Overwhelmed by medical needs

August 26, 2011

Now I know why they say that it hits you like a ton of bricks. I was so focused on making sure all the key people are doing what they’re supposed to do to get Wyatt the best possible care and to get him home as soon as possible, I never had time to sit down and let it all soak in. With every road block we faced, I may have cried for a few minutes but then immediately went into damage control mode. I stayed organized, did the research, made sure every specialist involved did their research, double and triple checked everything for everybody. And now here we are. Almost everything is lined up for Wyatt to come home and we’re getting our training on all his medical equipment. I knew all along how much equipment and supplies he uses daily. After all, I went to the hospital every day to spend time with him and practice some of his care. Yet for some reason, going 100mph every day, it never really sunk in. It always felt more like I’m taking care of somebody else’s baby. I kept so busy, I never allowed myself to give in to the grief, self-pity or fear… Today that changed. Now I feel lost, guilty, angry, and sad, and I simply want to run away from myself. We just got done with the 4 hour training on all the medical equipment and I’m suddenly overwhelmed. I'm not worried about the how to take of Wyatt on a daily basis because I've been in the hospital with him daily for 12 weeks now. But there are so many medical supplies, it's hard to keep track. I thought of myself as being very organized and proactive before. Keeping up with monthly medical supply orders though will take me to a whole other level. Just to give you an idea... There is the ventilator with the humidifier and O2 concentrator which both have different attachments you have to change out for home use vs. travel to appointments and such. And then the tubing and wires have to be changed every so often, and certain components have to be cleaned on different daily and monthly schedules. The ventilator also has a back-up battery for home use in case of power outage and another one for travel use.  There is a heart rate and apnea monitor combo that he needs to stay attached to everywhere we go and also a suction machine with all its one time use tubing that we always have to have with us. Then there's the oxygen tank with the Ambu bag for emergencies that has to go with us everywhere we go. There are supplies for daily trach and G-tube care, and of course the trachs themselves which we have to change at least every 2 weeks. There is the feeding pump and daily use feeding bags. And let's not forget the nebulizer for breathing treatments when needed. And we haven't even gotten the CO2Monitor yet... How we will ever leave the house for all his specialist appointments is beyond me? It'll take an hour just to get loaded up. My car seats seven but it's only a relatively small SUV and all his medical equipment has to be stored on the floor while riding in the car. All of his appointments definitely have to happen with someone else watching the other kids while a second trained adult (preferably a nurse) is in the car with us going to and from appointments... I have to remind myself not to panic right now because I know it's a matter of practice and getting more comfortable with everything over time. Seeing all this equipment in our house right now though is just another reminder that daily life will never be as simple again as it used to be. I'm looking for that button to hit that will make everything ok, that will fix him. I want this nightmare to be over with. I want him to be normal and healthy. He looks and acts like a normal baby but with all this equipment we're constantly reminded that the next second could turn into a life-threatening emergency without any warning. There is no cure (yet). He's not going to outgrow this. CCHS is for life. He'll always need this kind of equipment just to breathe, to survive. We're supposed to protect our kids from any harm and it hurts to know that I can't make this go away. I wish it was me and not him.