Wednesday, December 19, 2012

It was a long week Part III

DMS went with the carpool to school the next day to teach them how to give the insulin shots. I was coming later to see Lou be Shabbat Abba but I wanted to run some basic errands (like grocery shop) so that we could attempt to get our life back to normal. My parents were coming that weekend for B's party and I wanted to make sure that I had everything I needed before the weekend.

Walking around Trader Joe's I had a mild breakdown.  I started crying in the nut/dried fruit aisle thinking about food for Lou. He was a kid who really liked to eat, who really enjoyed all food and I felt like it was never going to be this simple thing again.  Those little moments of sitting at the kitchen bar, peeling cuties and laughing together had been stolen.  Now it was how many carbs are in a cutie? How many will he eat? How much insulin does he need? I was angry. I was sad. I was really overwhelmed.  I managed to finish the grocery shopping and slip in a target run before I had to be at the school.  Lou was so excited that my parents managed to get there in time and that DMS and I were both there as well.  I had to slip out for a minute because I got all teary but it was mostly tears of happiness, that on Monday he could be in the hospital and Friday he could be Shabbat Abba at school.

We had dinner with my parents and then they kindly excused themselves so we could go to sleep early.  DMS and I were looking a little worse for wear by the end of the week and we were so excited to an early nights rest.  Around 10pm DMS went into Lou's room to check his blood sugar and realized that B had vomited in her crib.  It was a long night with a barfy 2 year old in our bed.

I stayed home on Saturday with a sickly B while DMS and Lou went to synagogue.  Lou said Birkat HaGomel, the blessing for surviving a life-threatening situation, and DMS said it was a very emotional moment. There have been many times over the last week where I have been thankful that it is "just" diabetes.  Being at Children's you quickly realize exactly how much worse it could have been.  We feel much gratitude for this.

The rest of the weekend was great, we had B's 2nd birthday party and all had a wonderful time. Lou went to the Children's museum for a bit in the afternoon and DMS's brother and fiancee surprised us with an afternoon visit.  Sunday night, everyone had left, the house was mostly back in order (save for the Chanukah decorations, pile of presents and diabetes "stuff" that was everywhere) and DMS and I just wanted to relax.  Lou started vomiting that night. It was a long night with a barfy 4.5 year old in our bed.

Monday he was still vomiting.  His blood sugars were low. He looked awful. My baseline worry amped up to a thousand. B had a fever and a hacking cough.  I worried it was bronchitis. It was not a good day.  But somewhere in the middle of that, Lou was ready to take me up on my offer of a trip to the Lego store.  I had told him one of the first few days that we were home, that when he can get his insulin without fighting us or crying, he could go to the Lego store and pick out whatever he wanted.  This was a really big deal- Lou wants nothing more in life then free access to the Lego store. So Monday morning as he was flaling around before his insulin, I reminded him of my offer and he sat still and did not cry.  For lunch, he sat still and did not cry. "Let's go!" he said as he hopped off his chair after lunch.  I was really wary because he had vomited after breakfast and the last thing I needed was something happening on the bus or while we were out. But I wanted him to have the positive reinforcemtn right then so we went, by bus to the lego store downtown.

He walked around the whole store, looking at every display touching every biiiiiiiiig box of Lego there were.  Finally after much discussion he settled on an flatbed and front loader drill set. He was really happy. He vomited when we got home.

I kept both kids home on Tuesday and we visited the pediatrician for B's 2 year check up.  She grew nicely and had clear ears and lungs so her coughing and fever is just a cold.  Thank God.  I couldn't deal with more. I debated if I should say something at the pediatrician's office but I held my tongue because we didn't see our usual doctor. I was a little surprised that while we were at Children's the office never called or came it to see Lou.  I just think when a patient of yours is in the hospital (and you know he's in the hospital) it is just good practice to check in on them and their family. I like our pediatrician, the office is efficient and we can always get in when we need to so I was very disappointed that they never called or came in to check on him.

Today is Wednesday, December 19th.  10 days after Lou was diagnosed with diabetes. Today is the first day that everyone is back at work and school.  I had a lot of anxiety coming into work this morning.  Worried about Lou in  school, worried about them giving him his shots, worried about B's cough, worried about life.  I also had to face work which I had been ignoring for the last week, and had to face an inbox full of well wishing emails that I had been ignoring. But here we are, living our new normal and it doesn't feel that strange anymore. Its been a long week and I hope the next few days are easier but we survived, we are all here. We are all moving on.

It was a long week, Part II

My MIL was scheduled to visit last week anyway. I woke up on Tuesday, got B ready for school and waited for my MIL to arrive from the airport. At 8:15 I took B downstairs to the carpool and had to break the news to our neighbor.  He was devastated. I told him I'd be in touch. I got keys from the doorman for my MIL and caught a cab to the hospital.

Lou seemed ok. Throughout all of this that has been the biggest saving grace- he just seems like himself. He is happy, he is energetic, he still likes cars and super-heroes and his friends and his family.  He still likes to eat, to play, to make jokes and to smile.  He is still the same kid as he was last week. Its such a relief it makes me cry.

The hospital was intense. The education, the jargon, the schedule, the food, coordinating people taking care of B and thanking all the well wishers and making sure DMS was okay and making sure I was okay it just was non-stop. But amazing also because by Wednesday afternoon we could go home.  I was both desperate to leave and terrified of our new life. With Lou being so young the responsibility was all ours and I knew that in my mama bear way, I would do this. But then situations would pop into my head and I would get overwhelmed with trying to figure out the logistics of how to handle it. Then I would think about this being his life forever and my head would explode.  Or I would cry.  Either or.

When we got home Wednesday afternoon, Lou's best friend came over to play. While I just wanted to sit at home with DMS, Lou and B and have a group hug all afternoon, I realized that Lou needed some play time and to blow off some steam from being cooped up in the hospital. DMS being the social bug that he is, also needed to feel people around him.  I showered and went about unpacking and organizing.  I clean when I'm stressed. I consider this a virtue. We made dinner, we counted carbs, we gave insulin, we kept both our children alive for the night.  We were still very stressed.  My MIL was pushing for us to go out once the kids were asleep.  "Go out and don't talk about diabetes," she said, "enjoy yourselves." I gave a dry laugh and said that if weren't aloud to talk about diabetes, it would be a very quiet dinner. 

Thursday the kids rode to school with the regular carpool.  We followed behind and spend the morning meeting with his teachers and the director going over signs of low-blood sugar and how to test his blood sugar and answering whatever questions they had.  They were doing the December birthday celebration that day as well so we stayed for B's party.  After lunch, Lou was tired so we gave him the option of going home early and he said yes. He colored at home and played nicely.  It seemed like we were going to be able to do this.

It was a long week

I called the pediatrician on Monday, December 10.  His behaviors the last few weeks had just been spiraling- everything getting more excessive and more unlike him. The drinking was non-stop, the peeing was non stop, the bed-wetting was every night (with more peeing and drinking), he was hungry in a constant, primal sort of way. He wasn't sleeping well.  He looked ragged.

DMS was out of town that last weekend and I was at my wits end with Lou.  I had nothing else to feed him- he had eaten most of everything.  Trying to get him to stop drinking before bed was a fight that ended in tears. He came into my room, wet and disoriented in the middle of the night and I put him in dry PJs and removed his sheets and let him sleep next to me as had become our new nightly routine. "I'm done," I told DMS, late Sunday night, "this just isn't right. I'm really worried." When DMS confessed that he was a little worried too I became convinced that something was really wrong.  DMS doesn't worry.

I didn't say anything to anyone until I was driving to pick up the kids from pre-school. I didn't want to say it out loud.  I knew that it was true but I didn't want to give the words the power of being spoken. I didn't want to say it aloud and have it be real. I wanted to deny until I could no longer deny what I really already knew. I texted my friend to let her know that I was taking Lou to the pediatrician for diabetes screening.  Her response: F%*#.  Yes.  Yes, indeed.

The urinalysis showed glucose in his urine.  The blood sugar level was 220. She said we had to go to Children's that night.  "I can't give you a firm diagnosis now," the ped said, "they will do more tests at Children's, but you were right to bring him in, all signs point that way." She didn't say the word.  It just hung there between us, heavy and akward.

We went home to light Chanukah candles. DMS came home and the kids were so excited to see him since they hadn't seen him since Saturday. DMS offered to take Lou to Children's and I would stay home with B. I packed an overnight bag for Lou- pajamas, a hoodie, some super-heroes, his blankie and bear and change of clothes for the next day. Lou was super excited to go to the hospital he thought it was going to be this great adventure.  DMS and I just let it play that way, why tell him what was going to happen? Why ruin his excitement before we need to?

They left and I went through the motions of giving B dinner, bathing her and putting her to sleep.  I wanted to hug her, to keep everything the same as it was but I was also so distracted- had they made it through the ER yet? What tests were they doing? Was he handling everything ok? When she was finally asleep, I texted my friend who happens to be a pediatric endocrinologist. I told her that Lou was headed to the ER and that it was most likely diabetes. She wrote back "I'm on it." and I knew she was.

I called my parents. I stress-cleaned the house. I felt nauseous.  I texted DMS a lot. Lou's blood sugar was in the 400s. No ketones. Is it JUST diabetes? I cancelled my work events indefinitely. I stress cleaned some more. Finally, near midnight they were in a room. No one was saying it was diabetes and nothing else but that was the assumption that everyone was running on.  Lou was doing ok. It was time to try and sleep. 

“All journeys eventually end in the same place, home.”
― Chris Geiger