We are home!

Luca continued to wake up and improve quickly as we knew he would when he got the trach placed and recovered from that surgery. It was a continued emotional stay as we weaned off the vent, had his first trach change and got him back to his baseline prior to surgery and anxiously anticipated seeing him doing “normal” Luca things. Last weekend, we started to see the little Luca we know as he started moving around, regaining some of the strength he lost and we even got his hand waves and smiles back on Sunday. We knew when we started to see the “normal” happy side of Luca, we were on the home stretch and discharge was in the near future. To our surprise, it happened sooner than we thought as we already know how to care for him with a trach and it was decided we could finish medication weaning/the rest of his recovery at home and be seen outpatient.

Luca had another airway check last Tuesday, January 2nd where his pulmonologist joined in to give the lungs a good look as well. He said his lungs are looking great (yay)! His ENT doctor/surgeon also said that his airway/voice box continues to improve and the swelling is going down, although there is still a lot of swelling due to the trauma of the breathing tube. She is not concerned about that and said it will continue to improve over time and he will continue to have checks.

His kidneys seem to have fully recovered, his liver labs continue to trend in the right direction (although it can take a while for them to recover) and his echo looked the same as his last one and did not get worse. There are no interventions his cardiology team wants to take at this point, but will continue to keep a close eye on him as usual.

Luca started walking again a few days ago! They are happy with how quickly his physical activity is returning and we are working on building back muscle and strength. As we anticipated, he did lose some weight over the course of his stay as his little body went through a lot and he was laying down for such a long period of time without moving. He passed his swallow study so he is able to drink and eat by mouth again as well as continue to be fed through his g tube.

We got back home on Wednesday and have been settling back in and getting back to a new routine at home. Luca and his dog, Eddie were ecstatic to see each other again, they cannot get enough play time in. Luca came home on several medications that we are either weaning or will hopefully be short term and get taken away as we continue our outpatient check-ins with his specialists.

Next Steps

Over the next few months, we will be back for appointments at Mayo almost weekly with his different specialists (endocrinology, GI, nutrition, cardiology, pulmonology, ENT, infectious disease) and we will also start his feeding and speech therapies again this month. We do not know how long he will have his trach, but it will likely be a couple more months at least. He has another airway check on January 16th and we will see how he continues to improve. Before going home, he was sized and tested for a PMV (passy muir valve) which is also known as a speaking valve. This is a form of beginning to cap his trach where Luca can breathe over his trach (which will work on breathing on his own) as well as eventually make noise as the swelling decreases in his vocal cords. We anxiously wait for the day we start hearing noises with this valve on 😊 Before getting his trach out, he will be tested in ways that proves he can independently breathe on his own by capping him when he is ready for that. We all want to be very confident that he will be successful before taking out the trach, so we are going to continue to listen to Luca as he shows this to us.

Although the Holidays were not as we expected with Luca in a totally different condition than we prepared for, unable to be surrounded by family and celebrations, we are happy with the progress he has made and that he has been able to recover to where he is at today. We are so incredibly thankful and happy to be home, words cannot describe. Luca has thrived at home over the past couple of days, I think even happier than he was prior to his hospital stay. He cannot stop smiling, giving us snuggles, playing with all of his toys and he got to see his nurses Alyssa and Isabelle again whom we all dearly appreciate. We are also excitedly preparing at home for the arrival of baby #2 as I am 33 weeks pregnant. Luca doesn’t know it yet, but he can’t wait to be a big brother and we have no doubt he will be the BEST brother!

Thanks for your continued prayers, support, love and following along on Luca’s journey.

Love,

The Raehsler Crew