The following is something that I wrote while we were still in the hospital. It is old news, but if you were looking for another reason to avoid hospitals, then this might help –
After the last two days and nights, we were all in a very dark place. I had no idea how much disparity exists between nurses. In the past I always felt defensive for nurses when people complained about theirs, but after being on this end, there really are quite a few people working in healthcare that should probably do something else. The hard part is that Nico will be on chemo for three years and I will see a lot more of the people I desperately want to take to the mat. So I am doing my best to play nice while still advocating for my son.
There is a lot of pain and discomfort in this whole process, but I think the hardest part for Nico is actually the lack of control and freedom. How would you like to be in a dead sleep and have someone shove an ear thermometer in your ear? Or have stranger after stranger lift up your shirt and push on your sore, enlarged belly (liver) without asking? For some reason, because he is a child, people do not think they have to ask him or tell him before they do invasive things to his body. Of course Jeff and I try to mitigate the problem, but most of the time we are also asleep or not expecting the contact either. Some are better than others and there is some serious anticipation at change of shift because you are about to find out how good or bad your day or night is going to be by the nurse that walks through your door.
There was a moment a couple of nights ago when Nico was allowed be disconnected from his IV pole. He was so excited just to run freely. He was laughing and running around the room when someone opened the door and like any two-year old made chase. My sister, Jessica, and I headed out after him. It was the first time in days that my little boy acted like a care-free child. He was full of joy and for a moment everything seemed normal. When we caught up to Nico (who had only made it a few yards) his nurse hurriedly approached us and while speaking to Nico reprimanded me – “You are not allowed in the hall without socks!” She then grabbed his foot and started to force a sock on him. He naturally objected. She scolded him – “You can’t be out here then. You will have to wear socks or stay in your room!” Both Jessica and I were shocked and attempted to comply, but Nico’s moment of normalcy was destroyed. He was again a sick child, in a sad place, without any say about anything happening to his own body. Nico became absolutely hysterical. He no longer wanted to play and repeated “room, room, room” while he sobbed.
Once back in his room and settled down (which took a while) he asked for markers and his “buddy.” A buddy is a doll that the hospital’s child advocate gave him and it is basically supposed to be him – it wears a hospital gown and has an IV like Nico’s. When he first arrived he was given markers and he drew what was supposed to be a little face on it. So we gave Nico his buddy and markers and he immediately flipped the doll over and said “buddy’s back.” He then started to mark on the doll’s back exactly where he had his bone marrow biopsies the day before. The procedure did not go well because they were not able to aspirate bone marrow and instead had to take punch biopsies. Nico’s lower back (around his hips) was swollen, bruised and bled pretty badly. By that night he could not reposition himself from the back pain. So Nico began to color buddy’s back exactly where the biopsies were taken as he softly repeated “buddy’s back.” After he spent a few minutes doing this, never coloring anywhere but in the area where he was hurt, he then said, “buddy’s shoes” and colored shoes on his doll. It was heartbreaking, but I really marveled at how this little two-year old processed these traumas. Socks and shoes may sound trivial, but we have zero control here. He cannot eat, drink or sleep when he wants. He is confined to a small area for immunocompromised patients, and since the sock incident he refuses to walk in the hall. Hospitalization is hard enough for adults, who have some understanding of the rationale behind the treatments, but Nico is two-years old and none of this makes sense.
Yes, it is ideal to wear shoes in a filthy hospital. Yes, my son has a compromised immune system. But based on common sense and what three different hematologist/oncologists have told us, Nico will not and cannot live in a sterile world. One oncologist told us that there is zero data actually showing that the masks that you see oncology children wearing do anything to prevent infections. Another oncologist told us that the only reason that they even recommend masks at all is because it makes some families feel safer. Basically, Nico will have to avoid confined areas that contain large groups of people, especially children, for the next six to eight months. Nico cannot and will not electively be around anyone that is sick with even a small cold. But the reality is that Jeff or I will probably have at least one cold in the next six to eight months. Nico will have to wash his hands often and anyone visiting our house will have to wash their hands. We will minimize his risks, but it is very important that Nico still live as close to normal as possible. Nico does not use his feet to eat, or rub his eyes, or pick his nose (a favorite pastime) and feet can be washed. It was important to let Nico have a break from his reality and he could have been persuaded to wear socks in another moment and in another way. So I guess the lesson for Jeff and I is that we must learn to protect our son from real dangers, minimize as much risk as we can, advocate for him and give him as much of a life as his immune system will tolerate. The hardest part will be accepting that we cannot really control anything about this process. We have to trust that there is light at the end of this tunnel even if there are more tunnels beyond that.