Caden’s Page

Caden is stable and we are all about to be sleeping.  Caden’s night shift team is very impressive and super sensitive to our requests to be notified immediately if there is any chance that Caden will be allowed to wake up before morning shift change.  Caden is in an isolation room that will allow for privacy for us to bunk in with Caden tomorrow night.

Caden’s condition is good.  Caden tried to wake up a few times causing the nurses to give a little more medication than they were expecting to keep him sedated.  It got a little busy and tense around Caden’s bedside for a while this evening during these attempts to wake up.  Sherry ask his nurse if the attempts to wake up concerned her and her response was, “he has not done anything to make me pee my pants”.  Basically they want to keep blood pressures on the lower side to allow the incisions to heal and seal completely before allowing full (normal) blood pressure through his arteries.  That means that waking up and getting excited is not a good thing just yet.

We expect Caden to come off the respirator and be allowed to wake up some in the morning.  We will post as things progress.

We will get to see Caden at about 5:15.  He is in the PCICU recovering.  The surgeon talked with Sherry and I and told us things went well.  The bleeding is not a huge surprise, but they will want to monitor it to make sure it stops.  They have chest drain tubes in to relieve the bleeding and this also allows for them to measure the amount of bleeding.  Caden will remain completely sedated for at least another 6-8 hours and on the respirator (breathing machine) until tomorrow sometime.  

I will post more technical details on the surgery later, but the basics are that Caden did get the Ross Procedure and does have a donor (human tissue) in the place of his pulmonary valve and the pulmonary valve was moved over to the aorta.  The pacemaker was removed using only one extra incision near the waist line and there are no signs of needing a pacemaker moving forward. PRAISE GOD!!!

Prayer

Praise and Thanks

• Caden’s Continued Stability 
• No fever or infections
• That the surgeon’s hands have been used as instruments for God’s healing
• Technology and skills that makes heart surgery possible
• Health insurance and Tefra Medicaid!
• Donated annual leave (over 100 hours donated by my coworkers)
• Nana’s recent retirement that allows her to stay with Riley and JJ
• A super strong support system at Seacoast and within the GrowingKids Community **

**Support System: It has been like a Seacoast and GrowingKids conference at MUSC today.  Thank You to all who have come, called, twittered, and emailed to love on us today!!  There is nothing more comforting than being held in the firm hand of the body of Christ.

Prayer Requests

• Continued healing and mending of all incisions made on arteries
• Continued protection from heart blocks
• Continued protection from infections and illness
• Whole body healing for Caden
• Protection for Caden while under the care of MUSC staff. 
• Continued discernment for the doctors and us.
• That we will be allowed as much access to Caden as possible to help with communication issues.
• Continued strength, rest, and peace for Sherry and me.
• Protection over all our boys’ emotions.

We have been told that Caden has been off the heart lung bypass for enarly two hours, but was experiencing some bleeding.  They have been delaying closing Caden’s chest until bleeding was under control.

Praise God!!! While typing this post we got a page that Caden is in the PCICU and the surgeon will be out to talk with us shortly.  I will update with status later.

Caden is very stable.  We just got our 3rd update from the operating room.  The surgeon is moving forward with the Ross Procedureto replace the aortic valve.  This greatly lengthens the time in the operating room to approximately 12 hours.  That said we should not expect Caden out of surgery until 6pm or later tonight. 

As you will see from the link above, the Ross Procedure introduces a significant amount of work on multiple artieries attached to the heart.  Below is our most current prayer requests:

Prayer

(New and reemphasized requests in BOLD)

Praise and Thanks

• Caden’s Continued Stability 
• No fever or infections
• Technology and skills that makes heart surgery possible
• Health insurance and Tefra Medicaid!
• Donated annual leave (over 100 hours donated by my coworkers)
• Nana’s recent retirement that allows her to stay with Riley and JJ
• A super strong support system at Seacoast and within the GrowingKids Community

Prayer Requests

• Healing and mending of all incisions made on arteries
• That the surgeon’s hands will be used as instruments for God’s healing
• Protection from heart blocks
• Continued protection from infections and illness
• Whole body healing for Caden
• Protection for Caden while under the care of MUSC staff.  Continued discernment for the doctors and us.
• That we will be allowed as much access to Caden as possible to help with communication issues.
• Continued strength, rest, and peace for Sherry and me.
• Protection over all our boys’ emotions.

Caden is very stable.  They are just now putting Caden on heart lung bypass at a few minutes after 9am 9/22/08.  The nurse practitioner said that updates will be coming about once per hour until they are finished with surgery.  We have been issued a pager that allows them to update us directly from the operating room.

Caden was very “comfortable” when the anesthesiologist took him back this morning to surgery.  They gave him some medicine (versd) in his g-tube to help calm him down and make him drowsy.  It worked well.

We should know about whether they will be doing the valve repalcement (Ross Procedure) within the next couple of hours.  The anesthesiaologist says the Ross Procedure will make the surgery time last nearly 12 hours.  The surgery should be only six hours of the Ross Procedure is not required.

Please refer to previous posts for more information and specific prayer requests:

Heart Surgery Details

We have been instructed to have Caden at the surgery check-in area of the main hospital of MUSC at 5:30am on Monday 9/22/08. The surgery will be performed on the 4th floor of the main building of MUSC and Caden will be transferred to the PCICU (pediatric cardiology intensive care unit) on the same floor. The PCICU is the only children’s ICU in the main (adult) hospital building at MUSC. Based on our conversations, the surgery should begin at 7:30am and take approximately 6 hours to complete. The best case and expected scenario is that Caden will spend 2-3 days recovering in the PCICU and then another 2-3 days on “the floor” (7C of the Children’s Hospital).

Caden spent most of today (Friday 9/18) in the pediatric cardiology same-day care at MUSC Children’s Hospital. Sherry and I joined Caden while my mom (Nana) spent the day with Riley and Josiah at home. The tests performed today included a standard physical, an EKG, echo cardiogram, chest x-ray, and blood work. We met with the cardiothorasic surgeon and many of the support staff that will be assisting with the surgery and follow on care.

Surgery Details

1. Removing the pacemaker

This procedure is pretty much summed up in the title. The surgeon will use the main incision (same as the one used during surgery at six days old) down the middle of the chest to access the pacemaker lead. He will have to make a separate incision to remove the pacemaker generator device which is located near Caden’s waist line. The major risk factor is the proximity of the lead to the phrenic nerve (controls the diaphragm).

2. Repairing narrowing of the aorta just above the coronary arteries

The description of this was a bit of a surprise to us today. We understood that the narrowing that has been discussed as being the cause of the hypertrophy (thickening of left heart muscle) was immediately above the aortic valve. As we have learned today, there is some narrowing just above the aortic valve, but the hypertrophy has primarily been caused by narrowing up above the coronary arteries. The extent of the repair of this will involve splitting the aorta vertically (lengthwise) in the area of the narrowing, and then placing a patch over the expanded incision so that the result is a larger diameter aorta in that area. The patch used for this is foreign tissue.

3. Repairing or Replacing the aortic valve

This could become the most complex portion of the surgical process and could lengthen the surgery time well beyond the estimated six hours listed above.

Aortic Valve Repair Option

The repair is what the surgeon will consider if the bicuspid aortic valve has some stickiness to the leaflets. There is a chance that the pressure gradient measured across the aortic valve could be caused by the little shutters being partially fused or grown together. In this case the surgeon would simply cut the tissue that is causing the valve leaflets to stick. This option would not significantly lengthen the surgery time.

Aortic Valve Replacement Option

The surgeon will determine whether or not this option will be done based on measuring the diameter of Caden’s aortic valve and comparing it to children of his size. If the diameter is smaller, he may go forward with the replacement of the valve. I have explained this procedure before. The Ross Procedure is the safest and most effective way to replace an aortic valve in a small child and is really the only option for Caden’s case. Back in May I explained it this way:

“…a Ross Procedure on Caden which is a bit more complicated than only replacing the aortic valve. I will try to explain the details, but just in case here is a link to a very good description with graphics. This procedure basically involves switching the pulmonary valve over into the place of the defective aortic valve (higher pressure) location and then adding a foreign valve in place of the lower pressure pulmonary valve location.”

The fact that the Ross is “a bit more complicated” of a procedure could lengthen the surgery time beyond the six hour estimate. This option also raises the risk level of the surgery over all because the aorta, pulmonary artery, and coronary arteries must be cut and the reattached. The surgeon must also determine how much of a factor the valve is playing in causing the hypertrophy (in combination with the other narrowing).

Updates will be provided when possible on this site. Our first update from the surgeon is expected to be at approximately 9:00am on Monday.

Prayer

Many people have responded to me with “I will be praying for Caden”. Thank you! Please do just that because that is the best thing you can do for Caden and our family. I want to give you some specifics to help you pray for Caden.

Praise and Thanks

• Rapid scheduling for this surgery
• No fever or infections
• Technology and skills that makes heart surgery possible
• Health insurance and Tefra Medicaid!
• Donated annual leave (over 100 hours donated by my coworkers)
• Nana’s recent retirement that allows her to stay with Riley and JJ
• A super strong support system at Seacoast and within the GrowingKids Community

Prayer Requests

• Whole body healing for Caden
• Continued protection from infections and illness
• Protection for Caden while under the care of MUSC staff.  That the surgeon’s hands will be used as instruments for God’s healing.
• Continued discernment for the doctors and us.
• That we will be allowed as much access to Caden as possible to help with communication issues.
• Continued strength, rest, and peace for Sherry and me.
• Protection over all our boys’ emotions.

It is amazing to watch how God brings all things together for good!  Thank you for your prayer and support for our family. Blessings to you and yours!

We got the call this morning that Caden is on the schedule for open heart surgery on Monday, September 22. This will be an aortic valve repair/replacement and pacemaker removal.

We will be at MUSC pretty much all day tomorrow 9/19 for pre-op work up. Caden will probably not be admitted until just before surgery on Monday. I will provide more updates as information becomes available. I highly recommend that you subscribe in the sidebar or follow my twitter account (http://twitter.com/theozz) for the most up to date information.

More details to follow once we meet with the surgeon tomorrow.

Your love and prayers for our family are felt and greatly appreciated.

Blessings to you and yours!

Caden was discharged this evening. The surgery was cancelled for a couple of reasons. The first reason is that all surgeries at MUSC are cancelled for Friday 9/5/2008 due to potential tropical storm conditions along the SC coast.

The second reason Caden will not have this ENT and general peds surgery is that the cardiologist has recommended that these surgical procedures not be done. They have conversed with the ENT surgeon and general surgeon to determine that the procedures are not critical enough to outweigh the risks of having Caden under anesthesia. The cardiologist sees Caden’s current heart condition as being so fragile that they do not want Caden to undergo anesthesia unless absolutely necessary. They say that if Caden were to go under anesthesia that they would want the cardiology team on standby with an ECMO (heart-lung bypass) machine in the operating room. They basically say that Caden’s heart (the left ventricle in particular) is running at capacity and would not be able to produce more blood flow if something were to go wrong during one of these ENT or general surgery procedures. A problem during surgery could require Caden to go onto ECMO until the left heart output repair could be completed. Did I mention that Caden’s heart case is very complex and his cardio-thorasic surgeon is out of the country during the first half of September? Enough said.

I do want to clarify that the primary care team discharged Caden today because of the great improvement he has made since starting the Rocephin shots. Caden was sent home with a 21 day round of antibiotics to help protect him from infections between now and the scheduled heart surgery.

There are more details that I could share, but we both might fall asleep. I am wiped out and headed to my comfortable bed for only the second night in more than ten days.

Heart surgery is stll on for October 15th if we are not able to get worked in on September 22nd. Stay tuned as we get closer to the 22nd.

Thank you for your continued prayers.  God is good!!

I just signed the release for surgery on Friday morning. The general surgeons will explore the area next to the g-tube to determine if there is any internal infection. They will determine at that time if there is a need to move the g-tube site. ENT has been contacted and will be allowed to replace the missing ear tube and get a swab of Caden’s sinuses. The CT scan of Caden’s sinuses from earlier this week showed signs of chronic sinusitis and they want to get a culture of that area.

The recovery time will be one to two days. That said we will be here up into the weekend as previously suspected.

Prayer Requests:

* Surgery without complications
* Whole body healing for Caden, as always
* Continued protection from infections, colds, and all illnesses
* Continued discernment for the doctors and us
* Continued rest, strength, and peace for Sherry and me
* Protection over all our boys’ emotions
* Protection of our family and home as TS Hanna approaches