When you become a parent, there is this HUGE learning curve that you attempt to navigate through – do I breastfeed or formula feed (or some alteration or combination of the two)? Do we allow screen time or not? How do we get them to sleep through the night? The questions are endless and it is NOT an easy job and it is certainly not for the faint of heart.
When we decided it was time to become parents, we thought about these questions and read about the different options available to us. We knew there would be a learning curve and we felt that we were prepared to handle it together after having been married for 4 years – giving us loads of time to figure out how we could work as a team. We talked about what books we would read to the baby, what kind of diapers we would use, when we would start solid foods, how we would sleep train, etc.
You know what we didn’t discuss? Who would give our baby the anticoagulant shot that she needed two times a day for months or who would replace her NG tube when she ripped it out in the middle of the night. We didn’t train ourselves on how to combat a food aversion or how to know when the baby is just upset versus when something is seriously wrong with their heart, lungs, etc. We didn’t discuss what to do when the baby was sleeping through the night but we couldn’t get any sleep ourselves because she would need medications every two hours and would need to be fed through her feeding tube every 3 hours.
But through it all, we survived. We lived through those first months at home with our little girl and we found a way to enjoy it despite the sleepless nights and anxiety over teaching her to eat, hold her head up, roll over, etc. I found a way to ignore (mostly) the ridiculous amounts of people who suggested a sippy cup over a bottle or trying a different bottle nipple, etc (because, clearly we had only tried one method but were keeping the feeding tube because we liked how it looked).
We persevered and got Laura to drink breast milk off of a spoon with the help of a soother and then, with a lot of praying and a whole lot of patience, after being home for 6 months, we got her to drink out of a cup with a straw!The road was long and frustrating but we made it through and we learned many lessons along the way.
These days, Laura looks like a normal toddler to the outside world, but at home, her dad and I are still trying to figure out all of her special little quirks.
In January, we hit our first major hiccup since bringing Laura home – she got Gastroenteritis which led to diarrhea which led to weeks of going in to do blood work every other day to get her Tacrolimus levels under control. She also developed eczema around this same time requiring us to come up with a rigorous lotion regime twice a day to get it under control. (to read more about this fun time read Laura’s story – Part 37 – illness and Biopsy results)
We finally got over the illness right before her 1 year biopsy which showed that Laura had no signs of rejection, all of the narrowed arteries from her transplant had corrected themselves and her heart function was near perfect!
After her biopsy it was her eczema that was keeping us on our toes – everything else was running so incredibly smoothly! By this point we no longer had to fight with Laura to drink her fluids (she actually drinks WAY more than is required hitting 2 liters a day most days), she was eating like a champ and she was healthy!
With everything running so smoothly, we were bound to hit a roadblock and that is what happened. One Sunday, my brother informed us that he had Shingles – ouch! Shingles is a horrific illness that wreaks real havoc on the body but thankfully, it is not easily caught. The only thing that made us nervous was that Shingles comes from the Varicella Zoster Virus just like Chicken Pox and Chicken Pox can be VERY dangerous and potentially fatal to transplant recipients.
To be on the safe side, we contacted the transplant team in Edmonton who were not overly concerned but advised us to watch her for the next 10-20 days as that is the incubation period for the varicella zoster virus. A day or so later, my brother called to let us know that his doctor thought that it was not Shingles at all, they thought that he had a mild form of chicken pox!
Although everything turned out fine, it meant being on high alert for a few weeks and when Laura developed a random fever right in the middle of the 10-20 day window, we were on the phone constantly with the on-call Cardiology team to decide what to do. We nearly took her in several times for some intravenous Acyclovir, a powerful anti-viral. Thankfully, her fever passed and our first chicken pox scare was over.
Fast forward through a few months of health and happiness and we hit yet another roadblock. At the end of June, Laura developed a random fever. This time was different than the last as her fever was spiking as high as 40.1 and Tylenol was barely making a dent. We were in constant communication with her team who were advising us the whole time. On day 2 of her fever, we took her into Emergency where we were told that she had a viral throat infection. Because of her history, blood tests were run, we did a rapid strep test and she had to have a catheter placed for a urine sample.
On the drive back to camp (where we were staying for a week) the doctor called us to let us know that her CRP (an indicator of the body’s inflammatory response) was quite high. He wanted us to come back in the morning so that they could have another look at her in case they missed something.
In the morning, the doctor ordered a chest x-ray and a throat culture (more thorough than a rapid-strep test). She also noticed that Laura’s ears were bulging and she likely had an ear infection. When the results of her chest x-ray came back it was clear that she had pneumonia. Laura wasn’t showing any symptoms of pneumonia – no cough, no nothing – just the fever. It doesn’t happen often but sometimes pneumonia is not heard through a stethoscope so it was a good thing we had done the x-ray. I was not surprised that Laura was showing no symptoms as whenever her left lung was completely collapsed she was also asymptomatic – she’s sneaky like that.
So after it all, she ended up having pneumonia, an ear infection and a throat infection all at the same time. Thankfully they were all able to be treated with amoxicillin and within a few days her fever broke and she was back to her normal self.
Here’s where Laura’s immune-suppression becomes clear. Many children her age get ear infections, throat infections and even pneumonia but because of her immune-suppressants, Laura was the lucky owner of all three infections at the same time. Another thing that makes Laura different because of her transplant is that the antibiotics that helped her fight off her infections also caused GI issues which led to a spike in her Tacrolimus level and wouldn’t you know it, we were in for blood work every other day for a couple of weeks…again.
I’d love to say that our summer adventure ended there but we also went into Emerge for yet another mystery allergic reaction a week after her infections had cleared up. The great thing about Laura is that she always seems to wait until the weekend to have an allergic reaction or develop a fever – forcing us to go to Emerge and bug the on-call Cardiologists frequently.
We are still on the road of discovery in figuring out which illnesses are going to cause Laura big problems and which she will be able to fight on her own. We are being reminded that although Laura’s transplant was the biggest and best gift she could have received, it has caused Chronic Illness that she will live with her whole life. We have also learned, however, that even when Laura is very ill, she can put on a brave face and act like nothing is wrong. At not even 2 years old, she knows when to smile, laugh and play to relieve some of our anxiety over her illnesses.
We are thankful every day for the gift of transplant, even on the tough days because without it, we wouldn’t be able to have had any of this time with our very silly little girl.