PICU

Saturday, May 9, 2008
So if you have not heard the news, I just wanted to let everyone know that they admitted Kennedy to the Pediatric Intensive Care Unit (PICU) @ Loma Linda Children's Hospital. The reason for this visit to the ER and then subsequent admission was caused by severe congestion/cough and difficulty breathing. Starting Sunday and subsiding on Tuesday Kennedy was running a fever - nothing to significant, temperature was usually sustaining @ 101.9 degrees. Tuesday afternoon Kennedy's fever broke, however, she began to get very congested and developed a horrible cough. She had a lot of mucus and every time she would get a good cough in, she would loosen up the flem and then begin to choke because she was unable to swallow it on her own. This lasted for a couple of days, however, Thursday and Friday were a little different. Kennedy was very irritable (which is not like her) and was unable to relax. She was experiencing these horrible cough attacks, was very lethargic, and her breathing was extremely labored.

On Saturday morning @ 2:00 a.m. I just felt very uneasy with Kennedy's current state. I packed up her stuff and headed out to our second home (I can't believe that those two words are even in my vocabulary and I use them in conjunction with one another). We had to wait in the waiting room for over 2 hours - go figure. During my wait I ran into one of my friends Amber. It was great to have someone to chit chat with in order to pass the time. Lucky she was there, otherwise the admissions people @ the front desk would have hatted me - I get so damn inpatient when I am forced to wait while Kennedy is having difficulty breathing and only sating in the high 80's low 90's (thanks Amber).

Almost two hours later it was finally our turn. They brought us back and performed a chest and abdominal x-ray. Kennedy was stable at first but was just beginning to pucker out. She was just having a hell of a time breathing on her own. Our night nurse but her on nasal cannula which seemed to help for the time being. The x-rays came back and we were informed that Kennedy's right lung was completely whited out or cloudy. We were told that Kennedy has severe Pneumonia in her right lung. The doctor ordered for an IV to be started and for a full round of labs to be drawn. As time ticked on, Kennedy's condition began to worsen. She was having more and more difficulty breathing. It was shift change and the day time attendee rounded to our room and seemed very concerned for Kennedy as well. She ordered several breathing treatments to be performed on Kennedy (which didn't work) and suggested we start her on CPAP (which is a kind of ventilation machine) which forces air in the nose and thus helps open up the airway and provides Kennedy with some additional support.

The next couple hours were a blur - probably due to sleep exhaustion I presume. Moreover, one thing I do remember is that doctor after doctor kept coming in talking about possible intubation - WHAT THE F*CK! Why in the world is that word even being mentioned in my presence? They must have not received the memo about how much I hate that damn machine. To me Kennedy seemed to have distressed breathing, but she was far away from possible intubation. It was then decided that Kennedy would be admitted to the PICU as opposed to a step down unit (less critical unit) for further support and observation.

Once we got Kennedy settled and met our nurse and all the doctors, Brian and I went to grab a bite to eat - the only thing that keeps us sane sometimes (hence, our growing waistlines - haha). After dinner I went home to rest, I was completely exhausted after being up for more then 35 hours straight. My current updates via text message from Brian are that; Kennedy has a protein in her urine, her white blood count is extremely high, her right lung has severe pneumonia, she is being given antibiotics via IV, her CPAP settings are @ 40% oxygen and she is sating in the mid 90's, she is being given fluids via IV because her stomach is very distended and filled with air, and finally they ordered an ultrasound to be performed first thing in the morning to see if there is fluid between her lungs and ribs - this will help the doctors determine if they need to suction her or intubate.

I love the fact that Brian is at the hospital with Kennedy and letting me get some well needed rest at home so I can be by her bedside tomorrow and all subsequent days. However, I have developed a very weird personality trait every since I had Kennedy and was thrusted into this new life. I can't stand to be away from her when she is in the hospital. I like to know everything that is going on (that is the control freak inside of me coming out), why they are doing what they are doing (more control freak), what they are doing to improve things, what there feelings are, but most importantly I like to watch and monitor everyone and everything the doctors order and things the nurses do in order to catch mistakes, which by the way I have caught numerous - yes, you heard me, numerous. For example, this morning I caught the nurse entering the IV dose incorrectly on Kennedy's infusion pump. She was going to pump into Kennedy more then 90 mls over what the doctors prescribed, which once I got home and did a little research this could have caused brain damage if to much sodium was given to Kennedy to fast - GREAT. I don't even want to think how many times this has happened in the past, but now that I am onto their game it won't happen again on my watch.

As I sit here and type this e-mail, I can't help but feel so cheated and sorry for myself. I sit on our bed and wallow away in my tears. There are some days (today would be one of them) that I just wish I would wake up one day and this this horrible nightmare would be behind us. It is just so hard sometimes to accept the fact that these situations and predicaments we face daily "are my life". I just WISH that one day I would wake up and everything would be "normal". The word that I have to hate. What I wouldn't give to just one day wake up and hear Kennedy's voice echo down the hall. I would love to get to experience the things that all other parents get to....I imagine what it would be like to hear her babbling in her room, "MA MA MA MA" and I would walk in and she would be playing in her crib and when I walk in she would turn and have this look of pure excitement and enjoyment on her face - unfortunately I only can live these dreams through others, I only can imagine what the enjoyment would feel like through other peoples experiences. Instead day after day is hit and miss for my family. We deal with sorrow continuously and it always feels like every where you look you are reminded just how sick and far away from "normal" Kennedy really is. The things people take for granted or get frustrated about - I just wish I could have a slice of that just for one day. I just wish "this story" was not my life.

So I will celebrate my first Mother's Day in the hospital with my daughter - just as I spent several other holiday's and/or celebrations. I will keep everyone posted - Please pray that these antibiotics do there job and that Kennedy fights through this.

We love you all,
The Bonomo's