We had a great spring break. Started last Sunday with a game and pizza night with our church folks. We then had a little girl (age 6) from our church stay a few days with us.
Monday we went bowling. A friend and nurse Melody gave Manny his own bowling ball. He loves bowling.
Tuesday I took the 7 kids to Busch Gardens. Manny was most enthralled with the sky buckets and would have stayed in it all day if they would have let him.
Wednesday we stayed home to recoop. The kids played a marathon of dancing games on the Wii. Manny loved playing Mario and Sonic and making the characters lose. He cracks up.
Thursday we got a ramp so Big Red could go in the Van. It's a 3 person job to do it and there are moments of panic but we got it.
Thursday night we went to the IAFF (Firefighters) dinner where I gave a speech about Manny and he was announced as the MDA State Goodwill Ambassador. Brooklyn, age 6, was announced as the Local Ambassador. She did a sweet ballet routine in her wheelchair. Together, they took dozens of pictures with firefighters and handed out their business cards.
"Make a Muscle. Make a difference."
With our Pinellas Park guys.
Friday night was the Chili Blaze. It's a fundraiser put on by Local 2193 Firefighters and all proceeds go to the MDA. Manny was given his first football jersey and named an honorary T-Bird. Even the number selected was special and meaningful.
Do not try this at home. Nick (the head of the Chili Blaze) asked for a ride since he'd given Manny a ride on his firetruck. Manny was happy to help out. He got it turned up to full speed and slung him off. (Big Red, Manny and Nick were all fine. The grass not so much.) It was funny!
The end of the night as we were winding down. He is wearing his Pinellas Park IAFF Firefighter shirt and holding glow sticks.
Saturday night was church and potluck. During the service I noticed I had a sore throat. By bedtime, it was pretty bad and I took medicine. Manny was fine. By 1am, he was coughing pretty bad and needed suction all through the night. (This didn't help my illness any.)
Sunday morning he had a mild fever and still had the cough despite being on bipap all night. (For the past 9 months, that was enough.)
3pm, he had a 104.2 temp and went into some pretty significant respiratory distress. I grabbed our bags and jumped in the van. I called the hospitalist "Doc" on our way over to let him know we needed a room.
This is right before the episode.
The first thing Manny asked is if he is going to be getting a "pinch" (his word for an IV). I told him no since his line was working. He then switched to "no nose" (his way of saying he didn't want a viral respiratory panel nasal swab). And because I didn't tell him, "No, we aren't doing that." He knew we were.
By 5pm we were settled in a room. Orders were put in. At 6pm, the nurse went to flush so she could draw his labs. The line broke. There's a distinct "pop" that happens. I've heard it 6 times now. Unmistakable sound. The nurse wasn't sure it broke. I was. She flushed again so she could see the hole. She went to go get a hemostat to protect blood from coming out or air getting in. But before she could get back, he was bleeding profusely. (His heart rate was elevated and pumping out quickly.) I pinched the line and stopped it from bleeding.
As soon as it popped, he immediately knew too. He started saying, "No pinch!" He is too smart. He knows what that meant. And it did. Our IV team doesn't work on Sundays so I asked, "Who is your best stick?"
I'm thrilled to report that the nurse was able to get it on the very first stick. It's not all that easy to do with Manny. We did the nasal swab all at the same time and the "owies" were all over.
He was asleep by 7 pm and immediately had troubles breathing. He went on bipap, which is usually enough. It wasn't. We added oxygen. More oxygen. More oxygen. The breathing treatments weren't helping. repositioning wasn't helping. Suctioning wasn't helping. He looked very very sick. I felt like we were headed to ICU.
Eventually about midnight, he was on 8 liters of oxygen (which is a lot and not super great for a kid with a neuromuscular disorder because if oxygen is going in but nothing is sucking it out, the Co2 builds up and causes new troubles.). But he couldn't get above 80's for his pulse ox. (He is normally 98-100 without oxygen.)
In talking with the nurses and respiratory therapist, we knew we had to do something different. So we tried IPV. (For those who would like to learn more about that ... here is a user friendly, semi easy to read version of what this is... http://en.wikipedia.org/wiki/IPV)
And it worked. He started looking less troubled to breathe. He slowed down his breathing and heart rate. He was able to go down to 6 liters of oxygen.
Meanwhile, he has this fever. It spikes very high. Tylenol isn't bringing it down. We finally had to do that in conjunction with Toradol to be able to handle the fever. Even still, Tylenol can only be given every 4 hours and Toradol every 6. And his fevers are more frequent than that. I can tell by his breathing how high his temp is getting.
The night was long. He couldn't get comfortable. He had often breathing treatments and medicines. So we were awakened a lot.
Monday morning. His line got repaired. This is likely the last time we can repair it. We will have to do something different. I talked to the IV team about what is next. We discussed options. Decisions haven't been made but we will see where to go from here.
But for now (well, as of 2:30 pm) his line is usable again. And that buys us some time to decide.
As I type this at 1pm, he's still asleep. He's been awake for 5-15 minutes here and there but right back to sleep. He just looks exhausted.
The biggest issue for him is that he's scared. Recently he had a very traumatic hospital experience. And he is just more anxious than normal. Poor little fella freaks out any time anyone opens the door. So he asked me to make him a sign. I complied. He can read so he knew if I was writing it right.
Here's the conversation:
M: I want a sign on the door.
B: Ok. What should it say?
M: Don't hurt Manny.
B: Do you want it to say Do Not?
B: OK, so "Don't hurt Manny, please?"
M: No, only Don't hurt Manny.
B: Ok. Anything else?
M: No nose. No pinch. No owies.
I wrote out each word as he said it. And then he told me exactly where to tape the sign.
I'm shocked at how you can go from picture one to picture two so quickly.
So I say, Dear Lord, honor this little man's request. That's my heart's cry right now. He is already scared and distressed enough. Heal him. Comfort him. And bring us back home quickly.