Laura's Story\

Laura’s Story – Part 18 – Still waiting …

By New Years, Laura had begun looking really good! She could hold her head up for brief periods and move her head side to side while sitting up – a major accomplishment for her! This was the first physical development milestone that she hit other than being able to hold onto a toy which by 3.5 months is not that impressive anymore.

We have a longstanding tradition with a pair of our friends to do New Year’s together and being in Edmonton wasn’t about to stop us! They made the very long trip with their 11 month old to spend a couple of days with us at the hospital – thankfully our apartment had 2 bedrooms so having guests wasn’t too tricky. It was amazing having them out there – they are some of our best friends and with Laura doing so well it was nice to have the time to catch up and relax a little. IMG_5717.JPG

As far as Laura’s respiratory status – she was finally back onto high-flow trials! It was great because we’d be able to see her face for a couple of hours at a time and moving her around was easier on high flow. She was receiving full feeds (breastmilk) and was beginning to gain a little bit of weight. When she was born she weighed 9 pounds 12 ounces but after all her sickness she had lost nearly 3 pounds. Finally she had gained a little bit above her birth weight! She was now weighing it at about 10 pounds which was great – the bigger and stronger she could get before transplant the better.

We met with the transplant team every day and discussed little odds and ends about waiting for transplant – we talked about her antibodies (of which she had none at this point) and all sorts of other blood work that we kept an eye on for transplant. As far as the Berlin Heart went, it was finally beginning to be a little easier to move around without messing with the fill – it had healed enough around her skin that it was pretty well held in place. This was fantastic for getting Laura up and sitting a bit more often – our goal was to have her sitting at least 3 times a day for a minimum of 5 minutes. We didn’t always hit that goal but we did our best.

Medication-wise Laura was on very little. She wasn’t on any medications for her heart and no antibiotics for the first time in quite a while. She remained on sedation and pain-relief medications not for pain but to combat some severe withdrawal. She was on Ativan, Methadone, Clonodine and Hydromorphone (Dilauded) – the dilauded was still being run through IV but the rest were being taken orally. We were beginning to wean her narcotics but we knew it would be a long road – she had been on high doses for a very long time.

Withdrawal is very real – it causes sweating, jitters, high heart rate, high blood pressure, fever, chills, irritability, inconsolable meltdowns, and more. It was less important to get off the meds quickly than it was to keep her withdrawal symptoms in check – especially with a weakened heart.

The one major issue at this point – access. Laura had pulled out her scalp PICC line and we were down to using one PICC for everything which is really not ideal. We had already tried for a PICC line elsewhere on her body and she had no usable veins – the solution: A Broviac line. A Broviac is a long-term central line that is placed surgically into either the groin or the chest. The surgeon makes a small incision, locates a good central vein (femoral in Laura’s case), pulls it out to where he can easily get an IV in and inserts the catheter. It is then sutured to the skin, looped around for extra protection and then dressed to keep pesky little hands away.

On January 4th, 2016, Laura went down to the OR yet again to have the Broviac line inserted. She would need to be intubated and we didn’t know if she’d be able to be extubated right away as she never had been before – she just liked that ventilator too much. The procedure took about an hour and a half and when they came upstairs to bring Laura back to the unit – she was on high flow! We fully expected her to be intubated but she took the procedure like a champ and we had not lost any ground on her respiratory status – this really solidified to us how well she was doing.

With all of her accomplishments lately, it became very difficult not to think about how this would be the perfect time for Laura to receive her new heart – she was healthy and not fighting any infection right now. The younger they are at transplant the higher the success rate in terms of rejection and long-term health. We were ready – but we weren’t anxious. We knew that we may be here for the long haul and that was okay. One thing that I told Jen (I seem to have talked to her a lot) around Christmas time was that

I don’t care when we go home as long as when we do, Laura comes with us.

This was so true for us. My friend had lost her baby girl weeks before Christmas and she would be headed home without her beautiful child. It really put things in perspective. I received a lot of comments over the course of our hospital stay about our strength but in the face of the alternatives – we were the lucky ones. Laura was a healthy baby girl with the exception of her heart – her brain function was good and her other organs were working well. To have come out of 127 minutes of CPR with no visible signs of brain damage is nothing short of a miracle and it helped us to remain focused on what was important – Laura’s well being. Whether we were in Edmonton or at home, we were together as a family.

Still though…it would be pretty nice if a heart came before she deteriorated again…

Current tally: Age: 3.75 months, Open Heart Surgeries: 5, Other surgeries: 2, other surgical procedures: 17, cardiac arrests: 3, minutes of CPR: 127, ECMO runs: 2, LVADs: 2, days in the PCICU: 103

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