William's Swollen Lymph Node

A week ago Thursday, when William climbed into the car, I could see his giant swollen lymph node in my rearview mirror.  I asked him if it hurt, and he said no, but after a google search of all the terrible things that it could be, I made him an appointment the next morning.  

The appointment wasn't until the afternoon, and when I went to pick him up from school, he wasn't in his classroom, and he wasn't in the office.  It turns out that he complained of pain while swallowing to his teacher just before I arrived and he was going to be checked out by the stand in nurse.

When we arrived at her office, he was extremely sedate and sat or laid each room we were moved to.  She tested him for strep, which came back positive, and he also had a touch of pneumonia, in the lower region of one of his lungs.

She prescribed him the 2nd tier of antibiotic, because she wanted to make sure he kicked the strep.  She had see more cases of pneumonia at her practice in the past three months, than in the past 5 years combined.   She said that he would probably crash, then slowly improve, as he coughed, but if he did not improve in 48 hours, not to wait for her and instead go to the urgent care.

The medicine itself wasn't bad and William had no trouble with it.  He did crash on Saturday, and slept somewhere around 16 hours.  On Sunday he seemed to have improved drastically, so we continued with our plan to celebrate daddy's birthday at chuck e cheese.

He started showing signs of slowing down, which was understandable considering all he was fighting, but in the car he fell asleep.  Billy and I discussed whether or not this merited a weekend  trip to the hospital.  When we came into the house, he curled up in the chair closest to the door, and fell asleep.  Ultimately, I ended up taking him to the urgent care, but they sent us along to the ER since they didn't have any imaging machines.

The wait in the lobby was almost two hours, then they gave him a room, but he wasn't allowed to eat.  They drew blood, and I gave a summary of his complex medical history, a few times.  The resident didn't correct me, but was surprised that I really meant hypophosphatasia and not hypophosphatemia.

He was still not allowed to eat, until they were certain that he wouldn't need an ultrasound.  The strep test came back negative (yay!) but he still had pneumonia in his lung.  He was finally cleared to eat, and then he slept.

As late as it was, I crawled in next to him, since he wasn't hooked up to anything.  He was sound asleep and I was almost asleep when they gave us the go ahead to leave.  They gave him the next tier antibiotic which we were able to procure from the 24-hour pharmacy in the lobby.

It is foul smelling, so after each dose (3x a day,) he gets some ice cream.  He stayed 'home' with me on Monday, and was able to rest some.  On Tuesday,  he went to school, happily, I did give his teacher the run down, and apologized, but my chaperone commitment fell at a poor time. = ( The ER doctor wanted us to follow up with his regular doctor on Tuesday,  so we made it happen.

He was still not himself, and was resting in the back of the classroom when I went to collect him.  The doctor was concerned and gave him a steroid, and prescription for an inhaler, but before we left their office (in a huge rush) he had a breathing treatment.  He thought the 'smoke' coming out of the sides of the mask was entertaining.

After 5 days on his newest meds, I'm pleased to report that today's follow up was wonderful.  She said his lungs sound much improved, and his energy level is rebounding quickly.

Thankful for good doctors and a healing little boy.  oh, and that my mom is back.  so.thankful.

later days

William goes to the ER, again.

William has been acting like he just cannot burn his energy fast enough.  He bounces around, and up, and down, and back and forth.  For weeks I've been warning him not to get hurt, since we had a school spirit night on the calendar at the skating rink.

He did well, and it was the day of, when the school called.  He'd fallen on some playground equipment, spent time in the office being monitored, and then was sent back to class.  When I picked him up at the end of the day, he was my normal, bouncy boy.

At home, after homework, all 5 were wound up so tight in anticipation of skating.  Then, the inevitable happened.  He and Alice were roughhousing in the living room, and he hit his head again.  

This time his body was not nearly as forgiving.  He was acting tired, but roused himself to get in the car for the party, but when he threw up in the car, we knew it was time to take him in.

So, while Billy took the girls skating, William and I hung out in the waiting room.  He was smiling not long after we arrived, ate most of the sandwich I'd brought for dinner (since we were supposed to eat pizza at the party) and had returned to his normal self.

After triage measured him, and updated his file, we were sent back to the waiting room.  Not long after, they sent us back for his CT Scan.  He did really well laying still, considering he was completely conscious.

We were sent back to the waiting area a third time, and when we were called back, we ended up in the exact same room as last year.

The doctor & nurses came through. Once the results of the scan came back, they indicated that it may be a mild concussion at most, but we were free to go.  He needed to take it easy over the weekend, so he had an extra day off on Friday.

I'm so thankful that he was less severe than last year, but next autumn he might be wearing a helmet leading up to the first skate night.

later days

William's ER visit

While this is not exactly part of William's battle with HPP, I do mention it, so I'm including the usual links: This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia.

On Sunday night, as we were saying goodbye to the Rosenthals, I saw William hanging upside down from the handrail.  Naturally, I fussed at him as I took him down and told him not to do it, because he might get hurt.  I walked into the other room to locate a pair of missing shoes, when I heard a thud, a short pause, and then a wail. I came out to find him lying spread eagle at the bottom of the stairs.  While none of us saw what happened, I could wager a pretty sound guess.

I was comforting William as the Rosenthals left, but was a little worried about William, since he fell asleep on the floor right next to the door after he finished crying.  Since it was well past bedtime, I was trying to get the girls ready for bed, but told Billy, that if William were to throw up, I was driving him to the ER. The words had barely passed my lips when he rolled over and began retching. = (

All 4 girls were super helpful and brought me towels, clothes, buckets, shoes, whatever I asked for.  Billy loaded William into the car and I grabbed a few essentials (like a phone charger and socks.)  Fortunately for all of us, my mom had just made the 3 day trip up from Texas and was on call to be me for my girls at home the next morning.

We had to go through a metal detector* on our way into the ER, which was a first for me, but they didn't delay. As we checked in, they offered William a wheelchair, which I graciously accepted, since I had carried him from the parking garage. The waiting room was busy, but we were sent on through to the pediatric waiting room.

There were a few patients in front of William, but we did not wait long.  I sent Billy some updates, and then we were taken to the triage.  When we stood William up to get his weight, he threw up again. = (

The nurse found him a room where we waited to see the doctor.

When the doctor came in, and started testing his neurological functions, he threw up a third time.  This was very concerning for her, which in turn made me quite nervous.

Just before 11pm, he had his first CT scan.  On our way, my phone chimed, Billy had not been getting my updates.  I started emailing him, sadly it was all bad news.

Back in his tiny room, the doctor came in and told me that he had a fractured skull, and a crescent shaped bleeding in his head, a subdural hematoma.  They paged the neurosurgeon to find out whether or not he would need to be moved to Grand Rapids (there is a dedicated children's' hospital there.)  They set him up with an IV and monitors.  He dozed in an out of consciousness.  He had developed quite a large bump on the back of his skull. = (

Once the doctor heard back from the surgeon, the instructions were to wait and repeat the scan in 6 hours.  They did one more scan before he could rest, to check for other trauma on his chest and hips.  Finally, some good news, it was just his head.

Sometime around 3am, I joined him in his tiny ER bed, because I was unable sleep in the provided chairs.  He was such a sweet boy and made a spot just for me.  The nurse brought me in a pillow and blanket too. Despite the recommendation to avoid this hospital for our pediatric needs (except in emergency) I was super impressed with their pediatric staff!

At 5am, almost exactly, they repeated the scan.  The bleeding had almost completely resolved, and was now a very minor epidural hematoma.

We were able to doze another hour or so before they moved him up to the PICU ward.  But this little boy was one on the mend:

The neurosurgeon on staff, as well as the senior staff doctor, resident doctor and student doctor all came in to take a look at William and test his reflexes.  He was much closer to being my normal little boy than he was the night before.

Sarah came by bearing gifts of coffee and some strawberry shortcake DVDs from my car!  Morning talk shows are not very entertaining for recovering boys, and that's what I had left in the car from bygone days when it was the family vehicle. = )

4700 ALP (marked "high") for reference: 149-369 is normal for his age

After the doctors finish their rounds, they discuss each case in a conference room, bringing in the parent, if available.  The only thing that did not impress me was when the lead doctor wanted me to look through a book of maladies, to see if William has a syndrome that has not been diagnosed.**  It was like the cri-du-chat episode all over again.  (spoiler: the twins do not have cri-du-chat)

When the doctor asked me about the hypophophatasia, he tried to correct me, because William's ALP level is so high, that he cannot possibly have a hypo- form of the condition.  It was quickly righted by mention of his medication, but frustrating that I have to go through it over and over again with insurance all year, then with the doctor.  I am thankful that he clarified, but I was easily vexed, from a night of little rest, and relief that William had improved so drastically in a short period of time.

He also pointed out that the fracture was along one of his old craniotomy lines.  His bone is apparently thinner than other patients this doctor has seen, which is not surprising.

After the rounds concluded, a child life specialist came by, allowing William to play in the room for a bit, pick out a book, a box of toys to take with him to his room, and some William picked movies!

When we returned to his space, he had been cleared to eat, and his food was on it's way! 

Avia and his sisters came up to visit and play, and bring me a non-hospital lunch!  Having his sisters around made him feel more like himself, but also tuckered him out. 

After they left and he finished his lunch, he fell into such a deep sleep, that the visiting surgeon had trouble rousing him.  While my fears were mostly abated, this rest triggered another bought of fear, and when the doctors asked me to weigh in on going home, I agreed that one more night would be in order.

After a nice, lengthy nap, William woke up refreshed, and begging to leave.  He asked me when he could take off his pulseox monitor, and I told him that it would come off when he was discharged.  He replied "but I am charged!"

He stayed up watching his movies on repeat for the rest of the evening, and finally at 11, I told him it was lights out.  Despite my history of not  sleeping well in hospitals, I was out cold.  William got a roommate in the night, and I didn't even hear them come in!  I guess the poor sleep the previous night, combined with the security that he was being monitored by professionals, allowed me a good night's rest.

The next morning, he was 100% back to normal.  The bump on his head was minimal, and rounds confirmed that he was ready to roll.  My mom got my girls up and out the door a second time, so that I could be there with him.

Respiratory came in with bubbles to make sure that his lungs stayed clear.

He had to do one final CT scan at 10am, but it came back with just a remnant of his mishap, and of course the fracture.

His nurse, Dee, was the same as the previous day, and she was fantastic!  She worked  to make sure that we could get out of there as soon as possible.  He was excited to have all of his monitors removed , and be able to put on regular clothes again!

She even ordered a copy of the CT scans for us to take to his day of appointments on Wednesday.

The hospital is right in downtown Lansing, and has a nice view of the capital from the west facing windows.

Here's hoping that we can avoid the ER for a while.  I am pleased to report, he has not climbed back up on the railing since we came home.  If I'm a little more grey the next time you see me, William is the reason.

later days

<what happened previously
what happened next>

*I'm not sure if it's a permanent installation or not, but I read about a shooting in a hospital in Kalamazoo (or somewhere) in the past few weeks.

** William has a very gaunt appearance, but he has my features and also bears a striking resemblance to Alice.  Hypophosphatasia is William's problem.  For some reason, doctors cannot simply accept this diagnosis, and keep attempting to add labels.

edited 10/22/17 to add forgotten details!