Caden’s Page

Caden’s grandma went on to be with the Lord this weekend.  Sherry’s mom was as loving and giving of a person as you will ever meet. She loved God, her husband, her children and her grandchildren with all of her heart.  Grandma and Grandpa’s nearly 31 years of marriage defined love and commitment in terms that few people have the privilege of even witnessing in this day and time much less experiencing. Grandma will be missed by many, and especially by her boys in the Osborne house.

Services for Darla Jean Pack will be held at the Parks Funeral Home in Summerville on Tuesday March 22 at 3pm.  The family will be available at the same location for visitation tonight (Monday 21st) from 6-8pm.

Caden Update:

Caden has healed from the pneumonia to the point that he no longer requires oxygen. PRAISE GOD!!!

Caden has been home from the hospital for a few days now. Just before discharge we had a visit from a very strange looking doctor from the MUSC Pediatric Neurology department. At first glance you might think someone from the psych ward stole a lab coat and was playing pranks.  This guy had glasses as thick as Coke bottles and a giant round red nose.  This was no escaped psych ward patient, but was a very skilled doctor with the best bedside manner on the planet. He delivered belly laughs and smiles for everyone.  He delivered exactly what our family needed after such a long hard week.  As strange as he may look to others, he is a very familiar face to our family.  Dr. Rusty Turner is a dear friend to our family and stops by to visit us nearly every time Caden is hospitalized and emails me with encouraging words even when he can’t stop by and visit.  We met him years ago through our mutual friends Gary and Anne Marie Ezzo and have been blessed by Rusty’s gentle spirit and wonderful humor ever since. While Caden has never officially been under Dr. Turner’s care as a patient, his lab coat is the one we most enjoy coming through the door while at MUSC.

Caden’s discharge from the hospital was not without some drama. At one point on Tuesday Caden was in danger of be transferred to the ICU and then 12 hours later the doctors were recommending discharge.  What happened was that a couple of blood tests on Monday and then again on Tuesday morning came back with high CO2 levels.  That meant that Caden was not breathing off the CO2 form his lungs and one doctor in particular who had not even seen Caden in person was recommending that he be put on a BiPap machine to help bring down the CO2 levels. The BiPap can only be administered in a higher level unit like and ICU or a step down unit.  The step down unit was full so Caden was in danger of being transferred to the ICU to get this treatment. However, he was sitting up in the bed laughing and playing and looked nothing like he had high CO2 levels.  Early Tuesday morning I had been told that they test were going to test his blood again since his condition seemed to be improving.  By message from the nurse the new blood test was not planned and instead they were making plans to transfer him to the ICU. I asked that the doctors come back to explain why they were doing something different than what they had told me in the morning when nothing with Caden’s condition had changed for the worse. Without getting into the nasty details, I’ll just say that they did another blood test that did show Caden’s they changed plans on the BiPap and then did another blood test over night that resulted in their recommendation to discharge Caden.

Caden has been home since Wednesday evening and has been doing well ever since. His last two nights have been rough, but he did get the best two nights sleep on Wednesday and Thursday nights that we have seen in a while.  That meant Sherry and I got better sleep too. 🙂

Sherry’s mom has improved to the point that she has been removed from the respirator and feeding tube. She is still in the ICU, but is waking up and responding to Sherry, her dad, and the nurses.

Praise God and thank you for your continued prayers for Caden and Darla!

Caden was diagnosed with pneumonia during and ER visit yesterday. Caden took a turn for the worse this morning after he got up. Caden got to a point where he was requiring the maximum oxygen that our home concentrator equipment could provide which is 5 liters.  We have oxygen tanks and that can provide higher rates of oxygen, but our tank supplies are limited and intended only for transport purposes.  His fever hit the highest point is had been in three days this morning as well.  Sherry called me at work when she detected that Caden’s symptoms were getting worse.  We decided to take him back to the emergency room immediately rather than wait for the scheduled appointment with the pediatrician in the afternoon. Sherry still had to take Levi in to the pediatrician in the afternoon due to congestion, fever, and vomiting.  I left work to take Caden to the ER so that Sherry and I could divide and concur with the sick kids.

Once at the hospital the doctors gave Caden an IV and another dose of Rocephin.  Then they also added a Vancomycin which is an antibiotic that can only be given via IV. Caden was transferred to a room on the 7th floor of the Children’s hospital at about 4:30 PM today. We will likely be here until his condition is improving and can be managed with oral (g-tube) delivered medications and less oxygen than he is currently requiring.

Please keep Caden and his grandma in your prayers.  Sherry’s mom is in an ICU unit in a different hospital in North Charleston. She is currently on a respirator due to aspiration pneumonia.

Caden was taken to the MUSC emergency room today due to low oxygen saturation (SAT), high fever, high heart rate, and increased secretions.  We had to put him on oxygen last night and ended up increasing the amount to 3 liters of oxygen by morning.  We called the pulmonary doctor on call before taking him to MUSC to see if they could grease the skids and get us a CT scan ordered.  We had just seen the pulmonary clinic on Thursday and knew they wanted a CT scan the next time Caden got ill and required oxygen.

The CT scan was performed and Caden was diagnosed with pneumonia.   They gave him Rocephin antibiotic shots and then released him at my request. The doctors wanted him admitted “for observation”, but with all that Sherry is dealing with regarding her mom (in critical care unit and on a respirator) I told the docs that unless they felt like Caden needed to be near an ICU and/or a respirator then I would rather we care for him at home. I explained the situation with Sherry’s mom and they agreed with my request especially since we already have a O2 SAT meter, Oxygen concentrator and O2 tanks for transport. We will follow up with Caden’s pediatrician tomorrow and return to MUSC to be admitted for IV antibiotics if Caden’s condition becomes worse.

The picture was taken while in the ER.  I had to feed Caden while there and needed to get his feeding tube bag high enough for gravity to help get the food into his g-tube.  The only IV pole the MUSC ER nurse could find was not tall enough so I rigged the bag by hanging it on the frame of some wall art. At home we have nails and hooks strategically placed throughout the house so Caden can get a tube feed while laying in bed, playing, or sitting at the table. This country boy engineering fascinated the MUSC ER nurses.  They went back to the nurses station and nearly every nurse in the place came by to see my handy work. It was fun to entertain the ER staff with such little effort.

Nana is staying around another day to help out since Levi is also sick and needs to go to the doctor tomorrow.  Caden is resting pretty good tonight, much better than last night. Sherry, Nana, and/or I was up with Caden at least once per hour last night suctioning, adjusting oxygen, and giving medication to bring down fever. I did most of the work so Sherry and Nana allowed me to sleep in a little this morning.

Caden has been off oxygen for about a week and a half and has been doing pretty good over all.  The picture on the right shows how much he enjoys being a big brother.  He took Levi (9 months this week) for a ride on the slide at the local park this past week.

I have been asked by a few people how things are going with Caden and our family in recent weeks and then I realized that I have not posted an update lately. Things have been busy.  Sherry’s mom has been in the hospital for 2 1/2 weeks and I have had to travel twice for work during that time.  I left work on Friday February 4th and headed over to Sherry’s parent’s house.  When I arrived Caden was watching his grandma being wheeled to the ambulance.  He had big crocodile tears streaming down his face and crying about Grandma going in the ambulance.  Grandma originally went into the hospital for dehydration and a urinary track infection.  She has sense begun to have seizures and just this evening had to be transferred into the ICU.  While the ICU move was not emergent, she has been pretty much unresponsive to Sherry or the boys for over a week now. The move to the ICU is to provide closer monitoring of her condition. The doctors have keep her medicated pretty well to minimize the seizures.

Caden’s six month cardiology visit was this past week. Sherry and I talked briefing about me taking Caden to cardiology solo.  I am glad we did not take that path.  What we learned is that Caden’s heart has been working a little hard and has grown larger than it should be.  Both of Caden’s major aerial valves are leaking and the root of his aortic valve is large.  The enlarges aortic root is the biggest concern right now.  If nothing is done to treat this condition then Caden’s next open-heart surgery could come sooner than later.  Original estimates for his next major heart surgery was guessed to come at 10-12 years of age.  The enlarged aortic root could cause the surgery to happen in the next two years and will likely require that the aortic valve be replaced.  This means that the Ross Procedure performed in September 2008 will end up causing Caden to have foreign tissue or mechanical valves on his aortic and pulmonary arteries.  The treatment to slow down the need for the surgery is to put Caden on medication that can lower his blood pressure to the lowest level that is safe for him to minimize pressure on the aortic root.  This is a balancing act because low blood pressure can affect stamina and Caden already has low stamina. The cardiologist want to use a beta-blocker or ACE inhibitor to lower Caden’s blood pressure. We asked to consider this treatment and then come back in a few weeks with any questions.  That is where we stand at this point.

We will keep you posted when we know more.  In the meantime, Caden seems to be healing well form his latest scoliosis surgery.  He does still have pain, but it is mostly manageable with over the counter drugs.

Thank you for keeping Caden and our family in your prayers!

Caden was discharged from the hospital this evening. He is still on about 2.0 liters of oxygen.  The oxygen is not related to the surgical procedure at all.  We had Caden on oxygen before the surgery.  Caden will see the infectious disease department again next week to see what might be the next step in dealing with the persistent sinus infections.  We appreciate your prayers and ask that you continue to pray for Caden’s recovery.  He is still in a good bit  of pain and having a sinus bug on top of the surgery does not make the recovery any easier.

Caden went to the PICU after surgery yesterday. This was mostly precautionary.  Sherry and I did not know going into this scoliosis VEPTR Rod process would require an ICU stay every time Caden has an adjustment.  Come to find out this is the norm for this particular surgeon even when the surgery is less invasive. A precautionary ICU stay might not be too bad, but most people we run into at MUSC who don’t know Caden are scared of him.  The last time we were in the PICU the doctors in the unit would hardly lift a finger without consulting cardiology.  Cardiology was not concerned about Caden’s heart because it has been “repaired”. So we end up in the triangle of finger pointing between the PICU staff, cardiology, and the surgeon who put Caden in the PICU.  One is scared to do anything, the other is not concerned, and the last is just doing what he thinks is best for the patient. That translated into four nurses in five hours yesterday and caused Caden some unnecessary pain through the night…that was NOT best for the patient.

The lead resident for orthopedics came around this morning and asked how the night went.  I told him that Caden seemed to be in pain, but the nurse kept telling me that he only needed morphine on the surgery day  and was getting it as often as he could get it per the doctor’s orders.  The resident told me that Caden should have been getting Tylenol with Codeine as his primary pain medicine and Morphine as the breakthrough medicine.  He suspected that the orders got lost in the shuffle last night. The nurses in the PICU had a shift change at 7pm right after the surgeon came by and then Caden got transferred.  Then the nurses on the floor changed at midnight. I didn’t notice pain issues with Caden until we got to the fourth nurse and she only knew what had been pasted down to her.  Now it is almost 8AM and we are going through another shift change.  We have not met his new nurse what came on at 7AM, but I raised enough of a stink to get the Tylenol with Codeine and Morphine brought in by another nurse. I feel like I am in the middle of an episode of the Three Stooges.

It seems like we have had some kind a communication issue with the majority of our recent inpatient visits at MUSC.  This place does pretty good as long as you get in one unit and stay settled with the same care team for a few days.  Stay through a weekend and/or move between units  and you are in for a ride.  Especially with a complex kid like Caden and a paranoid staff.

Surgery is schedule at 6:15AM to repair Caden’s VETR Rods.  Caden has been experiencing significant pain related to the spot on his lower back near the waist line. (See photo)  The surgeon will replace the brace attached to Caden’s pelvis and adjust the rods as much as possible based on Caden growth since the rods were places on September 28, 2010.

Prayer Request

We would appreciate your prayers for Caden tonight and tomorrow.  Please pray for:

• Doctors and nurses who will work with Caden
• Successful surgical repair to eliminate pain
• Rapid recovery
• Protection from infections
• Discernment for me and Sherry

I will be updating status in near real time on Caden’s progress via Twitter and Facebook.

Caden has been experiencing some pain with a piece of titanium hardware that is protruding against his skin from the inside.  Caden had a follow up visit with the orthopedic surgeon this past week.  The surgeon originally wanted to perform Caden’s next surgery (rod adjustment) at about the six month mark from his his original surgery.  That would have been near the end of March.  Once he saw the spot on Caden’s back where the hardware is nearly poking through the skin the surgeon said we need to move the surgery date up. He is mostly booked up for the month of January but wants Caden in for his next surgery no later than the beginning of February. Sherry is going to call them back this week to see if we can get in sooner than later because the spot seems to get worse by the day.  We are really concerned about the idea that titanium parts could poke through Caden’s skin any day.  The hospital stay is expected to only last as long as it takes for Caden to recover from the anesthesia. We hope that will be only one overnight stay.  UPDATE: Surgery date set for January 18, 2011.

Infectious Disease Update

Caden recently had a follow up visit with the Department of Infectious Disease.  It was great timing as Caden had just reached our threshold for intervention (with antibiotics) due to increased symptoms.  Caden had been having increased secretions, he was lying around during the day, and his oxygen SATs were dropping.  What we normally look for to trigger a trip to the doctor is for his SATs to be below 94 awake, below 90 asleep, or to have a high fever that cannot be controlled with easily with Tylenol and/or Motrin.   There are more serious conditions that have led to ER visits or even ambulance rides, but those indicators are not as subtle as indicators that lead us to check for low SATs.  Now we have the added complexities associated with pain management caused by the recent scoliosis surgery.  The pain medications can/do often suppress fevers so detecting illness is a little more difficult. The day after the infectious disease visit Caden began having a high fever in addition to his other symptoms even with the frequent pain meds.

The doctor from the clinic touched a nerve with Sherry and me.  I am pretty sure the doc misinterpreted our reason for going to the Infectious Disease clinic in the first place.  He was suggesting that we might want to let Caden go farther before intervening with antibiotics.  I assured him that we have a very good track record of discerning when Caden needs antibiotics. While we want to reduce the need for antibiotics it is not because we are opposed to the use of them when needed.  In the end we had to explain that we were interested in finding ways to help Caden avoid the need for antibiotics, but once he needs antibiotics we are not interested in making him suffer unnecessarily simply to avoid using antibiotics.  In the end the doctor agreed with my theory that Caden’s upper airway anatomy is likely the cause of most of the sinus infections.  Caden does not swallow, but does chew a lot creating secretions, and has a sub-mucus cleft pallet that creates a path of least resistance up through his sinus cavity. That all adds up to every germ that goes in his mouth pretty much gets sampled by his sinus cavity before his saliva runs out his nose.  I explained that we have had botox injections into his saliva glands to try an minimize the amount of secretions, but the procedure was unsuccessful.  We are now trying “The Vest” by Hill-Rom prescribed by Caden’s pediatrician to help keep Caden’s airway clear.  So far the health insurance has not approved Caden for The Vest so we may be sending it back if insurance does not get on board.  We don’t have the approximately $16K needed to pay for the machine outright.