Caden’s Page

We are still here and may be here up into the weekend based on events of today. Sherry had a bunch of doctors come by today. We finally got to see some familiar faces with Caden’s ENT doctor, general surgeon, and endocrinologist stopping by.

Rough Night

Last night (Monday night) was very rough for Caden. His fever reached 104 again for the first time since being admitted. As I said in last night’s post Caden was also put on fairly high dose of oxygen while he is sleeping. This all happened approximately 12 hours after getting his first dose of Rocephin which is a strong broad spectrum antibiotic. The general practice doctors have started this antibiotic more for precautionary reasons since no test results have identified the source of the fevers. The blood cultures have not grown anything after 48 hours and none of the other tests have shown a definite cause for fevers.

The good news is that once we got the fever down last night Caden has had a pretty good day.

Week to come

A talk with the general surgeon has us looking to a possible surgical procedure on Friday. The surgeon does not think the little nodule next to the g-tube is the source of the fever, but he is interested in getting the g-tube moved to give that area of Caden’s tummy some relief. He said that there is a chance the spot could develop into infection if it continues to drain and expose that area of tissue. I missed that conversation and the nurse cannot find notes on Caden’s chart showing a plan for surgery on Friday so I sent an email to the surgeon as well as the ENT doc and cardiology. ENT was included because we want to take advantage of any anesthesia to get the ear tube replaces. There is also interest in getting a culture of the sinuses and that cannot be done without anesthesia. Cardiology needs to be consulted for any anesthesia for Caden.

Storm Watch – Hanna

Another big concern will be whether Hurricane Hanna will make landfall near here. I know she is a tropical storm tight now but all predictions are pretty much marking her as a hurricane by the time the US mainland is hit. Sherry and I have quizzed MUSC on their evacuation policies. It looks like one or all of us may be in for a minimum of a three day stay if the storm does cause evacuations before Caden is discharged. Tomorrow Sherry and I will make a determination on whether she and the other boys will evacuate and where they will go if voluntary evacuations begin as I suspect they may by late day tomorrow.

It’s a Good Night So Far

It is almost 2AM Tuesday night and Caden is sleeping sound. He has shown no signs of fever. He is back on the 10 liters of O2 to maintain his sats in the 90s.

I am off to get some rest. I did get a pretty good nap this afternoon. Riley had to come wake me up since I set my alarms for AM instead of PM. Riley and Josiah both have stood up well to the back and forth to the hospital this week as Sherry and I have taken turns with Caden. Sherry and I are both tired, but otherwise we are holding up pretty well.

We appreciate your prayers and support.

We are still at MUSC and the source of the fevers has not been identified. Caden has been on and off of oxygen for the past 24 hours. His O2 sats were dropping into the 80s without oxygen. His normal range is 97+. His heart defects did not affect his SATS the way some kids are affected. The docs have run several blood tests, done a CT scan of Caden’s sinus area, and are now scratching their heads. They plan to have peds surgery com by to look at the little nodule (cyst looking thing) that has continued to pop up next to the g-tube site. This is where I am most suspicious even though we have been assured by peds surgery that this thin is not infected. I believe about the outward facing nodule, but I am wondering if there might be some bigger problem between the stomach and abdominal wall or in the stomach itself. I don;t guess we will know the answer tot hat until they surgically explore that area

Caden did get his first round of Rocephin today. That is the high powered antibiotic injections that he got back int he spring when he had pneumonia. It is not being given for any specific reason other than it is a strong and broad spectrum drug. We will see how the night goes in terms of fevers.

That said, I need to get some rest so I can be ready to battle the late night nurses and assistants who want to poke and prod him at the worst of times. I will be dropping some updates via twitter if you want to follow us there. It is a cool little trendy geek tool that is easy to use with a cell phone.

Oh…For those outside the SC low country, we are also in the bulls eye of the first major hurricane to point at Charleston in a long time. This week could get really interesting whether we get discharged before Hanna arrives or not.

Caden is being admitted to MUSC after the ER visit mentioned in the previous post. The fever he had when Sherry left for the hospital earlier today took four hours to break. Sherry and the ER doctor hit it off really well. The doctor was very straight forward and transparent about his line of thinking in coming to his decision to admit Caden. This is the kind of doctor we like.

There was no sign of pneumonia after a chest xray and examination of Caden. They have taken blood for cultures and other blood work. The initial CBC showed a slightly elevated white blood cell count. They are looking at just about everything right now because a severe infect could jeopardize the heart surgery date. I asked if they considered the little cyst (spot with pus) next the the g-tube site. They have considered that and may press to have that site explored by pediatric surgery if they cannot find anything else. They will start by trying to look at that spot on his tummy with an ultrasound. The doctors are also talking about getting the National Center for Infectious Diseases (NCID now part of CDC) involved. Given the regiment of antibiotics Caden has been on for the past 30 plus days, there should not be any infection in Caden’s body.

To complicate things, I am home with a vehicle that I do not have keys to. We only have one set of van keys due to my loosing a set back during our memorial day trip to Atlanta. Sherry took my car to the hospital and forgot to leave the van keys. This weekend is shaping up to be a handful.

Please keep Caden and our family in your prayers.
Thanks,
Hank O

A firm heart surgery date has been set for October 15th. I say firm date because that is the date that we have reserved on the schedule. There is a slim chance that we may get the surgery done on September 22nd, however that date is dependent on the surgical load of the doctor leading up to that date. The 22nd is a Monday and the surgeon likes to keep Mondays mostly freed up in the event more emergent cases arise over the weekend. So we are planning on the 15th of October, but don’t be alarmed if we pop up at the last minute and go for the 22nd of September. The surgeon is going to be out of the country for part of September or we would have likely got in sooner. I understand that there was availability before he leaves the country but Caden’s case is complex enough that he wanted to see it all the way through recovery.

Off to the ER

The big hurdle that we have to get past at this point is the avoidance of colds and infections. As I write this Sherry is on her way to the Emergency Room at MUSC with Caden. We took turns sitting up with him the entire night last night due to an excessive amount of secretions. This was causing Caden to have difficulty sleeping. He was coughing and gagging constantly until about 5:30 this morning when things finally improved a little. Since Caden has been unable to swallow since birth the presence of excessive secretions has always presented an aspiration risk which can lead to pneumonia. As the night went on a fever popped up and it topped out at 104 F. Normally we do not let a 104 fever by itself alarm us as long as it comes down pretty quick with Tylenol and/or Motrin. We usually give both meds at the same time and expect the fever to drop within the hour and it did as usual. The problem this time is that Caden is already on a fairly strong anti-biotic as I wrote about last week. This is actually the third different antibiotic in a row with extended doses. By extended dose I mean that Caden typically will get 20 days of an antibiotic rather than the normal 10 days. So a talk with his pediatrician and a reappearance of the fever early this afternoon left us with no choice but to get Caden examined to make sure there is no fluid on his lungs.

Prayer Requests:

* Whole body healing for Caden, as always
* Continued protection from infections, colds, and all illnesses (Caden is on his third antibiotic for sinus junk in less than a month)
* Continued discernment for the doctors and us.
* Continued strength and peace for Sherry and me.
* Protection over all our boys’ emotions.

Riley suggested today that the malfunctioning pacemaker that needs to be removed from Caden’s stomach might be causing the current fever and secretions. While that is not likely it is very insightful especially coming from a five year old. he would have me add that he is almost six. (October 18th) I do still wonder about the little cyst looking area beside the g-tube site. We have been battling fevers on and off for more than a month.

Thanks for keeping track of us. Please continue to pray for our little Caden and the rest of our family.

Thank you for your love and prayers as we go through this season!  Right now we are resting in the Lord being so thankful for the amazing ways God works His plan.  We realize that God prompted us to ask the right questions.  These questions brought us to a [corrected] understanding that a pacemaker is NOT needed after the major valve repair.  How thankful we are that we did not go forward with getting the pacemaker out as a separate surgery!  While the thought of your baby going into surgery hurts, I am grateful that these details were sorted out sooner rather than later.  We have a “Family Camp” on Oct. 10th that means a lot to our family to be able to attend.  We are praying that finding and repairing the valve now, will allow for plenty of healing time for Caden.

We know “God works all things together for good” and I look forward to the growing and stretching God will do in our lives as we lean fully on Him.

Much love to you all,

Sherry and family

There are more details outlining the visit with the cardiologist in the previous post.

Our visit with Caden’s cardiologist today was bizarre in some ways. We sort of had ourselves built up for what we thought we were going to hear and BAM! And then before it is all over with the cardiologist says they will be putting Caden on the schedule for pacemaker removal AND the major left heat output repair (aortic valve repair/replacement). They told us to expect the surgery date to be in about three weeks.

I will run through the sequence of events to help you understand why the day was so bizarre for us.

What we expected to hear the cardiologist to say was that the pacemaker could come out for good. And he did say that as expected so that was not a surprise. The initial surprising part of the day was when he told us they wanted to move forward with scheduling the pacemaker removal in September without even doing an echo cardiogram today to see how the left heart output (aortic valve) was doing. When we questioned the reason for not having an echo today they said they would just do an echo on the pre-op day prior to the pacemaker removal. Sherry and I both were confused because our last visit with Caden’s cardiologist had us believing we would face surgery within a couple of months. Instead the cardio-thorasic surgeon had shot down the short term surgery plan to repair/replace the aortic valve and wanted to have another look at Caden’s left heart output again in 4-6 months. Our appointment today is at the 4 month mark. The finding earlier this year showed the left ventricle wall was thickening due to the amount of extra work it was having to do to get blood past the aortic valve area. The thickening is called hypertrophy (spelling?). This is a danger because the thickening of the chamber wall can become so servere in a patient that the heart muscle can begin to take over the capacity of the ventricle to the point that it results in heart failure.

So, at today’s appointment, after this intial plan of pacemaker removal Sherry and I talked through all the issues we were facing with the cardiologist. We explained that we really have no one to help us sort through the priorities. We are Caden’s care coordinators and patient advocates and we really needed their help in understanding things. Here were the things we brought up that needed to be considered:

1. The orthopedics team can wait up to a year for back surgery to allow for all heart repair and healing. If the left heart issues drag out any longer than a year then we will want to look at options for going forward with the back surgery before the aortic repair is completed.
2. An MRI is needed before a back surgery.
3. The halter monitor supports the permanent removal of the pacemaker.
4. The only reason to remove the pacemaker is to get an MRI at some time prior to back surgery. The pacemaker is broke and there is no other driving factor to remove/repair it.
5. Caden should not be put under anesthesia any more than necessary.
6. We need an ear tube replaced.
7. We need peds general surgery to explore the area under the abscess next to Caden’s g-tube site. Caden has been experiencing pain in that area.
8. There is a risk associated with removing the pacemaker. The nerve that controls the diaphram (breathing) is in close proximity to the pacemaker led.

Now considering all of the above items we were sitting with some big questions today.

1. What if the next echo says the aortic valve needs to be repaired within the next six months or so? Answer: It would certainly be preferable to do only one heart surgery to get the pacemaker out and repair the left heart output if possible.
2. Is it safer to try and remove the pacemaker led during a valve repair which requires a full open chest surgery as opposed to doing a thoracotamy? Answer: There would still be a risk of diaphram damage, but more room to work is not a bad thing.
3. Will there be a definite need for a pacemaker after the valve repair/replacement? Answer: No! We are not sure why we thought this, but we got set straight on it today. No pacemaker is needed for any known reason in the future. PRAISE GOD!
4. What is the down side of getting an echo today? Answer: There was a plan of a sedated echo on pacemaker pre-op day. …We stated that they would likely not need to sedate Caden for the echo because he has always shown great self control during echos. Of course today would be the day Caden threw his first full blown temper tantrum in a clinic in response to, of all things, getting his blood pressure taken. So needless to say, this shed doubt on our claims of self control and they were a little skeptical about trying an echo today, but eventually agreed to give it a try. Caden was a champ and they got everything they needed with absolutely no problems from Caden. Uhm..There’s a TV over the bed in the echo room and the big purple dinosaur was a very good distraction as usual. We will be working on the blood pressure thing at home in the coming weeks with our own blood pressure machine. 😉

So after the echo we learned that the cardiologist had been called into surgery. We decided to give the nurse my cell number and go for a late lunch in the cafeteria where Caden proceeded to throw another tantrum. At this point we called it a day since we had not heard from the cardiologist and headed to the van. As I was packing the van I noticed that I had a message on my cell. The nurse had left a message a few minutes earlier saying the cardiologist was out of surgery and needed to speak to us in person back in the clinic. I left Sherry in the van with the boys and I went back into the hospital to see what was going on. Once I arrived I was the only non-staff person in the area so we talked in the nurses station area of the peds cardiology clinic. This was good because the doctor was able to draw some pictures on the whiteboard to help me understand why Caden needed the valve repair sooner rather than later. My first question was, “Will the surgeon agree this time?” The cardiologist said that he had no doubt that the surgeon would agree with moving forward with surgery within the next few weeks. I did get Sherry on speaker phone to make sure she had a chance to ask questions. Ultimately the cardiologist said this was not an “emergent issue”, but that it could not wait six months before being repaired because the hypertrophy was progressing.

So as things stand right now we are waiting on a call to give us a surgery date that we expect to hit the calendar about three weeks from now. The surgery will be to remove the pacemaker and more importantly repair the aortic output problems. This may be a valve replacement or it may be an aorta valve repair of some sort. We will know more details on the surgical approach once we meet with the surgeon himself but it sounds like the final surgical decision may not come until surgery day when they open the aorta just above the aortic valve. We are not sure about the ear tube and g-tube issues at this point. We will see if one or both can be done the same day as the heart surgery. The valve repair/replacement is a huge and tedious surgery so the other ‘little’ procedures sort of take a back burner for now.

One good thing about getting all the heart stuff done at once is that trips to the ICU will be minimized. Due to Caden’s age and unique form of communication we are concerned about being forced to leave him awake and alone in the PCICU even for shift changes. Right now he is cognitively around a 3 1/2 year old, but uses a modified form of signing to communicate that only our immediate family can understand. He is noticeably concerned about all that is going on and we want to minimize the emotional impact as much as possible. I asked the cardiologist to try and arrange for us to have an isolation room in the PCICU where we might be allowed to stay with Caden in the PCICU 24/7 even during shift change. He understood our concerns and would work to try and accommodate the request.

As a side note, I lost a crown while eating some malted milk balls and drinking a Coke this afternoon. This happened while on the elevator on my way back to get the news about the surgery from Caden’s cardiologist. This bought me my third ride in a dentist chair this week. The tooth today was cracked and required an extensive repair. Fortunately, the dentist is open late and was able to work me in…again. I had a different crown come off Sunday night (with a craked tooth also) that eventually resulted in an extraction yesterday. That is two different crowns coming off with cracked teeth under both within a few days. Sherry keeps reminding me that “This is the day the Lord has made”. I am really working on the rejoicing and being glad part.

Prayer Requests:

• Whole body healing for Caden, as always
• Continued protection from infections, colds, and all illnesses (Caden is on his third antibioitc for sinus junk in less than a month)
• Continued discernment for the doctors and us.
• Continued strength and peace for Sherry and me. AND my teeth!
• Protection over all our boys’ emotions.
• Support for our family in general. We just finished leading a Growing Kids God’s Way class and are not currently in a small group.

Today we see Cardiology.  Please keep us in your prayers as previously requested.  The last post details what all we will be talking about and why.

I have been playing with our new digital camera.  It is a low end point a shoot that we got to replace the one I broke on Josiah’s birthday.  It has not been a good week for cameras and teeth in our house.  That is a story for another day.  Below is picture of Caden and then a video containing some footage of Josiah practicing his new skills of consuming liquids through a straw.  The last half is of Caden singing Old McDonald and doing some signing.  It is all cute to me, but I am a little partial.

In this video you will hear Caden in the background talking, singing, and responding to my interaction with Josiah.

If you can’t view the video on this page then go HERE.

“Since our last communication we have taken Caden to see MUSC orthopedics again. The MRI is still required before the back surgery. Orthopedics and CHOP consider the need for growing rods to be a distant second behind Caden’s heart diagnosis. They said that waiting a year to install rods is okay especially since the scoliosis did not progress at all between the April and June appointments. They think that the rapid progression of the scoliosis over the winter was likely due to a growth spurt. Caden has been experiencing some pain around his g-tube site near a little abscess. We have seen MUSC peds surgery and they want to explore this area by the g-tube site the next time Caden is put under general anesthesia. They are suspicious that the site might have some foreign matter under the skin that is causing Caden this irritation.

From and ENT perspective Caden is also in need of a replacement ear tube.

I am sure you are aware that we ended up going through two halter monitors since we last talked to you. It has been nearly a month since we completed the second halter monitor and we have not heard anything back from pediatric cardiology regarding the results. We are also approaching the four month mark since the last echo and I remember that the cardiothorasic surgeon wanted to wait for another look at Caden’s aortic output and development somewhere around the 4-6 month mark from the last echo.

All that said we are interested in getting some of the above procedures/surgeries completed in September if possible. We would like to see if we can get one or more of these things completed in combination with the pacemaker removal sometime during the month of September. This would allow for the MRI to be completed and allow peds surgery a chance to explore the g-tube site. I know this may be a stretch, but replacing the ear tube would be a great before we get too close to cold and flu season. We know that coordinating multiple surgeons etc can be very complicated and wanted to start planning early. We have some very important family events/vacations coming up in October and November and we want to keep those plans intact unless there is an emergency reason to cancel these activities.

We do not have Caden scheduled with you in the near future for an echo and wanted to take this opportunity to fill you in on the status of orthopedics, ENT, and other recent events. Please let us know your recommended course of action given the above information. We look forward to hearing from you soon.”

“I got a verbal report from one of our EP doctors, who looked at Caden’s Holter and his rhythm looked good. There was only one brief pause in the usual normal sinus rhythm without any abnormal escape beats. We need to get together now and decide about timing. I’ll talk to the cardiothorasic surgeon about that and I’ll talk to him about how he feels with other services involved such as ENT and peds surgery.”

We are not completely sure what this will lead to, but we are still praying for the removal of the pacemaker rather than a repair. Thank you for covering us in prayer over this issue. God has shown us so many ways how He is working in our daily lives with Caden’s health and with our finances in particular.

Prayer

I am excited once again to be able to cut and paste some prayer requests from past posts straight into the praise section of the current post! Glory to God!

Praise Reports:

• A clear Halter monitor result (no heart blocks and no weird/wide beats)
• There was enough data collected from the Halter monitor.
• Discernment for the doctors and us.
• Good communications with local orthopedic surgeon
• Positive results from back x-rays during orthopeds visit. No curve progression!
• Strength and peace for Sherry and me
• Godly counsel to be available to help us sort through the medical risks and the associated decisions that need to be made in the coming weeks and months
• Protection for our finances in regards to the appliances. Overtime 🙂

Prayer Requests:

• Whole body healing for Caden, as always
• Continued protection from infections, colds, and all illnesses
• Continued discernment for the doctors and us. That our steps will be directed by the Lord rather than fear.
• Continued strength and peace for Sherry and me
• Protection over all our boys’ emotions (they have already overheard way too much about all this)

Sunday was Josiah’s birthday. That’s right, it has been a whole year and our little guys is growing up fast. You can get a peak at Josiah over on the Land of Ozz. He is standing well and has taken a few steps. He should bust out running after Caden and Riley any day now.

The cardiology department at MUSC finally contacted us last week via voice mail concerning the Halter monitor. The message said that they did not get what they wanted from the last monitor. They mentioned possible battery problems which I know was not the case.  The display on the Halter monitor was working and displaying that the monitor session was complete when I removed the battery as instructed.

So we are going through another 24 hour Halter monitor. The monitor session ends at approximately noon on Monday.  Please pray that God’s plan will be evident to all and for Caden’s comfort.  The sticky leads (and the tape needed to keep the leads from coming off) causes rashes and a grumpy boy!  We are also headed to the doctor for fever and green goobers…again!

Thank you all and may God abundantly bless your day!