Monday, November 28, 2011

Week Two at Toronto Sick Kids recap of Oct 31-Nov 6

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011.  We had 15 days with him.  This is a summary of week 2.

If you havn't read my recap of Week One, read it first.

Mike and our daughter left on Sunday night to go home, while I stayed in Toronto.  I already had a hotel room booked at the Delta Chelsea for this week, since originally I was supposed to have baby on Nov 1st by planned induction and I had booked it as a place for Mike to be able to sleep for the first couple days before I would be discharged, and then for me to join him.  The hospital and the hotel are only a block apart from each other which is really helpful.

The weekend had been hard, as I described in the previous post, with dialysis lines inserted, dialysis started and stopped, and ammonia levels spiking high. They had also attached Kyle up to a fancy EEG machine over the Sunday and Monday for 48 hours to monitor for the potential of both convulsive and non-convulsive seizure activity from the high ammonia levels that had occurred on Saturday.  Apparently Sick Kids is the only hospital in Canada to have this machine - it has many more electrical leads on it than a typical EEG machine.

Monday was Halloween. Mike wrote his status on G+ and Facebook that day:

First day back home for the day ... its a bit of a blur. Feels like yesterday I left with +Cindy Babcock, but its been a week. While I was there it felt like forever, like months were passing, watching him get hooked up to so much equipment and have so many people figure out how to best care for him. Its surreal now that I'm not there, trying to imagine now what I know I experienced all week.
Cindy's still at Sick Kids with Kyle trying to be strong, Natasha's here with me excited about Halloween tonight. Its two different worlds, and yet they're both happening right now.
I met with many doctors and support staff that day.  If I was in the room, there was someone there waiting to talk to me.  If I left to drink or eat, I came back to messages that people had come in looking for me.  I spent so many hours talking to staff that day, that I had to sit and start writing stuff down.  I'm usually quite good at remembering things, but it was overwhelming.

I'd also forgotten it was Halloween, and after talking with the lactation consultant who had what looked to be a police or army uniform on, I confusedly asked her if she was part of the Salvation Army?  That was the only thing I could think of as to why she would have this odd uniform on!  Nope, just Halloween!

A week of general antibiotics had just ended, which had been given as a precautionary measure against potential infection because he was so little, but that day they found E.Coli in a urine sample.  A kidney was enlarged as well, they suspected the E.Coli infection caused the enlargement.  New antibiotics to treat the E.Coli infection were started.  None of us realized at the time how bad this infection would turn out to be.

Ammonia levels were creeping back up, and the metabolics genetics team were concerned about the levels creeping back up and the potential cyclical cycle of needing dialysis.  They ordered a special TPN mixture (Total Parenteral Nutrition) in from the States that contained only essential amino acids and no non-essential amino acids, because the TPN mixture he was on was not being tolerated by his system well since it had too much protein in it with the non-essential amino acids in the mixture.  The special TPN mixture had to be approved by Health Canada, and once approved would be MADE in the States the next day.

Feeding had not been going great the previous week, which they put down as being because he was still slightly preemie with digestive tract not completely/fully developed yet.  They were feeding Kyle a "whopping" 2ml/hour of low protein formula, but he wasn't digesting it well, because of being small. They were starting him on domperidone to help with digestion.  The rest of his food was coming from the TPN mixture, along with IV drips of glucose and lipids (fats).  On the Monday, Oct 31st, they brought his formula feeding down to 1ml/hr through the NG tube.

The doctors did an ultrasound of the brain and could see swelling, and ordered an MRI for the next day to see more detail.

On Tuesday, on top of the E.Coli being found in the urine, they found an infection/growth that had started in the PICC line.  Ugh.

Neurology came back with results from the 48 hour EEG monitoring from the weekend, but no seizures were found on it.  This was really good news in my opinion, since it meant the high ammonia hadn't caused any neurological damage.  In retrospect, if only that was all we had to worry about.  In reality, the E.Coli infection had already started to cause damage on it's own...and it affected a different portion of the brain causing more damage than the ammonia would have.

Ammonia levels had continued to go up over night and through the day on Tuesday.  Dialysis was started again.  It did bring the levels down quickly, but the machine clotted, and they had to stop the dialysis after a few hours.

The MRI didn't end up happening on Tues, there was a backup of people waiting to use it, so it was booked and done on Wednesday.

On Wednesday afternoon, they asked if Mike could come come back to the hospital so that the doctors could meet with both of us together later that evening.  Never a good sign.  Mike left work early, dropped Natasha off a relatives along the way, and made it down for our meeting. Thank goodness I had one of my friends with me that day visiting.  I was a mess.

Once Mike arrived we met with the metabolic and PICU doctors.  The doctors were highly concerned because of the infection.  It had developed into full septic shock, and Kyle was already on the highest dosages of blood pressure medication they could give him.  They didn't know if the infection had already hit it's peak or not.  If it hadn't and if it was going to get worse, they feared there was nothing else they could do, because they couldn't give any more medication for blood pressure.  Their fear was that if the infection had not reached it's peak, and the blood pressure got worse there would be nothing they could do because they couldn't increase the blood pressure medication.

They were also concerned about the swelling in the brain that they could see from the MRI.  They knew based on where the swelling was (base of brain stem and basal ganglia) that it was caused by the infection and not from high ammonia.  They were hopeful that the swelling would reduce, but it would have to be a wait and see situation.

We were told that treatment for the E.Coli infection/septic shock was a three week treatment of heavy duty antibiotics. I remember gasping when I heard three weeks...that is what cemented how serious everything was to me, since I've never heard of antibiotics being used for that long at once.

Kyle was taken off the transplant list on the Wednesday night because of the infection.  I had assumed that this meant he would be off the list for the full three weeks while treating the infection, but I learned later that as long as the infection was shown to not be getting worse he could be put back on the list.

On Thursday, the special TPN mixture that had been specially made in the States on Tuesday arrived. It had got held up at the border on the Wednesday and it took some behind the scenes work by the metabolic doctors to get it through customs.  Amazingly, this mixture did the trick, and ammonia levels kept low once this mixture started to be used.  The infection seemed to have leveled off and not got any worse, and over the next few days they were able to reduce the blood pressure medication until he was taken off all blood pressure meds.

He was considered stable over this time, and blood work showed that the infection was starting to clear up based on blood cell counts.  Although he wasn't getting worse, he wasn't getting any better either.  He hadn't been awake or been able to open his eyes since the dialysis tubes went in on Saturday.  He was responding a little bit, but not a lot, to touch, and was only moving his arms and legs on rare occasion.  What we didn't realize is that normally babies start trying to take the breathing tube out after a couple days, and he hadn't tried to.  The doctors were really hoping that he would start responding more, and ideally, try to take the tube out to show that he was responsive.

On Friday, transplant had him weighed.  He weighed in at a whopping 9 lbs (from birth weight 12 days before of 5lbs 5oz), because he was SO swollen up with all the fluids/IV's they were giving him.  Transplant includes this swollen fluid/extra weight as normal weight. Transplant co-ordinator told us that since the infection was decreasing, he could be put back on the transplant list as soon as it was approved by the transplant surgeons.  Transplant surgeons decided they needed to wait until he showed signs of more responsiveness before putting him back on the list, since they were worried about potential neurological damage.

Saturday. Swollen from all the fluids.

On Saturday, we realized why they had weighed him.  We havn't been told this officially, (and due to privacy reasons I'm sure we won't be told), but we're pretty sure it's because they knew a liver was coming available and wanted to see if Kyle was big enough as well as healthy enough to be put back on the list for this possibility.  On Saturday, in the late afternoon they brought in a young baby, maybe only a couple months older than Kyle, who had just had a liver transplant into the bed space across from us in the PICU room Kyle was in. We're not supposed to know medical conditions of the other children in the room, but, a) the surgeon's name was listed as his doctor on the wall outside the room and it's the same doctor we had been dealing with, and b) I overheard one of the nurses telling one of the other staff that he had just had liver transplant.  I'm pretty sure in retrospect that had the infection not set in, causing the permanent damage it already had, that Kyle would have been transplanted that day.

A close up picture from Saturday.
By Saturday night I was getting quite concerned.  That he hadn't opened his eyes in a week, and wasn't responding enough.  Seeing the other baby come in and realizing he had been transplanted, and that he was alert and moving around even right after surgery, was more than hard. That night I took a look at a blog that I had bookmarked (there's a link on the side of this blog for it) of a family in the States who had a boy earlier in the year with a severe mutation of OTC, who had since been transplanted to see where they were at in the same time period.  The pictures showed the baby awake, alert, and with no breathing tube, and this was after having had a severe hyperammonemic episode in his first couple days.  At this point, I knew we were in trouble, but tried to remain hopeful.

The next post will be about the final couple days and beyond.

Friday, November 18, 2011

Week One at Toronto Sick Kids. A recap of Oct 24-30th.

In memory of our baby Kyle: Oct 24, 2011 - Nov 8, 2011.  We had 15 days with him.  This is a summary of the first 7 days.

As many people reading this know, I was pregnant with a baby boy affected with a severe mutation of Ornithine Transcarbamylase Deficiency, which means that he can't metabolize protein properly.  Protein gets changed into ammonia, but it doesn't get past that point in affected children.  The ammonia builds up, causing potential brain damage, and eventually causing the organs to shut down. We were going to do medical treatment to be followed by a liver transplant.  We weren't convinced we would get to the point of transplant, because the treatment would be difficult to manage.  But we were willing to try.  We were doing it day by day.  We were going to try, and if he made it, we would go buy everything that was needed.

I was due Nov 14, or Nov 11 based on ultrasound.  I've had two previous full term pregnancies.  My daughter was born at 10 days overdue.  Our first son, who died at 3 days old due to this same genetic disorder, was born exactly on due date.  Back then, in 2003, there was no real treatment option available to us, so we did care by parent after he was born. With this history of when I went into labour with previous pregnancies, we booked a planned induction at 38 weeks, 2 weeks before due date, so that the doctors would be ready for us and ready to treat the baby immediately.  I was planning on going to live in Toronto starting one week before as a just in case...  The doctors wanted me to be in the downtown core of Toronto (over two hours from where we live) as a precautionary measure in case I went into labour early.

Things don't always work out as planned.
My Facebook Status on Saturday Oct 22:  "I will be moving to TO on monday. If you don't have my text # let me know and I'll send it to you. My phone also has facebook, so you can still find me here too."

I had been planning on taking the evening Greyhound bus to Toronto on Monday Oct 24th and stay at my cousins for the week, but it didn't work out that way.  Instead, that morning I woke up to the very slightest bit of blood upon wiping after using the washroom.  I woke up my husband and told him we should probably go into the hospital as a just in case, since I've never had any bleeding in my pregnancies, and I was pretty sure I had "dropped" about a week and a half before.

That was 7am, got in the car at 7:30am, and my water broke in the car at 8am! Contractions started about an hour later, and we arrived in Toronto around 10am. We phoned the hospital on our way after my water broke, because there were special medicines that were to be used during my labour in order to help both the baby and I due to the genetic condition. They can't be mixed more than a couple days in advance, so they had been planning on having the pharmacy mix them the day before the planned induction.  I'm not going to go into it at this point since it probably deserves a whole post unto itself, but after delivery, I went into a wee little episode of medical delirium, where I lost 8 hours of memory and went a little crazy, due to extremely low potassium levels -a side effect of one of the medicines I was given.  We'll talk about that another time.  I'm not saying that I kicked doctors out of the room, or tore all my IV's out or anything like that of course. (Did I mention I went a little crazy? And remember none of it?)

Here is a picture of me at the hospital before they had a room ready for me.

Kyle was born at 1pm, at exactly 37 weeks going by last period date.  I was really sick this pregnancy, and had a hard time gaining weight...I gained 4 lbs, and he weighed 5lbs, 5oz.  I got the natural labour I wanted instead of the induction, and without the planned PICC line insertion for me that I had been worried about having.  Up until a few days ago, I was still bruised from all the bloodwork that had to be taken, which is what they were trying to avoid by having a planned PICC line put in. Considering that I tore out my IV lines, it's probably a good thing I didn't have the PICC line in.
My FB status 4:45am Tuesday morning Oct 25: So much for moving to TO a week ahead of time. Was planning on arriving in TO Monday evening, but went into natural labor monday morning! Baby Kyle Alexander Babcock arrived at 1 pm weighing 5 lbs, 5oz, or 2.405kg for the metric people. :) He is across the road at sick kids stable in picu now.

Kyle and I right after delivery.

Kyle was taken to across the road to Toronto Sick Kids immediately on Monday afternoon.  He was started on treatment for the metabolic condition, and was on the liver transplant list by Tuesday evening.  He had a PICC line inserted on the Thursday Oct 27th due to all the blood work they were taking from him to monitor ammonia levels, etc.

The hospital treated him as a preemie, because of his size, and because the doctors said he was actually more like 36 weeks instead of 37 weeks based on a number of factors including size and digestion. They put him on antibiotics immediately as a preemptive measure since small, preemie babies don't fight infection well.

Kyle Day 1 after hooked up to medicine through IV's.

On Friday Oct 28th, ammonia levels started to rise gradually.  The plan was that if levels went above 200, dialysis lines would be inserted and dialysis started. By Saturday morning they had drifted into the high 200's.  High levels of ammonia can lead to brain damage, so the plan was to ensure the levels were kept relatively low. Kyle went into surgery to have the dialysis lines inserted.  The surgery went well, but he lost a lot of fluid/blood during the surgery, and looked really tiny after it was done.  It then takes a while to get the dialysis set up and primed, and during this time his ammonia levels spiked really high, really 600 and then to 900.  The spike in levels was unexpected. They were able to bring the levels back down with the dialysis, but in the meantime the room was crazy busy due to the spike in levels and the doctors trying to figure everything out. We had gone in, watched for a few minutes, realized it was too busy, and went and waited in the waiting room. The metabolic specialist said there were 25 staff in the room at one point between pediatrics, metabolics, dialysis, neurology, dietitians, respiratory therapists and more. They had put a breathing tube in before doing the surgery, which was to stay in for at least a few days after.

This picture is from the Saturday. PICC line in, dialysis lines in, breathing tube in, NG tube in, and IV's going in in many places.  It gives an illustration of how much medicine and equipment he was on at the time.

With the breathing tube in, he got bumped up a level on the transplant list from category 3 (in hospital) to category 4 (in hospital in ICU on life support systems).  The only category higher is 4F (in hospital in ICU on life support systems with fulminant sudden, full blown liver failure).

The plan had been to keep him on dialysis for a few days, and they would be able to adjust nutritional requirements during that time with the amount of protein they fed him, by combination of TPN (Total Parenteral Nutrition) and a low protein formula called Cyclinex via NG tube.  Nope. Plans don't work. Although the dialysis worked in bringing the ammonia down quickly, it was hard on his body, and by Sunday morning they took him off the dialysis because it caused his blood pressure to change too much. (High/low? I can't remember!)

Over Sunday night and Monday he was considered stable again, although ammonia numbers were starting to rise again.

Our daughter went back home after the birth and my mother in law came and looked after her for the week.  She came back down on the weekend, but in PICU siblings aren't officially allowed in unless they are over 12 (she's almost 10), because they can carry germs without being sick, and they don't want them transmitted in ICU, so it was hard. 

Being on the PICU or NICU floor is draining.  You can't have food or drinks with you in the room, so I would have to force myself out to go eat/drink.  I knew I needed to in order to maintain my own energy, but also because if I got sick, I wouldn't be allowed on the floor or in the room with Kyle.  It's a shared room with 3 other children (there are no semi private rooms in ICU at this hospital), and if the doctors were doing rounds, you could stay in the room while they were discussing your child, but had to leave while they were discussing other children.  If they were doing a sterile procedure on someone you had to leave.  And during shift change between approximately 7 and 8 both am and pm, you couldn't go in either.  Add in time away for pumping breastmilk...the lactation consultant recommended pumping for 20 minutes if you were double pumping (both breasts at the same time) or 40 minutes for single pumping, every 3 hours.  I pumped, in the hopes that the milk could be used after liver transplant, or to supplement the low protein formula, but nowhere near that amount.  It simply wasn't realistic in the situation.  You can also only have a total of two people in the room at a time, so if family came to visit, Mike or I would have to bring people in one at a time to see him.

When you were in the room, much of the time was spent talking to the doctors and other staff. Pediatrics, Metabolic Genetics, Transplant...each of which had the doctor on call, specialists, fellows, residents, etc, as well as supporting staff such as dietitians, respiratory therapists, transplant co-ordinators, social workers, lactation consultants, chaplains, plus your nurse for the shift.  Every staff member we met, from housekeeping to cafeteria workers to doctors and nurses were phenomenal to deal with.

During Sunday and Monday Kyle was considered stable, but the ammonia levels did start to creep back up.

This is the end of the recap of week one.  I think this post is long enough, and I will post week 2 as a separate post, hopefully by later this week.