William's first night in the hospital

The doctor told us that we should not waste any time getting to the hospital if we were going to get the diagnosis before all the doctors went home. He was requesting a spinal tap/lumbar puncture and an MRI, though the MRI would and could probably wait until the next day. We told William in the car that we were going to a hospital, where doctors were going to try to find a way to make his legs better. He was cheery and not even that disappointed that he was not allowed to eat until the MRI was over. The staff was waiting for us when we arrived and they sent us to the playroom full of toys while Doug signed his admission papers. The playroom was a great distraction for the rest of our stay in the hospital. I picked up a pamphlet about talking to preschoolers about “procedures” like the lumbar puncture he was going to have. It suggested using words like “poke” instead of needle and “water” instead of fluid. The pediatrician on staff examined William and also found no reflexes and agreed that an LP would be beneficial. In the course of all of it, she heard a heart murmur. Being the excellent mother that I am, when she asked me if anyone had ever mentioned a murmur before, I could not remember whether our pediatrician had told me that about William or Robert, though it wasn’t a concern at his age. Regardless, she was going to order an EKG and ECG. Great, one more thing to add to worry about.

In a bit of down time, William asked what they were going to do. Empowered with my pamphlet, I told him that they were going to have him lie down on his side and curl up very tight like a ball and they would clean his back and it would feel cold. Then I told him as a mater of fact that they would poke his back. “With their finger?” he replied skeptically. No, fooling this kid. Awe forget it, tell him straight. “No William, they won’t use their finger. They’ll use a needle and get some of the liquid from your back and put it in a tube and test it to see if it has protein in it. If it does, they’ll know how to make you better.” Naturally, his next question did not surprise me. “Will it hurt?” Sigh. “It will hurt for just a little bit, but it will feel better after that.” And, that was that. He was satisfied. I knew right then that the kiddie words would not work on him. They took us to the “Procedure Room” and told us that we could stay to make him comfortable to help him cooperate. We practiced curling like a ball and we learned that William would make a good soccer ball, small and round. When the real time came, the beta-dyne was cold and he didn’t even like her poking him with her finger to find the right spot. The “poke” was upsetting but we sang The Wheels on the Bus through it all and he helped us remember the verses. I was surprised to learn that a) spinal fluid is clear, b) there is lots of it in there, c) they don’t use a tube or vacuum vial to collect it, it shoots out on it’s own and they just catch the fast drips with large vials, d) they fill 4 extra large vials for this test and e) it clots very quickly afterward.

After a bandaid, and hugs and brave boy words, it was time for the cardiologists to check out the murmur. It was, thankfully, painless. The EKG is a 30 second test. The ECG was about a 15 minute sonogram and it was difficult for him to hold still in just the right way, but we managed anyway.

The next part was hard. He had to get an IV. Part of his symptoms were that any squeezing pressure on his arms, legs or chest caused him pain. That meant that the rubber band they put on his arm to find the veins was painful for him AND he knew that they would be “poking” again. After a couple of minutes of the nurse looking for the right vein, I realized that she was eyeing his right hand, which is the favored thumb-sucking hand. I asked him which thumb he sucks so we wouldn’t put the IV in that hand so he could have it free and he cleverly told me that he sucks both thumbs. While that is true, that if his right thumb is some how incapacitated or dirty, he will suck the left, it was not going to make us change our minds about the IV. So, the vein finding process started over on the left hand and he was definitely tired of all the “procedures.” After the “poke” the nurse wrapped him up with a little plastic “house” over his IV to keep it from getting knocked out, then an arm board to keep him from wiggling it out. He could finally relax a little bit and we got him in a gown and moved him to his room. It had sports wall paper and a tv with a Cars DVD already there, so he was happy. The cardiologist came by to tell us that the murmur they heard was innocent and should not cause him any problems.
In the room, we heard that the spinal tap did yield a high protein count, which confirmed the diagnosis of Guillian Barre Syndrome. The pharmacy was working on an IV IG treatment for that night, but it takes a few hours to extract it from the whole blood. Meanwhile, he would be getting an MRI at 8:30pm, which is a half hour past his normal bedtime and after 4 hours of “procedures.” He was exhausted, but Cars seemed to be entertaining him. Doug left to get some gear from home and his parents came up to pay William a visit. They arrived just as the radiology department came up to get him (early) for the MRI. Grandpa brought him a Dallas Cowboys hat and walked with us downstairs to radiology. William saw the MRI machine, which I admit was scary looking and the anesthesiologist didn’t give him much time to adjust to the idea (I hadn’t even had a chance to tell him what they were doing)! We put him on the table and he started crying. They put a mask of gas on him and he went to sleep shortly, scared. I felt so bad for him. It was just one more thing that he wasn't ready to deal with. I was told that it was a 3-4 hour process and they would bring him to me when he was done. At midnight, they brought him back, in tears and he was hoarse from the dry air he breathed in a tube for 3 ½ hours. That was an emotional low for me, to see him so distraught when I felt like it could have been handled better. He cried until he fell asleep again, though we were expecting to wake him at 12:30 to start his IVIG.

At 1am, the nurse arrived with a huge syringe of a clear fluid and a digital pump that would push the IG through the IV at a very regulated rate. She attached William to monitors for blood pressure, pulse, respiration and oxygen and then began the IV. She returned every 15 minutes to check is vitals. If all was well, she could double the rate of flow every half hour until we reached a maximum of 30 mL/hour. It would take 4-6 hours to administer the treatment depending on how well he tolerated it. He tolerated the IVIG very well even an hour into the maximum rate, but the nurse observed him moaning and restless in his sleep, so she lowered the rate to 20 mL/hr. Even so, at 4am an alarm sounded and he was calling out in his sleep and said he was cold. When I touched his legs, you could have cooked an egg on them. His blood pressure had spiked and he had a fever of 105. He was in hysterics, just wanting to go home or be anywhere but there. Thankfully, his treatment was finished so we didn’t have to endure any more turmoil for the night. They administered tylenol and we cooled him off and calmed him down with a popsicle. He chose green and I asked him if he thought green popsicles were broccoli flavored. He just shot me a look, he was clearly not in the mood. As the fever broke, he fell asleep and stayed asleep until after 8 the next morning.