Our life with CF...Eve's sickest year!

So after that "misleading" phonecall to say that Eve had a very mild form of CF, things began to look up! From the age of 6mnts to 3yrs Eve never even had so much as a cough! I think she was on antibiotics once for a slight cold. She was so healthy that I knew the doctors must have been right about the "mild case". But, I soon found out that they were very wrong.

Just before her 3rd bday, Eve developed an infection on her right lung. It didnt go away after 2weeks of antibiotics, so she had to be admitted for IV's. I took it pretty hard because I figured, since she had a mild case, she might never need IV's! So after 2wks in the hospital, all the while trying to study for my Christmas finals in college, we were discharged. But less than 8weeks later she was sick. Again, 2weeks of antibiotics wouldnt work so we were admitted. This time it took 3wks of IV's for her to get better, and this time I was trying to put the finishing touches to my thesis, which appropriately was on CF. Again she got home, was fine for a few weeks but was back in a 3rd time 8weeks later. ALL the infections were in the same place, her right upper lung. The docs knew this but failed to do any investigations as to why this was.

(I should note that at this time, we were in a different clinic than the one we now attend. Their lack of investigation was what made us move to the clinic we are now in and SOOOO happy with!)

Chicago...

It was just after the 3rd admission that we decided to pay a visit to my brother and his family who live in Chicago. Eve was not 100% on leaving Ireland, but her clinic gave us the go ahead and since it was only a 10day trip, we figured she would be ok! How wrong could we be.....

For the first few days of our trip, Eve was great! But towards the end she started becoming very sick. She was deathly pale, wouldnt eat, was constantly tired and had NO energy! Naturally I was extremely worried and was working on getting her seen by a CF doctor at the hospital.

Eve 2 days before admission, tired all the time.

Too weak to pose for a photo with her cousin Trish.

One morning, I woke up and Eve was really struggling to breath! She was in so much pain that she would vomit when she coughed. The night before she hadnt been so bad, but as soon as we woke up I knew she needed a doctor! I took her to the ER of Childrens Memorial Hospital and the second we got there, she was rushed into a room. Her O2 saturation was at 52%! When I saw that number on the screen I nearly fainted. They immediately put in an IV line, gave her several different nebulisers and put her straight on O2. The nurse told me that she would needed to be intubated so she would have to be rushed upstairs to the ICU. I think it was that moment that I collapsed. I couldnt stand up, everything just went black. I started coming round just as the ICU nurse told me that they were about to intubate her, but luckily a doc came in and checked her and said she didnt need intubating after all but she did need to go on bi-pap (a machine to help her breathe as she was too weak to breathe by herself)

The doctor then told me that they would need to put a tube down Eve's neck, whilst awake, and suck out the huge mounds of mucus in her lungs that were stopping her from breathing easily. He warned me that this would be very traumatic for both me and Eve and that she could stop breathing during the procedure and would then need to be intubated. He told me I could leave the room if I wanted, but there was no way I was leaving my baby. She was so scared as it was! The next moment was the most horrific moment of my life...

They put the tube down and Eve turned blue. I honestly thought she was dying at that point. There were about 20 medical staff in the tiny ICU room and my baby was just staring at me as if to say "why are they doing this to me?" But being the brave little soldier that she is, she stuck it out and kept breathing on her own. As soon as they were finished they put her back on bi-pap. Then it was time for the feeding tube. She weighed a mere 26lbs at the age of 3 and a half. Her lungs were burning every calorie that she ate, just to be able to breathe.

Eve after just getting off bi-pap, a week after admission. She still looked incredibly sick.

Asleep: she spent 8days sleeping almost every minute of the day. The doctors said this was her body's way of coping after so much hard work just trying to breathe.

2 weeks after admission, up on the respiratory floor. Looking ALOT better!

The day we got discharged. Appetite was back, there was colour back in her face, and she was 4lbs heavier!!

To cut a long story short, we stayed in the ICU for 10days before we were moved up to the respiratory floor for another 3weeks. Despite all our troubles, we had a great time at the hospital and met some amazing people. Eve's doctor, Dr. Watts, actually cried as we were leaving. Before we left, she told me that I should switch clinics because the clinic we had been attending SHOULD have done some sort of investigation as to why Eve's infections were in the same place all the time.

Eve left Chicago a million times healthier, 2cms taller and 4lbs heavier. I was so thrilled with her progress that I was sure this was going to be a new start for her!

Again, how wrong could I be.....