Saturday, February 22, 2014

Make way for a positive day

We are so proud of Brent, he's really starting to develop a personality & hit milestones. They evaluated him and he’s about 2 months behind but is improving every single day. (you have to remember he spent more time in the CICU than at home x2) He’s now holding his head up on his own, grabbing at everything & tracking so well! Oh & he's teething too! We've hit 6 months old already! Wow what a ride it's been. Brent smiles all day long. Kisses, smooches from froggy & a your own smile will make him smile. I love that he's such a happy baby:)

 With high feelings of hope comes a reality check to keep us on our toes. The past few weeks have been smooth riding up until the end of January. We had one of the most terrifying experiences that I think a parent could ever go through. (we thought we’d been through it all)

Brent stopped breathing late night/early morning one night; turned pale white, blue lips, unconscious and when you lifted his arm it fell right back down, no control. My heart has never felt so much panic before, EVER. At this moment in time we were so far away from any of Brent's docs.  We took a deep breath & recalled every step that our trach nurse drilled into our heads at the hospital. We went through & practiced for situations exactly like this one. First we suctioned; got his normal secretions back & no resistance. (of course we thought clogged trach) Brent immediately grabbed the baby’s ambo bag attached to an oxygen tank and started bagging Brent as hard as he could; he was looking for the chest rise which he started to get. His color immediately started to come back. ( come to find out from the docs, what Brent did saved his life that night)

While he was bagging I called 911. Once the team got to the house I remember my mouth being so dry. I’m trying to answer questions and explain Brent but all that was going through my head was “this can’t be happening”. My husband & I were in control of everything.  The medical people took one look at Brent and immediately could see that we knew Brent the best & how to handle him out of any EMT that was there. I scooped baby Brent into my arms and my heart began breaking, literally breaking inside my chest. It was the most awful feeling to pick up my limp, unconscious baby, all I wanted to do was keep him safe & protect him. I bagged him while carrying him to the ambulance & prayed that he didn't go too long without oxygen to his brain.

We got to the hospital and the flight team was called. My husband & I decided to change Brent’s trach out. As soon as we began all we could see was blood coming out of his stoma. This is NOT normal at all. His old trach had blood clotted all through it which was blocking his airway. We suctioned him and were pulling out bright red blood; something was bleeding inside of him.

We flew to Children’s, I sat shotgun this time in the helicopter. It was a bit nerve wracking that I wasn't back there with Brent but I just prayed the entire flight.

ENT scoped Brent when we got to Children’s found out that his trach rubs against his trachea and just rubbed so much that it popped a blood vessel which is where the bleeding was coming from & made a clot below his trach. We made a negative a positive though by lowering his vent settings during out 24 hour stay! (which he is tolerating very well!) We also got the go ahead to put him on a trach nose & trach collar and be completely off the vent! GO BRENT!

We left Children’s the next day which was Sunday, shortest trip ever for us!! It felt good to bring him homeJ  The next couple of days were hectic for us because Brent ran a fever for 4 hours on that following Monday so we almost had to go back to DC. He was put on a new antibiotic for his fever episode and I didn't know it at the time but it makes the stool red. So on Tuesday we were back in the ER getting blood test ran on him. Luckily it was just due to his new antibiotic. That was my bad for not reading the pamphlet because it said that it was harmless on the second line! Oops won’t do that again…

February has been a busy month for us. Feb 7th-14th was CHD awareness week. I loved seeing all the support from friends & familyJ we also met with Children’s Bone Marrow Transplant team to discuss Brent’s future. Hubs, Lila & I all had blood tests done to see if any of us would be a good donor match for him. I’m hoping it’ll either be Brent or I because I don’t know what we’ll do if it’s Lila. There’s only a 30% chance that a family member will be a good match anyways. 70% of the time a stranger is the best match. I guess we’ll cross that bridge when we come to it. We’ll have the results in about a week or two.

During our meeting we asked every question under the sun. How sick would our son be? Very. Would he get Chemo or radiation? Chemo. How risking is Chemo with his already renal failure? Very risking. Will the bone marrow transplant (BMT) completely fix his immune system? No. Brent will never have a prefect immune system. How will the bone marrow be given to him? Infused through an IV line so his blood will absorb it. How long will we be in the hospital for this? Minimum of 5ish weeks. What's the success rating for Brent? They couldn't give us one.

We found out that the BMT is not the best path for Brent. His best chance is the Thymus transplant but even then Brent is at a VERY high risk of developing a Graft vs. Host situation with any transplant (BMT or Thymus). It’s scary but nothing can be done at that point. The BMT may or may not work for him. They’ve never seen an exact kid like Brent EVER. In the past 20 years there have been 2 BMT done to fix t-cells and even those 2 done weren’t completely lacking t-cells. It’s terrifying that we don’t have a success story to compare our son to.  Knowing Brent & how he fights he’ll be the example for any child born with these complications, he’ll show that there is great success after a tough fight.

We have a great team looking out for Brent; we have the transplant doc at Duke following & checking on him frequently, (he’s officially eligible age wise for the thymus transplant!!). We have our Immunology team at Children’s & a doctor at CHOP (Children’s Hospital of Philly- they have the largest DiGeorge Clinic in the country) who is also playing a role in Brent’s care.
Brent is tolerating up to 2 ½ hours straight off his vent, completely breathing on his own, no oxygen, nothing!!! I know he can do more because he’s sats are still perfect when I put him back on his vent but I don’t want to push him too hard. He does that a couple times a day & in the evening too while he’s sleeping a little bit! Watch out Duke- HERE WE COMEJ We have faith in our sweet boy. You look into his eyes and you can see him wanting to fight- you see the bravest of all souls. He truly is one of a kind.

Oh and Brent ate food for the first time on 2/17/14!! This is HUGE for him!!! He did awesome! It was a very tiny bit but still, no coughing, no choking just all SMILES! He loved it! It was organic pears, mango & papaya (obviously all mixed in one).

I wasn't thinking when I bought it at the store that he may be allergic to either one of those and it would be hard to see which because it’s mixed… but thankfully he wasn't! We first started with my finger than moved onto a spoon! We are so proud of him! Now he doesn't drink by mouth, he’s not a fan of the formula taste so he still eats through his g-tube but we’re working on it!

“Faith consists in believing when it is beyond the power of reason to believe.” Voltaire

I’m very thankful for my heart family that includes Brent’s doctors, nursing staff & the amazing heart families that we've met along the way.

Our sweet girl Lila just amazes us every single day. She is so strong when it comes to her baby brother. Every night when we pray at dinner she prays for Brent to be safe & get off his machines. She pretends her baby doll has a trach & a vent. The other day her baby doll "Rosa" practiced so much that she was finally healthy like her baby brother will be one day. It's so sweet to see her optimistic. She wants to be a doctor when she grows up to help other children like her brother. Sibling love is amazing.

Thank you for all the love & support from everyone. I've had a couple people reach out to me and it really touches my heart.

For my little Rasta baby- ( baby Brent LOVES reggae music, just like his Momma!!):

“You just can’t live the negative way, make way for a positive day.” Bob Marley<3