June 28, 2015 "Day 4"

Sunday- (Day 5)-So far the CSF cultures are still negative. They took another culture today. We are praying they all remain negative. Although he still has an IV so they can administer the antibiotics, they discontinued the IV fluids because he is eating so well. The blood work showed that his Vanc levels are good but they still have to get blood every day. They are going to ask Infectious Disease the length of antibiotic therapy needed. They are thinking he will need the Vanc for seven days. So they are going to try the PICC line again tomorrow. He will need to be sedated so they are not allowing him to eat (NPO) past 4 am.

Michael has to leave tonight to work tomorrow so he is spending as much time with Rayden as possible. He fed him twice today. Rayden actually fell asleep sitting with his Daddy. He never does that. I suppose he knew Daddy had to leave. Linda will be staying with me to help with Rayden.

Rayden continues to pull on the "ever so valuable" IV so his nurse, Ladona, placed a 'no-no' on his arm. He actually likes it.

June 27, 2015 "Feeling much better"

Saturday-(June 27)-We were able to get a room at the Ronald McDonald House for the remainder of Rayden's stay. We arrived this morning to a bright eyed little fellow! Two nurses were surrounding him admiring his beautiful eyes. When he saw his Daddy he smiled so big. They all said "Awww." But when he saw his Mommy he cooed real loud! My heart just melted!!! He continued to coo loudly over and over! What a relief to see him feeling so much better this morning. 

The culture taken in the ER has been confirmed to be Staphylococcus epidermidis (Staph) so they discontinued one of the antibiotics. He is on Vancomycin. It is a very strong antibiotic so his blood has to be drawn every day to check the level in his body. If it's too high it could make his kidneys shut down. Today his Vancomycin (Vanc) levels are low so they are increasing the dosage. 

So far the first culture after surgery has been clean for 24 hours! It has to be clean for 72 hours to be declared negative. 

With his CSF draining outside of his body he is not absorbing the needed sodium it contains. Therefore they check his sodium levels as well. Today it is perfect. 

Rayden continued to be energetic and playful the entire day. He cooed and talked to everyone that came by. When he was playing with his papa he got real loud. All the doctors wanted to come see the "happy baby." They said they "don't get to see happy babies very often up here." If he didn't have this tube coming out of his head (EVD) he could go to the floor instead of the PICU. It's hard to believe he had brain surgery less than 48 hours ago.

By the end of the evening Rayden had a hard time resting. Michael stood by his bedside for about 45 minutes rubbing his little head until he fell asleep.

June 26, 2015 "Post Op"

Friday-(June 26)-After no sleep at all Wednesday night, Michael and I slept a couple of hours and showered in a motel room. (The Ronald McDonald House was full) We arrived this morning around 6:30. I was relieved to find that Rayden had a good night. They are still giving him tylenol for pain. Although he has been a little fussy he was actually trying to talk to us a little. He even took his ball when offered. This is more like it! When Nurse Craig and I tried to change his diaper we made a mess of the sheets. The best way to change the bedding was to get him out. This meant that I could finally hold my baby! I was super excited. Craig turned the drain off the ETV and gathered the cords to pass Rayden to me. He seemed as excited as I was to cuddle. Craig let me try to feed him. He really wouldn't drink much, only about 2 oz. He acted like his throat was hurting (probably from the breathing tube). All too soon it was time to return to the crib. The IV blew due to the strong antibiotics so they had to put in another one. It's so pitiful. During the doctors rounds they discussed putting in a PICC line because Rayden has so many antibiotic treatments coming. They can't keep sticking him over and over because the IV's only seem to last a day or two. Not even to mention they have to draw blood every day and the vein with the IV in it can't keep up. They drew the first CSF culture today. At least they don't have to stick him for that. It comes straight out of the EVD reservoir. They will draw another one on Monday. He needs 2 negative cultures 72 hours apart. The Infectious Disease team does not know the speciation of his infection yet so he is still receiving both antibiotics.
10:30 am- The PICC team came to examin Rayden's arm with an ultrasound machine for possible vein entrance. After a long explanation and written consent they sent us out to get started. PICC stands for peripherally inserted central catheter. It is used for prolonged periods of time. Michael and I went up to the Ronald McDonald room for a snack while we waited. When we returned they reported that they couldn't get the line in. They are going to try again on Monday. My poor baby!!! He always has such a hard time with IV's and this means they may have to stick him several times throughout the weekend!
6:00pm- So far they say the first culture is still negative. Praying it continues to be negative for the duration of 72 hours.

June 25, 2015 "Shunt Infection"

We got settled into room 6C15 about 4:00 am! Poor little Rayden had been poked and prodded so much. We were all so tired. Michael and I layed down on the pull out coach bed in the room. His nurse came in at 4:30 and 5:30 to administer antibiotics in his IV. The pediatric neurosurgeon came in at 6:00 am to tell us that the culture had started growing which means his CSF is infected (meningitis). They had already scheduled the surgery at 11:30 am. I couldn't believe he had a shunt infection! How in the world did this happen? What does this mean? My poor baby keeps having trouble. This will be his 6th surgery and he's only 6 months old!!! The neurosurgeon said that Dr. Elton would be in around 7am to talk with us. When he arrived I just broke down. I didn't want to ever have to see him again! Gretchin hugged me while Elton told us the seriousness of what Rayden was facing. He said if there is an infection in the CSF that it will travel into the shunt and it will become infected as well. Therefore he will need surgery to take out the shunt, antibiotics to clear up the infection and a second surgery to put in a new shunt once the infection is clear. Antibiotics can stop the infection in the CSF but since the shunt is not a living thing, antibiotics cannot reach all of the bacteria stuck to it. Even if the infection in the CSF clears up, it may come back if the shunt stays infected. While they are waiting for the infection to clear Rayden will be placed on an external ventricular drain (EVD). An EVD is a temporary drain that drains cerebro-spinal fluid (CSF) from the lateral ventricles in the center of the brain to an external reservoir. The EVD consists of a thin plastic tube (catheter) which is placed into the ventricles of the brain and connected to an external drainage system. They will take a culture sample every three days. When they get two consecutive clean cultures they will be able to replace his shunt. This means Rayden will remain in the PICU for at LEAST 6 days, if not more.

11:30 am-We are all too familiar with the process of surgery now. But no matter how many times we do this, it will never be easy. I was already crying when the anesthesiologist came to take Rayden to the OR. I can't stand the thought of him having to have brain surgery over and over. Michael and I just stood there in the waiting room holding each other and saying a prayer for Rayden. God, please protect our little precious gift.

Michael and I went back to Rayden's room on the 6th floor to find Nanny, Papa, Alex, and Pastor Brad waiting for us. We all prayed for Rayden and gathered our belonging to move to the PICU. On our way to the PICU waiting room we met Dr. Elton in the hall. He reported that Rayden came through the surgery just fine and we could see him soon.

1:00 pm- Michael and I finally got to see Rayden. As soon as I walked in I could hear him crying and said "That's my baby." The nurses laughed at the thought of me being able to identify his cry through all of that noise, but I was right. Rayden's eyes were swollen. He seemed relieved to hear our voices though. He calmed down and closed his eyes as we talked to him and held his little hands. I noticed they cut A LOT of his hair off and the EVD was protruding out of the back of his head. It was a scary sight at first. I will never get used to seeing my baby hooked up to

machines. The EVD relieves elevated intracranial pressure.
It drains fluid from the ventricles of the brain keeping them decompressed. It has to be observed closely with neuro checks every hour. The drain is set to 15cm above the level of the tip of his ear. CSF flows out into the measuring chamber and then drips into a bag. With all of this having to be set just right Rayden has to stay pretty stationary. We can't get him out of the crib or even sit him up. If he moves too much it will dump a lot of CSF causing him to have a massive head ache.

4:00pm- They allowed us to try and feed Rayden some milk. Although we couldn't get him out of the crib, we did prop him up on my pillow. He only ate about 4 oz. but that seemed to make him feel so much better. He even started playing a little bit with the cords.

The Infectious Disease team informed us that shunt infection is usually caused by a person's own bacterial organisms not from other children or adults who are sick. The most common infection is a skin bacteria (Staphylococcus epidermidis). It is normally found on the surface of a person's skin and in the sweat glands and hair follicles deep within the skin. This type of infection is most likely seem 1-2 months after surgery, but can occur up to 6 months. Rayden's last surgery was 2 months ago. They have Rayden on two very strong intravenous antibiotics. When they identify the specific organism they hope to eliminate one of the antibiotics.

June 24, 2015 "ER"

Rayden was not really himself today. He practically slept all day and wanted me to hold him. When I sat him up he would scream. He has been spitting up his milk pretty bad too. I thought he had a belly ache because we stopped warming his bottles yesterday. Then I noticed he had a fever of 100.7 around 12:30. Thinking it was probably just teething, I gave him tylenol and waited two hours to see if it would go down. At 3:00 it was still 100.5. Rayden's pediatrician was out of town so we were told to just go to the ER. By the time Michael got home at 5:00 his fever was up to 101.5 and I noticed his fontanelle was full. I couldn't feel the bones around his soft spot, and the veins in his head were darker. It was definitely time to go to the ER. On the way there Rayden continued to throw up and his fontanelle was getting higher! I couldn't believe something was wrong with his shunt again!!! Why does this keep happening?

We arrived at the UNC ER around 7:00pm. They looked for signs of infection by doing a urine culture (catheter) and blood work. They also examined the shunt by doing a MRI and XRay. Around 11:00 pm the pediatric neurologist on call reported that the urine came back clean, MRI and XRay showed the shunt was working fine, but his blood work showed that his white count had TRIPLED!!! There was obviously a huge problem somewhere. In order to see if the infection was in the cerebral spinal fluid (CSF) he needed to tap the shunt. (kinda like a spinal tap) Rayden was so agitated that he asked me to suit up and stay in the room while he completed the tap. He made the room as sterile as possible and we got started.

He inserted a small butterfly needle into the shunt reservoir. CSF started flowing into the manometer (a tall test tube looking instrument that uses liquid to measure pressure). The more agitated Rayden would get, the more fluid shot up the manometer. The neurologist asked me to give Rayden some pedialyte to calm him down long enough to draw about 12 ml. of fluid. When he got finished, around 2:00 am, he stated that they were going to admit Rayden into the hospital for observation at least until the culture came back.

June 23, 2015 "6 mo. old"

Rayden is 

6 months old.

Happy 1/2 Birthday

Weight: 16 lbs. 

June 20, 2015 "Mommy's Little Peanut & Father's Day"

Mommy's Little Peanut has gotten so big. He is trying so hard to sit up. He wobbles back and forth and slobbers the entire time, but ohhh how cute he is!
I hate to say it, but I do believe he is a Mommy's boy!










Father's Day was extra special this year with Rayden in the mix. 

Silent Strong Dad

He never looks for praises
He's never one to boast
He just goes on quietly working
For those he loves the most
His dreams are seldom spoken
His wants are very few
And most of the time his worries
Will go unspoken too
He's there.... A firm foundation
Through all our storms of life
A sturdy hand to hold to
In times of stress and strife
A true friend we can turn to
When times are good or bad
One of our greatest blessings,
The man that we call Dad.

© Karen K. Boyer 

Source: http://www.familyfriendpoems.com/poem/silent-strong-dad#ixzz3e75LxJlR
Family Friend Poems 

June 17, 2015 "Wheaton Braces"

Rayden returned to Dr. Narotam Monday to remove the 14th set of casts. He was pleased with Rayden's range of motion and actually stated that he DID NOT believe Rayden needed any additional surgery!!!!!!! Praise God! To maintain the correction after casting, Dr. Narotam is trying the Wheaton Brace KAFO (Knee-Ankle-Foot-Orthosis). It is lightweight and removable. It is a foot brace connected to a knee brace with touch fasteners. The upper component keeps the knee flexed at 90 degrees. The strap above the knee pushes his foot down preventing his heel from rising out of the lower component. The lower component keeps his foot in the neutral position. As you can see from the picture, he is happy to be free from the casts.


Being aware that Rayden could form skin blisters, I used long, thin socks to form a barrier between the braces and his skin. Wednesday morning I took his braces off to find a blister forming behind his right knee. It was bright red, moist, shiny and sticky. I washed his legs with soap and water. Mrs. Emily, PT, helped me take a picture to send to Dr. Narotam. He said to use socks, pants, or moleskin to keep the brace from rubbing his skin. (I already used socks!!!) I rubbed some powders behind his knee and allowed Rayden to take his nap with the right brace removed. After 1 1/2 hours the blister is not as red or shiny, but it is puffing up.

June 13, 2015 "Oatmeal"

Rayden will be 6 mo. old in 10 days (4 mo adjusted). We have been anxiously awaiting the day we could feed him with a spoon. Dr. Chiodo finally gave the go ahead so we were excited. We mixed the oatmeal and milk in a 'watery' consistency for his first time. At the beginning he didn't seem to understand the spoon but it didn't take him long to realize it was holding his food, haha! Below is a short video clip of Rayden's first time eating with a spoon.

June 8, 2015 "Casting #14"

Rayden is getting so strong. By the time this week was over he had beat his legs so hard that he punched a hole in the heel of his right cast. Dr. Narotam decided to use fiberglass casts this week. So we have our first colored casts...carolina blue, in honor of Rayden's blue eyes and his awesome UNC doctors. Below is a video clip of Rayden kicking his casts.

June 4, 2015 "Rayden visits CES"

I haven't been to Coats Elementary School since October, before Rayden and I had fetal surgery. I've been keeping Rayden fairly isolated to protect him from germs and sickness. Since school is almost out for the summer, I decided it was time for everyone to finally meet Rayden. It was a delight to see everyone's smiling faces again. Words cannot express how much I have missed my job, students, coworkers, and especially Barbara. She has been an absolute ROCK!! I've often commented that she was my 'right arm'. She totally proved that this year. She has kept our classroom afloat, engaged, and learning. What an awesome lady!!!

Although I didn't allow my students to touch Rayden, I thought they deserved to meet the reason they didn't have me as their teacher this year. I tried to explain Rayden's diagnosis to them (on a first grade level of course). They were on the edge of their seats interested! One student asked if Rayden could talk and, as if on cue, he started cooing and babbling! Laughter filled the room. Although I have not regretted my decision to stay home with Rayden this school year, I have felt somewhat torn about leaving my wonderful students. One parent made the most precious comment to me this evening that touched me so much. She stated that her daughter had come home thrilled to see us. "She has prayed for him faithfully and seeing him happy today filled her heart...Even though you haven't been there in person this year, you've been there in spirit. You and Rayden have taught 'her' lessons about faith and prayer that surpass reading and writing." I am so thankful that Rayden has been a positive influence and has left a lasting impression. Most of all, I am thankful that even Baby Rayden can be used by God to touch the lives of others. I know God has big plans for his life and I can see Him working through Rayden already!!! Praise be to God!

June 1, 2015 "Casts AGAIN!!!"

Rayden has been out of the casts in Thermoplastic AFO splints for a month now. He had an appointment with his pediatric orthopaedist, Dr. Vinay Narotam, today. He evaluated Rayden's range of motion. He believes the tendon, that was previously clipped, tightened right back up after healing. If I had not been so diligent with his stretches, Rayden would have lost all the progress we have already made through serial casting. He called in a pediatric orthopaedic surgeon, Dr. Anna Cuomo, for her opinion. They both agree that Rayden's clubfeet are severe and will need surgery around 12 months of age. He has thick, tight tendons that pull his heels up. (So his feet are like he has on high heels.) In the mean time, they agree that Rayden needs a few more series of casts with external rotation to get his feet as straight and flat as possible. They also want to repeat the Achilles tendon release (clipping).  So here we go again!!! Casts #13

May 31, 2015 "Baby Dedication"

 



Lord,
We dedicate this child to you knowing there can be no better gift than living in Your grace, resting in Your love, walking in Your ways. You've placed this precious life into our loving arms. And now, with all our faith and trust, our strength and love, we dedicate this child to You.

        A Parent’s Prayer 
Lord, thank you for this little one
So fresh from Your hand.
But we know our time with him goes quickly
Like the hourglass of sand.
And so we ask Your blessings on us, new parents
Of this precious life we share
And give You thanks that You chose us
To entrust him to our care.
May we always see him through Your eyes:
In Your image – a priceless treasure.
Help us teach him to follow Your ways
So his inner beauty is of countless measure.
May we always hear him through Your ears:
A joyful noise in every gurgle and cry.
Give us wisdom to teach him well
So his words glorify You on high.
May we always touch him with Your arms:
Every hug a reminder of Your love.
Give us patience, guide our path
As we raise this gift from above.
Give us laughter in our home:
Giggles, plans and schemes.
Give us faith and hope and love
And joy and delight and dreams.
And when we come to storms in life
As we, no doubt, will
Help us lean on You, bring us close
And Your Spirit in us fill.
So rain down Your blessings on us, O Lord
And on Your little one so new
For he is Yours, but entrusted to us,
Before we give him back to You.
Charlene Quint Kalebic ©

Our three sons mean all the world to us. How could something so perfect be entrusted to our hands? Why He chose us, I'll never understand. God blessed our lives when He gave us our boys. We are so thankful to all our family and friends who came to share in Rayden's dedication. Such a special day for our whole family. Thank you Dawn Wilkes for singing a special song for us. 

       

     
      

May 28, 2015 "Clinic Day"

What a day!

Today Rayden had numerous appointments. We started our day at 9:00 and didn't return home until 7:00!!

Rayden weighs 14 lbs. 6 oz. and is 25 1/2 inches long!

Gastroenterologist- Spina Bifida children often have bladder and bowel issues. Kathryn Bauk stated that when we introduce solids to Rayden he will more than likely become constipated very easily. Her recommendation is to start him on oatmeal or mixed grains, rather than rice cereal. She also said to give him the 'P' fruits, peaches, plums, prunes, pears, etc. If we can not control his bowels through his diet we will have to go to a Miralax or Milk of Magnesia regimen. Beyond that, we are looking at enemas! I pray for diet control! She also increased Rayden's reflux medicine only because he is bigger now.

Renal Ultrasound- Rayden had another ultrasound today. He will continue to have these from time to time. A renal ultrasound makes images of the kidneys, ureters, and bladder. It is ordered when there are concerns about certain types of kidney or bladder problems. If the kidneys are dilated (hydronephrotic) then other tests would be performed. Thank God, Rayden's exam showed wonderful looking kidneys and bladder!

Urology- Although Rayden has beautiful kidneys and bladder, he still has Cryptorchidism. His left testicle remains undescended. Dr. Ross says if it hasn't descended by now then it probably won't, meaning he will need surgery to correct it. She is going to wait another three months and then schedule the surgery.

Dr. Joshua Alexander, Director of the Spina Bifida Clinic, seemed pleased with Rayden's progress. He noticed that he was tracking with his eyes better, rolling over from belly to back, and holding his head up fairly well. He was bothered by Rayden not wanting to turn his head to the right and seems to feel like Rayden has a mild torticollis. (NOT the first time I've heard that!) He asked the physical therapist to come show me some stretches.

Physical Therapy- After showing me the stretches (that I've been doing on him for months, haha), she noticed his thumbs. Rayden tucks both thumbs inside his fists. We discussed how I have been addressing them at home with his 'dumbbell' socks and stretches. She made him some splints to hold his thumbs out. He thinks they are something to suck on.

Neurosurgery- Gretchin was so excited that Rayden has not had any issues since his last shunt revision. His shunt is still adjusted to 1.5, so that's good. We are still watching the fact that the left side of his head is higher than the right. She said no helmet right now, just watching. I was wondering if his Chiari II had decreased. A Chiari II malformation is where the brain stem is descended down the back of the neck. A reduction of Chiari is one of the benefits of having the fetal surgery.  When she looked at his last MRI results she said it was hardly noticeable!! Practically nonexistent!!!!! Praise God for some good news!