Readmitted to Hospital

Well I keep Calling the on ENT about Kk's fever and throat hurting... Well he got worried and stay bring her to the er now .. So hour drive to oshners and we made it to the ER. Got into the ER I gave her motrin about hour or 2 before we got there.. She checked in with 98 temp.. no fever right... Maybe Hour later we got into a room AND BAMMM 104.2 WOW.. YEP. Highest fever shes ever had. Well They gave her som med for fever and the Ent's came in. They did a scope test in her nose to see the surgery. It was all good! YAY!! Something was good.. Well fould out she had Ulcers also all in her mouth which was why she was hurting in her mouth.. So lets see she Had Rash all over. high fever, and ulcers all in her mouth. The Ulcers are all on top of her pilate, her tongue and all over her gums. Poor baby right .. Well the Ent's say she needes to stay with some antibotics and fluids in her iv.. So with nothing with us we had to stay over night. All the baby wanted to do was sleep sleep and sleep. Well they say she just got hit with a big big viral. everything popped out with this viral that could pop out ... Ugh. Well We got home about 6 last night. Well now i think Ashlynn is starting to get sick Just what i need. She wont stop coughing.. Please dont let her get this ... Anyways kk should be going to her regular dr tomorrow. and her ent thursday. She still hasnt even been able to start school yet..

102.0 fever !!

Wow What else do I say? Yes Kaitlynn got rushed to Lake after hours last night which was a 2 hour wait for running 102 fever. They told me to go to the other walk in clinic to get her seen faster but they wouldnt take her. They told me I need to go straight to the Er. Well Went to the Er And there was a 6 hour wait.. HAHAHA So went Back to lakeafter hours. That Dr in there was WOW... He knew nothing. One of her glands were swollen, so he gave her infection med. HE didnt know what was up with her. Well I keep calling the on call dr for her dr and he is even worse.. PRAY KAITLYNN WILL GET BETTER !!

Ugh what next !

Well 2 days ago kk start breaking out with bumps all over. I took her to the dr yesterday bc i was worried it was bc of infection med. Well they did a blood work test and its Viral. Look at this poor baby now She's got bumps all over..

YAY SHES BEEN PLAYING !

Yay shes about back to normal.. She off her high dose pain meds !!!!! YAY !! Just on tyalnol now !! She still has some pains but has been playing around all day ! Thanks Again to everyone. Thank you so much to Carries Friend Teressa ! That was the sweet thing you could have done !!Thanks again!

YAY WE ARE HOME NOW !

We are home now yay ! Its been alittle rough here at home but we are getting through it . Its better here than at the hospital with her screaming she wants to go home NOW ! haha. All she wants is mommy and daddys bed. Every four hours shes in alot of pain which is when she needs more meds. She just took a hot bath which she didnt even want to do but i made her bc she hasnt had a bath since mon and it was driving me crazy ! I bath her everynight so its a big deal to me. hehe. I FINALLY GOT A GOOD BATH TOO !! YAY !! I also got to see my baby girl Ashlynn too ! She came straight to me when she saw me but shes not worried about me. :( She wants to go home with everyone who comes here. Anyways. Sorry it took me so long to update we got home and we all took naps ! When shes not napping shes in pain so its been hard to deal with ashlynn and kk at the same time! Thanks to everyone who prayed for her and to everyone who gave her gifts ! THANKS TO ALL !! I want to give some Big THANK YOUS to My mom who was by my side at all times. She did so much for me and kaitlynn. Thanks mom and I LOVE YOU ! I also want to Thank My Sister-in-law and my Mother-in-Law For watching Ashlynn and giving her all the love she needed while mommy wasnt there ! Thank yall so much ! Well, Kk is wanting me so i have to go. thanks everyone !

On their way home!!!

KK, mom and NaNa are all home bound!!!! I got to talk to KK on the phone and she sounds like a big girl!!!! You can REALLY tell a difference in her speech! It made me want to cry!!!!!

Going Home

I got a text message from Amy that they are going home today!!!!! As soon as the doctors finish up the paperwork she'll be on her way home with her little girl!

pony

Heres the Pony. The pony even gives kisses

yay!!!!

Yay the stich is out !!! Shes doing alot better now. She finally started to drink yay !! We should be able to come home tomorrow since shes drinking now !!!! They brought a baby pony up here to see her it was so cute.. shes been able to go to the play room at anytime! Except she cant walk bc of the iv in her foot. It's been hurting her ! Anyways IM hoping to get some sleep tonight . I been up since tue morning at 4:30am- i got about 1 hour sleep the all time .. blah...

Rough Rough Day !

Well we did getg out of the picu and into the ped. unit... But the dr came to her stich out this morning and kk was in a bad bad mood. She doesnt want anyone to come near her. So the Dr. Didnt try to take the stich out of her tongue. He said he will let the nurse do it, but the nurse came back and said they cant take it out he has to. Well Its 2:30 and they still didnt come yet to tak e it out. Shes out or now but shes been having a rough day today. Shes hurting alot today bc shes off those high high meds. But they did let her go to the play room ! She got to paint her ceiling tale! They take a piece of the tile off the ceiling and lets the kids paint them! She was relaxed paint but in my arms! I did get about 40 to 30 min nap in yay! Mom said ive been grouchy but i guess so being up for 33 hours straight!! Hopefully I'll get alot of rest tonight.. Heres some pi of kk in the play room.. and of them pulling her into her new room !

25 hours and still awake !

Yep thats right. I have been up for 25 hours now! Its amazing how we can do stuff like this for our kids ! God has given me the strength to stay up in the PICU. She will be released from the PICU this morning sometimes and will be moved to the Ped. Unit! Shes been crying for apple juice and coke so maybe thats a good sign. Maybe she will drink today and eat some liq. diet. If she does we get to go home depending on kk. She cried to the nurse telling her she wants to go home NOW. poor baby ! She was just given more meds for pain!

Midnight

OH wow !!!! Its midnight here and its so hard to stay awake. I am not able to sleep in the picu.. The nurse told me that she wouldn't tell if I did dose off some. But My backs on fire and when I do dose off Kk gets up or the nurse comes in. Looks like im gonna be doing a All nighter. Oh yeah I got up at 4:30am also rough! I AM STAY STRONG FOR MY BABY GIRL ! SHE'S MY HEART !!!
Kaitlynns been doing very well tonight. She as been waking up alot to have to go potty. They had to put a diaper on her tonight bc she was also wetting the bed in her sleep. She's a bed wetter at night and has to be on meds at night for wetting the beds at home. But b/c she cant eat or drink anything bc the tongue being stiched down shes not able to take her meds for the bed wetting. Her heart rate is finally better YAY!! Until she starts to cry or have some pains!!! Other than that shes been snoring my head off haha. They told me after this surgery she will start snoring alot. Well guess what they didnt lie !!! SHES LOUDER THAN MY DAD ! haha Poor baby ! Well Ill post in the mornings sometimes !!! Thanks
-AMY_

PICU

Kaitlynn has been doing very well since she just had a major surgery! I will be staying by her side at all times now. B/c she has a long stich that runs out her mouth from her tongue and she keeps wanting to pull it out.. Which will hurt her bad !!! She did let me bring her to te potty yay !!! They just gave her some more pain meds bc she was starting to hurt and shes out now !!!! Here's a picture of her in picu.. CARRIE YOU MIGHT PASSOUT DONT LOOK !! heheh I love you !!! Thanks for keeping everyone posted !Thanks for everyone who has tried calling or that has texted msg me. Only way i can talk in through texting No phones allowed!!! Well I'm off until tomorrow morning! Oh yeah her heart rate went up so they did have to put her on meds to bring it down. But shes good now !! luv yall !!

Update

Here's the text message I received from Amy about KK:

No talking on cell phones in here. She (KK) was having it rough when I came in. After an hour, she is now asleep in my lap. The hospital gave her a webkin and gave me $10 card to eat. She is hurting when she swallows. they also cleaned her tubes (ear tubes) out. She keeps trying to pull everything off plus the long stich (to keep her tounge down) is coming out of her mouth. She is screaming and I was scared for her.

In recovery

Just got a phone call that KK did fine with the surgery and she is now in recovery. Amy and my mom were on their way to find where KK was. I will update as I know more! Thanks for the continued prayers, they mean the world to our family!

Carrie

more pic

These two pictures are with the happy juice !! Ok I'm off for a while ! I'll update yall after shes out.. Well when I am able to...... It might be later on today until i get too.

pictures

Note: She woke up this morning telling me she can talk all better. Than she said what now mommy! It was heart breaking this morning!Heres some pictures !

She in Surgery

HEy everyone.. wow .. i might not be able to type to well right now .... They just brought her back at 9:35.. They Played with her and she rode in a car.. She had a blast before she went back.. They did give her happy juice.. She got crazy with it.. My nervous are going crazy right now... This is the worst thing ive ever been through.. It was so hard to see them take my baby. Yall keep praying right now... I will post some pictures in a few min. Ill post in a few !! THANKS EVERYONE !!!

Surgery's in The MORNING !

Yikes--- its alreay time for the surgery.... wow that two weeks went fast! We will be at the hospital for 8:00am. Which that means we have to leave at 6 to drop off my little girl at my sister-in-laws house and will be on the road for 6:30am. I will have my laptop and I'm hoping ey will have internet there to keep everyone posted. If they dont have it than my sister will be keeping everyone posted !! THANKS FOR ALL THE PRAYERS !

THANK YOU Mrs.Angela

I want to thank Angela for sending Kaitlynn pillow case night gowns for her surgery! That was very sweet of you ! God Bless You !!! Kaitlynn Loved her night gown dresses!!!!

*** 4 days left ***

Kaitlynn saw two Rainbows !!

My little girl saw two rainbows today. She was so excited! This was her first time ever seeing a rainbow. She asked if she can climb it! FUNNY!!! She's watched Care Bears before! Just thought I would share the picture of the rainbows!

Kaitlynn - Surgery number 5

Hello family and friend! I decided that the best way for all family and friends to find out what’s going on with our little Kaitlynn (KK) is through a blog for her.



EVERYONE READING THIS: I NEED YOUR PRAYERS, PLEASE!!!



My little girl has been through so much.
Let's go back and explain everything that's been going on with my little girl. Kaitlynn will be 4 Sept. 21st. She has had 4 ear tube surgeries. Yes that’s right 4! I started out with an ENT that did 3 of her surgeries. He also removed 1/2 of her adenoids and her tonsils. The reason why they would only do half the adenoids is because she has a bi-uvula.

(The uvula is a small piece of soft tissue that can be seen dangling down from the soft palate over the back of the tongue. The uvula is described variously shaped like a U, a tear or a grape. (Its name comes from the Latin word for "grape," uva.) The uvula has its own little muscle, the musculus uvuae, to help it stiffen and change shape, so it helps fill in the space at the back of the throat. It helps keep food from going down the wrong way down the breathingpassage when one swallows)

After Kaitlynn had 3 surgeries from one ENT and not getting any better, I gave up on that ENT. I switched her to another ENT that a friend told me about. He did another ear tube surgery and this time put a permanent tube in her ear. After that surgery she followed with two ear infections back to back, which was in Jan. 09. Finally after those two ear infection were done she hasn't had an ear infection since Jan.-Feb '09. This is the longest we have been without an ear infection. YAY!!!! He also found out that Kaitlynn had something call (VPI) Velopharyngeal Insufficiency.

What is velopharyngeal insufficiency?Soft palate at restVelopharyngeal insufficiency is a disorder resulting in the improper closing of the velopharyngeal sphincter (soft palate muscle in the mouth) during speech, allowing air to escape through the nose instead of the mouth.During speech, the velopharyngeal sphincter must close off the nose to properly pronounce strong consonants such as "p," "b," "g," "t" and "d."To close off the nose from the mouth during speech, several structures come together to achieve velopharyngeal closure.Normal speechThese include the velum (soft palate or roof of the mouth), the lateral pharyngeal walls (side walls of the throat) and the posterior pharyngeal wall (the back wall of the throat).If the velopharynx is not closed, snort sounds may be produced through the nose.Improper function of this structure also produces a nasal tone in the voice.

Well from Kaitlynn having so many ear infection and fluid in her ears her speech has become very unclear. She sounds like she's in a bubble when she talks, which makes it very unclear for others to understand her. I went through the school board and got her evaluated for speech. They agreed she really needed speech. She started speech at the end of the school year May09. She went twice a week for 30 min sessions each time. She did this for about 5 weeks until school got out. After this was over I was getting very worried about her going to Pre-K this year not talking very well. Therefore, I talk to my mom and we hired a private speech therapist to work from home. Her speech therapist was worried about Kaitlynn's speech and started to do some research on VPI. She came back to me and explained that we needed to find out if she really had VPI. We went to Oshners in New Orleans July 29, 2009 (which they specialized in VPL patients). At Oshners they did a speech test on her first. They had to hear her speak before testing and to find out what words she can say good for the other testing. After this testing we went to a room with a computer and a head piece that had a microphone by her nose and her mouth. This shows how much sound/air is coming out of her mouth and her nose. Of course Kaitlynn has a good bit of nasal speech. Some of her scoring was suppose to be around 9 they were around 64. That's when I was starting to get worried about what was going to happen. After this test we went to see the ENT. He also got Kaitlynn to do some talking so he can hear her. He didn't like what he heard either and wanted to do another test. They wanted to put a camera down her nose to see her palate. To do this we had to hold Kaitlynn down and let him put some numbing drops in her nose twice - This wasn't fun at all for Kaitlynn. After a few minutes we went to another room and they had to put a camera down her nose. Yes she was awake! While the camera was down her nose she had to talk and say the words that she could say. Well they keep taking pictures of her palate and found out the news that she has a hidden Cleft. This is called Occult Submucous Cleft Palate

A submucous cleft palate is one type of cleft palate. The word “palate” refers to the roof of the mouth and the term “cleft” indicates a split in the palate. The palate consists of both a bony portion (hard palate) and a muscular portion (soft palate). At the end of the soft palate, the small finger-like projection of tissue that hangs down is called the “uvula”. The term “submucous” refers to the fact that the cleft is covered over by the lining (mucous membrane) of the roof of the mouth. This covering of mucosa makes the cleft difficult to see when looking in the mouth. A submucous cleft of the soft palate is characterized by a midline deficiency or lack of muscular tissue and incorrect positioning of the muscles. A submucous cleft of the hard palate is defined as a bony defect in the midline or center of the bony palate. This can sometimes be felt as a notch or depression in the bony palate when the palate is palpated with a finger. Often a submucous cleft palate is associated with a bifid or cleft uvula.What are the effects of submucous cleft palate? When a submucous cleft is present, the muscles of the soft palate may not function properly and the individual is at risk for speech problems, middle ear disease, and swallowing difficulties. However, there are some individuals with a submucous cleft who have no apparentproblems. Of importance to all persons with the submucous cleft, and their family, is the knowledge that submucous cleft has the same genetic (hereditary) risk as an obvious cleft of the palate.How can a submucous cleft palate be identified?The most common reason that a child is evaluated for a submucous cleft palate is abnormal nasal speech. Other symptoms may include persistent middle ear disease and feeding/swallowing difficulties. A submucous cleft palate may be identified by the presence of a bifid uvula; a very thin translucent strip of lining (mucosa) in the middle of the roof of the mouth; and, a notch at the back edge of the hard palate that can be felt by the fingertip. However, in some children, the palate may appear normal on physical examination despite the fact that the child is experiencing speech problems, persistent ear disease, and/or swallowing difficulties. In such cases, special tests are necessary to fully assess the palate. These tests include x-ray examination and nasopharyngoscopy (looking at the palate through a very small tube that is placed in the nose). These evaluations are most commonly done by members of a cleft palate team. If you suspect your child has a submucous cleft, you shouldcontact a local cleft palate team. Should a submucous cleft be treated? The decision to treat a submucous cleft palate depends upon the consequences of the submucous cleft and is not based on the fact that it is present. The most common reason for treating an individual with a submucous cleft of the palate is because of abnormal speech. The speech has a nasal sound because air is lost through the nose. In such cases the child’s speech should be evaluated by a speech pathologist who, in consultation with other professionals, can diagnose the cause of the problem. If the palate cannot prevent air from escaping through the nose during speech, called velopharyngeal incompetence or VPI, then surgical repair of the palate will be required. Speech therapy alone cannot correct velopharyngeal incompetence. Feeding/swallowing problems can sometimes be managed through the use of special techniques which the feeding consultant on the cleft palate team can suggest. Ear problems should be treated by the child’s regular physician or by an ear, nose, and throat specialist. Treatment may include the use of antibiotics and/or surgical insertion of ventilating tubes in the ear drum. Proper management of the child’s ears is essential to ensure good hearing and proper speech development. If the feeding problems and/or chronic middle ear disease persist and are related to abnormal soft palate muscle function, then treatment of the submucous cleft palate is indicated. What treatment is available for submucous cleft palate?For individuals with submucous cleft and velopharyngeal incompetence, the most common treatment is surgical. The surgery consists of reconstruction of the abnormal tissues with a palatal repair with or without pharyngeal flap (pharyngoplasty). A primary goal of this surgery is to allow for normal speech production. This surgery is done in a hospital under general anesthesia. Pre- and post-surgical evaluation by members of a cleft palate team should be part of the overall treatment program.In a limited number of cases, velopharyngeal incompetence associated with a submucous cleft palate can be treated with an appliance that fits in the mouth and attaches to the teeth. This appliance is generally made by a dental specialist (prosthodontist) associated with a cleft palate team. Again, pre- and post-treatment evaluation by the cleft palate team should be part of this treatment program.

After the news of the cleft, the ENT said the word "Surgery". That was the end of me. I started to cry. I couldn’t take it. My baby has been though so much and when he told me it was a major surgery that was the end of it. I kept asking him if there was something else we can do other than surgery. Like the mouth piece. He told me that nothing else is going to help that she has a big space on her palate and had to have the surgery. He told me that I could have time to think about if I want to put her through this but told me that she would never talk if we didn't do the surgery. Well of course nobody wants there daughter to not be able to talk as they get older. So I told him let's go with it. I want her to talk. I don’t want her to be embarrassed about not talking clear. (She already gets embarrassed now at the age of 3 almost 4.) We got the surgery set for Aug.11th. She does have two types of insurance right now which will cover the whole surgery until Sept. Therefore the only finance issues we will be coming across are my husband taking off of work. The Lord will be with us!!! I need everyone to pray for my little girl.


We will go to Oshnsers for surgery on Aug.11th. They will keep her tongue down for surgery and will keep it down until the next day incase something happens with her breathing, the tongues not in the way. Also they will be some cuts on the back of her throat and use that skin for a flap for the palate. She will be in ICU for a day and night. They told me I am allowed to stay with her in ICU but, not allowed to sleep in there. They told me they have a waiting room if i need a few hours of sleep and if she is in a deep sleep to go in there and nap. My mom will be staying with me and helping KK in ICU for this night and I will send my husband home to stay with our 14 mth old baby. My husband will come back the next morning with the baby and we will be getting Kaitlynn in a private room than. They said this private room is like a hotel. So my husband, little 14 mth old, and my mom will be staying with me and Kaitlynn in this room. They said anyone is able to stay in there with her as long as she doesn’t get a sickness. They told us that she could stay in there from Tuesday - Friday. It depends on how she recovers and if she drink and eat, then she can go home. I will be posting while we are at the hospital and posting pictures of Kaitlynn for everyone. I hope y'all send this around and get all the prayers that we need!!!!!! God Bless y’all !!

Love,

Amy