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.

Sunday, September 15, 2013

Baby Brent's Journey

Our pregnancy started off just like any other; Happiness just poured from my husband & I when we found out that we were expecting our second child on Christmas Eve. It was one of the best presents that we could have been blessed with. We could hardly contain our excitement when telling our families & friends. We had planned this pregnancy; knowing that we wanted at least 1 if not 2 more children. Our first, Lila, was a perfectly healthy, beautiful baby girl and we expected nothing more the second time around.

The beginning of July, more specifically July 3rd, was a day that I wish I could erase from my memory. We were sent to Children’s Hospital in DC to have an ecogram on our son’s heart. We had no suspicions whatsoever that something was or could be wrong. Man, were we completely blindsided. The doctors sat us down and broke the horrible news to us; our son was diagnosed with a severe, rare heart condition called Truncus Arteriosis. I can’t explain the pain, the worry and the fear that immediately engulfed my entire body. My stomach knotted up and I could feel my heart racing. I wanted to run out of there as fast as I could but we just sat there, crying, trying to understand what this exactly meant.  I couldn’t even look at my husband who was right by my side, I just held my belly in my arms, and thinking is this really happening? Why is this happening to our son? I wanted nothing more than to just wake up from a nightmare, but instead we continued to live in one. Little did we know that our son, Brent, Jr., would endure and have to overcome more than just a heart condition in his life journey, much, much more.

It was August 13th, my husband & I had come to terms with our son having a heart condition. We felt positive about it, we knew that if our son was like either one of us he was strong, he was a fighter and he would get through the open heart surgery, no problem. I was not “officially” on bed rest but I was 3cm dilated for about a week and pretty much 95-100% phased so the doctors wanted me to take it easy. The goal was to hold him in there as long as possible, where he was safe. I’d been having contractions but nothing that was alarming, nothing that brought me to know knees cussing by any means. Our plan was to have our son in Arlington that way he could be closer to DC minimizing his transport time to Children’s hospital after birth. We were terrified to have him in Fredericksburg or even worse on the side of 95 trying to get to Arlington, stuck in traffic. But that part worked out. At about midnight on August 14th I decided that I might be having contractions (like I said before, they weren’t that painful) and that we should drive to Arlington and check to see if I was dilated anymore. We made it there in record time! No traffic, just us and some crazy swerving tractor-trailers. By the time we arrived and got checked in I was 5cm dilated and 100% phased. They admitted me and I thought, awesome this is going to be a piece of cake! I’m already half way dilated and not really feeling a thing! I got an epidural and I was good to go. Our family came & my friend Chelsea. We all sat around for a while, I dosed in & out. My time finally came to push, and all that stuff went good pretty much by the book. When he came out he looked just like our daughter, I’ll never forget that. The docs got him cleaned up and we all noticed that he wasn’t breathing too well. They tried to intubate him but the tube came back out. They tried to force it in and it wasn’t working. They knew something was wrong so they took him away from us after holding him for two minutes. They got me settled into another room; I cleaned up and was persistent in asking when we could see our son. They finally let us down in the NICU. He looked puffy and blue. My heart just sank, my nerves kicked in and I was in panic mode. I immediately knew something was terribly wrong. His breathing was raspy and hit seemed that every breath he took he was excruciating painful. There was nothing I could do but kiss, rub and sing to help calm him down. I felt completely helpless. The doctors said Children’s Hospital was on their way to carry him by helicopter back to their facility. They came and picked him up, the flight nurse said she’d call me once they landed and he was safely with the doctors. She kept to her word; we got a called from her about 2 hours later saying he had a safe flight and said the doctors would be calling us soon. Our plan initially was to say at the Arlington hospital until morning. My doctor said I had to wait at least 12 hours before he would discharge me, which would have been 3:00 a.m. We were going to wait until the doctors rounded in the morning and head out. Well I’ve learned many times in the past couple of months that things don’t always go the way you planned.

We got a phone call from the doctors at Children’s Hospital. I’ll never forget my husband’s face listening intently to the doctor on the other line. He lost all color in his face and all I could see was fear. He put him on speaker at the exact moment for me to hear “we are not sure your son is going to make it, we need your permission to do anything we can to save his life”. Not the words you want to hear when your baby was just born 5 hours ago and you’re not even in the same hospital that he is. I hit the floor, my heart seemed to weigh about a thousand pounds and my body couldn’t take the weight of it. The tears flowed down my face, feeling like they were burning my skin off, my heart raced, my entire body shook. I screamed almost in sync with my husband “do whatever you need to, just save our son”. After peeling myself off the floor and still crying hysterically I called for the nurse. I asked her what I needed to do to leave the hospital. Of course my doctor was not going to sign off on a discharge almost 6 hours after having birth, so I knew that wasn’t an option. She brought me the paperwork and a bag full of supplies I would need. I signed the paper and we ran out of the hospital. The drive to DC was the longest drive of my life. We were both silent, not sure what to say. I mean what do you say when you’re terrified to the point where you physically can’t talk, there are no words. Finally when we were able to say something all was said was that he has to be fine, we repeated it over and over again, as if somehow that would make it true. We ran into Children’s hospital and they sent us to the CICU (Cardiac Intensive Care Unit). The receptionist told us our son was still in the operating room and a doctor would be up as soon as they could. We tried to lay on the couches and tried to rest but there was no resting, our minds were racing, thinking about every possible outcome. At this point it just hit me that my legs and back were still numb from the epidural, but none of that mattered. I didn’t care if they stayed numb for the rest of my life, as long as my baby boy was okay. Finally a doctor came up and explained everything.

When he was born they could not get the breathing tube down his airway, the doctor tried to force it in but it kept coming out. None of the doctors knew it at the time but our son was born with a very abnormally small airway, which was why the tube wouldn’t go down. While forcing the tube down the doctor tore a hole in his throat. With the hole, every breath he took was letting air into his body. By the time he got to the Children’s Hospital he was swollen up like a balloon. The doctors inserted chest tubes to release the air trapped in his body. The doctor referred to him looking like Fat Bastard in the movie Austin Powers, that’s how swollen and full of air he was. With the air beginning to be released they turned their focus on his airway. They had a do an emergency tracheotomy, to create a main airway for him. In the end this saved his life. It’s very rare for a newborn to have a trache day one of their life, but our son would soon prove to everyone that he was very special indeed. He had 5 doctors sweating in the OR that night, a night I’m sure they would not soon forget. Finally he was stable and we got to see him. The relief of seeing him breathing, seeing him with my own eyes that he was alive and so beautiful was a huge weight lifter. I felt like I could breathe again like I had been holding my breath this entire time. We weren’t sure what this meant for his heart surgery, but I got the feeling it may produce more complications. Over the next few days, we met more people than I ever wanted to and learned A LOT.

ENT docs wanted to put a scope down his stoma site for the trache and check out his small airway. It was a huge mystery to everyone as to what was blocking the airway. His airway was so small they had trouble fitting their 2.7mm scope down (which is the smallest they have). The results came back with them saying he indeed had a very abnormally small airway and within the airway there was a flap of what they thought to be cartilage. They also found that he had a laceration most likely caused by the trauma at birth (with the tube) and with the laceration his true and his false vocal cords were damaged. They told us they couldn’t do anything to heal the laceration or the vocal cord damage and that it would just have to heal itself in time. They also told us for them to fix his small airway it would require complete reconstruction surgery. They wouldn’t be able to do this surgery until after he successfully healed from his heart surgery. So again, we will be patiently waiting for that.

With a trache he doesn’t make a sound which is the worst thing about it. I want nothing more than to hear my child scream & cry as weird as that sounds. There is a slight chance he may never talk, laugh or make any sounds at all because of the vocal cord damage. Even when they do remove the trache and do the reconstructive surgery he still may not be able to make a noise. Only time will tell with that one. So mommies out there feel blessed to hear your child cry and at 4am. Even though you’re exhausted and you just want your baby to hush and go back to sleep, remember there are moms out there who would die to hear their child cry, me being one of them. Never forget that beautiful sound.

So at this point we have the trache and the heart that needs repaired and a future airway reconstructive surgery planned. His heart surgery was scheduled for the next Wednesday. He was doing so well; his heart was hanging in there. With his specific heart condition, Truncus, the lungs eventually get too much blood from the heart and begin to get saturated which leaves the rest of the body with not enough blood to function. The doctors were monitoring this but you can’t control everything. The Saturday before his scheduled heart repair his entire body system crashed, kidneys, liver, stomach etc. In a blink of an eye, we began living in our worst nightmare again. Everything happened so quickly. He began to puke up a brown liquid which I later learned was acid that your body produces, his body was trying to give us a sign like “hey something’s not right, I’m not doing so well”. Well point taken. Before we knew it he was in multi organ failure. We had already come so close to losing our son once, and that feeling swept over me again. The next few days were horrifying. He was on so much support he wasn’t doing anything himself. I can’t tell you how many times my husband & I went to our car and just cried. Sobbing & hysterically crying, letting it all out. This seemed to be the best way for us to handle the type of emotions we were experiencing, feelings that no parent should ever have to go through. In attempt to explain it; it’s a different type of pain that directly affects your heart and soul, as if a piece of you was missing and was being tortured with you being able to feel everything but you’re not able to do anything about it which was extremely exhausting & painful. I seriously wouldn’t be here today if it weren’t for my husband who is my rock, my knight in shining armor. I know that sounds so cliché but it’s nothing short of the truth. He’s the only other person who knows exactly what I’m going through and how I feel. He accepts me at my weakest moment and lifts me up to pull me through. Vice versa, I’d do the same for him too. At this point we could see it in the doctors and nurses eyes, he wasn’t doing well. The doctors sat us down and explained how worried they were about him, how serious his condition was. He was by far the sickest kid in the CICU. We knew and understood everything that was happening and came to terms with accepting any fate but we knew in our hearts that he would make it through. I’ve never been the praying type but I prayed. I prayed to everyone and everything. I prayed so hard, begging and pleading for our son to pull through this. He had to; there wasn’t another choice that we were willing to accept.

His heart surgeon told us that something needed to be done to help his heart out temporarily because his complete surgery was out of the question right now. He decided to cut open his chest and place PA bands on his arteries to slow the blood flow to his lungs from his heart. He explained there was a risk of injuring the arteries with the bands but it was much less of a risk than the odds of him making it through his heart surgery (which were slim to none). The heart lung bypass machine is not one to take a chance with when you’re playing with such short odds. We respect the heart surgeon and we will agree with anything he thinks is right. Who are we to question someone when I couldn’t tell you the first thing about a heart a few days ago and he fixes them and saves lives for a living!  Once they opened his chest they could not get it closed because of his fluid overload state. Since he was in kidney failure he retained all the fluid, so the doctors decided to leave his chest open and to put in an emergency peritoneal dialysis catheter and start dialysis immediately. It was another surgery our son had to go through and thank goodness we had the director of the surgery department come put it in. Inserting the catheter was risky because of his state but there was nothing else that could be done, this was it our only chance. With his swollenness from being fluid overloaded it was restricting the blood flow to his organs and was putting a lot of pressure on his lungs & heart. He was placed on 3 different blood pressure meds, a pacer, a ventilator and was kept heavily sedated for days. With his open chest you could see his heart beating through the window, I’d never seen anything like it. The infection risk was high with the trache, open chest & PD catheter but all of it was necessary. His chest was open for 12 days, which was unheard of in the CICU. When they finally closed it they had no struggle whatsoever which was a huge relief.

Now on top of all the near death experience’s we’ve encountered, something just as frightening was discovered as well. We knew that he had two small level 2 brain bleeds that the doctors said they were old, probably occurred from birth and it was nothing to really worry about. After his multi organ failure the neurologist unfortunately found a new level 4 brain bleed that was not just bleeding in the ventricles like the previous two but the bleeding went into the brain tissue which causes scarring. Level 4 is the largest brain bleed you can have and it does cause some damage. The damage done that we could tell was that our son was having seizures, they were lasting about 10 seconds a piece and there were many of them, back to back. Anything dealing with my son’s brain absolutely terrifies me. I can handle a heart issue, I can handle tracheostomy but the brain is a sensitive spot for me. It’s the motherboard of how your body functions. Luckily though, I’m told that infants can reconstruct their brains that no part is exactly set in stone yet. So, if part of his brain was damaged from the brain bleed he can actually make new connection and re-route it. I’m holding on like hell to that fact, and I know, I can feel when I look into his eyes he knows it me; he recognizes the sound of my husband and daughter when they talk to him. He’s on medicine to help with the seizures and only time will tell with how it affects him. They will do a brain MRI when he’s healthier but currently he’s very awake and aware and does good job at responding to stimulation which is a good sign.

I know this is a lot to take in, imagine having to live through it all. There are just a few more things. So with his heart condition there is a syndrome that goes hand in hand with it, it’s called DiGeorge syndrome. Our son was diagnosed with it which didn’t come as a surprise really, I kind of expected it. It affects his developmental state as he grows and it also affects him from the throat to the lower chest area. I’m not going to go into details about all that could result from this syndrome, because there are many possibilities and some children don’t even show effects. It just may take him longer to crawl or walk. He may need extra help with problem solving in school because it may not come as easily to him, or it could as far as affecting his swallowing or speech. We’ll see as time goes, and either way nothing will change the way we look at him. The doctors also think he may have a blood condition that’s in the same spectrum as DiGeorge. His platelet level is very low which means they have to keep giving him platelet transfusions which are what helps the blood clot. As to what this means for him future wise; he’ll just bruise easier and bleed a bit more than a regular child would but it won’t hold up his heart surgery.

Okay, so the plan is; get the fluid off as quickly as he can tolerate. As of today the dialysis has been running for almost 3 weeks, and the kidney doctors want to come down on the concentration of the fluid and cut back the time from 24 to 18 hours and see how he handles himself. He’s basically back to normal size, which is great to see. The doctors wanted him off of all blood pressure medicines, which as of yesterday he’s off of all three! He’s about half way down on his vent settings which they’re taking down slowly. He just started his feeds again of breast milk yesterday. So far he’s handling it well. We are taking baby steps, gotta go his speed. He’s definitely moving forward, getting closer to where they want him to be for his heart surgery. My prediction if he keeps at this pace of improvement that he’ll have his heart surgery in about 2 weeks, the beginning of October. Fingers crossed!!

I think I’ve covered all the basis. It’s lot to read and process. Some people think “oh my gosh, how are you guys getting through this?” And you know what I tell them, faith. I have faith in my son. He will dodge anything you throw at him, he is a fighter. He is going to live this beautiful life and he’ll know firsthand for what it means never take anything for granted. He will do something amazing with the life that he is given which he’s already done in more ways than one. He is the absolute strongest person I’ve ever met (grown-ups included). He is the true definition of a miracle.