching him. He was slightly desating into the high 60's. This happens after he vomits or is going poop. While Rachel was asleep, the CN came in and threw a nasal canulet around his head and walked away without notifying Rachel. Rachel then gets up to find Steele's bed covered in vomit and he's back on the 02. Needless to say, she was not thrilled about this decision. Once, our assigned nurse came back from break, she took off the canulet and he was just fine on room air.

Ryleigh and I showed up for rounds and we pressed the medical team for a discharge timeline. It looks like Wednesday! The unfortunate piece is that Steele will have to be on oxygen the entire trip. The plan to fly him home quickly fell apart because there is not a portable oxygen device made for infants his size. The airline would not allow the standard tanks aboard for obvious reasons. The only options we are left with are going by train or driving. Rachel chose the first option. We are scrambling to get our travel plans in order. Rachel's Mom, Sarah, is flying into San Jose on Thursday to help assist with getting home. Sarah, Rachel, Ryleigh and Steele will ride the rails up to north to Portland starting on Friday and arriving Saturday evening. I will be packing up the car and try and beat them home. Steele will be on .5 liters of tank 02, which we already have. Each tank lasts about 22 hours at the .5 liter mark, so they will be hauling those bad boys around on the train. 

That's the latest from Palo Alto. The Thwing's are coming home with Mr.Steele!!

Withdrawal and Tinkering Once Again

Finally, the withdrawal is calming down

Hello Friends,

It's been a rough few days since the last post. Steele had a terrible weekend. Monday and Tuesday were better, but not smooth due to withdrawal, access to his vascular lines lines, and the possibility of an infection. The hardest part for him has been the withdrawal issue for several reasons. First, and most important are the changes in staffing at the hospital. Many of the nurses in our unit are "Travelling Nurses", which means that Steele does not get consistency in his care for more than 3 days at a time. So every 3 days, you have to advocate his story for the nutrition and medications. Steele's biggest issue is the volume of fluids his stomach can handle, which is not a high amount at the moment. Couple this issue with headaches, pain, and a heavy duty narcotic withdrawal, it's the perfect storm of mayhem. On top of all this there was a scare of an infection because he had a fever. Blood labs were taken and antibiotics started immediately.

I must say, withdrawal is the hardest part of this experience. There are so many moving parts, it's really tricky to "capture" Steele in his sweet spot. Today, he finally was back to his normal self after 5 days of hell. He was not sleeping, writhing all over the place, and could not stop crying. Yes, we used all the tricks in our toolbox, but you are fighting that withdrawal demon 24 hours each day. It's frustrating for everyone involved. I felt so bad for his nurses, you can see the frustration mounting as they are trying to get him in a comfortable spot. At the end of the day, you feel so defeated that the withdrawal got the better of him. It's very difficult to walk away knowing that this will continue for an uncertain amount of time. At least with surgery, you know there is a beginning and end, withdrawal however is a completely different beast.

The fellow and attending doctors ordered a double lumen central line to his neck because all his IV's were drying up. This would help with getting the meds he needed quickly and would help him get the antibiotics at the same time, but it's another way for an infection to start brewing. After 48 hours, the blood labs were negative and they could stop his antibiotics. Again, the withdrawal began bearing its teeth on Monday and Tuesday. Steele was vomiting, diarrhea, fevers, and uncontrollable writhing every hour for about 1/2 hour. Long days for everyone along with a delay in discharge.

Again, one thing at time, one day at a time, that is the mantra for Mr.Steele.

The plan was to return as a whole family back to Oregon over the 3 day weekend. Not anymore. I was able to get a one week extension on FMLA and will return with Ryleigh regardless on January 23rd. Rachel, Steele, Jessica will fly home sometime after or hopefully on the same day. I'm in denial that we will be leaving California and settling into life back in Portland. The hospital life has become our careers, so switching over to our "New Normal" will be interesting. I am mainly looking forward to having us all home again. Steele will be transferred back to OHSU and begin his clinical appointments again. If all goes as planned, I want to parade him around the PICU at OHSU on his first visit. There will most likely be another surgery before Steele turns 3 due to his stent in the Aortic Arch. Hopefully not in 2016, but time will tell how that will play out for him.

Only a handful of entries left as life moves on in Steele's Journey from Palo Alto. I want to thank everyone that continues to follow his story and your undivided support for my family. Until next time....

Withdrawal, Headaches, PRN's & Setbacks

Friday & Saturday have been rough for Mr.Steele. His medical team rounded on him Friday morning, they were really happy with his progress. The plan was to remove the chest tubes and his central line, then move him upstairs to the floor. Just before 11am, Steele started going into withdrawal from the narcotic regimens that he has been on all week. He was doing very well weaning the IV drips of Versed and Morphine, but still needing PRN's (when needed) to rescue him from getting upset. These rescues are done with Versed and Morphine which calm him down, but increase the demand for needing them for pain management.

Going through these withdrawal episodes are extremely stressful for everyone involved. In addition to withdrawal, Steele is dealing with massive headaches due to his newly formed circulation and surgical pain from his chest being opened up. A lot of moving parts to manage. The withdrawal went on for about 1/2 hour, he received both the PRN's and finally calmed down. During this time one of his chest tubes that allows fluid to drain off your thoracic cavity after surgery had this milky fluid in it. The normal fluids that drain through the tubes are blood and other fluids that gather in the abdomen. This new fluid is called Chylothorax or "Chyle". Chyle contains high amounts of triglycerides (fat) which are essential for his recovery and overall health. The Attending MD was notified right away to come and have a look at what was happening. A sample of the fluid is sent to the lab as confirmation, but it was very obvious to the nursing staff and MD that it was in fact Chyle.

This changed everything. This first thing is to take him off breast milk and move to a low fat formula with a high caloric volume. It may seem counter intuitive, but the thinking is minimize the amount of fat and let the lymph fluid from the thoracic duct repair itself for up to 6 weeks. As you can imagine, Rachel and I were upset about this plan. The breast milk has antibodies to fight off infections, and provide essential nutrients for his growth. Steele does not respond well to sudden changes, his history has proved it. Rachel discussed other options with the Fellow MD, one of which included going back to breast milk if he was not handling the new nutrition. Additionally, his chest tubes and central line would not be removed. Pretty major setback, but his overall heart function was doing just fine.

Steele had an extremely rough Friday night, his night nurse kept giving him rescue PRN's of morphine and versed, but he burns through those very quickly, in about 1 hour. He was vomiting from the sudden change in nutrition and his feeds were turned down from 40 ml/hr to 5ml/hr. So, he was getting stacked with narcotics, food was not staying down, and he was up all night. Rachel arrived at 6:30am to discover that Steele was a train wreck. His fluid levels were really low, and we know that his vital signs are much better when he is fluid positive. He was starving, had headaches, and going through withdrawal. The plan was not working for him.

Rachel had a long discussion with the hospitalist about changing his feeds back to breast milk.  Steele was crying and writihing in pain most of the day today (Saturday), and after many PRNs of morphine, versed, and ativan, there was still no relief.  The team also gave him medications for gas, motrin for headaches, increased doses of ativan and morphine, but to no avail.  After exhausting all other options, the Attending MD decided to start a new drip, precedex.  Precedex is sedative that is often used in combinations with other sedatives and does not interfere with respiration.  Steele was on a precedex drip long ago when he was very sick, and withdrawal from the precedex was a nightmare.  Rachel reminded the attending about the problems Steele had withdrawing from the precedex, but seeing as that was the only option left, it would be added to the medical regime anyway.  The central line would need to stay in because of the new drip, and chest tubes will stay in because if the Chyle continues to drain, there will have to be another intervention. This means we are still not able to hold Steele, which is unfortunate, because holding him is usually a very helpful tool for calming and soothing him.

Rachel deserves all the credit for his care and advocacy these last two days, I'm so thankful that she has the working knowledge to effectively communicate strategies with the medical forces in the CVICU. All the tinkering with his medications, nutrition and pain management do not work well with Mr.Steele.

This also means our transition out of the hospital will be delayed for an undetermined amount of time. Please send Mr.Steele your positive thoughts and prayers. Thank you all for the kind messages and continued support.

Post Glenn (Steele's Second Surgery) Sucesss!

Yes, the bears are back! 

Tuesday was a test of valor for Mr.Steele and his parents. We arrived at the Ford Family Surgery Center at LPCH at 6am, checked him in, and Rachel walked him into the OR to prep him for his anesthesia. I waited with Ryleigh in the patient waiting room until Rachel returned to meet us. At the reception desk, you are assigned a number which is attached to the patients name and updates about current patient progress. This is posted on a large monitor in the waiting room. In addition to the monitor status, you are assigned a "Surgical Navigator". The navigator has your cell phone number and will call you with updates every two hours or so with information that the OR has about the surgical progress. The waiting room is a terrible place to hang out. Everyone is nervous and the hospital chooses these unavoidable televisions to watch. We notified the front desk that we would be on the 3rd floor of the hospital if they needed to reach us. The 3rd floor is quiet, has lots of natural light and comfortable furniture, a much more tolerable place to wait in purgatory.

We visited briefly with the resident Chaplin, cited a very thoughtful prayer for Steele, and everyone that is involved with this day. This did provide some relief from the stress that we were under. Surgery day has this strange feeling for a parent. I am not in the OR with the tools, but I have these visual pictures like a film reel going through my mind of what it looks like, which I'm sure is not at all what is going on.  All the same, you feel so isolated and removed from your child even though they are so close in proximity. One of the skills that helps me loosen the knot of anxiety through all of this is the background knowledge of what Steele has been through. He has survived the first open heart surgery and he made a miraculous recovery in the CVICU, so his mind and body are tough as hell. There are low moments throughout the day and when that phone rings for the updates, it makes my hands tremble.

The important thing to remember that day is take care of yourself. Keep a schedule for breakfast, lunch, etc...and drink lots of fluids. Bring something to distract you from looking at the clock. Thank goodness for Netflix. Take breaks to walk around and go outside to breathe. I would also recommend checking in with your significant other or partner that may be there with you that day. If possible, do not go alone. If you decide to go alone, try and find someone at the hospital that you can check in with. Life Specialist, Social Worker, Grounds Keeper?? Someone to keep the pace of your day going strong.

Around 12:30 pm, we got the final phone call that Dr.Maeda would meet us outside of the CVICU to discuss Steele's morning and how the surgery went. We sat out in the waiting area as they wheeled him into the CVICU, but we could not go in just yet. It was a good feeling to know that we could see him at least, but then the anxiety kicks back in. After about 15 minutes Dr.Maeda came out and visited with us. He was happy with the final results and all the work that was scheduled was accomplished. Steele has the Glenn done and a patch in part of his Pulmonary Artery that will allow more blood flow to his lungs. Shortly after his visit, the Anesthesiologist came out to check in. His words were "Smooth Sailing" & "Steele was on good behavior". The "good behavior" piece means that he did not have any adverse effects to the sedation or pain management, there were no additional interventions needed. Good news overall!

We then entered the CVICU and found our baby Steele. He was heavily sedated of course, but his skin tone and numbers looked very good! Again he is hooked up to about 20 machines providing the necessary medications and monitoring along with the abdomen drain tubes, but we have been here before, so it was not as bad of a shock as the first time around.

Dr. Maeda, his surgeon, has visited a couple of times and said that Steele is not out of the woods yet, but he seems to be adjusting to the new circulation and will be thoughtfully and very closely monitored over these ensuing post-operative recovery days. He has still got several meds going in through a central catheter that need to be weaned/turned off before the catheter can be removed and we can hold him again, BUT he looks good and is even giving us a few smiles here and there. Hopefully, we can get him off the oxygen before discharge, as that will make the trip home and our overall mobility much easier, but Steele will let us know what he needs and we will trust that. Steele will certainly go home on methadone and ativan, and it will be a big day when that is finally weaned. Once again, Steele has to figure out his new plumbing and fight to keep everything in order. His recovery could take up to two weeks and if all goes well, we pack up and head North to Portland.

Reflecting and Looking Onward

Hello Friends of Team Steele. Welcome to 2016! We were not sad to say goodbye to 2015. I know many families, friends and relationships had to endure many hardships this past year, so año adiós! When we learned about Steele's heart defect almost a year ago (1/26/15), we had no idea how this event would reshape our lives and re-examine our moral inventory. I can only speak for myself on this subject as a parent, you feel an obligation to do everything in your power to get your child home and let them live the life they were given.

This philosophy has a price however, your mental faculties, physical stamina, and your cadence will change forever. Rachel had to leave her teaching position for an unknown amount of time, I took a 12 week leave of absence, we moved twice in California, Ryleigh attended four different pre-schools, and countless hours with medical professionals. All of this rattled my body and mind to the core. There are no easy days, which means you live in the day only. It's a vacuum with no clocks or has the ability to shut itself off. I've climbed high mountains, survived avalanches, and put my body through a grinder, but that pails in comparison to this beast. As I walk around the hospital, you can see a difference between a parent that has just found out their child is sick and has just begun their journey versus a parent that has been through the medical grinder. Again, I can only speak from my experience with both of these faces that I have worn. The fresh faces have this look of overwhelming fear and the second face is calm and collected, but worn down to the bone. We are in the inter stage part of this journey. Tuesday's experience will once again test our families ability to have the strength and courage to pull through this and hopefully come home.

The sliver lining in all of this is how people come together and galvanize a symbol of hope & love for our family. After moving into the Ronald McDonald house in October, I felt really depressed. At first, you hide from all these families that are going through the most difficult situations and their children who endure these treatments, surgeries, procedures and a rigorous schedule of medical appointments. After a week or two, you begin to open up and introduce yourself and your story. This is where the magic of the RMH happens. There is comfort in sharing your experiences with others that have been there or are just starting the journey. We have met some wonderful people and have made life long relationships with a part of life that mostly goes unnoticed by the greater whole. What amazes me as an adult, is how well these kids keep their composure. They are the toughest of the entire lot.

Then there is the support we have received from our friends and families. At first when we were told that we would be moving to California, I struggled for weeks about whether or not to ask for help through a fundraising campaign. I have always been this nomad figure that doesn't ask for help unless it is the last option. A group of close friends in Portland sat me down and explained to me why it will work and reminded me of Steel's goals: "Do everything in your power to make him healthy without any regrets." So far to date, we have over 200 supporters that continue to share Steele's story and are always on that fence to provide our family with help. Thank you all for the donations, artwork, and kind words that are sent nearly everyday.

The last piece of the lining are the faculty, students, and families of Gladstone School District. This past October, the students and staff rallied to raise over $9,000 in support of Baby Steele. You can watch the video here if you have not seen it: https://youtu.be/6Q_ywSHcwRI This part of Steele's Journey has defined what a community is. As a Teacher, this gift was one of the most treasured gifts that our family has ever received in more than monetary means. Gladstone High School is the genuine article of what a healthy community can do to support each other in these challenging times. I think about the strength, advocacy, and honesty the teachers, students and parents are providing to put their best foot forward. Gladstone is a very special place and I am honored to be part of the community. Thank you Gladstone!

Now, Mr.Steele has yet another huge hurdle to overcome. On Tuesday, January 5th, he will go into LPCH for his second open heart surgery, called the Glenn. You may recall when we first arrived at LPCH, he was in real bad shape, I mean the worst possible. We almost lost him. The Pediatric Medical Staff at LPCH have given our family a second chance to meeting Steele's goals for survival. Rachel and I are thrilled that he is able to get the second surgery, it was not even on the table when we first arrived. Steele has the strength to overcome everything that they have thrown at him, so we can only keep that in mind as they wheel him into that Operating Room on Tuesday. As his father, I am still very nervous and anxious about how this will all settle out.

This surgery is going to be challenging for Steele, it will take between 4-6 hours in length and in addition to the Glenn procedure, the surgeon is going to surgically dilate part of his pulmonary artery. Big day for Mr.Steele. Then if all goes well, he'll be back in the CVICU for 1-2 weeks. The back-up plan is to put him on a device that will support his heart and then back on the transplant list. We are all looking for Plan A, but it's nice to know there are back-up options.

Happy New Year to everyone, and as thanks for all your continued support!