Searching For Solid Footing

I couldn’t think of a better name for this post. This has been a full week of just trying to keep up with the stress and anxiety that challenge our family’s life on a regular basis.

Today, November 4th, 20012, I should have been running my 4th marathon in New York City. I didn’t make it there. But let me back up a week…

Sunday, October 28th, 2012

Last weekend I was making final preparations to run the ING New York City Marathon. I had been training for this marathon for just over 4 months having gained a spot with an international travel partner. Some of you may know that the NYC Marathon is really challenging to get into. There are 47,000 spots and people all over the world vie to scoop one up to run in this prestigious and exciting race. Two of my running partners had pre-qualified last fall and a third had also gained an entry early last spring. My spot was last-minute in August, and I was so excited to be going to run in NYC, one of the most incredible marathon experiences a runner can have.

Those of you who know me, know that running is my rock. It is my touchstone that in the face of daily stress and unpredictability, keeps regularity, pattern, and predictability in my life. It gives me an outlet for negativity, an opportunity to feel well, the opportunity to focus on something besides Kate’s health and diagnosis. Marathon running started off as a very specific challenge to myself to qualify for the Boston Marathon (2011), and now it has turned into a passion to run the big 5 marathons of the world: Boston (check), NYC (tbd), Chicago, London and Berlin.

I was packed and ready to go and carefully nursing a mild case of plantar fasciitis (which can be runners nightmare), hoping that the small fascia at the bottom of my right foot would not ruin my NYC Marathon experience and readjusting my race expectations to be sure I would finish the marathon.  Then the news about a hurricane off the eastern seaboard started to be talked about quite seriously. The ‘superstorm’ was pushing its way toward NYC and there was a high level of anticipation that it would wreak a certain amount of havoc not only for NYC, but for international athletes trying to get flights into NYC. For our small group of runners, there was worry that the high winds predicted for mid-week would cause flight delays and affect travel plans. We really had no idea what was to come.

Tuesday, November 30th, 2012

Hurricane Sandy – the ‘Frankenstorm’ – the ‘Superstorm’ – hit the US Eastern Seaboard, and more specifically New York City  Tuesday morning.  Despite the predictions for the impact of the storm, and the emergency of flooding, power outages, fuel shortages etc. that the city officials, and Governor of New York State, were anticipating, the officials of the New York Road Runners were reassuring in their certainty that the New York City Marathon would go ahead as planned.

I was packed and ready to go, and later that afternoon I took Kate to the park to enjoy some time outside. I had picked her up early from her respite preschool program as she had not been feeling well – she was lethargic, fatigued and had a low-grade temperature…

That night, the true effects of the superstorm were televised by incredible visuals on the late evening news.  Kate was developing her own ‘superstorm’ in her little body, and we started medication at home to try to avert an episode of cyclical vomiting plus syndrome. That night I knew that the ‘solid footing’ of my planned week was slowly becoming very shaky.

Wednesday, October 31st, 2012

It is Hallowe’en. I haven’t yet bought candy because I typically leave that to the last-minute so I don’t devour it all before I can efficiently hand it off to the kiddos at the door and get it out of my house.

I haven’t yet completed Jack’s costume assembling, though all the essential parts are ready to go. He’s agreed to be the Wolf to Kate’s Little Red Riding Hood. (Mind you he plans to be a werewolf since a wolf is not nearly scary enough). I am going to be the Grandma of the story and have a whole act ready to go with it. But by 9 a.m. I know I won’t be trick or treating, and neither will Kate. Instead I make the phone call to CHEO. Kate has been vomiting since the early morning. She can barely lift her head, and is grey and pale. Her medications are not helping to avert a full episode and after the big scare we had in September, I am not waiting to take her to the hospital.

Kate and I arrived to the Medical Day Unit of the children’s hospital at 10 a.m. and Kate was immediately assessed for IV hydration and medication. She seemed alert and calm, and I truly thought she would only need IV hydration for the day to help her get past a ‘full blown’ episode. By early afternoon, Kate was clearly not improving. Her heart rate was climbing and she was tachycardic with a low blood pressure. Because what little that is known of Kate’s rare form of mitochondrial disease includes cardiac complications for most of the children, Kate was immediately scheduled for a 12 lead EKG and an echocardiogram. Fortunately both were clear and normal, though Kate’s heart rate continued to climb. By 3 p.m. it was decided she needed to be admitted to hospital.

The next several hours in hospital were very stressful. Kate continued to have a heart rate will into the 135+ range. She was clearly not well, nauseous and uncomfortable. She had been given IV bolus and her usual medication to try to control her cyclical vomiting.

I called my running partners to let them know I would not be on the flight with them to NYC the next morning. Even after the devastating effects of Sandy, the marathon was going ahead as planned, and was being touted as an opportunity to help New Yorkers celebrate the positive about their city. Registered runners were encouraged to get to NYC to run the marathon despite Sandy’s devastation. Hopeful that Kate’s health would improve, I asked my travel agent to find me the latest flight she could on Saturday before the marathon. She booked me on a flight for 1:45 p.m.

That evening, Brian stayed with Kate and I slept fitfully at home with my little werewolf who had a successful Hallowe’en thanks to our amazing friends and community. There was really no sleep as I was worrying constantly about Kate’s elevated heart rate, blood pressure and pain. I slept with my cell phone in my hand and checked the clock throughout the night for the morning hour when I could head back to the hospital.

Thursday, November 1st, 2012

6 a.m. Flight to NYC via Toronto

I arrived at the hospital early Thursday morning, Kate was still not well but had an ok night. She continued to have an irregular temperature – normal one hour and elevated slightly the next – she was clearly uncomfortable and very pale. Her bloodwork had come back showing dehydration and acidosis, but otherwise fine.  Her heart rate was still 135+.

The day continued in this way – Kate sleeping a lot and when she was not sleeping she looked in pain and sad. I tried to keep her entertained with books and pictures. I sang to her and stroked her leg. I offered to hold her, but she did not want to be touched or moved. Any change in position seemed to pain her.

Kate’s complex care pediatrician came to assess her around noon, and we were both pleasantly surprised that Kate seemed more alert, with better color and much more interaction. She sat up and was playful and giggling, all signs that she typically shows when she is coming out of an episode – though her heart rate was still high. Dr.M and I discussed Kate going home on a pass that evening if she started to eat and drink. I felt like we were moving in the right direction.

30 minutes after Dr.M saw Kate, Kate became suddenly very pale, quiet and clearly distressed. I thought she may have fatigued herself from her sudden burst of energy, and I closed the curtains and shut out the lights to let her rest. Kate did fall asleep but it was not a restful sleep. She grimaced, she writhed in pain, and her heart rate began to accelerate even more to 155+. She spiked a high fever and I at which point I asked for Dr.M to be paged. When she arrived, she was clearly concerned about the sudden change in Kate’s status and ordered immediate bloodwork, we both agreed Kate was in pain. Because Kate doesn’t have many words, she can’t accurately report when she hurts. However, she knew we were trying to help and she did her best to ‘tell’ us where her pain was.

I have to take a moment here and tell you how her pain makes me feel. To try to have you understand what it is like to have a 5-year-old who can’t tell you where she hurts. To not be able to take her pain away. That even when you know your child best, to not understand where it hurts, you feel helpless.

Kate has had pain episodes like this before. The worst was in February 2009 when she was just over 2 years old. That episode was the first time we heard the non-specific term ‘inflammatory cascade’, which is basically the best medical description doctors have for ‘the body has gone haywire’. During that episode Kate’s heart rate was between 180 and 200 for close to 3 days. As the doctors struggled to help her with a disease that was affecting her body so harshly but couldn’t be diagnosed, they stumbled across a drug called gabapentin, a medication previously used in seizures which was now used to treat neuropathic pain. It worked, and slowly Kate began to recover. It was gabapentin we used this week to help Kate get through her most recent episode.

Friday, November 2nd, 2012

Kate started to feel better by midday on Friday. Gabapentin is not an immediate acting drug, and it takes a while to work – typically 24 hours. As the drug took effect on Kate’s body, her heart rate and fever began to resolve and become more regular. Kate started to sit up, her pain appeared better, she started to eat and drink. She wanted to play.

We have an excellent coordination of complex care team that take care of Kate when she is unwell. They have developed an effective and efficient plan for treating her episodes and in the span of 7 weeks, they have dealt with 2 very different episodes with 2 very different complications – acute hypoglycemia and pain. We trust them, and have to rely on them. But at the same time, I never let anything sway me from my vigilance when Kate is hospital and the knowledge that I am her ‘safe keeper’ while we are there and during her slow recovery when we arrive home.

I withdrew from the NYC Marathon that morning. I felt good about the decision considering the incredible chaos and devastation in NYC. More importantly, there was no way I was leaving Kate. She was not ready.

Late that evening, Kate came home from CHEO on a hospital pass. We use these often with Kate when she is recovering from an episode. We are very fortunate to live close to the hospital, and as a team, we know that once Kate is stable her recovery is better if done at home. The pass status gives us the opportunity to quickly access medical care if it is needed, rather than having to re-enter hospital through the emergency department.

Saturday, November 3rd, 2012

Kate remained home on pass Saturday. She was still not well, but she was taking her gabapentin and other medications orally. We kept her day quiet, got her out into fresh air in her stroller and ensured she had a nap – late that afternoon I removed her IV which had been heparinized and locked in case it needed to be accessed again. I called CHEO and told them we would be staying home and Kate was discharged.

It has been a challenging weekend. Emotionally exhausting and physically stressful. Kate will need a lot of recovery time and we will have to be day-to-day in selecting what activities and how much she can participate in each day. We will need to be watchful with her and ensure her delicate energy levels are not drained.

As for me. I’ve booked hotel rooms for the Boston Marathon in 2013.

On Friday, November 2nd the ING New York City Marathon was officially cancelled due to public backlash in the wake of the superstorm that so seriously impacted the city and surrounding area. I have heard since that international runners (such as myself) may be offered a spot to run in 2013.

If I have Solid Footing next November, I will be there.

 

Julie

 

 

 

 

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