From Bad to Worse

Thursday, May 14, 2009
First and foremost I would like to start of this post by showing my deepest gratitude and thanks to all my family and friends - you have been the glue that has held me together. Now to more important things....Kennedy.

She is not doing so good. Yesterday was the roughest day Kennedy has had in her entire life. She was on the conventional vent and her settings where maxed out. She was at a really high pressure setting (meaning how hard the air blows into her lungs) and her FIO2 was maxed out @ 100%. This meant that if Kennedy went into distress there was no more assistance the vent could provide her. Kennedy kept her day nurse on her toes her entire shift. She did really well all day Wednesday and throughout the night, however, Thursday was a different story. Early on in the morning Kennedy was looking extremely pale, she was d-sating and her hemoglobin was very low at 6. Just so you have a comparison, the last day of February Kennedy had her Mickey Button placed and I inquired about her hemoglobin - at that point it was a 14, which is on the high normal side. Kennedy received her 5th blood transfusion Thursday morning. It seemed to work - Kennedy's color slowly came back by that afternoon.

The doctors where thinking (hoping) that Kennedy's d-sats had something to do with the fact that her hemoglobin was so low. We were all hoping and praying that after her transfusion she would begin to have an easier time breathing. However, more bad news. A chest x-ray was ordered and it was discovered that Kennedy's right lung was collapsed. Your lung is composed of three lobes and the top two were collapsed. This could also have explained the reason why she was having troubles breathing. The doctors kept Kennedy on her left had side hoping that the antibiotics, breathing treatments, chest PT, and gravity would help her lung open back up. However, this could not have been further from the truth. A couple hours later a chest x-ray was ordered and now Kennedy's left lung was starting to white out.

She was having a hell of a time breathing. The nurse and Respiratory Therapist had to bag Kennedy over a dozen times yesterday. She was d-sating down into the 40's. The vent just was not working for her - she was slipping further and further away. Every time someone would bag her, her 02 would jump back to 100%, however, as soon as they hooked her back up to the vent she would d-sat within a couple minutes. My theory as to why she did so well when they were bagging her was probably due to the amount of pressure they were able to push into her lungs every time they squeezed the bag, however, the pressure they were distributing was not good over a prolonged period of time because it could stretch out her lungs, cause lung damage, or potentially burst her lung.

The decision was made at 7 pm to place Kennedy on a high frequency vent. The difference with this vent as opposed to a conventional vent is that this machine blows hundreds of tiny little puffs of air into Kennedy's lungs, thus, keeping her lungs fully expanded. How she is able to exhale and release the carbon dioxide is beyond me. The hopes of this vent is that it would allow Kennedy's lungs to re-open. This is the last straw for Kennedy in the terms of ventilation. The doctor spoke to us and told us that it might not be a good outcome for Kennedy.

Kennedy needed to be completely paralyzed in order to be placed on this machine. It is very uncomfortable to have your lungs completely expanded and we didn't want her fighting the vent. In addition, Kennedy was placed on a morphine drip to alleviate any pain. A catheter was placed and she was hooked up to fluids since they didn't want her to eat because they were not sure how she would tolerate everything. Seeing Kennedy in this state was so depressing. She is becoming very swollen and looks so lifeless. The only movement was the shaking and the vibrating the machine did. This is no way for someone to live. By early this morning Kennedy's blood gases were beginning to look very promising. We were able to wean her to very low settings on this vent. Kennedy received another blood transfusion this afternoon - her 6th and her color is looking alot better.

Our hopes are to wean Kennedy off this vent by tomorrow morning and hope that it did the trick. If we have to put her back on it, Brian and I will be forced to make some tough decisions when the weekend commences. This is no way for someone to live. She just lays in bed lifeless. She is not able to move, feel, or control any of her bodily functions on her own. Seeing her in this state just kills me. No parent should ever have to experience this kind of pain and heartache. I just pray with all my heart that Kennedy will be able to pull through this with no additional insult to her fragile brain.

Thanks for your continued prayers - just remember you all have a part in Kennedy's recovery.