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.