Back at Home

Posted on September 10, 2012 by William 4 Comments

Evan had his pacemaker removed on August 15th and spent 3 weeks being closely monitored before we felt comfortable coming home. We came home last Tuesday, September 4. This hospitalization was 33 days and we will only be home for 20 days before we head back to Ann Arbor to have Evan’s pacemaker reimplanted.

Evan continues to receive IV  antibiotics through the PICC line in his groin every 6 hours. Sarah and I learned how to administer these meds and a nurse comes once per week to change the dressing. The IV antibiotics for home administration come in these really cool medical devices that are humorously called grenades. The below picture shows a full one on the left and an empty one on the right. Once you’ve cleaned the outside of the IV line and flushed it with saline you attach the grenade and the force of the balloon squeezes the medication through the IV line over about 30 minutes. Each grenade comes pre-filled with medication and is discarded after use. No meds to draw, no pumps to mess with, and no electricity needed. It’s very handy.

Additionally, Evan came home with a home heart rate monitor. This device has 4 leads that stick to his chest and monitor his heart rate. The heart rate  is sent wirelessly to a Blackberry. 13 months old and my boy already has a Blackberry… 😉 are you surprised? You shouldn’t be. If his heart rate drops below 40 bpm for more than 10 seconds the Blackberry sends data to a company called LifeWatch that then reviews the data and if necessary calls Mott Children’s hospital. They can review the data and call us if we need to do something. We’ve been home for almost a week and we have not heard anything from LifeWatch or the hospital.

The surgeon gave me one of the pacemakers that had been implanted in Evan. I had asked for it and they were nice enough to sterilize it and give it to me. I don’t know exactly what I am going to do with it yet but I just had to have it as a keepsake. One day i’ll be able to show it to Evan, along with a lot of other things and show him how amazing he is and how his strength and wonderful demeanor has brightened the lives of everyone that he’s touched. Below is a picture of the pacemaker lying on Evan’s stomach. This is approximately where it was in his little body. It’s a lot bigger than I thought it was going to be.

Our week home has not been very relaxing. The house was a disaster and completely without food after being gone for a month and only coming home a couple nights per week for sleep and work. We got home and have been trying to clean, shop, cook, and keep an eye on a very mobile little boy now. Oh and did I mention that our hotel had bed bugs?! Ya. Sarah saw one bug while she was packing up to check out of the hotel, after we had stayed there on and off for 10 days and had been back and forth to our house. Over the next few days the bites started showing up…and itching, itching like chicken pox. At one point she counted 156 bites, 65 on one arm alone. The hotel was very apologetic and refunded our entire stay with them. We talked to an exterminator and we’re taking the necessary precautions. Aside from that we’ve been trying to get outside and go for walks and bike rides. We’re still not sure if Evan likes the bike rides or not, he always has this awestruck or duh look about him when we go out.  😆 He doesn’t even make an effort to sit up, he just lets himself fall over and won’t bother sitting back up. He cracks me up.

Here are a few pictures from our last few days in the hospital and our week home.