Hunter was delivered by emergency c-section at Schneck Memorial Hospital at 24 weeks gestation. Hunter was immediately transferred to Riley Childrens Hospital without me even being able to lay an eye on him or hold him. Everything happened so fast that I hadn’t really realized what had just took place. I did not even have a name picked out muchless clothes and necessaties ready! What turned out to be very long days, weeks, and months seemed like years. Hunter fought for every breath, every ounce, and any strength he could gain. With many complications from day to day Hunter kept fighting for his life. Hunter faced several surgeries through the 9 month stay at Riley Childrens Hospital. (Pyloric stenosis, nissen, hernia, cental lines, g-tube, saliva duct removal) Hunter was so premature that it seemed like he almost never was going to graduate out of the incubator. How I described Hunter looked like was “a newborn baby bird.” So Fragile! We were not even allowed to stick our finger inside to touch him. His skin was so thin that you could see every little vein pumping through his tiny body. His fingers were the size of toothpicks. Hunters lungs were not fully developed therefore he was diagnosed with having BPD. Hunter also had a NG tube placed thru his nose to stomach to be able to get feedings. Hunter was never able to get the sucking method down to be able to take a bottle like a normal infant. Everyday for us was like kids in a candy store running into the NICU unit to get to take part in weighing Hunter. Even though we were aloud to take part in weighing him we were not aloud to touch him. A small square piece of linen was placed underneath him and hooked to a chain that was dropped thru the incubator. Reminded me so much of the stork delivering a baby. Every ounce he gained was a blessing for that day. Hunter had a grade 4 brain bleed due to the prematurity that was monitored frequently. We were told one whole side of his brain was gone. When the neonatologist went in to details with us about this he informed us that Hunter’s grey matters were gone. Hunter was diagnosed with Cerebral Palsy. The neonatolgist words to us were, “I can not paint you a pretty picture on what Hunter’s life will be like.” He was referring to that Hunter would never be able to sit, crawl, stand, walk, NOTHING! Definetly not words anyone wants to hear, but we were not giving up. Hunter had actually fought for his life every single day he was there. Always seemed we were running against brick walls from having pnuemonia numerous times, oxygen level dropping, severe apnea, blood clots, surgery after surgery, weight loss, and even dying in front of our own eyes four times one night. The list goes on and on….Hunter was finally able to go home after 8 long months. But that didn’t come without wire and tubes. Hunter wasnt able to get rid of the heart monitor or sleep apnea monitor til he was two years old. Hunter was then weened off one liter of oxygen approximately six months later.
Thru the years Hunter has faced many more negatives such as surgeries (g-tube, tonsilectomy and adnoid removal, tubes, achilles tendon realeases in both legs, and reconstruction of both hips and pelvis) and many more diagnosis (epilespsy, neutropenia, Vitamin D and K defiency, asthma,submucus cleft palate, aspiration, tethered spine, boulging discs, autism, anxiety, OCD, acid reflux, gout, Crohn’s disease). But yet Hunter has gained many positves as well. Hunter had actually started doing the things that we were told he would never do. Hunter had proved many wrong. From rolling to crawling to even standing and walking with assistance. Hunter actually started saying a few words that many to this day can understand. Hunter is a very smart, intelligent, young boy that understands almost everything you say and ask of and to him. Many do underestimate him and his ability. Hunter brings the a smile to everyones face and a inspiration to many. He is a miracle and a blessing to this family, and we can not imagine life without him.
February of 2012, Hunter woke up one morning and could not bare any weight on his knees nor legs. Hunter was unable to crawl or walk. He cried in pain holding to his thighs continuously. After rushing him to the pediatrician immediately. We find out a few hours later that Hunter had dislocated hips. The pain was originated in the hip shooting down his legs. In which two days later resulted in an appointment with Orthopedic Specialist/Surgeon at Peyton Manning Childrens Hospital. After having a MRI and many xrays done. Hunter was suffering from his right leg being dislocated 75% out of hip socket and right leg 25% out of hip socket. As parents we were given three options but one option being totally out of the picture. That being Hunter having total hip replacements done. Hunter was not a canidate at this time due to him only being 15yrs old and still growing. The next two options being one do nothing and Hunter would live in his wheelchair the rest of his life and on pain medications, or reconstructive surgery and a chance of walking again. Of course the parents we are we was not going to have our Hunter live in pain the rest of his life and be wheelchair bound. Hunter had came too far for the result to be that. So we chose reconstructive surgery and scheduled it for June 4, 2012.
After four long months of Hunter not being able to walk and being in pain June 4th finally arrived. This surgery was a very major surgery lasting 8 hours long. (Orthopedic only schedules 2 a year) Hunter had alot of difficulty during surgery resulting in the surgeon having to make many changes that was originally planned. Hunter had lost a large amounts of blood causing many transfusions. Along with a cadevour bone being used in his right hip. Both of his femurs had to be broken for this procedure to be done. Along with his pelvic bone socket had to be reconstructed as well. After surgery Hunter had caught pnuemonia along with infections in his hips and required more transfusions and hard caore antibiotics. Hunter had to have one surgery site being drained four different times. In a months time Hunter was taken back to surgery five different times. With the last time resulting in the cadevour bone having to be removed due to Hunter’s body was rejecting it.
Hunter started physical therapy three days a week in October 2012. Hunter was progressing slowly but was gaining strength with each visit. Hunter had actually taken some steps with his reverse walker that left us speechless. A few short weeks later Hunter had taken a large turn for the worse. Leaving us, the therapist, and the surgeon in a state of confusion for three months. In that three months of confusion everything was tried to make him better but nothing would work. An MRI was scheduled for his brain, neck, spine, and hips. Also, while Hunter was still under anesthetic he was taken to surgery to have his hips injected with numbing medicine, steroid, and Botox.
The evening of this procedure after arriving home Hunter awoke in UNBELIEVEABLE PAIN! Tears of pain and fear poured down Hunter’s face as he was unable to move his right leg. Hunter would glance down at his right leg and it would not move. After immediately calling the surgeon and pain medicines called in three hours later the pain was undercontrol and bearable thru the nite. The next day we arrived at surgeons only to find out that the fluid that had been drawn off his hip had came back showing a numerous amount of uric acid crystals which was Gout. Suregeon and other speciaists of Hunter could not express enough how rare this was not only in the hip but for a child to have Gout. Medications were given to treat this and seemed to helping to a degree. Only to find that they were stopped two months later as a precaution since Hunter started bleeding rectally and needed to be investigated. Yes pain since then has been unbearable for Hunter. As it takes two of us to lift Hunter to be moved anywhere. This includes to be changed, in and out of wheelchair for transportation, baths, bed, etc… With Hunter now 5’4 and weighing 120 pounds, all dead weight, it takes one under his arms and one under his legs to move. Since the medication of gout has been stopped Hunter recently went for a colonoscopy. Showing he has a auto immune defiency causing ulcerative proctitis and possibly Crohn’s Disease. We are awaitng for biopsies and lab work to come back to see what the prognosis is. In the meantime Hunter is still bleeding large amounts rectally and pain in his hips and legs is still progressing. Hunter is suffering from extreme atrophy in his legs. Everyday is a waiting game in our household. Even through it all Hunter still beams that thousand-watt smile of his. I don’t see how he does it when some days all I want to do is cry, but he pulls me through. I believe God sent us on this journey for a reason and that I am Hunter’s mom for a reason.
Monica Darlage
