I never wanted to be one of those parents who was afraid to take my baby out in public for fear that he would get sick. In the first few months after Joey was born we carefully avoided people we knew to be sick. But we did not avoid exposing Joey to the public in general.
But maybe we should have. On March 27, 2009, at approximately 8 weeks old, Joey was admitted to the hospital with bronchialitis. That day had started out pretty normal at first. I got Joey dressed and took him to the postpartum body sculpt class I was attending. In the car on the way there he started coughing. Not a lot, just a couple times. I quickly called my mom and told her that he sounded a little congested and had coughed a few times. She said not to worry that babies often get a little congested. During the class he seemed to be breathing hard, or with exaggerated breaths. I was getting a little concerned, but did not want to be one of those moms who called the doctor for every little sniffle.
After class we went by JC Penny to pick up some pictures. I was also going to stop by my office and drop off the thank you notes I had written for the beautiful baby shower they had thrown me and for all of the very generous gifts. (Since Joey was born 5 weeks early the shower was held after) While we were driving there, however, I decided that I definitely did not like the way Joey looked. He was now pale, his skin was mottled (even more than he normally was), he was very sleepy and his chest was caving a little bit when he breathed. He did not have a fever, no runny nose and was still eating like a champ... there were no other signs he was sick. Still I did not like the way he looked so I called the doctor around 2:00 and they had us come in that afternoon.
When we got to the pediatrician's office they checked Joey's oxygen level, it was really low, so they gave him a breathing treatment, put him on oxygen and called over to the hospital to see if there was a bed available in the Pediatric ICU. I started bawling when they told us he would have to be admitted to the hospital and don't think I stopped for a few days. We were immediately taken over to the Pediatric Intensive Care Unit (PICU), me in a wheelchair with Joey in my lap and told that Joey had Bronchiolitis. I had never heard of this. But I was glad we were there getting him some help. Still, I had no idea how very seriously ill he was becoming. And I had no idea at the time that this was about to be one of the worst experiences in my life (even worse than Joey being in the NICU).
It was about 6 p.m. on Friday night when we were admitted to the hospital. When the doctor admitted us he indicated that Joey's chest x-ray "looked terrible" and there was a good chance Joey would get worse before he got better. For the time being, however, they were going to get an I.V. going, give him oxygen and just do breathing treatments as needed. The I.V. had to be one of the most traumatic things for us. Being that this was a PICU you would think they would be equipped to handle little ones. Wrong. After several tries to get an I.V. in each of Joey's arms and feet, they had to call in someone from the NICU to try. The NICU nurse eventually got it going but by Saturday evening the vein collapsed and they had to do it again. I got hysterical and they made me leave the room (several times). The doctor also decided on Saturday evening that eating was requiring too much energy and they wanted Joey to reserve his energy for breathing. That backfired. The second a feeding time rolled around, and passed, and I was not allowed to feed Joey, he got extremely upset (and started crying) which did not help his breathing. So by early Sunday morning (2 a.m.) they decided that he needed to be intubated.
I again became hysterical. Tony, who had a pretty bad cold (and was likely the one who gave it to Joey) had gone home to sleep. I stayed at the hospital by myself (still pumping every four to six hours). Once again bad things (and news) was always happening while I was alone with the baby in the hospital, with no support.
They moved Joey to his own room so he could be intubated. I gathered our things from the old room and when I came around the corner, to my horror, they were shaving a portion of his head (and had a big rubber band around his head) to try and find a place for another IV. I went ballistic when I saw this and was again escorted away from the room. They were unable to get an IV in so they opted to put in a central line in Joey's groin.
They made me leave the room while Joey was intubated and the central line was put in. This was absolutely horrible. I refused to go to the waiting room around the corner so they got me a chair in the hall outside his room. The entire time I could hear the doctor bantering with the nurses. It would be almost ten days before I could look this particular doctor in the eye without wanting to inflict harm on him. I could not believe the lighthearted banter I was hearing from in the room where they were intubating my baby and putting in a central line. It was around 4 or 5 on the morning on Sunday morning by the time they finished. Joey had been given morphine and Atavan and so he was in a comma like state. He would remain that way for the entire week that he was intubated.
It is still hard for me to look at these pictures without getting choked up. The entire week is somewhat of a blur. I do not remember sleeping much, only floating in and out of sleep on the fold out bed in the corner of the room between visits by the respitory therapist and nurses. And pumping. I actually enjoyed pumping at this time because it was the one thing I felt I could do to help my baby. All night long Joey would also suffer desaturations in oxygen (due to spasms in his lungs or mucus) and alarms would go off and people would come running into the room to bag him while I helplessly looked on. I think the worst thing in the world was watching them have to bag my baby.
After seven days on the ventilator, he was finally maintaining oxygen levels during the weaning from the machine and they were finally able to extubate him. As in the NICU, the equipment and IV bags all slowly started to disappear.
Joey's Grandma (my mom) was again a lifesaver. After Joey came off the ventilator he was taken off the morphine and began to experience withdrawal. It was terrible and I felt so bad for him. He was awake for almost 48 hours and seemed miserable. This baby hardly ever cries and he cried whenever you set him down. And holding him was not an easy task as he had a CPAP (high flow oxygen line), still had the central line with several I.V.'s in it and an NG tube for feeding. The only thing made him happy at this time was being held and bouncing him. And so his grandma bounced him all night long for almost three nights. I was so grateful to be able to sleep at home, in my own bed, with my husband for the first time in almost two weeks.
Twelve days in the hospital at this point. Do we look exhausted here or what!
By two weeks, Joey was finally off the ventilator, off the NG feedings and bottle feeding like a champ. It was the Thursday before Easter and the only assistance he was receiving at this time was, what the doctor described as a whiff, of oxygen. I once again began begging to take my baby home. At first they told me maybe on Monday. But I was not ok with my baby spending his first Easter in the hospital if the only reason we were still there was for a very small amount of oxygen. So they agreed to get us set up with oxygen and a pulse oxygen machine at home and that Saturday, after fifteen days in the hospital, we took Joey home.
He has since had bronchiolitis again. This last time, however, his airways were larger and we were able to treat him by doing breathing treatments with the nebulizer at home. He does not like the breathing treatments but it beats the heck out of being in the hospital.