OK… I know many of you are friends and family and have LIVED this journey with us, but I often receive questions about Kyleigh and our journey. I was truly surprised that people, even those close to us, had no idea the full magnitude of Kyleigh’s illness. I am never afraid or offended in answering any questions and I invite you to ask.
Please feel free to forward any questions you have to my email at:
schmidt.amber@kentuckystudio.com
The story of Kyleigh Morgan begins long before her birth. In November of 2005 I went for an ultrasound. Because my OB is a doll and I whine mercilessly, he allowed me to have an early ultrasound. Truthfully, I was just DYING to hear someone say she was a girl! The very day I found out I was pregnant with her I went to Strasburg and bought the tiniest dress I could find. Not even visibly pregnant, I told the saleswoman that I was pregnant and having a girl. She asked how far along I was. I said proudly; 8 weeks. She looked puzzled and I knew she was trying to figure out how on earth I could know that it was a girl. I simply explained to her that this dress… was my FAITH gift. It was the physical embodiment of my faith that my daughter was in fact a daughter. She kind of chuckled and went on about covering thre dress in its finely printed plastic cover. As I was leaving she explained that I could exchange it in the even that I needed “a different color” and I told her that would not be necessary!
Pregnancy: (pregnancy blog)
After my 18 week ultrasound I pranced home with a few pictures in hand of my tiny princess. Then the phone rang. My whole world was about to come crashing down and I didn’t realize it. When I flipped over my cell I saw it… Dr.Y… and it was HIS cell number. I felt my chest tighten when I heard HIS voice on the other end. He explained that the U/S had revealed a Single Umbilical Artery (2 vessel cord). I immediately asked him how that could be? The Ultrasound tech had said everything “looks good”. Now it is “not good” all of the sudden? I am sure he could tell by the panic in my voice that he had upset me. He tried reassuring me with statistics that in 95% of these pregnancies this is of no effect and the babies are born perfectly fine, no complications and normal births. (I guess 5% Kyleigh’s nickname began way back then. Yes… as she habitually does, Kyleigh fell into the OTHER 5%.) Then he told me that he wanted to send me to a more advanced Ultrasound doctor. I assumed that would be in a few weeks once they got my appointment scheduled and I knew that this was going from bad to worse when Dr. Y said that my appointment was in an hour and I needed to turn around and come back NOW.
I called Troy, as I was driving back to the hospital and said COME NOW. Troy arrived just as I was heading back to the room and I could have lost it right then. I laid on the Ultrasound table for more than two hours that first time. There was silence as people fluttered in and out of the room. One person would start a sentence and the other would follow with … “hmmmm…”. I managed to fight back the tears for those first few hours which seemed like and eternity but no time at all in the same breath. The ultrasound was so intense that I had bruises on my belly. I hung on every word that each doctor said. I remember asking “What does that mean?” They rarely responded with much more than “we are just looking”. This was my third child. I knew they were doing more than looking.
When they moved me to ANOTHER room, I officially LOST it. This was it. This was WORSE. The flurry of emotions and fear that ensued is something that I cannot describe with words. ALL of the doctors were called into a conference in the next room while we anxiously awaited “the verdict”. Yet again… NOT good. It seemed like the whole thing was going from bad to worse! Finally one emerged into the room with a diagram of a heart. I thought I was going to vomit. In carrying that diagram I knew he was coming to tell us what was WRONG, which only confirmed my fears. He explained that, as best they could tell, Kyleigh was missing a LARGE portion of the structures in her heart. She had several different defects but somehow, there was no stenosis (dying or getting smaller). With the amount of structure missing from her heart they could not explain why her heart was not failing because for all intensive purposes it should have been. I knew. Way back then, just like i know now, that my daughter has a purpose in this life. Her Heavenly Father has given her a testimony to share with the world. She has a story to tell about the MIRACLE of her own life and until she can tell it herself, I am here to speak for her. I will NEVER stop singing the praises of a God who heals, comforts and restores. I have experienced EACH of these and they are each miraculous and wonderful!
He continued on with his explanations but honestly I could not tell you what else he said. My mind went numb along with the rest of my body. They recommended that we have an Amnio THAT DAY to check for DiGeorge Syndrome and Trisomy 13 (neither of which are compatible with life). With the combination of issues they had serious questions about her viability. I know that some people take time to think over an amnio but for us, the way in which this was presented, there was no choice. I wanted to know and to know NOW what was wrong. With Troy’s family history of issues, and my extended family I was dreading the worst. Any syndrome that is “incompatible with life” is a parent’s worst nightmare. We would have to wait a few weeks to hear the results of the amnio and those would be the longest weeks of my life until that point.
On the brighter side, I would know with 100% accuracy if she was a girl! I have always managed to find the happy things about her situation.
I remember sitting in Dr.Y’s office after that horrible 4 hour process. I remember him being completely speechless as he explained how NORMALLY Single Umbilical Arteries are no big deal. He even pulled out his medical text book to look up DiGeorge as he had no idea what it was. He was stunned, we were stunned… we all cried. As I stared out that window and watched the snow begin to fall, I remember that moment in time as if it were a frozen artifact in my head. A bad movie scene that played over and over again in the weeks to come. I remember EXACTLY what Troy was wearing and the sick look on his face. I remember my khackis and strappy black slingbacks. I had felt so good going into that ultrasound. I will never forget how the tears stung my face as they dripped off my chin and hit my thighs. I will never forget how the residual cold from the window seemed to echo the chill in my mind and bones. It was a cold day. Very cold, dark and painful. The skies seemed to mirror that back to us and I knew that it must have been a cold, dark and painful for my Heavenly Father too. It was as if His tears were falling through the snow and I knew I was not alone. Never alone. But it was still cold and awful.
We were then presented with the most awful scenario that I had ever envisioned until that point. Dr. Y explained that if we wanted to terminate we would need to make that decision, likely, BEFORE the Amnio results return. I was 18 weeks at that point and the amnio usually took 4-6 weeks to return results. I know that both he and Troy said they would support my decision. All I could get to come out of my mouth was “I can’t… I can’t do this.” I think that Dr. Y thought that meant I wanted to terminate because he started to get the business card of a colleague out of his desk. What I meant was I could not choose life or death for her. I had no right.
That day I don’t know that I made a conscious decision to choose life for her as much as a I made a decision NOT to choose at all. This was the perfect princess that I had prayed for and wanted more than life itself. I guess that day was really the start of my fight for her. Something rose up in me that day and I chose to never again be afraid. Never again feel helpless. I would never again – NOT CHOOSE. I got online and began to research the best and worst scenarios. I had 10 million things in my head knowing that it could play out in any of those ways or in none of them. It was at that point that I chose to fight for her. Surgery, we would do it. Better doctors, we would find them. Different states, we would drive, fly, go by boat if we had too. I would stop at nothing. God had given her to me to protect with all of my being and I intended to do just that. To this very day and until she draws her last breath I will fight for her. I will fight for her health, her life, her love and some kind of normal. As long as I have life in my body… I will never stop fighting for her.
Two grueling weeks later I received a phone call from explaining the Amnio results. Yes! Kyleigh was definitely 100% a girl. She also had NO genetic markers for ANY of the syndromes they had “FISH”ed for. This meant NO Trisomy and No DiGeorge. They concluded that her heart and single umbilical artery were isolated incidents.
We were referred to a pediatric cardiologist, Dr. Cottrill. She continued to follow Kyleigh, in utero, via echo ultrasound. She prepared us for the worst but hoped for the best. At worst, Kyleigh would need to be flown to Cincinnati or even Michigan immediately after birthday for open heart surgery. At best, she would do well outside the womb on medication and monitoring and we would be able to bring her home for a few months to grow. This would make the surgery she needed, WAY less risky.
7.13.06 The Day that Changed everything….
The pregnancy continued, closely monitored by 5 different specialists. They were all “on call” when delivery day came on July 13, 2006
My mother told me that July 13 was a bad day to have a baby. Maybe she was right. My dear friend and fellow photographer, Lisa Zanchi, came from Louisville to document the day and her birth. This was likely my last pregnancy and I wanted to remember every moment of it. Tender moments after the delivery, kisses and tears, the first moments bonding and nursing, window light photos of a newly emerged soul in tiny form. Secretly I wanted Lisa there just in case. I wanted to make sure that IF something happened that I would not MISS one moment of the time that Ky was here with us. I wanted to make SURE that, if for some crazy reason, I was not able to see her that I would have Lisa there to document her. Some small part of me wondered if I would end up like the other families that I have served as a NILMDTS photographer. I have to be honest when I say that in the weeks leading up to the delivery I made many a promise and a bargain with God. I am still trying to hold up my end of the deal…..
The morning was early… I had spent a week cleaning my house and perfecting her room, moving all the tiny pieces and parts around, dressing and undressing her bed, Arranging and re-arranging her clothing. We arrived at the hospital and of COURSE no one could get an IV in me…. that is something that Ky gets honestly. Finally a familiar face appeared in the doorway, she was the sister of the bride whose wedding I had just photographed the week before! She came in and was able to get my IV in. We went back and the spinal was taken care of and as I got all warm, tingly, and nauseated, Troy came in. He had his camera in hand. We were ready to meet our princess. Even in preparing for “the worst” we had no idea what was about to happen.
At 8:20 in the morning I gave birth to a beautiful but tiny 6lb 10 oz Ky via c-section. Did you know that in Hawaiian “Kai” means beautiful? She was definitely that! When Dr. Y pulled her out I will never forget him saying.. “Where did you come from? You are tiny!! You don’t belong in this family!” True. Both of the boys had tipped the scales at nearly 9 lb!!!
Immediately after birth she did great. She did not require interventions, resuscitation or even o2. She even went to the NORMAL nursery. All of the specialists dispersed back to their respective locations breathing a sigh of relief that she was “fine”. We headed to recovery and I expected Troy to come bringing Ky back to me to nurse just like he had Ross. That all changed when the nurse attempted to take her temperature, only to find that she was minus an anus. Yes you read that correctly… there was no hole. On top of the heart condition, which we knew was not right, and the SUA (single umbilical artery); she now had NO hiney hole. We were totally floored. I saw Dr. Y walk in the room with his head hung low and I knew. Something was wrong… more wrong than anyone would tell me.
This is the point in the story when most parents would have been crying, having a break down, praying to God to spare their child’s life but us… we were stupid, ignorant, protected maybe from the pain that would have ensued had we understood the ramifications of the following conversation:
Me: “Where’s Kyleigh? Is she ok?”
Troy: (nearly laughing) “her heart is fine… but she has no butt”
Me: (almost screaming, laughing and crying at the same time) “NO BUTT?? HOW does that happen??” (insert long silence as we both try and find ANYTHING to say about a buttless child….
Me: “Isn’t that STANDARD packaging?”
Troy: “Evidently not.”
I could not envision what he was saying… I needed SEE her NOW!!! I had envisioned a baby with no butt CHEEKS. I envisioned the most hideious this you can come up with in trying to prepare your mind for “the worst”. I had no idea that she LOOKED perfect yet there was so much wrong. I had not gotten a good look at her with it being a C-section so I had no idea what this would look like! I had to laugh. What else is there to do? My kid came out with NO BUTT?!!! How many people do YOU know with no butthole? (all IA parents- you guys don’t count in this answer!) At any rate Ky would require a set of three surgeries to correct this matter, the first of which being a colostomy that would provide life saving means of excreting her waste until her anus could be repaired. Fine! Surgery it is. Where do we sign the papers? (if you are counting… we are already up to 4 surgeries in our tally of “to be done” surgeries. We knew immediately after she was born that she would eventually require open heart surgery. After that we thought… what’s three more?? We’ll just have a big surgery party!! Bring it on!)
They had moved her STRAIGHT to the NICU and called for transport to UK as our hospital was not equipped to handle the kind of care she would need. That night Troy had to run over to UK (which I can literally SEE from the window of my hospital) to sign paperwork to have her admitted there for surgery. I stayed behind (by force not choice… it is completely unlike me to be uninvolved). I spent as much time as they would allow me in the NICU. I was up and walking to the NICU within 3 hours of the c-section. I think I had so much adrenaline going through me that I was not even FEELING half of the pain that I was in.
And then it happened. In the middle of my confused euphoria of the wearing off spinal and my rather shocked laughter, my normally smiling and upbeat Dr. Y emerged into the recovery room with a look on his face like I will never forget. I close my eyes and I can still see it and feel the rush that it sent down my spine. He came to explain to me that because of her heart (which we had found to have a larger issue than originally thought-imagine that Ky be complicated??? HAH!), her anus and the Single Umbilical Artery the NICU docs immediately labeled her VATER or VACTERLS Association. He also told us that many of these children had a TEF (tracheal esophageal fistula) and that they were currently trying to get a tube down Ky. If the tube did NOT go it would mean she had a TEF. I asked him point blank “So what does that mean? How do we fix that?” (already assuming that our surgery count would increase again) It was at that point that he just looked at the floor. He said nothing more because they came to wheel me into the NICU to see her. I hung on that last look he gave. It was ominous and unrelenting. It was the “hopeless” look. In knowing tons of kids, now, that have had TEF repairs I realize that it was not as bad as I envisioned but by this point I was starting to loose the euphoria (and the spinal) and I was scared… really scared. I wasn’t scared that she was going to die necessarily, but more of WHAT ELSE? What else is there? What else can POSSIBLY go wrong?
At the very least her birthday was eventful and we are one of the lucky few patients to have a neonatalogist with the knowledge and ability to give Kyleigh a diagnosis immediately after birth. Because VACTERLS Association has MANY organ systems involved it is very important to be able to identify a child early and do everything you can to identify any issues in their systems. This gives them the best chance at averting complications from unknown conditions. Because Kyleigh was labeled at birth, the NICU did a thorough exam of ALL systems including, brain, heart, endocrine, kidneys, intestines, spine, ortho, etc.
Friday morning they were SUPPOSED to pick up Ky first thing, but she got “bumped” because she was stable. You know there is nothing like someone telling you… “if you don’t do this surgery your kid will die”, yet somehow she is not DIRE enough to be transported now… WTH?It made no sense to me and I was completely un-medicated by this point. So I, in all my lucid “amberness” was on the phone every 2 hours asking when were they coming? I must interject that I noticed from BEFORE our child was even sent to KY Childrens’ that communication was NOT their strong point (Joe being excluded from my generalization… as he very often is).
At 4 pm they came for her… in her tiny plastic chariot with nothing but the diaper and tubes attached they took her in a whirlwind. The nurse called for a wheelchair for me but said that it could be 15-30 minutes to get one. The Transporters were FAST…. they would be in and out in 10 minutes tops… and I was NOT about to let her go without seeing it and telling her how much I loved her. I walked (with lightning speed I might add- I was at least 4 doors ahead of my parents and Troy!) to the NICU without any assistance. By the time I got there they already had her in the isolette. They allowed me to kiss her goodbye and then they were gone.
It would be almost 6 more hours before I was able to get an update and that about sent me over the edge. Even my OB called to try and find out the status of the baby that he delivered. That evening, sometime after 9 pm, I received a phone call from Kyleigh’s surgeon. (At one day old my daughter had “a surgeon”…sigh) He politely introduced himself, in his thick Philly accent, as Dr. Joe Iocono. “Dr. Joe” for short. Even through the leftover spinal and major narcotics I must be a hard nose. Joe reiterated to me that there was NO need for me to come to KCH. He “instructed” me to stay at Baptist and he would call when the surgery was done. He told me that Ky would be fine and he would take care of her. Almost three years later, Joe would know better…. LOL.
I immediately hung up the phone and called Dr.Y. I told him that I was leaving with or without his help. I told him I could check myself out AMA or he could release me and give me the meds I needed to feel better. Troy recounted to me recently that I was on the phone at nearly midnight giving my poor Dr. Y the tenth degree “If you don’t let me out of here with drugs… I will leave… I will leave without your help… You can either give me the drugs and help me or I can go without it.” I have to laugh because I can SO hear myself saying it. Even though I don’t “remember” it… I wish I had a video to laugh at. He explained that he could call UK and release me to an OB there and I would be in the same hospital with Ky. Even having just had a C-section I was NOT interested in being in the hospital. I wanted to be with Ky no matter what that meant.
We agreed upon a 3-4 am checkout. That would put me at 36 hours postpartum. That was of course conditional upon me promising to call his cell if at any point I was NOT ok. Agreed.If we back up to Ross’s birth just a little over a year before… I had had some major complications from my first c-section. I ended up spending almost 3 weeks in the hospital on the heart floor because I ended up with an infection, which freaked my heart out. Dr.Y had feared a pulmonary embolism with that c-section and we ended up doing a D&C just 3 weeks after the c-section (which I guess is not highly advisable but had to be done) so Dr. Y had reason to worry about me at this point. I must also interject that God must truly have place His healing hands on my body. He must have known that I would need my strength and health for the two years that were about to ensue because I have NEVER felt better than I did two weeks after Ky’s birth. I think I could have run a mile at that point because I really did feel great. But I digress… this story is not about me… back to regularly scheduled programming.
I nodded off to sleep at some point but really it was worthless. Troy snored and I was glad about that. He needed the sleep. Finally at 2 am I got up and started packing. (Troy was still snoring… I just left him that way.) By the time 3:30 am rolled around I woke Troy up and made him pack the stuff to car. At 3:57 am I went to the nurses station and asked them to page the on call to let me go. I wanted it to be one minute past 4 am when I walked out that door. I knew that my scripts were on my chart and all I needed was someone’s signature! 15 minutes later I was pacing and a sleepy Doctor emerged into the hallway to release me. I nearly ran to the car.
We stopped at a 24 hour pharmacy to have my scripts filled and we were off to figure out the world of KCH. What an experience that would be. By the time we parked (in the old structure for those of you KCH’ers… you know what I mean! UGH), it was 6:30 am and I KNEW shift change was coming at 7 am. With every ounce of my being I ran as fast as I could to that NICU.
At 5 minutes until 7 am we were standing by her bed and were able to meet her surgeon, Dr. Joe Iocono, in person.
~I have to take a brief break in the story here to explain Dr. Joe Iocono to the world. Not that Joe needs explanation or couldn’t speak for himself but from a parent’s perspective. I know that I am not the only one who feels this way so I speak for so many parents who are truly thankful to him! To all who have googled his name and landed here… trust me you want to continue reading. We had no clue what an influence he would have in our lives and how he would FOREVER change Kyleigh’s. Yes… I know nostalgia eventually sets in, but someone who has saved your child’s life on MULTIPLE occasions… there is nothing nostalgic about that. It is pure admiration and gratefulness. I cannot express, with words, the amount of respect that I have for this man. Dr. Joe is this amazing, larger than life person. His voice is as big as his countenance and his reputation proceeds him. Yet this amazing surgeon is often reduced to giggle voices and sharing his pens with my tiny princess. It is quite amazing that in the same breath he can bark orders at his “flock” and make Kyleigh laugh. Truth be told, Kyleigh is pretty terrified of him, but she will eventually grow to appreciate him as much we do. (I am sure this appreciation will begin to set in about teen years as she realizes that her colostomy scar (I have seen quite a few of these now) is definitely the prettiest I have EVER seen and will be PERFECTLY hidden by her bikini that will inevitably be too small for mom and dad’s taste.
That first day we had no idea that Joe would become a great friend and guiding light for us on this journey, but from the moment we met him we knew he was different. Not the same political, guarded airs as the others. He was honest and had this odd sense of balance, brash and calm. I didn’t know how to take him for a while and nearly fired him at our 2 week appointment. Joe has made me cry on more than one occasion, has been right more times than wrong and somehow understands exactly how to get me to shut up (which is a hard thing to do).
Most of all he has ALWAYS listened, always cared, always been there. Late nights, weekends, holidays, vacations, birthdays, he is there. I tell Joe that he went on a one man mission to renew our faith in “the system” and he succeeded. Our life would be vastly different without Joe, and his FAMILY who have enriched our lives so richly and blessed us with their sweet spirits and laughter. I truly TRULY believe that God has placed him and his family in our lives to bring us joy and comfort. I thank God for Joe, Susan, Amanda and Lauren on a daily basis and pray that they can even begin to understand how much they mean to us!
To those considering Dr. Joe Iocono for your child… you will NEVER find a more kind, knowledgeable and skilled surgeon. He is a keeper. There are very few doctors out there who truly take a vested interest in their patients for the long term and he is one of them. My daughter has been to the best specialists and surgeons in the WORLD and there is NO other Dr. Joe. He is simply the best. Period.~
The First Surgery at 42 hours old: Colostomy
The next person we would encounter was Ky’s anesthesiologist, Dr. Aru Reddy, who is still very dear to us. I remember watching “the flock” receded down the hallway at mach 20 (Joe walks with a purpose… when he walks the hallways at the hospital there is no sauntering!) and feeling the burning sting of the tears that inevitably came with or without my approval. Dr. Reddy promised that she would take care of Ky. She hugged me and told me that she would be fine. I knew in that moment that she would. Dr. Reddy has been through the ringer with us. I think she would laugh if she heard me describe my child as HARD to anesthetize. Ky is nearly impossible to GET down and KEEP down. Maybe that is why she is still alive but it makes for very eventful times in post op. God knows she would not be my kid if she were not a fighter but sometimes I wish I could tone that down a little for her. I have heard stories come out of Ky’s OR that just made me chuckle and say “That’s my kid”. Kyleigh seems to astonish those who are not “used to” her. But for those who are … the select few who “get it”… we are forever grateful. We are more grateful that we had a God who knows JUST what we need before we ever need it! Who places these amazing people in our lives to lead and protect us.
Ky did relatively well for that first surgery but did require some pain management. (that was just the beginning of “pain management issues” for her… HAH!) She had trouble regulating her temperature due to her poor circulation (yet another indication of things to come). It took a week to get her warm enough to take home.
The day after Ky’s colostomy placement was another of “those days”. We were able to be in rounds when the results of the Spinal MRI came back. I was standing next to her bed, all of two days postpartum, when the doctor looked me straight in the eyes and said “she has spina bifida occulta”. First of all the words Spina Bifida triggered my gag reflex and I informed him that if I did not sit at that very moment I was going to puke on his shoes. The second… Occulta… I failed my medical terminology class and my mind was instantly reminded of that as that word sounded hugely ominous and reverberated through my head. The more common term was Tethered Cord. Why the neonatlogist didn’t feel the need to call it that… who knows. He was teaching I guess but I like the word Tethered Cord much better. Among her other issues, we were informed that day that Ky would likely need Neurosurgery (surgery #6 in the count for those keeping track).
The first five days it just seemed like the diagnoses kept piling up yet our daughter laid there looking tiny and perfect. How on earth could such a tiny little body look so perfect on the outside yet have so much going wrong on the inside? I wish I could talk to every VACTERL parent on the first day of their child’s life and tell them all the things that will swirl through their minds. I wish I could tell that they will cry and it will hurt worse than anything else you have ever known. I wish I could tell them that they will feel hopeless at points BUT… do not give up. There WILL come a day when you will look back and it will ALL be worth it. There will be a day, in the years to follow, when you realize that you are stronger than you ever thought possible. So STAND fast… lean on your Heavenly Father and never give up. That is what I would tell any new VACTERL parent.
After 5 long days (which was actually on the short side I hear!) we were able to take her home. The next few weeks would be nothing short of pure hell for us. Our baby was a lot sicker than we knew or would admit. Weekly cardiology appointments brought on Stage 1, then Stage 2 heart failure… which brought more medications and “issues”. At one point during the height of Ky’s heart failure she was on 13 medications totaling 37 doses a day.
To top it all off, she was vomiting everything she ate. They said that Ky would HAVE to gain weight (from 6 lb to 10 lb minimum) in order to have the surgery she needed to repair her heart. The structures of her heart were too small at 6 lb to try the surgery on. But how would we ever get her to 10 lb when we were LOOSING weight.
8 weeks-Failure to Thrive (#1 of god knows how many… we stopped counting):
After 8 weeks of struggling to get Ky to eat, begging her, crying with her, praying for her, FORCING her to eat like a baby bird with a syringe, thickening formula, med trials and loosing weight she was labeled “Failure to Thrive” and we were admitted. A five day hospital stay brought a diagnosis of GERD due to heart failure. They placed an NG tube (Nasogastric Tube). We welcomed the NG tube because it meant no more struggling to force her to eat. It also meant less pain for her. Once again here is where we vary from the “normal” parents. Most parents would be distraught if they were told their child would need to feed through a tube… us… we were actually relieved. What we had been doing to get our baby to eat was nothing short of inhumane and most of what we did get down came back up. No formal testing was done because they did not feel that the condition of her heart was stable enough to proceed with testing.
During this stay, our emotions were put through the ringer. We were asked over and over again the SAME questions. They continued to have us recount the many ways in which we had tried to get her to feed. We were third time parents, both of us more stubborn than the other, TRUST ME… if I said we did everything… we did EVERYTHING. There seemed to be a small portion of the “flock” who wondered if we were neglecting our child. I managed to overhear this in the hallway one morning and had a complete breakdown over it. I think it was Joe who saved us from that WAY back when. I was insulted and hurt by the whole thing and swore off Kentucky Children’s. Obviously I unfairly judged them as I consider that place HOME now! (Sorry KCH… you know I love you but those “flocklings” were crazy!)
Kyleigh did well with the NG tube feeds and we quickly became pros. Throughout our entire journey I am proud to say, we have had very little nursing help. One would assume that we have a nurse daily or a night nurse but we have never had one. The closest we came was Tammy, who has been Ky’s nurse since 8 week who would do her weekly weight and heart checks. As far as daily care of the ostomy, NG tube, heart monitor etc, we have always done that ourselves. I think I shocked Dr. Y (our OBGYN) when I told him about us placing the NG tube ourselves but any tube feeding parent would agree with me that when your child yanks the tube… you don’t have time to wait on a nurse to put it back in.. you just stick it in and you are done!
We encouraged Ky to eat the bottle during the day and made up the missed calories at night. By keeping the bottle and passy sucking integrated into her daily routine we were able to avoid an oral aversion. It worked out great. Ky was never able to eat more than 4 or so ounces per day and always had to make up 30+ at night but that was ok. At least we were still taking SOMETHING by mouth.
Open Heart Surgery: Life in the CICU
After 4 more long months we MADE it to 10 lb (she was supposed to be 12-13 but they settled for 10 lb.) and they decided that her heart could not wait any longer. Our open heart surgery was scheduled for two weeks later…. the last day of February 2007 in Cincinnati. We did our pre-op… blood work, cross and type for the 4-6 liters that she would require during the surgery, anesthesia consults, in depth records from all other issues and surgeries and known issues. Once again it was the calm before the storm.
One of my dearest friends, Julie, flew in from Utah to stay with my boys so that they could stay at home and be as normal as possible. In my soul I KNEW that we would be in Cincinnati for at least 2-3 weeks. Our surgeon,Dr. Pirooz Eghtesady, told us it would be 2-3 days most likely but I could FEEL it. It was one of those things I just KNEW. As time drug on many more of my amazingly wonderful friends would come to my rescue me from myself. My friend Cristy flew from Florida and Kimberly drove from Illinois. Heather came from Indiana, Susan from Ohio and so many more I can barely count!
We arrived at the hospital at 5 am and handed her over to the Anesthesiologist at 6 am. The surgery, which was supposed to be relatively straightforward 5-6 hours, drug on for more than 9 hours. The OR nurse finally came to tell us that things went well and they were CLOSING. I breathed a sigh of relief and went to my laptop to update. Not more than 5 minutes later she came, walking too quickly for my comfort, to let us know that there were “complications”. My heart sank. It would be another 4 hours before they were able to get her STABLE enough for us to come back to see her. It was awful. All told it was the worst 13 hours of my life.
The problems started when they were taking her down off “bypass”. She crashed and they had to go back in and remove a muscle mass in the top of her heart which was unseen before and caused a complete blockage. Then, after they finally did get her into the ICU, they were having major rhythm issues. Into the evening, she spiked a fever over 106 and became febrile. It was a HARD night but I was exhausted so I slept. Troy managed to get a sleep room and he too got some shut eye. (Hint: to Cincy Heart Parents: Parents of Kids who have been in the OR that day- you get first preference on the sleep rooms!!!)
Day two of CICU was another “worst day of my life”. That day will live in infamy in my mind. I can imagine the only thing WORSE than Day two would have been burying Ky. I almost think that it was worse than surgery day itself. She sustained a 106 fever and her body went into convulsions. We burrito wrapped her to keep her from pulling her leads. She moaned, cried, coughed and gagged. The entire time the nurses kept telling us that they needed her to be still. She was, afterall, still attached to as many tubes and wires as you could count on your fingers and toes and her heart was still being mechanically run by a pacer. All told, Ky seized for nearly 8 hours and by the end of those hours I thought I might literally be sick. We stood for 8 hours and held our baby down to prevent her from pulling her wires. We don’t actually know how much of the convulsing was pain and how much was fever / other factors but I know that we had her MAXED out on pain meds and she was still writhing. That night I vowed that I would NEVER again allow her to be in THAT kind of pain again. I know that the CICU docs were worried about collateral damage because there were orders of CT scans, etc. By the grace of God there was no brain damage and her wires stayed attached. 
Late in the evening of that horrible, awful day, a beautiful, amazing, wonderful nurse told me that we should LEAVE the hospital… go get something to eat… or just look at the sky… but we needed to go. She was right. She must have seen that we were about to blow a gasket and thank God she had the foresight to take care of US as well as our child. She promised that she would be with Ky every minute until we got back and true to her word she was still standing beside her bed when we returned. I truly believe that she never left the room the entire time we were gone. If I could find this nurse again I would hug her and give her my last dollar for that time. It kept us sane.
Ky progressed, albeit slowly, and another week later was finally sent to “the floor” to head to discharge. I never felt like she was OK let alone good but I squashed my fears telling myself that I had no idea what a post OHS baby SHOULD look like. The night before we were to go home, we stood by her bedside for 9 solid hours. I was convinced Ky was in pain. “They” told me there was no way she should be. She was far enough out that she should be ok. They told me that if they had to give her any narcotics she would not be able to go home. We were torn up over this. We finally figured out that by turning Ky on her side and patting her on the back it kept her from screaming bloody murder. She finally exhausted herself and would drift in and out of sleep.
Troy and I took turns and finally at 4 am our nurse came into our room. She told us that we should go to sleep because tomorrow was coming fast and we would need our rest. She had handed off her other patients and was going to stand with Ky while we slept for a bit. Even she KNEW there was something wrong. We KNEW there was something wrong. The resident on call was an idiot (and in regard to our medical professionals I do NOT use that term lightly… I have more admiration and respect for our doctors than anyone I know…) and I was SO glad to see the team coming for rounds. They immediately pulled in a portable echo and there it was. Her lung was collapsed (still) and there was an 80CC pocket of fluid BEHIND her heart. There was something wrong. It was VERY wrong. Kyleigh was literally drowning in her own chest.
As fast as we had the echo in the room we were back in the CICU and it was decided within an hour that they would not be able to reach the fluid with a needle. Rounds happened at 7:30 am, by 8:30 they were doing the echo and by 10 am Ky was back in the OR again for Open Heart #2. This time when Dr. Eghtesady opened her incision puss flew “everywhere” as he said. On top of everything else she had a major sternal infection that among other things grew two forms of staph. ( I hate to say I told you so… but I DO distinctly remember telling them that I thought her sternal scar looked angry and I thought it was NOT GOOD that she oozed pus when they pulled her pacer wires. They wrote it off to hysterical mom of course… 10 pts for hysterical mom!!!!!!!)
Another week and a half in the CICU brought self extubation THREE times. Ky became a MASTER of that. Even weeks later Kyleigh was still perplexing because her left lung was STILL collapsed. A bronchoscopy was in order. Normally they would do this in the OR but because of Ky’s recent history they decided it was best to keep her in the ICU room. The results of the bronchoscopy led to us nicknaming her 5% Kyleigh. Kyleigh has a condition that is commonly known as a Tracheal Bronchus (Bronchus Suey)- also known as PIG LUNGS. She has the same structures in her lungs as PIGS which is only found in 5% of humans. The airway team in Cincy had everyone and their brother piled into our ICU room viewing the films and scopes because this is something that they may not see again for another year or two! HAH! That’s my girl. Also interesting to note that on the xrays from this date, Kyleigh only has 4 ring clips holding her chest together. When Dr. Eghtesady originally did the first surgery he had placed 5… nice! I just thought it was interesting that we are one short now… LOL.
After the results of the bronch we realized that her intuabtion had been placed down to far and due to her irregular structure, it was covering a part of the pathway to the lungs. Once they pulled the tube back a bit her lungs reinflated and all was well. Except for the fact that no matter what they did Kyleigh continually fought the intubation. Finally they sedated and paralyzed her completely. The docs said they hated to do it but she needed to REST for a while. We agreed. So we did. She rested in her drug induced coma and after another week we were able to bring her out and she was successfully extubated. Two days later we transferred to “the floor” and a day after that we were home… PICC line, IV antibiotics and all.. we were home. I think that the staff was in a rush to get us home. Whether it was because they were sick of us or because they knew we wanted to go home SO badly… discharge day was truly amazing. So many things had to fall into place and the discharge coordinator of A6 Central did the most amazing job coordinating everything that I was truly touched!
4 weeks we spent in the CICU in Cincinnati. In those 4 weeks we “grew up” as parents. We entered that hospital as scared kids with their own kid. We left knowing that we could handle anything. We will never be able to thank the staff at Cincy CICU enough. They are truly family to us!
Because we got to know the staff so well they invited us to participate in the CICU Family Centered Care board. We were honored to be able to share our experiences to better the “hospital life” of every family who spends time in the CICU and A6C. Once a month we drive back to Cincy and walk the hallways that we walked for a solid month on our way to the Heart Center. Its always bittersweet to realize how far she has come!
After her open heart surgery she was sent home with a central line, antibiotics and all was well. Ky began to grow like a weed.
PSARP Surgery
In August 2007 she had her Posterior Saggital AnoRectal Plasty (surgery to create her anus) and our dear Dr. Joe spent a month getting the correct medical license in the state of Ohio to be in the OR with Ky for this surgery in Cincy. It was a relatively uneventful 6 hour surgery and we spent a short 5 days in the hospital for that one. Although this surgery showed us early indications of her kidney issues we really had no problems and were home by the end of the week just like Dr. Levitt promised! Kyleigh did great and five days later we returned home with a new butt! The only complications that came out of this surgery was early indications that something was funky with her kidneys. Her creatinine went crazy and the Nephrology team was called in. Before they could assess and get a diagnosis her levels went back to normal. If only we had know about “the screw” the next few months of our lives would have been incrementally easier… sigh.
By October we were hoping to move forward with her MRI and Tethered Cord surgery. At 8 weeks she was diagnosed with Tethered Cord and we were advised to have it de-tethered as soon as possible. We had to putt off the cord surgery … life over limb truly was our motto for the first two years. In hindsight that was not the smartest decision we ever made but no one really laid it all out to us. This simple MRI, would turn into an ordeal… rest assured there is very little with Ky that is ever NOT a big deal!
Kyleigh was supposed to have a simple MRI to check the status of her spinal cord and further evaluate it for surgery. Late in September I went to wake Kyleigh up one morning and found that she was lying flat on her back in her bed staring blankly. I quickly realized that she was blue and unresponsive and I yanked her out of bed and started beating her on the back. I feared that it was her heart and the only thing I could think was “If she is screaming she is circulating” I grabbed her from her bed and started beating her on the back to try and get her to cry. She finally did but her color was off for a long while afterward. Being a heart mom you learn to watch things like rate of respiration, circulation etc. I immediately took her to the cardiologist who promptly said it was NOT her heart. His thought was that is was probably Neurological. We went straight from the cardiologist to our Pediatrician Megan’s (Dr. Megan Poole) office she agreed that we needed a neurological exam, EEG, and MRI / CT scan NOW. So she scheduled them with our delivering hospital, Central Baptist, as it would be MONTHS before we could an appointment at our children’s hospital. The day before her MRI was scheduled at CB they called to tell me that the MRI was BROKEN and that it would be another couple of WEEKS before they could fit her in. That about sent me over the edge and I called Megan to tell her. We were able to get Ky scheduled at a local diagnostic center at the end of the week. Our experience there was rather interesting. They could only use the sedation – Chloral hydrate. Well, Kyleigh laughed at even the MAX dose of and we left without an MRI. I was so upset and had no idea HOW we were going to be able to get these tests done. I did what I always do and blogged about it. This was on a Thursday evening. On Friday morning, through no small slight of fate someone important (take a wild guess who…) was reading our blog and managed to get Kyleigh an appointment on MONDAY for an MRI.
Monday’s MRI came and we knew that she would need HEAVY sedation because of our experience in the past. We arrived to the MRI, got an IV in, Sedated her and got ready to put her into the MRI. We left to get something to eat and to pass the time as the MRI was going to be 2-3 hours. Less than 5 minutes later they paged us and my heart skipped a beat. There was some kind of METAL on her. DUH!!! The bread tie like closure of her colostomy bag had METAL! We had not even thought of that. I apologized for being so SLOW to think of that and we again left to go to the cafeteria. This time is was 15 minutes before they paged and I AGAIN RAN to the MRI. No… that was NOT it. There was something METAL inside my child. We went through her records and trying to think if she had any implants or clips or clamps from surgeries etc. We called Joe, who was in the OR, to ask if he could think of anything… I probably should apologize because I have given Joe my fair share of crap… on this particular day I believe the first words out of my mouth when talking to him on the phone were “What did you leave in my kid??” It was directly in the vicinity of the colostomy. He of course said “NOTHING”… “Get an XRAY.. maybe she ate something”… I thought… great my kid who chokes on mac & cheese has managed to ingest something METAL! Surely enough there it was…. a 14 mm philips head screw was lodged in her distal bowel. I of course had to take the x-ray proof to show to joe… so we hauled ourselves up to KCH to show off our “trophy”.. hey we had to get something decent out of that day as it was a waste for an MRI. As funny as it WASN’T … it really WAS! I mean really who does that? Because it was in her Distal bowel we assumed that is had only been there for MAYBE a week or two and was moving out. Mistake #1… never ASS U ME anything with Ky. A week later she passed A screw. It was teeny tiny and I thought… man that does NOT look like the screw that was on the x-ray… but really what are the chances that she ate TWO screws? About two days later I pulled up her past x-rays to compare Ross’s to hers checking for constipation and realized that the same 14mm had been in the EXACT same spot back in AUGUST… which would make it 80+ days prior. Yet another night with a 9 pm phone call to Joe… telling him that the screw had been in the EXACT same spot since August (or before)… it was NOT going anywhere. The screw had to come out. Joe was not enthused about having a surgery to get the screw out and neither were we. So… with a combination of flouroscopy, balloon catheter, and hemostats we were able to inflate the balloon and drag the screw down far enough to use the hemostats to pull it out. A pretty horrible and a bit off label but it saved Ky from another surgery!
We sought the opinion of Dr. David Frim in Chicago because throughout my research on Ky’s “issues” I had come to believe that she had a Chiari malformation. The MRI proved I was right. TC and Chiari. Ultimately we did not feel that Dr. Frim was “the doctor” for us and returned home with the weight of her new diagnosis. With her already have showing symptoms of both Chiari and Tethered Cord we knew our time was ticking to find a surgeon. The stress and pressure of that was unbearable. If one of the “the best” was not it… who on earth would be? I was crushed. I thought that Dr. Frim was the Wizard and that as soon as we got to Oz things would be okay. Much like Dorothy I realized “there’s no place like home” and found a great Neurosurgeon right here at KCH, Dr. Bob Owen.
We returned home defeated and at our wits end. Wanting to move forward and help Ky feel better our journey returned us to where it began… Dr. Joe and UK. Are you starting to notice a pattern here? Yes… Joe has managed to be around for every major decision about Kyleigh’s health and MOST of her surgeries. I felt like I was spinning my wheels and flinging mud everywhere and was getting nowhere fast. That feeling of helplessness that had overcome me in the beginning of her diagnosis in utero was starting to creep back to overtake me yet I refused. I called Joe and told him we had no reason to wait on the colostomy closure and we needed to move forward now. I could not allow everything else to stall our plan to get her “normal”. I needed her FIXED now more than ever. Continuing to find issues I wanted to know that she could be FIXED. I still didn’t understand that words like “normal” and “fixed” are relative terms. I was about to find out.
The week before Christmas 2007 Kyleigh had her colostomy closed and that began the newest leg of our journey. We were in the hospital from Dec. 19-24 and when we were released I KNEW that something was wrong. Its just one of those things. I think Joe could tell that I “knew” because he emailed to check in with us before we could even GET home and then several times on Christmas day. This was the trip that confirm what an unbelievable gem we have found in him. Beyond being a Doctor I know that he has the “Kyleigh” sense. On some level this man connects with my daughter in a way that very few others do. He KNEW… like we KNEW.. and that is a special and very valuable thing.
Several times I was scared that we would end up back in the hospital because things were NOT right… but Troy insisted that we enjoy Christmas at home. I let it slide until a week later when on New Year’s day I knew… this was going from bad to worse. So I again called Joe. He said to bring her for fluids but he suspected that she was just a little dehydrated. She was but the interesting thing is that her transverse colon was largely dialated. That earned her a one way ticket to admission. The next day she was hydrated and the swelling in her colon was receding so in spite of my “feeling” we went home again. Less than 24 hours later I again called Joe and told him that she was vomiting, dehydrated and NOT RIGHT. He said we could stay at home and meet him in the AM or come NOW… but either way we had to come in. At 10:30 pm on a Friday night I decided I need a some sleep before we headed into another hospital marathon. This time I was warned that this was for the long haul! Joe made me promise that I would bring her in immediately and call his cell if she puked again. She did… at 2 am but there was NO WAY I was waking him up at 2 am to tell him that she had puked. I cleaned her up and put her in my bed to make sure I would hear her if she was aspirating. I texted Joe hoping that he would sleep through and find the message in the morning. That tactic failed miserably as I was startled awake by the ringing of my cell phone at 4 am only to be followed by an huffy Joe who demanded that I get to the hospital NOW. I explained that she had not puked in a few hours and that I needed to pack, clean etc. I think his exact words were “Well get your butt up and do it now… and be at the hospital at 7.” He said he would meet us there no later than 7 am. To my credit.. Joe is RARELY on time. He told me to call him whenever we were leaving the house. When I called (finally) at 8 am Susan (his beautiful wife) answered and relayed message to him in th shower…. I think he was mad but I had done what I thought was best for all parties.
She was SO badly dehydrated that we were barely able to get an IV in and yet again the colon was dilated. That began a 17 day journey that ended us with more questions than answers and ultimately we opted to have a g-tube placed because Ky had lost over 3 lb in a few weeks. With that weight loss it meant that she had gained absolutely NO weight in one year. In order to be able to keep her hydrated while we were figuring out what was going on we thought the tube was the best answer. This is a decision that we will never regret. It has been the single best decision we have ever made for her.
On January 17, 2008 Kyleigh made yet another journey to the OR with Joe. He, yet again, did a beautiful surgery and Ky came out of sedation well… sleepy but did not seem in pain. Not an hour after we arrived back to our room it began. I instantly felt sick because I knew that look in her eyes. I knew the way her body was rigid and thrashing. I knew that while she was there; she was not present. She was in PAIN… not unlike something we had seen before but the day that we stood in the CICU and held her down I VOWED and made a promise to her that we would not do it again. I kept asking the nurse to bring MORE pain meds and finally she told me that she had maxed out… but I know my kid… she was STILL hurting. So I asked the nurse to page Joe because this had to stop. I admit that I was very uptight and probably snipped at the nurse. I am sorry about that, but when you are stressed out like that you cannot help it. I would have been willing to do anything including buy narcotics off the street to keep my child out of pain at that point. Before I could get back in my room the nurse was following saying how she could not page Joe because he was not on call and I was really about to get pissed off when out of the blue appeared in the door Joe. I don’t know what it is, but he seems to have this 6th sense. Like he KNEW that something was going on. He could SEE that Ky was bad off . She was desatting because she was in such pain. First came the versed to see if she was just upset… no. Then more morphine… no. Then tylenol… LOL yeah right. Then we decided that we had to do SOMETHING or else she was going to end up in the PICU. After 4 meds were down and no sign of improving Joe told me that he HAD to put her on some supplemental oxygen… nasal cannula…yeah right she was not about to leave that on. So Joe stood beside her bed while she laid there screaming and pumped oxygen up her nose… at one point I believe he was ready to bag her.
Then, we made a decision that no parent should ever have to make. Once again we had to choose life over limb. Toradol is a great pain drug for Ky, but it is BAD for the kidneys. This day we decided that we would get her out of pain first and worry about Kidneys later. Considering the fact that we KNOW that her kidneys are having issues this was huge for us to decide. With the additional Toradol and then Benadryl (she was now ITCHING from the large doses of morphine) on board she finally quieted down and was able to rest and heal. Its during times like these that you begin to learn what people are made of. Do they crack and crumble? Do they cry or fall apart? You learn that the medical professionals around you are doing more than just a JOB. On days like these, your doctors become family, and join you in making decisions for your child. On this day Dr. Joe stood beside my daughter’s bed for 3 and a half hours and he watched her. He held the o2 to try and get her sats back up. He stood there for hours and I know good and well that he had clinic or something else to attend to but her was not leaving her until he got her out of pain. Most of all he listened. Theoretically she should NOT have been in pain.. but she was. Theoretically, Kyleigh should not be a lot of things, like ALIVE, but she is. Joe listened and he ACTED in a caring and most compassionate way. Yet another instance of him going out of his way to care for my daughter. I just thank God that is was Joe with us that day. There are, dare I say, NO other doctors ANYWHERE who understand that Kyleigh “doesn’t read textbooks”.
After the mic-key g-tube she took off like a weed again… in 6 mo she gained 6 lb and grew 5 inches! Success… and then in true Ky fashion we hit rock bottom… vomiting non stop, weight fluctuating, random fevers, pains, major butt burns and rashes… I just didn’t buy that NOTHING was wrong…
In the middle of all the MRI craziness… we started to notice little things that made me believe that she may be having bladder spasms. We went to see a Urologist in Cincy and found that not only was she having bladder spasms but she had a completely neurogenic bladder, which would require cathing for life, had Grade 3 Kidney reflux in her left kidney and a duplication anomaly of the emptying system and Y ureter. Her bladder pressure were off the charts (4 times the amount that causes kidney damage) and her capacities were double the normal amount. This was a problem. We began cathing every 3 hours (Q3 in the medical world) and began prophylactic antibiotics for the kidneys. All in hopes that we could “save her kidneys”… who knew…. obviously not us… again.
November came with a trip to the Urologist. Suspected UTI’s and things that were not blatantly awful but just didn’t FEEL right to me. With Ky’s history of Spinal Cord issues and Anorectal Malformation we thought it wise to seek the opinion of a Urologist, Dr. Shumyle Alam. We had no idea that what we were about to learn would be the most drastic life changing diagnosis yet. How could that be? We had been through open heart surgeries, no anus and spinal cord issues… what could possibly be worse? After a series of tests, VCUG, Urodynamics, Renal Ultrasounds and panels…. Kyleigh had Grade 3 Reflux in her left kidney, she also has a Congenital Duplication Anamoly on the Right side with a completely duplicated upper and lower lobe, emptying system, and Y ureter. Making matters even worse she overproduces urine, her bladder capacity is about double what it should be, and is pretty rigid. Her pressures are off the charts (in the 160’s… to explain how high that is… at a pressure of 20 one feels the need to urinate… at 40 you MUST urinate and can start causing kidney damage by refluxing… Ky’s pressures are 4X the “kidney damage” level… nice eh?) Her detrussor contractions are almost constant which means that she had been in pain for quite some time with bladder spasms. The only way to make things any better for her is cathing. There is about a 98% chance that Kyleigh will be completely incontinent as her bladder does not receive the neurological signals to empty. We cath Kyleigh every 3 hours to “save her kidneys” and many days uttering that to ourselves is the only thing that gets us through!
Tethered Cord Surgery…
At 3 months we had Ky’s MRI which proved that she did indeed have a fatty filum and it was thick enough that the original neurosurgeon recommended that she have the de-tether surgery ASAP and absolutely no later than 18 mo. We had hoped to meet that deadline but it just didn’t work that way. We knew that we needed to go ahead with the TC surgery… she was not talking, having trouble walking.. starting show the tell tale sign of Tethered Cord Syndrome.
March 18, 2008 – Dr. Bob Owen at Kentucky Children’s Hospital performed Kyleigh’s spinal cord surgery. It was yet again an eventful post op experience managing Ky’s pain. This time we did not have Joe to blanket her with the meds she needed. Immediately coming out of surgery she was in enormous pain. She was thrashing around and consumed more morphine that was probably “safe” for a child her size. 3 hours in the PACU (recovery)… brought visits from her amazing anesthesiologist… many times, a lost IV, her neurosurgeon, and I found out later… calls to Joe’s OR to consult him on how to handle her pain. We finally were able to get her calmed down enough that she was not hysterical but she was definitely still in pain. Troy burrito wrapped her and held her for several hours so that she could rest. By this time Dr. Reddy had realized that the last pain incident was not isolated.
They came to transport her and we were afraid to put her down in the bed so troy climbed into the bed and rode to the PICU “IN” the baby bed. It was interesting to say the least. About an hour after we arrived in PICU Joe appeared in the doorway of our room to check on us. I happened to be putting a foley cath in her at the moment… so it really was not a good time. I think I might have snipped at him but it had been almost 7 hours since my child peed and that was unacceptable. Notice I said “I” was putting the foley in. Dr. Owen had thought Ky would not need a foley for the “short surgery”… he was wrong. Sorry Bob… love ya but you sucked eggs on that one! After finally getting Ky’s pain under control, we were out of the PICU, into a normal room and home in 3 days flat. Not bad for Neurosurgery!
Not bad at all if I had not been totally paranoid of a CSF leak. When Ky got a huge egg on her back it was back to the hospital we went to consult with Dr. Owen about the leak. He said as long as it did not come through the skin she was fine. God had our backs and we finished recovering at HOME!
Through it all, Kyleigh took off walking, talking, eating. Balance issues subsided, pain subsided and she enjoyed the first few months of summer. I kept pushing the GI issues. I just know when something is wrong with Ky and we found that she was once again refluxing. We are still working on that but as of TODAY we have an explanation for the butt blisters… Ky may have a rare skin disorder called Pemphigus which causes her to blister. We think it may have been induced by extended use of Captopril (for her heart) and the symptoms brought on by triggers of allergy for food or to the ampicillian that she was given for he heart prophylaxis.
The summer brought a motility specialist, Upper Endoscopy which revealed no Eosinophilic disorders, Impedence probe which showed moderate to severe Reflux and still left us with many questions. Allergy testing showed that Kyleigh is allergic to absolutely NOTHING. This was quite the shock seeing as how EVERYONE in our family has major allergies. It was yet another tangible miracle and we thank God for that.
The summer of 2008 continued with more Urology testing and studies. The end of July brought on an 8 week bladder and kidney infection which seemed to morph each time we treated it with a different drug. She was hospitalized here in Lexington and then released to Cincinnati. She had TWO Cystocopies which at first showed a very grim picture of her bladder status. The second- just two short months later- looked drastically different. During this admission we also discovered that Kyleigh’s kidneys had been gravely affected by her Urological issues. Our mission to SAVE THE KIDNEYS was not working. Her right kidney was functioning at only 30% and her left at 70%. Total she still has 100% combined which is all we can ask for but we live with those kidney knowing that at any time they could turn the other way and we could end up with a very sick child on our hands.
Due to her kidney status she was having labs done every week or two for a period and trying to STICK Kyleigh is like trying to take blood from a steer… not good. We attempted to put in a PICC line to make draws easier. She had had a PICC before and it was fabulous. 3 hours into a 30 minute procedure the PICC was not to be had. We made the decision to go for a Broviac. 6.5 total hours in the OR Joe again stepped in to save us and gave her a beautiful line.
One month later, in October, our family had undergone a huge upset. It was the most horrible month of my life (worse possibly than the CICU month) and to make matters worse I accidentally CUT the central line. We took a ride in the ambulance to KCH and were able to patch the line but it only lasted a week. Ultimately Joe decided it was time for the line to go. I was completely torn up. I had fought SO hard for that line and watching it go was like watching everything I had worked for be thrown away. It was an easy surgery and we went home the same day.
Since those horrible weeks leading up to the Broviac removal, Kyleigh miraculously and unexplainedly took a turn for the better. She had one bout with dehydration in January but we were able to hydrate her at home and avoid admission.
In February2009, a simple ear infection led to an adventure that demonstrates why we always have to be on guard with Kyleigh. She started having some respiratory crud. I gave it a few days because it was the weekend. By the time I called on Monday to get an appointment for her to go in they were full and said I would have to go to the after hours clinic. We ended up not seeing our main pediatrician but someone else. He prescribed Omnicef. In under three days the medication all but shut down her intestines. Blood coming from places it NEVER should (especially in a kid with a man made hiney hole!) Even a little thing like an ear infection can be a life altering thing for Ky.
At the beginning of May we were “released” from Cardiac care. Kyleigh was declared to be on Maintenance after her Echo by Dr. Bricker. Not ONLY is the mitral valve no longer leaking, but the VSD has CLOSED ITSELF! This is a huge answer to prayer as it could have required an additional surgery on down the road! This may mean that Ky will not even NEED a revision of her heart surgery!!!!!!!!!!!!!
The third week of May 2009 brought a semi-annual visit to Urology and Dr. Alam. Now… our journey with Alam has been, shall we say, eventful. Kyleigh’s urology status went from- fine to devastating in a matter of a week. Then it went from BAD to WORSE in the middle of last summer. Kyleigh was put through the battery of testing… VCUG, Renal Ultrasound, Labs, Formal Urodynamics, etc. The great news is that her bladder is 100 times better than it was this time last year. Her bladder went from being kidney bean shaped to nearly normal. She still is neurogenic but her pressures, which were dangerously high a year ago, have been cut to less than 1/3. Always the silver lining; there is still Grade 3 Reflux in her LEFT kidney (the good kidney) which will almost certainly require a ureter re-implantation. BUT…. Alam has said he is taking the idea of a bladder augmentation, off the table for now. That is a HUGE victory. As of now we are doing everything we can but we really have nothing else to add to the arsenal. We watch and wait now and pray for the kidneys. Save the kidneys, save the world!
Our new “normal”…..
Each day is a new adventure. Each day is a battle to get Kyleigh to consume and absorb enough calories to grow. We have been battling this issue since the day she was born. Since her g-tube placement we have been able to force her to consume calories and her body has responded well. She has gained 6 lb in 6 mo and grown nearly 5 inches. She no longer looks overly thin or SICK. But the battle rages on. The smallest thing like an antibiotic sends her intestines into a veritable shutdown. GERD and major vomiting issues make Ky’s feeding tumultuous. We truly hope that someday her system will be able to thrive on its own without needing the tube but for now we are resolved. Its ok. As long as she is doing well then we are ok with this.
Kyleigh is cathed Q4 (every 4 hours) to relieve the pressure in her bladder. She has a functional capacity that is through the roof and her bladder is completely neurogenic. Her chances of continence are rather slim and as soon as possible we will consider a Mitrofanoff procedure to place a permanent catheter.
With her being on liquid feeds, her bowel continence chances cannot really be assessed right now. Liquid in=Liquid out, but that is what we are planning to work on this summer. Our goal is to have her consuming the majority of her calories by mouth by the end of the summer in an attempt to see if it will even be possible to potty train her for stool. (We are resolved that without a miracle, continence of urine will not happen for her.) So its a lofty goal for the summer but we know that with God’s help … nothing is impossible!!!
Even with as much as a history as we already have, her journey is only just beginning. The one thing I know about my daughter is that she is a miracle in 30 inch form. God has blessed us with her life and health. He has given us grace, patience and strength to make it through the past three years. He has blessed us with people. Amazing, wonderful, kind and compassionate friends, doctors, nurses etc. He has placed his hand so STRONGLY on her life that I have no doubt that she was sent here to change the world. I know that God has big plans for this baby girl, that for all intensive purposes, should not be alive. There is no logical reason how she survived her heart surgeries. There is no medical explanation as to why she is suddenly well now.
Me… I don’t need a REASON. I know why. I have seen a miracle and in meeting my daughter… you have too.
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