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.