The last week and a half have been quite a roller coaster with Hope. Our last glimmer of hope of coming home for Christmas was dashed as Hope continued to have runs of a-tachycardia, which she needed to be treated with an IV anti-arrhythmia med that can only be administered in the CICU. So we settled into the CICU thinking we wouldn’t possibly get out until after Christmas. One of these days we will learn not to get any of our own notions in our little heads! As sure as the sun shines, the Transplant team informed us Monday that they wanted to move her to the floor towards the end of the week – right before Christmas. This is when the negotiation began between Mom and the Transplant NP, Shelly, who seemed genuinely surprised at our reluctance to leave the CICU before Christmas. There was a comfort level and trust established through these past five months and, in truth, a bond with so many of her nurses and providers that we were both reluctant and a little sad to leave right before the holiday. Shelly jokingly informed us that she has never encountered a family that negotiated to STAY in the CICU. What can I say? We’re weirdos. We like our people and we didn’t want to go. We compromised and said if we could get out by Wednesday we would go, but if it got closer to Friday we’d rather just move after the holiday – after all we had already put up her Charlie Brown Christmas tree. As it turned out Hope needed one extra day of observation after coming off the anti-arrhythmia med so we ended up moving on Thursday to the collective pleasure of both her Transplant team and her parents. We weren’t here more than 24 hours when Hope started showing some a-tach on her monitors and we nearly had a nervous breakdown thinking we were destined to bounce back and forth between the CICU and floor, but never actually GET OUT! To everyone’s relief, Hope didn’t sustain and went back to her sinus rhythm and we are happily settled in the floor and loving it.
Some pictures of our quiet week in the CICU before transfer:
Right before her move Hope was able to replace her ND tube, the one feeding past her stomach into her small intestine with an NG tube, feeding her belly for the first time in months! She had a little handlebar mustache of yellow tubes for a few days as we titrated one down and the other up, but she handled the transition perfectly. She is now being fed to her belly only in order to go home we must find a feeding pattern that allows a reasonable window for sleep. We are also happy to report that the pharmacist’s new, sloth-like weaning plan is much appreciated by Hope and she is flying through each wean with little signs of withdrawal. She even flashes us some smiles throughout the day, normally a few minutes after she gets her drugs, but they are beautiful nonetheless.
We managed to squeeze a Christmas photo shoot in with Rose & Agnes at the CICU immediately before she had to transfer to the floor. The funny part is that Hope ended up transferring with her photo shoot blankets and faux fur background in her bed so she arrived on the floor quite in diva-style.
Since arriving on the floor Hope has pulled her NG tube out twice – in one day, too! So both Mom and Dad got a chance to replace it. We actually captured photos of her red handed with the tube in hand looking innocent and hen grinning, quite pleased with herself.
We also got some precious pictures without anything on her face – a real first!!!
Today Hope’s is five months old – and on Christmas Day! This Christmas, John and I have received the most awesome gift of the promise of a future full of adventure with Hope and a real chance of getting released, uh – I mean discharged (released sounds like jail)- soon! We can’t possibly adequately express our gratitude to every single person who has helped us along the way, from food deliveries, text messages of support, phone calls, financial support, laundry support, shoulders to cry on, cookie support and of course amazing medicinal support from the team here at Children’s. Our hearts are full and we are quite content basking in the happiness of Hope’s smiles as she sees fit to dole them out. Thank you to each and every person who has helped us – we love you and couldn’t have done this without all of your help. There is one last gift we’d like to share between friends. Christmas is a time of hope, love and miracles. In this spirit, we’d love to invite Hope’s readers to share anything their hearts feel in response to following Hope’s journey. I can’t think of a better way to share Christmas spirit than to spread messages of joy, hope and love with one another. With that, Merry Christmas to all and to all a good night!