Oh gosh where do I even start?! So much has happened in these past couple of months. I’ve been trying to write this blog post for about 3 weeks now. I keep getting pulled away because something comes up. Our weeks have been filled with various appointments and labs. Brent is really starting to progress a lot with his development tho. He’s started clapping, blowing kisses & pushing air out of his trach which is his version of talking! It’s amazing really because it takes a lot for him to push the air like that! He’s such a happy boy, he cracks up a lot and he’s always smiling (except during his bath and/or trach care, but hey can you blame him?!).
So where I left it last time we were about to see his ENT docs for the first time in a while. It came to a complete surprise to us to learn that Brent is known worldwide in the ENT world! Brent was discussed with some World Renowned ENT doctors from the United Kingdom as to what was going to be best plan for him to get through this major airway reconstructive surgery. Now at the beginning of all of this we had it in our heads that after his thymus transplant we would go into his airway surgery and by the age of two the surgeries would be over and we would just have the conduit replacement heart surgeries to do as he grows. Well ENT told us that they will not touch Brent’s airway until after his first conduit replacement heart surgery. This could be another 2-3 years depending on how fast he grows out of his conduit. They said it’s also going to depend on all the other systems of Brent’s body and how they’re working. They need Brent in top shape to be able to make it successfully through the airway reconstruction. So as of now the airway is put on the back burner and we turn our focus on the present.
We actually have to see ENT next week because of a growth that has appeared in Brent’s stoma. Last week it was causing bleeding during his trach change so ENT needs to look at it and see about removing it from his stoma. Not sure what caused it or really what it is- possibly and huge granuloma (which is the body’s natural way of closing an open hole). I just hope it’s something that they can take care of with no hospital stay. It took us by complete surprise and honestly freaked us out for a moment when we saw the blood. It’s situations like these we are grateful for our training and remembered the cardinal rule- just breathe.
Brent also picked up a trach infection this past week so we are treating it with another antibiotic in hopes it'll settle it. He's now taking 4 different antibiotics a day. I cannot wait to cut back on these after the thymus transplant and give his body a rest.
At the beginning of June, Brent went in to the hospital for an overnight stay to have a sleep study performed. Ugh it’s the most awful experience to see how miserable these kids are during the study. They have wires and leads all over their face, chest & head. He had a entitle up his nose which he despised the most. At one point he was getting so upset I was ready to pack up our stuff and leave haha good thing hubby was there to calm me down- teamwork;) anyways it took 4 weeks for the results to come back. His pulmonary doctor called giving us the news that Brent passed his sleep study and gave us the go ahead to take Brent of the C-PAP support! The results did show that he has mild to moderate sleep apnea but it’s something that should resolve itself in time. We weaned him little by little every night. **I’m so excited to tell everyone that Brent’s been sleeping on his trach collar for about 2 weeks with absolutely no support. This is the first time ever in his entire life sleeping with no support, doing it all himself! This is such a huge accomplishment. We couldn’t be more proud of him! This was the very last thing we were waiting on for the thymus transplant. We did some lab work to check on how he was doing at the beginning of the week, and I can say with a huge smile that his results came back good! He’s breathing in & exhaling perfectly. Keep it up sweet boy!
Brent’s doing such a great job respiratory wise but our little guy is having a seriously hard time gaining weight. He’s been 14 lbs for the past few months. He is slowly getting longer which is good. His blood calcium his been high for months so we’ve been adjusting his meds according to his labs. The kicker is that we cannot increase his feeds for him to gain weight with his calcium being high because it’ll increase it even more from the calcium in the formula. His most recent lab work showed that his calcium has finally come back down to normal so I’m going to hop on it and see about doing something for the little guy and get some more food into him.
We also met with his Nephrologist (kidney docs) about a month ago. I’d been dreading that appointment, not really knowing what to expect but just somewhere in my heart knew something and my mind just wouldn't acknowledge it. It absolutely crushes my heart & soul for me to share the bad news we get because I want to be nothing but positive for our sweet boy. The doctor said that Brent’s kidneys have, in fact, gotten smaller since September 2013. They measured at 5cm in September and 4.7cm recently. He’s diagnosed with Chronic Kidney Disease-Stage III. Both kidneys are working at 40%. The positive news out of this is that they are working well enough for him to be cleared by the doctor for his thymus transplant. At this time we’re not going to dwell on the fact that Brent will most likely need a kidney transplant in the future. As to when, we don’t know. When we got this news it took days to accept it. I still struggle from time to time and breakdown thinking about it. It’s our worst nightmare from the very beginning coming back to haunt us. Not that we’ll ever give up but it’s a process mentally; we feel & experience every emotion you would expect to from this but we try everything in our power to get into a positive state in which our sweet boy needs us to be in. We are all watching his kidneys closely and refuse to give up our faith that they can still possibly recover. Brent has proved many things wrong in the past and is living proof that miracles do happen. One thing at a time we've learned works best for us and for Brent. We’ll take it one day at a time and we’ll do it together.
To show just how small our world really is, we've been connected with a family who has a beautiful 3 year old girl who 2 years ago received a thymus transplant at Duke to help with her lack of t-cells from complete DiGeorge. Their sweet girl has other complications different from Brent, the two basically just share the lack of t-cells, but it’s given us a new found hope and to see the success that it’s brought this little girl and her family. It puts a smile on our faces and gives us something beautiful to look forward to. She’s able to go into public and play with her cousins and live a somewhat normal lifeJ Having a set of parents who can relate to us on a level that no one else can has been an absolute blessing. We spoke for a long time on the phone sharing stories. I got off the phone that first time & cried, thanking God for sending this family into our life because they've been the positive that we so desperately needed. They assured us that Duke was the right place for Brent and he will be in the very best care there. We want them to know we think of their sweet girl every day and they’re not in this journey alone. We look forward to the next step of our journey down there and thank God every day that our sweet Brent has hung on this long and that we’ll have many more years together with him.
When I think about Duke I look at the months coming up in the near future and September is right around the corner. Our LilaBug will be going into Kindergarten! AHHH! 5 years have flown by way too fast. She reminds me every day that she’s almost 6 haha (in like10 months). She of course still remains her positive little self and is our big helper with her baby brother. I love it when she catches him chewing on one of his chords or something and is like “No, no Brent. You can’t play with that. You can get seriously hurt. I’m just watching out for you.” Such a little Mama herselfJ We still worry about her every day and try our hardest to make sure we have special time with her. I cannot wait until our days slow down and we can live somewhat normal lives. I know she looks forward to those days as well; she has so many things she wants to show and do with her little brother. We keep those positive thoughts and dreams close to us and we’ll get there one day. Patience…
We've done everything on our end to get Brent ready for the transplant so now we're just waiting on a few clearances on a research basis on Duke's end. They are getting ready to present Brent to the BMT board at Duke, where all the doctors will discuss what is going to be the best treatment for him. This is a huge step so hopefully we'll hear something soon.
Our community has really shown us just how wonderful people are and how much we all care about one another. The Chive of VA had an event in honor of Brent in VA Beach at the beginning of June. We are so touched that they shared our Brent’s story and celebrated our son. It touches our hearts and we thank them so much!
Our friends created The Sunshine Event for Baby Brent that took place last Saturday 7/12/14 at the Fredericksburg Fairgrounds. All the amazing people who put it together and all the volunteers have a special place in our family’s heart. All the time & effort they have put into the event, it means the world to us. Whenever I tell someone about it, I tear up and get emotional because at the beginning of our journey we never felt so alone, which is the complete opposite of how we feel now. We’ve never felt more love and support for our family ever. I want everyone who has helped put these events together, everyone who donated auction items, money etc., everyone who came out for the events, and everyone who played a part in promoting the Sunshine Event to know that you’ve truly made a difference in our family’s life. This had been more than we could have ever dreamed of. To have our entire community pulling for our Brent, I mean the feeling is almost indescribable. You’ve all shown us that we’re never alone in any of this. We’re all here together. Thank you from the bottom of our hearts. Peace. Love. & lots of Hope.<3