Laura’s Story – Part 35 – biopsy

Now that we had been home for a few months, we were really starting to get into a routine. A.J returned to work and Laura and I had our own thing going at home. It was nice to fall into a bit of a groove – even if that groove still included bi-weekly blood work and cardiology visits.

We were nearing 6 months since Laura’s transplant and it was time to give some real thought into her biopsy that was coming up. Protocol states that a biopsy will be performed 4-6 weeks post-transplant, 6 months post-transplant and 12 months post transplant. After this the biopsies become yearly procedures. When we were in hospital, our transplant team decided that it was not necessary to do Laura’s 4-6 week biopsy at all – she was doing really well and her donor heart had been a perfect match. Most of her vessels were clotted so it would be more of a risk to find access for the biopsy than the team felt it was worth.

This, therefor, would be Laura’s first biopsy. The team in Saskatoon performs biopsies and heart catheterizations relatively regularly but because it was Laura’s first procedure since discharge, we decided to travel to Edmonton to have the biopsy done. We trusted that if something were to go wrong, the team in Edmonton were more equipped to handle it than the team in Saskatoon was.

We had so many questions floating around our heads

-“What if her lungs fail and she can’t be extubated?”

-“What if there are signs of rejection?”

-“What if the pressures in her Pulmonary Arteries are too high?”

-“How long will we be in hospital?”

Generally, biopsies are day procedures and there is no overnight stay. With Laura’s history, however, we weren’t convinced. Her lungs had certainly improved but they were not perfect and we weren’t sure how she would take the anesthesia after battling withdrawal for so long. We knew that we had little to worry about but our experiences over the past year told us to be cautious and to prepare for the worst.

We took off on June 27th for Edmonton and although we were only planning to stay for 3 days I packed for 2 weeks – you know, just in case. We were fortunate enough to have a foundation cover our costs for the trip and we were excited to have a mini-holiday, even if it was for a medical procedure. Mostly, we were excited to see everyone in Edmonton again, we had been gone for such a long time and Laura was not the same baby that left the hospital in February. Laura made cards for her nurses, doctors, therapists and social workers and I wrote them all notes trying my best to put into words how thankful we truly were for everything that they had done for Laura and for us.

The drive to Edmonton was much smoother than we had expected – Laura slept well and played happily when she was awake. We stopped for Lunch and to just stretch our legs for a while and arrived in Edmonton with plenty of time to grab supper and go swimming! The pool wasn’t extravagant but it was good enough for Laura and she had a great time.

We got her to bed and then hung out in silence and in the dark in the hotel room before heading to bed ourselves. Sharing a room with an infant is not very exciting as it turns out…

The next day we went in for a cardiology clinic at the Stollery and to visit our friends in the PCICU. We were so nervous that they wouldn’t notice/care when we arrived – what if we were old news and they simply wondered why we were there? We walked up to the unit and called to let them know that Laura was here for a visit. Before we even walked through the doors, a swarm of nurses and doctors ran up to us. Seeing everyone was the best feeling I had felt in a long time – it felt like home. It was as if we had finally been able to come visit the family that had moved away unexpectedly – it was amazing.

The staff couldn’t believe how big Laura was and how great she looked – they had never seen her with no tubes or wires attached to her. One of the fellows [doctor in his fellowship – not just a colloquialism ;)] came up and rolled up Laura’s sleeve. When asked by Dr Ben what he was doing, he replied

I just want to see how her access sites have healed.

After briefly making fun of him, Dr Ben quickly jumped in on the bandwagon and Laura got a thorough look-over. They were impressed with how well all her sites had healed – they looked at her sternotomy, chest tube and Berlin scars as well and were impressed with how they had looked.

After our visit we went to clinic where Laura had an ECG and an ECHO done. We then went to pre-admission to fill in some forms and meet with the doctor who would be performing the cath. We didn’t have an awful lot of questions as Laura had had caths in the past but there were a few things that were different as outpatients such as when she had to start fasting and when to bring her into the hospital.

After our clinics we went back to the PCICU to track down Lindsay and we were able to find not only her but Dr Gonzalo, Dr Ben, and Dr Dominic. Words cannot express how it felt to see her hold Laura. She was beaming from ear to ear and she couldn’t take her eyes off this healthy child in front of her. These people had been with us through everything and now they were able to see what a difference they made in our lives first hand. We also found out that Dr Dominic would be Laura’s anesthesiologist for the procedure which made us feel completely comfortable and really helped solidify that coming to Edmonton was the right decision.

Now we had seen everyone except Dr Paula, Dr Vijay and Dr John. We were hopeful that we would see them before we took off home. Unfortunately, we found out that Dr Vijay was on holidays so we wouldn’t be seeing him this trip but maybe next time…

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The morning of the biopsy was an early one. We got up at 4 to feed Laura some water and then headed to the hospital at 05:00. We got there in time to say a quick hello to the night shift in the PCICU before heading to pre-admission. We put Laura in a cute little gown and waited for her turn to be ushered into the cath-lab.

At about 08:00 I brought Laura into the theater and held her as Dominic put the mask on her to get her to sleep. He would be intubating her and then putting her under general anesthetic for the procedure. We were given a pager so that we would know when they were done.

The procedure took about an hour and a half and then we were taken into a private waiting room to wait for the cardiologist to come speak with us. Being an outpatient certainly has it’s luxuries! As an inpatient we always just waited by the aquarium in the hall 🙂

The cardiologist told us that everything had gone well and that the pressures in Laura’s right pulmonary artery and left ventricle were on the high end of normal but that they weren’t concerned at this point as she was still only 6 months post transplant and it can take time for the heart to relax. We would hear the results of the biopsy in a week or so.

After about an hour, we were able to go be with Laura and she was not happy. She was crying and wanted nothing but to be held. She threw up a few times from the anesthetic hurting her stomach and was pretty tired and worn out.

It took about 3 hours for her to start drinking her milk again and regaining her energy. An ECHO was performed and after 4 hours, we were able to take Laura home. It was insane – we certainly did not expect her to do so well but it really helped us see how far she had come. Before heading out we were able to go see our friends in the PCICU again and we saw Paula! It would have been so awful not to have been able to see her so we were elated.

We took off for home the next day and just like that, Laura’s biopsy was done and we were heading home to start our summer holidays!