Rewind to April 2002 when Robbie was 4 months old, and that was the start of our journey into the world of asthma. He came down with RSV and after multiple visits to the doctor’s office and many sleepless nights, it eventually turned into pneumonia and we found ourselves spending 4 nights at Children’s Hospital. It was so difficult to see my sweet baby boy trapped in the crib where I couldn’t hold him as he was connected to oxygen and more monitors than I could count. Ashley was 2 at the time and was unable to come to the hospital (she had a cold) so Mike stayed with her while I spent 4 days by Robbie’s cribside. He eventually went home but continued to spend a month on oxygen until he fully recovered.
Now that he is 9, it seems like so long ago. We’ve had numerous episodes of pneumonia over the years and are pros at using inhalers and nebulizers. I often laugh when asked if he is allergic to any medications because it seems like he has been on everything imaginable at some point. I remember the days when he used to cry and cry about having a neb treatment and for the past few years it’s just become a way of life and he watches tv or plays a video game during the 10-15 minutes that it takes to get a treatment. He knows when to pull himself out of a baseball or football game to get an inhaler if needed, as well as going to the clinic at school if gym class or recess aggravate his breathing. The problem is that Robbie has had asthma since he was an infant and because of that, he doesn’t know what it feels like to be completely well. He knows that he feels worse when he has a cold or the weather changes or any other number of environmental factors, but he has never known what it feels like to breathe at 100% lung capacity.
Now we fast forward to March 2011. Robbie had his flu shot this year. Robbie ALWAYS gets his flu shot because he is high-risk. However, sometimes new flu strains come out and the flu shot has not been developed to protect us from them yet. This is what happened to Robbie when he came down with Influenza B at the beginning of March. He was immediately treated with Tamiflu (the whole family was), as well as Prednisone to protect his lungs. The flu was miserable for my poor baby boy and I’ve never seen him so physically distraught and in pain before. It eventually passed after a week and he completed his course of Tamiflu and Prednisone. Even as the flu cleared up, I could still tell that his nagging, congested cough was still hanging around so I had him doing neb treatments once a day or so. He has never been one to wake up in the middle of the night to say that he needed his inhaler but that started happening on March 12th & 13th so I started keeping a closer eye on him. Then on the morning of March 14th he woke up for school and said that he was having difficulty breathing. I had him take a neb and asked if he thought he could get through the school day because he had already missed so much this year (with pneumonia in Nov and the recent bout of the flu) and he said yes and off he went.
Monday’s are the only days that I go into the office because I have back to back meetings. This particular Monday, Mike was also tied up for work on the other side of town as well. Just as I settled in at the office and was about to walk into my first meeting, I got the call that I had been expecting. When the school name shows up on my caller ID I know it is always for one of two things; 1) Robbie is in trouble or 2) Robbie is sick. I’m used to these calls and know that it generally means that we will go home and take it easy, do some neb treatments and possibly get in to see the doctor. I asked the school nurse if she thought Robbie could hold off an extra 30 mins so that I could at least squeeze in my first meeting and then I would leave work and skip the second one. My boss even told me to go ahead and leave right then, but I said “No, I’m used to this and we’ll be ok for a few extra minutes.” We quickly went through the meeting and I packed up and headed home to get Robbie. When I got to the school I could tell right away that he wasn’t feeling well at all so we hurried home and started a neb. As he was getting the neb, I conference called in for my 2nd meeting and put it on mute. He came downstairs and I could still tell he wasn’t any better and sent him upstairs for a 2nd neb…which didn’t go over well with him at all. I continued to participate in my conference call until Robbie came downstairs after the 2nd treatment. As he stood at the top of the stairs, before he even made it down to me, I could hear the Darth Vader sound and knew this was VERY bad. As he grabbed at his throat gasping for air, I immediately hung up the phone and called the Pediatrician. They said to bring him in immediately so the second Ashley walked in the door, we quickly rushed to the car with Robbie throwing a fit because of the bad mood he was still in over having to take the 2nd neb treatment.
As we walked into the pediatrician’s office, they immediately rushed us back and skipped all of the usual weigh-ins, etc… Generally, we go in and they take some time getting him hooked up to the pulse ox machine and starting a neb treatment. THIS TIME was different from any other. I watched in fear as the doctor didn’t even speak to me as she literally ran out of the room and back and forth down the hallway trying to get him on oxygen as fast as she could and getting a neb treatment started before even addressing me. Once Robbie was hooked up, not really knowing that anything out of the ordinary was going on, she asked me to join her in hallway. Once we were out of the room, she told me that we needed to get Robbie to the hospital IMMEDIATELY. She asked if I wanted to drive myself or put him in an ambulance. Knowing we would all be freaked out and he would also be connected to oxygen, I opted for the ambulance ride and she eagerly agreed that was the right decision. At that point, I started to tear up and fought the strong urge to cry so that I wouldn’t frighten Robbie or Ashley any more than I knew they would already be. I started frantically calling people, trying to get ahold of Mike (and getting his voicemail) and a good friend who I knew would be willing to take Ashley as long as needed. Mike called back just as the ambulance was arriving and said he would meet us at the hospital. Ashley had held up so well and started to lose it just as I was trying to get out the door with Robbie on the stretcher and into the ambulance. I felt so torn leaving her there scared and in tears or going with Robbie, but I knew I had no choice and my friend would be there any moment to get her and comfort her so with a quick hug and kiss, I apologized and climbed into the ambulance with Robbie.
We ended up being in the ER until about 11:00 PM and during that time Robbie was receiving constant oxygen and nebs with no change to his pulse ox. He was on the highest dosage of oxygen possible, which was what frightened me so much when we weren’t seeing ANY improvements in his condition. They ran tests for RSV, pneumonia, flu and anything else they could think of, and everything came back clear leading us to believe that this was simply a severe asthma attack brought on by the flu he had just gotten over. It was clear that he needed to be admitted to the hospital overnight and with all of the meds and fluids they were trying to get in him, they decided to put in an IV. Putting an IV in a child who completely freaks out over flu and immunization shots is NOT fun. As 3 of us pinned him down, he screamed as loud as he could, “Why are you doing this to me?” and it absolutely broke my heart. They decided that not only did he need to be admitted overnight, but that he needed to go to the Pediatric Intensive Care Unit because of the constant care he needed at that point.
When we were finally moved to Robbie’s room in PICU, I watched as my sweet boy was not only connected to the mask that kept a constant flow of oxygen and nebs going to him, but he also had 3 patches attached to his chest to constantly monitor his vitals and the pulse ox attached to his finger and the IV running constant meds and fluid as well. I looked at my little baby and couldn’t believe that at this point he had been on non-stop breathing treatments, oxygen and meds for almost 12 hours with no improvement at all. His pulse ox was staying consistent in the low 80’s, which is dangerously low since that was even on full oxygen support. There was no telling how bad it was off the oxygen at that point.
We stayed in PICU from Monday through Wednesday before we were moved to the Pediatric floor, where we stayed until Friday afternoon. During the course of the week, my sweet Ashley was shuffled here and there and spent each day not knowing where she would be going after school or where she would be sleeping that night. Mike stayed at home with her 2 nights but I simply couldn’t bring myself to leave the hospital for longer than an hour or so with my little boy laying in a hospital bed. Robbie eventually started getting some life back into him and he would sit in his bed and color or build Lego’s or play board games with us. He enjoyed getting a giant envelope full of cards from his classmates and I made daily calls and emails to the school and his teacher with updates. By Wednesday, we were finally turning a corner and he was going to be moved to the Pediatric Ward. For the first time in 48 hours, he was able to get up and walk around even though he still had to have his oxygen cart with him. However, he hadn’t seen Ashley since Monday and was starting to get really upset about missing our dear puppy Bella. He occasionally just sat and cried because he missed Bella so much. Each day we kept wondering if it would be the last day before we went home, but each time they tried to cut down on the level of oxygen he was receiving, his pulse ox would drop back down to the mid to upper 80’s, which was still too low. Once we moved out of PICU I started asking for visitors to help cheer him up. Ashley was finally able to see him on Thursday and he was also surprised with a visit from his teacher and some family friends. When I picked Ashley up from school that day to bring her to the hospital, I went to Robbie’s class to read a thank you letter he had written to his classmates for all of the cards they had sent to him. As soon as I opened my mouth to read the letter, I choked up and had to tell his teacher that I just couldn’t do it and she would have to read it. It was so overwhelming to stand in a room full of 9 year olds and read a letter from my little boy who had been sitting in a hospital bed all week. Even though I didn’t open my laptop the entire time we were in the hospital, I found comfort and strength in the texts, emails and Facebook messages from friends and family who were praying for Robbie’s recovery.
On Friday morning we woke up still not sure if this would be the day we went home or not. After Robbie had an emotional meltdown the night before about how much he missed Bella, Mike drove out to the hospital for a reunion with a little boy and his beloved puppy. Shortly afterwards, we got the news that Robbie was finally allowed to go home. He stayed on oxygen until about 2 hours before he was discharged and then sent home with a full medical cocktail of 7 prescriptions and 3 breathing aids, as well as instructions that he would need to stay inside for the week. We had 2 follow-ups with the pediatrician that week and finally a full week after being discharged, he received a clean bill of health!
You would think my poor baby boy’s health struggles would have ended there, but not quite. Only a day after being taken off of activity restrictions and looking forward to the coming Spring Break, Robbie was hit with a violent stomach virus. Mike and I watched in fear this past Saturday as Robbie sat in his bed doubled over in severe pain and screaming at the top of his lungs. Unsure if it was the stomach virus we had been told was going around (we had picked him up from school on Thursday when he threw up, but had been fine since) or if it was something more severe like appendicitis. Fortunately, after an extremely rough night on Saturday and taking it easy on Sunday, Robbie woke up on Monday feeling better than he had for the past month! It seems as if we have finally turned a corner and I am hopeful that we will be able to put our families version of March Madness behind us and look forward to a much healthier Spring and Summer. We will be meeting with a Pulmonologist in April and already have a plan in place to help Robbie hopefully get through the summer without any further issues.
My little boy was a real trooper through everything and continues not to complain about the added medications that are now a part of his daily routine. Although I have become a bit obsessed with getting the house as clean as possible (not even a spec of dust is allowed!) and monitoring his activity level to extremes, I know that I am going a bit overboard because of the guilt I feel at wanting to get through that first meeting at work before I left to pick him up from school. After 9 years, I thought I knew what I would be walking into for his treatment that afternoon and am still dealing with extreme guilt at not recognizing the true seriousness of this episode initially. As a mom, it will be hard to shake that feeling and all I can do is learn to recognize some of the more serious symptoms and know that my son loves me no matter what and will always want Mommy hugs and kisses most of all when he is sick.
