Good News

William visited the Neurologist for a follow up appointment.

William's reflexes have returned!! That means that his nerves are healing. It is wonderful that it has been such a short time, which will prevent further complications of muscle atrophy and prolonged weakness. With reflexes, he will collapse less, though he will still stumble as he is just a clumsy kid in general.

Dr. Chudnow, the neurologist has released William from his care. Further follow up will be through his Pediatrician unless any unexpected worsening occurs.

Backfill

I've been back filling the blog, so you may want to start back at August 15th to catch up on all of the changes.

The Rest of William's Hospital Stay

After his second treatment, which was uneventful, we were just lounging around the hospitial for 3 more nights until he would be released to go home. William was antsy and wanted to leave. He did not like lying in bed all day, despite the many DVDs we allowed him to watch. He was allowed to go to the playroom to play, which we did often but it was closed on Sunday and closed at 6pm each evening. He entertained himself by coloring and painting and doing those sitting still type things, but he really wanted to be free to run and jump and play, not that he could last long even if he was allowed to romp on the playground.

The night of his second-to-last treatment, they had to redo his IV, which was another traumatic experience for him (and for needle-phobe Doug, who was with him). They made it through alright, but it definitely encouraged William to come home, lest they try to stick him with anything else.

Those last days were filled with more physical therapy, many doctor visits and some more friends and family dropping by. The kids' menu was surprisingly good and he had quite the variety of food while he was there.

On Tuesday morning, we waited to see the hospital doctor who could release him. We played with the physical therapist some more, doing "Super Duper Bowling," which is where you pitch the ball while standing only one one foot. Some of William's favorite therapy is kicking the ball.


At 11 o'clock, the doctor came to release him and answer our last questions about whether we should expect this to return (no), how long would full recovery take (1 month up to 1 year). After her release, he got his new IV out, had a bath and got dressed to go home! He was so excited, but also so tired. He slept for many hours once we got home to the apartment. I called doctor's offices for follow-up appointments, physical therapy offices for evaluations etc and collapsed for a nap too.

William’s Day of Great Improvement

That morning he was thrilled to get a breakfast taco, but he ate pickily, which is entirely unlike him. He was in good spirits, but tired. A few visitors came to see him and they brought gifts, balloons and toys for him to play with. We must have seen every professional in the hospital that morning. Some to assess his breathing, some to assess his movement, some to make sure he was still enjoying his childhood while cooped up in a hospital room. We saw a physical therapist who walked with his IV around the hall and played ball with William. He loved it and when she left, he asked to walk the loop again. The staff pediatrician made a visit too and discussed changes to that evening’s IVIG. I requested that we begin at 9pm instead of 1am so we could stay awake for the duration to avoid the middle of the night crisis of the night before. We also removed his monitors and the IV until night time. He enjoyed a special lunch (with french fries!) and then took a nice long nap for the duration of the afternoon. Doug came to swap shifts with me that afternoon and I returned with Mary and Robert for a visit. Mary was relieved to see William and know that he was getting better. I was surprised to see his improved gait and energy in the halls. He was not perfect, but he was certainly much improved even since the physical therapist saw him. Doug’s mom came to get Mary and Robert to keep them for the weekend and I left to get a good night’s sleep. Doug stayed behind to keep William company for treatment #2, which went very well, with no complications.

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.

Guillian Barre Syndrome

GBS occurs when a person’s body attacks a virus, but some how gets confused and the immune system begins to attack the nerve bases at the spinal cord instead. In this way, it is a hyper-immunity. This causes paralysis from the bottom up and as it progresses it can cause paralysis of the diaphragm or heart muscles. GBS is a temporary condition that usually resolves itself, but given the dangers of it interfering with the involuntary functions that keep us alive, they now perform treatment and hospital observation. 30% of patients require a ventilator to keep them breathing while the body repairs the loss of its nerves and regains movement of the affected muscles. The treatment involves IVIG, which means they administer immunoglobulin (blood donor antibodies) intravenously. In most cases, like William’s, they administer 5 doses over as many days. The faster they can flood the body with antibodies, the more effective it is, but side effects can prevent them from administering it as quickly as they would like.

A neurologist.

Doug and I took William to the neurologist on Thursday afternoon, hopeful, but scared. After a patient history, he examined William and found that he has no reflexes in his lower body. He banged on William’s knees until he was crying in pain, but got no response. He told us that he suspected Guillian Barre Syndrome and that William would have to have a spinal tap to confirm it. He told us that while they don’t know a whole lot about what causes GBS, they find that it is most commonly seen after a viral illness, especially an intestinal virus or occasionally after vaccinations. William has not had either of those recently, but there are other triggers. I asked him if he could eliminate Muscular Dystrophy and he said that without a doubt William is not suffering from MS. Whew.

A doctor's visit.

I called the pediatrician’s office at 8am on Tuesday morning and he was seen at 8:40. I had hoped to email the doctor a list of his symptoms before showing up so I wouldn’t have to blubber in front of him, but they aren’t set up for that kind of thing. Instead, they left a note on the chart so that I could discuss it in the hall with the doctor first. That worked out just as well. When she saw him she was shocked that it had only been a week since she had seen him walking and moving around just fine. She didn’t see any distinct signs of one particular illness, but felt sure it was not muscular dystrophy, if for no other reason than because of the sudden onset. He had no swelling or fluid in his joints to suggest arthritis. Her best guess was a virus that was attacking his joints or muscles, but since that wasn’t provable we’d have to go by process of elimination. She called 2 specialists, a neurologist and a rheumatologist. Pediatric Rheumatologists are few and far between, so she had a difficult time reaching one. The neurologist scheduled an appointment for Thursday and they discussed his symptoms and suspected Juvenile Dermatomyositis, a condition that causes your immune system to attack your joints. Meanwhile, I was feeling foolishly hopeful, even without the diagnosis. My greatest fear had been, even if only temporarily, eliminated and I clung to that. I imagine that it was God’s peace that so many were praying for us.

William

For the month of August, William had complained at naptime about pain in his legs. It was always temporary, but after 3 weeks, I took him to see the pediatrician to lay it to rest once and for all. She examined him, drew blood to test for leukemia, and sent us for x-rays. The x-rays were perfect, just beautiful. The blood work came back that afternoon and was negative for any signs of cancer. With temporary pain occurring after sleep, she diagnosed growing pains. It made sense to me.

On Thursday, the week of the move, I took the kids to the mall to play on the playground in air conditioning to get away from the boxes and chaos in our house. William fell down a lot, his legs just crumbled underneath him. He fell at least 8 times on the hard mall floors and his legs were shivering from exhaustion. I knew that after the move we would have to return to the doctor. Friday, before closing, Doug’s mom came to pick up the kids to keep them for the busy weekend. When we saw her Saturday night after the move, she mentioned some concern about his legs and how weak he had become. He was unable to climb the stairs, fell frequently on solid, level ground, could not jump or run. I didn’t seem him until Sunday morning and I was shocked and terrified at what had happened to him over the last 2 days. His fingers had curled into a nearly unusable position, he had to lock his knees to be able to stand at all, his gait had completely changed to a stiff, slapping step and he could not dress himself or hold his own cup. The family had already done a little internet research to try to find a solution to his problem, but what they found were scary, horrible illnesses which terrified us even more. Of course, the doctors offices would be closed that Monday for the holiday, so he would have to wait until Tuesday to be seen. I cried Sunday and Monday night more than I slept. What we feared the most was Muscular Dystrophy, though his symptoms fit it best. We brought him “home” to the new 2nd floor apartment Monday night. He could not climb the stairs or make it more than a few steps at a time without falling. I prayed fervently almost all that night. There was no way for me to sleep, knowing that some horrible news was waiting for me at the doctor’s office the next morning. By that time, half the church and extended family had been notified for prayer. I, myself, had emailed my closest friends asking them to pray for William and for me. I felt helpless and desperate and down right depressed.

Closure

After having our house on the market for just about 3 weeks, we received an offer. It seemed low at first, but after a bit of negotiation, we were able to agree on a price beneficial to both of us, which included a closing date less than one month away. I allowed myself to avoid packing and preparing because with 28 days to go, there were a lot of things that could potentially go wrong. But soon with only 2 weeks left and the inspections and appraisals out of the way, the only thing left was to get our stuff out and hope they show up to sign the paper work. We searched for rental houses and apartments. We interviewed moving companies and terminated our utilities and services. Things fell into place: a second floor 3 bedroom apartment, apparently the only 3 bedroom available within a 15 mile radius, a moving company who takes pride in not damaging your stuff. With a little over a week until closing, we began to pack. Doug’s mom came over to wrap and box and within an afternoon, the house looked somewhat barren. We continued boxing and packing and color coding each box for storage or apartment. Soon enough, we found ourselves in heap of our stuff in what would soon be someone else’s home. The day came, Friday, August 29th, when we appeared at the title company to sign our house over to someone else. We had negotiated to lease back from them for a few days so we could move out after closing, so we were able to return there for one final night’s sleep. The movers arrived Saturday morning and within a few hours, our house was empty, the apartment was shoulder deep in boxes and 2 storage units held the rest of our belongings. We spent Sunday evening cleaning the house for the last time and soaking in the last of the memories there. We pulled away from the driveway exhausted and sad, but also anticipating our new house. More than anything else though, we were worried about William. (See the next post.)