My (temporary) reality

So much happened in the last few days. The day we went home, we headed back to the hospital that night for her nightly suctioning. The respiratory therapist who called us back to the room was the same one we had the night Grace was admitted. I wasn't so sure about her that first night and I really wasn't sure of her this time around. Looking back it must have been that mother's instinct, but I didn't listen at the time. She seemed very stressed and impatient. I laid Grace on the table for her to check her respirations, oxygen, etc. The therapist was bugged because she kept getting pages from another floor and stopped every other minute to look at her pager then look a me with a look of she had other things to be doing. When we were released from the hospital, the nurses told me that her nares (the tissues inside her nostrils) were swollen and tender from all of the suctioning they did in the hospital and that we needed to make sure she was only suctioned in the morning and at night and to avoid any other suctioning unless she was showing the signs that we talked about in the hospital that she was having a hard time breathing. I made sure to mention the swelling to this therapist so that she would be careful with Gracie.

The time came to insert the tube and I was shocked at how rough she was being. She suctioned both nostrils and then had me pick her up and calm her down to see if there was any improvement. Now usually- the baby calms down, vitals go back to normal and the therapists tell you "We'll see you in the morning!" (I had not yet experienced this first hand, I just had heard the other parents and therapists in the bed next to ours being told this. So I was hoping we would be told the same thing.) Instead in an exasperated voice the therapist said "I don't like the way she sounds, lay her back down. I am going to have to do it again." I didn't want to lay her down but again, I didn't listen to my instincts. She suctioned her again and just as rough as the time before. And then she had me pick her up. This process happened two more times so in the space of about an hour she was suctioned 4 times rather than just the once and on top of it she was too rough. The therapist then said "I am giving her a treatment, sit down and hold her." So I sat there trying not to burst into tears (again!) while holding the little mask up to Grace's mouth praying it would all be over and we could just go home. The therapist said she didn't like that Grace's pulse was still so high and went and grabbed a nurse from the pediatric department to come. They had me sit in a chair next to the bed and turned the lights down and had me rock her to see if that would calm her. They also had oxygen on her because she couldn't keep her oxygen levels up.

The therapist left to take care of things on the other floor and the nurse kept coming in to see if there was any improvement. The other therapist came by and apologized for the way that our therapist was treating Gracie. When ours came back, the nice therapist tried to help us out but that just ticked our therapist off. The nurse called our family doctor and she said that if we couldn't get an oxygen tank brought in (by this time it is 9:50 on a Friday night) Grace would have to be readmitted to the hospital for the night. I called Josh while they were on the phone with the doctor to tell him the news and I couldn't get through a sentence without crying. I couldn't believe what had been happening. After I got off the phone, I prayed for a miracle. I pleaded that we wouldn't have to spend another night in the hospital.

The nurse came back in a few minutes later and said that an oxygen order was filled out before we were released from the hospital just in case and that she was calling home health care to see if there was any way we could get the oxygen delivered to us. I kept my fingers crossed and a few minutes later she came in and said that there actually happeded to be one guy out making a delivery and could have oxygen to us in a half an hour. He brought us a portable tank and said to call him when I got home and he would bring out the big tank that stays at the house.

I took Gracie home. My parents came a few minutes later and I burst into tears. It was so horrible to watch the therapist be so hard on my baby. It scared me to think we could end up back in the hospital, and the weight of all of it had me emotionally drained. Josh and my Dad gave Gracie and I both beautiful blessings and a feeling of comfort came over me. Since that night, we have had our good moments and our bad. I know that ultimately she will get better. That I won't have to make 2 trips a day to the hospital forever. That I won't always have to carry a baby around who is tethered to an oxygen tank 24 hours a day. And while I know she won't be better right this minute, we are lucky and blessed she hasn't been worse.

In most waiting rooms, people sit as far away from each other as possible, avoid eye contact, and never say a word to each other. This is not the case for the Broncholitis Clinic. We all know each other, we all know each other's stories. We are all genuinely rooting for each other. I don't think that anyone could fully grasp how horrible this sickness is unless you have been through it. And there is such support when you know you have others that you can talk to who will know exactly what you are going through. It is the most helpless feeling in the world. To see your child so sick and there is nothing you can do about it. To know that it is out of your hands and you just have to have the faith that everything will work out.

I used to look ahead wondering what day Gracie will get better but I have learned it is better to just take it one day at a time...and hope that tomorrow just might be the day.