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