As if a Fifth's Disease scare and a car wreck (which totalled our van, by the way) wasn't enough action in one week, I managed to squeeze in a few more doozies in a seven day span. On Wednesday night, Addison started coming down with a fever. I gave him some ibuprofen and he went to bed. He woke up in the middle of the night with difficulty breathing. He has a chronic problem with trachea spasms, which basically means that when he has a trigger like a cold or runny nose, his throat sometimes swells shut. This has led to more than 5 ambulance rides and many other ER visits, as well as his being readmitted to the NICU shortly after coming home in the beginning. The poor child has been poked, prodded, had his adnoids checked with a scope, had an amazing series of allergy tests run, had a sleep study done, an upper GI series, and many x-rays. Not even the fabulous pediatric pulmonologist at Scottish Rite can give us a reason or a plan. We get a ridiculously inadequate label of "unexplained recurrent croupe" and prescriptions for drugs that may possibly help prevent it. We are told that we need to call 911 when it happens, and that he should grow out of it. Maybe it's a preemie thing.
He has not had an episode in over a year, so we believed that he had outgrown it. The attacks usually happen in the winter. Since we had made it through, we thought it was past us. Well, Wednesday night he sounded bad. We have been able to get him through the night before, when it's not at its worst, with leftover orapred and slowing his breaths. If we can get him through the night, it's usually over. We were able to get him through the very long night and he seemed okay. I kept him out of school on Thursday. Asa and Addison were supposed to take cupcakes to their classes (two classes, 14 kids in each class, simultaneously) on Friday for their birthdays, so I spend Thursday afternoon making cupcakes to ice later on.
Thursday afternoon, Addison was exhausted and I was able to get him down for a nap on the living room floor. Jeff was going to come home and we were supposed to head to Athens to pick up our rental van that the insurance company had set up for us. I went in to check on Addison at about 5:00 and he was having difficulty breathing. He was crying, but could not talk. He was terrified. This had NEVER happened during the day before, and he has NEVER had two episodes in a row like this. Neither his pediatrician nor his pulmonologist had ever witnessed it themselves, except for the one time that I video taped part of it. I called our pediatrician and immediately took him in. They took him back and were horrified at how hard it was for him to breathe. They gave him some steroids and sent him to the hospital ER, along with presciptions for Flovent and Singular that may help to prevent it in the future. I called Jeff to let him know to meet us there.
Now, my pediatrician wanted him to be seen at Scottish Rite. But, that is an hour and a half from us and he needed to be seen immediately, and she wanted to have some x-rays done of his chest and neck ASAP. She sent us to the ER in Walton County, which I have sworn never to go to again after Asa's black widow bite. Our pediatrician swore that she would call ahead and tell them exactly what she wants done, and that she would be remotely handling his care. Off we went to the ER. Asa, Addison, and I walked into the ER at about 6:30. By this time, the steroids were helping a lot and he didn't sound nearly as bad. Our pediatrican was right on the money... she called ahead, they knew who he was and was waiting for him, and they were ready to do the x-rays and give the meds she instructed them to. When we first got there, three people descended onto Addison, who was lying on the hospital bed. One nurse was putting on a pulse ox, one nurse was giving him an IV, and the respiratory therapist was starting a breathing treatment. Asa was very unnerved, and kept coming up to the bed. I tried to let him know that Addison was going to be fine, but I was a little busy trying to let Addison know the same thing. The turnicate was so painful for him and he was horrified by the pain. Later on, when things calmed down, I asked Asa if he was scared. He told me that he thought they were cutting Addison open to fix him. It made me cry, and it has made me cry each time I have told that story.
Now, Addison was doing much better at this point. But, none of us had eaten dinner. Asa had to go potty, but I could not leave Addison in the ER room alone. Addison needed x-rays and I could not go into the x-ray room because I was pregnant. I called Jeff to see where on earth he was. He said that his truck (which had been having difficulty cranking in the last two weeks) HAD to have a new battery right then, so he was stopping by AutoZone before he came. I managed to entertain Asa with some paper towels and a ball point pen, but it wasn't extremely successful. Addison wanted to go home so badly he started tearing up every time he tried to tell me those words. I wanted to go home, too.
I called Jeff back and he told me that he had bought a new battery, but it seemed that the battery was not the issue after all. The AutoZone guy tested the old battery and it was still good. They guessed it was the starter... and it wouldn't start at all now. Jeff was stuck at AutoZone, I was stuck at the hospital, and Asa was stuck with me. The pediatrician wanted them to monitor Addison for another four hours. I asked and the four hours did not include "time served". If he was okay at the end of those four hours he could be discharged instead of transferred to Scottish Rite. The hospital is tiny and the cafeteria was closed (but we could have some graham crackers for dinner... did they really offer a pregnant woman graham crackers to eat instead of FOOD?!?!) I gave Addison some of the crackers and some milk and I called Jeff to get his status.
Jeff had finally gotten the truck cranked, but he did not think he could turn it off for fear he would be stuck again. I told him to just drive through the ambulance spot, which had double doors right near our room. He did, left the car running, and I shuffled Asa out to him. Asa and Jeff finished the night with a stop at Zaxby's and Krystal, because Jeff prematurely promised a milkshake without referring to the Zaxby's menu first. This left me and Addison, a pack of graham crackers, and no t.v.. I did what any pregnant momma would do... I ordered a pizza. The delivery man brought one very crappy, but very appreciated, pizza straight to our ER room. Another crisis diverted. However, I still had 28 cupcakes to ice before the preschool birthday party that was rapidly approaching. Addison was bound and determined not to miss his party, and I promised him that even if he missed the rest of the day, I woudl take him and some magically decorated cupcakes just for the event. Now, with what energy would I accomplish this?
We were discharged at 11:00 and made it home by 11:30. Addison went to bed and slept fairly well. I iced the cupcakes the next morning, added some sprinkles, and made it to preschool on time. Now, we did not pick up our rental car last night. I didn't even make it to the tow lot to clean out my van that had been totalled. Jeff stayed home Friday and cleaned out the van while I hung out at preschool just in case Addison needed me. Afterward, we went and rented the van. Whew.
The boys have been looking forward to their friend Kaeden coming over on Saturday after the baseball trophy ceremony. We had made plans for Kaeden to spend the night, which was a first for all the boys. I woke up at 2:30am on Saturday to banging on the wall. I had told Addison to bang on the wall if he couldn't yell for me or get out of bed, and bless his heart, he did. He was sounding very bad. Our pedatrician told us that we needed to go to Scottish Rite if he had another episode. Now, at 2:30 in the morning I'm wondering... how on earth do you get a little boy who can't breathe to a hospital an hour and a half away? I called 911 and the EMT's took Addison by ambulance to our local hospital (not the same one as before, which was closer to our pediatricians office, but an equally small and equally scary one near our house). I called our pediatrician and left a voice mail that we were headed out again, this time via ambulance.
I don't know if it's because I'm pregnant or because he's five now, but the EMT's had me drive to the hospital separately this time. All the other times I have ridden with him. I drove right behind the ambulance and could see Addison propped up through the window. I made sure to stay close, but I figured that since I was in a rental car, he wouldn't recognize it. I waved the whole time anyways, just in case. When I got to the hospital, I made sure to get in before the ambulance unloaded. Addison was doing much better when he arrived. They had given him a breathing treatment of albuterol, which usually doesn't help at all. This was something different, it wasn't just the trachea-spasms which only really resond to steroids (oral, IV, or in a breathing treatment). Addison told me that he could see me waving through the window as he rode.
The hospital did another set of x-rays. This time, he did show some bronchitis. That would explain why he responded to the albuterol. I was amazed that the last hospital trip did not send us home with orapred (steroid) for the typical 5 days. If they had, like they usually did, would we be here now? The ER helped to get his weezing under control and he was able to sleep for a while. We were discharged at 5:30am with prescriptions for orapred, an antibiotic, and albuterol for our nebulizer. We came home and crashed. A few hours later, at about 8:30, our fabulous pediatrician called to see how things went. I told her what had happened and she said that she wanted to go over all of the presciptions that they gave because she did not trust that hospital. I felt great hearing that she would be on top of things yet again. However, I was running on very little sleep and she could tell. She told me to go back to sleep and call me when I woke up.
When I woke up, I did call her and she changed his antibiotic to a different one. I took the prescriptions to the pharmacy and dropped them all off. All five for Addison and one for me. Then, I went home to straighten up. Jeff and Randy were working on the house that day and were going out for an Ace Hardware run. I asked Jeff to pick up the presciptions for me and Addison. Later on, I realized that he had only come home with one for me and one for Addison. Where were the other four?? I called CVS and sure enough, they were there. Some idiot didn't even check to see if the kid had more than one prescription sitting there in the bin. Ridiculous. I was running late for the boys' ballgame, which I was working concession stand for. Addison sat in the stands while Asa played, and I did my concession duty. I even had my fruit salad made for the league-wide picnic afterwards.
After the game and trophies, Kaeden rode back to our house. We decided that we would all go out and eat pizza at Mellow Mushroom, and swing by and pick up the rest of the prescriptions from CVS. When we arrived at CVS at 6:14 on Saturday, it was closed. Closed. The medicines that would keep my son out of the ER for the third time in a row were locked behind the metal bars surrounding the pharmacy. It was 6:25, and I started to panic. I called Publix to see what time their pharmacy closed... 7:00. By this time, it was 6:30. I called my (wonderful, fabulous) pediatrician and left a voice mail explaining what had happened, and that we had to have the orapred and albuterol for the nebulizer or Addison would surely be back to the ER. As I waited and hoped to hear back from her, I called Publix and explained to the pharmacist what was going on. He needed these. It was an emergency. Please help.
Asa, Addison, Kaeden, and Jeff sat in Mellow Mushroom while I ran around the outside of the building like a lunatic with a cell phone in my hand. And, it rang. Our pediatrician called and said that she had called them in over at Publix, which was three minutes away. I dashed in and picked them up... showering them with thanks. As soon as I got home, I ordered a bouquet of yellow and white daisies for our amazing pediatrician. She hopefully received them today.
Addison has been doing much better, but still not back up to his old chipper self. He enjoyed his birthday with Hal, Jen, and Mim at the bowling alley and Long Horn. The party will be in a couple weeks. It is a blessing that the party was not this weekend! I will be making another appoitment with the pulmonologist, not that I expect him to do anything or give any amazing insight. This has been so frustrating to go on and on for years with no game plan other than "call 911" and "take these drugs that may or may not help". Hopefully, we will get through these next few days without another incident.... but I'm keeping a bag packed just in case.