Tommy's Ordeal and Breaking Down Walls Pt. 2

Tommy went in on a Friday morning and Leo stayed with us that first weekend. My parents stayed with the other two. If you have never been to Children's Memorial, each floor is designated certain diseases or body systems. We were on the respiratory floor that was pretty high up there. Even riding the elevator would make me cry. A family with a young child would get on and press the 4th floor and it would make me tear up because that was the cancer floor. It just seemed too much to be in a hospital where it was filled with sick kids. Tommy kept pulling his IV out of his arm so they put it in his leg. I woke up Sunday in the middle of the night to Tommy covered in blood. I frantically tried to see where it was coming from while Leo got a nurse. It was his IV again. He kicked it loose again. It was decided the next morning that Tommy would need a PICC-line (peripherally inserted central catheter or in regular language: an IV that is surgically put in because it is going to be in for awhile). Leo went to work and I stayed with Tommy waiting for his surgery. They took him and I waited alone. It took longer than they had anticipated and when they brought him back, they told me it was because he woke up in the middle of it so they had to give him more anesthesia. HE WOKE UP!! IN THE MIDDLE OF IT!! I couldn't imagine this little 3 month old baby waking up during a painful procedure. He must have been so scared. Seeing him on the bed so listless, something in me snapped. Leo arrived and I asked him for the keys to his car. I've already said how terrified I was of driving in the city and at that moment, I didn't care what or how I was going to drive out of there but I needed to get out of there. I could not spend one more minute looking at my baby afraid he was dying. Leo saw how desperate to get out of there I was and told me he'd stay with Tommy but I needed to find a ride home. I called my now brother-in-law who lived in the city at the time and asked him to bring me home. I will never forget how he dropped everything and did that for me. I bet he doesn't know how much he saved me that night. I missed my other two kids so much that it was good to be with them but the next morning, my mother-in-law's husband brought me back. Again, I was so grateful for the people that rallied around us.

I went back to the hospital and went back to the grind of watching him do nebulizer treatments and chest therapy and meeting with all the doctors and trying to get a 3 month old to eat applesauce to take enzymes. One of the doctors mentioned how some families opted to go home with the IV and finish out the meds at home. He had to be on them for 14 days. I didn't know what was worse...being stuck at Children's for two weeks or bringing home a sick baby and have to administer IV meds, nebulizers and chest therapy on top of Nico's medical issues and another 3 month old. The doctor made the decision for me. He said Tommy should stay in the hospital. I admit...I was terrified of having to do the IV.

At the end of the first week that we were at the hospital, the most terrifying thing that I have ever seen happened. I was a big fan of ER at the time so I thought I was used to seeing people bleeding or coding and that sort of thing. Well, I will tell you I was hugely naive to think those things, in real life, wouldn't affect me. The little boy in the room next to us, coded. Our rooms were connected by a big glass door so there was a mad rush of people going in and out and we had front row seats to see what they were doing. The little boy was four years old (Nico was almost 4) and wasn't breathing. The mother was outside screaming. I started crying for what she must have been going through and every fear I had up to that point was right in front of me. I remember calling my sister whose daughter was 4 at the time and I think she cried right along with me. A nurse came in and thought she was offering words of comfort by saying, "Don't worry. He has asthma. Kids with CF don't just stop breathing. They don't die like that." I can tell you that those words offered no comfort. The little boy was ventilated and moved to the intensive care unit. No one would tell me how he was or if he lived which made me think that he didn't. How awful for those parents to sit and watch their young child suffer like that. I could feel the depression of what was ahead for us settle in.


Sidebar: Thank you to my neighbor, T.J., for surprising me with delicious strawberries (and I did get the Elmos for Gia, thank you)! I enjoyed them with chocolate after enduring a day where I was reminded again why I don't like playdates during the week and sleepovers on the weekends. I owe you one! K.E., thanks for the wine!