Happy Holidays Team Steele--The final countdown has begun

It has been quite a week around Menlo Park. Visits from friends, clinic appointments, getting all those lists to Santa, and trying to rest in between. Whew, what a week. All was accomplished however and we even a had visit from my Sister and family. Thanks for making the effort Robinson's!

Happy Holidays Team Steele

Today was Steele's last clinic appointment before the surgery on January 5th. His weight, height, coloring, and pulses look well enough to move forward. We were finally able to meet his surgeon, Dr.Meada. After a brief visit, he was on his way. There is still great concern around his tricuspid valve and the stent in the aortic arch. The plan is still to leave the stent alone and there will be an additional surgery at some point or wait until the third and final surgery on or before his third birthday. Neurology stopped by to check on this left arm before he goes in on 1/5. His bicep needs a bit of PT, looks like I'll be buying that kettlebell set after all for him. All other neuro looked normal, PT will start again post-surgery.

His final pre-operation appointment will be on January 4th. At this time, there were will be a final Echo cardiogram to take measurements and look at the heart anatomy one last time before surgery. Blood labs will be drawn as well, it is unclear if they will sedate Steele during this appointment. Most likely he will be sedated with a local or oral medication, no intubation or cath lab worries on this visit.

My anxiety is becoming more apparent as we get closer to the 5th. We will have to revisit his post-operation in the CVICU, which will not be easy, but at least I am ready for it this time. The recovery can take 1-2 weeks depending on how well his heart responds to the passive system.

Mr.Steele is 6 months old

Hello Friends,

Another late update from your host. Steele's on a good track and we are getting ready for the holiday treat of full time family care. As an educator, I did not realize how important it is to drop your children at school and have a few hours to take care of yourself. My New Year's Resolution is to NOT lock up my 5 year old daugher in a closet and throw away the key. Is that a good start? Please let me know.

I love Ryleigh more than ever at this point, she has shown resiliance, compassion, and the will to fight for what she wants. For those of you who are not familar with Ryleigh, she is Steele's Big Sister. I"ll admit it has been extremely difficult to put her into the schedule like we have. I certainly dont blame her for the behaviors at this point, but it sure is challenging as a parent to remain calm and collected. Luckily, we have a big family with lots of children who have a longer history than our current situation. Thank you all for your navigation and puzzle soliving skills, I am truly grateful.

A break from the "Tubes"

Mr. Steele had his second clinic appointment yesterday which included a blood lab draw. I will be honest, these lab appointments drive my stress levels through the roof due to his fragile vascular system. Steele has very small veins that look like a corkscrew. To get blood draws is very difficult using the look and stick methods. The best way for him to get a good draw is to use Ultrasound. I am fascinated with this technology. I have explained before that it looks like watching the weather channel for storm depth and cloud structures. A certified "Vascular Access Nurse" or VAN has to be the one sticking Steele during these arduous sessions. The equipment includes a sophisticated probe that touches a region of your arm, leg, or hand and bounces back a black and white 3D image of the veins, fat tissue, and muscle structures on a high resolution monitor.

What you are looking for is the dark areas that almost look like the orange spot on Jupiter, but not in color. The VAN is looking for the darkest hole with as little grey as possible, which means it is a healthy vein. Mark it with a sharpie and insert needle to begin draw. This method works the best for Steele, but it still causes my forehead to crinkle every time you hear his screams. We got through it after an hour of finding the "Secret Vein" and moved on to the clinic for his weekly pediatric cardiology exam. The exam went well, his weight chart is growing into a vertical line again, so he may go down on his caloric intake next week, but for now keep everything including medications on "Auto Pilot".

We had a wonderful time hanging out with our newly found heart family, Camilo and Hallie Colorado. They are so kind to introduce themselves and welcome our family into their home. I am blown away how we find each other in such extreme circumstances with everything that is running around out here in the world. My outlook on how delicate and strong our lives are has begun to unfold in so many ways.

Until next time friends, it's beginning to look a lot like Christmas!

Discharge and Move out of RMH

Steele was put on "NG Surveallance" for 24 hours at LPCH 3 West to make sure he could tolerate the naso-gastric tube, and discharged for the second time on Monday, December 7th. Less stress this time with the discharge process and we headed back to RMH for the evening. This discharge felt right after the whole trauma with the Emergency Department. For Rachel and I, it was a very good hurdle for all of us to overcome. Unlike the other (deeper) feeding tube he was discharged with a few days ago, Rachel and I are very familiar with how to place the tube if Steele decides to gamble the "rip out" option, the payoff is not worth it Steele.

Steele is on 10 different medications that are delivered every 3 hours along with a continuous feed cycle in between the medications. Patients with his condition often have reflux problems, which is true with Steele. He will spit up between 4-6 times per day in small amounts. I have talked to several parents at RMH and LPCH whom have children with Steele's condition, and they all agree that this is an issue until the Glenn surgery takes over his physiology. Everyday he is weighed and measured for blood oxygen saturation levels. These are recorded and reported to our new outpatient cardiology clinic nurse practioner (NP) every week. Very similar to OHSU's weekly protocols when he was discharged back in August. We have not been given daily goals or loss danger zones, but we are familiar with both sets and when to take measures if his diet and medications are not going well.

Rachel and I decided that the 150 sq/ft at RMH was just a smudge shy of the adequate space we needed for 2 grown adults, a wild and crazy 4.5 year old, and a nearly 6 month old baby with more gear than an Everest Expedition. We contacted our Kaiser Social Worker who put us in contact with the local housing travel coordinator (TC) that sources outpatients with temporary housing. Rachel and the TC were able to secure us a 2 bedroom 2 bath apartment in Menlo Park, it's about 10 minutes from the hospital.

Tuesday (12/8) Drop Ryleigh off at school and begin the move out of RMH into the Menlo Park Apartment. This was a bitter sweet deal; RMH has so many amenities for each family, but we just could not simply live in that room anymore. RMH does not have a larger family room available at the moment, so the choice was pretty simple, but sad. We still have access to RMH with a daypass, which means we have access to all of its resources minus the sleeping arrangements. Rachel and I got Steele moved in first and settled while she watched him as I became the mover dude for the day. After several suitcases and containers later, it was time to call it a day. I'm not going to lie, it felt pretty damn good to come home to a residence where we had some space to spill out into and enjoy the comforts of our new dwelling. There was still some work to do on Wednesday at RMH, but not much left. Steele looked very stoked to be spending time with his family, so that means we were just as stoked for our new chapter here in CA. Our insurance will cover up to 80% of the rent. Rent = $4K a month. God, I miss PDX. Yes, you heard that right. 4,000 for a 2 brm with 2 bath apartment. Whoa!


Wednesday (12/9) Challenge: Get up with new sleep schedule, prepare medications for Steele, wake-up daughter, get daughter ready for school, eat, breathe, drink coffee. Prepare lunch for daughter, begin delivering medications to Steele, continue work on getting Ryleigh for school and departure, stay calm. Rachel making final decisions on medication delivery for Steele since there are 10. Pause. Collect Ryleigh and check for final inspection for delivery for school. Pause. Check with Rachel before leaving. Sip coffee while Ry gets her business together.

Stay well my friends. Thanks for following and contributing to our journey.

3 West Day 10 & False Positive Discharge

November 30, 2015

We found out that there were several cases of the Norovirus going around 3 West at the end of November. Many patients in the unit were put into isolation rooms, Steele started showing signs of a runny nose and cough. An order was placed to have a swab culture evaluated in the lab which takes 48 hours to complete. This was done on Black Friday of course. Ryleigh and I caught colds most likely from her Pre-School cohorts. We had limited contact with Steele at the hospital. I quarantined myself of Thanksgiving day to the room at RMH, it was the most depressing Thanksgiving ever, but necessary. Steele contracted the cold virus through one of us or some other virus that was going around on the 3rd floor. Hospital infections and viruses are a huge concern at a hospital, so in the future, if anyone is showing signs of being sick, DO NOT GO. I know it seems like common sense, we took every precaution possible with gloves, masks and an arsenal of hospital grade hand sanitizer.

Steele was moved to an isolation room to avoid any additional exposure and wait for the culture results to come back. The isolation room is very comfortable with lots of space and a bed, but it comes with a price. Adult supervision is required at all times. There is a nurse station that is monitoring his vitals, but the nurse also has up to two other patients. Steele was having these choking episodes that required attention to remove the blockage with suction and also calm him down after he could catch his breath. The nurse team can check in and give him the scheduled medications, but it scared Rachel and I to not have someone in the room if he could not come out of a "choke".

December 6, 2015

I had planned a trip back to Portland from 11/30 - 12/4 to make sure the house had not burned down and help my long-term substitute grade finals and prepare for the start of Winter Trimester. Upon my arrival in Portland, I got a phone call from Rachel that Steele's Glenn surgery was scheduled for January 5th. I was hoping it would be before Christmas. The Pediatric Team decided to schedule it after the holidays due to key team members taking vacation time and you always want the "A-Team" around for these complex surgeries. This meant I would have to take additional time off before returning to Portland. Luckily, that will work out and I can stay until the MLK holiday.

Steele was DISCHARGED from 3 West on Friday, December 4th. Thanks so much to Jessica Engelson for helping get Steele and Rachel moved out of the hospital, back to RMH, picking me up at the airport, and picking up Ryleigh from the Colorado Residence. We arrived back at RMH and there was Steele in our room! Our tiny room at RMH is jammed packed with all of his baby gear and 3 other bodies trying to share the space. Let's just say the Thwing's are getting really familiar with one another. We are looking into moving out of RMH and into a small apartment to keep our sanity through the rest of Steele's care here. More on that coming up this week.

On Saturday, December 3, Steele's NJ tube came loose and he ripped it right out. Rachel and I were worried about this because it takes a RN to place it back in the correct location. This is not like the NG tube that we are familiar with and have been trained to place back on our own. Our discharge instructions were very clear if this happens, go to the Emergency Room and call the Pediatric Cardio Attending. We loaded up everyone in the car and headed over to the Emergency Dept. at Stanford.

We were informed that none of the staffing in the Emergency Unit could place a new tube NJ, so we had to wait for a RN from CVICU. Finally, the RN travelled from LPCH to the Stanford side and began the grueling process of tube placement with Steele. These are never fun for a parent, it is an awful experience for everyone. Rachel took Ryleigh out of the room while we worked to get the tube placed. The tube is inserted through his right nostril and is supposed to travel down into your throat, into the stomach and final destination is the small intestine. This took 3 attempts, he kept gagging on the tube which detoured it's route right out of his mouth. Here's a pic of all the tube options:

Steele was "NJ"

After an X-ray for correct placement, we were cleared to go. We all left the ED and as soon as we walked out the last set of doors, he had spit out the tube through his mouth! Turn an about face, right back into the ED for help. He began to choke on the tube since it was bottle necked between his nasal cavity and mouth. We asked for immediate help, and the tube was removed until we could go for round two. Again, a Certified Pediatric RN had to be paged, it was 9:00 pm. Rachel had to go and took Ryleigh. The plan was to have me call her and pick Steele and I up when it was done. This is where the zombie night began.

He was scheduled to receive the bulk of his medications at 8:00 pm, essential heart and pain medications. Rachel and I were worried about getting him off hi schedule, so we asked for a rescue dose of Ativan delivered subcutaneous. That would last for a bit, but I had to wait another hour before the next RN could try the NJ tube experience. This time it took 2 tries to get it right and an X-ray later. I gave him his medications 1.5 hours later than scheduled per advice from the ED Attending. So, at this point he has not had any food for nearly 5 hours, he is fighting withdrawal and has had 5 tubes down his throat.

10:00 pm, talking with ED Nurse for discharge again, I look down at the table and he has ripped out the tube again! The nurse tries to place it back in, but I knew it was not right. They called for an X-ray to make sure it was placed correctly. At this point, I said "Enough". No X-ray, no NJ tube, call the Children's Pediatric Attending and send then down to the ED.

11:00 pm, still no feeds and needs his medications again. Steele and I are situated right on the edge of the "Adult" side of the Emergency Department. I began hearing these loud cries from a man "Stop, Stop!" "Don't, Don't!" All of the sudden there are alarms, security, and medical staff running around to the source of these outbursts. This continued on for another 15-20 minutes with a few more adult word exchanges before our doors were closed and curtains drawn. I never found out what exactly happened but this was not a place that you want to be on a Saturday night waiting for your baby to get help.

11:30 pm, no feeds, no meds. Pediatric Attending shows up. We discussed how Steele is most likely not going to take the NJ option anyomore and we should move to the "NG" option for feeds and meds. This means being admitted back to 3 West in LPCH. Rachel is waiting outside the hospital with Ryleigh in the car. I tell her the disappointing news and I will stay with Steele until we are moved to 3 West.

2:30 am, no feeds, no meds. Steele and I are transported to 3 West. He his immediately given an NG vs. NJ, which goes smooth. Third X-ray given for the evening. Medications are given, luckily I had them in my backpack, so they would not have to be ordered. Rachel still had a supply of milk in their freezer, and the feeds went back on. I hung around until all was settled and complete. Steele finally went to sleep and I snuck out to get some rest at RMH.

3:30 am, RMH house is not open and Rachel is not responding to the phone calls. I turned around and went back to hospital. Grab a pillow and some blankets. Try to sleep, no such luck.

7:00 am, get some breakfast and take the shuttle back to RMH. Back to sleep around 8:30 am.

Yes, a very long day to say the very least. Steele is tolerating the new NG feeding and oral medications. LPCH wants to look at another discharge tomorrow (12/7).

The journey goes on....

3 West Day 6

Thank you to all our Portland friends and families. 

These flags were created by several families and their children.

Happy Thanksgiving Team Steele! We are thinking of you all, we are so thankful that we have such a wonderful group of family and friends that continue to support Steele and our family. This holiday season will be especially memorable for us because now Steele has a network of new families that love and care for him. Rachel and I cannot thank you enough for all you have done and continue to do. Truly a thankful day for all of us!

Wednesday was a big day for Steele. In addition to the Heart Failure Team meetings every Friday, the Surgical Team meets every Wednesday to discuss Steele's plan and then give us their recommendation during rounds after the meeting is adjourned. I mentioned in the last post, that I was communicating with our surgeons at OHSU regarding their recommendation. I had some idea what the plan would look like, but it was ultimately up to the Stanford Surgical Team.

So, here it is:
1. Steele will get the Glenn surgery done at Stanford
2. Steele will not have the Aortic Arch repair done during the surgery because it will complicate the duration of the bypass and put him at a very high risk of heart failure
3. Move the feeding tube from his intestine to his stomach (ND to NG) and monitor how well he can adjust to a continuous feed cycle instead of the bolus feeds that we were doing the first time he was discharged.
4. If that goes well, Steele will be DISCHARGED until his scheduled surgery
5. The only piece of information that is not clear is when his surgery will happen. This could be anywhere from 2 weeks to 2 months.
6. If the short term solution is the path, then Steele will stay with us at the RMH
7. If the long term solutions is the path, we will return to PDX and then wait for the call from LPCH for the surgery and return to Palo Alto
8. Aortic Arch issue will most likely be taken care of when the third and final surgery is completed in 3 years. There may have to be an intervention surgery if the stent is presenting a problem for blood flow and pressure.

Yes, a lot of moving parts as always, but this such great news. Steele was in heart failure when we arrived and now he is scheduled for the second surgery. A friend of ours recently sent him a Superman outfit. I had forgotten what the Superman logo stood for..."HOPE".

Thanks for following and again, we are so thankful to you all!

3 West Day 1

What do you think of my new look?

Big day for Baby Steele yesterday. We were told that Steele's central line (Broviac Line) in his chest would be removed and he would move to the 3rd floor. A temporary PIV was placed in his left foot just in case he would need to go back on anything that could not be taken orally. Pretty excited because this is exactly where we were before his last discharge at OHSU. Everyone describes this new venue as "3West". We are packed into a smaller room than the "POD", and share it with 3 other pediatric patients. The expectation is that you should be as involved in your child's life as possible. This includes pretty much everything that OHSU trained us on before Steele was discharged, administering his medications, diaper changes, and keeping an eye on his vitals. The only change is he is still on a continuous feeding pump. We are very familiar with all of this, it will be good to get more involved with his care, it has been several weeks since we were allowed to participate in his primary care. Of course there are RN's and Attending Pediatric Cardiology Doc's around to help with anything, it's just an adjustment from the CVICU.

The next big hurdle in the Glenn surgery decision is for the surgical team to "buy in" on Steele's numbers, anatomy, and risk of survival. There is a lot of concern surrounding his aortic arch construction and the stent that was placed a few weeks ago. The main issue is if the blood flow will be able to passively make its way from the head and neck and then get to his lungs without too much pressure resistance from the (moderately high) pulmonary artery pressure. The surgical departments meet every Wednesday and they will assess Steele's case and make their recommendation. This is a very big day for Steele, it will either mean he will go through with the Glenn or be put back on the heart transplant list because it is too high risk. The other critical piece of this is how to deal with the stent. Part of of the surgical team's thinking is remove or repair it for his growth and future, but it means putting him on bypass. All the surgeons at Stanford prefer to do all their Glenn surgeries without a bypass, because of the potential damage than can occur while the ventricle is not working during the bypass. So, the other part of the surgical team is saying let the stent be, it's one more layer of risk that we do not want at this moment.

Yes, I know, there is rarely a black and white answer to these delicate and risky surgeries, but the Glenn has always been our primary plan from the beginning, so we are hoping that the surgical team will buy into the Glenn. The Heart Failure Team and CVICU Team are saying go for it. Rachel and I know that this is a critical decision, but we will go with what the surgeons have to offer at this point. All the Stanford Teams are also communicating with our team at OHSU with their recommendations. Steele has a lot of eyes and hands on him right now, we sure could use your positive thoughts and prayers.

Until next time,
-B

CVICU Day 60

Much has happened with Mr.Steele since the last post. We were parked in another private room while we watched how Steele's heart reacted to the transition from Milrinone and over to Captopril. He looked great over the weekend and my parents were visiting from Eugene. We were told that a Cath Lab was scheduled for Tuesday (11/17). The Cath Lab always makes me nervious and anxious. This time they wanted to take measurements in three areas of the heart with many more sub measurements that apply to overall heart function. Pressure in the pulmonary arteries or pulmonary hypertension, was a key hemodynamic element the doctors wanted to measure. The hypertension issue is huge for a Glenn Surgery. There cannot be a large amount of resistence from blood entering the lungs because the Glenn causes venous blood from the head and arms to drain passively into the lungs and it would be difficult to overcome high pressures in the pulmonary arteries.

Tuesday morning: I have to prepare myself for what they are going to do to Steele. First they give a general anethesia, then intubation on a ventilator, and insert catheters through femoral artery and vein to both sides of the heart to take pressure measurements in and around the heart.  Of course this includes blood loss and blood draws for labs. We are always consulted about the procedure, but not how Steele's body will react to this noodling of wires and anethesia.

Steele came back and we were moved back to the pod. As soon as the sedation medications began their work away from him, immediatte tarchyadia and low blood oxygen levels. Not a good place to be. Our team and parents started to make suggestions towards a calming period. Steele was given ativan, chest xray, blood transfusion, hepaprin, and high flow 02 until things settleled down. Yeah, you can see why the cath lab always makes me tense.

After two hours of figuring out the right combinaton of things listed above, he was resting around 7pm. The heart failure team and cath lab team rounded to discuss the numbers. The cath lab has to have an agreement between the CVICU team to "hand off" Steele back to the ICU. There was so much information being exchanged that I cannot repeat it in clear terms. The MD cath lab spoke to me in person during this infusion of numbers and indicated that the numbers looked much better than the last time.

Rachel and I came in today and learned the teams decided they want to look at moving Steele toward a Glenn surgery. There needs to be a buy in from all levels of pediatric cardio, This will take a couple of days, I think by Friday we will have a recommendation from the entire group.

It shook all my senses when hearing this news. This was not on the table when we arrived down here. Steele is one tough fighter! Rachel and I are still trying to process all of the options, but they comes in segments. There are more decisions to make, for example his status on the heart transplant list.  The cath lab results qualify him as status 1B, but if we want Steele to move towards the Glenn, we may want to change his status to a lower status while we attempt the new trajectory.  Because....what would happen if a donor heart became available tomorrow?

The Glenn and the 3rd repair (the Fontan) are the surgeries what we have been praying for and wanted for Steele since the diagnosis at the end of January. He has turned his heart into the route for a longer term survival before he needs a heart transplant.. All of the doctors and medical stafff are still saying "Heart of Steele!"

CVICU Day 52

Big day for Mr.Steele. The Milrinone was turned off! The next week will be his true test about heart function and true strength of his own dtermination to accomplish another major hurdle in his journey towards getting home. So, here we are again a big test for his change in plan if possible.

The sliver lining is this. Steele can go back on the Milrinone and continue his heart transplant path. Although, his journey is testing this path even as I write these words. I have been exposed to many families with multiple children with heart problems at the same time. I am not allowed to share their stories, but let me tell you this, it is truly amazing what our bodies can do to fix our physiology.

Family comes first & never loose hope that you will stand up and fight. This is the hard spot as a parent. Will your child fight or choose another path?

Rahcel, Ryleigh, and I went out on a nice dinner to celebrate one more small victory in Steele's favor towards recovery which was recomended by our medical team.


Peace,
-B

CVICU Day 51

Thanks to our awesome RN, Nicolette (Nico) for making the kettlebell and barbell patches. 

CrossFit changes lives in so many ways.

"Strong as Steele!"

We were moved to own room yesterday! It may not seem like much, but it is so much less stress on everyone being out of the "Pod". His Milrinone has been dropped to 0.2 mcg/kg, which is the lowest dose he will receive. His oral med, Captopril, has been increased and he continues to show everyone that his heart function is moving forward on the trajectory that his medical team is happy with.

If he can go off of the Milrinone, then he can be moved to the Third Floor and out of the CVICU. May not seem like a huge move, but it is a giant step forward in his heart condition. His status is still 1B, so if the heart came, he would take it. As time moves forward however, he will outgrow the shunt that is supplying blood flow to his lungs and body. His coloring will start to turn blue and his oxygen saturation's will lower. The heart failure team will begin to evaluation his second surgery if the shunt becomes a critical issue.

The original plan was to get him to the second surgery, which would be a gift from god. We have been told by several pediatric heart physicians that keeping the original plumbing is always a better option and would by him more time before a transplant was necessary.

His left arm mobility has improved a great deal this week. He is opening up his fingers and moving the wrist around on his own. It looks like he can start to roll over on his side for short periods of time.

Overall, Steele is moving in the right direction! Thank you all for sending items for the "Wall of Steele", it is so nice to come home in the evening and look at all his support and love from everyone. If you would like to send something like artwork, pictures of your family, or just positive thoughts, we would love it!

Please send to:

Ronald McDonald House

ATTN: Thwing Room M307

520 Sand Hill Road

Palo Alto, CA 94304

CVICU Day 49

Steele has had a rough couple of days after the IVIG treatment. The side effects have made him really fussy and puffy. His oxygen sats were trending on the low side, so they had to up his O2 flow. I mentioned in the last post, that his medical team is looking at two pathways, park him on Milrinone until a donor organ arrives, or start tinkering with the Milrinone and replace it with an oral medication called Capropril (Manages High Blood Pressure). So, they have lowered the Milrinone to .4 mcg/kg from .5 mcg/kg. This automatically changed his status on the list from a 1A to 1B. Yes, it's disappointing.

The medical team is testing his ability to respond to these changes, so they can get him off the central line and therefore look at the possibility of doing the Glenn surgery. That scenario would be a gift from above. Rachel and I are constantly battling the team on making too many changes at once. Finally, our battling is working so they can pinpoint the issues that come up with his blood pressure or oxygen sats. One thin at time, not four. Don't cloud the picture with all the mixing and unknown changes that will follow. Do one thing at a time, that is my advice to all you parents with kids in the hospital.

Again, it's hard seeing him fight through this, but if he can it will shoot him over the moon. One of the Attending MD's who we really like has this chant going on everyday during rounds:

"Line Defense! Nurses unite, keep Steele Alive!!"

CVICU Day 44

Hello Friends,

Sleeeeeeeep without the need for lots of narcotics

Steele is looking great from both the medical side and parental side. A new conversation has started since his weight gain and general stabilty. There are two tracks to follow at this point since his heart function has made sich a significatnt increase in his health. First option: Keep him on the same track he is currently on and move him out of the CVICU and to a floor that does not have the eyes on him at all times. Second option: This requires a bigger picture thought process. Start backing off his Milrinone (Heart Function Meds) and see how he reatcts. This is a very slow process, and at anytime it becomes an issue like high heart rate, you stop that train. We could eventually move him back to the RMH until a donor organ becomes available.

The philosophy and general thinking is this: Get Steele off a cental line to prevent a possible infection, so all his medications can be taken orally, therefore we can get him out of the hospital until the organ becomes available or he is ready for the second "Glenn: surgery". This does not mean leaving the hospital, but giving him a life outside of the hospital. Steel will still continue his evaluation until the cardiology tream feels comfortable about sending himback to Doernbecher.

This an interesting place to be for Steele and us. We have made so many struggles without a ton of decisions, but now we have two choose from if he can handle a transiton--History shows that Steele has not done so well with these kinds of changes, but his heart function has improved. Day to day, one thing at a time.

Till next time. We love you all for following our journey

CVICU Day 39

Happy Halloween from Palo Alto. Steele is doing well today. Heart function looks great, feeding schedule going very well. Our medical team is still slowly weeing him off the narcotics with Methadone and Versed. There is new conversation starting with the Heart Failure Team and Cardiology about longer term plans if the new heart does not come in a couple of months. Since his heart function has improved, they will evaluate the second of three open heart surgeries, called the "Glenn". 

My Psychologist recommend that I start writing about the heart transplant and possible Glen and Transplant surgeries to begin the initial thought processing of how the next steps will  move forward instead of a reaction that will set off triggers of fear and anxiety. Yes, I began to receive help from the hospital to deal with my stress and anxiety. I am grateful that these services are available to both myself and Rachel. 

Steele celebrated his first Halloween here. Although, I don't think he was happy about his pumpkin head.

CVICU Day 37

Steele is looking great and our Attending Cardiology Team have said today would be a great day for a new heart. The matching process may take a while however. Steele is 15 pounds! His growth chart is pretty much in a straight vertical line, so they are going to continue with his milk feeding schedule and pull back on the TPN. Since there is the one central line going into his chest, we are doing the "Line Defense! Line Defense!" cheer everyday during rounds.

Ryleigh is adjusting well in her new preschool programs, she loves to visit Steele whenever possible at LPCH, and she is in love with the Ronald McDonald House! There are so many fun and cool things for the kids to do.

You may have seen this on FB already, but here it is again:

Ryleigh is going to be a great role model for Steele

CVICU Day 34

It's been a long journey back home to Portland and back to Palo Alto.

It all started on October 14th with a plane ride back to Portland. Thank you to Tobin Nelson's Family for providing my ticket home. It sure felt great to land in Portland. My good friend and former teaching colleague, Jim Edson, picked me up. I could not have asked for a better reception. Thanks Jim! We arrived at my home and Ryleigh was out the front porch yelling at me "come here! come here!". Yes, the tears again. It was so good to hug my little girl again.

Saa Saa was scheduled to leave early in the morning, so we prepared for her departure and called it a night. I cannot thank the Sanchez family in a lifetimes how much they have supported us during this journey with Steele.

After Saa Saa left in the morning, I left for Seattle for a Spartan Race and a visit with my sister's family in Renton, WA. The mud race went really well and I cannot thank her and Chris for being such wonderful hosts. I really needed a release of stress and temporary leave of absence from the hospital. I love my sister, Katie, Chris and their son Max! Thanks so much Robinson's!!!

Returned back to Portland to begin the shut down of the house and pack up the Versa with Ryleigh. Mounds of lists and tasks that seem never ending. Ryleigh woke up in the morning with a fever and vomiting. Ok, not leaving today or tomorrow, I wanted to sprint down to Palo Alto, but I am not able to do so for the fear of the viruses that will capture both of us and make our arrival to Palo Alto not possible. At RMH & LPCH, you are not allowed to stay or visit the facilities if you have symptoms like coughing, sniffling, running nose, etc...so we decided to stay in Portland until Ryleigh was well and I was not going to get what she had.

After sorting through a mountain of mail and many phone calls to bill collectors, I was ready to begin the process of shutting down our SE Portland home. Everything went paperless, heat, electricity and water are keeping the house alive. Two days later, we were clear and left for highway 101. Yes, a longer trip than I-5, but I highly recommend the extra time for ease and beauty of the West Coast. Ry and I hit Bandon the first night and slept easily after a long day of cleaning and packing.

Bye Bye Portland, Hello Palo Alto!

Once you are on the road, you're having a choice. Go or stop. After 11 hours of travel, we are arrived in Palo Alto. Spent the weekend getting settled into our 125 sq/ft room and giving Ryleigh the RMH orientation. She is so amazing and adaptable to this whole situation. I am awe struck at how well she has handled this whole scenario so far.

Ryleigh is back in pre-school here in Palo Alto for two days this week. We hope to have her back at 5 days next week. Baby Steele is doing awesome, I think he and his medical team have found their common ground. He is listed again as 1A, so now it's the waiting game.

CVICU Day 26

4 Months Old!!

This has been a rough week for Team Steele. On Monday October 12th Steele was showing several symptoms of morphine withdrawal from his morphine weening, namely, a high heart rate, a fever, and agitation. A routine blood sample was taken to make sure Steele didn't have an infection. This is done every time he has a fever. When cultured, the blood sample grew bacteria. Another blood sample was taken the following day on Tuesday October 13th; it did not grow bacteria. So either the blood sample from Monday night was a false positive (poor sterile technique=contamination), or the sample Tuesday night was a false negative.

After careful consideration, the team decided that they were going to treat Steele as if he did indeed have a blood infection and they started a 10-day course of antibiotics and changed his status on the heart transplant list to status 7, which is the lowest status. Their rationale was that if he did have a blood infection, he couldn't accept a donor heart because the surgery would be too risky. Brenden and I were really discouraged with the news because that means 12 more days (10 days of treatment plus two days of proving he is clear of infection) of Steele not being able to accept a donor heart even if a compatible heart became available. Meanwhile, he continues to grow and needs the new heart more every day.

Today, one of the nurses noticed that Steele's peripherally inserted catheter (PIC) was leaking; the bandage covering it was soaking wet. Upon closer examination, the catheter line was broken and leaking all of his heart medication (milrinone) into his bandage. We have no idea how long the catheter line was broken, but the nurses and doctors acknowledged that it could have been the source of contamination in Monday's blood culture. We will never know if Steele had a blood infection or not, but because the team always errs on the side of caution, he must wait 12 days as status 7.

We are very thankful the nurse noticed the wet bandage and found the broken line, if not then Steele could have gone 24 hours without receiving the heart medication he needs and might possibly have had a cardiac arrest. And of course losing the PIC line means needing more access, so we had three different poking attempts tonight (Friday at 5p) to get a new IV. Thankfully, one very gifted nurse, the "vein whisperer," got the IV on the third try. Steele was tough, though, and even gave the vein whisperer a coo and smile after the poking was over.

CVICU Day 21

 

Oregon Represent!

Steele's pain and sedation treatments are being taken away, but it has caused his heart rate to be in the 200-220 range for the last 24 hours. This event is called Tachycardia. Pretty terrifying watching his heart work that hard for hours and hours. There are high risks involved with Tachycardia such as heart failure or a stroke. He is not showing signs of either. Our medical team thinks it was caused from withdrawal from his pain treatment. So, they are going back up on the morphine and ativan until his heart rate comes down to 160-170 range.

We don't know how this will affect his status on the transplant list. Please say a prayer and send positive thoughts his way today.

CVICU Day 18

Saturday's are much easier now in the CVICU

The week went fairly well. The biggest concern was getting his feeding schedule straightened out. Steele was having trouble keeping all the medications (6) down along with the breast milk. Rachel and I talked about his history with reflux and not being able to stomach all the medicines at once. The medications were spread out over the course of a couple of hours and the vomiting problem seems to be gone for the moment.

His arm mobility is much improved, he has a custom splint that he wears for 3 hours and then 3 hours off around the clock. Rachel and I continue to help with his arm therapy and mobility. He moved his arm from the shoulder on his own in the last couple of days and his fingers are moving on their own. Very good signs. Neurology determined in was the positioning of his arm in the Cath Lab that stretched out the nerve which gave him this injury :[. 

He has been running a fever off and on in the last two days which may be associated with him coming off the morphine and his heart rate continues to be high when he gets upset. It takes Steele about 30-60 minutes to bring his heart rate down once he gets revved up! He is finally starting to show his true personality again now that the pain management medications are being weened off. We are still listed as 1A on the transplant list waiting for the big call. 

Enjoy the weekend friends & thank you for your continued support for his Fight For Life.

CVICU Day 15

Steele continues to show signs of improvement with his arm mobility. He started to move his shoulder on his own and we continue to give him the Physical Therapy he needs to recover from the Radial Nerve issue. Steele was given a blood transfusion this afternoon because of low trending in his red blood cell count and oxygen saturation levels. We are still listed and actively looking for an organ donor. Palo Alto is starting to feel a little more normal outside of the construction crew that is working on driving me nuts at 1am every morning. I think its time to purchase the ear plugs.....ughh.

All in all life is straightening out its twisted back down here. We are becoming more familiar with our CVICU Team and our nearby surroundings. We miss our dear daughter Ryleigh, but are able to Skype with her nearly every night. If you have not heard, Rachel's mother, Sarah, has been watching Ryleigh everyday since my journey down to Stanford. A huge thanks to Sarah for taking on such a monumental task! If you have been following the news, you know about the terrible storm that impacted almost the entire state of South Carolina. Sarah is from Columbia, SC. We hope that all your loved one's are safe and sound. Please be thinking of her family and all the families who live in South Carolina trying to put their lives back together after such a terrible string of disasters.

CVICU Day 13

It was a birthday weekend to remember! San Francisco is quite a town. Went to the Hardly Strictly Blue Grass Festival in Golden Gate park & visited the Mission District for some modern cuisine.

Steele's arm is still not fully mobilized. He is moving it around from the elbow down, but his wrist is still flexed in a pretty tight fist. The neurology team visited him again this morning and think it his Radial Nerve was either compressed or stretched in the Cath Lab when his central line was placed. Often patients are put into awkward body positions, so they can see exactly where the line is going. Its not certain whether or not the nerve was injured during this procedure, but it is certain that he lost the mobility after the Cath Lab. The good news is it will most likely not be permanent damage.

Pediatric Physical Therapy came by and gave us a tutorial on how to help him get the daily mobility he needs to recover. So it's a time and therapy piece. The team also thinks the Central Line is okay for now, it is not causing nerve inflammation or damage. Thank goodness!!

The last piece of the puzzle is for our insurance to approve the transplant surgery and some lab work for his blood type. He should be good to go in a day or two.

A new chapter for Steele is coming....

CVICU Day 11

Hi Friends. Steele was approved for the heart transplant list yesterday morning around 10am. Best birthday present ever! One note about "The List" is this, patients can be moved up and down a 4 level scale depending on an algorithm that all the medical team buys into. I have not figured it out yet, but he is listed at a 1A, which is the highest and most critical need for the organ.

We talked last week about his lines that were placed into his chest. Here's a current pic (taken on 10.2.74)

You notice the area around his left shoulder has inflammation and a line coming out of the skin. This is called the central catheter and it allows direct access to the veins that carry blood to Steele's heart. The placement of this line has caused the Bracial Plexus nerve or some combination of the nerves to make is arm lay limply at his side with a clinched wrist. 

Here's a visual:

Our medical staff has done ultrasound to determine if the following were going to interrupt his overall mobility and may prevent his status as a 1A. The team could not find anything abnormal, but Steele is still not giving his left arm the usual movement as he likes. He is wants to throw his right arm over to sleep on his side, but since the placement of the central line, he does not use his left arm to throw him the opposite direction.

So, now there is a discussion happening about moving the central line out all together. Very frustrating due to the focus on getting "access" to his heart and central arteries for measurements and meds. Time will tell.

I want to personally thank all of you and continue to thank all of you for the Steele Fight for Life Campaign!

We had a huge day today over 7K raised for our family!!! Truly thanks. Please continue to spread the word:

If you have 5 minutes, you can always help us in the following ways:

1) Share our link (https://www.giveforward.com/fundraiser/sr5b/steele-s-fight-for-life) on your Facebook Timeline.

2) Email our link (https://www.giveforward.com/fundraiser/sr5b/steele-s-fight-for-life) to 5-10 of your closest friends and relatives.

3) Send lots of positive thoughts to Steele Thwing's community.

Thanks again for your support!

Sincerely,

Brenden

CVICU Day 9

I arrived early at this hospital this morning to make sure that I did not miss rounds. Steele was extubated around 10:30 pm. When the team came by, I immediately addressed the issue about the change in plan from his PICC line to a central line in his upper chest. We had a lengthy discussion of how placement procedures are done in cath lab and how it was better to have better "access" to his heart through the clavicle region of his chest. Using a PICC line near the femoral artery is only short term due to the location and presence of it getting infected since its near his crotch. Ok that makes sense, but why were we not informed by phone? "We did not think it was a medical emergency and it looked good to go ahead and place the central line." I explained that in the past, we were always updated to changes in a medical procedure, and I would appreciate the heads-up from now on."Yes, we understand it was not thoughtful of us to get consent, but this was necessary to move forward". The difference between a PICC line and a "Central Line" is the distance that the tube travels to the heart. Central lines are much closer to the heart and are placed in left subclavian vein (which travels to the heart). Direct access with less travel time and much longer lasting for what they need to do with the tubes. There are two lines that form this central line and end at different points. This is used for medications that don't mix well and could possibly crystallize or clog the tube. It was good to get that discussion off my chest and have our first coming together moment as a new parent with concerns about his care. I realize that they are doing their very best to keep Steele's heath, body, and mind in a good spot. I'm just so tired of the constant rhetoric with "we need access to this..."

Anyway, it felt like we were starting from ground zero finally. So begins the recovery and trajectory of Steele's name on the "list". He was resting well and all the Doc's that I spoke with said "he looks good clinically..."

Happy for now, who knows what tomorrow will bring.

CVICU 8 Days

Good day for Steele yesterday. They pulled him off the CPAP, put him on assisted 02 Canulet, and his feeds returned in small increments. This made life much better. His pain meds were also lowered and one was taken away. Temperature returned to normal and a pretty happy guy.

Today is completely different. Super fussy because of withdrawal from pain meds, HR increased and he needs a new PICC line. The old one step forward two steps back routine. Since Steele is a new patient, they have not quite dialed him in with all the medications. They hauled him off to the Cath Lab for a new PICC line. The Cath Team told us that they would go in through one of his lower extremities in the femoral artery. When we showed up after getting a phone call that he was done, they had completely changed the plan without our consent.

Not only had they changed the location of the PICC line to his upper chest, they intubated him again. I'm at my limit with this. There will be a discussion of why we were not contacted prior to the change and why was this change necessary?

Not a good day for Steele or his parents & especially not a good day for the staffing at LPCH after the fact that we were not informed before moving his PICC line.

I have been working with a team to get a fundraising site going, which should launch in the next couple of days from "Give Forward". You will be notified via email and social media--Look for this logo:

Thanks to Geoff Cecil for the logo!

Stanford 9/28/15

Every Friday is transplant evaluation day at Lucille Packard Children's Hospital (LPCH). The unit that Steele is actually in is the Cardiovascular Intensive Care Unit (CVICU) I'll refer to the new acrynoms often now that I am here. Yes, I landed in San Jose Saturday around 11pm. After speaking with Rachel about Steele's denial for a transplant last Friday and the emotional toll that she was going through, I called my good friend, Dave Prom, and he immediately booked a flight for me down here. Rachel and her friend, Jessica (Dorcas), picked me up and we drove back to the hotel for the evening. I could already tell that my life was about to change again. Rachel woke me up in the morning and we jumped on a shuttle from the Stanford Guest House to the LPCH. Luckily it was Sunday, which meant there was very little activity going on at the hospital. The Stanford Campus is incredible, I have forgotten how immense and sprawling everything is down here. Rachel helped navigate me throught the new labyrinth  at LPCH to the CVICU. Finally, I was standing next to Steele again. He was still intubated and on 3 pain medications, so he would respond to my touch, but not fully awake. It got emotional fo course, and I just held his hand for a while.

Rachel got the call that we could move out of the Stanford Guest House and into the Ronald McDonald House or RMH. The nice thing with the RMH is that it is a 10 minute walk with a shuttle that runs every 15 minutes to and from the LPCH. Really convienient. The thing that is not so great is all the construction that is going on near the property. RMH and LPCH are both building huge new facilities, so at about 5 am this morning, the heavy equipment and drilling starts. The RMH is mostly run and operated like a convential hostel house. There are private rooms for each family with a small convertable bench for siblings to sleep on. Each family gets a food storage locker and small refridgerator located in the massive kitchen space. They do not allow drugs or alcohol on the premisis, yeah right? I get their policy for healthy reasons. I will be arranging outdoor "Picnic's" starting around 3 or so off-site.

Rachel's phone was blowing up in the middle of the night. Steele's night nurse called and said that he had extubated himself. Yes, Steele was completely swaddled (no hands) and managed to arch his back and forth enough to force the tube out of his airway. I think he was trying to say, "enough with this thing". The nurse staff then had to hook him up to a passive breathing appartus or CPAP. Our nurse had only heard of one other baby doing that in her 7.5 years of working in the profession. Steele is showing them he's not going out that easy.

Today's goals are more rest and recovery from the self-extubation. Try and get a new PICC line in him for meds. His new team of doctors are friendly and extremely versed in all Cardiovascular ways of life. I was pretty fired up when I got down here about his care and recovery, but now I see what the bigger plan is for him. This is what they do. Trust in the process.

Back in July, I was using the languge of "One step at a time, one day at a time". That's where we are again.

Thanks so much to the Prom family and all my teaching compadres for building such a strong fence around my family right now.  We cannot do this wiuthout you guys!

Stanford

September 24, 2015

Steele and Rachel were sent down to Stanford's Pediatric Cardiology Thoracic Unit on Tuesday (September 22nd). On Monday, September 21st, Steele had a tachycardia event, which sent his heart rate into the 200+ range. This meant he was to be intubated once again and put on sedatives to calm his heart down. At that point we had been waiting for 5 days to get transport down to Stanford's Hospital. He was stable, calm and happy until Monday morning. It takes an event like tachycardia, to spark the staff into moving him. I cannot believe how our heath care works sometimes. Frustration, anger, anxiety and rapture are the words that come to mind and a few other four letter words that I won't use.

About 9:30 am we got the word that Stanford was ready and we could begin the move. The PICU staff informed Rachel and I that we had 4-5 hours to get ready. Rachel left to get her belongings from home and I stayed with Steele. 20 minutes later the Panda Team (Emergency & Transport Specialists) showed up and asked if we were ready to go? Unbelievable. The one thing I have to say about our hospitals is this, they do not know their right hand from the left hand most of the time when it comes time to help navigate a time frame.

Rachel returned to the hospital after a couple of text and phone call exchanges, I began collecting all of our belongings into whatever bags were available. As soon as Rachel returned, the Panda Team began moving Steele on the rolling space ship that would keep him alive for the duration of the trip South. I asked the driver if I could meet them at the Aurora Airport to say goodbye, he put the coordinates in my phone and I flew down the highway to the Airport. I managed to beat the ambulance and met them at the gate, drove to the hanger and helped load up the gear for travel. Steele had his own Pilot, 3 Paramedics, and Rachel for the ride. It was another emotional goodbye for us. I drove outside the airport to the end of the runway and waved goodbye as they flew overhead.

Rachel called around 6pm after Steele had been admitted to the Lucille Parker Children's Hospital at Stanford. He was stable and the new medical team immediately began the poking with the needles. Steele has had more holes in him than a swiss cheese factory. It makes me furious how much they have to stick him. Kaiser booked a hotel for Rachel that was an hour bus ride away, so she decided to try and find accommodations at the hospital for the evening. They put her in some awful room that had the air conditioning blowing around 60 degrees and a set of sheets that did not fit the mattress. She wanted to be near Steele in case anything went wrong, but the conditions were so uncomfortable, she opted to check into the hotel for the evening.

Steele's Custom Ride to Stanford

After finding out the news about the lodging and no transportation issue, I immediately started making phone calls to Kaiser. Rachel is being moved closer to campus with a shuttle service this evening. We were on a conference call with Steele's Case Manager this morning for an hour going over the details of Heart Transplant Patients. It's too much detail to go into, I'll just say we have a long road ahead still.

We should have a final plan on October 2 (Happy Birthday Bren!) for Steele's next steps. The entire Stanford Team meets every Friday for an assessment of their patients. I am driving down to Stanford on 10/5 for a couple of weeks. Ryleigh is staying in Portland with Saa Saa (Sarah Sanchez) until I can return on 10/14.

So begins a new chapter in Steele's Journey.

September 13, 2015

Steele's heart function has not improved since the last post. The regurgitation in the tricuspid valve is the biggest issue at the moment. Our cardiology team presented our last option at this point since he is simply out of options at OHSU. Steele and Rachel will be transported to Stanford's Cardiothoracic Transplant Center sometime in the next 4-5 days. We were presented with this as our last and final option for his recovery. Stanford will do their own evaluation of what he will need for a week and then choose a course of action which includes two options:

1) An emergency "Glenn" surgery, which is the second step in patients with HLHS
2) Install a Venticular Assisted Device or "VAD" that is an external pump which will keep his heart function going and wait for the donor organ to arrive. Then do the heart transplant surgery.

Rachel and Steele will be taking a private jet down to Palo Alto and then admitted to the unit. A special team will set-up Steele to travel with all his lines and medications for the duration of the transport. Rachel will stay in a hotel near the hospital until he undergoes the surgery and then we will be in a Ronald McDonald facility until he is cleared to go home. This could last up tp 6 months. Rachel gave her notice last week that she will not be able to teach for a while, I am scrambling to find a long term substitute so I can begin FMLA and travel south with Ryleigh. It would be really helpful if you could reach out to Rachel and make sure she is getting support from all family and friends. We are both anxious about not being able to be together as a family for a couple of weeks until we can sort all the schedules out.

Both of the surgery options are high risk and there is alot of concern around how successful his recovery will be. I have a friend in Portland who is an MD and has worked in both OHSU and Stanford's Pediatric Cardiothoracic Unit's. She has assured me that this course of action was the right thing to do and Steele is in the very best possible care possible on the West Coast. Stanford specializes in these patients and has access to many more resources than we currently have at OHSU.

So, here we go. The final door has been opened and now we must walk through.

August 27, 2015

Week 5 in the PICU. The last 2 weeks have been dedicated to getting him back on his oral feeds and oral medications and then reevaluate his heart function mainly by Echo cardiogram. He was on a medication called Milrinone, which helps with overall function of the heart "squeeze". The Pediatric Cardiology Team are mainly concerned with the squeeze of Steele's heart function. What this means is how hard is the heart pumping and is the blood being delivered to the places where it should be? It's a very delicate dance for patients that have HLHS. Steele's big issue is now the Tricuspid Valve in the Right Ventricle is allowing blood to back flow or "regurgitate" blood into the Right atrium:

Steele was slowly weened off the Milrinone and then slowly put back on his oral meds to see how the heart function would take. Milrinone cannot be given orally, hence the need for PICU visit. After a week of being completely off the Milrinone and put back on his oral meds, he was given another Echo. The Echo did not look good in terms of the "regurgitation" issue, which meant we had 4 options that were presented to us yesterday afternoon:

1) Get Steele moved the unit called "The Floor" and get him ready for discharge (High Risk Scenario)

2) Continue his oral medications and reevaluate the heart function again in a week, but his stay in the PICU would continue until the second surgery (December). If heart function does not improve, put him back on Milrinone.

3) Put him on the list for a heart transplant at Stanford & move him down to Palo Alto in two weeks for a second heart evaluation and wait for a donor.

4) Begin hospice care at OHSU and call family members for their final visit with Steele.

Yeah, pretty stressful options & we had 24 hours to come to a mutual agreement.

We chose #2 after several hours of weighing out all the options. Moving to Steele to Stanford at this point would be too disruptive with the school year just starting and having Rachel move as well. Taking him home just seemed too risky and stressful, because it's a time bomb waiting to blow up. Option 4 was simply not an option for us. August 26th was another benchmark day for us, but we are both on the same page. Steele will be tethered to the PICU which is going to be challenging for all of us. Our main concern is his developmental options that the hospital will provide since he can't leave the PICU unit for such a long period of time. We are working with a team that specializes in Pediatric Physical Therapy for patients like steel & being thoughtful of his cognition and visual traits as well. 

The only thing that would make the trip to Stanford happen is if he were to suddenly not be able to survive on the medications or the cardiology team determines that he is too high risk for the second surgery, and the last resort is a heart transplant. So, here we go with many more visits to OHSU and plan on getting him ready for the second "Glen" surgery in December. 

You would not know that Steele is in such a critical state by looking at him. (Taken 8/26/15)

August 11th

Arrived at PICU this morning and was told that Steele had a really good night. Less pain and slept mostly throughout the night shift. I was able to hold him this morning for 2 hours, which was a bonus! I have not been able to since his admit last Thursday. I am able to tell that he still has quite a bit of pain in his gut, he would go for about 10 minutes of rest and then wake-up, arch his back and begin to cry. Luckily he has some really good pain management with Fentanyl drips. Wish I could have some of that during his fits as well!

The plan has not changed, he is still on a course of antibiotics, no feeding and let him rest. Recovery at this point is the name of the game, which may last another day or another week...it's "The Steele Show"! Lot's of lights and a big audience, but no camera's allowed (sorry).

Thanks to all that have been sending their best thoughts and prayers to a speedy recovery.

August 10th

Back to visit Steele this morning in the PICU at OHSU. Report this morning: The infected tissue swelling is not spreading and the antibiotics are doing their job by bringing the infection down, no additional intervention needed at this point. Steele is still in a lot of pain however, very fussy. Between not being fed his regular diet and the infection, not a happy camper. His central line that was in his Femoral Artery is being taken out this morning and being replaced with a pic line in his lower left extremity.

More poking, more proding, it never ends. He will indefinietly be at OHSU for another week while the antibiotics and all other symptoms take their course, there is no discussion of moving him out of the PICU at this time, pretty frustrating. The good news is, there are no further issues at this point, he just needs rest and time to heal.

All the Doc's and Cardio Specialists cannot tell whether the infection was present before or after the cath procedure, but the infection is what set off this latest course of action for his extended stay. He will get xray's every 12 hours that will show the internal side of how the infection is taking its course, which is a longer duration than the 6 hour scheduling. An Echo-Cardiogram will be done this afternoon to show how well the Angioplasty is taking in his Aortic Arch (Blood Flow to the Right Ventrical).

Ryleigh made it safely down to Eugene with my parents and is doing well. Thanks to Mom and Dad for giving us the time we need at the hospital with Steele.

Alright, back to the time funnel at OHSU, happy Monday.

August 6-9

Steele went in for a regular scheduled cardiology appointment last Thursday and we were told at the end of the appointment that he would have to be re-admitted for an Angioplasty in his Aortic Arch exactly where one of the inital procedures of his Norwood surgery back in June happened. In medical terms it is called an Interrupted Aortic Arch Type B which is close, but not exact like this:

Part of the vessel that was interrupted was cut and and sewn back onto itself had begun to shrink called "Stenosis". If you can imagine taking a hose and shrinking just a section of it but continuing the same amount of water flow through the tube, it creates a much higher amount of pressure in that specific narrowing spot. This was causing two problems: 1) His Right Ventricle was working that much harder to push the blood through the vessel and 2) blood flow was not being delivered to key areas of his body.

I had mentioned the feeding problem we were having. He seemed to be in pain during most of his feeds and he was fussing at nearly every feed. Dr. Kelly (Our Pediatric Cardiologist at OHSU) decided that the combined stenosis in his aortic arch & diet issues were enough to have him admitted for a catheter angioplasty procedure and his diet was changed immediately. A lower amount of lactose in the formula and the amounts of milk were taken down and then gradually raised at the end of the day. In other words he would start with 60mL at 6am and at 9pm be given 80mL. The rest of the evening would be given to him through the tube on a pump at specific increments throughout the night.

He had to give blood for labs before being admitted, which was an excruciating 1.5 hours of screaming and no results. His veins are so tiny and almost shaped like a corkscrew. A special team was called into the blood lab and get a vein, but no luck. He was finally admitted after 5 hours of waiting around in the lobby & began his new diet plan. He was scheduled for the "cath" procedure on Saturday morning around 8:30am.

The cath went fairly well according to the team, this meant that they were "good" with the amount of the balloon stretching in the vein, the numbers were in the normal range for blood flow. He was then admitted once again to the PICU for recovery and observation. Steele was put under full anesthesia for this treatment, which is why the admission to PICU. Rachel and I went home with Ryleigh and waited for the phone call when he would wake-up, start breathing on his own and hopefully get extubated. Yes, he was intubated for this procedure. Hours and hours passed and no phone call, I was getting worried. I called the PICU and asked for an update and they were still waiting for the order to extubate. We all headed to OHSU around 7pm and found out that he had blood in his stool and an infection was ocurring in his stomach or somewhere in the intestines, they could not tell us which, not good news.

He would go on an IV for antibiotics and be fed sugar water for nutrition. The goal here was to fight off any infection and not put any stress on the stomach. The piece that frustrated us, was that this cath procedure was going to help, not make it worse. Overnight he was watched closely and Rachel came back early in the morning on Sunday. The order came in mid-morning to extubate him, but keep him on the fluids, antibiotics & pain med's. My mother came to town to pick up Ryleigh and take her down to Eugene for the week, so we can focus on the hospital visits. So, here we are back in the PICU walking on glass again. It's about 5:30pm our time and his blood labs are looking better, he his on high oxygen flow and trying to fight back once again.

Steele is one tough dude, I am scared and praying he can pull through another round of heavy duty bull riding. Hang in there bud, we love you to pieces!

August 4, 2015

We have started venturing out as a family this past week to the local rivers, park concerts and various social gatherings that spring up around our neighborhood. Rachel and I are doing our best to keep Steele on his 3 hour feeding cycle, which is not that bad during regular daylight hours, but the midnight and 3 am feedings are becoming increasingly more difficult to maintain. Our hope for the nutrition appointment this week will indicate some minor changes to his schedule so we can get more rest in the middle of the night. I almost forgot what the "Zombie Parent" syndrome was like when we went through this with Ryleigh. I couldn't imagine trying to get up and teach 200 high school students at the moment, hopefully when I return back in the fall, Steele will have a modified schedule that will better suit our need for consistent sleep. Ryleigh has been really helpful with his care, she is so curious about his needs and is trying to do the best she can. Last night when we were driving home from an evening concert in the park, Steele was getting fussy in the car. Ryleigh started singing to him and comforting him almost the entire way home. I am so glad that she wants to be a part of his care and role as a big sister, I was a little anxious about how she would respond to a new sibling. She truly has a caring nature about everything around her with the exception of the 12+ princess wardrobe changes that occur on a daily basis.

The venturing out piece has been going fairly well. It takes much longer to prepare and get out of the house within a 1-2 hour time frame. I have decided not to make any firm time commitments (except doc's appts) because the stress of getting him fed on-time and gathering up all the necessary gear is not worth it. For example. last night we wanted to head out for one of the free concerts that Portland Parks and Rec offer each summer starting at 6:30pm. It took us 2.0 hrs to get everyone fed for dinner, pack the car and leave. We have to learn how to streamline the process, but at the same time you cannot rush Steele's care or feeding schedule.

Recent photo's from our out-of-home adventures:

Molalla River

There's always a way to modify the feeding tube

Sellwood Park Concert (Thanks Jessica for the hilarious "Thwing 1" & "Thwing 2" T's!)

July 27, 2015

Steele Hanging Out on Monday Morning

This past week went fairly well. He is doing well without the use of the oxygen tanks, which has made his care much easier than before. The new challenge is getting him increase the daily feeding goals. Currently, he will take about 1/2 of the bottle every 3 hours, the remaining milk & medications are given to him through the NG tube. Rachel and I had a difficult weekend with the feeding schedule. We would get through the initial bottle phase and then switch over to the tube and he began spitting up after nearly each feeding, which dropped his overall intake and weight. We were concerned about his weight loss and holding down medications. OHSU gave us a list of "Red Flags" to watch for, one flag is a weight loss of .3kg in 24 hrs. We kept a close eye on him and tried to slow down the tube intake, and he seems more stable today. It is stressful when you are trying your best to meet hourly nutrition goals and you fail. We are going to change the type of dietary supplement that is added to the milk, nearly all his tube feeds seem to cause stomach issues. We are consulting with the nutrition team at OHSU to find a solution. We really would be happy if he did not have to have the NG tube in for the duration of 6 months. I mentioned in the last post, that if he can reach higher bottle intake goals on a regular basis, the tube will be removed.

This week is free of appointments, finally!

                                             Ryleigh is learning the ropes of child care:

July 22, 2015

It's been a while since the last post, I apologize for not getting the daily entries in. There will most likely be weekly entries from now on. The Thwing's are much busier than ever at home.

I travelled to South Carolina successfully, minus a cancelled flight out of Charlotte. Thanks to Rob McAtee for making the drive from Lake Murray to pick me up at the airport. As soon as we arrived back at Lake Murray, Ryleigh bounded out of one of Villas and into my arms screaming "Daddy, Daddy!!" I broke down in tears and was so thankful to finally see her again. The anticipation on the plane ride kept me awake most of the trip. We immediately went to have lunch with the family and begin to catch up on the latest from Rachel and Steele.

It did not take long to adjust to "Lake Life". Boiled peanuts, a beer and one boat ride later, I was securely adjusted with my host family and the best that South Carolina has to offer in the context of nutrition and an awesome family. There is nothing better than Southern food, relaxation, cool vibes and a lovely family. The Sanchez's, McAtee's and Jacobs' families are truly wonderful hosts, thank you to everyone for the excellent meals, progressive cocktails. and just all around great memories that are shared every year. I love you all.

Rachel and I were in contact via phone for most of the trip. Steele was taken to his first Pediatric appointment which was somewhat of a fiasco because of the 3 hour time commitment and a trip back to the house while my sister Katie assisted Rachel in my absence. Thank you Katie, you are the best! The main concern tracking Steele's weight and O2 saturation levels. He is weighed and his oxygen levels are measured everyday for specific targets set forth by the cardiology team and nutrition specialists at OHSU. These are tracked everyday along with his feeds that are broken down into two sets of numbers. Bottle intake vs. NG tube intake. We then call or email the numbers off to the medical team at OHSU every Tuesday for their tracking. Nearly every week there will either be an appointment with the Pediatrician or the Cardiologists at OHSU.

When Ryleigh and I finally arrived back in PDX last Saturday, we were greeted by Rachel and Mona bear. Ryleigh ran excitedly into the house and went right up to Steele and said "He's soooo cute!" It was a priceless moment for everyone.

Yesterday, June 21, we were allowed to take Steele off of the oxygen as needed. This was HUGE for two reasons. 1) It gave us more mobility with him and 2) He can begin to breathe without 100% O2 support. This just makes life a lot easier for us all. He still has the NG tube for feeding puroposes, but we have about a month before it will be determined that he will keep it in until the next surgery. Our goal is to get those bottle feeding numbers up so the tube can be removed completely. He is trying hard, but will not currently finish all 75 mL of food.

Steele is adjusting very well to life at home. We have a 3 hour feeding schedule, which is becoming easier as we get our routine in order. I still have a long list of daily tasks before cruising altitude is reached. Ryleigh is doing well around her new brother. She is being parented on her new set of boundaries and is actually really helpful with care. I'm still in shock that she has a little brother to look after.

A huge thanks to all our families and friends that are supporting and helping us out day in and day out. Also, want to thank everyone that is following this and leaving such kind thoughts for us as we navigate these uncharted seas.