Caden’s Page

Caden’s condition is improving after a rough few days. He started running fevers well above 104 on Saturday. The fevers persisted his need for oxygen began to increase. He has been on oxygen 24/7 since Sunday evening. I listened to Caden with a stethoscope in Sunday and heard crackling sounds in his lower elft lung. I am not a doctor or nurse, but have had the sound described to me enough over the years to know that this probably meant pneumonia. Caden was diagnosed with pneumonia six times in 2011 and three of those episodes caused hospitalizations.

Sherry took Caden in to see the pediatrician on Monday. The pediatrician said he heard the same thing I did in the same spot. He did not see much use in a chest xray at the time because it was pretty obvious what we were dealing with. He was happy to hear that we were able to keep Caden’s O2 SATs up in the mid 90s on 2 liters of oxygen with a canula. He said as long as the need for oxygen did not increase he believed we could manage this at home. He gave Caden a Rocephrin antibiotic injection on Monday and told us to call if the need for oxygen increased. He also wanted us to monitor the fevers. He said the fevers should begin to decrease with the meds. Caden had to go back in on Tuesday for a second injection and his fevers had been staying lower. I think his fever got near 101 at one point but generally stayed normal or in the low-grade range. At one point we did have to increase CAden’s oxygen to 4 liters on Monday night because he had to be switched to a mask. It is understood that when you have to use a mask that the rate has to be much higher to get the same result on the O2 SATs so we did not call the doctor.

Sherry and I decided on Sunday to keep Caden down stairs in our family room at night. The amount of noise caused by his coughing and the suctioning required to keep his airway clear was much too disruptive to the rest of the family. We both also knew that if we did not force ourselves to take turns staying up with Caden to monitor him then this had the potential for getting much worse really quick if neither of us were awakened when he needed suctioning in the middle of the night. So we have taken turns on the couch beside Caden. He has bene on an air mattress with all of his medical gear within easy reach.

Things are improving and we believe that is a result of your prayers for Caden and our strength. Many of you follow me on Facebook where I have been posting the play-by-play. We appreciate your prayers and ask that you continue to pray for Caden and our family.

BTW…the photo above was taken last week during a trip to the SC Aquarium on Martin Luther King Day. The two below show my view of the world over the past few nights.

Caden is free of the cast that was on his left arm. If you missed it, Caden broke his arm just above the elbow back in December when he fell from the steps to the sliding board in our back yard. Caden saw his orthopedic surgeon on Friday the 13th as a follow up. Caden was nervous going into the appointment. His elbow had three temporary steel pins inserted during the surgery last month. Caden’s arm was set and the pins were placed while under full anesthesia during a surgery at the MUSC Children’s hospital a little over six hours after the accident.

The xrays taken of his elbow on Friday were bad enough showing these pins, but when they cut the cast off there these three pins were sticking out of his elbow like porcupine spines. It was probably a good thing that I had seen Caden with his chest open as an infant and with drain tubes running from between his ribs on many occasions or I might have passed out when the nurse completed the cast removal and exposed these pins. Caden looked a almost as alarmed at what he way as I actual was. Then the doctor came in with this plier looking tool and began pulling these pins our as if he were plucking a chicken. Caden expressed from discomfort by crying but the process was nowhere near as traumatic as I had expected when I first saw the pins. Caden was so happy to have his left arm free. He could not wait to show mommy and his brothers that his cast was gone. He is slowly beginning to use his arm a little more.

Scoliosis Surgery

We have a 4 week follow up appointment with the orthopedic surgeon. At that time they will check his arm and we will have a discussion about Caden’s next back surgery. We are nearing four months since the last back surgery. With the VEPTR rods in Caden’s back he is required to have surgery to lengthen them every 6-9 months until he is a teenager. Then the rods will be removed and they will fuze his spin to keep it straight.

Pneumonia

Five days after the surgery on Caden’s arm he was hospitalized due to pneumonia. Caden had begun running a 104 + fever just two days after the surgery. We initially were concerned that the fever might by related to the surgery. That concern took us to the emergency room on the second day after surgery. The doctors answered our concerns and said the fever was not related to the surgery. They checked Caden for pneumonia via a cheat xray and said he was clear. They diagnosed him with a severe sinus infection and sent us home on an antibiotic. Three days later Caden popped 104.6 fever in the middle of the night. His reparations and heart rate when through the roof. His heart rate was hanging just below 170 for a couple of hours between 3-5 am that night. Sherry took Caden into the pediatrician the next day. After listening to Caden’s lungs the pediatrician sent Caden back to the MUSC ER for another chest xray suspecting pneumonia. The chest xray confirmed the pneumonia and Caden was admitted and placed on two separate IV antibiotics. One of the two could only be given via IV. Caden was discharged from the hospital after three nights. This was his sixth diagnosis of pneumonia in 2011 with three of the six requiring hospitalization. Caden also had three other hospitalizations due to surgeries during the calendar year 2011 including the one night caused by the surgery on his broken arm.

Cast Art

Cast Art Distruction

Caden continues to improve. He has been fever free since Thursday when they began treating him for pneumonia and his need for oxygen during wake hours in decreasing. However we are proceeding with caution. Caden is still on two separate IV antibiotics and neither of them comes in an oral form. So a discharge will require us to change to a different antibiotic. Given Caden’s improvement and conversations with the doctors today we do expect to get offered a discharge some time Sunday. That puts us in a position of weighing risks. Normally we would be jumping for the door, but this time we may ask for another day here on the high powered drugs.

We have some concerns about jumping the gun with discharge. With Caden having multiple things going on with his little body including a broken arm, sinus infection, and pneumonia, we want to give him every possible chance to continue to heal and to make it through the holidays at home with his family. It is a bitter sweet Christmas for our family with this being the first one without Sherry’s mom. Certainly grandma is rejoicing with the King, but we continue Earth bound in this short life not knowing what we are missing. We will fight the grief that will certainly surface and try to remember the joy that Grandma is experiencing. As selfish as it may sound we want to do that together at home.

Caden is still weak and daily complaining of pain with his arm. The healing from the surgery (8 days ago) in that area of his arm and the lack of quality sleep caused by that pain as well as secretions from the sinus infection leads us to believe that he may have a harder time recovering from this round of pneumonia due to lower reserves.

Please pray for Caden’s continued healing. Also pray for Sherry and I to have discernment and clarity in communicating our concerns with the doctors.

Caden has had a rough week to say the least. He slept very little Wednesday night as he battled a fever that peaked at 104.4. His respirations were 60-70, heart rate was averaged in the 160s for over an hour and hit 170 at times, and he required 2.5 liters of oxygen just to keep his saturation levels in the low-mid 90s. These symptoms are similar but a little worse that what landed us in the ER on Monday night. On Monday the chest x-ray came back clear and they sent us home on an oral (feeding tube delivered) antibiotic. Last night was different and it scared me. I felt a little trapped since the symtoms were do similar to what caused us to go in on Monday, so i did not think going back to the ER last night would accomplish much. I did not get a wink of sleep until after 5:30am when the fever finally broke and dropped below 104 and Caden’s respirations came back down below 150.

I got up a couple hours later and told Sherry that Caden had to be seen by the pediatrician. It had been two days on an antibiotic things were worse. She agreed but could not get an appointment with Caden’s primary doctor until after lunch. She took that because Caden was much improved from his 5am condition just a few hour earlier. Once in the office Caden’s pediatrician said Caden’s left lung sounded like it might be collapsed and he wanted Caden to get another chest x-ray. He called the ER doc at MUSC and found out it was an old missionary buddy who was the same attending who was on last Friday evening when Caden came in via ambulance with the broken arm. Yes we got three trips to the ER in six days. Oh and this is Caden’s sixth hospitalization this year. (third time admitted in 2011 for pneumonia) Caden had pneumonia two additional times but was able to recover from those without hospitalization.

Please keep Caden in your prayers as well as our family. Caden is still feeling pain in his arm from the surgery last Friday. I think his is confusing this illness with the broken arm because he seems to focus on the arm no matter how bad other symptoms are. I have repeatedly asked the ER docs if the arm could be causing any of this fever and they say no.

Thanks a bunch for checking on Caden and praying for his rapid and full recovery.

Caden broke his arm Friday evening and that landed him in surgery about midnight. He and Riley were playing on the swing set when Caden feel backwards off the ladde. His elbow was dislocated and the bone fractured just above the elbow. Surgery was performed to reset his elbow and add a few temporary pins to hold things together. We expect to get a cast in the morning and discharge by the afternoon if all goes well. We are spending the night in the step down unit (7c). This unit brings back memories. Caden spent his first Christmas on this unit.

Seven years ago today at the Medical University of South Carolina our family was blessed with a new addition. Caden was born via C-Section early that Tuesday morning as the presidential election began that would result in the re-election of George W. Bush to a second term. The picture to the right is of Sherry holding Caden for a few minutes while he was off the respirator about 12 hours after his birth. Sherry and Caden both with IVs and Caden also with central lines inserted into his umbilical, heart telemetry, and other stnadds newborn monitors. The visit was cut short when Caden stopped breathing and had to be intubated while we waited just outside the NICU.

Sherry was only 36 weeks and 4 days into her pregnancy when she had the C-Section.  She had experienced a couple of hospitalizations and two amnio fluid draws in recent weeks due to complications. We would later learn that Caden’s lack of ability to swallow in utero was causing excess amniotic fluid that resulted in Sherry’s uterus measuring 52cm at 34 weeks into the pregnancy which led to extreme pain and bed rest. She had to sleep upright (mostly on the couch) for the last few weeks of the pregnancy. Two separate fluid draws to reduce her size and relieve the pain resulted in more than two liters of amniotic fluid being drawn off in the last two weeks before Caden was born. The fluid draw did allow for a sample to be tested to confirm before Caden’s birth that he would have an underlying diagnosis of a genetic deletion called 22Q11.2 commonly referred to as DiGeorge Syndrome.

Caden was later moved  from the MUSC NICU to the pediatric cardiology intensive care unit (PCICU). At the time this was an eight bed unit that was busting at the seams with patients. We would later learn that on average when you walked into that unit and looked at the eight kids you were seeing one that would not leave the hospital alive. We would learn the hard way how serious of a place this actually was in the days ahead. Caden had to wait a few days until a bed was available in the PCICU. Caden’s surgery priority got bumped up and things began to progress. We learned later that there was a fairly heated debate going on behind the scenes as to whether Caden was strong enough to survive surgery. We are fairly certain that the cardio-thoracic surgeon made the final call and said that Caden could survive the surgery. Caden would not have lived much longer without the first open-heart surgery at six days old.

At that time Riley had just turned 2 years old a few weeks earlier. We did not realize it at the time, but the PCICU staff let Riley come in to meet Caden because they were not sure Riley would ever get to see his brother alive if they didn’t allow it. Policy strictly prohibited children under 12 years old from entering the pediatric ICUs.

At six days old Caden would get his first and technically his second open heart surgeries. The first was planned for months before his birth and went about as good as we could have hoped for. A few hours after the surgery Caden began to experience inflammation around his heart. They tried inserting another chest drain tube but that was not enough. His heart was swelling to a point that it was affecting the hearts functionality. One of the doctors came out and told us they were working on Caden and would likely have to open his chest back up to relieve the pressure. A while later the surgeon had a conversation with us that left us is shock. He spoke those dreaded words, “I have done all that I can do.” We thought we were going to lose him that night. Thank God He had other plans for Caden. We have had other brushes with death since and will never in this life understand all that God is doing with Caden and our family. One thing that we do know is that God has blessed us with a beautiful, happy, silly, easy-going, and super brave little boy. And for that we are eternally grateful.

Here is what Sherry had to say on her Facebook status tonight as she was reflecting on what she was thinking on this night seven years ago:

“Seven years ago tonight I lay awake excited and anxious with so many questions swirling in my mind…would the doctors be right?, would Caden need heart surgery?, just what [exactly] does DiGeorge Syndrome LOOK like?, is it too early for him to be born (at 36 1/2 weeks), and yes even that awful question of whether or not Caden would survive, was in the forefront of my mind. I look back at all Jesus has done and am completely amazed! Even more amazing is realizing how blessed WE are because of my special son! We chose life (and would do so again)!
HAPPY BIRTHDAY PUNKY!!!”

I have to admit that on many occasions I had a very difficult time imagining seeing Caden reach his 1st birthday much less his 3rd, then 4th, and then 5th, and now a 7th birthday!!! God is bigger than anything this child has faced and I continue to be amazed. Caden has endured and continues to endure much in his life. In the past seven years, that sometimes seem like a few days and on other occasions has felt like a few hundred years, Caden has experienced multiple major surgeries. I have a hard time keeping track. The things I can recall off the top of my head are as follows in terms of what would be considered major surgeries:

5 – Open heart surgeries for (IAA Type B, VSD, ASD, Ross Procedure, Pacemaker, oversized PDA, and aortic stenosis)

1 – Heart catheter (went into cardiac arrest during this one and had chest compressions)

3 – Back surgeries to place and adjust VEPTR rods for scoliosis

1 – Stomach surgery for a Nissen Fundoplication and G-tube placement

1 – Neck surgery for a cricopharyngeal myotomy to try to help him swallow

A recent cardiology appointment resulted in no change in Caden’s heart conditions that they are tracking. Praise God that means there will not be another open heart surgery in the very near future. We were nervous going into that appointment given the progression of things reported in the last cardiology clinic visit. We have been told that Caden will need another open heart surgery at some point to replace both his pulmonary and aortic valves. Caden also has to endure back surgeries every six to nine months to adjust the rods in his back.

Caden has also been through countless outpatient surgeries, many required to performed in the  main operating room, and quite a few came with inpatient stays. Some of the procedures included:

• Ear tubes
• sphincter plasty
• EGD with dilation
• Adenoids
• Botox injections of UES and saliva glands

Caden has also been hospitalize on average about one month per year since birth for surgeries mentioned above and many illnesses including:

• RSV (twice in one year)
• Fever of unknown origin (their words not mine)
• Pneumonia caused by H1N1 (22 days in 2009)
• upper respiratory infection
• Chronic pneumonia (twice in 2011)

In addition to the above Caden has on average taken 3-5 tube feedings each day since birth. He has never shown signs of even swallowing his own saliva. He has been on oxygen at night and sometimes during the day for over six months. He gets 3-4 therapy sessions per week and sees more than a half dozen clinics at MUSC regularly in addition to his pediatrician and dentist. He has experienced some developmental delays in speech, fine/gross motor and learning ability. Thank God that Caden is mentally whole and physically capable of functioning as most of the rest of us even of his stamina and strength are a little weak at times. And to think I was worried about his left pinky finger not being able to straighten out. That is still the case today and is such a trivial little thing that I hardly ever notice.

I’ll close with short note and a prayer for Caden. The Happy BIrthday Note to Caden is posted on Daddy Life.

^“14For this reason I kneel before the Father, ¹⁵ from whom every family in heaven and on earth derives its name. ¹⁶ I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, ¹⁷ so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, ¹⁸ may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, ¹⁹and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.²⁰ Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” Ephesians 3:14-21 (NIV)

 

THE HOLY BIBLE, NEW INTERNATIONAL VERSION®, NIV® Copyright © 1973, 1978, 1984, 2011 by Biblica, Inc.™ Used by permission. All rights reserved worldwide.

Okay, it was only a BB Gun, but still, it was a gun. And for a 6 year old kid who we were told might not ever walk if he even survived his first week of life, this is pretty cool and exciting stuff for a dad. And let is not forget that he was in the intensive care unit at the hospital just two weeks ago recovering from back surgery. Check out the details of this action pack day of BB guns, sling shots, and archery over at my Daddy Life blog.

Caden with a Daisy BB Gun

Caden is improving after a very eventful 24 hours. Last night at about 3AM Caden’s O2 sats dropped rapidly and continued to drop until we got him stabilized at about 5AM on 8 liters of oxygen via  a mask. He went to bed earlier in the evening on 1/2 liter of oxygen via nasal cannula and took the dive in the middle of the night. At first it was suspected that he was having a relapse of pneumonia. Once he was stabilized and everyone was able to step back and review current x-rays against older ones it was determined that this was a case of acute Atelectasis. This is a fairly common occurrence in post operative patients where a lung will partially or totally collapse. The treatment was to give him extra oxygen while trying to get Caden’s lung back fully inflated by getting him coughing and breathing deeper. We brought his Hill-Rom Vest in to help him start coughing by vibrating some of the mucus loose in his lungs and airway. He also go up and went to the play room once he was able to get back to a point of using only the nasal cannula again. Tonight he is sleeping comfortably on 2 liters of oxygen via a nasal cannula.

We expect to discharge sometime tomorrow (Saturday). Caden was moved out of the PICU and into to a regular room this evening. He is back on his normal diet of Nestle Compleat (purred chicken dinner) delivered via g-tube three time per day. He has been taken off the telemetry monitoring and has only a pulseoxometer that shows his O2 sats and heart rate (same type monitoring equipment we have at home).

Things are home were a little more challenging that normal because all three of our other boys are coughing and having a hard time sleeping. In addition JJ in particular wanted to see Caden so bad today but was not allowed due to his own illness and Caden being in the ICU. I did call Sherry and asked her to put Caden on the phone to talk to JJ and Riley after dinner. I was able to have dinner with Riley, JJ, and Levi before leading our Growing Kids God’s Way class through a lesson on the Touch Points of Love tonight. I know, I know, we probably should have cancelled class, but Sherry and I wanted to get past that lesson since the next chapter is The Father’s Mandate. That next chapter for dads will make for a great follow-on lesson to the new Courageous Movie opening next Friday night. We are meeting our class at the theatre to view the movie together during our normal class time next week. We highly encourage you to support this movie by getting out and to see it next weekend during its opening weekend. This movie is produced by the same guys who did Fireproof and Facing the Giants.

Thank you all for your prayers and kind words via Facebook these past few days. Please continue to pray for:

– Caden’s rapid and complete recovery
– Caden’s protection from illnesses, infections, and complications
– Caden’s comfort and continued self-control.
– Health, understanding and compassion for Riley, JJ and Levi
– Patience for Joe (Grandpa) as he cares for the other three boys
– Continued decrement, humility, and thankfulness for Sherry and me

It is not often that we can say it has been a really good day in the hospital, but this one ranks well above average for sure…even though we are in the ICU. Caden’s surgery was completed in record time and he is doing very well with the recovery process. Praise God! Thank you for interceding on Caden’s behalf!

Caden could be discharged as early as tomorrow. I am cautiously optimistic since a number of different personalities must agree on that move…and getting discharged straight out of an ICU is VERY rare, not unheard of, we have actually done it, but still very rare.

The surgery took all of about 15 minutes even though Caden and the skunk were in the operating room for a little more than two hours. The skunk is Caden’s favorite stuffed animal and the staff was more than willing to let Caden take skunk into the OR and do whatever else he wanted to keep him and everyone else calm. Sherry said they would have probably let him stand on his head if he wanted to. Of course we completely cave on the child centered care approach when the little guy is about to be cut open. That is what I context with a capital “C”. The picture if from a year ago, but still illustrates the scene very well. I think the skunk has been to surgery with Caden three or four times now.

Anyway, the majority of the time spent in there was in preparing Caden and drawing blood for a couple of clinics. Caden’s immunologist asked for a full panel of test to be run on him a few months back, but she is completely fine with waiting until Caden is under anesthesia before trying to draw the blood. The immunology panel requires approximately a dozen different vials of blood to be taken. In addition to that the endocrinologist wanted their share of blood and the surgery team needs a few vials as well. So Caden became a little pin cushion after drifting off into LaLa land this morning.  The good news is that they gave Caden some Ativan through his g-tube to help him relax before taking him back to the OR. Once in the OR the anesthesiologist pulled out the mask that delivers the funny gas. Previously Caden has NOT like this part, but according to the doctor, this time Caden took the mask out of the doctor’s hand and placed it on his own face and went off to sleep without any protest at all.

Caden was admitted to the PICU (Pediatric Intensive Care Unit) after leaving the recovery room. This was NOT the plan. We landed in the PICU because there were no available bed in the fancy new step-down unit. The doctors had a choice to go to a regular room or to send Caden to the PICU. Caden’s orthopedic surgeon is openly admits that he prefers the conservative approach to post-op treatment with all of his patients, but especially with a medically complex little kid like Caden. The PICU is not nearly as bad as we expected this time. Normally there are no accommodations for sleeping at the bedside because most of the beds are only separated by a curtain. And when any patient gets to a point of requiring critical bedside treatment the families for all the other kids get escorted out of the unit. However, this unit is all but a ghost town today. Praise God for that as well! How much better news could you read today than that. The number of critically ill kids at MUSC is as low as I have ever seen it and the only reason we are even in the unit is because there was no room available. So with the unit being nearly empty we got put into what could be described as the penthouse suite of ICU rooms. We are directly above the room that Caden spent his first Christmas in almost 7 years ago. We have a wonderful view from this corner room and it has a couch that I can sleep on. AND…If another kids goes critical the staff can simply close the door to this room and leave me in here with Caden…and the skunk. 🙂

We had a visit from Andy one of the pastors at the church we have been attending regularly for several months now. That was a nice surprise and greatly appreciated. We very seldom get visitors beyond that really weird looking doctor with the very large red nose. He is our favorite doctor in the whole world even though Caden is not one of his patients. I feel like I am more a patent of Dr. Turner than any of the kids on the floor. He cares for us in a very special way by delivering belly laughs and smiles during some of our family’s toughest times. His friendship is such a blessing to me and our entire family.

Prayer Requests

Please pray for:

– Caden’s rapid and complete recovery
– Caden’s protection from illnesses, infections, and complications
– Caden’s comfort and continued self-control.
– Understanding and compassion for Riley, JJ and Levi
– Patience for Joe (Grandpa) as he cares for the other three boys solo for a few hours each day*
– Continued decrement, humility, and thankfulness for Sherry and me

* Because Caden is in the ICU Sherry will not be able to bring any of the boys up to see Caden or to spend the day. Siblings and visitors under age 12 are not allowed in the PICU.