113 Days in Pictures

16 Weeks and a Day 

Neonatal Intensive Care Unit (NICU)

RUSH Presbyrterian- St. Luke's

Chicago, IL

May 23, 1999 to September 13, 1999

Below represents Kellisa's stay in the NICU at RUSH for 113 days. There are many stories to be written about these days and what we went through that are still etched in my memory as if it was yesterday, but those are for another time. This series of pictures tell a story of unbelievable determination and will to survive by Kellisa...our little Warrior!

The second picture (the first picture and story might be shared at a later date, but no promises) we ever took of Kellisa (5.24.99)

Kangaroo Therapy

Kangaroo Therapy

7.6.99

Bath Time (7.6.99)

Scar from PDA Ligation Surgery (7.7.99)

7.19.99

Kangaroo Therapy (7.25.99)

Surgical Dressings after 1st Shunt Insertion (8.2.99)

Kellisa saying "OK" with her Right Hand (8.2.99)

EEG to Check for Seizure Activity (8.6.99)

Stitches from Shunt Surgery (8.8.99)

Kellisa in an Open Bed w/Nasal Cannula (8.10.99)

This was a HUGE Milestone for Kellisa!

Kellisa wearing her First Outfit (Doll Clothes)

(8.15.13)

Another EEG (8.16.99)

8.18.99

8.18.99

With Mom and NO Tape on her Face

Sticking her Tongue Out (8.26.99)

Bath Time (8.28.99)

Bath Time (8.28.99)

Drying Off (8.28.99)

8.30.99

Kellisa's First Bottle Feeding (9.5.99)

Another HUGE Milestone!

Kellisa drank 37cc (9.5.99)

Mom Burping Kellisa (9.9.99)

9.12.99

We slept in these Chairs for 4 Months

Picture taken after our Last Night

(9.13.99)

Kellisa's Last Bed Space (9.13.99)

The moment the best doctors in Chicago never thought would happen, Kellisa was discharged on September 13, 1999. 

Arrival at Home:

Asleep in her own bed for the first time:

Nothing Special

Grand Island

August 2013

Page 2

Kellisa has been through 36 U.S. airports and I can assure you that Detroit’s airport is by far the most difficult to navigate through with a wheelchair and baggage. We arrived on time and headed towards baggage claim to get our checked baggage (which was quite a load since I had Kellisa’s Freedom Mobility Chair, travel wheelchair, luggage and all of our backpacking gear). Next, we headed for the rental car bus pick-up area. Leaving the baggage claim area, we struggled to fit on an elevator to go up one floor. A huge thank you to the gentleman, who had his own young family to navigate through the airport, for helping to hold the elevator door open as we boarded even though there wouldn’t be enough room for his family.

After the elevator ride, we made a few turns, walked across a skywalk, made a couple more turns and rode another elevator down to the same level we just left minutes before. Once we were back on ground level, we made a slight turn, squeezed through sliding glass doors and proceeded to the location of our rental car company’s bus pick-up area. We were probably less than a hundred yards from the baggage claim area, but it’s not connected and that’s why we had to take make so many turns and ride two elevators.

Our bus pulls up and Kellisa bends over with excited anticipation. Kellisa loves riding on a bus because it’s usually a bumpy, noisy ride. The bus that pulled up in front of us had a wheelchair lift which only increases the excitement. Kellisa did her usual curling her head between her knees as she giggled and struggled not to hyperventilate.

The bus driver was a friendly lady in her late 40’s to early 50’s that seemed genuinely happy to be at her job. While she was lifting a row of seats to make room for the wheelchair, she paid me the following compliments: “thank you for restoring my faith in men and fathers, there’s still hope”. I didn’t ask for details, but figured she had been burned at some point in her life.

The bus driver went out of her way to drop us off as close as possible to our SUV and helped with our small mountain of gear. As I thanked her and gave her a tip, she again thanked me for making her day and she told me how “special” Kellisa was. It made me feel good all the way around even though I always feel awkward when people think I’m doing something special.

I don’t do anything different for Kellisa because she can’t physically do things herself. We do what she likes; it just looks different because I have to be her arms, legs and back. Helping your daughter have fun is a father’s responsibility, it’s nothing special. I guess it’s an unexpected sight to some. It makes me sad and motivates me to spread Kellisa’s story that we never see other disabled kids in the outdoors, but I’m sure there are many “able bodied” kids that don’t get the chance either. We’d still be visiting Grand Island if she was a physically functioning 14 year old who loved outdoor adventures.

With the SUV loaded, I set the GPS to Ashland, OH and started our long drive.

Next Page: I Can't Drive 55

Previous Page: Flying to Detroit

PDA Ligation

Kellisa's first surgery: Patent Ductus Arteriosus Ligation

Rush Presbyterian- St. Luke's

Chicago, IL

Kellisa was born with Patent Ductus Arteriosus (PDA), a congenital disorder in the heart. PDA is common in premature babies with an undeveloped heart and lungs. Left untreated, it could eventually lead to congestive heart failure.

In a healthy birth, the ductus arteriosus closes shortly after birth, preventing irregular transmission of blood between the aorta and the pulmonary artery. The PDA closes as the baby breaths oxygen into the lungs which produces sufficient levels of brandykinin. Hypoxic preemies take in too little oxygen preventing sufficient brandykinin to be produced and the ductus arteriosus remains open (patent).

With a PDA, some of the oxygenated blood from the left side of the heart flows back into the lungs from the aorta to the pulmonary artery. This will lead to a shortness of breath and the lungs fill with additional fluid creating an increase in lung pressure. This increased pressure will make it difficult for the baby to inflate the lungs.

Kellisa already had underdeveloped lungs and was immediately placed on a respirator following her birth. A PDA is considered congestive heart failure. A course of indomethacin, a special form of ibuprofen, is the preferred method of treating a PDA in a preemie. Kellisa had two courses of indomethacin without success.

The last option for Kellisa was surgery. Cardiologists would go in through the Kellisa’s back to her heart and surgically close the arteriosus. This would be Kellisa’s first surgery. Kellisa was 3 ½ weeks old when she had the successful PDA ligation. Little did we know at the time that this would be the first of many surgeries.

This is the first picture we have showing Kellisa's scar from her PDA surgery, about two weeks after the surgery. 

Shunt Surgery

Christmas 2005- 9 days after her 10th shunt surgery

August 1999          V-P Shunt Placement at 1900 grams    
                              Rush Presbyterian- St. Lukes, Chicago, IL
September 1999   Shunt Replacement  
                              Rush Presbyterian- St. Lukes, Chicago, IL
October 1999        Shunt Replacement      
                              Rush Presbyterian- St. Lukes, Chicago, IL
May 2000              Shunt Replacement                              
                              Arnold Palmer Hospital, Orlando, FL
May 2001              Shunt Malfunction                    
                              Arnold Palmer Hospital, Orlando, FL
April 2003              Removed Infected Shunt                      
                              Arnold Palmer Hospital, Orlando, FL
April 2003              Placed Programmable Shunt                
                              Arnold Palmer Hospital, Orlando, FL
October 2005       Shunt Repair                                      
                              Wolfson's Children's Hospital, Jacksonville, FL
November 2005    Shunt Repair                                    
                              Wolfson's Children's Hospital, Jacksonville, FL
December 2005    Shunt Replacement- Non-programmable                            
                               Wolfson's Children's Hospital, Jacksonville, FL

Laser Eye Surgery

Retinopathy of Prematurity

Rush Presbyterian- St. Luke's

Chicago, IL

October 1999

All preterm babies are at risk for Retinopathy of Prematurity (ROP), with low birth weights being a second high risk factor. Kellisa was both and was diagnosed with ROP. The ophthalmologist was following Kellisa closely as her eyes developed.

Out of everything Kellisa went through in her first six months of life, her eye exams were by far the most brutal, both for her and her parents. Imagine 3-4 people struggling to hold down a sickly baby less than five pounds as she fought with everything she had as the doctor pried her eyes wide open as they bulged from their sockets. A device straight from a medieval torture device museum was used to lock the eyes in the open position. I still have nightmares of the banshee wails that came from her oxygen starved, underdeveloped lungs and there was nothing I could do but hold her down with all my strength.

Above: NOT Kellisa

My fatherly instinct was telling me to push (hit) the doctor and run out of the hospital with Kellisa every time she went through this exam. There’s only one reason why I never committed an assault and escaped with Kellisa. When Kellisa was first diagnosed with ROP, we were told that she would go blind if it progressed unchecked.  

The blood vessels in the eyes finish growing in the last few weeks before a full term birth. ROP is when the blood vessels grow in a disorganized way after a premature birth. In rare instances, the ROP can resolve itself. As this disorganized growth progresses, it will cause the retina to detach leading to blindness by 6 months.

ROP is defined with 5 stages. The first two stages do not lead to blindness. Stage 3 is when the blood vessels attempt to grow into an area without vessels. This will cause a buildup of oxygen and blood leading to detaching the retina. Stage 4 is when the retina starts to detach. Stage 5 is total retinal detachment which will cause substantial or total vision loss.

When Kellisa’s left eye reached stage 3 and her right eye entered stage 4, we were advised that laser surgery was the only choice for Kellisa. A laser is used to burn the ends of the blood vessels to stop their attempt at growth. Before Kellisa was 5 months old, we signed the parent consent forms for Kellisa’s 5^th surgery.

The surgery was a success as it stopped the ROP. Because Kellisa’s blood vessels never grew to the outer ends of her eyes, Kellisa doesn’t have any peripheral vision.

Stevie Wonder is probably the most famous person who suffers from ROP.

_____________________________________________________________

Eye Muscle Surgery

Wolfsons Children's Hospital

Jacksonville, FL

August 2002

Kellisa would have her second laser eye surgery to correct the alignment of her eyes. Her eyes had become crossed. We tried to fix the problem without surgery by patching her eyes; unfortunately this attempt did not work. Without surgery, one of Kellisa’s eyes would become dominant and the other eye would lose its ability to see as her brain would only use the best eye. The doctor would use the laser to adjust Kellisa's eye muscles so her eyes would be in alignment.

This would be Kellisa’s 8^th surgery and we don’t have any pictures to share. However, two images are forever burned in my darkest nightmares. The first is the blood tears that were flowing from Kellisa’s eyes when we first entered her post-op room. The second and worst is the expression on her face. She didn’t need to say a word; it was clear that she was asking her parents, “Why and how could you do this to me?”

Gastrostomy Tube (G- Tube)

Wolfson Children's Hospital

Jacksonville, FL

June 2003 - July 2003 - July 2011 - August 2011

Kellisa struggled with several issues that led to the placement of her first G-tube. Kellisa was having trouble drinking; liquids would just drool out of her mouth. Kellisa would get tired of chewing and couldn't process chewy or tough foods, so it was hard to get her to eat enough calories. Even with a steady diet of peanut butter cups and chocolate pudding (for liquid intake), Kellisa was failing to grow and gain weight, a combination commonly called- failure to thrive. She was 4 years old and stuck at 19 pounds.

It was a tough decision to agree to the G-tube surgery because it seemed so permanent and also admitting a failure. At the end of the day, we knew it was the right thing to do and it was time- time for Kellisa to start thriving.

Kellisa had the G-tube placed in June 2003 without any complications. It took a couple of days to get use to the new process, but it definitely made things easier, especially making sure Kellisa received her many prescriptions. The most important are her seizure medications and we would now know that they were completely dispensed because a G-tube connects directly to the inside of the stomach.

Summer school started for Kellisa a couple of weeks after the surgery. Because it was a shorter school day, Kellisa wouldn’t need a G-tube feeding at school. She would get one right before and one following her day at school..

One day, a school nurse took it upon herself to give Kellisa some water by G-tube. Unfortunately, the nurse was only familiar with G-tubes in the elderly and not children. We’ve been told that you need to pull on the G-tube to make sure it’s still attached when dealing with the elderly. With children, this is not necessary or even recommended. We would find this out the hard way. The nurse pulled on Kellisa’s G-tube and pulled it from her stomach. The inside part of the G-tube now emptied into her stomach cavity.

The nurse did not tell us and even denied “feeding” Kellisa. We would take Kellisa to the doctor and they tried to save the G-tube, but weren’t successful. Less than a month after Kellisa’s 11^th surgery, she needed her 12^th to replace the G-tube and connect it to her stomach.

Kellisa would suffer from granulation tissue after the second surgery. According to the free online Medical Dictionary, granulation tissue is defined as:

“The newly formed vascular tissue normally produced in healing of wounds of soft tissue, ultimately forming the cicatrix”.  

Here’s my definition: “tissue, sometimes blooding and/or oozing, growing out of Kellisa’s stomach around the plastic G-tube, causing irritation, itching and the need to stain treat every article of clothing that comes in contact with it”. This definition is based on years of dealing with granulation tissue.

The treatment is to have the granulation tissue burned off. We were going to the doctor on a weekly basis to have this procedure done. After several months, the doctor sent us home with the necessary supply of silver nitrate to burn the tissue ourselves. After continuing the treatment for several months at home, the granulation tissue finally stopped growing for good.

______________________________________________________________

Kellisa went through a growth spurt in early 2011 and her G-tube was being pushed in a downward position by her growing ribs. Basically, she was outgrowing her G-tube placement from 2003 and it needed to be relocated to a lower position. Kellisa’s third G-tube surgery (21^st overall) was performed in July 2011 without complications.

About a week after the surgery, the G-tube started to look like it was being sucked into Kellisa’s body. We went to the doctor and they reworked the placement a little and even made a custom support to fit between the outer button and Kellisa’s skin. A few weeks of trying to “nurse” the tube into a better position failed and a second surgery was performed in August 2011.

The same doctor has performed all four of Kellisa’s G-tube surgeries. In fact, her doctor helped pioneer the type of G-tube Kellisa uses and has probably performed more of these surgeries than anyone else. According to the doctor, it’s a one in a million to have to perform back to back G-tube surgeries. The surprised doctor couldn’t place odds of the double surgery happening twice to one person.

Of course, we are still treating granulation tissue more than two years after her last G-tube surgery. Again, 1 in a million has granulation tissue that lasts “years”.

I was never surprised by the odds because Kellisa is always the 1 in a million! I can’t wait for Kellisa to be old enough to buy lottery tickets.

G-tube with granulation tissue on September 1, 2013. Scar from the first G-tube site can be seen just above the new placement.

Bilateral VDRO and Removal

Wolfsons Children's Hospital

Jacksonville, FL

September 2003 - January 2005 - February 2006 - February 2011

Kellisa was a little beyond her 4^th birthday when she had her 13^th surgery. Heading into her first surgery on her hips, Kellisa already had seven brain (including two for an infected shunt), one heart, two eye and two G-Tube surgeries. The Bilateral VDRO surgery would be by far the worst of all her surgeries.

The surgery was on both her hips because they became dislocated from to her inability to stand and walk, due to her cerebral palsy. Kellisa couldn’t describe with words the pain she was living with leading up to the surgery and I can’t even imagine. And all the while she kept her cheerful personality.

Even though I watched nurses and anesthesiologists wheel Kellisa away for surgery twelve previous times, it’s never easy. If anything, it gets harder each time because you realize the risks more and since Kellisa knows what’s going on, her face expression breaks my heart as I let them take her.

During this surgery, the doctor cut both of Kellisa’s leg bones to fit back into the hip joint, inserted hardware to help keep the hips in place and while they had her open, injected Botox into the hamstrings and abductors to help with flexibility.

After shunt surgery, even though they drill a hole through her brain for a drainage pipe, Kellisa is usually back to herself within a couple of days. After this surgery, Kellisa would suffer for weeks with sharp pains and spasms that only increased the already high levels of pain. When we brought Kellisa home, she was on a significant dose of pain medication and it wasn’t enough. Without words, Kellisa’s constant moans and cries for help more than expressed her discomfort.

In addition, Kellisa was unable to get a good night of sleep. Kellisa would lay on a foam mattress in front of the television in the living room day and night. We would leave the television on all night for Kellisa, with Lisa and me taking turns sleeping and comforting Kellisa through the long nights. This was our routine for about four weeks before the pain started to reside.

Besides relieving Kellisa’s constant pain, another monumental blessing would emerge from this taxing surgery. Kellisa needed a rental wheelchair to elevate her legs. This chair also had wheels that Kellisa could wheel herself, a first for Kellisa. Until this time, we never pictured Kellisa wheeling herself, but she took to the wheels almost immediately. The wheelchair was too big for Kellisa and she could only reach one wheel at a time, but for the first time she was able to propel herself…and she loved it!

If you use only one wheel, you will just go in circles. Kellisa quickly learned this lesson and would lean her body from one extreme side to the other to keep her going where she wanted to go. Kellisa now had some independence. Shortly after returning the rental chair, Kellisa would be the proud owner of a new wheelchair that she could self propel. Our furniture and paint on the walls have never been the same since.

_____________________________________________________________

In January of 2005, the doctors removed (15^th surgery) the hardware from Kellisa's hips and injected Botox into her hamstrings and abductors. Again, the recovering process was repeated as above- four weeks of constant pain and suffering on the living room floor.

Because Kellisa still couldn’t stand and bear weight, her hips became dislocated again and the Bilateral VDRO surgery (19^th overall) was repeated in January 2006 with a similar recovery period as above.

Kellisa lived with the hardware until constant pain required their removal in February 2011, her 20^th surgery. The doctor also performed tenotomies on both legs which resulted in Kellisa needing double leg casts for six weeks.

A rare photo without a smile on Kellisa's face

The heavy casts made the six week recovery process even harder because it was almost impossible to move Kellisa, making everyday tasks extremely painful for Kellisa. To make matters worse for Kellisa, she was stuck in a recliner chair in front of the television for the entire six weeks because she was too big and the casts made it impossible to have her on the floor. And Kellisa got kicked while she was down by getting a significant bed sore just days before the casts were removed. We had to deal and treat this unpleasantry for several additional weeks.

6 weeks of hell for Kellisa and I can't tell you how many times we rearranged the pillows without much success to try and find a better position for Kellisa

Even though it’s been a couple of years, Kellisa still refuses to sit in the recliner and I moved it out of the living room to remove the constant reminder for Kellisa of those dreaded six weeks.

Relentless Defender

My plan was to write a story about Kellisa's 14th surgery, but events at Kellisa's school will bump that entry back a day or two. Kellisa is in an ESE classroom and it can be "challenging" with many different types of children and their individual needs. The school year started a few weeks ago and Kellisa's nurse reported that one of her classmates likes to pull hair. I've been worried that this kid would pull Kellisa's hair and hurt her. I know the classroom has 4-5 adults for less than 10 kids and it's the same teacher as last year who I completely trust, so my worries were stashed in the back of my mind as the first week passed.

The boy finally got around to pulling Kellisa's hair today and Kellisa impressively defended herself. I guess Kellisa started swinging her arms with wild abandon. The boy struggles to walk, so he had trouble getting away from Kellisa and Kellisa has freakishly long arms, so I can only imagine the sight of this now terrified boy trying to get away from the relentless defender.

By all accounts, I don't think I have to worry about Kellisa's hair getting pulled for the rest of this school year. I'm thinking all the sibling battles with Egypt in the living room and backseat of our cars has trained Kellisa for this occasion.

I'll go to bed very proud and filled with less worries tonight.

*** Flashback ***

It was Kellisa's first day of 1st grade back in August 2005 and a cute little boy who had been friends with Kellisa for several years already was getting in her face. I think he was just excited to see Kellisa after spending the summer apart. Kellisa was usually very affectionate with her friends, especially the boys, but for some reason, she wasn't feeling the love and pushed him away. He wasn't satisfied with her greeting and came back in close to Kellisa's face and she gave him another push. When he immediately returned, she punched him in the face and split his lip. 

Because there was blood, the school was forced to write it up as an incident and notify both parents. Fortunately, we knew the other family and they were OK with everything. Both kids apologized to each other and moved on to continue their friendship for many years after this isolated incident. I'm not sure if he ever got so close to Kellisa's face again. 

I remember being thankful Kellisa didn't go to a school where they would have called the police to have her arrested for assault. I was also very proud of my wheelchair bound daughter for defending her space.

Tonsillectomy & Adenoidectomy

Wolfsons Children's Hospital
Jacksonville, FL

August 2004

Almost 400,000 children have their tonsils and adenoids removed each year in the United States. In 2004, Kellisa would be included in that number. This would be Kellisa's 14th surgery.

Kellisa needed this surgery because her tonsils and adenoids were enlarged and were thought to be the cause of her sleep apnea- loud snoring and frequent stops in breathing while sleeping. Kellisa has swallowing difficulties related to her cerebral palsy, but it was hoped that having this surgery might improve her swallowing ability. Sadly, it didn't.

From: National Library of Medicine

Kellisa's tonsils and adenoids were removed by laser to also get the "roots" so they wouldn't be able to grow back. The recovery was normal, a couple of weeks of pain eased by chocolate pudding, ice cream etc. Most tonsillectomy and adenoidectomy stories would end here, but not Kellisa's. One of her tonsils grew back and is actually larger than it was originally. We've been told that this is impossible and every doctor who looks in her mouth asks about the giant red blob in her throat and they are always amazed when we tell them the story. Most say they've never seen anything like it, but it doesn't surprise me, that's how Kellisa rolls. Unfortunately, Kellisa still suffers from sleep apnea.

Photo Credit: Habib M’henni 

Rice Pudding

Delta's Sweet Rice Pudding

Breakfast

September 7, 2013

Review:

Packit Gourmet says it serves one, but Elk and I shared the pudding and I had trouble finishing my majority of the mixture. Surprisingly filling. The flavor was stronger and definitely sweeter than flavored oatmeal instant packages. It's more work than just adding water, but not much more. I can definitely see adding this to a backpacking food bag for breakfast or maybe even a rewarding dessert!

Rating: 4/5