Saturday, July 19, 2014


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

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

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

Saturday, January 4, 2014

Our Quest to Duke...

"Every heart that has beat strongly & cheerfully has left a hopeful impulse behind it in the world."

It’s been several weeks since we found out about Brent’s lack of t-cells and that he’s going to need a Thymus Transplant or alternative Bone Marrow Transplant. So far things at home have been going okay…we try and keep him in a bubble as much as we can but it’s hard. He’s a baby and needs to have the one on one contact and be kissed, cuddled & loved on. I don’t want to look back and have any regrets but at the same time we have to protect him.

We ended up having to go back to Children’s for a week (right before Christmas) due to dehydration & an infection. There is really no way of us getting around a trach infection. We all have bacteria on our skin and since Brent has an open hole to his body, bacteria will get in there unfortunately. We just have to keep an especially close eye on him and don’t let a single change go unnoticed.

His Immunology doctors have been great. I learned that Brent is a mystery medically speaking. It’s rare for a child with DiGeorge & no t-cells to have a trach too. They still don’t have an explanation as to why he was born with a small airway- it’s not the typical side effect that is associated with DiGeorge or his heart condition. I also learned that Brent may be a candidate for what’s called a combination transplant which is the Thymus transplant & Parathyroid transplant. With the parathyroid- Brent has a blood calcium deficiency (due to the complete DiGeorge syndrome) that the endocrinologists have yet to really get a good hold of. He’s at risk of bone diseases & seizures (which we’ve already had the last time we came home) with this deficiency, so it would be amazing to be able to correct it to where he can produce his own calcium instead of taking meds for it. The Parathyroid transplant is very new & just like the Thymus transplant it’s all clinical research. Duke started both of these transplants and it has a 71% of success. Those odds are better than the alternative Bone Marrow Transplant which has a less than 50% because he would have to go through Chemotherapy etc. So within the next few months it’s either Thymus or Bone marrow transplant. Infants with complete DiGeorge, like Brent, usually don’t live past the age of 2; the fatality isn't just due to the lack of t-cells/ immunosuppressant, it’s also the hypocalcaemia that takes part in it. If this interests you here is the clinical trial website that has a lot of information on it:

A few days ago we heard from Duke since we’re getting close to that 6 month mark. They have a protocol now for children who are eligible for the transplant- none of them can be on a ventilator. Dr. Markert said that she doesn't mind the tracheostomy but children that were on a vent going into the transplant, none of them had good outcomes. I wouldn't say this is a huge set back for Brent but it’s definitely going to require some hard work on his part. He’s always been on a vent with pressure support. He does all his own breathing which is good but the pressure support is what makes him get the best breath possible when he does take a breath himself … His settings aren't high, they’re more moderate I’d say, and the other week we did get him off oxygen which is awesome, that’s step one!! I have no doubt that Brent can do this; it may just take some time though. Again, I look at time as a friend & enemy…I pray that we can keep him virus and infection free until it’s his time. I've learned with Brent that it’s take one huge step forward and a few baby steps back. He’s never been by the book either so who knows it may be sooner than we think. All we can do is go with the flow and let whatever is going to happen unfold…

We've started to work on the Bone Marrow transplant referral and getting things all set up for it as our back up plan. If he does need it we want to possibly have a donor in place because it'll be an emergency and things will have to happen quickly. He's already been tested to check his HLA type. They say siblings are the best match. I pray that we'll never have to make a decision that I can't even fathom thinking about...

Brent is such a happy baby though; he smiles all day long and LOVES kisses. We can’t hear his sweet baby laugh but I know he does, I can see it. He has a personality that make you fall in love with him instantly. Every single day is a gift with him. When we go back and think about our life before, a part of it was empty without him. I know that Brent has some serious life threatening things going on, and if I broke down my usual day for you you’d probably think I would have had a mental breakdown by now. Sometimes I think that I’m a little crazy since I haven’t, but I honestly wouldn't change it for the world. I wouldn't change a single thing about him. It’s what makes him, him. I love and admire his strength and his ability to be happy through all of this. It really makes you put your own life and so called “problems” into perspective. Life is too valuable to dwell on all the bad negative stuff. I've seen first hand what the power of love can do. It can pull a soul out of the depths, and it can sometimes give you time.

I believe with all my heart that Brent can get through his next journey, not saying it’s going to be a walk in the park, but I know that he’s going to that exception. He’s already proved it before. Looking back at his heart surgery, it was one small step in his life & he’s recovered so well from it. ENT mentioned a couple weeks back that they were thinking about reconstructing his airway in May or June. It surprised me because initially they were saying between a year and year in a half of age. Obviously the airway reconstruction surgery & vocal cord surgery are last on our list of important procedures to do; first we have to tackle the transplants and see how he recovers from it. My husband & I started to learn sign language just in case it’s put off for awhile so that he’ll be able to communicate with us.

I love to see him & our daughter interacting. They adore one another and I wish it was different in that sense where she could do more big sister things. It breaks my heart to have to send her out of his room and keep her at bay sometimes but risking him getting sick just isn’t worth it. When we’re at the hospital getting labs or at the pediatrician we literally have him in a bubble. We took one of those weather covers for travel systems and we use it whenever we’re out.  Brent is the healthiest looking sick kid ever, you’d never know.

It’s hard to find hope in situations like this especially getting slammed with one major thing after another. I've come to find hope in our love as a family. It’s what gets us through one day to another.

Friday, November 22, 2013

Our superhero's journey continued...

On the 17th of October we got ready and actually left the hospital to go home!  Brent slept the entire time from when we left his hospital room until he got into his room at home. We went home by ambulance, thank goodness for because my husband & I would have had a panic attack the whole ride to Fredericksburg. I rode with him in the ambulance, his respiratory therapist & Brent followed us. It was crazy busy when we actually got into the house. They were setting up all of his equipment, sorting through boxes and boxes of supplies, explaining how to work certain things-it was an absolute blur by the time everyone left. Our insurance provided 16 hours of Private Duty Nursing. We had a day nurse from 7am to 3pm then a night nurse from 10pm to 6am. We had an awesome day nurse but she only worked M-F and our night nurse we had to let go because she had NO TRACH experience. **Any nurses out there if you truly want to help families in a time of need please go into Home Care.** For the last 6 days we were at home Brent & I did it ourselves. It was hard trying to balance time for him with his cares and also with our
daughter. It seriously the hardest part about this-it’s not mine & my husband’s feelings, it’s our 4 year old daughter who wants nothing more than to have her family together.

 It felt good to have him home, in his own room, seeing Lila being able to lay and cuddle with him. But there was always that thought in the back of our minds that this wasn’t for long- he still has a very sick heart.  It was not a comforting thought thinking what if something happened, would we have time to get to his docs?! It was a sickening feeling to be exact. The second Saturday we were home, it’s hard to explain but I had a Momma feeling- something was not right. His oxygen saturation's were fluctuating way too much. I called his Cardiology doctor and he said Brent needed to get up there. We had no choice but to bring him to Mary Wash Hospital first. They arranged a helicopter to pick Brent up and bring him to Children’s. I was invited to ride with them- it was a beautiful ride. It was at night and the whole city was lit up! Wish it was under different circumstances to take my first helicopter ride but I was grateful I got to be with him. He looked at me for half the time- making sure I wasn’t going anywhere. He looked like a baby Eskimo all bundled up. He fell asleep for the second half- there was no match against those vibrations!  When we got to Children’s everyone was happy but not happy to see us. It was a mutual feeling. 

At first everyone was saying that he had a virus but after watching him for a few days his saturation's were not getting better. The doctors decided that he needed a cardiac cauterization done to see how his heart was holding up with his temporary fix. After discussing it with his surgeon they decided that the cath wasn’t the best choice for Brent because of his already known kidney failure. They didn’t want to risk his kidney’s taking a hit from the dye they use in the cath because if they did have to do his surgery they want his kidneys as healthy as they can be for the bypass machine. They settled for a cardiac MRI. They got him all prepped for the MRI, took him down for about 4-5ish hours. We waited patiently for 24 hours for the results of the MRI. They found out that Brent already outgrew this temporary PA banding fix! Wow…it totally shocked us because we were preparing ourselves to go back home and wait another month or two. We had to switch gears to surgery mode. I dreaded this day for so long. Not the fact that he was getting his heart fix, I was so happy about that, it’s just such a serious surgery and with his history it scared the life out of us. We were just given the chance to enjoy him, I couldn’t handle it if something bad happened.

Well he was presented on the board in conference that Monday and we found out Tuesday he was having his heart surgery on Wednesday. Talk about not having time to panic! It was good though because I would have dissected every aspect & instead we got to take the night and snuggle, kiss and cuddle our sweet boy.  They took him down to the OR bright & early at 7:30am. It was the absolute longest day of our entire lives. We just roamed the entire hospital waiting for our pager to go off with the next update from the OR. Brent was on the heart lung bypass for about 5 hours. He required a bit for blood transfusions than normal but handled the bypass very well.

We got the page that he was off bypass and doing fine. We waited for his heart surgeon to come out of the OR. I’ll never forget the smile he had walking out of there. He was so happy with Brent’s heart surgery and said it went better than he expected. Those are words of a miracle coming from a surgeon and we couldn’t have been more relieved. I felt like I could finally breathe again. I don’t know if I sub consciously hold my breath whenever they’re doing something to Brent but I felt my chest expand and my heart could finally beat again. Our worst fear was over and our son was off to recovery.

He looked really scary coming back from the OR. He was pale as a ghost and there were at least 5 people in his room working super fast. We decided to step away and let them get him stable. Once we came back it was like flashback from before. He had his open chest, on his blood pressure meds, pain meds. We both had mentally prepared ourselves for the worst again. We handled it once, we could do it again. I felt in a much better place than before, we knew what to expect. Well Brent decided to just bust out with his superhero powers and get off of all his meds in 5 days and get his chest closed 3 days after surgery! We were so proud of our lil man. He was doing just absolutely great!

We headed home that following weekend to prepare for his homecoming. They were talking about him coming home just two weeks after his surgery. Everyone was so impressed with Brent and how he was doing. We brought up t all his home equipment to take him home with. We were so excited! We finally got through his heart surgery and were on the path of recovery. Our daughter was so happy that she was going to have her brother home with a fixed heart and she could get the big sister that she had been waiting so patiently to be!
Everything was going smoothly for a change and we were so thankful. We were actually going to have our boy home for Thanksgiving. We had so much to be thankful for this year, it was such a blessing. The day before we were planning on going home they tried Brent on his home vent and he did not tolerate it. We were crushed. We knew that this would set us back a few days but maybe he just needed a little more time. Again he was only 2 weeks out of surgery.

We got a visit from the Immunologist at Children’s that same day (Monday). They had recently done a test to see how Brent’s T-cells (which are an essential part of your immune system) were doing. It crushes my mind, body & soul to have to say that our sweet boy has encountered another mountain to climb. He is the extremely rare 1% of children with DiGeorge syndrome who completely lack T-cells (that fight infections). He has what they call "complete DiGeorge". My heart hurts so much to think that our beautiful baby boy is so sick.You'd never know it...he's so perfect you guys...I want more than anything for him to be healthy. Brent needs a Thymus Transplant as soon as possible. They're available on a research basis at Duke University in North Carolina and the disease he has was completely fetal until this transplant. We are currently waiting to hear back from Duke to see if they’ll accept him as a candidate for this. I pray with every ounce of my being that he will make it through this.

I feel like we take a huge step forward and 10 steps back. Everything about this journey has tested our faith, tested our faith in everything. I want to be able to accept what our son has to go through so I need an answer to why this is happening to him. The only thing that I can come up with his that Brent’s purpose in life is to teach. Teach all of these doctors and help them learn; help them save other children’s lives in the future. I hold on like hell to the fact he wouldn’t have been given this life if he wasn’t strong enough to live it. I know our son will move mountains one day. He will make it through all this, he has to.

As parents we are having to face the sorrows that no parent should ever have to face. We have to look them head on and have no choice but to accept them. Brent has made us better people. We are more understanding and appreciative of life. All we can do is stay positive and let those vibes come back to us and be there for our son and love him as much as we can.