Darling Boy was released from the hospital a week ago and I have just about finished recovering. He got two operations for the price of one. Apparently, his risk of anesthesia is higher than normal so giving him 2 operations seemed the safer way to go. And of course, medical personnel always make the procedures seem so easy. It’s only a g-tube placement, it will take ten minutes. It’s a tonsillectomy, kids usually go home on the same day. I understand that this is normal when you work as a surgeon: yanking out tonsils and placing g-tubes are all fun and games for them.
When we discussed the surgery at pre-hospitalization check-ups, the E.N.T. doctor assured me he would be put in Pediatric Intensive Care Unit to monitor him overnight as he may have problems with his airway after surgery. Then the G.I. doctors said we would be hospitalized 2 or 3 days so we could learn how to work the g-tube. Somehow, I thought that was slightly optimistic. And. of course, I. WAS. RIGHT.
The G.I. team came out after surgery and said everything went swimmingly. They even gave me pictures of the surgery. The G.I. team told us to wait in the post surgical area and the E.N.T. doc would be out to see us. At about this point, the anti-anxiety aid (klonipin) I brought kicked in and I fell asleep on Lovely Husband’s shoulder. I woke up to drool coming out of my mouth and a very concerned nurse telling us to get to the P.I.C.U. We were all like, no, they told us to wait here. And she was all like, we need you in the P.I.C.U. Whoah! So we followed her to his room and he was flipping out in only the way that my Darling Boy can. Because he’s non-verbal and non-ambulatory doesn’t mean he can’t express himself. He was thrashing around the bed because he was in pain and he didn’t know anyone in the room. He was literally trying to launch himself out of the bed, Lovely Husband named it the Flying Squirrel move.
The thing with kids who are non-verbal and intellectually disabled is that they are aware of what’s going on around them but can’t always understand it. He calmed down as soon as Daddy put his arms around him and told him to calm down. . All went well until shortly thereafter he had a little problem breathing. They had to knock him out to get his breathing under control but he was on air room after that. My Lovely Husband and I then started taking shifts: one of us sleeping while the other kept him comforted. That night he needed a nebulizer treatment and oxygen. He was on various pain meds but was still waking up in discomfort. About 4 A.M. he woke up and inadvertently ripped out his oxygen tubing while he thrashed around in bed. At that point, I asked the doc ( who looked like he had just graduated from 7th grade) if D.B. could have some morphine. That did the trick and he was able to rest peacefully for a few hours. We had no more airway incidents after that.
We were in the P.I.C.U. for 4 days. We didn’t need the docs so much as we needed the 2-1 nursing ratio. First, we had problems with him tolerating feeds. Then we had to load him up with twenty billion ways to make him poop. ( The constipation post-surgery wasn’t allowing him to tolerate even pedialyte.) Through every step of this process, the doctors explained what was going on and planned the next step. It’s fun doing rounds with first year residents when you can answer the attending’s questions faster than they can. They always consulted with us because we know his baseline. There was no way either the Lovely Husband or I could leave him for those first few days. We are his comfort and his voice.
There are times when well meaning social workers and counselors will tell those of us in this situation to just go home and get some sleep. I know there are people who don’t have the luxury to stay at the hospital 24/7 because of their family situations. Fortunately, I have good friends who took care of the Twins while all this was going on. But even if I had to stay and Daddy went home to take care of the girls, there was NO WAY I was leaving his side.
After things calmed down and we were on the step down unit, I snuck out of his room while he was sleeping and went to the Parent room. While I was surfing the Interwebz, I met a lovely woman whose 16 year old daughter was in the P.I.C.U. She had come to the Parent room to get some laundry done. We started talking about our children and her daughter has the diagnosis that we were looking at for Darling Boy. She is also non-verbal, non-ambulatory and has seizure disorder. They had come in to check out a ketogenic diet to see if it would help her seizures. She ended up with a collapsed lung and was intubated. This mom explained to me that she had finally organized a bed and breakfast weekend with her husband but now had to cancel it. Her only saving grace was that her son (24 and his sister’s best friend) had already taken off to care for his sister while mom and dad were away. Now he was coming to stay with her in the hospital. After about 15 minutes, I could see this woman getting twitchier and I said, “you have to get back on the Unit.” And she said, “yes, I can’t leave her that long.”
So I thought about the beautiful article about being a Dragon Mom. The writer spoke about how her son was born with TaySachs and she was doing everything to enjoy every minute with him and whatever she could to comfort him through the worst parts of his illness. And then I thought about those of us who are long-term Dragon Moms. We fight for the right educational placement. We fight the insurance companies for everything. We hold our children and comfort them when they are getting the 8th stick in about a 2 hour period. (Darling boy has fragile veins.) We do not leave their sides when the going gets tough. It’s not because we don’t trust the medical professionals. That’s not it at all. It’s the fact that we know all our children’s idiosyncrasies and what they mean. We know the difference between the retching cough that means vomit and the upper respiratory cough. We know which songs will calm them down. We know how to hold them and rub their backs. It’s our voices that calm them and no one else. It’s not an easy job but what else is there to do. And when well meaning professionals tell us to take a break because we are twitching a little too much, it goes in one ear and out the other. I don’t care if they think I’m overprotective and batshit crazy. They will go home from their shift but my shift doesn’t stop.
And despite the depression, the continual stress, I love Darling Boy so fiercely that I am on fire with my love. I don’t know how the muscular dystrophy will affect him as he gets older but eventually he will have breathing issues because that is the nature of the disease. As I come to terms with this part of the diagnosis, I try to take each day and celebrate something little. He slept well last night. He’s eating well today. Since the g-tube, he’s been stronger and sitting up like he used to. My Lovely Husband is also fierce and protective about all of Darling Boy’s care. There are other parents who have a child on palliative care or are waiting for an organ transplant. We will stay by their sides and celebrate the good days. And we will thank our friends for helping us through the bad ones.