Growth Takes Time

This past week marks 8 weeks since June 13th, the day this adventure kicked off. 8 weeks of living out of duffel bags in a hospital. 8 weeks of being away from home. 8 weeks of doctors, nurses, therapists, IV teams, diagnostic tests, anesthesia, and bells and whistles at all hours of the day and night. 8 weeks of an emotional, mental, and physical rollercoaster. 8 weeks of watching our son and his tiny body endure much more than people do in a lifetime. 8 weeks of incredible outpouring of love, support, prayers, healing vibes, gifts, and coffee (so much coffee). 8 weeks of growth. So much growth! Growth that did not come free and yet, is priceless. Let us catch you up on some of the highlights and provide a small update to the tentative plan of action.

On June 13, Gavin was admitted to the Children’s Hospital of Philadelphia (CHOP) for the first of two surgeries that would hopefully straighten his spine and alleviate the pressure on his spinal cord. Surgery #1 was the halo placement. Surgery #2 was the spinal fusion. The halo placement was a fairly short procedure (roughly three hours), but it took Gavin several days before he started acting like himself again (we counted three days without a smile). Gavin was confused and scared. He was constantly asking for us to take his new “hat” off. The screws on his halo were tightened. We were told that the pin tightening did not cause pain, but older kids have explained that it feels “strange”. It was analogized as having a dental procedure done after the numbing – you feel something, but it’s not an acute pain. Then the halo was attached to the weighted traction pulley system. The starting weight was 5lbs with a goal of 10lbs (30% of his body weight) within 2 weeks. This caused increased pain, muscles spasms and general discomfort. Gavin was given some good muscle relaxants and pain meds to keep him comfortable.

June 15th: Day 2 was a good day!! Gavin had his first PT session. Her goal was to see him roll from side to side in bed. Gavin exceeded her expectations and then some. He was able to sit up in bed, sit up in his wheelchair, and go to the playroom… all while in traction! He actually cried when we convinced him that after 6 hours he had to get back into bed. His strength, determination, and personality had already begun to make some big impressions on his care team.

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June 16th: Day 3 was another great day. Gavin had quickly learned that life in traction is better than life before traction. He was able to move his body in ways he never could before. He was able to play with some other children in his new favorite place: The Playroom. He also got to celebrate Father’s Day with Dad and Poppy. We even got a few smiles and laughs today!

June 17th: Day 4 was the first of many trips to diagnostic imaging. Gavin was able to lay completely still (with the help of both Greg and I) for a CT of his entire spine. The CT was crucial for surgical planning for surgery #2. They built a 3D model of Gavin’s spine in order to discuss and prepare for the best possible fusion options. They also sent the CT image to a company that made a “Firefly”, which is a surgical navigational guide. This told the surgeons exactly where to place screws and rods. I know I can be a medical nerd, but this stuff is just amazing to me…. But not as amazing as Gavman!

Gavin spent the majority of his time awake in his wheelchair or standing. This allowed gravity to better assist the traction. Thus far, everyone was thrilled with his improvements and he was enjoying his new found ease of movement. He continued to make progress in therapy as well. We brought his climbing harness to provide a little extra lift while walking the halls. He also practiced sitting and using both hands at the same time. Before traction, Gavin would have to support his head with a shoulder, locking that arm into place and making it difficult to use. He also focused on standing and keeping his legs from getting too atrophied. We were so fortunate to have found another fantastic therapy team that is willing to think outside the box, and more importantly, let Gavin show us what he is truly capable of.

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On Wednesday, June 26th (Day 13) we met with Gavin’s surgeons to discuss the plan for the upcoming spinal fusion. While a lot of specifics would be a game time decision, they believed the rods/fusing will need to start and end higher than previously discussed. Beginning at the base of his skull and ending near T4 with “growing” rods extending to T10. That meant that he will have no movement in his neck, but allow for greater long-term growth and development of his lungs.

July 8th: Day 25: Gavin has been having X-rays done on an at least weekly basis. Because of the dramatic positive changes, the docs decided to do another sedated CT today in order to solidify their plan of attack for Thursday, July 11th (the original date of the spinal fusion). Gavin was a trooper with sedation! He quickly returned to his room and promptly asked his Papa to watch trains. Later in the afternoon, the two surgeons came to discuss the surgery one last time. They admitted that Gavin’s case is very complicated and extremely risky. And even though the surgery has the potential to increase the quality of Gavin’s life, it also has the chance to do the opposite. They gave us another opportunity to change our minds. Through the tears, we reminded them why we started this journey in the first place. Gavin deserves the chance to try. To try to regain function and strength. To try to beat the odds like he has done so many times before.

July 9th: Day 26: Dr. Cahill (orthopedic surgeon) dropped by to show us the CT from yesterday. He showed us a side by side comparison of the CT’s performed just three weeks apart from each other. We have never shared what Gavin’s spine looked like publicly, but with results like these, I would feel selfish not sharing. I’ll never forget hearing Dr. Cahill saying, “It showed incredible changes. This will make a huge difference in the OR.” The happiest tears were shed as I stared at that screen. It was visual proof that we made the right decision.

July 10th: Day 27: That morning, Gavin spiked a fever over 103 but remained in stable condition. He was in a pretty good mood and making all of us laugh. They called a “CAT call” on Gavin, which stands for “Critical Assessment Team”. The PICU team sends a large team to the patient’s room to help the primary team make the best calls for the situation at hand. Quite quickly, Gavin had an IV placed, labs drawn, medication administered to bring his fever down, and a chest x-ray. The only abnormal result was an elevated WBC (white blood cell – which can indicate an infection). Later that afternoon, Dr. Cahill and Dr. Kennedy came by to discuss these complications. They were concerned that there could be an infection in Gavin’s spinal cord fluid or brain, such as meningitis. They wanted him started on two hefty IV antibiotics as soon as possible and to get a spinal tap to test the spinal cord fluid for infection. We were transferred to the PICU later that evening. Surgery #2 had been cancelled. Which felt like a huge blow to Gavin’s progress. It took the wind out of our sails. We knew there would be complications given the complexity of Gavin’s case. It’s nearly impossible to be in a hospital, for a month, without catching something. The timing of the infection/fever was disappointing it truly was a minor setback. Relative to everything else he faces, this infection was easy to treat.

July 11th: Day 28: It was a long night in the PICU, but as always, Gavin handled it like a champ. All the tests, including the spinal tap came back clean. Which was both good and bad news. Because it meant that they could not stop searching until they found the cause. So off to the OR Gavin went. The plan was to place a PICC line (preparing for long term IV antibiotics), remove the halo, do an MRI, and re-install the halo. They wanted to rule out any infection that may be in the brain or cerebral spinal fluid. Which seemed like it had already been ruled out. However, with the hope that surgery #2 could still be done at some point, they needed to be absolutely sure they were not going to be placing hardware in a body that was under attack. Which placed a higher risk of his body rejecting the hardware.

Later that evening we received some great news! The six hours in the OR could not have gone better. Gavin’s procedures all went well and it was determined that the source of the fever was a rhinovirus. The surgeons consulted with the Infectious Disease team and decided that surgery #2 would only be delayed by one week. That meant another seven days of traction and therapy to get stronger.

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July 18th: Day 35: Spinal Fusion Surgery Day: Walking down the hallways to the pre-op area never gets easier. The internal struggle is unreal. Being strong and brave for my little boy who knows all too well what these hallways mean. Wanting to cry for him, but remaining as calm and peaceful as I possible can. Literally handing over my first born son and knowing that I have no control once he passes through those double doors. Trusting that the surgeons have prepared enough and know exactly, down to a fraction of a millimeter, how to perform this intense yet delicate surgery.

Gavin was brought back to the OR at 0918. Our first call to update us was at 1250: the first incision was made at 1150 and all was going well. Next call was at 1500: still doing great, surgery will be another 4-5 hours. Third call was at 1710: vitals are stable, he’s doing well, surgery is going “slow and steady”. We spoke to Dr. Kennedy on the phone at 1900. We spoke to Dr. Cahill in person at 2015. 

The day went better than anyone thought it could. It was a big win. What was accomplished was “at the intersection of what is possible and what is not.” The fusion starts at the base of his skull and ends at T3. They were able to place growth rods from T3-T9. This is going to allow a good amount of growth long term. The decompression of the spinal cord went well. We won’t know how much function he gets back for some time, but it was a huge success.

As we thanked the docs through our joyous tears, we said, “we know you guys do this everyday, but we are forever grateful…” Dr. Cahill interrupted with, “I don’t do THIS everyday. This was one of, if not, the most complex case.” 

While Gavin was far from out of the woods, we celebrated that night and slept like we haven’t slept in years. We knew that the hard part had truly just begun.

July 21st: Day 38: Gavin continued to make steady progress since he came out of OR. He was weaned off of medication and came off the ventilator. Hour by hour we were seeing more of his personality shine as he became less sedated. A few nurses caught a glare or eye roll when “messing with” his lines. He was not shy about telling people where the door was, either.

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July 27th: Day 44: Gavin spent the early part of the week recovering and getting more comfortable in his new fuzzy Viking vest and halo combo. This will be his new normal for the next 3 to 6 months in order to let the spinal fusion set. PT and OT started ramping back up and both were once per day. His therapy sessions were very productive and Gavin’s grit was back on full display. He started sitting without support, standing, and even taking supported steps. While seemingly small, learning to do all of this again are milestones to celebrate. His balance is significantly different now that he has the halo brace and decreased mobility in his neck. 

July 29th: Day 46: Discharged from CHOP. Transfer to Penn State Hershey Rehab. During his 3 to 4 week stay at the rehab hospital, Gavin will be focusing on regaining strength, balance, and function. Gavin has already given us a glimpse at what he is capable of with his new hardware, so we are very excited to see where the next few weeks will take him.

Gavin is now two weeks into his inpatient rehabilitation stay. He is doing very well – working hard and making progress everyday. Per usual, his grit, charm, and work ethic has made fans of the care team. He has learned that his body is capable of so much more than he is used to. He is a big fan of the new movement he has and even has some new dance moves to prove it.

We know that the work is far from over. In fact, there is a very good chance that in a few months when the halo vest comes off, Gavin will have another inpatient rehab stay because he will need to re-learn all the things we are working on now, just without the halo. But if the last 8 weeks have shown us anything, it is that the body is an incredible tool. A tool that is capable of indescribable heartache, overwhelming joy, immeasurable growth, and tremendous strength.

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, “I have lived through this horror. I can take the next thing that comes along. You must do the thing you think you cannot do.

– Eleanor Roosevelt

Thank you again for all your love and support. Please be sure to follow us on Facebook and Instagram for brief updates, adorable pics and videos of Gavin’s amazing progress.