Saturday, February 25, 2017

And, We're Home!

My boy is home!!!

After 28 days in the hospital, and well on his way to recovery, Brennen was discharged from the Janeway this past Thursday!

Though he is still having some pain and discomfort, he is also having lots of happy time and big bright smiles for everyone! It is hard to believe that the surgery is over. We were so anxious about it for so long, and now (hopefully) the worst is behind us.

The correction in Brennen's spine is incredible. He gained 5 inches in height, and he looks like a different child. His x-rays are shocking. As in, they literally took my breath away. The sight of all of that metal inside of his tiny little frame is really off-putting, but knowing the benefits he will gain from it makes us very hopeful.

He has been sitting up in his wheelchair, and is more comfortable now than he ever has been in this chair - even so soon post-op. He still has 58 staples in his back, which will be coming out on Tuesday. The incision is clean and long and will leave him with a serious scar to show what an unbelievably strong boy he is (in case anyone needed proof). His poor little body has been through so much, it breaks my heart, but he has handled it all like a champ!

Andrew and I are so happy to have our boy back where he belongs. The past several weeks have been tough on everyone, and we are happy to now be enjoying the comforts of home. We are looking forward to getting back to some sort of 'normal'. We are excited to be able to do fun things with Brennen again like we used to.. before he became too uncomfortable to tolerate any sort of activity. We are all more comfortable now. I am aware that he still has a ways to go to be fully recovered, but I cannot help but focus on the beauty of today and the amazing potential of tomorrow.

Thank you to Megan Nicole Art and Illustration for this beautiful drawing of our family - bags packed, headed home from the Janeway! It is so personal and thoughtful, and we absolutely adore it!! I can't wait for warmer temperatures to be able to get out and enjoy a picnic just like this!!

Thank you again to everyone who has been thinking of us and sending well wishes to our precious boy. We made it through a very challenging time thanks to the love and support of all of you! xo

Thursday, February 16, 2017

Spinal Fusion

On Tuesday, February 7th, Brennen underwent spinal fusion surgery.

Due to neuromuscular scoliosis (related to his cerebral palsy), Brennen had a severe curve in his spine that had progressed gradually over the past few years, and got significantly worse over the last couple of months. He has been in a tremendous amount of pain and discomfort (as I talked about HERE), to the point where he could no longer tolerate sitting or even lying down, and so we found ourselves at a point where the surgery was our only option. Having his spine fused will stop the progression of the curve and straighten his spine, which also helps to align his hips and pelvis, putting less stress on his internal organs.

Brennen has had surgeries in the past (ie. this one), and while I hesitate to say that it gets easier, it does become familiar. We checked into the Janeway again on Monday, February 6th (the day after his birthday), and geared ourselves up for surgery the following day.

We are fortunate to have developed a great relationship with many of the doctors, nurses and staff who have been looking after our boy for many years now. While this may be routine for them, they recognize that it is not the norm for us and they treated us with the upmost courtesy, respect and understanding. We were worried, but we knew we were in good hands.

The surgery went as well as could be expected. By the hands of highly skilled surgeons, Brennen's spine was fused from T3 to his pelvis. He had instrumentation (2 rods and 42 screws) attached directly to his vertebrae to support his spine. The procedure took six hours, and thankfully there were no complications. His bleeding was controlled, and while they had units of blood ready for him, he did not require a transfusion. Instead, he was able to get some of his own blood back via a "cell saver" (intraoperative cell salvage machine).

When we were able to see Brennen in the PICU, my heart crumbled. Even though I knew that the surgery was successful and he was going to be fine, I just can't come to terms with the fact that his little body has to go through so much because of his disability. I grieve each thing, each opportunity, each experience that has been stolen from him, and I grieve for the fact that I am not able to fulfill the most fundamental maternal instinct - to protect my child from pain and suffering. 

After the surgery, Brennen had a fair amount of bleeding, and was given a transfusion of plasma to help with clotting. He remained on a ventilator for breathing support, and he had an NG tube from his nose to his stomach for nutrition. He had IVs in both hands and an arterial line in his foot. He had a butterfly needle in his arm for subcutaneous morphine injections, and was monitored very closely for pain management. He spent a night in the Pediatric Intensive Care Unit before returning to our cozy room on J4 Surgery, where we are currently.

This lucky elephant was given to Brennen by a young boy we met in the hospital this week. While going through a difficult time himself, he showed such empathy and compassion for Brennen, and he really touched my heart. I truly believe that people come into your life for a reason. I was in need of a pick-me-up, and this one came at just the right time. Life can be painful in all sorts of ways, and it made me realize that while I would rather have an easy-breezy life, that is not realistic, nor would it be so rich and full. Thank you, Kaisen, for this special gift. You made a big impact on our whole family, and we will never forget your kindness. You have inspired us, and I hope that even in these challenging times, as we cultivate more love and light, life will be a bit easier for all of us. We hope to see you again!

Brennen had a couple of episodes of 'respiratory distress' shortly after the surgery, where his oxygen levels would drop and they had to call in back-up, but he has been doing relatively well in the days since. His pain is the biggest issue right now, and though he is on some heavy medications, he still has quite a bit of discomfort.

We are taking things day by day. We are seeing some improvements and feel encouraged by Brennen's overall disposition. Andrew and I are taking turns at the hospital so one of us is always with Brennen. The stress level is definitely high, but seeing him start to have increased periods of awake time with slightly less pain is keeping our hearts happy and our spirits up.

Brennen is amazing and he is fighting this with everything he's got. His resilience, determination, and courage are far greater than my own. Once again, he is teaching us what strength truly is and we are so inspired by our brave little boy.

Thank you all for your concern, prayers and love for our boy. 
We so appreciate your support and your positive thoughts for all of us.

Sunday, February 5, 2017

But first I will make you strong

My baby boy turns 12 years old today!

We spent the last ten days in the hospital, keeping Brennen comfortable with pain medication and going through all of the pre-op assessment and tests required before his surgery next week.

They did blood test after blood test to check his white blood cell count and hemoglobin levels. He had to be gradually weaned off of his seizure medication because it posed a bleeding risk for surgery, and he was started on a new one that seems to be working well with no negative effects, so far. We met with the anesthesiologist who will prepare him for the procedure, and the team from the PICU, who will be ready and waiting for him afterwards.

He had multiple x-rays and was injected with a radioactive dye for a bone scan in nuclear medicine. He had an echo-cardiogram as well as an EKG, which showed that his heart is good and strong (and full of love and life, which we already knew!)

We were able to take Brennen home for the weekend, to celebrate his birthday and to enjoy spending some quality time with him before his surgery. He will be readmitted on Monday, and surgery is scheduled for Tuesday.

Today we will celebrate our boy. Not with the biggest party or the most elaborate decorations, but by surrounding him with so much love that he never ever questions his place in this world. He will know that we are beyond overwhelmed with gratitude for the day that he was born, and he will feel how immense and deep the love of our family is for him.

We will hold him close and thank our lucky stars that he is here and he is ours. The next couple of weeks will be challenging, and Brennen will be in the fight of his life, but he is strong, and he will make it through. Brennen's disability has become second nature to us. It is a part of our lives that has become so intricately woven that it is impossible to separate from anything else, and we like it that way. We can handle it. But at times like this, the fear takes hold and brings back all of the feelings and emotions from when he was first diagnosed, and it's fucking terrifying.

My heart breaks because he has to go through this. The worry and sadness are suffocating at times, but I know that he is in the best of hands and will be back to himself before we know it. He needs this surgery, there is no question. He is extremely uncomfortable, and sitting has become impossible for him. The curve in his spine is severe, and poses a risk to his internal organs if left uncorrected, so we really have no other option.

I am so thankful to our family and friends who have been so supportive and helpful these past few weeks. I am thankful that we have so many people to count on and who are looking out for us right now, and I am thankful for my beautiful boy, who despite tough circumstances, still has a sparkle in his eye.

Happy Birthday, Brennen. I love you, I love you, I love you.

"You're gonna be happy," said life, "but first I will make you strong."