Late Friday afternoon, about an hour after snack time, Max started complaining about a tummy ache. At dinner time (pasta, an all-time favorite) he was miserable. He came to the table, but he did not eat. In the end he wrapped himself in his blankie and sacked out on the couch. He was such a forlorn sight, laying there, fitfully dozing and complaining.
After dinner Larry said that we should take him to the ER. I agreed; it is not in Max’s nature to complain in this way. Mind you, he can throw a very impressive and protracted tantrum, but this was not the case. We decided that Larry would try to nebulize him and I would get ready to drive him the hospital. I grabbed a few books for Max, his jammies, blankie and a toy. Then I bustled upstairs to finish making the beds (they had all been stripped for laundry day). It was about a quarter to nine when I finally hit the road.
Because Max has CF I drove up to the big hospital in Richmond where the CF clinic is located. The clinic staff had drilled into our heads from day one, that if Max needs to go to an ER it must be this one. The other hospitals in the area are not bad; they are just not as capable in dealing with the special needs of a CF patient. Fortunately it is only an extra 15 minute drive to get there. Max was mostly quiet during the ride, except for the two big looping exits I took. Then he would howl the “It hurts, it hurts!” All I could think of was that he had appendicitis or a blockage in the form of bowel intussusception (the intestine telescopes into itself). Of the two, appendicitis was the less scary option.
When we got to the hospital, at about 9:20 pm, I parked the car in the visitors/patient parking deck and carried Max to the ER. It was a long slog, but better than risking the 30 minute slots by the entrance. From previous experience in other hospitals I knew it would be at least several hours until I could get out and move the car.
And boy was I right.
I didn’t get to leave the joint until Saturday afternoon when Larry came up to swap with me.
It turns out Max was severely constipated with ileus, a non-mechanically blocked bowel. We got the initial diagnoses around midnight after the ER attending consulted with the head of the CF clinic. At that point Max had been poked and prodded by a whole host of people, had an x-ray and a CT scan. According to Dr. Elliot it was a classic presentation and the best course of therapy would be a series of enemas.
Woo Hoo! A non-surgical solution!
Of course we still had to run the gauntlet with the surgical consults. The resident was a nervous sort and seemed reluctant to let us go. When he came back a second time I pointedly asked him if he had spoken with Dr. Elliot. I did not want my son to go under the knife if he did not have to. After a pause he said no, but that the ER attending had. He then fidgeted about a bit more and then left us. Much later the surgical attending cruised in, palpated Max’s abdomen and announced that enemas were the way to go.
Whew, the big dogs were in agreement. I could step back a bit and let things roll.
All throughout this Max was very quiet and compliant with all the poking and prodding. A very worrisome state for me, normally Max is very vocal about his dislike of the medical profession and can be difficult with repeated examinations. He did protest with the initial blood draw and with the insertion of the IV, but after that he was very passive.
Then we waited...
It wasn’t until 9:30 am that we got bumped up to the pediatric ward. I spent the whole night stretched out next to Max on this gurney. It was too small for the two of us, so I never was completely on board. But that was better than being on the floor. In hindsight I should have gotten a chair, but I was too stressed to think of it and Max needed me to be nearby.
Finally at 10:00 am we went downstairs for a contrast enema under a floroscope.
It was a fascinating procedure. I got to watch as the screen as the contrast material worked its way through. Max was wiped out and as a result was far more cooperative than I would have expected under normal circumstances. At one point the doctor almost gave up, but then we saw some visible progress with the blockage. I was very impressed with their kindness and sensitivity to Max.
The rest of the day was spent trotting back and forth to the bathroom, dragging the stupid IV pole along with us. Periodically we had to strip down the bed. Max and I were both zombies. At around 4:00pm Larry stopped by with the rest of the crew. He would be taking over and I would get to spend the night home. Unfortunately he would be stuck with the second half of the big “poop-out” namely, getting Max to drink GoLytely (a rather misnamed laxative). Oh and by the way it was Larry’s birthday.
It was about 5 when we got home. I puttered around a bit and made a slap dash dinner for myself, Jake, Nate and Rebecca. The table seemed so empty without Larry and Max.
At around 7:00 I called Larry at the hospital. He sounded all drawn out. Max had refused to drink the laxative and they attempted a nasogastric tube. It had been a disaster. Tears all around and Max’s nose started to bleed. I had called just when they had decided to regroup. I offered to go back. Max is a bit more bounded with me and we felt we had a better chance we me getting him to drink than Larry. So one quick shower later and a change of clothes in hand I headed back to the hospital.
When I arrived Max had already drunk a cup of the stuff. The threat of a repeat with the tube was enough to keep him going. I wished Larry a happy birthday and slipped next to Max in his bed. I spent the next 3 ½ hours pushing Max to drink. It was very draining. His nurse, aka the “Voice of Doom,” was not very supportive at first and never did give me a straight answer on how much he needed to drink. Max passed out around 11:00pm after drinking almost a liter. The VOD became a little more encouraging as he kept knocking back the stuff, but she never seemed to be happy that we were avoiding the tube. It was then that I started bugging the nursing staff about eliminating the IV. He could obviously drink fluids and it was a great bloody pain dragging the IV pole around.
That night poor Max was a mess. In the end we had to diaper him. My brave little boy who is so proud of going potty all by himself agreed to it with a simple nod of his head. Later on as he slept I cradled him in my arms and cried. I just wanted my little boy back.
Sunday morning a technician with a portable x-ray slipped into the room and got a shot while Max slept. The rest of the day was spent schlepping back and forth to the bathroom with the now evil pole (it kept catching on the bathroom sill and threaten to topple over). As the day progressed Max began to perk up. At mid day he was allowed jello and apple juice. At four my campaign to ditch the pole paid off. The attending didn’t want to lose it, but I told her that I only wanted to ditch the pole. The port could stay until it was time for us to leave. I then called Meryl and asked her to please stop by and bring me dinner. The really hard part of being in the hospital with your child is that you are tied to the room. If you are not there when the doctors stop by, well you are out of luck. And in my case, Max didn’t want me to leave the floor. If I wanted dinner someone would have to bring it to me. We figured a salad would the best thing for me to eat since Max would be wholly uninterested in it. So what happens? Just before Meryl arrives they do a blood draw, Max sets up a big fuss, exhausts himself and then takes a map. I could have had anything I wanted to eat. Oh well, at least I had a good visit with Meryl. It was nice to see a friendly and familiar face.
Dr. Elliot stopped by while Meryl was there. As we spoke he actually apologized for how long it took for treatment to start, a first in my experience. He seemed a little less gruff with me and when I mentioned that I wanted Max to go home the next day, Monday, he agreed that it was a good idea. As long as Max kept pooping and could eat soup with crackers it would be a go. He then mentioned how the attending was amazed at how much of the laxative Max drank. Apparently I was right to wonder about the VOD and her reluctance to give me any numbers.
Sunday night was almost restful. The VOD came back on shift and seemed a little less negative. I, however, did not tell her of our plan to spring Max the next day. Something told me she would probably be against it. My goal was to simply demonstrate that Max could drink lots of fluids and go to the bathroom. That is all a hospital wants you to be able to do before you go home.
Monday morning dawned with a gray sky and snowflakes. I told the nurses that I wanted to bring home Max before the weather got too bad. It struck them as a fair request and they got the ball rolling. Yes! We were going home!
We didn’t get out until around 11:00 am, but we were free!