Long Overdue

Oh boy. We certainly have some catching up to do since my last post on Grant's blog was from February! Oops! We have had some big things happening around here... Mr. Grant turned three way back in March. He had a Curious George party with his grandparents and made us all laugh.

Grant got a little brother in May. He wasn't really very pleased to have him here, but after a few weeks of refusing to acknowledge that baby Miles even existed, he had a change of heart. Grant asks daily when Miles will be big enough to play toys with Grant.

We have really enjoyed summer. Grant has had many trips to the zoo, the pool, the park, playdates, and general summer fun. Kyle has been working tons of hours at work and going to school for his MBA in the evenings, so we thoroughly enjoyed the 8 weeks he had off this summer. School starts again next week and Grant and I will both be going through some serious withdrawal.

Grant got to play with cousins and hammed it up for this little impromptu Easter Sunday morning pose. We had to keep him occupied while the Easter bunny threw down a few extra eggs!

This was Grant after he determined he won the grandchildren's division of the Easter egg hunt. So funny.

Our family went to be with Kyle's brother on his wedding day in June and got a great updated photo of our family of four. Grant was exhausted from travel and so this was the most animated picture we got. :)

Now... onto the medical life update. Grant is doing exceptionally well. His oxygen saturations are around 92 on room air and his energy level is great. He is eating well, sleeping well (knock on wood!), playing hard, and continuing to grow and develop. He still meets with his speech therapist weekly and his physical therapist every other week. He is close to being caught up on his expressive communication and still struggles with a few consonant sounds which seems to be due to the fact that trying to make a hard "k", "g", "w", and a few others really triggers his gag reflex. Grant works with his speech therapist on continual feeding issues. Even though he is not tube fed and eats all his calories by mouth, he still struggles with many textures and has an extremely overactive gag reflex which causes his to throw up frequently when eating and can cause him to panic when he cannot clear food off his tongue. He seems to take two steps forward and one step back in feeding, but at least he continues to move in the right direction and I am not quite as panicked to have him eat snacks at someone else's house when I am not right there to make sure he doesn't end up choking or aspirating.

Grant had a cardiology checkup the day after Cory's wedding (it happened to by my birthday and never again will I schedule anything related to the hospital on my birthday! It was the worst clinic day ever and that plus my post delivery hormones made for a disastrous day!!). He was scheduled for his first ever unsedated  echo and it didn't go as planned. We really needed to get a clear picture of what was happening in his heart and determine if his fenestration had closed off yet (one year post Fontan) and despite being incredibly prepared with a backpack full of treats, movies, new toys, books, etc. the little man panicked and refused to cooperate. It is completely HEARTBREAKING as a parent to watch your child so incredibly scared over absolutely nothing. Grant is clearly traumatized the second that anyone comes near him in a hospital setting. The echo tech just needed to place 3 harmless EKG lead stickers on his chest and Grant had the scariest tantrum we have ever experienced. He was terrified and in end, I was sobbing trying to restrain him/calm him down and we had to cancel the whole ordeal. Our cardiologist was pretty concerned about Grant because he has had several cardiac episodes in the last few months where something will trigger his gag reflex and he will start to cough, puke, and then not recover. His heart rate slows down dramatically and sometimes he stops breathing and turns gray. It is totally scary, but at the same time, it is also something that Grant has done since he was a baby. Dr. Williams was concerned that these episodes were recurring arrhythmias and so we had to cancel more of the fun we had planned for our SLC week to come back and put him under sedation the following day (and make him fast on vacation... NOT FUN!) to get a clear echo. We left that afternoon with a 24 hour holter monitor on Grant to test the electrical impulses in his heart and see if we could catch any rhythm problems. Dr. Williams really scared me because he consulted immediately with the rhythm specialist at PCMC while we were there and they both determined that we would likely need to put Grant back under for a pacemaker surgery or a long term event monitor. This further put me into tears because that was not the news I was hoping to get.

We came back the next day and turned in the holter monitor. It had some good readings on there and luckily, it showed no rhythm abnormalities (which I knew it wouldn't since Grant had not had one of his scary episodes). After sedating him for his echo, they got some great images and discovered that his fenestration (the hole in his conduit from the Fontan) was still open. I was afraid that they would want to go in and close it (which would be done in the cath lab) but Dr. Williams said we could just keep an eye on it and Grant's amazing sats were probably due to really low pressures in his heart which is favorable for him. We may have to head to the cath lab to close it eventually, but since it is not causing any problems, we will just leave it be. Grant's tricuspid valve has some mild regurgitation that they will continue to keep an eye on, but his heart's "squeeze" was great and his function was good. We also spent a lot of time visiting about Grant's scary collapsing episodes and I again reiterated that I felt that it was not related to the electrical system in his heart, but rather to his gag reflex triggering a Vegal Response (that nasty Vegus nerve that can cause vomiting and a very slow erratic heartbeat when triggered.... partially thought to be the cause of all of Grant's coding episodes when he was a baby).  For now, Dr. Williams agreed with us and decided to put a pacemaker on the back burner (phew!) as long as we agree to race to the nearest hospital the next time Grant collapses for an immediate EKG to see if they can catch any rhythms. The problem with it being Vegus nerve related is that there is not a real fix for desensitizing the Vegus nerve. Medications have some pretty horrible side effects and so we will likely just have to continue to do what we do... watch and wait. Ugh. His heart episodes are enough to make my heart skip a few beats and it makes me pretty nervous to send him off to pre school and playdates!

For now, we continue to count our blessings and be grateful for every minute we have with our kiddos. Grant continues to grow and learn and I really do think that he will be totally caught up in his physical abilities and his communication by the time he is ready for Kindergarten. Now school is the next issue we have to decide what to do with. Grant has qualified for the school district's developmental preschool and they would come pick him up with the bus and everything. However, I am terrified of the germ issue in that sort of setting and I just can't seem to bring myself to make a decision yet. Thankfully we have opted out for now and can change our minds, so for the time being, Grant and I will continue our at home "mom school" and worry about the rest another day. Thanks for continuing to follow our little miracle man. I will try to make sure our next post isn't another 7 months away!