So someone asked me about Joe and Megan saying Ky was in the “home stretch”. What is her baseline “normal”. We have had to learn to adjust to the fact that our version of “normal” will never be status quo for the rest of the world. We have come to terms with that and are learning to find ways to deal with this emotionally and physically. Bottom line is that Kyleigh will ALWAYS be challenged. We accept that we may never know the true extent of ALL of her issues but we have explored many of them already and are living with our “fixes” and trying to be still and allow these things to mesh into our lives for a while before we move onto anything else.

Going through her diagnosis is the easiest way to try and explain her “New normal”

V- Vertebrael – Ky had a tethered spinal cord which was stripped in March of last year. Only time will tell if that de-thering will stay that way or if she will need further surgeries to keep it “un-tethered”. She also has a SYMPTOMATIC Chiari Malformation. Many people do not even find this type of issue until adulthood. We will wait and see how this affects her in the future but I know in my heart, as her mom, that this affects her more than anyone wants to recognize. If we start to see symptoms we will have to head to a neurosurgeon once again (likely the person in Chicago) to have her further evaluated. Symptoms of her neuro issues are: Headache, nerve pain, tip toeing, feet turning in, nausea, vomiting, motility issues, etc.

A- Anal Atresia – Ky had an Imperforate anus which was repaired. Her chances for fecal continence as stated by Dr. Levitt are 99.9% BUT… that was before we knew about her major motility issues and had to deal with her feeding tube. He still maintains that she SHOULD have fecal continence but she will ALWAYS have laxatives (Senna) and other issues to deal with relating to the colon.

C – Cardiac. Kyleigh, although her heart was repaired, will always have Congenital Heart Disease. She will need extra precautions with any further anesthesia or infections. Also we won’t know until she is 6-10 years old if the patch that was created will hold together. A good number of cases with Ky’s condition will need a revision by the time they hit double digits in age. Right now we are on twice yearly visits with the Cardiologist only as monitoring. The one other thing that we are dealing with is the fact that Ky may have sustained damage to her Vagal Nerve. We knew that this was a possible side effect of her type of Open Heart surgery but the risks outweighed the benefits. Vagal Nerve damage can have a drastic effect on the function of most organs below the sternum. We suppose that her kidney, bladder, motility, etc issues could stem from this Vagal Nerve damage.

T/E – Right now Kyleigh is in a “puke free” period. We think we may have found a balance of medications to keep her GI system on track. She still occasionally refluxes but not as badly as she used to. Her tracheal bronchus will always be an issue that we keep in mind but it really doesn’t affect daily life. Kyleigh will remain on her 3 GI meds to help her intestines and colon MOVE like they should. We always have to be careful to keep her bacterias in check and avoid infections which all but SHUT DOWN her intestines.

R – Renal… ahhh the old kidneys. Kyleigh does have significant loss in function in her right kidney… once again only time will tell if that was congenital or if she truly is continuing to loose function there. Because of her kidneys Ky is limited in medications and we have to be careful with her bladder (which is also on the fritz). Right now we are in watch and wait period on these.

Others: Bladder. We are still dealing with the bladder full time. Ky is showing NO signs of ever being able to be continent of urine. This is pretty much the outlook that we have been given for this… less than 3% of kids in Ky’s situation will ever be continent of urine on their own. We have resolved that she will likely cath herself for the rest of her life. When she is old enough we will have a Mitrofanoff procedure done so that the cathing is less of an issue but Ky has to be somewhere between 5-7 years old before then. She is also on Ditropan and will stay on that – for what good I don’t know… she still leaks urine ALL the time and RARELY dry between cathings. Cathings rarely produce enough urine to keep her dry.

GI- Kyleigh continues to need her feeding tube to consume calories. We had almost gotten her up to 50% caloric intake by mouth before we all got sick back in November but now she is taking about 85% by tube again. We will continue to work toward real food again but know that it is a process that will take years. We have come to terms with the fact that she may be in double digits of age before we completely wein the tube and we are honestly okay with that. It has become a part of normal life now.

So… normal for us is tube feeding, cathings, meds, doctors appointments at least monthly… this is our new normal.

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