Well, this post is long overdue, and we apologize for taking so long for an update. As we welcomed Carson into our family on Feb. 15th and have had several trips back to Mayo, the little bit of free time that we had quickly disappeared, however we will try and be better about keeping everyone updated in the future. We have adapted well as a family of four and he is the biggest blessing our family never knew we needed!

Picking up where we left off all the way back on …January 7th, Luca was doing well being back at home from the hospital after a traumatic and unforeseen long stay in the hospital after his airway reconstruction which later turned into another tracheostomy back in December. Luca got home and picked up right where he left off, playing with his friends, family and being his joyful self like he always has. Even though he had another tracheostomy, the reconstructed area remains in good shape, allowing Luca to have his trach capped for a majority of the day meaning that he is breathing through his mouth and nose normally. Luca had his first outpatient airway evaluation on January 24th where they proceeded with a dilation of his vocal cords to continue to keep them open. On January 27th on a car ride home from his cousin’s birthday party Luca began making his first noises post tracheostomy. It wasn’t very loud, but it was a very big step for him as we have not heard him make any noise since the reconstruction surgery. He began learning to use his voice more and more until all day long we would hear his squeaky little voice all day long and on some days couldn’t fall asleep because he wanted to practice yelling as loud as he could.

Luca continued to recover and get stronger over the next month with no setbacks until around Feb 6th, when we noticed that Luca’s new stoma begin to look infected. We continued to watch it and treat it over the next couple of days until on Feb 8th we did a trach change and noticed the extent of the infection. Luca’s trach site started to crater, looking like a second hole in his neck. We gave Mayo a call late at night and they told us it was probably not an emergency, however they would have someone reach out to us in the morning. As I was at work the following morning I received a phone call from his surgeon, and she said that his trach site didn’t look great, and that she thought that that our best plan was to take the trach out because things looked really good during our last eval on January 24th. This was quite the surprise as we were expecting to have the trach in for at least a month or two longer, but when I asked when she wanted us to come back down to Rochester she said she had availability in about 4 hours. This meant that I had to immediately leave work and start packing for a trip back down to Rochester. We never know how long to pack for, so we started packing suitcases. All of this was quite chaotic along with the small detail of Bridget being 38 weeks pregnant we packed fully expecting to deliver the baby down in Rochester. Prior to Luca’s decannulation he needed to have his airway examined to determine if he had enough airway to breathe properly through. After having his airway scoped, they determined that his vocals cords had started to heal together making him not a good candidate to get his trach out. As upsetting as this news was, we were reassured that the infection that he had could be fought off with antibiotics that he has been prescribed many of other times in the past, and that the narrowing of his vocal cords could be treated with a series of procedures. After this long day we went home, unpacked our suitcases and went back to the status quo. The antibiotics seemed to do the trick and Luca’s stoma started looking much less irritated.

On Feb. 14 Bridget went to her OB appointment where they did whatever they do (Bridget jumping in here- it was a membrane sweep), and informed us that we should be expecting the baby within 72 hrs. We couldn’t have been more excited to welcome our next child into this world and he couldn’t have come at a more perfect time. Luca had been doing great for a week at this point, and both of our wonderful nurses Alyssa and Issabelle picked up additional shifts to watch Luca while we were at the hospital. His Auntie Andrea and GiGi were also able to drop everything and come help between the nurses shifts as well!

Carson Nicholas was born the following day at 8lbs 4oz and 21.5” long. The birth could not have gone more smoothly, and we were so happy to finally meet Carson. The following day we brought Luca to the hospital to meet his little brother, he was less then thrilled to have to share his mom with this new guy. He avoided coming into the room at all costs and opted to run around the hallways with Alyssa. It wasn’t until we got home that Luca really started warming up to being a big brother. Luca loved signing “baby” trying to hold him and all around just wanted to be around him. This was a huge relief to Bridget and I, as with the amount of attention that Luca has received in his life we thought the learning to share part would take longer and be much more difficult. Just like everything in his life, Luca took this challenge in stride and excelled in this new reality. This was also the start to my 2 months leave from work which allowed for a lot of quality time for our family that was missed when Luca was born and subsequent months in the hospital.

On Feb 21st Luca had his second procedure to have his vocal cords dilated. This consisted of having his vocal cords cut open making a larger opening for him to breathe through, and then a medication called Mitomycin C was applied to the vocal cords as well. This medication was used as it would not inhibit the open wounds ability to heal back together. So rather than the two sides of the vocal cords healing back together, which is what happened in the past, this would allow more time for them to heal separately. Going into this procedure we were not expecting a 100% success rate meaning his vocals cords would stay completely open, but were shooting for about 50% and repeat this procedure 1 or 2 more times until he had an adequate airway to have his trach removed.

 We showed up at 8am for a 9am procedure that was supposed to last about an hour and a half, and afterwards we were supposed to go home shortly after he woke up from anesthesia. That sounded like a really easy, really cool plan, but we decided to go a different route. We showed up at the scheduled time to learn that they were behind schedule. His procedure that was supposed to start around 9, did not begin until 4pm and we were not cleared to leave until around 6. It was at this point that we realized that his suction machine, which is required to transport Luca safely was not working properly. For the next couple of hours we went back and forth between us, Mayo and our supply company to remedy this situation that we were in, but none would have gotten Luca home that night. It was around 9pm when I was sitting in the recovery room with Luca who was crying because of the procedure, Carson who was crying because he was only 6 days old, and Bridget who was crying because she had been sitting in a waiting room for 12 hours, 6 days after giving birth and later we found out she had mastitis, with no way of getting anyone home. We decided that we had to bite the bullet and leave Luca at the hospital to go home and grab his backup suction machine. Luckly my mom (Grandma Jodi) was available to come sit with Luca so that I was able to get Carson and Bridget home around midnight. But Luca and I didn’t make it home until 2:45 in the morning. Once again, we are very fortunate that Luca’s nurse Isabelle waited until we got him home to pick up allowing everyone to get some sleep after this long day. Needless to say, some lessons were learned.

After his procedure, Luca did okay the following days. His oxygen levels remained good, however his throat seemed to really be bothering him. He pulled at his trach more than he ever had in the past and seemed to be in a fair amount of pain. About a week went by when he really started to do well. He was in less pain and his voice was more crisp than it ever had been. This was very promising for everyone meaning that the medicine that was placed on his vocal cords did the trick of not allowing his vocal cords to heal back together.

On March 12th Luca had a cardiology appointment which included a echo and x ray. Bridge and myself were a little nervous about this appointment. While we were in the hospital for the December procedure he had a number of echo’s and every time the technician did it, they seemed to not be very happy with what they were seeing. We found out that the repair that was done to Luca’s heart back in August of last year to repair the pulmonary valve, had almost completely reversed itself meaning that there was a fair amount of regurgitation of blood back into his heart from his lungs. This was alarming, but after the cardiologist took a look at the x-ray they actually saw a decrease in Luca’s heart size meaning that he was tolerating the extra stress on his heart well. We will still need to address the pulmonary valve at some point in the future, but at the moment his doctors feel he is in a safe place and we just need to watch for signs of heart failure. The correction for this would either be going back in via open heart surgery to replace the valve, or a much less invasive catheter procedure where they would be able to place a valve stent to replace his pulmonary valve. We would obviously prefer the latter, but Luca needs to gain some weight to allow his arteries to be big enough to pass the valve stent through. Mayo would like Luca to be at least 35lbs prior to this procedure, otherwise it would make Luca the smallest kid to have had this done.

To keep up with trying to continue keeping Luca’s vocal cords open, we had another airway procedure on March 14th. Here, they completed another dilation and dose of the Mytomycin C topical medication. During this scope, they were hoping to see more of an improvement from the topical medication than they did. His surgeon decided they would do one more round of dilation and topical medication before needing to do some other sore of intervention (placing a stent in his vocal cords which was our last resort).

It was around this time that Luca switched to a new food. It’s the same brand with more calories. For whatever reason this really upset Luca’s stomach causing him to puke almost every single feed he was getting. We tried mixing in more and more water, giving him smaller doses more time per day, and even tried switching back to his old food. Nothing was helping him stop puking and he was starting to lose weight. This was particularly concerning because of the weight gain requirements to have his procedure done. After 2 whole days of keeping nothing down at all, we were concerned enough to bring him into his pediatrician. His pediatrician was pretty sure it was nothing other than switching over to his new food, and potentially getting a bug, but he said that this was a sign of heart failure. We were certain this was not the case as we had just seen his cardiologist the week prior, however out of an abundance of caution we decided to bring Luca back down to Mayo where he was admitted on the March 19th. They determined that Luca had contracted rhinoviruses once again, and that they wanted to keep him there until he was able to keep feeds in again. We ended up staying for 2 days until being discharged. Once we got home Luca kept most of his feeds down, but was still puking about once a day. We switched him over to a new brand of food which made the puking go away immediately.

Luca had another airway procedure on March 28th. The plan was to complete another dilation and put another round of Mytomycin C on the vocal cords. This time it was just Luca and myself who went down leaving Carson and Bridge at home. They took Luca back, but because he had been sick the prior week, they found that his airway was still swollen and it was not the right time for dilation. It was at this point that she felt that it might be best to stop doing this procedure and go with inserting a stent in his airway as she didn’t see much improvement from the first two rounds of dliation and topical medication. This was not ideal as it is much more invasive and would require Luca to stay a couple days in the ICU.

We had Luca’s last airway procedure on May 13th. This procedure was supposed to be to place the stent in Luca’s vocal cords to keep them open. They also wanted to tie this surgery into getting one of Luca’s thumbs repaired. It’s been a procedure that we have been dreading, but we felt that now was as good of a time as ever to have this repair done. The thumb procedure was to remove the extra bone in his thumb, which is a pretty minor and easy procedure other than him having to have a full arm cast on for a full month. The surgery was slotted to last about 3 hours, and during this time while we were waiting, we went to find the room that we were planning on staying in for a few nights in the ICU and met back up with several of the nurses and care team that Luca had during his stay back in December. We got to introduce Carson to many of them that had seen Bridge when she was pregnant. It was about and hour and a half after the procedure started that we got the message saying that the procedure was coming to a close. This was about half the time we were slotted for. We were unsure if this was good or bad news, however upon leaving the unit to meet up with the surgeons we ran into the doctor that performed the surgery on his airway. She let us know that everything in his airway looked better than it ever had and that she didn’t feel like that was anything left for her to do. This was some of the best surprise news we had ever gotten as he did not have to have the stent placed. This means that as we sit, Luca’s airways is ready to have his trach out, and all he needs it to pass a sleep study. We already had to cancel one of these studies as he was not tolerating being on his cap while sleeping as much as we would have hoped, however we are all in good spirits that getting his trach out is right around the corner.

Luca is back to his normal, joyful self once again. We were unsure as to how he would do with his cast, as it is quite heavy and on his right arm (dominant hand). Just like everything he has taken this new challenge head on and is thriving. Bath times are not as much fun as they used to be, but it is fun banging the cast on doors, windows and cabinets as it makes loud noises and gets everyone attention. Everyone in our house is becoming accustomed to being smacked upside the head every now and again. The cast is slated to come off on June 7th, the day before his birthday.

We have no set plans for his next airway evaluation, but will continue to keep everyone posted via Caring Bridge. Thanks for bearing with us on the long post 😊

As always, we appreciate everyone’s endless love, support and prayers for both Luca and our family. We love you all!

Love,

The Raehsler Crew