Nobody “nose” baseball like this kid!
I write this during a rare moment of calmness on the 10th day of being at Children’s Hospital in Madison with my 11 year old son, Nathan. This crazy journey started with something we love…baseball. It was just an ordinary Monday baseball practice…my husband and I both coach his Little League team. I watched in slow motion as Nathan went for an incredibly high fly ball, missed his footing due to a little dip in the ground and caught the ball…with his nose. He went straight down, lost consciousness for a brief moment and had blood gushing. He is such a tough kid that after about 15 minutes when we got the bleeding under control, he begged to get back out for practice, but we took him to urgent care. There was nothing to do there for him, but to follow up with an ENT later in the week. Throughout the week, we went on with life as normal…he went on a summer school skating field trip, went swimming, went to baseball practice, biked, etc. But along the way, had several bloody noses that got worse each time. I’ll spare you the details of what it was like when they were really bad, but we learned on Friday that the reason they were so bad was that he didn’t have a normal bloody nose; he had a tear in an artery.
Thus began a journey that until today, has included 6 surgeries and 10 days at the hospital and he still hasn’t been released yet. It has been scary, frustrating, traumatic and exhausting, especially since we still don’t see the light at the end of the tunnel. I feel the light is getting closer, but it’s not very bright yet. Writing has always been therapeutic for me, so this blog post is a bit of randomness, but trying to make connections to what I have learned from this hospital journey to our work in education (While numbered 1-10, these are in no particular order of importance):
1. Help people navigate the building, be family friendly. We are at the Children’s Hospital, which is connected to the UW Hospital, which is HUGE. We have been on several floors for different procedures in both buildings and have had to navigate through several different sets of elevators that go different places. During regular business hours, there were always people to stop and ask for help of where to go, but during the evening hours when he had emergency surgeries it was easy to get lost. While I was in my anxious/worried mama state and someone would give me directions, once they got past 3 steps I was lost and my anxiety just increased. I know that finding a classroom in a school for a special event is not as urgent, but I’m not going to forget this when we have parents/guests in our building.
2. Be mindful of your jargon. The medical field is very similar to education…while the medical field has LOTS of big terms, education has LOTS of acronyms. When doctors/nurses talked to me using their medical terminology I sometimes nodded and tried to understand what they were saying, but didn’t always fully understand. I sometimes jotted down some notes or even took a picture of the surgery release form so I could turn to google once they left the room. My favorite doctors/nurses were the ones that spoke in plain English for me and even drew diagrams while explaining so I had a clear understanding of what was happening.
A couple of pictures drawn by the Dr to explain where they embolized each artery and where the pseudoaneurism was.
3. Explain to the child, let him ask questions. This was all so scary (for my son and us)! It was complicated, because there was no right answer. He was a puzzle to the doctors, and there were multiple specialists on his case. He has been operated on by one neurosurgeon and three different ENTs and taken care of by countless nurses. When he was alert, they all included him on the explanations to help him understand what was happening and let him ask questions. Our favorite nurse was like his own personal science teacher and explained things in such interesting ways for him! She’s an awesome nurse, but man if I ever had the chance, I would recruit her for the teaching field!
4. Be a problem solver and be flexible. If one thing doesn’t work, try something different. The best nurse we had did this. The nurse we enjoyed the least was black or white—”no, you can’t have pain meds for another hour” and she was done with that. The best nurse tried different interventions to try to ease his pain to pas the time until he could have his next dose of pain relief. When he could only have clear liquids (most of the time during these 10 days) and he didn’t want 7 up or a popsicle, she got creative and made an icy (out of 7 up and the popsicle!)
5. Understand parents are doing the best they can, don’t judge! I think of this one, only because there were days that I went without a shower, because I was afraid to leave my son’s side. He could bleed at any time and I didn’t want him to be alone for a moment. Thankfully, I never felt judged by anyone there, but I know it’s very easy to pass judgement on the appearance of parents who are just doing the best they can given their situation. You have no idea what people are going through.
6. Put yourself in the parents shoes. As the neurologist explained to us one of the surgeries, he described what they would do and the possible risks. I just started tearing up, because the risks with this one scared me. I wanted him to get better, but the surgery was frightening to me. He was explaining in Dr lingo and I just asked the team, “what would you do if this was your child?” I had to hear the answer from those on the team that had kids. It didn’t help me to hear just the medical explanation of why they had to do it.
7. Parents—educate yourselves. Pay attention and know your child the best you can. With a nurse shift changeover, the orders in their computer system hadn’t been updated for his post surgery plan, but I remembered everything the team had told me prior to surgery. When the new nurse wasn’t following what I knew the plan was and told me she was following what was in the computer, I told her to page the doctor and find out, but because he had told me something different. You have to be an advocate for your child.
8. Be the filter – I have lost count of how many times I have been trying to stop the blood or listening to the next surgery description that I have been freaking out inside, ready to just sob. But I haven’t. I’ve had to keep my cool, stay calm and talk to my son in a tone to keep him from panicking during these moments. Todd Whitaker always says that teachers need to be the filter for their students and
Here’s how the spinner was returned to me once surgery started. LOL!
principals need to be the filter for their staff. There are numerous times at school where there are stressful and confidential situations going on that I still have to turn around and put on my happy, calm face, so that has carried over here in the hospital. I also learned that those darn, annoying spinners, have a great use in the hospital. My son focused on his while getting a few different IV’s and even while being put under anesthesia.
I am so grateful for the many friends and relatives who supported me via texting, Twitter, Voxer, and Facebook to help me keep it together!
*A note for any of you ever calling someone who is caring for their child in the hospital—do NOT tell them how much it stresses you out to hear what is going on or cry on the phone when you hear the news. That is the opposite of helpful and that person will NOT want to hear from you anymore during this time. Yes, that is from personal experience this week.
9. Family first – I’m very passionate about my work as a school leader and realize I’m a bit of an addict as well, having shared my struggles with work/life balance. As soon as our first ENT appointment turned into emergency surgery, my superhuman mom powers kicked in. When he was transferred to the hospital in Madison I didn’t have anything except for my purse, because I didn’t realize when we first went in how serious this was. On the 3rd day in the hospital I realized I was still wearing the same clothes, because I stupidly asked my husband to bring my work bag, not even asking for clothes! I attempted to keep up on a few work tasks, but the only time I could, it was one handed
Attempting to work…a lost cause.
(literally…one hand on my son’s mask because the strap hurt his head and the other on my laptop) and I just couldn’t put mental energy to focus on anything that required a great deal of thought. Remember, from #8 I was trying to keep it together! I had to live with the fact that I knew work was piling up, but I didn’t care, because being there for my son was the most important. This also made me realize that if I could take this much time out of the summer for an unexpected hospital stay, then my family could really handle planning a nice long vacation next summer!
10. Reach out
– so here is something really crazy. My son is a Braves fan (I said this was crazy right?Just kidding, that’s not the crazy part) and always follows news about the Braves. A month ago he showed me this article: Son of former Atlanta Braves player undergoes 7th procedure after accident
. At the time I remember thinking how scary that must be. As a mom, my heart just ached for that boy’s family and I was slightly fearful for my son’s love of baseball. Fast forward to now and this is the same position my son is in. (I’m hearing Twilight music as I type this!) I have no fear of reaching out to toher educators on Twitter, so one night while freaking out in the waiting room I took a shot in the dark and reached out to his family. I couldn’t believe I got a reply within moments, and have been so grateful to be in contact with his sister to share the details of Nathan’s journey and hear how similar they were to Jason’s. She asked me questions, suggested questions to ask the doctors, and provided me with words of encouragement to see the light at the end of the tunnel. In addition, I asked questions of Jason to share with Nathan to help him see a light at the end of this tunnel.
Anyone who reads my blog, knows that I am a proponent for reaching out to build a Professional Learning Network. MY PLN has been so great for me professionally, as well as personally. These two ladies started out as Twitter connections, half-marathon running partners, now writing partners (we’re working on a book) and traveled across state lines to bring me a much needed Starbucks, survival bag and hugs in the hospital!