Laura and I walked into the lab yesterday and went on with out regular routine – I gave the requisition to the receptionist who was busy making faces at Laura and asking her how she was doing. We went to sit in the waiting room but before we got there, two lab techs who we know well came to say hi to Laura. We sat for about a minute before I heard a different lab tech ask the receptionist for a form for Laura – they have a new protocol where they offer a freezing cream called maxilene for children getting pokes. The receptionist simply said to the tech,
“Laura is a regular – she doesn’t have to fill out that form. The maxilene doesn’t help her.”
A simple and helpful statement. I was glad not to have to explain to yet another person that Laura will scream with or without the cream. The actual stick of the needle doesn’t bother her one bit – the issue is being held down while having a tourniquet wrapped tightly around her arm – maxilene can’t help with that.
Have you ever had one of those moments where you realize you lead a ridiculous life? In that moment I realized how bizarre it must be that we are on a first name basis with the receptionist at the hospital lab and the regular lab techs.
For the past year, we have been amazed at how completely normal Laura is after receiving her heart transplant. When the words heart transplant were first uttered to us, we thought that all hope of a regular childhood were gone. We have led a relatively normal life with the exception of a few meds here and there and blood work monthly – really not so bad at all!
The last month, however, has painted a slightly different picture.
On Boxing Day, we went into Laura’s room to find that she had thrown up in her crib and that she had pooped right through her diaper and onto her sheets. We cleaned her up, changed her bedding, Lysoled EVERYTHING and then let her have her bottle of milk as usual – which she also threw up (because we’re crazy and offered a sick baby some milk…whoops).
After the second time she threw up, though, Laura seemed to feel much better and we were able to celebrate the day with my family. The only lingering issue was that she experienced 3 more bouts of diarrhea that day. Over the next couple of days her diarrhea did not improve so I brought her in for some blood work to check to see that
- she wasn’t dehydrated
- her med levels weren’t out of whack due to the diarrhea.
The blood work from that day was shocking. Laura’s Tacrolimus level (the level of her main anti-rejection med) was sky high! At this point in her journey, we expect to maintain a level of between 8-10 which she has been pretty good at maintaining but after the days of diarrhea her level was over 28! One would think that a high level wouldn’t be so bad – low would be worse because then she’d be at risk of rejection right? Although this is true, a level this high could be VERY hard on Laura’s kidneys and liver. We were directed to SKIP 2 doses and then cut the dose in half to try to get the level under control. For people who have alarms set for 08:30 and 20:30 every day and have worked the last 365 days to ensure we were never late on a dose of tacrolimus, skipping a few was very weird to say the least.
Laura’s diarrhea lasted about 2 weeks and since that time, we have been going in for bloodwork every 3-4 days.
In the last week, we have finally reached our target zone for Laura’s tac level and her diarrhea disappeared early last week which was a huge relief. Her appetite also returned which was really nice to see. We were pretty certain that we were over this bump in the road.
Last Friday, however, Laura spiked a fever which got to 38.4 even with Tylenol on board. This is the first fever she has had since last December when she fought sepsis in the hospital in Edmonton. Although she has a healthy heart now, it is impossible not to allow your thoughts to race back to that time. I also know that a fever is a main symptom in acute organ rejection which doesn’t really help to calm the nerves.
I immediately called our Cardiology Nurse and the Transplant physician on call in Edmonton to see if I should be bringing Laura into the ER.
I spoke to our nurse who instructed us to wait it out at home unless her fever got above 38.5. She also gave me the go-ahead to increase Laura’s dose of Tylenol as she is considerably larger than most infants (the infant Tylenol bottle only goes up to 23 pounds and she is 26). After re-dosing her the difference, her fever finally broke and she seemed much happier.
Over the course of the weekend, Laura continued to be reliant on around-the-clock Tylenol to manage her fever but it never got above the magical 38.5 mark so we were able to remain at home. Her appetite has been low but she is still taking in her fluids, allowing us to avoid requiring IV fluids at the hospital.
Yesterday, I brought Laura in for bloodwork again. Her behaviour had returned to normal and her fever was gone! Relieved but cautious, I decided to have her CBC drawn as well as her TAC level (I have multiple different requisitions at home) even though her nurse said that she only needed her TAC level done. I wanted to make sure that she was not dehydrated or suffering from a low white cell count. I very rarely disagree with the nurse (because she’s pretty much the best person ever) but this time I figured that an extra vile or two of blood would not be a big deal – it’s no more pokes so it just made sense to do it.
I took Laura home and felt so much better. She helped me out with some housework and she wandered around the house exploring which she hadn’t felt well enough to do in a few days. She talked my ear off and got into trouble – she seemed to be completely back to herself.
That’s when her pediatrician called me. Laura’s pediatrician is one of my favourite people – she’s an amazing doctor who works primarily in Acute Care at the hospital in Saskatoon and she’s also a mom to a toddler which makes a big difference when she suggests things (such as when she says give Laura more fluids she understands that toddlers will drink however much they feel like drinking). Her pediatrician called to see what was going on this past weekend and how Laura was doing now. I told her that she seemed much more herself and her fever was gone. Upon hearing this, she let me know that she had called to ask me to bring Laura in to be admitted, but upon hearing that she was improving, decided that Laura could stay home.
This seems a bit drastic but then I heard the results of the blood work. Laura’s neutrophils (the type of white blood cell which first reaches and begins battling infection) were DANGEROUSLY LOW. To combat infection, they need to be >2 but they were sitting at .55 – very low for the baby who usually has neutrophils to spare.
This means that Laura’s ability to fight any type of infection is severely reduced. Because she was looking better, rather than bringing her in for broad-spectrum IV antibiotics, we would instead cancel all appointments (we’ve been having almost daily appointments for a couple weeks because of all the annual transplant tests and extra blood work) and cancel my music lessons for the week so that Laura is not introduced to any new people or germs. We will re-do Laura’s blood work on Thursday to see if her neutrophils are able to recover on their own or if she will need either anti-biotic therapy or lowering her immuno-suppressant drugs while she recovers.
This is a bump in the road.
This is a moment that reminds us that Laura is different.
It is easy to worry. It is easy to get overwhelmed with it all but it is also easy to remember that before receiving this gift – Laura had NO chance. Without her heart transplant, we would never have brought her home and she would certainly not still be here with us today.
So for now, we will live in our bubble and thank God that we have the chance to fight this little battle at home. Sometimes our life looks very much the same as anyone else’s and other times it looks just a bit different. In both scenarios, though, I will always try to remember that Laura has endured much worse and we will get through this.
Thankfully, every time I begin to worry, Laura shows me that she is still the same goofy kid that she has always been and that she will be just fine. 🙂