Dad’s Fight for Hudson

This weekend has been extremely rough emotionally and physically for me but more so for Hudson.  On Friday night, Gabby flew home to get Hayden and Hayley and is flying back now as we speak on Sunday night.

I went for the usually daily on Saturday morning at 9am to hear what the team had to say for Hudson and spent the majority of the day with him except for a lunch break.  His day was mostly stable, but the one ‘different’ thing about him is that he REALLY wanted to feed and he kept the pacifier ni his mouth for about a good 9hours.  He would feed slightly from a bottle, just some 5cal sugar water around 10ml at a time, but something wasn’t quite right…  he would get irritable briefly then really want more…  The pacifier is the only thing that really kept him settled.  Around 7pm at night they change shifts and Gabby and I usually hang around for the shift change to make sure we are comfortable with the nurse coming on duty and get to know him/her a little bit and also to lsiten to the night time rounds.  I was comfortable and was about to leave around 830pm but noticed his heart rhythm looked very slightly off.  I mentioned something, but I was told it was just a regular sinus rhythm (normal)…  I was a little concerned so I pulled up a chair and sat beside my little boy and whispered to him for a little while and talked to him and rested my hand on his forehead by his bedside.  He was irritable and hungry but really struggled to eat.  An hour later, I noticed his old irregular heartbeat started to show up very infrequently and mentioned it again.  They again said, it’s ok to have a few.  I reminded them that this is how it started before here… and in BC.  I asked what changed and they said nothing, but after I reviewed all his medications I asked them if they switched a specific drug (amiodarone) from giving IV to oral and yes, it changed.  I started to wonder and then asked about another drug (metoprolol) that was given at 800pm that was supposed to help control his heart rhythm and it was given, and I mentioned that it was odd that it’s not really having an effect on him even shortly after being given.

I started to talk about the problem of him getting a 27calorie/oz formula and how it’s too coincidental that the day before we were admitted to BC Children’s we bumped his calorie from 24 to 25.5 and that evening how he REALLY struggled and was very irritable to the point that we could not console him and he was dripping sweat and how when we dropped it back to 24 the next day, he was fine for the remainder of the week (4 days) until we bumped it up to 25.5 and the day after he had problems again…  This time more serious, his heart rate jumped to 230-260 and they couldn’t get him out of it… a bag of ice on his face to ‘shock’ him to take a deep breath did not work…  they were about to give him a drug (adenosine) that is supposed to block the fast heart rate but I said once that this drug does not work on him he is resistent to it but they would not listen the first time and tried it anyways… I decided I better let them do their thing.  It did not work and I could not hold it and said, they’re wasting time because I’m confident he is resistent to that drug because of tests they did after his surgery.  Finally they moved and brought him to PICU in BC Childrens and they gave him amiodarone in bolus shots… 5 large ones for him… and he crashed and they needed to give him CPR for a good 2 minutes.  I can’t even express my feelings properly here in a blog except that I would never ever want anyone to see their 4month old child have to go through that…  the sounds of everything from machines to him are unerasable.  They put him on an infusion of amiodarone at a slower rate and told us that his echo showed significant leaking in his heart and that his heart function had significantly deteriorated.  After they had their discussion, they came back to us and said they are probably going to ship us to Edmonton.  I asked why?  And the answer was that they thought that’s what we wanted to which I promptly answered, “for a planned Glenn surgery, yes… emergency no, if it can be done here”.  They then finally said after much prompting that there is the possibility that he needs a transplant and they don’t have a transplant program here in BC yet and apologized.  We then realized the severity more and how fragile Hudson really is…  I was a little bothered that it took prompting to tell us what was wrong and that they were a little hesitant about it…  It was very emotional for both of us and stressful not knowing how to juggle everything, work, kids, transportation, packing, etc…  Gabby went off with Hudson and I flew out quickly shortly after.  I had not even had a chance to say goodbye to my other 2 kids.

I would share with anyone and everyone and all the nurses the story and experience in BC and in Edmonton about the high calorie formula.  And one day finally, one of the other Intensivists finally seriously considered what I was saying for weeks about the food so they stopped it and he was doing a lot better.  This led to other things where they found that he really was having trouble absorbing things in his stomach, including his medications.  The ones he was taking orally were not being absorbed so who knows what has been going on for so long!  The drugs were supposed to help control his arrhythmias and they weren’t being absorbed, possibly why he had all these problems in the first place for the past few weeks.  It’s a little frustrating.  Hudson had 3 cardiac arrests in the past week and everytime I could see them build up and could see what was going to happen I would make sure I was heard.  Why was the oral version of a drug not working when the IV version was?  That was another hint.

I could ramble on more but in the end, Hudson finally got off his oral meds for the time being and stopped getting the higher calorie formula and is having a lot easier time poo’ing instead of straining and overworking himself and his little heart, this is how fragile he really is.  After his last crash, they had to cool his body down to 33 degrees celsius to try and protect his brain.  Today (Monday) they started warming him up and making sure he remained stable.  That’s the goal over the next couple days, is to keep him stable and get him in the best condition possible for his surgery.

The scariest part of it all yesterday was when he had crashed that they almost put him on ECMO (a portable heart/lung bypass machine) but I would not give verbal permission for that.  Instead I went to see him and he was stable. How they hook up ECMO is not pretty and looks barbaric.

When I look back at things?  I thank God for giving me the knowledge to check my sons heartbeat in the beginning and recognizing the irregular sound, and the wisdom to bring him to BC Children’s.  I’m thankful for being diligent in observing him and knowing him and every little detailed change in him down to how an extra 1.5calories per ounce of formula affects him.  I’m thankful for being with him up the the minutes before he was discharged from BC Children’s and him telling us ‘no, i’m not ready’ and for the doctors decisions to send us to Edmonton.  In Edmonton, the teams are excellent and they know their stuff but not the intimate details we know of him.  The little details helped them make the right decisions.  We’re thankful he has a surgery date finally and pray that he recovers safely and quickly.

Thank you all for your prayers.

–Chris