Just Shy of ONE Month

Sunday, November 16, 2008
We were four days shy of being home for one month when we were readmitted to Loma Lindas Acute Pediatric Hospital. That's right - we are back in the hospital. Last weekend Kennedy was having some trouble breathing and was very congested. We were very concerned seeing as Kennedy has Respiratory Distress Syndrome (RDS). Friday and Saturday she was congested but overall seemed fine. However, Sunday was another story. Kennedy was having alot of trouble berating. She was gasping for air numerous times. Her skin became very mottled and she looked a little pale. Plus, when you placed your hand on the back of her chest you could feel rattling in her lungs. So Brian and I decided to rush her to the emergency room at Loma Linda.

It took us about 25 minutes to get there and we had a bed within ten minutes. The second I started telling the admit team Kennedy's history they rushed us back. An X-ray was performed and it was determined that Kennedy was developing Pneumonia. When I heard those words I freaked out!! If you remember, while in the hospital I was always told that it was pneumonia that would kill Kennedy. I was really beginning to panic. The nurse drew some labs consisting of a complete blood count (CBC) and a metabolic panel. The good news was that Kennedy's liver levels were almost normal, her billirubin levels were normal, and her hematocrit and retic count were perfect (which means her anemia is going away). However, her white blood count was elevated. After drawing the labs the nurse tried to place an IV but was unsuccessful - big surprise. The nurse called down for an IV Therapist to place an IV in Kennedy because the doctor wanted to start her on antibiotics to treat her pneumonia. I explained to her that Kennedy is not an easy stick and that her blood clots before the IV can be placed. After 5 different attempts I told the IV therapist to stop. I was not going to let her poke her time and time again and ruin all of her veins. I spoke with the doctor and she said that we could hold off on the IV and put her on oral antibiotics for the time being.

We were not admitted to the hospital until 6:00 am the next day - boy were we tired. Brian and I had no idea that we would be staying at the hospital. We were not admitted to the NICU, but instead to the Acute Pediatric Unit. The ONLY nice thing about being in this unit as apposed to the NICU is that you can spend the night!! Everything else is horrible. The nursing care is pathetic. I sometimes wonder if these people even have their RN licenses and if they really do how in the hell did they obtain them. Tuesday morning I woke up to the Nurse saying that we needed to get an IV started in Kennedy because the doctor wanted to have the antibiotics run via IV. I told her that she would have to call the NICU and get someone from down their to come up and start her IV. She tried to argue with me and tell me how they had really good IV
Therapists, however, I told her how the really good IV Therapists could not get a line in Kennedy on Sunday and how she blistered Kennedy's forehead. I think they were really irritated with me because they had to call down to the NICU, but oh well. At this point I could care less how mad they were at me. I am sick of my baby hurting and getting poked all the time. Later that afternoon a couple of girls we knew from the NICU came up and stared Kennedy's IV in two tries!!!!

I had a meeting with the Nurse Manager to discuss the dismal care the nurses were providing. I explained Kennedy's situation and told her how unsatisfied I was. She stated; "oh you are a NICU mom". That is right!!!! However, as I told her, being a NICU mom has nothing to do with the job her nurses were doing. Kennedy's pulse ox had come off and was alarming. I didn't silence the alarm or re stick it to Kennedy's foot because I wanted to see how long it would take someone to see what was going on. It took over 12 minutes - thank god the pulse ox wasn't beeping because she was d-sating otherwise she might have been blue by the time they came in to see what was going on. They were doing things that anyone would be very concerned with like; not washing their hands, reusing syringes, not cleaning out Kennedy's kangaroo bag (feeding bag), having no idea how to place the leads. She apologized and told me that she would get me some better nurses. We have had a couple of good nurses, but most of them have been horrible. It has forced us to stay by Kennedy's bedside almost 24/7, which is very draining. I am afraid to leave because if something was to happen to Kennedy I don't think they would have a clue at what to do.

I pushed the doctors to get some tests done to see if Kennedy had reflux and to see why Kennedy looks like she is drowning every time she drinks via bottle. We had an upper GI done on Tuesday. Poor Kennedy had to be strapped into a device that looked like a rotisserie. They made her drink barium via bottle and then they spun her around to see what the food did in her belly and to see if any reflux developed. That test showed no acid reflux. However, this test is a very poor test to determine acid reflux because it only has a window of five minutes. Of course nothing happens in five minutes. So the following day she had another test - PH Probe test. They place a probe down her nose into her esophagus and measures the amount of acid over a 24 hour period. The test showed that Kennedy had severe acid reflux and she was prescribed two medications and I was told to feed her at least at a 30 degree angle.

We also had a modified barium swallow study done to see what happens when Kennedy goes to swallow her milk. The results were not good actually it was the worst result we could get!!! Kennedy is aspirating every time she drinks. The milk she sucks from the bottle sits and pools at the back of her throat and she is unable to get it down her esophagus - her muscles are just not strong enough. So the milk pools at the back of the throat and some of it penetrates into her lungs. This is not good!!! She is making her self aspirate. In other words, the pneumonia she had was actually self induced. So were were told that were were no longer to feed Kennedy via mouth. My instincts were right. I knew this was happening with Kennedy that is why I stopped feeding her via bottle. It was just really nice to have the Speech-Language Pathologist reaffirm my suspicions.

Due to the findings of all three tests, Kennedy's GI doctor decided that we needed to get a g-tube placed for Kennedy. I knew it was coming, but I am sad that Kennedy will have to get it. I mean it is a foreign object sticking out of her stomach. However, the positives are that Kennedy will no longer have to endure the painful time of feeding. She hated drinking via bottle, it really stressed her out. Plus, we can not let her to continue to aspirate on her milk and develop pneumonia. If she get pneumonia numerous time it could be deadly for Kennedy. Kennedy's surgery is going to be either Monday or Tuesday. So hopefully we will be out of the hospital before the weekend.

Please keep her in your thoughts and prayers over the next couple of days.

I will post again once Kennedy is home!!!