Sunday, September 18, 2005

Sick little girl...

WOW we have had a crazy couple weeks here! Frank left for Iraq on September 6th. It was hard to say goodbye. He is currently in Kuwait and will be moving into Iraq soon. Then his year deployment will officially start. The kids miss daddy a lot, but they have been able to talk to him on the phone a few times, so that has helped.

Two days after Frank left, Kennedy got really really sick. Since then I have been battling with doctors to figure out what is going on with her. Unfortunately we have been given the run around and she has not received adequate care. I have put together a journal to take to the patient representative at our hospital, so I thought I would post it here as well so you all can catch up. I tried to stick to the facts and keep emotions out of it for this purpose, but it has been a scary and exhausting ordeal. Please pray for my Kennedy that they figure out what is going on very soon! Thanks!

Date: Thursday, September 8, 2005
Kennedy gets a cold... her 3rd one in 6 weeks, I make an appointment for her at the Young Eagles Clinic with Ms. Morse on Friday.

Date: Friday, September 9, 2005
Kennedy wakes up gasping for air and has a temp over 105. I give her Motrin.
At the clinic she registers a temp of 103.
Ms. Morse says Kennedy's lungs are very raspy. She sends us for a chest x-ray to check for pneumonia. The x-ray shows pneumonia and reactive airway disease. She prescribes Omnicef and orders a nebulizer to be delivered to our home. She also prescribes Albuterol and Pulmicort. She ran some blood work and they did one nebulizer treatment in the clinic before we left. That night I give Kennedy her Omnicef. Motrin and Tylenol have been alternated throughout the day.

Date: Saturday, September 10, 2005
I give Kennedy her Omnicef and then a breathing treatment with Albuterol and saline. She starts shaking violently and her hands and feet turn blue. Her fever sores to 105.4. Motrin is given which she immediately throws up. She shakes for about 25 minutes and her fever goes down and she sleeps for over 2 hours. When she wakes up, her temp is over 104. I take her into the ER at BACH at the advice of a pharmacist. We get into triage and her temp is down to 103. NO pulse ox was taken. After waiting for almost 3 hours, and me going out to ask for Motrin twice, we see Dr. Blanton and I voice my concerns about Kennedy turning blue and say this cannot be normal. He says turning blue is part of the virus and basically brushes us off. He also states that her pulse ox was 100 percent and does not believe me when I say her pulse ox was never taken. The nurse comes in with 1½ teaspoons of Motrin. I tell her it is too much for Kennedy and she argues with me and gives it to her anyway. Her normal dose is ½ teaspoon. I inform the doctor of this and he says "Worst case scenario she will get a bad tummy ache." They do a nebulizer treatment with Albuterol on Kennedy and nothing happens. We are sent home with no help. Kennedy gets her second dose of Omnicef when we arrive home.

Date: Sunday, September 11, 2005
Kennedy is having a hard time breathing again but I am scared to give her the Albuterol, thinking she is having a reaction to it. I give her the Omnicef and then give her a breathing treatment with saline only. She tolerates this well. A few hours later her fever spikes to 104, she starts shaking and her hands and feet turn blue. I give her Motrin and watch her closely throughout the night, knowing the ER will not help me. Her fever escalated and dropped throughout the night and Tylenol and Motrin were alternated and she received her nighttime dose of Omnicef.

Date: Monday, September 12, 2005
Kennedy wakes up and gets her morning dose of Omnicef.
We have an appointment at the Young Eagles Clinic with Doctor Min. I voice my concerns about Kennedy turning blue and her spiking temps. He has no idea what is going on, so he chalks it up to the virus. Her lungs sound 100 percent clear. I tell him we will be seeing her cardiologist on Thursday and he says that is a good idea. Kennedy has no fevers or blueness today. Before bed she receives another dose of Omnicef.

Date: Tuesday, September 13, 2005
No doctor's appointments today. Kennedy spikes no fevers, and everything is fine. She receives her morning and evening doses of Omnicef.

Date: Wednesday, September 14, 2005
No doctor's appointments today. At 11:00 her TIPS advisor comes for our appointment. Kennedy starts crying uncontrollably. She feels warm so I go to get her thermometer. Her advisor holds Kennedy and she says, "She is getting really warm, really warm, ok she is hot, really hot!" I take her temp and it is up over 105. This is in a matter of 5 minutes. Her hands and feet turn blue and she is shaking uncontrollably. I give her Motrin, which she throws up. She falls asleep on my tummy, still shaking. We observe her for a while and her temp goes away, so we decide to watch her and not take her into the ER. I keep my son home from school so I do not have to put Kennedy in the back seat where I cannot see her. Kennedy's advisor comments that she has never seen ANYTHING like this and she is scared something is really wrong. Kennedy receives both her morning and evening doses of Omnicef.

Date: Thursday, September 15, 2005
In the middle of the night Kennedy rolls over next to me and she is hot, really hot. I jump up and turn on the light and she is blue again. I take her temp and it is over 103. She is very sound asleep but her breathing is quick and shallow. I watch her closely and about 20 minutes later her fever goes down and her hands and feet slowly go back to pink.
We go see Kennedy's cardiologist. He does an echocardiogram and says that her VSD is closed. He checks on her Vascular Ring and says it is not hurting her or constricting her airway right now. He says in the future she will have to have an operation, but she is ok for now. I, once again, voice my concerns about Kennedy turning blue and her spiking temps. He says this is not anything to do with her heart. He thinks it may be something hormonal and recommends we see an endocrinologist right away. Her thyroid screens have always come back normal, but he says the endocrinologist can do a deeper screen and maybe pick up something the other tests missed. He also re-emphasizes the importance of RSV shots this year. He looks at her blood work from September 9th and says she definitely does/did have pneumonia, and he also says she is VERY anemic. No one in the Young Eagles clinic has ever told me she was anemic. He looks at her blood work from June and says she was anemic then too and I have to get her on Iron right away. He tells me to ask for the endocrinologist referral when I see the pediatrician next.
Later in the afternoon Kennedy spikes another fever, but her hands and feet do not turn blue this time. Her fever drops about 25 minutes later. Kennedy receives both doses of her Omnicef.

Date: Friday, September 16, 2005
Captain Rowe sees Kennedy in the Young Eagles clinic. This is the first time she has seen Kennedy, and this appointment is supposed to be her 15-month check up (on her 16 month birthday). Kennedy's fever is down for the moment and she is happy and playing. I again voice my concerns that I think something is really wrong with Kennedy, and that turning blue cannot be normal. Captain Rowe says the spiking temps and her blue hands and feet are most likely a side effect of her virus and she does not seem too concerned. I tell her what the Cardiologist says and she reluctantly agrees to put in a referral for the Endocrinologist but says it will take up to 3 months before she will be seen. I ask her to redo her blood work from last week and she says it is not really necessary. I ask her to do it anyway so she does a CBC but will not do a blood culture since she is on antibiotics. She makes us an appointment to come back on Monday so she can follow up. We decide it is best to hold off on Kennedy's vaccinations until she is 100 percent well. Kennedy's Omnicef is gone.

Date: Saturday, September 17, 2005
Around 4am Kennedy wakes up screaming. I reach over to pat her back to sleep and she is burning up. I jump up, grab the thermometer and her temp is 105.3. Her hands and feet are blue again. I give her Motrin, which she immediately throws up. I take her temp again and it's 106.5. I take her and put her in a lukewarm bath, which brings her temp down a little. She falls back to sleep on my stomach. As soon as daylight hits, I start making phone calls and arrange for my older children to be taken care of so I can take Kennedy to the ER. A neighbor comes over to help me get the kids ready. She holds Kennedy and says that, "Kennedy is so, so hot, Renee!" Kennedy cannot even lift her own head. I give Kennedy another dose of Motrin and brush my hair and we are off to the ER in our pajamas leaving my neighbor to dress my other children. I take her to the ER at Gateway this time, which is 10 minutes from my house. Kennedy's temp is down to 102 when she sees the triage nurse. I burst into tears and tell her that Kennedy is SO sick, but every time I see a doctor she seems to get better. The nurse assures me that 102 is NOT better. An hour or so later, we get to the back and see a doctor. Again I voice my concerns about Kennedy's spiking temps and her hands and feet turning blue. He does a chest x-ray, a CBC, a blood culture and blood chemistry. He agrees that something weird is going on with Kennedy and she needs to be admitted and observed so they can run tests and figure this out. I agree wholeheartedly and feel thankful that someone is finally listening to me. He goes to start the paperwork and comes back to tell me that our insurance will not cover Kennedy being admitted at this hospital. She will have to go back to BACH. He calls the head doctor there, a doctor Sherwood… or Sherman, and he says that since Kennedy's fever is down right now he has no medical reason to admit her and if we show up we will be turned away. The doctor at Gateway apologizes, but his hands are tied unless we can pay for the hospital bill. He recommends that the next time her fever spikes I get her to BACH right away, no matter what the time, so maybe they can see what is happening and finally run tests. Once again, we are sent home with no help.

Sunday, September 18, 2005
Kennedy does great all day! She has no spiking temps and plays and eats normally. Around 7:30pm she starts crying uncontrollably. By 8:00 she is shaking and her temp is starting to rise. I get my other kids ready and we get out of the house. On the doctor's advice from Gateway I do not give Kennedy Motrin. Right before we leave her temp is 102.9. We arrive at the ER at BACH at 8:45pm. Her temp is 104.7. The nurse asks me when I last gave her medicine and I tell her the truth. She then yells at me for depriving my child of medicine to prove a point. I try to explain that no one has believed me all week long and she tells me she does not believe that. She gives Kennedy ¾ teaspoon of Tylenol. Kennedy throws up her Tylenol 15 minutes later. After another encounter with a very rude PA we are finally given a bed and see Phil Volkert. I tell him how scared I am that Kennedy is spiking these high temps after 11 days. He is caring and truly wants to get to the bottom of why Kennedy is doing this. He decides to pull her lab results from Gateway so he does not have to stick her again. Her chest x-ray and CBC from Gateway are normal, but the blood culture and blood chemistry are not back yet. A nurse comes in to take Kennedy's temperature again. It is 101.5. She rudely tells me to take Kennedy’s shirt off. I smile and say, "At least her temp is down a little, right?" She again rudely insists I still need to take her shirt off. I agree politely and she stomps out of the room. I am then glared at by a group of nurses who are obviously whispering about me. Not long after, Kennedy's fever breaks. She sits up and plays and acts like the happy baby she is. Mr. Volkert says that he cannot admit Kennedy because she looks so good now, even though he saw how badly she looked just 30 minutes before. He tells me to keep Kennedy's doctor appointment in the Young Eagle Clinic with Captain Rowe in the morning and demand that she is seen ASAP with the Endocrinologist. He says if she will not do it to speak to Dr. Min. Again, we are sent home.
Just before 5am Kennedy wakes screaming. I take her temp and it is 107.1. I give her Motrin, which she immediately throws up. I wipe her down with a cool cloth and her temp finally drops to 104.3. We are waiting for it to break now.

Friday, September 2, 2005

This N That...

Kennedy and I had a great time in California! I learned so much at the conference and got the chance to see friends and family I hadn't seen in over a year. We also got to go to Disneyland! :) It was good to get home though!

Kennedy is doing so, so well! She is up to 16lbs, 4oz as of two weeks ago. We went to see her GI and he has released her from his care! YAY! One more doctor down. :)

She has really taken off developmentally in the last month or so, She's been sitting on her own since she was 11 months, but now she can finally get into a sitting position from laying down. She's so proud of herself too! LOL She'll sit up, clap and say "yay!!!" Then she'll dive back down and do it all over again lol. It's so funny! The other day I was trying to do her hair and she kept trying to lay down and finally I said "Kennedy SIT up!" And she did! I'm still thinking that was a fluke though lol.

Besides saying "yay", she says "hi", she'll say "bye bye bye" (always 3 lol) and wave. She says and signs "all done" which really sounds like "ah dah". She does that on her own too with no prompting from me. She was sitting in the bath the other day and I poured water over her head and she immediately signed and said "ah dah! Ah dah!" LOL She can sign "more", but she has to be prompted still for that one. She shakes her head no, and she does this appropriately too, except I think she does it WAY too often! LOL! Stubborn little thing .

She's not crawling yet and still HATES to be put in the prone position, but she's scooting all over the carpet on her butt, I think she almost goes faster that way than she does rolling! LOL She's finally enjoying her jumper and putting weight on her legs! She goes crazy jumping in that thing now! I never thought that would happen! She loves to dance! Her favorite show is Rock Star NXS. My little rocker chick lol. She has rythm too! (She got that from Daddy for sure! LOL)

She has quite the onery streak in her too! LOL Her therapist was trying to get her to put blocks into a bucket last week and she wanted to hang onto those blocks! So she would kind of force them out of Kennedy's hand into the bucket and Kenn would yell at her and knock the whole bucket over! It was hilarious! (Though I was trying not to laugh! LOL)

OK I think that's it! I'm just so proud of her, she is doing things so fast right now! I still keep telling her she needs to crawl by the time she's 18 months old lol. She has till November 16th, we'll see!

Kassidy and Kameron started school a couple weeks ago. Kassidy is loving Kindergarten and making new friends quickly. I got a note from her teacher today saying that she is being a "mother hen" to the other kids (should I read that as "bossy"? LOL) I don't know where she could get THAT from! ;)

A couple funny Kassidy stories: I picked Kassidy up from school today and as we were walking to the car she suddenly got REALLY excited and said "Mommy you know what? There's this girl in my class named Sarobbie, and we were talking on the play ground today and I asked her if she had Down syndrome and she said YES!"
I said "Honey, I don't think Sarobbie knows what Down syndrome is, because she doesn't have it." LOL But Kassidy insisted that YES she does have Down syndrome because she said so! LOL I was doing everything in my power not to bust up laughing!

Then, tonight I was doing her hair (we went to get family pics done) and we were talking about when she gets married and Frank walked in and said "you're never getting married!" Kassidy said "DADDY, I HAVE to get married!" Frank said "Why?" She said "because, that's just what women do!" LOL
She is such a crack up!

Kameron has the same teacher and aides that he did last year and he is loving it! They told me they can't believe how far he has come this summer! He's turned into a real chatterbox :). He keeps us laughing constantly!

Like I said, pics coming soon, I hope!

I am busy trying to get ready for our buddy walk (be looking for an email soon) and we are starting our support group back up for the Fall. Actually we are starting TWO support groups. Our Up With Downs will resume from the Spring and we are starting a new group called Special Parents for Special Kids for parents with kids with ANY special need. There is a need for a group like this in our town, so I was approached to start one and I did! I just hope we have a good turn out!

Frank is getting ready to head back to Iraq very very soon. I can't give exact dates due to OSPEC regulations, but I'll update as soon as he's gone. Please be praying for his safety and the safety of his whole battalion.

Now some sad news, in the last 2 weeks, two families on our Down syndrome message boards have lost their babies :(. Kylee Rose was 4 months old and Reese Adam was 2 weeks old. Please keep Kylee and Reese's families in your prayers during this difficult time. My heart just breaks for them. You can visit their memorial pages by clicking on their names above.

Thank you all for checking in on Kennedy's page. I really am going to try to keep it better updated.