Life update.....health issues for Jack and myself

It's been a long time since I did an update. Lately Hailey has been on my mind a lot.

We went to Australia again in November. We had a fantastic time but while on the plane I had palpitations. I brushed it off as altitude but they continued while in Australia. I was planning on waiting and mentioning it to my gp in January when I went for my yearly physical (I had a list going at this point) but in December while at work I had an episode that for the first time made me dizzy and light headed. Shortly afterwards I got chest pain. I took a T3 and kept working but at the end of my shift I went to a walk in to make sure everything was ok. The doctor wasn't concerned as I was no longer having chest pain and went through my history. He ordered a holter monitor and said I should see a cardiologist because of the kids just to make sure my heart was ok. He also said next time I had the pain I should go to the hospital to get checked out.

2 days later I had the pain again. I was at work, took a T3 and when the pain returned 4 hours later I was home and went in just to make sure it was nothing more serious. Of course it wasn't but the ER doctor referred me the the cardiologist. I had my holter (which I believe came back normal) and while waiting for my cardiologist appointment mentioned the palpitations to my dad. He then told me that when he was 40 years old he was diagnosed with Wolff Parkinson's White so I should really take this seriously. When I saw the cardiologist in January we went over my history. I mentioned my dad, Hailey and Jack (who has an ASD and VSD). He asked my husband if there's any family history on his side (which there isn't) and decided to send me for an echo.

My appointment with him is on Monday but since I had to see my gp about Jack this past Monday I asked if the results had been received yet. She told me that I have a bicuspid aortic valve. The echo also said that my aorta was enlarged but she said to wait and see what the cardiologist has to say about that. 

Could I be a genetic link to the kids and heart defects?

One thing that really frustrates me is that we asked everyone if there was any family history when Hailey was first diagnosed. Everyone said no. Then to find out 5 years later that my dad had WPW really annoyed me. Once he mentioned it I vaguely remember him having heart surgery as a teenager.

Onto the kids. Lets start with the easiest child...... Lauren!

Lauren is 4, she'll be 5 this summer and is currently in preschool 3 days a week. We have registered for french immersion and she's excited to start school in September. She recognizes her letters most of the time and we've started to get her used to the sounds. She can put together the first letter based on sound but hasn't figured out how to phonically spell out a word. She gets frustrated easily with this so we aren't pushing it. It will come with time and I don't consider her behind at the moment anyway. Nothing else is really new with her. She still adores her brother and is an amazing sister to him. I will be asking the cardiologist if she should have an echo to make sure she is as heart healthy as we think. She is perfect as far as we know.

Jackson, his last year and a half is a bit more complicated. Last time I updated he was 7 months old and was diagnosed with vesicoureteral reflux (kidney reflux). He'd been hospitalized twice and we were going to try to prevent infections to avoid daily antibiotics. 6 weeks after his second kidney infection he got a third. I was getting his urine tested every 2 weeks and in less then a week from his last test he started getting a high fever again. Of course it was at night so we waited until the morning and took him to the ER when someone was able to look after Lauren. The infection was already in his kidney's and he was hospitalized again. We decided that this was not a battle we wanted since every infection risks kidney damage at this age. We started the daily antibiotics which at 2 years old he continues to be on. We see the urologist at Children's in April so we will discuss going off them at this appointment.

When he was 6 months post infection he had a test to check for kidney damage. I can't remember the name of the test but we went to Children's in the morning, they injected him with dye intravenous and we waited I believe 4 hours. He then had a scan done once the kidney's had time to get the dye in them. He did so well and stayed still for the full 40 minutes and they were able to get great pictures. Unfortunately the results were not great. I could tell by looking at the screen. One kidney looked like the perfect bean shape. The other was less then half the size. 

As March 2015 Jackson has 23% function in his left kidney. This is due to extensive scarring likely from the first infection that was left untreated for so long. We had another ultrasound done a few months ago to check on the growth of the kidney's and while the left is still very damaged and will never regain more function thankfully the right is so far picking up the extra work. We just have to keep an eye on his right kidney and make sure it continues to work properly. At this point as long as it does he will be fine.

Heart wise we haven't been back to see the cardiologist again. He gets a thorough check up by a paediatrician every 3-6 months and as of December the murmur is still there. Next year when he is 3 we will go back to Children's for an echo and speak with the cardiologist again. He doesn't seem to have any symptoms of heart issues so this is the least of our concerns at the moment.

Thursday we go back to see the paediatrician again. None of our family or friends know this but in October I watched Jack have a seizure. Lauren was over at my mom's and Dan was at work. Jackson was 1.5 hours into his nap and I knew he'd be waking up soon. I heard him making strange noises in his room and waited for him to come out knowing he was awake. After a few minutes when he didn't come out I went to check on him. I found him on his bed with his little arms and hands shaking by his face. I tried talking to him and he wouldn't respond. I just laid next to him until it ended (probably another minute or 2). Afterwards he tried speaking but he couldn't get words to come  together for a good 10 minutes. After that he fell back asleep for another 2 hours. This is the first time I'd seen him do this. I didn't want to make a big deal about it unless it happened again but I did mention it to the paediatrician when we saw him in December. He asked if there was any history of seizures, brain cancer etc and we said no there was not (I very nearly said "but there's also no kidney issues"). He agreed that we could wait and if it happened again we would go back to see him. He also gave me tips on what to do if he had another one like snapping my fingers in his face, touching him and trying to get his attention. Last friday it happened again. This time it was a different type. We were at my mom's and Lauren and I were playing the bedroom. Jackson was running around and my mother had gone to use the washroom. When she came out she found Jack laying face down on the floor in the kitchen. She tried talking to him but he wouldn't respond. I could tell from the "conversation" that something was wrong. I came out of the room and got down beside him. The first thing I noticed was that his eyes were moving in a pattern from side to side, up and down. I tried talking to him, asking him questions "are you ok?" "do you want some milk?" He didn't respond. I tried touching  him saying lets get up but he didn't acknowledge me. Then I tried snapping my fingers right in his face and it went completely unnoticed. After a few minutes his eyes stopped and my mom asked if he wanted milk. As if nothing had happened he said "yup" stood up and kept going as normal. I now suspect he's having absence seizures. This isn't the first time he's laid down motionless. We've always thought it was just one of Jack's quirks. We didn't acknowledge it as we didn't want to draw attention to this behaviour. We also never paid close attention to what was happening at the time. He wouldn't respond and then after a few minutes would get up as if nothing was wrong. I now feel guilty for not noticing this might be something more serious.  I couldn't even tell you how often he does this because I never paid attention. All I can say is that this has not happened in the past 8 days while I've been around.

Although Jackson is small (he's wearing size 12-18 month clothes), weighs 10.5 kg (23lbs) and has some health issues I remain very thankful that mentally he is excellent. Jack turned 2 just before christmas. He talks in full sentences and is potty trained except for at night. Technically he could be potty trained at night but I'm too lazy to get up when we calls out that he needs to go pee at 3 in the morning and I just tell him to go in his diaper. He went through a hitting phase when we returned from Australia but we've mostly been able to put a stop to that. He is learning his colours and currently knows green (his favourite), orange, blue, red and yellow. He can count to 13 but likes to leave out 7.

That's about it for an update at the moment. I've been able to maintain my weight pretty well. I'm anywhere from 140-145 lbs depending on the day. I did a few triathlon's which I loved and hope to get back into it for this summer. I stopped exercising as I just don't have the energy at the moment but I'm hoping after my appointment on Monday with the cardiologist he'll tell me that it's ok to get back into it.
 I used to love my job, which I think was pretty obvious since I went back to work when Jack was 17 weeks and let Dan take 35 weeks of parental leave. The company was bought a few years ago and the changes have been massive. The quality of the products have drastically gone down and the staffing levels are terrible. I never thought I would say this but I am starting to truly hate my job. I wish there was a way I could leave but I realistically where else am I going to find a job that pays $25/hr without going back to school? I hope things change but it's unlikely to change for the better. At this point all I can hope for is that it doesn't get worse. They've taken away the competition by buying the company and since there is no competition there's nowhere for the patients to go so they're stuck waiting over an hour and a half and we're stuck dealing with angry patients, supply issues and severe understaffing. They're giving us more to do at the same time as cutting hours. It's crazy and I have no idea where this will go.

This is where we scattered Hailey's ashes 3 years ago in Australia

I still think of Hailey often. She's never far from my thoughts. The reason I finally decided to write this is something that happened at work today. We had a patient come in for genetic testing. She was pregnant and they were told there was a high risk of the baby having a chromosomal abnormality. She wasn't my patient but just looking at her broke my heart. Seeing her sitting there looking so defeated. The look on her face just brought it all back. That moment when your whole world shatters and you don't know how to put it back together. Anyone who has been told devastating news will know exactly what look I'm talking about. Technically we should've sent them away and asked them to come back when it wasn't so busy but I took my coworkers to the side and with tears in my eyes asked them to please do the test. I'd been in their shoes, hearing there's something wrong with your baby. You just want to know as soon as possible. You could tell she'd already gone numb to everything and having them wait over an hour just to tell them we can't do the test and to come back another day would've made an already hard time even harder.

I rarely get affected by this type of stuff anymore. Something about this poor girl's expression triggered me. It brought back that moment sitting in the hospital while being told Hailey had HLHS and going through our options. I remembered turning over her picture knowing I couldn't look at her while we were talking about how unlikely it would be for her to survive.

Hailey is thought about often, not just by Dan and myself but by Lauren too. She talks about her sister who had a bad heart. There's been a few times someone has asked if she had a brother or sister and Lauren will say "I have a brother and I had a sister Hailey but she died". The bluntness of a child may throw people off but I'm glad she acknowledges her. I've found myself doing it less and less in public. Not because she isn't a part of our family, she will always be my daughter and I will always love her but because it's easier then going into details. She would be in kindergarten and we're coming up to her 6 year birthday. It's so hard to believe that she was in my tummy making me throw up multiple times a day 6 years ago. I would love to go back to that time. Just to feel her again but I'm thankful for the 2 amazing kids we have. One day we will all meet again.

Halloween in Australia