Our Latest Visit to C.H.O.P. // 02/06/19
Balloons were displayed all over the Main Atrium in celebration of Heart Month!
I never quite know how I’m going to feel when I make my way down to Philadelphia to visit Jacob’s cardiologist at the Children’s Hospital of Philadelphia. This visit was no different. Sometimes I find myself feeling excited-feeling a sense of relief and gratitude for the way CHOP helped save Jacob’s life. Other times, I’m left feeling sad and overwhelmed. Unfortunately, this latest visit left me feeling the latter.
It may have been due to the fact that the visit started out with a stay at the lovely Holiday Inn in Cherry Hill, NJ (*cue holidae in by Chingy). It’s relatively close to CHOP and they offer a discount to CHOP families. Because Jacob’s appointment was at 7:30 in the morning, I decided it would be best to stay the night so as to avoid waking up at an unhealthy hour at home to make it to the appointment in time. Fortunately, my father was able to watch my older children and so it was just Jacob and I that stayed overnight.
Maybe it was because I was alone and that allowed me to get lost in my head, but I found myself recalling the first night I stayed at the Holiday Inn back in July when Jacob was still inpatient. I was terrified to leave Jacob alone for the first time, but we were no longer able to stay at the hospital overnight. That same day we planned to stay at the Holiday Inn was the day a previous “pod mate” had passed away. It left me feeling all kinds of emotions and I ended up being awoken by a terrible nightmare that night. It felt so incredibly real. I woke up crying and terrified and couldn’t fall back asleep. I needed to call the hospital to make sure Jacob was alright. Fortunately, he was ok, but staying at the hotel last night brought me back to that moment.
Sometimes when I think of CHOP, I think of all the miracles they perform. And then sometimes I think of CHOP, and I think about how many children must die in that hospital every day. I see the OR nurses in their scrubs and caps and I think about what awful surgeries they must have to be a part of every day-surgeries that might not always go as planned. Having experience working in an assisted living facility exposed me to death on numerous occasions, but there is something very different when a child dies.
As I waited for Jacob to have his height, weight, blood pressure and pulse ox checked, I couldn’t help but notice a girl, probably 4 or 5-years-old, in a wheel chair with a feeding tube, breathing tube, etc. She had it all. I looked at her parents, who had a nurse alongside, and found myself on the verge of tears. Sometimes it’s easy to accept that life is full of difficulties and that it makes us a stronger person, but other times it just seems so damn unfair. I sat there thanking God that he spared me from a life of taking care of such a special needs child. I don’t think I’d be able to do it. But I’m sure special needs parents will say the same, and they find a way.
When it was time for his echo, I was again reminded that one of these days he will most likely have an echo that is less than favorable. I hope and pray it never happens, or at the very least it happens when he’s an adult and the advancements are in his favor. How long can a parachute mitral valve function properly before it hardens or causes issues? That is the million dollar question. Will he run into heart problems in his 50s and 60s? Will he be like his Pop Pop who hikes every day, but finds himself exhausted and unable to live the life he desires? Is life really about us and what we want anyway?
After the echo, Jacob needed blood work to be done. I know it’s only a pinch, but it’s hard knowing your son has had so many “pinches” already and will only continue to need them as he gets older. But he’s going to get older. I need to remind myself of that. There was a time we didn’t think we’d see him get older.
Then after the blood work, we finally got to see the magnificent cardiologist, Dr. Chitra Ravishankar. She has been with Jacob since Day 1. We were told by numerous nurses during Jacob’s stay that she was one of the best. If you ever find yourself in the CICU at CHOP, ask for Ravishankar-she may even play you a song (just kidding. different Ravi Shankar).
She informed me that Jacob’s echo results looked great and that we could discontinue all of his medications except two of them! I instantly felt a weight lifted off of my shoulders. My goal has always been to discontinue his medications and his feeding tube by his first birthday and we’re certainly making large strides to get there.
Unfortunately, it can't be all good news. My concern going into this appointment was Jacob’s weight gain/loss. Ultimately, he has gained weight which is good, but he has dipped back down into the 3rd percentile. His doctors do not feel that he needs his feeding tube reinserted at this time, thank God, but they are still slightly concerned. The comment I received was, “This brings me back to my question from the beginning: “What is the cause?” And unfortunately, we don’t know. Every test has been done that we could do. From a cardiac stand point he’s doing great. Why he isn’t gaining weight, though, I don’t know”. We were given a list of high calorie/high fat foods and we’re encouraged to give him those as frequently as possible. I will also be looking into some different formulas that he enjoys so we can get those extra calories in as well. We still have some time to increase his weight, but I’m afraid what they might say if he hasn’t gone up at all before his next appointment in 3 months.
And once again, I’m back in my feelings and wishing that we had known about all of these problems before birth. Maybe he would have gone in to have his holes repaired and been home after a week without any weight loss. Jacob’s two-year-old brother is a beast and I often think about what it will be like for Jacob to have this big, older brother who has no fear. Will he feel small and inadequate next to him, constantly comparing himself to his fearless brother?
I really don’t think of these things all that often, but a trip to CHOP certainly brings it all to the forefront of my mind.
As I got ready to make the 2.5 hour drive home, I met briefly with a mom who is part of a Facebook group I’m in for other heart moms. Her son has HLHS (please look it up) and he is struggling right now after a recent surgery. I won’t go into their details, but once again I felt such sadness for her as I heard of his struggles. I couldn’t help but think back to all the times we feared for Jacob’s life-how exhausting it is mentally and physically.
Being back at CHOP just reminds me that life is so short. Outside of CHOP, it’s so easy to forget everything that Jacob went through and everything that all the inpatient kids are going through at this very moment. In some ways, I appreciate the heightened sense of awareness. In a way, it allows me to come back to the place it all started and process my feelings. Even as I’m typing this, I’m becoming more aware of how beneficial today’s visit became. What started as a heavy feeling is ultimately ending on the feeling of gratefulness.
So I made that drive home and enjoyed a thought-provoking podcast that challenged and encouraged me. It was the perfect listen after a long day in my thoughts. I got home feeling like my mind was thoroughly spent and my body yearning for a restful sleep. But here I am at 11:30pm at night typing up my thoughts because I can’t go to bed without getting them all out.
Be Good. Be Wild.
Xoxo Rachel