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!)