Wednesday, April 30, 2014

May every sunrise hold more promise, and every sunset hold more peace.

May every sunrise hold more promise, and every sunset hold more peace.

As we make goals for Brent he just keeps achieving them one after another. We’ve had several appointments these past months and a lot of changes have been made for Brent. There’s no other way to say it in that Brent is kicking some major butt coming off the vent. Two weeks ago they took his pressure support down from 12 to 9. The docs are looking at the notes today for the past two weeks and tomorrow will hopefully give us the go ahead to take the pressure support away completely and he’ll just be on c-pap. Once he’s on c-pap they’ll wean it until he’s completely off! They said if all goes well Brent should be off his vent by JUNE!! We’re in the process of scheduling a sleep study for Brent which the pulmonary docs need to clear him. He spends all day off his vent and going to appointments he’s just on his trach nose, no vent needed! It’s only been 5 months and Brent has gone from pretty high vent settings to almost completely off. He truly is a champion; he does all the work himselfJ

We met with his Cardiologist back in March. Going to that appointment we were so nervous. Not for the fact that we thought anything was wrong with his heart- we’ve had no issues at all with his heart rate or oxygen sats. But his heart has been this issue for Brent where basically everything has stemmed from and it’s been awhile since it was checked. Where his surgeon left it with us last time he said that he left a hole open in between 2 chambers of his heart to help relieve pressure coming out of open heart surgery. If it didn’t close on its own they may have to go in a close it. Well Brent did so wonderful at healing that the hole closed by itself. His truncal valve was mildly leaky before and it’s just the same, no change (if this does start to leak more they have to replace the valve which is a more extensive surgery meaning more time on the heart lung bypss so we’re gonna stay positive and hope that he’ll never need this done). His conduit piece that they put in looks good, this is the piece that’ll need replaced as he grows but we should be good for another 2-3 years. His pulmonary arteries have completely opened up from the scarring from the temporary banding in the beginning giving him a chance to recover (I know his surgeon was beyond excited to hear about that). All in all his heart is doing perfect! His cardiologist actually said the word PERFECT! She said see you in 6, I said okay six weeks, I’ll just go ahead and schedule the appointment now and she said “No, Angie 6 months!!” I almost started crying. The relief that my heart felt realizing Brent successfully made it through this with such strength gives us hopes that our little superhero can make it through everything else. We walked out of that office with all smiles!

We heard from the Children’s bone marrow transplant team about the HLA typing to see if me, Brent or Lila were matches for Brent and they came back negative for all 3 of us. This is okay; there was only a 30% chance that any of us would match. I believe they’ve found 1 donor match through the national bone marrow database and they’re setting up a second. It’s good to have a back-up plan, with Brent we need to be ready for anything but my heart is telling me we’re not going to need this path. Brent’s on a mission and he will make it down to Duke for his thymus transplant.

We also heard from Duke; they are so excited about Brent’s success in the past months and are patiently waiting for him. They’re starting the insurance clearance in VA for the transplant for Brent. Immunology is already starting to work on their paperwork to send down to the docs too. It's not official yet but they said we could possibly be at Duke come July or August!!!!!!!!

Brent has really shown a lot of curiosity lately with everything, I LOVE it!! Anything thing he can get his hands on he’s putting it in his mouth which is awesome. He’s got lots of things to play with too being a special lil guy- trach collar tube & wire, pulse ox, feeding tube extension etc. haha He thinks he’s funny & has a smile on his face when I catch him chewing on any of them. He’s really starting to roll around a lot too. I turn by back for 10 secs and turn around to him on the floor trying to get his knees up under him. He’s showing us he’s not going to let a few tubes stop him from being on the go!

We’re still continuing the process of having all his docs clear him for the transplant. He just recently had a brain MRI done. It’ll be interesting to see what parts of his brain were actually damaged from his level 4 brain bleed. He doesn’t show any signs of this affecting him as of yet- which is amazing & we are absolutely thankful for that. It really shows how extraordinary the human body is. He was so young at the time (10 days old) when the bleeding went into the ventricles of his brain and his brain was able to re-route itself from the parts that were damaged. Brent’s also part of a cardiac brain study where they did a fetal brain MRI, a MRI after birth and the 3rd MRI to be done after heart surgery. They’re studying how the brain changes through each step. The pictures are amazing. We had one side profile shot of Brent when we had the fetal MRI done, it was the only picture we have of his face for the whole pregnancy. He always had his hands in his face or tucked behind me when we did the 3D pics. He couldn’t hide from an MRI through;)

We’ve also had about 11 liver blood test done and an abdominal ultrasound to make sure that his elevated liver enzymes are not because of an autoimmune disorder etc- which all test are coming back good so far. GI doc said he is cleared on a liver standpoint! Another one down!! GO BRENT!

As I’ve said before Brent does have kidney failure. We meet with the renal docs in May so they can give us a recent explanation of his kidney function and opinion on the recovery. We’re always going to be optimistic on the recovery of them, it may take years but he’ll get there. The kidney failure should not hold Brent back from his thymus transplant but it’s something that will definitely need to be monitored closely.

We meet with his ENT docs in May as well so they can check out his trach site & clear him for that. We’ll also discuss airway reconstruction but we were recently told that because of how Brent’s anatomy is they won’t do anything with his airway until he’s completely off the vent (same as thymus transplant). So with this being said Brent will travel to Duke with a trach and airway will come later down the road. We’re not sure how much later but the risks associated with the extensive hospital stay and the chance of getting an infection is just too high. We need to play it safe with Brent because with him just the slightest cold or infection could take his life.

Hope is the thing with feathers that perches in the soul and sings the tune-without the words & never stops at all.
-Emily Dickerson

Brent gives all of us a hope to hold onto and without hope the future is impossible. He is loved & admired where ever he goes. My husband & I have our days where we feel just completely drained and overwhelmed. On occasion I think of how different things would have been if Brent was completely healthy; thinking of where we would be and what we would be doing. We had plans as a family before we found out about Brent’s complications with buying a house etc. Most of the time those thoughts are a blur because this is how things were meant to be. He’s made us the people that we were always destined to be. Our sweet girl Lila has endured way more than any 4 year old should but is coming out of this experience stronger. She is the most hopeful and has always had big plans for her little brother since the first time she saw him. She never once questioned if her brother would get off machines. She’s always said “when he does”. I love her so much for that. It breaks my heart when I think that this experience has taken a bit of her childhood away. She did have to grow up a little faster this past year but we’re doing everything possible for her to hold on to that. We make special time for her and include her in any way that we can.

For what it’s worth; it’s never too late to be whoever you want to be. I hope you live a life you’re proud of, and if you find that you’re not, I hope you have the strength to start over.
-F. Scott Fitzgerald

We are all so excited for what the next few months have in store for us. We want to thank everyone for your positive vibes & prayers- it’s what gets us through the day and onto the next. We couldn’t do this without all the support from our friends & family. It’s amazing that such a sweet little boy can really bring people together. It brings happiness to us that our friends are going out of their way to create a benefit for Brent & to see how much people want to help our family out. It’s the random acts of kindness that we’ve seen that has really touched our hearts. You never truly know what it’s like to go through something so extreme like this until you have to face it. There’s nothing that can prepare you for the ride but love can get you through. Love can get you through anything. I’ve become an eternal optimist and because of Brent I’ll never let go of that<3

“To love is to risk not being loved in return. To hope is to risk pain. To try is to risk failure. But risk must be taken because the greatest hazard in life is to risk nothing.” -Bob Marley