The Norwood Surgery and ICU

Mommy's Journal - June 23rd We came into see you at around 7:30am the morning of the surgery. You were screaming because you were hungry and hadn't eaten since midnight the night before. The nurses wrapped you up and you fell asleep. We followed them to the OR waiting room when I broke down crying. Suddenly I felt hands on my shoulders, which I assumed was one of the nurses. Then I saw your Papa Philip and realized that it was Gramma Linda behind me. She asked what was wrong and I just said "I don't want him to go". Seeing all our family made me feel much better though. Your sister was there, she got to see you and give you a kiss before you went in for the surgery. That made me feel good, that she had a chance to see you again. You were sound asleep when they wheeled you into the operating room. The wait for the surgery to be over went extremely fast for me. I think it was a slow day for your daddy though, he seemed to be constantly thinking about it. Our family and having to pump often kept me good and distracted. The surgery went from 9-2:30, then the doctor came out and told us that the surgery went as good as it possibly could. Now it is up to you and how your body reacts to the surgery. The day after surgery was a rocky day. Sometimes we went to see you and you were doing well, and sometimes your monitors didn't look so good. There was a lot of beeping. At one time your heart rate was quite high and I sat there with you until the nurses got it to normal again.

Mommy's Journal - June 23rd, Part 2

Today they stopped giving you the muscle relaxants as it slowly wore off we could see you making sucking movements and grasping our fingers a little. We went in early this evening to see you. I think you heard us coming, because when we got to your bed you were staring right at us. It was so great to see you little eyes again. The nurse didn't even know you had woken up until I told her. It seems like you just opened them up because your heard us. You were grasping our hands really well too. If we tried to take our finger away you would grasp it tighter and if we got it away, you would reach up to find it again. The nurses said you are doing really well and you will possibly be in the step down room in a couple of days. I am so happy to hear that. Your are our little trooper. We love you lots and know you are strong.

Mommy's Journal - June 25th

Yesterday your cardiologist Dr. Kantor came to talk to us because he is going on holidays and won't be back until July 16th/05. He said that you were breaking records. He said that he figured you would be out of the hospital by the time he gets back. So the next time he would see you would be as an out-patient. Mommy and Daddy were very excited about this Early this afternoon you were extubated (Your breathing tube came out). The nurse told us that she thought you would probably be transfered to a step-down room today. They gave you an oxygen mask to help you with your breathing, and said you would probably only have it for 4-6 hours. Unfortunatly you still had it when we said goodnight to you.

Mommy's Journal- June 25th

This morning the mask was replaced by CPAP. You have been having a hard time breathing. Today was not a good day for you. You sleep most of the time but when you are not sleeping you are having a fit. The nurses have been giving you drugs to keep you calm because you get yourself so worked up. It is really hard for your Daddy and I to watch because you really look like you are struggling and your cry is now really raspy. The doctors have talked about putting the breathing tube back in, but I really hope they don't have to do this. When we said goodnight to you tonight you were quite sedated. The nurses said that this way you would hopefully sleep all night and the oxygen would have a chance to help you. I truly hope that the cpap is gone tomorrow and that you are breathing great on your own. I also hope that I will get a chance to hold you, as I believe that is all you really want.

Mommy's Journal- June 27th

The nurses all talk about how cute you are, even though you look really sick right now. You are really pale and you just look so sad and tired. Tonight I really wanted to pick you up and cuddle you close, despite all the wires. Last night your sats # was very low, it went down to the low 60's when it should be at 80 or at least in the 70's. The doctor was doing everything he could think of to help you but not much was working. They called in ENT (Ear, Nose and Throat)Specialists to come and look at you because they think your problem could be in this region since no problem is showing up in you chest x-rays. So all day today we were waiting for ENT. They were all in surgery this morning and as the doctors thought you were struggling too much, you were reintubated. It was hard for us to see this but you seemed calmer and more alert with it in. You looked at Daddy and I and more alert with it in. You held our fingers tightly and once again did not want to let go. I am quite frusterated because ENT never really came to do anything today. They pretty much said they couldn't do anything because you were intubated. I just want them to find out what is wrong with you and fix it. I just feel like they aren't helping you right now. Everytime you fuss they just sedate you, to keep you quiet, but they need to find out what is making you fuss so much. Everynight I go to bed hoping and praying that you will be atleast a little better when I see you in the morning.

Mommy's Journal Monday July 4th.

You were extubated for the second time at around 3pm thursday June 30th, nobody from ENT came to look at you. You seemed to be doing fine before we left for home at around 6pm. I called to check up on you that night before I went to sleep and the nurse said that as long as you were calm you were okay but when you were upset you didn't look very good. By Friday morning you were reintubated again and ENT had still not looked at you. You were extubated again yesterday morning and finally ENT came to look at you. They found that your left vocal cord is paralyzed and because of that your airway is narrowed. The doctors think that the vocal cord will begin moving again on it's own if you are left as often and as long as possible without the ventilator. It has now been about 34 hours since the tube was taken out and you seem to still be doing fine with the oxygen box over your head.

Mommy's Journal- July 5th

Today Daddy and I went to see you this morning and we both got a chance to hold you and cuddle with you. We just had to hold the little oxygen hose near your face to make it easier for you. I went to see you again around six this evening and all the oxygen stuff is gone. You are now breathing on your own with no help. I held you for an hour and you were fine. You are quite congested but that just means you cough and gag a lot. You have been spitting up a bit too, but over all you are doing great. The nurse said the plan is to have you moved to a step- down room tomorrow. Although we have learned here at sick kids things don't always go as planned, but I sure hope they do.