I am Back!!!

Friday, July 30, 2010

After taking a nearly 5 month blogging sabbatical - I am back!!!! There have been numerous reasons for my break (I will get to those in subsequent posts)! Kennedy is doing great! She is growing and has managed to stay sick free! We reached a huge milestone since I last posted....On June 3rd 2010 we celebrated one year hospital free! I can still remember the night we were discharged. Due to the persistence and little bit of convincing by Laura (Kennedy's Primary PICU nurse) and I we were able to get Kennedy discharged only 72 hours after extubation. Almost every doctor in that hospital expected us to be back within the month and others assumed we were taking our baby home to die. But true as form - Kennedy had other plans. So I would like to say again - Congratulations Kennedy you are nothing short of a miracle.

Now on to the topic I am sure you are all waiting for.....We were consulting with several doctors down @ UCSD Rady Children's Hospital back in April. We were referred to an amazing doctor - leading a world renowned Mitochondrial and Metabolic Research Center. After our initial consultation we were certain that this was going to be it. We were finally going to be given the answers we so rightfully deserved. It was two days before our appointment and I received one of the most upsetting phone calls - the hospital had lost all of Kennedy's blood and had mishandled her urine! To make matters worse the lady proceeded to ask how soon we could get Kennedy back down to USCD to redraw the labs. Lets recap here.....the amount of blood that was required in order to run all of these tests was bordering the maximum amount of blood they typically withdrawal from someone Kennedy's age. For about a month after the blood was drawn Kennedy was paying the price. She was not herself and you could tell something was wrong. She was very irritable and having a lot of breathing issues (her Pediatrician figured they probably overdid it and these were the repercussions we had to face). Lucky for us it took about a month for Kennedy's body to recoup and bounce back. In addition, the urine that was some how mishandled took me over two weeks to collect. Lets just say trying to have a two year old with no muscle tone pee in a bag is no easy feat.

We have had several (more then I care to admit) vials of blood go missing, but why did it have to be these vials??? I was absolutely devastated that this had happened to us. I am normally very good at staying grounded and not putting all my eggs in one basket but this kind of broke me. I kind of wrapped my future plans into finding out the results of these lab tests. So as it stands today Kennedy is still diagnosed with Leigh's Syndrome with Encephalomyopathy based off her MRI results, but nothing has been confirmed via DNA. We will not be re-performing the lab tests. We have accepted that we were not meant to find out.

There were so many reasons I wanted answers, but the biggest one of them all was because I really would love to have another baby. These tests results would have allowed us to know exactly what the odds were of this happening again. My husband has made it abundantly clear that under no circumstance does he want to potentially have another baby like Kennedy and I do not blame him for feeling that way. I actually agree with my husband. It would be completely irresponsible and selfish of us to bring another life into this world knowing the odds that he/she could be afflicted with Leigh's Syndrome. As it stands right now we have a 1 in 4 chance of having another baby with Leigh's Syndrome. Those are extremely high odds and if it were to happen that we got pregnant and had another baby like Kennedy it would not be fair to us, Kennedy, or the new baby. I could never knowingly bring a baby into this world and have them be afflicted with this disease Kennedy has - never! Having a child like Kennedy is probably one of the most challenging things I will ever have to deal with in my entire life. It affects you mentally, spiritually, emotionally and physically.

At times you feel ostracized. Like you exist in this world all by yourself. The last 6 months have been extremely hard for me. Kennedy has digressed - she has a lot of issues managing her secretions. I have to suction her all the time and the night times are particularly a disaster. She is up every couple of hours and has increased seizure activity during the times she transitions from being awake to being asleep or vice versa. At times I surprise myself at how well I am able to adapt on such little sleep. I guess you do what you have to do - and I would do anything for my baby!