Caden’s Page

Caden’s back surgery has been rescheduled for this coming Thursday, September 22, 2011. This will be an adjustment of the VEPTR rods were placed in Caden’s back during a surgery performed a year ago next week to treat scoliosis. The surgery this week is a major surgery performed in the MUSC adult hospital 4th floor main operating room area.  Caden will likely spend at least 2-3 nights inpatient in the MUSC Children’s Hospital recovering from this surgery.

Caden saw his pulmonary doctor late last week and was cleared of the pneumonia that postponed this surgery from happening at the end of August. The pulmonologist has cleared Caden to have orthopedics surgery this week. We will not know the exact time of the surgery until sometime Wednesday.  We expect to be the first case on Thursday morning. They normally like to get Caden in early.

Please pray for Caden to have rapid healing and protection from infections and illness. I’ll be updating this blog regularly during Caden’s hospitalization.

I ran into an old friend and co-worker at lunch this week. We both work for the same division of our organization but rarely get to see each other due to tasking.  He follows Caden’s Page via the email updates and asked me how things were going with Caden.  As a result of his question I remembered I had not posted an update since Caden’s discharge from the hospital on Sunday. (Thanks Eddie!)

Caden was discharged from MUSC on Sunday afternoon after receiving one last dose of Rocephin. He got five doses during his stay at MUSC between Wednesday and Sunday. Caden has been free of fevers since Thursday afternoon of last week. Even so we were a little hesitant to get discharged because Caden was showing increased secretions and massive diarrhea on Saturday night and Sunday morning. That has all since come under control. We suspect the diarrhea was from the strong antibiotic.  He is on an oral (g-tube delivered) antibiotic now, but there are no obvious adverse side affects even though this is an antibiotic that is normally used only in adults.

Once Caden is showing signs of being completely healed from the pneumonia (probably 3 weeks plus) we will schedule the VEPTR rod adjustment surgery to treat the scoliosis. We expect to be inpatient for about 2-3 nights as a result of that one when it happens.

Popcorn Sales – Cub Scouts

You may remember me mentioning that we allowing Caden to participate in Cub Scouts this year. Riley is in his second year and both of the boys are selling popcorn to help them earn their own way through the organization. They both would love your support in purchasing popcorn via the online ordering system. You will have your popcorn delivered directly to you if you order from the web site.  Below you will find links to each boy’s sale pages. Either or both would appreciate your support.

Caden’s Popcorn Sales Information
Caden’s Scout ID: 15204364
Link to Caden’s Sales Page

Riley’s Popcorn Sales Information
Riley’s Scout ID: 15184283
Link to Riley’s Sales Page

Thanks for your prayers and support of our family!

Caden is on the mend. The Pneumonia is on the run. Caden has been free from fever for two days and has been able to go without oxygen for a few hours yesterday and today. The plan it to give Caden one more day of IV antibiotics and then switch him to oral antibiotics (via g-tube for Caden). We have made it very clear to all doctors involved that we are very comfortable managing Caden’s care at home once he is switched off the IV antibiotics. Most of the care team agrees with us, but there a couple of holdouts. They are unfortunately the ones who must write to discharge orders. At this point the worse case scenario is that we stay until Monday.

Thank you all for your continued prayers for Caden and our family. Sherry and I have been taking turns spending time with the other boys as they are craving attention. JJ in particular has been asking to go and do. Tonight he wanted to come to the hospital with me. He said, “Daddy, I can find a place to sleep. Maybe I could sleep on the couch in Caden’s room.” I told him that is where I sleep and he said, “I could sleep beside you on the couch.” I had to break the news that little brothers were not allowed to spend the night..otherwise I would have been tempted to let him share the couch with me. He is so stinking cute and he loves his family very much.  Riley spent the day with Caden and Mommy at the hospital and absolutely loved his time with them. They played in the MUSC Children’s Hospital Atrium and watched a couple of movies that they had not seen.

Prayer Requests

– Caden’s rapid and complete recovery
– Caden’s protection from other illnesses and complications
– Caden’s comfort and continued self-control. He is doing awesome!
– Understanding and compassion for Riley, JJ and Levi
- Decrement, humility, and thankfulness for Sherry and me as we deal with the staff at MUSC
– Doctors to have the information, knowledge and wisdom required to choose the correct treatment for Caden

Caden is overall about the same as when he was admitted. He is still having fever and he is still having trouble with his tube feedings. The big issue today was to investigate the type of pneumonia. As mentioned yesterday there was a concern by at least one doctor that the pneumonia might be outside the lung tissue (around the lungs). The pulmonary team came by to consult today and reiterated the same concern. If there was significant fluid around the lungs then we would need to either battle this until it went away which take months or we could have a drain tube placed in Caden’s chest to get the fluids off more immediately and directly. Neither is desirable, but the drain tube would be the most likely course since Caden needs to get well to be able to get other sork down like the back surgery. The pulmonologist ordered an ultrasound of the lungs to get a better look at the fluid pocket. The ultrasound resulted in nothing being found and the pulmonologist never came back so we are not sure what they are thinking now. It seems the x-rays are showing something that the ultrasound should have been able to detect and it was not able to. Here is what Sherry posted to Facebook during and right after the ultrasound:

“Caden is receiving an ultrasound of his chest because the pulmonologist says he has pockets of fluid trapped in his left lung. Hum. ultrasound done and the tech couldn’t find any fluid….wonder what’s next?!”

Regardless of what type of pneumonia Caden has, Sherry and I agree that the current course of treatment has not yet yielded any significant visible results. The fevers are actually a little more frequent and higher than before he was admitted so we expect to see a different approach tomorrow morning. If the doctors don’t bring up new ideas then you can be assured I will. 😉 The attending is a very nice lady that worked with Caden back in 2009 during one of his three hospitalizations for pneumonia as a result of H1N1.

Caden’s normal pulmonologist who we love  very much is not on rounds this week in the hospital. Here are a few lines from an email I got back from Caden’s pulmonologist regarding this pneumonia and plan for the back surgery:

Regardless of the kind of pneumonia or where it is, he should probably have his surgery delayed for several weeks. I’m glad this showed before the procedure rather than making him really sick afterwards.

Sherry and I both give a big AMEN to that last sentence. Having something like pneumoina crop up during a stay for orthopedic surgery is what makes a hospital visit even more crazy. Determining the cause of a high fever right after a big surgery can be very difficult to sort out sometimes.

Prayer Requests

– Caden’s rapid and complete recovery
– Caden’s protection from other illnesses and complications
– Caden’s comfort and continued self-control. He has been such a great sport with the nurses today.
– Understanding and compassion for Riley, JJ and Levi
- Decrement, humility, and thankfulness for Sherry and me as we deal with the staff at MUSC
– Doctors to have the information, knowledge and wisdom required to choose the correct treatment for Caden

Caden was scheduled for back surgery tomorrow morning. We cancelled the surgery due to Caden being sick. He was diagnosed with pneumonia last Monday August 15th and was actually on the mend until Wednesday of this week.  He had gotten to the point over the weekend where he could be without oxygen during the day with his SATS holding as high as 96-98 at times. Then this morning he got up with a fever, was not tolerating his tube feeding, and required oxygen all the way through the morning. Sherry and I agreed that there was no way we could even entertain surgery with him in this condition. Since Caden was on his 9th day of antibiotic the new symptoms warranted a trip back to the pediatrician. We expected to possibly get a chest xray and maybe go back to Rocephin injections for a few days. Instead Caden’s pediatrician said he thought it would be best to have Caden admitted.

It was not like this instance of pneumonia was/is more serious than the last. The rational for admitting Caden was more of a conservative approach to treating this incidence of pneumonia. We have certainly cared for Caden at home when he was in worse shape before. Caden’s rapid return to symptoms combined with the fact he was already on a pretty good antibiotic caused the doctor to consider the hospitalization. We were also facing a slim possibility of a hurricane strick on the South Carolina coast from Irene. This added concern that if we had to evacuate we could find ourselves in a very complex position trying to get Rocephin injections from a hospital or doctor that did not know Caden. Even staying in the area would likely cause us to get daily Rocephin shots through the weekend to get Caden turned in the right direction. The hurricane had a very high likelihood of missing SC all together. We may still get some heavy thunderstorms from rain bands, but the brunt of the hurricane will remain at sea until it is well past SC. Sherry called me at work and had the doctor talk things out with me and we all agreed that hospitalization might be the best choice this time.

At MUSC Children’s Hospital

So Sherry took Caden down to the ER and they agreed he needed to be admitted. This is always an adventure for us because we rarely get the same doctors and only occasionally get a familiar nurse for more than a night or two. Most of the doctors running the show on nights and weekends are residents. God bless them, but way too many are quite full of themselves. This visit has been no exception so far. I have already had the senior resident for the night come in and tell me how things were going to roll and she did not seem very happy with me asking hard questions. My favorite question is “why?” and my most despised answer is “because that is our protocol” or “that is just how we do things”. Hopefully you get the picture.

(rant alert)

Here is the problem with that philosophy. Protocol and normal methods work best on more normal/average kids. Caden is far from normal. He is a very medically complex child. The doctor said that she was going to increase Caden’s IV fluids. I asked why. She said because she wanted to make sure he was getting enough fluids. She siad they had no way of  knowing how much fluid kids get and that kids who are working harder to breathe use more fluids. I then told her that I could tell her exactly how much fluid Caden had taken in today. I told her that given the fact that Caden is exclusively tube fed I know that once he finished the feeding hanging over her head he would have had approximately 1200 milliliters of free water. The formula he gets is 250 ml per can (6 cans per day) and the free water content is a little over 80%. (6×250)*0.8=1200  Add that to the 430 ml of IV fluids Caden received in the past three hours and that comes out to 1630 ml of fluids today which is well above his normal intake which was calculated by a nutritionist here at MUSC. She then said…well when kids get sick they can get dehydrated because they are working harder to breath, etc. I told her that I understood, but Caden has only been symptomatic for the past 15 hours and he has already been given 430 ml of extra fluids and he was being given 10 ml per hour to keep the IV open. So by this time tomorrow he will have had 50% more fluids than he normally gets in a day. I then asked if we could just wait to make the adjustment. She still protested and tried to justify her recommendation. I asked if there was any objective evidence that brought her to this recommendation or was it just protocol. I did not tell her this part, but she was the sixth doctor to see Caden today and she was the first one to mention any potential need for increased fluids. I told her that the IV was placed for drawing blood and delivering the Rocephin. I agreed with keeping an open IV while inpatient because he would need more IV meds. I asked if Caden’s blood work showed any evidence that he needed fluids. She said no. She then said that this was just how they do things with kids who are working harder to breathe and have a high heart rate. I reminder her that Caden was eating and that he was not breathing like this all day. He was only showing signs of discomfort during his feeding. And oh by the way, he ALWAYS has a high heart rate when he eats, ALWAYS. His heart rate runs between 150-160 when he eats and slowly drops back down to the low 100s about an hour after eating. I also reminded her that Caden had been complaining of pain in is arm (above the IV site) from the time they started the IV fluids at such a high rate until the time they finally turned them down to 10ml per hour. Finally she agreed to wait until they had some output measurements to “determine” if he was peeing enough. She then left in a huff.

(end rant)

Why is common sense and objective review of the patient’s condition so often trumped by PROTOCOL?

The Night Goes On

Caden finally got to sleep at about 10:30 tonight. He is now resting well and his fever went way with a single dose of Tylenol. I believe we are finally settled in for the night. He is only on 1 liter of oxygen and his SATs are hanging at 95-97…which is great…especially for a kid that was just admitted to the hospital for pneumonia.

Prayer Requests

Please pray for:

– Caden’s rapid and complete recovery
– Caden’s protection from other illnesses and complications
– Caden’s comfort and continued self-control. He has been such a great sport with the nurses today.
– Understanding and compassion for Riley, JJ and Levi
- Decrement, humility, and thankfulness for Sherry and me as we deal with the staff at MUSC

Caden was diagnosed with pneumonia again on Monday. He had only been off oxygen during the day for a few weeks after recovering from the June 21st diagnosis of pneumonia. The photo of the x-ray on the right was taken after the fall he and Sherry had at the aquarium during the week of the GFI Family Conference. The rods in his back sort of pop out, but if you look carefully at the lung areas you will see that the right lung is very clear and the left lung is definitely not clear.  (this picture is a view from behind Caden) The picture confirms where the doctors have been hearing the pneumonia (crackling sounds) when listening to Caden with a stethoscope.

Caden was also hospitalized back in March 2011 with pneumonia…in the lower left lung. That one was a bit of a scare as we almost took an ambulance ride to the hospital that time.

Surgery Pending…

Caden is scheduled for a VEPTR rod adjustment surgery this coming Thursday August 25th…if he is well enough from the pneumonia. I believe he will be well enough since his need for oxygen during the day is already decreasing. Sherry said she was able to drop him down to one liter today which is a very good sign. Praise God!

A New Cub Scout

Caden will become a Tiger Cub with our local Cub Scout troop 458 in a few weeks. I took Caden on a date to the scout store to get a uniform a few weeks ago. He was beaming with excitement to get his uniform and know he will be doing something with Riley this fall. I will be Caden’s den leader (got my uniform also) and Sherry will be attending meetings with Riley in his Bear Cub den.

Some of you may be wondering why we do scouts and I will be sharing that in detail over on Daddy Life in the coming weeks.  Daddy Life is a site I have created to reach out and encourage, equip, and challenge dads. I have posted seven weekly podcast episodes so far which are available in iTunes or directly from the Daddy Life web site. The site is growing but I could use all the help I can get promoting it. Eventually I will be releasing some eBooks and videos on technology safety (some free and some for sale). I encourage you to click the “Like It” buttons found on each post to share on Facebook, tweet it on Twitter, and/or link to it from your own blogs and web sites. Let me know if you add a link so I can link back to you.

More Fun Pictures with Captions

Riley's first climb to the top of a climbing wall

JJ holding a real live alligator - Edisto Island Serpintarium

Riley holds a snake while Caden pets it - Edisto Island Serpintarium

Caden continues to improve.  Caden had remained on oxygen 24/7 since June 21st until this past Friday July 29th. While Caden’s lungs sounded clear, his lungs were slow to get back to the point where he could SAT 94 + without oxygen when awake.  It still takes until late morning to get off the oxygen, but he is making great progress. Caden is still on oxygen throughout the night and will be for the foreseeable future.

Please remember to pray for Caden. His next back surgery is schedule for August 25th. This surgery will require at least two nights in the hospital at MUSC Children’s.

Please check out an article I posted comparing the subject of Parenting a Special Needs Child with the story of Jesus in John 4 at the well with the Samaritan woman.  It is titled We Don’t Always Get What We Ask For and it can be found on my Daddy Life blog.

I started the Daddy Life blog a few months ago and have since added a weekly podcast (available on iTunes). Please help share the word about the Daddy Life blog.  I hope it can evolve into somewhat of a Mom’s Notes like place for parents (dads in particular) who are interested in parenting their children at a higher standard than what the world promotes as normal and acceptable. Please click the “Like”, Facebook, or Twitter buttons to help share DaddyLife.net with your friends.  Thank You!!!

Caden was diagnosed with pneumonia on June 21st.  He was running a 104.5 fever that day and his SATs were down far enough to require oxygen all day.  We took him in so the pediatrician could listen to him and they referred Caden to MUSC for a chest x-ray. The x-ray confirmed pneumonia in the lower left lung.  We went through four days of Rocephin injections and then went onto Vantin for 21 days.  We will finish off the Vantin this week.  Caden has already seen the pediatrician for a follow up and they said his lungs sound clear. However Caden is still sating 89-90 without oxygen so he will be on the O’s until he can keep his SATs up with the oxygen.

We checked Caden into the church nursery for the first time in a LONG time today and not without incident.  A lady followed us into the WonByOne (Special Needs) room and asked me…with a bit of an urgent tone, “why is he on oxygen?”  I explained basically by saying what I said in the paragraph above.  She seemed a little uncomfortable so I added some other information about Caden to comfort her with our level of understanding about his condition and our judgement to bring a child out in public on an oxygen tank. I sort of did the shock and awe version of Caden’s overall condition to let her know that oxygen is one of the least of this kid’s issues. (i.e., can’t swallow, multiple open hear surgeries, multiple back surgeries due to scoliosis, surgery on his throat, etc, etc) She got one of those dear in the headlights, wide-eyed “OH” looks on her face and said she was just curious because she is a nurse member of the emergency response team.  She told the room coordinator to call her if she was needed. I am standing there with on eye-brow higher than the other as she departed.

I realized that I never posted what happened with the sleep study back in April. The sleep study alerted us to the fact that Caden was dropping his SATs in the late night or early morning hours. The pulmonologist called us after the sleep study and said Caden needed to be on oxygen at night going forward. We were a little skeptical at the time that and thought it was related to a sinus bug he had been battling since earlier in the week leading up to the sleep study. We verified the sleep study findings by running Caden on the pulse oximeter all night for a few nights in a row following the pulmonologist’s call.  Caden was dropping down as low as the high 70s without oxygen..until he got suctioned. Caden has been on oxygen every night since and remains on the O2 until after his first tube feeding of the day.

In case you are wondering, this is what Caden looked like during the sleep study.

I may have mentioned “The Vest” a few months back.  It turns out that it is a great treatment for pneumonia. The device was developed by Hill-Rom to treat Cystic Fibrosis (CF) patients. Caden does not have CF, but his condition has become another great target for this device.  The device is an air pump that inflates a vest worn by the patient.  Once the vest is inflated the air pump begins to pulsate the pressure in the vest to create vibrations in the lugs to shake loose mucus.  This makes it much easier for the patient to cough up the stuff from their lungs and get back to breathing more freely.  Caden is riding “The Vest” for at least 40 minutes per day.  This things are in such high demand we were ask to bring our own if we had it when Caden was admitted to MUSC back in March for pneumonia. Here is a picture of Caden getting his vest treatment.

We have scheduled Caden’s next surgery.  He will have another orthopedic surgery to adjust the VEPTR rods in his back on August 25th.  We expect 2-3 days in the hospital for this one.  Normally kids only spend one night inpatient for this procedure, but Caden’s orthopedic surgery plays things a little more cautiously with Caden.

Caden lost pulled another tooth tonight. His has now pulled two of his teeth without assistance.  I as so proud of him and Sherry was so thankful.  She can’t stand to even watch the process of pulling a tooth.  I posted a poll on my new blog Daddy Life asking how much a kids should get for a tooth he pulled all by himself.  Drop over there to vote in the poll and check out the other information the site has to offer. I have produced two podcast episodes so far and will try to do one per week moving froward.  You can subscribe to the free podcast on iTunes or download the mp3 files from DaddyLife.net.

Thank you for following Caden’s progress.  Your continued prayers for Caden and our family are greatly appreciated.

Caden and the rest of the Ozz family have been on the move.  We spent this past weekend in Fort Worth, TX.  Our primary reason for the trip was to attend a memorial celebration service for Sherry’s mom.  Most of Sherry’s family was unable to attend the funeral service in Summerville, SC last month so Sherry’s Dad, Aunts, and Uncle arranged a service in the Dallas/Forth Worth area (Arlington to be exact) so that others could gather and celebrate the life of Darla Pack.

Sherry and I flew our entire crew commercial from Charleston, SC to Dallas, TX with a layover (each direction) in Atlanta and that was no small task.  The TSA interaction was way less of hassle than I expected. Caden did not even set off the alarm on the metal detector and they even let him keep his shoes and braces on when he went through in Dallas on the way home. I thought taking a case of canned formula, suction, feeding pump, and medications (with cold pack)  for Caden would cause some major delays but it was not that bad…even though I did get my first “Pat Down”. They said it was because of the amount of liquid I was declaring that casued the pat down search…hands ALL the way up the thigh and in the waste band of my pants. As for the plane rides we were the very first ones to board each flight and the very last ones to get off.  We had a ton of medical gear for Caden and each of the three older boys pulled their own carry-on bag.  We had to dodge the cleaning crew at the end of a couple of flights.  The Delta gate agents actually called us by name on one flight so that we could board first.  The one picture that I did not get that I regret was one of the boys following me like ducks all pulling their bags while I pulled one of those folding dollies with Caden’s gear. Sherry brought up the rear with a stroller carrying Levi in his carrier.  It was a very cute sight and all the boys did a great job staying together and not causing too much disruption to the folks around us..except for the giggles and stares that is.

The boys absolutely loved the entire trip but especially the airplane rides, the airports, and the way cool (nicer than ours) mini-van that we rented.  Caden actually cried on the flight home and said, “I don’t want go home. I want stay in HOtel.” While boarding the plane heard home to Charleston in Atlanta on Monday evening Caden poked his head into the cockpit, waved to the pilots and said, “HI!”. The pilot invited him and his brothers into the cockpit.  The flight attendant told me to just proceed to my seat and she would bring them back to their seats later.  A few minutes later I heard some very familiar voices over the airplane’s intercom saying, “Hey Mommy and Daddy.”  All three boys got a turn at the mic giving Sherry and me a good belly laugh to begin our final leg of the trip.

The weekend was not as enjoyable for me personally as I had hoped.  I got another case of the stomach bug thingy that I have had more than a dozen times in the past couple of years.  After testing my digestive track from end to end the doctors have tied it all back to stress and have given me a cocktail of pills to take when the upset stomach is approaching.  One pill prevents my stomach from having spasms and another (Phenergan) keeps me from vomiting.  The combination renders me all but unconscious until the drugs wear off.  I am certain that there a few of Sherry’s family members who were not aware of my condition who think I am the biggest jerk on the planet for sleeping (sitting upright) through the family gathering that took place at Sherry’s cousin’s house on Saturday afternoon/evening.  I ended up on medication for about half of the trip and Sherry did way more driving in the Dallas/Fort Worth area than she expected or desired including a middle of the night 4 AM trip to the airport to drop off her dad so he could catch his flight home. (He flew a different airline at different times than us.) The GPS did not cooperate with her so she called and woke me up so that I could “try” to help here with my Droid GPS.  We finally got it figured out and I think she got back tot he hotel by about 6:30AM Sunday morning.

On a positive note we did get to have some fun on Sunday afternoon.  We went down to the Fort Worth Children’s Museum for a while and then detoured over to the Fort Worth Stock Yards.  I felt like I was back in my element amongst the smell of farm animals, the sound of country music and the steady flow of Stetson hats, pressed jeans, and cowboy snap-pocket shirts. Riley was none too excited about being within eyesight of horses, but the rest of the gang loved it.  We rode the Grapevine Vintage Railroad and bought some cowboy digs for Levi (Hat and boots) and Riley (Hat and a set of toy six shooters).   Here are a few more pictures from the trip.

Yes…that is Levi in Sherry’s lap.  Is he getting big or what?

On the home front Caden has had some big appointments recently and some things have changed with his health.  I’ll save that stuff for another post, but in short I’ll just say that there are no surgeries until the fall.  The only event to speak of will be a sleep study this coming week and maybe that will be a good time for me to write a good medical update blog post.

We greatly thank you all for following us here on Caden’s Page.  Your continued prayers for our family is greatly appreciated.