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