Post Fontan OHSU Floor Day 8, 9 & 10

Free at last! Free at last!

The last three days have been a blur. Rachel and I are trading 24 hour shifts at the hospital. Each day has been better than the last. His chest tubes and pacing wires were pulled out yesterday morning. This was huge. It means that Steele will be on the watch list for discharge. This morning we were notified that he would be discharged! Yes, yes, yes! Home for Christmas bud, we are so proud of your bravery and strength to get through this. His vitals look good, he was pulled off all the machines and is running, yes, running around the halls of the hospital this morning. Unbelievable that just 10 days ago he had his chest sawed open and a massive surgery to boot.

His team did their final rounds, and we are heading home. There are still a few medications on board that will be weened off eventually in the next few months down to just an aspirin. Crazy. There has even been talk of taking out his G-Tube! That will be the day that I will know we have moved on to the next chapter.

There are still many follow-up appointments coming, but I feel like we have just gotten through the craziest storm of our lives and the sun is shining my friends. 

The hardest part will be chasing him around to make sure he doesn't injure himself around the house. He's on a party and play restriction for 6 weeks. Thanks to everyone who have been so supportive over the years. This year's holiday season does feel much different. Our family is very grateful to all of you and we wish you the best of holidays!

I will continue to write in this journal as we move forward. Take care~B

Post Fontan OHSU PICU & Floor Day 6 and 7

There's a point when you reach a strange balance in time. Time meaning what day, what time, where is the sun? Yes, that is me folks. The PICU has spun its web around my brain. The focus is always the same, Mr.Steele. This journal entry is at the point of exhaustion and no time reference. I feel that writing comes naturally if you just let it out. I hope Steele will read this someday.

When you check in to the hospital for long term care, you must submit to the fact that you may not leave as planned or even live your life as planned, I guess that is the point. Hospitals have an insular way of deflecting the "day to day" as we know it. The only way I know it is day or night is by a shift change in staffing in our room. There are waves of introductions, "I am.., "here to..", "???". I always remember one thing when you cannot remember. Be cool, courteous, and calm.
Machines are blipping, lights are blinking, alarms are notifying. The last thing you want to do is be a jerk. I did not have an incident, but I have been tested in the last 2 days.

Okay, enough with the b.s. school teacher. Let's get down to business.

The last entry was all about the pacing wires. The Cardiology team decided to take him off the battery yesterday morning (12/17) around 8am. This was a test on his single ventricle to take a hold its own natural rhythm. The first hour was out of sync, but then the nodes starting getting along. His physiology took over and was doing fine. Remember, trust in the team, right?

A new issue came up with the drainage off his chest tubes from surgery. These drain tubes are incised into the abdomen cavity to let excessive fluids off so he can breath and let the single ventricle do it's work. These are essential to recovery and getting your organs back to "less diaereses" (swollen with fluid). In addition to the fluid coming off from surgery, you are trying to get the 3 year old to eat solid foods. Steele's nutrition is now all in his mouth, but he felt terrible from all the narcotics and pain from swallowing food. I won't go into detail, but this was not going very smoothly.

Steele was put on a "low fat" diet for about 24 hours because his chest tubes were draining essential fats for his body. There were several ongoing conversations about the lab tests, and was eating this tasteless menu for about 12hrs. I advocated to get him off the diet because the food is tasteless and he refused to eat any of it. We started bringing in familiar snacks from home, which he gladly accepted. His meal intake is all about calories, so you have to look at the nutritional information on the packaging and run the math calculations, etc....good times.

Early Tuesday morning, he was released from the PICU! Steele and I packed up our gear and moved to 9 South in Doernbecher. Now we await the ween off oxygen and medications, removal of pacing wires and chest tubes, then home. We have not been given an date, but hopefully by Christmas Eve.

Enjoying my new room out of PICU!

Post Fontan OHSU PICU Day 4 & 5

Up and walking around the unit with PTOT & a visit with healing K9's!

Good day all,

Steele is looking more like himself in the past couple of days. His voice is still very raspy along with a lot of fluid on his lungs. Respiratory Therapy is stopping by 4/day to encourage coughing, deep breathing, and tapping on upper body to get more oxygen in his lungs. The lungs are a key component to helping his single ventricle move the blood and assist with overall circulation. It's got to be really painful for him to cough, breath, and swallow with a huge incision in his sternum. 

This morning Rachel made a compelling case to his team to put him on a 6 hour round the clock Ativan dose. Ativan helps ease your anxiety and general stress, which works really well for Steele. When we were down at Lucille Packard, he was able to recover from heart failure along with swift recovery from the Glen surgery because Ativan was on board to give him some peace of mind during his stay and surgery recovery. It took several weeks for us to ween him off the medication, but well worth the investment. 

Currently his oxygen saturation is holding in the 90% range, heart rate & blood pressure look good, but the pacing wire is still hooked up. We have been told that there is a slight chance for a pacemaker, but not likely. The conduit between the upper and lower chambers of his single ventricle are getting better synchronization, it just takes time. Steele has always been a good healer, so we are confident in his physiology to take care of itself.

Steele took a stroll around the unit this morning with some assistance from the staff. He did one lap on his own and visited with some K9 lab mixes ranging in age from 2 months to 2 years of age. The one thing about our hospital stay during the holidays is there is plenty of festivity abound filled with cheer.

All in all, he's doing great...thanks to all who are sending Steele cool art pictures and signed posters for his recovery.

Thanks Mona Matthews and CrossFit Woodstock

Steele's Cousin's Holden and Santiago along with Ryleigh's entire second grade class artwork

Fontan OHSU PICU Day 3

Steele was finally extubated last night around 5pm and put on oxygen through a nasal cannulet at 3 liters. All is progressing well with him except for the heart arrhythmia. His upper right chamber and lower right chamber are not talking to one another in the correct sequence, so the pace wires are active. This is not an issue until day 7, then they will be talking about a permanent pacemaker. Yes, there is always one more thing, but for what he has been through, he is looking very good with the new remodel.

Steele is really fussy as he weens off the narcotics, so we are giving him pain medications as needed (PRN's). Rachel was able to hold him last night since pre-op, and that was awesome. The machines are slowly coming off and he was given a PIC line to receive the drips. Hopefully they will take out the central line in his neck by this evening. Steele's got more holes in him than a firing range target, he is so freaking tough.

Rachel and I are working our hospital shifts in 12-14 hour increments, and Ryleigh is getting to know her grandmother quite well these days.

The big goals are to get the fluids drained off so the tubes can be removed from his abdomen along with the arrhythmia issue before he can walk around / move out of PICU.

The journey goes on friends! Until next time....

Fontan OHSU PICU Day 2

Good morning friends and family,

First of all, thank you all for your prayers and thoughts yesterday. As parents waiting in hospital purgatory, your messages mean more than you know. It was a stressful day for everyone, but you all ease the mental work of it all.

Back to the patient, Mr.Steele. He did well overnight, sedated and comfortable. The only hiccup was heart arrhythmia. This was to be expected for children who have his condition and fontan surgery. The nerves that do the "firing" of his ventricles are out of sync, so the surgeons place pacemaker wires as a preventative measure to control the heart rhythm if necessary. His surgeon stopped by and gave the thumbs up on everything else and the fellow on the unit said the arrhythmia should not be a permanent problem. Time will tell as usual.

There is a plan to extubate this afternoon so he can start to breathe on his own, which moves along everything else in recovery. Steele began to wake up around 1000 and was moving his lips that he had "owies". We're so sorry bud, so more meds to calm you down until extubation.

Rachel and I are doing much better after a much needed nights rest. Ryleigh has made her list for Santa, which includes "infinity roblox and her whole bedroom to be roblox and put the rest of the stuff on the ground"?? I'm not sure what the translation is Santa, but there you go.

Thank you to SaaSaa for all the help with everything, we are truly grateful.

Day of Post Fontan

Steele and his team did it! Here's the breakdown:

645am: Anesthesia & sleep
715am: Insert lines (IV, Arterial & PIC)
845am:  Dissect, longest part of surgery is getting through scar tissue from previous 2 surgeries
1045am: Started Bypass
1100am: Surprise decision to reconstruct pulmonary arteries where they were stuck to aorta
1230pm: Aortic Arch reconstruction
130pm: Fontan surgery started (shunting blood from inferior vena cava to the lungs)
230pm: Fontan partially complete, begin tricuspid valve repair
245pm: Finish valve repair and other half of Fontan
300pm: Surprise decision to tuck a diaphragmatic hernia back in place since they were in there
315pm: Echocardiogram to make sure all heart repairs working before closing him up
345pm: Closing Steele up
500pm: Moved out of OR into PICU

Essentially two extra things were done that were not anticipated, and this is why the surgery lasted 7 hours.

We are back in the PICU with him now.  For the first time ever, we are seeing his oxygen saturation levels above 90%! They do not plan on extubating (removing ventilator) until tomorrow morning.  He just started to wake up and his vitals are being translated by one of the doctors that he is angry.  Totally understandable, buddy. We are sorry you had to go through all of this today and we can't wait to help you recover and heal.

Day of the Fontan

Steele went back into surgery at 7a.  They will start his PIC (peripherally inserted catheter) line and IVs and arterial lines.  The plan is that surgeons will open him up around 8a.  They will cool him to a hypothermic state to lessen the oxygen demands of his tissues: brain, muscle, and heart have a high need for Oxygen, so when he is cooled to 23 Celcius they can essentially stop his circulation without repercussion while they begin the surgical repairs.

1- First up is the tricuspid valve, which will receive a few stitches to reduce regurgitation (backward flow of blood) and thus make Steele's right heart a more effective pump. 

Next up is the 2- aortic arch repair.  Steele had a stent placed in his aortic arch in late 2015 to keep it open.  He has outgrown the stent so the surgeons will need to fillet the stent open and patch cadaver tissue around it to reconstruct the arch into a larger diameter vessel. 

Finally, will be the 3-  Fontan surgery.  This is the typical 3rd surgery for HLHS kids where the inferior vena cava, the vessel draining "blue" blood from his abdomen and legs,  is rerouted to the pulmonary arteries with a long shunt.  This will make it so that ultimately, Steele's heart does not pump blood to the lungs anymore because the blue blood is rerouted passively to the lungs. All Steele's little half heart has to do is pump the oxygenated blood to the body after it has returned from the lungs.  I am calling Steele's heart "little" because it only has half the function chambers and valves of a normal heart, however, since his heart works so much harder than most, it will, of course,

hypertropy (enlarge) like muscles tend to do.

All in all, the surgeons expect Steele to be on heart-lung-bypass for about 2 hours and the entire surgery should last about 6 hours. 

November 27, 2018

Hello Friends!

I know it has been a while. Life moves on and so does Mr.Steele. He has a big day coming ip on December 11th. Steele has visited the Cath Lab for some final pictures before the surgery to take measurements and look around for anything new since his last operation back in 2016. Steele is 3.5 years old now, weighs about 19 kg's, and is a healthy young boy ready for his next big moment in life, The Fontan surgery. Below is a magnified picture of his Aortic Arch with the original stent that was placed to rebuild his interrupted arch during the Norwood surgery. After the Cath Lab visit at OHSU, his team went round and round about what to do with the stent issue. When you look at the image, you will notice how much larger the vessels are on the left and right of the stent. This is causing an unnecessary amount of blood to flow in that area which can cause his heart to work that much harder, so that needs to be fixed. There were all kinds of discussions on what to do, but we settled on making an incision in the current stent and grafting tissue to both sides, like a clam shell, so the stent will not have to be removed and the tissue will grow with him into early adulthood. In addition to the Fontan & stent procedures, he will also have a stitch put in his mitral valve due to leakage. I know a tall order for one day.

We have been assured that this can happen in one stage vs. 2 stages, but it will be a very long day for everyone.

Our family is doing well, Ryleigh is 2nd grade, Rachel is teaching at PCC, and I continue the never ending task of educating our youth in high school. I will be updating this is often as I can as the surgery date gets closer and continue our journey together in the hospital as well.

Thanks to all who continue to support our family during these life changing phases. Happy Holidays!