Caden’s Page

We saw one of our favorite doctors today at MUSC. This is Caden’s ENT (Ear Nose & Throat) doctor. We talked about swallowing mostly. We are still facing a recommendation of a myotomy which is a surgical procedure to cut the muscle tissue of the upper esophageal sphincter (UES). The ENT says that this physical obstruction must be taken care of before Caden can even begin to enter a therapeutic treatment for swallowing. We still plan to visit the multi-discipline clinic in Cincinnati but that will not happen for a couple of months. in the meantime the tube feeds to deliver 100% of Caden’s nourishment and hydration will continue. Sherry’s diligence in tracking Caden’s growth and increasing feeds as necessary have worked great because Caden is growing like your average 4 1/2 year old little boy and he is as happy as they come.

This ENT visit was great timing since Caden has been tugging at his ear and signing hurt. We have been treating him with pain relievers and antibiotic ear drops, but that has not done the trick. That said we got a strong oral (g-tube delivered) antibiotic.

We also ran into one of Caden’s original speech therapists from when he was a baby. She performed most of Caden’s early swallow studies at MUSC. She is retired now but she enjoyed seeing Caden and his brothers. The boys enjoyed the short visit with her too. She is a very sweet lady who put a lot of work into Caden’s development and boosted our confidence in training Caden.

The other big thing of the week for Caden is that we changed out his g0tube button tonight. He has been telling us once in a while that the button hurt. The little balloon that held the old tube in was a little low on water, but it was intact and seems fine. We changed it anyway and even though Caden screamed during the process he was very happy with the new button. We will be taking a road trip soon and wanted to have a fairly fresh button in so we did not get caught in another town needing to replace a busted g-tube button.

In other big news, Riley lost is first tooth this past week only a couple of days after mastering the bicycle without his training wheels. JJ will be 23 months old this Friday and he is still growing at what seems four times the rate of Riley or Caden. They are going to all look like triplets within a year or so.

The ENT procedures went extremely well for Caden on Tuesday.  Caden recovered well and did not even crash for an afternoon nap.  As a matter of fact, his physical therapist forgot that Sherry had canceled for Tuesday afternoon and she showed up on our doorstep at about 4PM.  Caden seemed to be wired for speed so she came on in and worked with him for a while.  By the end of the session she said she had never seen him like this.  It was obviously the drugs.  She said he jumped higher than ever that day, like 12 inches off the floor.

Anyway…back to the ENT stuff.  The ENT doctor came out after he was done and told us that there was a good bit of pus on Caden’s adenoids.  That was encouraging to us because we were not 100% sure about removing the adenoids at first.  He did not think this was the source of the massive amounts of goobers we have been seeing, but he said the irritation could be causing some post nasal drip. The ear tube was replaced with no incident and Caden’s sinuses were cultured.  We forgot to ask when/if we would get results on that culture.

SWALLOWING

While we had the ENT doc cornered we talked about the whole lack of swallowing issue.  He along with everyone else is scratching their heads trying to figure out what to do medically about Caden’s lack of ability to swallow.  He is approaching 5 years old and has never had a meal or a drink by mouth.  That is VERY rare even among 22q11.2 (VCFS/Di George Syndrome) diagnoses.  I took Caden to CHoP (Children’s Hospital of Philadelphia) last year for a second opinion on the scoliosis diagnosis.  While there you may remember that I took the opportunity to also visit their ENT and the 22Q & You clinic.  None of them had any wisdom to offer about the medical side, but they did recommend a swallowing therapy regiment once the medical barriers are overcome. The end of the conversation with the ENT this Tuesday led us back to the same default next step…a miotomy.  This is not necessarily recommended in children, but it seems to be the last thing in the bag of tricks from a medical perspective.

I went back to the standard parent question in these types of situations and asked, “if he were your child, and I know you have kids, what would you do? Is there a place that you would take him to be evaluated? Anywhere on the planet?” The only other thing that he suggested was that we might want to have Caden evaluated by a clinic at the Cincinnati Children’s Hospital.  He trained there years ago and said they have a very extensive program that evaluates the GI track, ENT area, airway, and more.  He made no promises, but recommended we check into it. Right now were are tentatively planning to attend the Growing Kids parenting conference in Cleveland during the weekend of July 17th.  We may drive up and try to coordinate a visit to this clinic Cincinnati on the way home from Cleveland.  There is supposedly a really good zoo there and the Creation Museum is just down the road a few miles inside Kentucky so we have several good reasons to pause in the Cincinnati area.  We are still in the planning stages for this one so keep us in your prayers as we try to sort through all this.

Goobers

The goobers had not gotten any better as of last night.  Caden has required suctioning several times per night and it is slap wearing us out.  I would say that Sherry and I have averaged getting up approximately 4 time per night between mid-night and 7am between the two of us.  I cannot remember the last time either one of us slept for than 3 hours without and interruption.  I know…it is a season.

Caden will go in for outpatient ENT surgery on Tuesday.  We will not know the exact time for Tuesday until Monday afternoon.  Caden will:

1. have an ear tube replaced,
2. get his adenoids removed, and
3. get his sinuses cleaned and cultured.

This trip will be through the ambulatory surgery department for the first time in about two years.  Caden’s last trip in for surgery was his last open heart surgery in September 2008.  That visit corrected problems with his heart that forced us into the main operating room for the simplest procedures like ear tubes over recent years due to concerns for his heart condition.  The heart has been doing great and concern for having a cardiologist and heart surgeon near by are no longer an issue.

Once again I realize posting has been light.  We have been in one of those seasons of rough nights.  Caden’s secretions have been horrible at night.  Sherry and I take turns getting up.  I think we were up a total of 4 times between mid-night and 7 AM last night.  That is not uncommon for us these days and makes for some very low quality/quantity nights of sleep.  You get right in the middle of one of those REM deals and here comes Caden.  The good news is that Caden has finally transitioned out of a crib.  The bad news is that Caden has transitioned out of the crib.  You see we no longer have a guessing game of whether he needs to be suctioned.  Now he can just come tell us…AND he does just that.  There is no way to describe the 90 degree angle view of his little mug I get when he props his chin on his folded arms at about 2:43 AM and says, “AY EY” in his raspy little voice.  The first time it happened was like a scene from a scary movie.  Now it is just getting old.  I am ready for the goobers to be gone for his sake and ours.

I will be updating my Twitter account and Facebook as things progress on Tuesday.  I will try to post an update here on Caden’s Page later in the week.

Here is a quick update on Caden’s condition.  We decided to forgo the ER visit we were contemplating on Sunday.  Caden had a pretty good day on Sunday once he got up and started moving around.  Sherry took him to the pediatrician on Monday and he has been slowing improving.  We are still bunking int he same room with Caden to be there if needed to clear secretions with the goober grabber (suction machine).

There rest of the family is fighting congestion, sneezing, sore throat, and cough.  I went as far as to get a steroid shot this morning to help me make it through a performance of The Thorn tonight.  There was not a single empty seat in the house for tonight’s show.  We are finally over the hump with  Six shows down and six to go.  Our last performance is Saturday afternoon.  If you are going to be in Charleston, SC,  Colorado Springs, CO, or Minneapolis, MN this week then you need to check out http://TheThorn.net for available tickets.

Riley is VERY excited to be able to help cut of my beard on Saturday evening after the last performance of The Thorn. I don’t think anyone in the house likes the breard including me.  Sherry reminded me of Samson and Delilah and said that if I go to sleep with the beard after The Thorn ends then I may not wake up with it.   🙂

Please keep Caden and our family in your prayers.  We are praying for health for the entire family.

Blessings to you and yours!
HanK O

I know it has been a while since we posted.  I want to post more, but I don’t want to bore you with our everday live.  Our life has its unique little struggles but our life goes on.  I have done a lot of thinking in recent days about how our circumstances impact each of our family members and those around us.  I get frequent questions like “how’s Caden?”.  That is a really tough question to answer for me.  Often I want to just say, “go read Caden’s page” because I am so tired of telling much of the same story after 4 1/2 years.  Then I realize the responsibility I have to maintain a Philippians 2:14 attitude.

So to answer the “how’s Caden?” question I will move along in this post to do just that.  Caden has recently been having some rough nights.  He has been running fevers and he has been needing suctioning numerous times throughout the night. Tonight I was sitter here on the couch contemplating this post with Caden sleeping on the floor at my feet.  He has been struggling with a sinus infection combined with an ear infection.  The sounds he was making were loud and familiar to me, but I thought that it might be informative to share the noise with you.  So I recorded a few seconds of him sleeping and you listen to the mp3 below

Caden’s Noisy Sleep

Once the secretions build up enough Caden will begin to cough and will sometime begin to gag.  That is when we have to suction him.  The picture on the right shows the famous suction machine that has traveled everywhere with Caden since birth.   It works much like the little suction that the dentist uses on your mouth.  We just reach back a little farther into Caden’s throat so we can help clear his airway to prevent aspiration on the secretions, goobers, saliva, or whatever else might collect back there.

So what is up with that puddle around the suction machine? That is a small picture into Sherry’s world over the past month.  I was looking at recent pictures and saw the high number of messes that she has had to clean up with I am at work or worse yet while I am on travel to Washington DC.  This mess happened while I was on one of my trips to DC last month.  This was the result of faulty medical supplies.  The feeding pump bag had a hole in it and the formula started flowing freely out the large hole and onto the floor when Sherry was trying to thread/prime the feeding tube.  The other messes on the camera included Josiah’s diaper “accident” in his crib and one picture of the many occasions when Josiah’s breakfast has returned to his tray booster seat tray just a few minutes after eating.  He actually went a week without throwing up and then it happen again this morning and came with a fever too.

As for me, I have been trying to juggle being a husband and father while maintaining my commitment to a small part as a pharisee in The Thorn (Seacoast theatrical presentation of the Gospel of Jesus Christ) while also working on one of the most aggressive documentation deadlines of my adult life.  Did I mention that I am an engineer type and documentation is not one of my strong suit?  The good news is that I did meet my deadline and in grand fashion.  I actually presented the first documentation package of this kind that was approved on the first pass. (hundreds of pages of computer security docs)  I can’t go into the details, but let’s just say that I was up against some very strong peers with much larger staffs than I have supporting me.

We did not know it when we planned it, but all these things came together right at the beginning of our most recent Growing Kids God’s Way class.  We also helped plan an alumni event for the the Charleston area GFI parenting ministry that was a huge success. I think we ended up with nearly 40 families in attendance for that event last weekend.  It was a lot of fun!  Stay tuned to Growing Kids Charleston for pictures.

All that said I had a short conversation with one of our pastors this morning.  He asked “how’s Caden” and I said that we were tossinga round the idea of taking Caden intot he ER today.  Caden is on a maintenance dose of Augmentin and would likely need to be ramped up to rocephin if the ear and sinus infection progressed. Well we ended up passing on the ER trip.  Caden had a faily good day even though a fever did pop back up after dark.  It is nearling midnight now and he is sleeping more peacfully than he has in the past week at this time of the night.  Obviously God has said yes to all those of you who have been interceding on Caden’s behalf.  Thank You! Many Blessings!

We recently had visits with two of Caden’s doctors. The ENT visit was to discuss getting an ear tube replaced and potentially removing Caden’s adenoids. They will also get a culture of Caden’s sinuses and maybe even clean them out while he is under anesthesia. The ENT is waiting on us to schedule this one. Once Caden is healed up we will discuss the big one. That is the myotomy of Caden’s UES (upper esophagus sphincter). We are struggling with this one since there has been no clear indication that this will help Caden to swallow. There is little research among children with this procedure where the child has never swallowed at all.

The endocrinologist visit was fairly cut and dry. Caden is growing in height and weight. His calcium levels are doing great even though we have almost completely weaned him off the supplements. We are making some slow diet modifications. Sherry is going to try pureeing some avocado and putting that through the feeding tube as an afternoon snack.

All is going pretty well otherwise. Riley and JJ are doing great. Sherry had a birthday this week. I am having some pretty major dental work done Monday. We start our next Growing Kids God’s Way class on the 20th and have some open seats. Contact us if you are interested in joining the class.

It is not uncommon for us to experience some spiritual battles when we begin a Growing Kids God’s Way class, but this year we have an added factor. I am playing a small part in a theatrical experience of the gospel called The Thorn that will begin on April 1st at Seacoast (Long Point Campus). Many cast, crew, directors, and support staff are experiencing spiritual attacks like no other time in recent history. Please join us in prayer.

Praises

• Found a short in AC unit that was causing circuit breaker to trip. Fixed it myself. I’m handy that way sometimes. Avoided possible house fire and unknown repair bill amount on this issue (hopefully lowered electric bill too!).
• Got appointment to have one tooth extracted and crown retreat on another due to a cancellation. Was going to be two weeks…been eating ibuprofen about as fast as peppermints. If you know me and peppermint then you know that is a lot of ibuprofen (still praying for $1800 to drop out of sky like manna).

Prayer Requests

• Health for the entire Osborne family
• Health and healing for Nana
• Little Forester Bradburn and his family
• Protection of our finances. This week we have been faced with issues not budgeted relating to dental work, leaky roof, car, home AC unit, computer network, and more.
• Swallowing for Caden
• Continued favor with my job for participation in The Thorn
• The Thorn directors, cast, crew, and especially those who will come experience the gospel like never before

Caden has been battling fever for most of this week and congestion caused by a sinus infection has been lingering for what seems like months.  This weekend Caden popped a 104.5 fever.  The fever in itself is not normally a cause for alarm, but Caden had been on a full does of Augmentin since Wednesday and had been on a prophylactic does of the same for months.  The spiked fever happened at a very uncharacteristic time of the day for Caden to have a full (not low grade) fever.  I called the pediatrician and he recommended that Caden be seen to make sure he had not aspirated any of the congestion and developed pneumonia.  I took Caden down to the MUSC ER and confirmed that Caden did not have any fluid in his lungs.  They called this an ongoing sinus infection and gave him a rocephin injection. They also prescribed Vantin to start 24 hours after the injection.  We started that tonight.

Tonight Caden is noticably doing better than he has in the past week.  Last night was a very long night as Sherry and I took shifts sleeping in the same room with Caden to be able to responded to his need to be suctioned.  Tonight is lookin up already.

Both our other boys are also on antibiotics for sinus junk.  Sherry and I have been treated for the same in recent weeks.  While the sinus infections are particularly problematic for Caden, they have been taking a toll on the entire family.

Thanks for your prayer and support.  Please keep all our little boys in your prayers.

Swallowing is one of those natural instinct type of things for most people. I see it as sort of in the same category with blinking your eyes. Most people have to concentrate to keep themselves from swallowing saliva even for a few minutes. Try it! Try NOT swallowing for just five minutes. Use the kitchen timer and see how much you end up drooling all over yourself after just five minutes if you don’t swallow. Its hard to not swallow.

Well for Caden this has been the story of his life since birth. Caden has never swallowed more than a trickle of liquids and that was likely not coordinated, based on nearly a dozen MBS (modified barium swallow) studies he has had done in his short four years. Caden gets all of his nutrition, hydration, and oral medication through a feeding tube. You would not know it to see him play as most other four year old boys do.

As for me, I got a very clear glimpse of Caden’s swallowing difficulties this week and I am pretty sure my mom (Nana) did too. Oddly enough, my mom and I have suffered for years with something called a Schatzki Ring. The wikipedia article I linked to does a pretty good job of describing the systems that my mom and I have experienced as recently as this week. Caden’s issues are not related to Schatzki Ring in any way but the symptoms are very similar.

Patients with Schatzki rings can develop intermittent dysphagia (difficulty swallowing), or, more seriously, a completely blocked esophagus.

What has happened in my experiences with Schatzki Ring is that some mucus mixed with the right size and consistency of food has clogged up my esophagus just above my stomach. Many of you may have experienced food going down really slow. Imagine it stopping and not letting even a sip of liquid get past. One time it was not food for me but one of those coated Claritan D tablets. Yesterday it was corn chips. I had just sat down with my buddy David for some Mexican food at one of regular spots in Mount Pleasant. He was in mid sentence filling me in on the latest big things happening in his life when it happened. I did not realize it but a bite of tortilla chips had failed to complete the trip to my stomach. I took a big drink of Coke only to have it back up into my throat and into the back of my mouth. It hit my gag reflex and I almost caused a scene that would have ruined lunch for everyone on that end of the restaurant. I jumped up while David was talking and bolted for the restroom. There I proceeded to gag myself to see if I could get the clog to come up. I rarely, if ever, get things too go down when it is a bad clog like this one was. In this process I got quite a bit of mucus in the vicinity of my airway and was unable to breathe for a few seconds. Fortunately I had enough air in my lungs to burst out and clear a path to my airway through all the mucus. I finally got the clog cleared and was able to resume lunch.

There are a couple of less evasive ways to treat the clogs that happen as a result of a Schatzki Ring. My mom and I both have had the levcin (spelling?) tablet put under our tongue. That is how they cleared my mom’s clog when she went to the ER this week. The last time I went to the ER with a clog was back in October 2004. Sherry and I had just had a baby shower. Well it was more like a card shower that Aunt Addie had arranged. We knew Caden was going to be hospitalized after birth and Aunt Addie rallied the troops to get us a bunch of gift cards to help with the gas and the extra eating out associated with an average of two 50 mile round trips to MUSC per day. We surprised Sherry as an add on to Riley’s second birthday party that day since we already had a hoop of people at the house. After the shower Sherry and I went to dinner at Olive Garden with Aunt Robin. It was the first bite of Chicken Parmesan that got me that night. Sherry had her dad come pick her up while Robin took me to MUSC. They ended up giving me an IV drug that helps relax the muscles in the area where the clog was at the bottom of my esophagus.

There is one more way to treat Schatzki ring that seems to have a longer term effect. Those of you who were following this blog back in 2004 may remember that I had a procedure just a few weeks after Caden was born. He was still in the PCICU and I had to get this thing done that caused me to be sedated. The procedure I had was a dilation of my lower esophagus sphincter.

I have been given a glimpse of what Caden lives with every day of his life. He has never pasted a mouth full of liquid through his upper GI track as far as we know. When he gets congested like he has been all this week with a head cold he has a very difficult time coughing up the mucus. He often gasps for breathe and will cry out for us to come suction the back of his little throat so that he can breathe freely and go back to sleep. Tonight he has cried out three times already and it is just after 1AM. It has been like this all week.

I am not complaining about what I have experienced with my own health. I tell you my story to help illustrate from first hand experience what it is like to not be able to swallow if even for a few moments. I tell you this to let you know how much Caden needs your ongoing prayers. He lives a tough life with the swallowing difficulties. Most people who see him at church or in the store or on the street have no idea how he may have suffered the night before.

Please pray for Caden. Please pray.

We took Caden in for a visit with the MUSC orthopedics surgeon on Monday. The official word on the MRI is that Caden’s spine is healthy. They did order an x-ray on Monday that revealed a slight progression in the scoliosis curve.  The new measurement is basically about 59 degrees which is up from 54 degrees back in April 2008.  The orthopedics surgeon believes that the slower progression in the curve is due to less growth.  While that may be the case, we believe that Caden’s chiropractor Dr. James is making a big difference in slowing the curve of the spine.

All that said Caden is not a candidate for back surgery at this time.  PRAISE GOD!!!  The orthopedic surgeon said he would not need to see Caden for another six months.

New Friends

While at MUSC on Monday we stopped by to meet one of my online twitter friends.  Larry Maio is the campus pastor at Seacoast Columbia.  His newborn baby boy Jonathan was having open heart surgery on Monday while we were in the hospital for Caden’s OrthoPeds appointment mentioned above.  We stopped by and introduced ourselves to Larry and his wife Nan.  They got to meet our little miracle boy Caden.  We hoped that meeting Caden would offer an extra dose of hope on such a tough day for them and it seemed to do just that.  They are experiencing some of the exact same emotions that we went through back in November 2004.  Please pray for the Maio family and especially pray for the rapid recovery of little Jonathan.  The Maios are blessed with three beautiful boys and would love to get some encouragement from you if you have time to visit Jonathan’s Page.

Goober Alert!

We have had our battles with goobers lately.  Tonight Caden also popped a fever for the second time this week.  Caden has been having a very hard time clearing secretions (coughing up the goobers) at night when he gets a head cold.  He has also been a little less tolerant of the g-tube feeds.

Riley and JJ

Riley is doing awesome with his homeschooling kindergarten year.  His cursive handwriting is WAY better than mine already.  He frequently gets 100% on his spelling tests and loves to share those with me so that I can take then to work.  Josiah is adding new words to his vocabulary every day.  He wakes up happy every morning and just sits in his bed and jabbers waiting on us to come get him up.  He still enjoys his groceries and is rapidly catching up to his brothers in size and strength.  He does not take any junk off either one of his older brothers and often dishes out his fair share.  Josiah’s walk is the cutest thing in the world and looks sort of like a cowboy who has been on horseback for the past 14 hours straight.

The Thorn

I have volunteered for The Thorn.  This is a theatrical presentation of the gospel message being presented by Seacoast Church and it will be an outstanding show that you will NOT want to miss.  Tickets are on sale at TheThorn.net and I fully expect to see it sell out so don’t delay in reserving your seats online today.

GrowingKids.org

If you are facing tough times there is a great post on GrowingKids.org this week to offer you encouragement and hope.  God is Working!