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!!!

Is it to much to ask for answers???

Friday, November 7, 2008
Why does it seem that all of Kennedy's doctors are completely retarded? I am so sick and tired of not knowing what is wrong with my baby. Come on already.....Kennedy is over 12 weeks old and we are still no closer to a diagnosis then we were the day she was born. Every day that passes shows me more and more that there is something wrong with Kennedy - but what??

This week we had our appointment for our swallowing study, however, it was nothing like we thought it would be. We thought we were taking Kennedy in for a barium study, however, we just had a speech pathologist listen to her throat and chest with the stethoscope while I gave Kennedy her bottle. She said that it did not sound like Kennedy was aspirating, however, wanted us to get a barium study. She is not sure what is going on - what a surprise!!

Next week we have an appointment with Nephrology and Kennedy gets her second RSV shot. I also am going to take her back into her pediatrician because she keeps throwing up after her 8:00 am and 8:00 pm feeding. I think that one of her mediccations is messing with her stomach, but I am not sure which one. It could be either her multivitamin, iron, or phenobarbital - who knows.

Also, the genetic doctor at Loma Linda is driving me cuckoo!! I have called 5 times and left three messages to see what the results of Kennedy's Mitochondrial tests were. Do you think I have heard back from them - nope!! I was told that the test results would take two to three weeks. It has been over four weeks now and we have still heard nothing. I just want to know if it was positive or negative. If it is positive I want to try to get Kennedy some sort of treatment ASAP to prevent the disease from progressing and if it is negative I want to keep searching for answers.

Anyways, enough with my complaining!!! I am just frustrated that is seems like nothing is being done for Kennedy. It seems like all these other people have answers and are able to work towards improvement for their babies and we are just stuck - why????

Oh the Doctors.....

Monday, November 3, 2008

I never realized how tiring all these doctors appointments could be. Since Kennedy got out of the hospital two weeks ago we have seen alot of doctors and nurses. She has been to her pediatrician twice (once for her first follow up appointment following her release from the NICU and the other time for oral thrush). We have had a nurse come and visit the house three times. Her Occupational Therapist has come twice, however, Kennedy decided to sleep through once of her appointments. Kennedy and I also had to go to the Audiologist for her hearing. We also visited the GI doctor today and that's not the last of it. In the next two weeks we have a Nephrology appointment, Neurology appointment, Ear Nose and Throat appointment, and we have to get Kennedy synagis shot (this is for RSV).

When we left the NICU we knew we had to follow-up with a Audiologist regarding Kennedy's hearing. The Audiologist appointment was very informative, however, until we see the Neurologist we still have a lot of unanswered questions. According to her last hearing test administered in the NICU it showed Kennedy had partial hearing lose in her right ear. In order to test Kennedy's hearing I was instructed to keep her up as long as possible because I had to bring her in tired and sleepy. The test could only be administered if she was sleeping. As most of you know Kennedy sleeps a lot. Our appointment was at 10:30 am. I woke her up at 7:30 administered her meds and then fed her a half our later. Once her belly rested I knew I could keep her up if I gave her a bath. So after the bath I put her under her jungle gym. I managed to keep her up until 9:15, although I worried that it was not enough. The appointment went well. Kennedy slept almost the entire time. The test showed that she has partial hearing lose in both of her ears. However, we need to consult with the Neurologist and ensure that her brain is processing the information she is hearing. If everything is fine "upstairs" then we will be able to get Kennedy fitted for two hearing aids and everything will be fine. But if everything is not wired correctly in her brain I don't know what we can do. Hopefully she will be able to pick up on sign language. I guess only time will tell.....

Today, we had our follow up appointment with Peds GI. As we walked in we saw our friends from the NICU The Clayton's. Their daughter Kennedy was released from the NICU two weeks before Kennedy was released. It was very nice to see a familiar face and have someone to chat with about life after leaving the NICU. I think once you have a baby in the NICU there are only very few people that truly understand and can relate to you. It seems that their daughter is really doing well. She is really thriving at home - which is so great.

It was really good that our GI appointment was when it was because I have become very concerned with Kennedy and her eating. She has really really digressed with her nippling since we came home from the hospital. Brian and I have really backed off the nippling in the last week. This is because every time we give Kennedy the bottle she begins to vigorously suck and drink, however, once the milk enters her mouth and she swallows she gets this look on her face like she is drowning and begins to scream. At the doctors today, I got out Kennedy's bottle and showed the doctor. Kennedy only took two sucks and the doctor told me to stop. He said the he thinks that the milk is going down the wrong pipe, meaning it is going into her lungs - which is no good. This could cause Kennedy to develop Pneumonia. So he ordered a swallowing evaluation STAT and told us to feed her via the corpak, he does not want to give her the bottle. Our appointment is set for Thursday, unless there are any cancellations. Depending on the results of these tests we will know if Kennedy will need surgery to get a G-tube placed. I will keep you all posted.

By the way.....Kennedy weighs 9 lbs 6 ounces. She has gained 1 lb 5 ounces since she was released from the NICU. We are also beginning to increase her feeds. As of today she is getting 90 cc's (3 ounces) 6 times a day. In the next two or three weeks we would like to be up to 120 cc's (4 ounces) 6 times a day.

(Above: Auntie Tracey and cousin Brennen hanging out with Kennedy)

(Above: "I've got no strings to hold me down" this is one of the first and only pictures I have of Kennedy with no strings or cords attached. Gosh I can't wait for the day when she has no more wires)

(Above: Mommy and Kennedy)

(Above: Kennedy modeling her new outfit - I know she has alot of clothes but I couldn't resist)

(Above: Grandma and Grandpa hanging out with Kennedy while Brian and I made dinner)

Halloween

Monday, November 3, 2008

So Kennedy had a great 1st Halloween. She was an adorable Giraffe!!!! However, she was not able to stay in her outfit long because it was so darn hot. We made lots of stops on Halloween night. The three of us stopped by Ramonas house (one of Kennedy's Primary NICU Nurses). It was great to finally meet her husband and her gorgeous girls. I have heard alot about them, it was nice to finally but a face to a name.

Then we were off to my parents house. Our friends Jessica, Sean and their daughter Kaiti met us over there. We went around the block trick-or-treating and showing Kennedy off to all my moms neighbors. However, Kennedy was really cranky. The day before Halloween, I had to change Kennedy's Corpak. I moved it from the right nostril to the left nostril. Since the change she was really fussy and cranky. She also was chocking, coughing, sneezing, and gaging more then she ever has. So on Saturday, I decided to take it out and switch it back to the right nostril. Once I did that I had a completely different baby. Either the corpak was rubbing against something or there is some sort of blockage in her left nostril - who knows!!!

Back to Halloween....After my parents we went over to our best friends house Derek and Jen(Kennedy's Godparents). We hung out, watched movies, looked at wedding pictures and chatted the night away. It is so nice to have such great friends - we love you!!!

(Above: Kennedy did not know what to do once I put her in her Giraffe outfit)

(Above: The most perfect Giraffe in the whole world)

(Above: "Strike a Pose")

(Above: Kennedy and the best Godparents in the world)