Wednesday, June 17, 2015

Malcolm and the Mean Muscle Spasms

I last left you late Saturday night, which was Malcolm’s second night home from the hospital. Little did I know that it was going to be the worst night yet. Jordan offered to take couch duty again, knowing that I would be sleeping with Malcolm the rest of the week so that he could rest before work. Malcolm is having muscle spasms that are causing his entire body to seize up. Some of them are more like small shivers or tremors, but with others you can see his entire body jolt, from curled toes to balled fists. Some of the smaller tremors he can sleep through, but the large jolts wake him violently and you can feel the tension in his limbs for maybe 30 seconds.

On Saturday, he was averaging a small tremor every minute, but the larger spasms were coming every three to four minutes, and with each one he was crying out in sort of a scream. I could hear him crying from our master bedroom upstairs, and finally, I came to relieve Jordan because Malcolm was calling out, “Momma, Momma.” I laid next to him, he squeezed my hand with each spasm, and we just cried together. Around 3:00 a.m., I decided to call the hospital hotline number they had given us upon discharge.

When the orthopedic resident on call returned my message, he said that spasms are really common because the muscle can’t get tension on the broken bone. He indicated that the whole-body reaction is just in response to the spasm in the leg. He told me they generally don’t like to give medication for spasms in children Malcolm’s age, but that the spasms could also be an indicator that we’re not staying ahead of his pain. I told him that we’d been alternating the prescribed hydrocodone with acetaminophen, with Motrin at the recommended four hour interval. He said they sometimes prescribe an additional medication, but he would need to consult directly with Malcolm’s orthopedic surgeon on Monday. He also said that his exhaustion may be exacerbating the issue. It's a viscous cycle where the spasms themselves are keeping him from getting the rest he needs to minimize their occurrence. 

The orthopaedic resident asked if we thought Malcolm’s leg was swelling in the cast. I told him we had no reason to believe that it was because he’d been consistently moving his foot (tapping it to the music of Blue’s Clues when he was watching it earlier in the evening). He said that if we do feel like swelling is causing him pain, that we could come into the emergency room and they could slit the cast, but otherwise there’s not much they can do. As you can imagine, none of this was particularly comforting to me when I’d been listening to my baby scream in agony for hours on end. 

My parents live in Scotland, which is a six hour time difference, so I called them just to vent my desperation after hanging up with the hospital. My Aunt and twin cousins are visiting my parents next week, and my mom is meeting them in London before touring several other cities, which is why she didn't originally plan to come. Before any of this happened, Jordan’s brother had already planned a visit to arrive here Tuesday afternoon and leave on Friday morning. I knew Ryan would be a big help, but I was explaining to my parents how stressed I was about being on my own on Monday and most of Friday, since we clearly don't have a handle on managing Malcolm's pain.

I truly didn't expect my mom to alter her plans and was just venting my helplessness and frustration. She called me back within minutes and had found a ticket for a flight that literally took off less than two hours from that moment. When she offered to come for the week, I felt a wave of relief rush over me and just started bawling (happy tears)!

On Sunday afternoon, Jordan and I each took turns holding Malcolm in our living room recliner so that he could have a chance to sit up a bit, plus it seemed to soothe him being in our arms. Jordan had a little luck holding Malcolm’s hands in place on his chest to minimize his reaction to the spasms and help him rest. He took two naps this way, each lasting around an hour. The orthopaedic resident called back during Malcolm’s second nap to see if there had been any improvement, and I was able to pass on this report.

In the evening, things had cooled off outside enough to take a dusk ride around the neighborhood in his wagon. He seemed to enjoy getting outdoors and even fell asleep in the wagon for a bit. We think the bumps in the pavement may have distracted him from his bodily tremors. Unfortunately, since then, it’s either been raining or way too hot to take him out!

My mom arrived on the scene around 11:00 p.m. on Sunday night, and immediately crawled into Malcolm’s bed in the living room floor. Sleeping on either side of him, we found that if we adjusted his body when he startled, it seemed to buy us more time before the next large jolt. Malcolm continued to spasm and startle, and I don't know if he's just getting used to it, but it didn't seem to upset or disturb him as much as it did the night before. I am just so thankful for her comforting presence.

Monday morning, Jordan had to return to work, and our sweet pastor’s wife and her daughter came by to visit and bring us an amazing salad and grilled chicken for dinner! Monday was a decent day for Malcolm, but Alice was fussy and surprised us all by cutting her first tooth. I thought I felt a bump, and I could hardly believe my eyes when I saw the tell-tale little white dot that is the top of her lower right canine – of all the first teeth to come in! She is truly her own person, and will not be completely outshined by big brother!

The orthopaedic nurse practitioner called Monday afternoon to check in. We reported that his night was better, but still not great, but since there had been some improvement, we felt comfortable keeping our appointment for Wednesday morning, rather than moving it up. The biggest hitch we had on Monday was a tornado warning issued at 4:51 p.m. with orders to seek immediate shelter. Fortunately, Jordan had moved Malcolm’s wagon to the basement after our walk on Friday, so we were able to get him settled in it, then pull him into the basement bathroom! He actually fell asleep while we were waiting for the “all clear” and Alice seemed to think sitting in her bouncer in the shower was kind of exciting!

 This picture and the one below it were taken seconds apart!

Mom volunteered for Malcolm-duty Monday night so that Jordan and I could both get a little rest. We went upstairs around 9:00 p.m. and were planning to watch Games of Thrones together, but I don’t think I even made it through the first scene before I just couldn’t hold my eyelids open anymore. Mom said Malcolm slept pretty soundly from 9:30 to 11:30 p.m., but woke just about every hour after that. Although, even that was an improvement from previous nights.

 This is how Malcolm flexes when we ask if we can have tickets to the gun show!

 Malcolm needed a Band-Aid where they had his IV on his left arm, but he wanted an extra one for his right hand!

Tuesday morning both kiddos seemed comfortable enough to let me pick up the house just a bit. One of my mom’s group friends dropped by with her two kiddos to deliver a present for Malcolm – a fun remote control car he can use while stuck in bed – and enjoy a Chic-fil-a lunch while visiting with us. Malcolm’s appetite has been almost non-existent (about the only thing he wants to eat is applesauce), so I was thrilled to see him gobble down his chicken nuggets and ketchup (with fries on the side ;)). He’d also managed to eat an entire banana at breakfast that morning!

 We made a paper chain to count down the days remaining in his cast!

Right as our friends were leaving, Malcolm’s Uncle Ryan arrived in his cab. After getting him settled in, my mom took the opportunity to rest since she had been up most of the night before. We tried to get Malcolm to nap at the same time, but it was short-lived thanks to continued spasms. Instead, Malcolm taught Ry about all his favorite shows – Blue’s Clues, Wild Kratts, and Super Why. Ryan is going to be an expert in children’s programming by the time he leaves.

Unfortunately, Malcolm’s appetite didn’t last until dinner and, other than a few strawberries, he mostly picked at his food. To get a reprieve from non-stop Blue’s Clues, Jordan and Ryan watched the basketball game in the basement, while mom and I got Malcolm and Alice tucked in for the night. Mom took night shift again, and unfortunately, experienced a night similar to the one I had on Saturday when I originally called her. She reported that he startled almost constantly, that the spasms seemed to last a long time, during which he would hold both hands above his head and ball his fists. She said, even if you added each of the catnaps together, she doubts he slept more than one hour the entire night.

Malcolm had his follow-up with his orthopaedic surgeon at 9:30 a.m. this morning. Since my mom had been with him the last two nights to witness exactly what was going on, I asked if she would accompany me to speak to the doctor, and Ryan could stay with Alice. Before seeing the doctor, they took new x-rays to check his progress. The good news is, the doctor came in and said that the x-rays looked good. She said they always expect a little shifting, but it was well within the acceptable levels for his age. Then she asked us how he’s doing, which is where the appointment went downhill and got frustrating…

We started to explain, as I did above, that he had a really rough night, and truly hasn’t had a stretch of sleep longer than two hours at a time since this happened a week ago, other than the anesthesia-induced sleep immediately following surgery. My mom tried to show her what his arms look like when he spasms, but she immediately seemed to get combative. She said that it couldn’t be that bad because she’s had her nurse checking on us. She made it sound like her nurse has been calling every 30 minutes, when in reality, we hadn’t heard from her since the one time on Monday! I responded that when we spoke with her nurse, it seemed as though there had been an improvement, but that last night it seemed like he had regressed.

She then asked when he’d last had medication and we said that we’d given him the hydrocodone at 6:30 this morning. She jumped on that and said that we should save the hydrocodone until we want him to go to sleep and that now his body is fighting the sedative effect of the medication during the daytime. We tried to explain that he was so uncomfortable and exhausted after getting no sleep last night that we wanted him to have some relief this morning. I’ve been keeping a record of when we’ve administered medication in my phone. I told her we gave him the hydrocodone at 6:40 last night, but he was still having trouble sleeping, so we went ahead and gave Motrin at 10:40.

She asked how he does during the day, and I said that he does pretty well until he tries to nap. One of Jordan’s aunts is a physical therapist and had mentioned that Malcolm’s spasms should decrease as he actively wiggles his feet more and improves his circulation. On the way to the appointment, my mom and I had commented that this seems consistent with what we’ve observed – when he’s active during the day, the spasming happens less, versus when he’s trying to relax and isn’t moving. As I started to mention this to the doctor, all I got out was what Jordan’s aunt had said before she jumped in and said that she disagrees and didn’t let me finish my thought as to why I brought it up in the first place (just that it was consistent with our observation). As I left the appointment, I started to wonder if she thinks I’m moving his feet at night or something and that’s keeping him awake. I just felt like she wasn’t listening!

She then went on a rant about how if he’s doing well during the day we don’t need to be giving him medication. She didn’t even give me the opportunity to tell her that we haven’t been dosing him unnecessarily, or bother looking at the record I provided to see that before the 6:40 nighttime dose, he hadn’t had anything since 11:00 a.m. and before that 4:30 a.m.!

She agreed that what we were describing did sound like muscle spasms, and said that we can treat the spasms separately from the pain, which I agreed was good. She prescribed Valium for the muscles spasms, and instructed us to give the Valium with the Motrin just before his naptime at 1:30 and his bedtime at 7:30, and to just use the hydrocodone if he wakes up in the middle of the night to help him get back to sleep. As she was explaining this, Malcolm, who was sleeping in his wagon, seized up with a spasm. I pointed and said, “oh, did you see that?” and the doctor pointed at her eyes and gruffly said, “stay with me here.” By that point I was pretty fed up.

I honestly think a lot of her poor bedside manner had to do with overscheduling. As we were checking into the appointment, three other patients checked in to see her as well. We were literally with her for less than five minutes. She just seemed like she was in a hurry and couldn’t be bothered to actively listen to our concerns. Instead, she just picked up a few pieces of what we said that she seemed to disagree with, rather than getting the big picture. I know that she sees a lot of patients in a day, and probably deals with this all the time, but I’m Malcolm’s mommy and he’s my top priority, and he deserves her full attention when we’re there for his appointments. I know I look young (but even young moms deserve respect), but I’m an attentive mother and I’m the one laying with him, stroking his hair, holding his hand, listening to him scream, and feeling his pain 24-7. I have two advanced degrees and I’m not a complete idiot and am capable of carefully listening to and following her instructions AND noticing my son spasming without being reprimanded like child.

That’s another unfortunate aspect of an emergency situation is you don’t have the opportunity to go shopping for physicians. This is the first negative experience I’ve ever had with a Loyola physician (I love, love our pediatrician and the pediatric urologist who performed Malcolm’s two previous surgeries), so I’m going to try to give her the benefit of the doubt and assume that next week will be better. At the end of the day, she did prescribe a medication for the spasms, which was my main concern, so the end result was what I wanted, but I would’ve appreciated a bit more sensitivity on her part.

I am happy to report that we filled the prescription, gave it to Malcolm, per her instructions, before his nap this afternoon, and he is STILL sleeping – PRAISE THE LORD! He’s been asleep now for about two and a half hours, and only spasmed three times, but they haven’t been bad enough to fully wake him! Thank you all for your continued prayers!

Also – Happy fourth monthiversary to Alice Jane!!! One of these days I’ll write out her birth story!

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