Laura's Story\

Laura’s Story – Part 26 – Saskatchewan bound

After finding out that we would possibly be transferred the next day, A.J. headed home a bit early to pack up everything from our last 5 months in Edmonton – it was no small feat. It took quite a lot of cleaning and packing to make sure that everything was ready to go and it was not easy fitting it all in the SUV. I would be flying back with Laura so at least he had the whole vehicle to fill – and fill it he did!

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Thursday, February 16th, 2017. Transfer day. That morning seemed to take forever to arrive and yet we didn’t feel quite ready to leave Edmonton behind. The plan had not been finalized but they were ‘pretty sure’ we would be leaving that day – this is how hospital life works – pretty sure is sometimes the best you can hope for. Laura was no longer on close observation so we were able to do what we wanted – including trying to give her a bottle for the first time in her life!

The day before I had been given the go ahead to attempt breastfeeding so we were still going ahead with that too – it was interesting. Laura, at 5 months old, was rather shocked and confused at the sight of a breast lunging towards her and as you can imagine – she flipped out. A newborn knows what’s going on but a 5 month old apparently just gets creeped out that your shirt is off. Nevertheless, we trucked ahead. I would try to breastfeed twice a day and tried the bottle twice a day – I didn’t much care how she got her milk as long as it wasn’t through her ng tube forever.

We were told that we wouldn’t be transferred until 13:00 so we took advantage of our freedom. We went to the healing garden and to the play area (the beach) and then just walked around aimlessly for a while too. A.J. was there for some of the day but not all as he still had some packing to do. We were also able to track down Lindsay and a few other intensivists to say goodbye. They were so excited to be able to hold Laura and to see her looking better! It was really hard for us to say goodbye but we knew we’d be back in the summer for Laura’s first biopsy so it wasn’t too bad.

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Olaf!
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What is that?
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Sleeping on daddy

At about 11:00 or so the nurse came and told us some awesome news…there wouldn’t be room for me on the plane. They were bringing two teams to Edmonton and leaving with only Laura but the team members still needed a way home so Laura would be going without us and we would follow. Logic would say that if we left right then, we would be in Saskatoon when she arrived but there was a problem – we had to be there to make sure handover to the transport team went smoothly. Nearly every nurse on the floor got something wrong when doing handover since our arrival so I wanted to make sure all the details were correct (being in hospital so long makes a person pretty “detail oriented” – anal…it’s the nice way to say anal).

13:00 came and went and we were being told constantly that they’d be another hour. Fast forward to 17:30 and finally the transport team from Saskatoon arrived. The nurse from the Stollery began handover and, as expected, I had to correct a few minor details – like what her anaphylactic allergies were and the date of her transplant…not that those were important…

I had arranged for my mom and dad to be at the hospital when Laura arrived as well as my brother and sister-in-law (who thankfully, is a nurse). I gave the transport nurse my moms phone number so that she could call when she landed – that was such a kind gesture! She knew that it would be hard for me to watch Laura leave without me. I buckled Laura into her car seat for the first time in her life (although we had purchased it when I was about 5 months pregnant) and watched as they wheeled her away.

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A.J. and I weren’t able to follow immediately as we had to pack up the rest of Laura’s hospital room, head back to the apartment to unload a few things so I didn’t have to drive the 5.5 hours with a stroller on top of me, and then stop for a quick supper. Luckily, the lovely lady who allowed us the use of the apartment would be willing to bring the things we left behind with her the next time she came to Saskatoon.

By the time we filled up with gas and took off, it was already dark (mind you, it was February in Edmonton so that’s not saying much). We drove happily for the first few hours receiving cute pictures from the transport nurse (she didn’t have to do that – we were so grateful that she did though!).

My mom called to let me know that Laura had arrived and that she was sad but calmed down when my dad picked her up. They even changed their first diaper in about 25 years! I was so glad that they were able to be there for her but there was a nagging question in my head – it was now 21:00 – had she been given her 20:00 meds yet? I texted my sister-in-law to find out because I knew that she’d have more of a clue than anyone else. No, they were still doing handover and had not given her meds.

My blood started to boil at this point – an hour late? Are you kidding me? I called my brother and told him he needed to make sure that she got her meds ASAP – especially her tacrolimus and her ativan. You may be wondering why I was so furious – I’ll do my best to explain …

Medications all follow a certain curve in terms of when they are at their most concentrated in the blood stream. Tacrolimus follows a very predictable curve (as seen below) which reaches it’s peak around 2 hours after the dose and begins to decline quickly from 10-12 hours. At 12 hours the level returns to where it was when the dose was given – it is therefore VERY important that the next dose is given at the 12 hour mark to reatin the appropriate levels in the blood.

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when a dose is late:

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If a dose is late, the curve will still follow it’s predictable path but will remain at the lower blood concentration level. This means that Laura would not be receiving the immuno-suppression that she required to fight off rejection.

The ativan, of course, was necessary solely because without it her withdrawal could get the best of her making her rather irritable and angry.

We continued driving and I continued calling everyone to see if Laura had received her meds yet. At 22:00, I asked my brother to have the resident that was on service give me a call. Her call didn’t come until 22:30. I explained the situation and asked why my daughter had still not received her medications. Her answer was simple – she had to write an order for everything upon Laura’s transfer and it was taking her a long time to sort through it all. That is completely fair – it would take a long time to go through Laura’s extensive history – HOWEVER, as I explained to her – there was a smarter way to go about it.

I ‘suggested’ that she write the order for the tacrolimus and the ativan right away and she could continue with the rest of the orders later. I explained the science behind tacrolimus and how it works. I also explained that when tacrolimus is given 3 hours or more late that it significantly increases the risk of rejection (by about 30% – no small number). The resident had no clue. She didn’t know that tacrolimus worked that way and apologized for the delay.

It’s important that I mention that she was a lovely girl. She was very kind and she listened well. I was impressed that she was willing to admit that she was wrong and that she didn’t know that the medication worked in that way. She thanked me for the information I had provided and Laura received her tacrolimus within 5 minutes of our conversation – unfortunately, by that point it was already 3 hours late.

I was able to breath just a little bit better for the remaining hour of our drive but I was anxious to get to the hospital so that I could be there as Laura’s advocate.

We finally arrived at the hospital at 01:00 on February 17th, 2017. I was exhausted and ready to go to sleep but when I arrived at the hospital I found that Laura’s entire med schedule had been changed. It was a mess. We had worked with the pharmacist in Edmonton for days getting Laura’s med schedule to a place where it worked for her and for us. Once again, I found myself rather unimpressed.

I explained why Laura could not go 6 hours without her Ativan and the nurse didn’t seem to understand. I asked to see the resident…again. At 02:30 we sat down and got Laura’s med schedule figured out. The nurse said that Laura absolutely could not get her ativan 1 hour after receiving it to which I simply replied – she was wrong. I was too tired to be nice at this point. I explained how when Laura receives her PRNs of ativan she gets them 1 hour apart and so it would be fine – she might be a bit sleepy but it was the middle of the night so it didn’t really matter. The resident agreed and we continued with the altered schedule. I was able to work it so that it would take only 24 hours to get back on track – their original schedule would have taken about a week.

I was finally able to get some sleep before Laura’s 06:00 meds and I appreciated what little I got. I was not going to be able to draw up Laura’s meds due to hospital policy (the pharmacy actually sends everything up pre-drawn which is pretty sweet for the nursing staff) but they would bend the rules so that I could administer them. After that disaster of a transfer I was not about to allow them to give her any meds anymore. I would take over Laura’s care and that way I could guarantee that it would be done right.

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Time to get some sleep and try to stay positive for the next day…

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