Surgery #23

Sutter Health Roseville

December 2020

Lisa noticed Kellisa's left breast was swollen to 3-4 times its normal size one night while changing her shirt at bedtime. Since we help Kellisa get dressed and shower, this increase in size happened literally overnight. It was too late to do anything and ERs are too scary in the middle of a COVID-19 surge. Of course we were worried about breast cancer and I couldn't help but do some Internet searches. I found several logical explanations, I also found a rare type of beast cancer that seems to aggressively grow out of nowhere. Lisa called Kellisa's doctor first thing in the morning and Kellisa's awesome doctor saw her right away.

The doctor thought it was just fluid built up in the areas where breast milk would be stored. She was confident that a duct got pinched and closed the area. This made sense because Kellisa has a natural lean to her left side and never seems to get tired or uncomfortable in that position. In her wheelchair, her left chest area leans up against the metal arm and in bed when she props up on her left arm, her breast could become pinched between her bed and elbow.

I can't describe how relieved I was at the diagnosis and the cure was 10 days of antibiotics and warm compresses.

Several days went by and we didn't see any improvement. We talked to her doctor who became very concerned and ordered an ultrasound. I had to bring Egypt with to the ultrasound because Lisa was at work. I prepared Egypt to be left alone in the lobby area, but to my surprise, the ultrasound lady invited her back and Egypt gladly accepted.

My nerves and anxiety took a blow when the technician started asking about breast cancer in Kellisa's family. She didn't ask about pinched duct history, so while she left and we were waiting for the radiologist, I was preparing for the worst and wishing Egypt wasn't in the room with us. I wanted to control how she heard devastating news about her sister and wanted Lisa there, but there was nothing I could do but wait and deal with it.

Notice Egypt's hand getting ready to get too close to the ultrasound machine.

It seemed like hours before the radiologist entered. I was hoping for a smile or something to relieve my worry as she entered, but her face was like stone. Before she explained anything, she pulled up images on the screen. I forced myself not to look during the ultrasound. I learned many years ago to resist those temptations because I don't know what I'm looking at and it will always look bad when you are fearing the worst.

As the image came up, I could see several large black spots. I feared cancer and was waiting for the diagnosis. I was also trying to keep my composure for the benefit of both Kellisa and Egypt.

"See these black areas?" the radiologist asked.

"Yes," was my trembling response.

"It's fluid built up from a pinched duct." The diagnosis we wanted to hear!

I'm pretty sure she gave me the medical term, but I was too busy having 13 tons of bricks removed from my shoulders. I started to cry because the dreaded C word wasn't part of that sentence. My relief didn't last long.

"It's a significant amount and she needs emergency surgery."

What? 

We were sent home and told to wait for a call with instructions. The radiologist said it might be several days because the hospital is overloaded as they struggle with the COVID-19 surge.

Shortly after arriving home, Kellisa's doctor called and told us to go to the hospital and check-in through the main entrance. It was determined surgery was necessary as soon as possible. Besides the risk of many sick and potentially COVID positive patients in the ER, the wait just to be seen was hours long. Kellisa's awesome doctor pulled strings so Kellisa could avoid the ER and we were thankful.

Lisa rushed home from work to be with Kellisa. I had a small bag packed and 30 minutes later we were settling in a private room on the peds floor, far from the COVID-19 units. Kellisa and I had to wear masks when anyone else was in the room. It was a constant and steady flurry of activity, so the masks remained mostly on our faces. 

Kellisa loved all the attention, even if it was blood draws, blood pressure tests, IV starts, etc. This was around the 10th time Kellisa left the house since mid-March and was by far the closest she was to people not named, mom, dad, and Egypt. 

It wasn't until after a consultation by the surgeon that I realized how serious Kellisa's situation was inside her left breast area. Besides being filled with fluid, they were worried about truly nasty infections that were spreading to other parts of her body. The nurse checking her in noticed her left leg was red and warmer then her right. The surgeon told us they would take her to surgery as soon as she was fully admitted. I heard the surgeon call several times for updates after he left.

Everything was happening fast and Kellisa was a champ like always. Things settled down for a minute and I removed our masks. I left Kellisa's in her bed. As she heard a knock on the door, she immediately picked it up and started pointing to her face and yelling "Me". She gets it!

It was the surgeon and he was ready. To my surprise, he started wheeling Kellisa out of the room towards surgery. Along the way, he picked up two nurses to help transport Kellisa's bed and her IV machine. I would later learn that the transport team at the hospital was overworked due to the surge and it could take hours for them to arrive to move a patient and the surgery couldn't wait.

We were in a holding area as another nurse went through more pre-surgery checks. I talked to the anesthesiologist who was interested in Kellisa's previous surgeries and want a strict accounting of everything she ate and exactly when in the last 24 hours. I also talked to the nurse who would be there during the surgery. She did her best to explain how things happen and I tried to listen attentively, but this was Kellisa's 23rd surgery and if you could Everett and Egypt, this was the 26th time I was hearing how the process goes down.

This was the first time I watched alone as my child was wheeled off to surgery. Lisa had been there with me the previous 25 times. It was difficult to suck it up to kiss Kellisa, tell her I loved her, and confidently tell her, "I'll see you soon!" 

After Kellisa disappeared around a corner, I was led to a large waiting area that was empty because it was around 8pm. I asked if I could get something from a vending machine because I hadn't eaten or really even drink anything on this whirlwind day. I was devastated to hear I couldn't leave the area due to new COVID-19 restrictions.

The difficult time of waiting was made far more difficult because I was not only alone, but I was worried about how Lisa and Egypt were doing at home so far away from Kellisa even though our house is probably less than a mile away as the crow flies. I know from past surgery to not ask how long it will take and I do not watch the clock. I resist those urges at all costs for my mental well being.

I can only guess, but it was probably between 60 and 90 minutes before the surgeon found me. He didn't waste time and started by saying, "She did great and the surgery went well."

He went on to explain that he removed approximately 12 ounces of fluid and samples were taken to determine the exact type of infection so they could use the best antibiotics to attack it. He also explained we would be there for 2-3 nights and that he left the incision open to continue draining. We would go home with it open and it would close by itself.

What?

It wasn't long before I was escorted to recovery to be reunited with Kellisa. While I waited, I sent Lisa text messages with the update. Kellisa was waking up when I entered her area and she was not happy. Her looks could have killed a dozen grown men. Once the nurse was confident her vitals were stable, Kellisa was free to return to her room. Once again, they didn't want to wait for hours for transport, so two nurses wheeled Kellisa back to her room.

By the time we arrived back in her room, Kellisa was starting to laugh a little and almost giggle as the nurses struggled with her bed. They even bumped it a few times which was alright with Kellisa. I was waiting on the other side of her room as the nurses were doing their thing. I noticed a meal tray in the room and hoped I could eat it for dinner. I knew I was stuck in the room until at least the morning and I was struggling at this point and needed fluids more than food. 

After a few minutes, the nurse told me the meal tray was for me. She explained that they wanted to take it away, but she asked them to leave it because she knew I was in a bad situation between when we arrived and how I'd been on the go the entire time while planning to spend the night. It was the best hospital food I've ever had and shortly after finishing, Kellisa and I settled in for a long night as nurses would be coming and going as they kept close watch during the first hours after surgery.

Kellisa would spend two nights in the hospital and we went home last on a Saturday night. I stayed the entire time with Kellisa and the hours passed slowly, but we enjoyed watching many movies. Kellisa liked watching Happy Feet and my favorite was Daddy's Home 2. It was just easier for Lisa to stay home with Egypt since they couldn't visit due to new hospital policies. Since Kellisa is 21, strings had to be pulled to allow me to stay. Kellisa was excited to go home and see mom and her sister. She was also excited to get a new reclining leather chair for in her room. We are hoping it will be a comfortable way for Kellisa to spend time in her room and lower the risk of pinching off her ducts.

Ice cream is the best medicine!

Watching Happy Feet.

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Back to Kellisa's Path Blog

Christmas 2005

Christmas 2005

The picture below might be shocking, but it's nothing compared to how Kellisa looked when she was wheeled back to her hospital room on December 16, 2005, following her shunt replacement surgery. Even though it was her 18th surgery (as of 12.25.05), I was not prepared to see her shaved and heavily bandaged head. This would be Kellisa's 3rd surgery in as many months. Kellisa had two shunt repair surgeries, one on October 6th and one on November 15th. When the repairs did not work, a complete shunt replacement was necessary.

 Like usual, even though Kellisa was only nine days removed from a major surgery, she was back to her usual self as she enjoyed Christmas:

All dressed up for a traditional Christmas dinner:

You can see hints of a scar on her neck (left side) in several of the above pictures. However, we don't have a clear picture of the scar. The neurosurgeon had to open Kellisa's neck to help the shunt's drainage tube down to her stomach. 

Timms Hill

Kellisa's 20th State Highpoint

Timms Hill, WI

1,951.5ft.

September 2011

Elevation Gain on Hike: 121ft.

Round Trip Hiking Distance: 0.5 miles

Road leading to the summit trail:

The trail was a little steep, but was adequately wide and flat which made it fairly easy for pushing Kellisa:

The highpoint sign under the large observation tower:

The actual summit marker under the tower:

We had "lofty" plans for the summer of 2011 that included our cousin, Matt. Unfortunately, everything had to be cancelled because Kellisa had two surgeries (July and August) and is still suffering for complications (March 2012). With a lost summer behind us, we decided to take a quick Labor Day weekend trip with Matt to the upper Midwest. 

The next two photos are pictures of Matt at the top of the observation tower while he is taking a picture of me and Kellisa at the bottom. I might have been able to carry Kellisa to the top of the tower, but it would have been a dangerous struggle to say the least and not worth the risk in my opinion. I could have easily left Kellisa with Matt to climb the many stairs to the top to enjoy the views. However, I have a self-imposed policy when traveling with Kellisa: if we can't do it together, I don't do it alone. It's not always easy, but I followed my policy. 

With 40% of the states summits below us, we headed back down the trail:

Campbell Hill

Kellisa's 4th State Highpoint:

Campbell Hill, Ohio

1,547ft.

May 2006

Campbell Hill was our second Highpoint of the day after stopping at Hoosier Hill in neighboring Indiana. It was another easy summit with a drive-up and short walk along a sidewalk. We were in Ohio to celebrate Kellisa's Uncle Jim's 50th Birthday Party:

 Our gift: Older than Dirt t-shirt

Kellisa enjoying the party in the above two pictures. Kellisa has short hair because she had her head shaved for a shunt revision surgery 6 months earlier in December 2005. Kellisa had a shunt for 2 1/2 years without any issues before she started having some swelling behind her ear over the shunt's tubing. In October 2005, Kellisa had surgery to replace just the tubing. As she healed from the surgery, the swelling returned. In November 2005, the neurosurgeon replaced the tubing a second time. Since the swelling continued for no apparent reason, the doctor decided to remove the shunt and change the location of the new shunt and tubing with a surgery in December 2005. Because the shunt was moved to an area just above her forehead with the tube running along her hairline, back around the left ear and down the neck to the stomach, the doctor had to shave her entire head.

Kellisa had another Bilateral VDRO surgery in January 2006. It would be her 4th surgery in as many months and 19th to date. It was another 6 weeks of constant pain and suffering during the recovery period. You would never know it from Kellisa's face just a couple of months later. 



Britton Hill

Kellisa's 2nd State Highpoint:

Britton Hill, Florida

345ft.

November 2004

We stopped at Lakewood Park, home to Florida's Highpoint- Britton Hill, on our drive home from visiting the Buckingham's for a Thanksgiving feast in Texas. It was about a 2 1/2 hour detour for Kellisa to reach her second state highpoint. It's probably the easiest of the 50 highpoints to reach with a drive up and short paved path to the actual top of Florida. I just carried Kellisa to the granite marker for the customary "summit" photos above.

In the the 18 months before visiting Britton Hill, Kellisa continued down her rough medical path following her shunt infection of Spring 2003. Unable to drink and eat enough to stay adequately hydrated and maintain a healthy weight, Kellisa had a g-tube surgically placed in her stomach in June 2003. This would allow fluids, including prescription formula and medicine, to be directly inserted into her stomach. It's suppose to be an easy, routine surgery with only a 1% chance of complications. Never one to venture beyond the 1%, Kellisa's body was rejecting the g-tube by pushing it our of her stomach. Following a month of "nursing" the g-tube, Kellisa had a follow-up surgery to remove and replace the original  g-tube with another. Again, true to her nature, Kellisa continued down the 1% path after the second surgery. She suffered from granulation tissue growing out of the hole in her stomach. Kellisa had to visit the doctor to have the granulation tissue burned off several times a month. It finally got to the point where the doctor sent us home with silver nitrate to burn the granulation tissue ourselves as necessary to avoid the constant doctor appointments. Kellisa would need to be held down by one person while the other burned the tissue. After many months, the granulation tissue eventually stopped growing and Kellisa was beyond the g-tube surgeries.

In September 2003, Kellisa had Bilateral VDRO surgery. This would be her 13th surgery to date and by far the most painful and difficult to manage as parents. Because Kellisa wasn't bearing consistent weight on her legs, her hip socket did not grow around the ball of her hip. This eventually caused constant pain because her hips were dislocated and were moving freely. The surgery consisted of placing hardware in her leg bones and removing a section of bone in both legs to help force the hips into place with the hope of the socket developing to the point were the hips wouldn't be dislocated.

Kellisa was in constant pain and discomfort for 6 weeks despite being on strong pain killers that were dispensed every 4 hours. To make things worse, Kellisa suffered from leg spasms which would intensify the pain. We set up a mattress in front of the television in our living room as a place for Kellisa to attempt to sleep during the night. She would moan and cry most of the night from the pain. We thought the TV might help her fall asleep and if not, she could watch the Disney Channel. We took turns sleeping on the couch above Kellisa to be in position to comfort her when she would cry out. This would also allow the other parent to try and get a decent night of sleep. However, her cries would awaken us no matter where we slept in the house.

Kellisa was diagnosed with acid reflux in January 2004. Add another daily medication to her growing pill box. Everything would be quiet for several months before Kellisa had another surgery, this time a 2 for 1: Tonsillectomy and Adenoidectomy because of sleep apnea in August 2004. The surgeon would remove the tonsils and adenoids with a laser. To every one's amazement, one of Kellisa's tonsils would grow back even bigger than they were originally. The doctors have said that this is as close to impossible as you can get. We've even had doctors ask "what is that on her throat?". Some have even had to look for themselves because they've never heard of tonsils growing back after laser surgery.

Brasstown Bald

Kellisa's 1st State Highpoint:

Brasstown Bald, Georgia

4,784ft.

May 2004

Brasstown Bald- we arrived just a few minutes before the summit area closed. Normally, the summit is reached by gaining 400 feet along a 1/2 mile path. The park does provide a shuttle to those with disabilities. No one was around and knowing this was our chance to reach the actual highpoint on this trip, I decided to drive up the road reserved for the shuttle. After I parked, I hung Kellisa's disabled parking card from the mirror in the hopes of not getting locked in for the night and for good measure in case of a ranger encounter.

I carried Kellisa to the highpoint which wasn't far and we took the pictures above before quickly returning to the van where a park ranger was waiting. She was not happy as she lectured us on the park rules we were violating. I don't think she believed Kellisa was really disabled because I left her wheelchair in the van. With a strong warning, we left following the success of Kellisa reaching her first state Highpoint.

Before stopping at Brasstown Bald, we stopped at Amicalola Falls State Park. For most people, the 729 foot cascades (highest in the Southeast) that give the park it's name is the main attraction. Also, Appalachian Trail (AT) Thru-Hikers know this park because of the connecting trail to the southern most point of the AT. The reason for our visit was the West Ridge Falls Access Falls Trail that is wheelchair accessible. It would be our first hike while pushing Kellisa, even if it was an easy trail that was accessible. We were outside and would get to view a beautiful waterfall.

I wasn't satisfied after the short accessible trail. While Kellisa had an awesome wheelchair at the time, it was anything but trail worthy. My passion for adventure had been awakened after a 5+ year hibernation. I decided to try a "real" trail with Kellisa. It would be steep, muddy, rocky, scary and fun! Looking back, it was one of the dumbest things I've ever done with Kellisa, but at the same time one of the most important. With people looking at us like I was crazy, it took everything I had to get Kellisa up the trail to a better viewpoint of the falls. This was the day I realized I could share my love of the outdoors with Kellisa.

On our way home from Brasstown Bald, we stopped for a short visit at Tallulah Gorge State Park. The gorge is nearly 2 miles long and 800 feet deep. We were pleasantly surprised to find a paved trail to several outlooks for easy viewing of the gorge. 

                                                             Tallulah Gorge:

                                  

                                   

Kellisa had just turned five the week before this trip and had already endured 13 operations, including 7 brain surgeries. The 14th (feeding tube) was scheduled less than a week after we would return from this mini-vacation. Needless to say, we didn't have the time or opportunity to pursue outdoor adventures.

The previous year had been a particularly rough year for Kellisa. Only her first year of life could rival her medical issues suffered during 2003. Kellisa started having a high fever in early March and was suffering from dehydration and lethargy. We were seeing several doctors every week and Kellisa was admitted into the hospital on the 12th for a three day stay. The doctors were struggling to determine a definite cause for Kellisa's illness. The fever would end up lasting over a month. The doctors thought it was just a persistent cold/flu since it was the right season and Kellisa didn't have a healthy baseline to begin with. It was our strong belief that something was wrong with Kellisa's shunt, mainly because it had been replaced four times since the original surgery and we knew the signs. After a CAT scan, we were told that the shunt was functioning properly.

Because of our persistence, the doctors were testing and checking all the possible causes off their lists when they came to HIV/AIDS. Normally, we wouldn't have been concerned, but Kellisa had received several blood transfusions to keep her alive while in the Neonatal Intensive Care Unit.  Kellisa was near death and no one could figure out why and the doctors were testing for HIV/AIDS.

While Kellisa lay in her hospital bed almost lifeless, Lisa was flicking through the channels on the TV. As Lisa paused on the Disney Channel, Kellisa immediately showed some life as she perked up a little. A show called The Wiggles was on. We had never heard of The Wiggles, but this was the first signs of life from Kellisa in several weeks. From this moment on, Kellisa would get excited every time The Wiggles came on and we started purchasing their DVDs. We sincerely believe that The Wiggles played a significant role in saving Kellisa's life back in 2003. At the very least, they gave her enjoyment in her darkest times. For this, we will forever be indebted to The Wiggles!

Until now, the school picture below has never been shared and her sickly image is just as disturbing today as it was seven years ago. The picture was taken on March 27, 2003: 

Fortunately, the HIV/AIDS testing came back negative. However, Kellisa was still fighting to survive on April 9th when we took her back to the hospital. We refused to leave until they tapped her shunt. We were told that it was impossible for the shunt to be infected because it had been in place for two years and the CAT scan looked perfect. The neurosurgeon eventually gave in and tapped the shunt. Satisfied, we left for home. We already had a message from the hospital with the results when we arrived at home less than an hour later. The shunt was grossly infected and they were scheduling the surgery for the following morning.

For many reasons, including the fact that Kellisa's neurosurgeon was close to retirement and she had been sick for so long without proper diagnosis, we were not comfortable with having the surgery performed in Jacksonville. Before we moved to Jacksonville, Kellisa had a great neurosurgeon in Orlando, FL. We decided to drive down to Orlando and have Kellisa admitted to Arnold Palmer Hospital. At first, the neurosurgeon was reluctant to accept Kellisa out of professional courtesy to the Jacksonville doctor. We pleaded our case and he eventually decided to review Kellisa's case.

We were asleep in Kellisa's hospital room when the doctor woke us up at 4:30am. He had been up all night performing emergency surgeries before he could review Kellisa's case. Knowing that he placed the shunt back in May 2001 and the CAT scan looked perfect, he believed that it was so unlikely that the shunt was infected that he doubted the test results. He wanted to tap the shunt himself which he proceeded to do in the hospital room. The infection was confirmed and they were taking Kellisa at 6:30am for her emergency brain surgery.

Kellisa's shunt and tubing had to be completely removed from her body before a temporary shunt could be placed. This shunt would be external and the excess Cerebrospinal Fluid would be collected outside the body and frequently tested for infection. After the surgery, Kellisa was on strong antibiotics to kill the infection. We were advised that it could take a week or even a month before the infection was completely gone from her body.

Kellisa would remain in the hospital until a permanent shunt could be placed. But this surgery couldn't happen until the infection was gone. It took only seven days to wipe out the infection that almost killed her. Kellisa would have another surgery on April 18th to remove the temporary shunt and replace it with a permanent programmable shunt.

This surgery would be one of the hardest on us as parents even though Kellisa was past the worst of her sickness and it was our 10th surgery with Kellisa. We were told that the surgery would last about three hours. Lisa and I had a normal routine that we followed after every operation. Once Kellisa was wheeled away towards the operating room, we would go to the hospital cafeteria and have a meal while discussing something positive before returning to the waiting room where we would let the nerves settle in as we tried to read a book or magazine. The nurse called about an hour in the surgery to give us an update that everything was going as planned. Two hours went by and then three, three and a half and still nothing. We were out of our minds with nervousness as four hours passed without an update. The volunteer lady at the desk couldn't help us.

Finally, at four and a half hours, another neurosurgeon in the same practice came out to give us an update. He apologized for the delay and told us that everything went OK and Kellisa was waiting for us in recovery. He would go on to explain that three kids were involved in a serious car accident and all three needed emergency brain surgeries. The kids were admitted while Kellisa was in surgery and the doctors and nurses had to immediately attend to the other kids following Kellisa's operation. We were relieved and understood why we were kept waiting. I couldn't help but have thoughts of losing Kellisa during the wait and those thoughts still haunt me today. 

Kellisa came out of the surgery and was back to her usual self in no time. We will forever be indebted to Dr. Pattisapu for saving Kellisa. Because it was a new shunt, we still had to worry about the body rejecting the hardware and tubes. There was also the possibility of another shunt infection during the first year following the placement. The shunt would last until October 2005.

                                                                    

Born Alive

Rush Medical Center

May 23 to September 13, 1999

"They were born alive".

Most new fathers probably take for granted that their baby/babies would be born alive. I did not have that luxury, so hearing those words as the doctor ran by me in the hospital hallway were the greatest words ever spoken to me.

The best doctors in Chicago prepared us for the worst, if Kellisa was born alive, they said she would live no more than a couple of hours. Kirsten was the healthy twin. The girls were born 9 hours and 21/22 minutes into the 25th week of gestation by emergency c-section. The situation was such that the doctor was willing to start the c-section without anesthesia. Fortunately for Lisa, the anesthesiologist arrived just in time. The minimum for any baby to survive is the 25 week point. It was obvious the girls were on the edge of life, but they were off to a good start.

Both girls made it through their first night. Unfortunately, Kirsten's blood vessels weren't developed enough to survive outside the womb and she passed away on May 24, 1999. Devastated and heart broken don't even begin to describe the feelings of losing a baby. Kirsten was suppose to be the healthy girl and she was gone. A few feet away, Kellisa was fighting for her life and we had to find the strength to be supportive for Kellisa. We needed Kellisa as much as she needed us.

Kellisa (foreground) and Kirsten:

Kellisa's birth weight was 2 pounds and 1.33 ounces. Lisa's hand inside the incubator to provide a perspective of Kellisa's size:

Kangaroo-therapy is the practice of holding premature babies with skin to skin and heart to heart contact with the mother and father. Even though Kellisa was extremely unstable and fragile, we began kangaroo-therapy within a week of Kellisa's birth. One afternoon as I was enjoying a kangaroo-therapy session, the alarms went crazy indicating that Kellisa stopped breathing. This happened fairly often and you get to the point where it doesn't worry you too much because you would just flick Kellisa's foot and her breathing would always start back up and the alarms would stop. This time was different, Kellisa coded and doctors and nurses scrambled from every direction to work on reviving Kellisa. It took 45 minutes to stabilize Kellisa enough to move her off my chest and return her to the incubator.

Kangaroo-therapy with dad and mom:

A nurse holding Kellisa:

When Kellisa was less than two weeks old, she needed her first surgery. Kellisa was born with a PDA, a congenital heart defect where her ductus arteriosis did not close after birth and needed to be corrected with surgery.

The red arrow points to the scar on Kellisa's back from the PDA surgery:

Kellisa was born with hydrocephalus, a build up of fluid inside the skull. We knew Kellisa would need a shunt placement to help drain this fluid, but the neurosurgeon wanted Kellisa to weigh a minimum of 4 pounds and 6.54 ounces before attempting the operation. Towards the end of July, Kellisa was getting close to the target weight.

Kangaroo-therapy on July 25th:



The pressure was building up inside Kellisa's skull and her head was increasing in size everyday. At 4 pounds and 3.02 ounces, the neurosurgeon decided we couldn't wait any longer and a V-P Shunt was placed.

The shunt was placed at the back of Kellisa's head and a tube runs down to her stomach where the excess fluid is drained and reabsorbed by the body. Two bandages are over the shunt site and where an incision was made to make sure the tube was correctly placed in her stomach area: 

Kellisa's first EEG on August 6th to check for seizure activity:

August 10th, Kellisa sleeps in an open bed on a nasal cannula:

If you look closely, you can see the scars from Kellisa's shunt surgery:

 August 16th, Kellisa has her 2nd EEG:

 August 19th, for the first time, Kellisa does not have tape on her face:

 August 28th, Kellisa is not enjoying her first real bath:

Kellisa would spend 16 weeks and 1 day in Rush Medical Center (formerly: Rush-Presbyterian-St. Lukes Medical Center). Lisa spent every night, except for a couple, sleeping in the hospital. I averaged 4-5 nights a week also sleeping in the hospital. We basically moved in to the hospital to be close to Kellisa and encourage her as she fought to survive. I credit Kellisa's toughness and determination as the main reasons she survived, but I truly believe our constant presence, love and support also played a roll. 

 Just down the hall from Kellisa, this is the room we called home for 113 days and lived out of the black and yellow backpack on the floor:

Kellisa's last bed space:



Kellisa would finally be released on September 13th. The discharging doctor was the same doctor that told me the girls were born alive. I asked the doctor if he thought Kellisa would ever go home back on May 23rd. This is a doctor who works in a Neonatal Intensive Care Unit that takes care of 90-110 babies at any given time, so his experience and opinion is beyond question. He responded that he never would have thought this day would arrive. If we would have asked for odds back in May, he would have given Kellisa a 5% chance of ever going home...just to give us a little hope.

Kellisa was still on oxygen and multiple medications, but was finally going home on September 13th:



The final approval was granted when Kellisa was fitted in her car seat with the help of a nurse and several hospital towels:



 Finally home:

 Kellisa sleeping in her own bed for the first time: