We had a visit with the orthopedic surgeon today and we completed a 24 Halter monitor. Today is all about good news.

Cardiology – Halter Monitor

The Halter monitor was completed this morning. The really good news about the Halter monitor was that Caden did not have a single retching spell or a fever during the Halter. This is a pretty big deal. Going a 24 period without retching is rare. Retching and fever generally come with an increase in heart rate and respirations. The tube feeds have been known to cause retching spells for Caden, although the Nissen Fundleplication prevents anything from coming up. On a heart monitor we have observed Caden’s heart rate rise to nearly 170 beats per minute during a retch and then drop to about 100 suddenly for a few moments (called a “heart block”). Needless to say, a retch can really monkey with the lines on telemetry or a Halter monitor. We did not change any of our habits during this 24 period, so to go a day without a retch was a huge blessing! Then about ten minutes after removing the Halter monitor, you guessed it, Caden retched. Sherry gave a praise God or a hallelujah from the kitchen. I didn’t get it at first. She had to explain to me that she was glad that the retch did not come ten minutes earlier. That is truly an answered prayer!

Orthopedics

The results of today’s x-ray was no change-not a single digit!! The curve of Caden’s spine was measured to be exactly what it was three months ago. We are back to seeing them at 6 month intervals so we’ll go again in December.

The scoliosis was a pretty big issue the last time we were in there, but that was coming off of an approximate 20 degree increase in curvature in less than six months. That is attributed to a growth spurt and is certainly a secondary issue to the heart concerns. One question that we asked today to help put things into perspective from a priority stand point was, “Can the back surgery wait a year?” The answer was “yes.” The scoliosis takes second place in the list of priorities compared to the heart issues.

We did talk about our trip to CHOP and our concerns about communications problems in the past. All of that conversation seemed to come as a bit of a surprise to the orthopedic surgeon. We basically left the visit on a good note and will continue to have Caden followed locally to monitor the scoliosis for progression.

Prayer

First of all, thank you for the prayers for our family and especially over Caden during the last 24 hours. Your prayers are felt and are being answered. Please know that.

I am so excited to be able to cut and paste some prayer requests from the last post straight into the praise section! Our God is awesome!

Praise Reports:

  • Protection from infections, colds, and all illnesses
  • 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

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.
  • A clear Halter monitor result (no heart blocks and no weird/wide beats)
  • That there was enough data collected from the Halter monitor. We found a couple of leads off after bed and nap times.
  • Continued strength and peace for Sherry and me
  • Protection over all our boys’ emotions (they have already overheard way too much about all this)
  • Protection for our finances in regards to the appliances.*

*We did have an air condition repair person come out and the initial labor was less than $80 for a work around solution. The follow up part and labor will be about $275. That is MUCH less than it could have been. The refrigerator repair man is coming today. We have operated with a puddle pan for too long and cannot find the cause.

Thank you all for being such a wonderful “family” to us, as brothers and sisters in Christ. We are blessed.

Love,

The Osbornes

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NIV)


June 10th, 2008

We had a visit with the orthopedic surgeon today and we completed a 24 Halter monitor. Today is all about good news.

Cardiology – Halter Monitor

The Halter monitor was completed this morning. The really good news about the Halter monitor was that Caden did not have a single retching spell or a fever during the Halter. This is a pretty big deal. Going a 24 period without retching is rare. Retching and fever generally come with an increase in heart rate and respirations. The tube feeds have been known to cause retching spells for Caden, although the Nissen Fundleplication prevents anything from coming up. On a heart monitor we have observed Caden’s heart rate rise to nearly 170 beats per minute during a retch and then drop to about 100 suddenly for a few moments (called a “heart block”). Needless to say, a retch can really monkey with the lines on telemetry or a Halter monitor. We did not change any of our habits during this 24 period, so to go a day without a retch was a huge blessing! Then about ten minutes after removing the Halter monitor, you guessed it, Caden retched. Sherry gave a praise God or a hallelujah from the kitchen. I didn’t get it at first. She had to explain to me that she was glad that the retch did not come ten minutes earlier. That is truly an answered prayer!

Orthopedics

The results of today’s x-ray was no change-not a single digit!! The curve of Caden’s spine was measured to be exactly what it was three months ago. We are back to seeing them at 6 month intervals so we’ll go again in December.

The scoliosis was a pretty big issue the last time we were in there, but that was coming off of an approximate 20 degree increase in curvature in less than six months. That is attributed to a growth spurt and is certainly a secondary issue to the heart concerns. One question that we asked today to help put things into perspective from a priority stand point was, “Can the back surgery wait a year?” The answer was “yes.” The scoliosis takes second place in the list of priorities compared to the heart issues.

We did talk about our trip to CHOP and our concerns about communications problems in the past. All of that conversation seemed to come as a bit of a surprise to the orthopedic surgeon. We basically left the visit on a good note and will continue to have Caden followed locally to monitor the scoliosis for progression.

Prayer

First of all, thank you for the prayers for our family and especially over Caden during the last 24 hours. Your prayers are felt and are being answered. Please know that.

I am so excited to be able to cut and paste some prayer requests from the last post straight into the praise section! Our God is awesome!

Praise Reports:

  • Protection from infections, colds, and all illnesses
  • 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

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.
  • A clear Halter monitor result (no heart blocks and no weird/wide beats)
  • That there was enough data collected from the Halter monitor. We found a couple of leads off after bed and nap times.
  • Continued strength and peace for Sherry and me
  • Protection over all our boys’ emotions (they have already overheard way too much about all this)
  • Protection for our finances in regards to the appliances.*

*We did have an air condition repair person come out and the initial labor was less than $80 for a work around solution. The follow up part and labor will be about $275. That is MUCH less than it could have been. The refrigerator repair man is coming today. We have operated with a puddle pan for too long and cannot find the cause.

Thank you all for being such a wonderful “family” to us, as brothers and sisters in Christ. We are blessed.

Love,

The Osbornes

June 2nd, 2008

I know I pretty much left everyone hanging after the trip to Philadelphia. Leaving everyone hanging was not my intent but rather a result of some unknowns and my state of mind in reference to all that is going on. The end result after CHOP was that the orthopedic surgeon up there agrees with the one in Charleston. The two are actually friends or at least know each other pretty well. Even still the Ortho doc at CHOP had a much better bedside manner. He gave Sherry and I more information on why an MRI is needed and what to expect after inserting growing rods. The surgery requires an MRI. Am I beginning to sound like a broken record? The reason is to make sure that there is not any nerve tissue damage that could cause paralysis if the bones in the back are straightened.

Cardiology

So we came back and opened an dialog with Caden’s cardiologist. That discussion took a turn that we were not expecting. The cardiologist has turned up the heat on us to get the current pacemaker repaired. He suggests that they can take Caden into the OR and remove the current pacemaker (requires three incisions), roll Caden down stairs to get an MRI (still under general anesthesia with at least one wound open into his chest cavity), and then take him back to the OR to replace the pacemaker. You can get a visual on the three incisions by clicking this link to a picture of the Caden in the ICU the day after the pacemaker was installed. The incision on the back is the one that would be opened to gain access to the heart.

Let me pause and remind you that this is the same pacemaker installed on 6/15/06 that failed diagnostics during the six week followup during the first week of August 2006 and was subsequently TURNED OFF in October 2006. So now at 3 1/2 years of age Caden has lived longer without a functioning pacemaker, since the diagnosis calling for one, than he had lived before the diagnosis was ever made. By the way, when the technician went to turn the pacemaker off in Oct’06 I asked, “Can you tell from the history of the pacemaker if it ever detected a need to fire since being installed?” The answer was Yes she could tell and NO there was never an event that would have caused the pacemaker to try to fire. The reason for the question was because the pacemaker was only having trouble when firing. The detection mechanism was working the entire time the device was turned on from June to October 2006. You can read where I wrote about this back in October 2006. So for approximately 135 beats per minute for more than three months the pacemaker did not detect one single beat that it needed to pace. That is more than 17 million heart beats that happened without a condition that would have required the pacemaker to fire if it was able to. I digress….

Okay, yes we did agree at one point to have the pacemaker repaired. Then we tried twice and something happened each time. So after the pacemaker failed and then two attempts to get it repaired failed, we took a step back and said, “God, are you trying to tell us that we made a bad decision with getting the pacemaker in the first place?” Seriously, that is the way we have viewed it ever since especially given the overwhelming evidence that I mentioned above about the pacemaker never detecting a need to fire in the first three months.

As certain as I may sound in my words here, I can assure you that I have battled with this issue. Sherry has too. She actually got a pretty good piece of advice from our pediatrician. He said to request a halter monitor. You see, that is the device that started all this. Even though Caden was discharged after the catheter heart block incident with no need for a pacemaker, the follow on halter monitor led the cardiologist to recommend a pacemaker. So, if Caden passes a halter monitor then what will the cardiologist say? That is the current question. The halter monitor is on the way and we will post letting everyone know when the 24 hours start. We are believing and asking God for confirmation (something more than a ‘feeling’) that the pace maker is not needed.

We need a clear direction on whether to consider the pacemaker repair or not. Even if we consider it there are some pretty significant risks involved with the removal and transportation of Caden out of the sterile OR through the hospital with open wounds. You might remember, we considered this MRI break from surgery once before but that was back when they said the pacemaker lead could be left in during the MRI. That scenario removed the need to make a trip trough the hospital to the MRI machine with an open incision into the chest cavity.

I have been looking for an ear to bend for some Godly counsel. I met with a good friend that I look up to a few days ago. He offered some great advise and also helped me come up with the name of a mutual friend that can probably help me sort through some of this medical mess. You see, we certainly want the very best for Caden, but every single path we have to choose from has some risk associated with it. We have a strong aspect of faith and hope in God that most doctors have very little appreciation for. There’s always a pull between the doctor’s facts and our faith.

Antibiotic Addiction

I am sure the pediatrician would not find that title very amusing, but Sherry read that on our little friend Sammy’s care page a few days ago. We both laughed at how it could be used to describe Caden’s use of antibiotics. Little Sammy seems to like antibiotics as much as Caden does. Caden is currently on his third antibiotic in a week and a half. He continued to have fever of more than 103 while being on two separate ones for more than three days. One was treating infection in an abscess by his g-tube site and the other was treating the standard green sinus drainage/ear infection type stuff. He has not had fever in several days now, but did get a trip in front of the chest x-ray machine to check for pneumonia and all was clear. Praise God!

Scoliosis
We are scheduled to see Caden’s primary orthopedics doctor on June 9rh. We plan to discuss with him our trip to CHOP. We want to try and open a better dialog with him and plan to present him with some requests we have in terms of communication. If he cannot agree to those things then we will request to be seen by a different doctor locally. Another reason for the appointment is to see if the curve has changed over the past 3 months.

Other Concerns

We seem to not be getting any response from Cardiology or Orthopedics when we raise concerns about Caden’s current condition over all. We are not the only one realizing a change in his stamina. I ran into Caden’s physical therapist at a GFI event at church last week and she echoed what she had told Sherry. Caden is no longer performing physical tasks that he has previously mastered. He has been loosing his balance when standing and sitting. This has been noted by us, physical therapy, and occupational therapy. His energy level has been very low and he’s had difficulty even finishing an hour of therapy. Our biggest question is whether this is related to his back or heart.

We know that the direction of the scoliosis curve could protrude in on the right lung and potentially affect pulmonary performance if left to progress too far without surgery. I imagine that it could also affect balance. The cardiologist did state that one of the symptoms of the hypertrophy is being easily exhausted. We also know that the cardiologist was pretty certain that the hypertrophy (thickening of the left ventricle heart muscle) was significant enough to warrant surgery within the next few months for an aortic valve replacement. The heart surgeon put a pause on the heart surgery for another 4-6 months due to Caden’s size and complexity of the surgery required to replace Caden’s aortic valve. Remember, Caden has pretty unique vascular anatomy.

Prayer Requests
Some of you I have talked to in person and I know that you are already praying for some specifics. Please don’t stop praying for us now. Sherry, I and our boys need you prayer warriors as much as ever right now. I will give you some specifics to pray for below.

Praises!

  • Clear lungs on recent chest x-ray
  • Safe trip to and from GA with a stop on a farm in upstate. The boys did remarkably well on the drive and we had a fun time.
    (View the video)
  • Some success with potty training. Caden is staying clean and dry longer but still isn’t initiating the “potty” sign. He is also doing much better at pulling his pants up and down by HIMSELF…Mommy is thankful!
  • For all our brothers and sisters in Christ Jesus who recognize our needs and lift us up. Our wonderful church family has been so uplifting. You are a blessing!

Prayer Requests:

  • Whole body healing for Caden
  • Protection from infections, colds, and all illnesses
  • Discernment for the doctors and us. That our steps will be directed by the Lord rather than fear.
  • A clear halter monitor result (no heart blocks and no weird/wide beats)
  • 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
  • Protection over all our boys’ emotions (they have already overheard way too much about all this)
  • 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 from the appliance demons, if there is such a thing. The refrigerator/freezer started periodically leaking this week. It is currently 77 degrees in our house, it is 75 outside, and our air conditioner thermostat is set at 73.

Here is a verse that Sherry wanted me to share:

“A man’s steps are directed by the LORD.
How then can anyone understand his own way?”
Proverbs 20:24 NIV

This is one that our pediatrician shared with us:

“Plans fail for lack of counsel,
but with many advisers they succeed.”
Proverbs 15:22 NIV

I have been enjoying Proverbs for a number of reasons in addtion to the medical issues we face with Caden. These verses speak well to the above:

“Trust in the LORD with all your heart
and lean not on your own understanding;

in all your ways acknowledge him,
and he will make your paths straight.

Do not be wise in your own eyes…” Proverbs 3:5-7a NIV

May 14th, 2008

Ready to go home

Sherry just reminded me that I have not posted to let everyone know we made it home safe. The ENT visit ended with the above picture. This is what a 3 1/2 year old says after 36 hours of non-stop travel and doctor’s appointments 658 miles away from home. “Can we go now? I have had ENOUGH!”

We did the whole planes, train, and automobiles for real. We rode buses, taxis, trains, and airplanes all within a four hour period yesterday. We even got to watch a life flight chopper land on the roof of CHOP. Caden thoroughly enjoyed anything with moving parts especially if he was on it while it was moving.

Sherry and I had a pretty long talk on the back porch yesterday evening while Riley and Caden played in the back yard. I sent a lengthy email to Caden’s cardiologist as a result. I will post again once we know more about the timing of things. Right now, I’m tired and I am going to bed.

Thanks for following us on this trip. Thank you so much for your prayers. I am glad I made the trip, but I am more glad to be home.

May 13th, 2008

We just confirmed an ENT appointment at 12:30. Prayer and persistance works.

May 13th, 2008

Caden looking out over PhiladelphiaWe had a pretty good night. As I said yesterday we did not get into the Ronald McDonald House. They were full, but helped make a reservation that was MUCH cheaper than anything I could find on my own within a $10 cab ride distance of the hospital. As you can see from the picture we ended up right in the heart of Philadelphia. We are in an Embassy Suites in city center that is right next door to an 80-90 floor sky scraper. Our little 23 floor hotel looks like a flee sitting next to a cat when comparing the size to this building in the background. We are on the 7th floor and Caden absolutely loves the balcony. I was just thinking last night that you would be lucky to get Riley to even look out the window from the other side of this hotel room, but not Cadan. The child has almost no fears at this point in his life.

Caden is still sleeping at 8:46. It was very difficult to get him settled down last night. He kept wanting to go bye-bye. He was noticeable nervous with being in a strange place. He would not let me get more than five feet way from him. The hotel room actually has the bed in a separate room so I was able to sneak out and get a shower, pack, and write this post while Caden gets a little extra rest. He went to bed with a little bit of a fever and then woke up at 5:30 with a fever again. I am wondering if this is not his nerves. We have seen Caden run a fever every single time we have traveled in the past. Whether it is to Columbia to the zoo, to Atlanta to visit Grandma and Grandpa, or to the mountains to pick apples, he has run a fever for what seems to be no particular reason.

Anyway, I will wrap it up with a short note about our orthopedics visit. I am not going into much detail because Sherry and I still need to talk through it and she actually wants to help write the post on this subject. The bottom line is that we got some questions answered, but left the meeting with just about as many new questions. We are still headed for a back surgery in the near future. Sherry was able to join the entire meeting with the orthopedics surgeon by conference call. We ended up with five doctors, surgeons, and a nurse practitioner in the room yesterday. The same happened in genetics. We continue to be told that the presentations (diagnosis list) that we are dealing with is one of the most complex combinations that most folks have seen in a 22q11.2 case. This complexity is at the heart of our struggle to make the best choices concerning Caden’s health and future.

We still have a chance to see ENT today. Please keep us in your prayers. We plan to go hang out at the hospital for the rest of the morning to see if we can jump in the place of a no-show in ENT or another clinic.

May 12th, 2008

We spent about an hour and a half in the genetics cetnter. It seems we have done pretty well at getting Caden to all the specialists that they would normally recommend. Their observations of Caden left them impressed with his growth and cognative development. Their primary concern, once the heart and scoliosis issues are ironed out, would be speech development and swallowing. They were encouraged to hear that we had already looked into the feeding and swallowing center in NJ. They were glad to see us seeking out the best care for each diagnosis.

We are currently in the Ortho-Peds waiting area. This is the big appointment for this trip. Genetics has given me an idea of what to say and what I might expect to hear in reponse. We are being encouraged to ask about options other than “the best” option for assessing the spin since the pacemaker/MRI thing is so complex. We might expect the orthopedics folks here to recommend waiting on the heart stuff to get done first.

We will see. I will update later.

Oh…we missed out on Ronald Mc House. They did help use save about $50 on a hotel room.

May 12th, 2008

We are on board the SEPTA rail system headed to University City. It’s a $7 ride for us. We should find out if we have a spot at the Ronald McDonald House within the next couple of hours.

Caden is LOVING this train ride. He is glued to the window pausing every few minutes to sign train.

May 12th, 2008

The flight went great. Caden slept most of the way and showed no sign of discomfort. Praise God! Caden is currently standing at our window as we wait to exit the plane. He is loving the other airplanes he sees taking off.

We will update again later.

May 12th, 2008

We got through TSA fine. Caden is in his seat and very excited. Taking off in minutes. More later.