Caden’s Page

Caden went in for a post op appointment today just nine days after open-heart surgery. He was given two thumbs up by the cardiologist. They looked him over pretty carefully including performing an echo cardiogram. The echo looked great and all of Caden’s numbers O2 sats, blood pressure, and heart rate were all good.

The itchiness that Caden was experiencing is now much better. The last of the steri-strips were removed today during the cardiologist visit and that seems to have helped the itching a lot. Caden also had the last of his non-desolving stitches removed. There were only two where the chest drain tubes were removed last week. The stitches for the chest cavity and the area where the pacemaker was removed have self-desolving stitches.

Caden will be restricted from certain physical activities until the beginning of November. For instance, Caden cannot participate in physical therapy for the next month. He cannot be lifted from under the arms because the chest bone tissue needs to mend and right now it is only held together by a few twisted wires. Caden can go back to speech and occupational therapy (fine motor) immediately. We were told to allow him to do what he feels comfortable with at home, but do not push him.

Caden has been having trouble with feedings since surgery. We cut the rate at which the pump delivers food through the g-tube but that has provided limited relief. We have not cut back on the amount of formula other than to stop the afternoon snack that we were giving Caden. He has shown irritation at a majority of his feedings since surgery. I suspect that Caden’s body is working a little harder on healing his heart right now and his digestive system has not quite got back to 100% yet. Please continue to pray for Caden’s whole body healing and comfort.

Prayer

Praise and Thanks

• Caden’s Rapid recovery
• 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 our family
• A super strong support system at Seacoast and within the GrowingKids Community **

**Support System: Thank You again to all who have come, called, twittered, emailed or cooked for us this week!! There is nothing more comforting than being held in the firm hand of the body of Christ.

Prayer Requests

• Comfort and ease of digestion during feedings
• Continued healing and mending of all incisions made on Caden (he is still sore)
• Continued protection from infections and illness
• Whole body healing for Caden
• Continued strength, rest, and peace for Sherry and me.
• Protection over all our family’s health.

Caden continues to do great. His activity level continues to increase and as well as the frequency of smiles. The following picture was captured today while Caden was entertaining himself with a little musical instrument.

The above picture does show some indications of one of Caden’s largest problems which is a very itchy rash that popped up as a reaction to some of the tape used on Caden. The red streaks on Caden’s face were caused by the tape that was used to hold the respirator tube in place during and after surgery.

The picture below shows the irritation cased by the sticky coverings that were used to cover the incisions. Caden has been constantly itching the incision on his chest. You may be able to see at the top near his neck, there is an area that resembles an inflamed insect sting. (Click image for larger copy)

All that said, we ask that you pray for Caden’s continued comfort and healing. He is healing nicely but very uncomfortable due to the itching.

Caden arrived home at approximately 1:00pm this afternoon (Friday 9/26). PRAISE GOD!

So how does a kid go from the picture on the left (taken Monday 9/22) just after leaving the operating room where he received a major open heart surgery to the picture on the right (taken Friday 9/26) in just four days?  I like a phrase that Pastor Greg shared a few years back when repeating what a fellow church member used to say in describing herself no matter what her circumstances. Caden is “blessed and highly favored”.  Caden and our family is supported by a worldwide network of prayer warriors that love God and who know He is bigger than anything we can possibly face.  Our good friend Anne Marie Ezzo reminded us on Tuesday just how far reaching the GFI (GrowingKids) prayer ministry goes.  Below is small sample of those prayer warriors praying with Sherry and me in the waiting room just a few minutes after the photo above on the left was taken just four days ago.

We are so grateful for your prayers and support for our family.  Please continue to prayer for the following:

Prayer

Praise and Thanks

• Caden’s Rapid recovery
• 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 our family
• A super strong support system at Seacoast and within the GrowingKids Community **

**Support System: Thank You again to all who have come, called, twittered, emailed or cooked for us this week!!  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 Caden (he is sore)
• Continued protection from infections and illness
• Whole body healing for Caden
• Continued strength, rest, and peace for Sherry and me.
• Protection over all our family’s health.

A room came available and we were moved to 7C just before lunch time today (Thursday).  We are on the 7th floor of the Children’s Hospital, room 784.  We are blessed with our favorite nurse that has known Caden from birth.  She even remembered Riley’s name!

We are enjoying the freedoms of being out of the ICU.  Riley has been able to see Caden for the first time today and you can tell it lifted both boys’ spirits.  I’m sure Josiah will visit soon too!

Caden still has the one chest drain tube and the pacing leads.  We expect them to come out today.  His pain has been managed well with Oxicodone, Tylenol, and Toridol.  I don’t believe he’s had any heavy stuff-Morphine- for the past 24 hours.

Please cover Caden in prayer specifically in the area of infection and fever.  He ran a 101.8 fever this morning and currently feels like he’s warming up.  The cardiologists do not believe the fever has anything to do with his heart but rather his sinuses.  He was discharged Sept. 4th with a 21 day supply of Vantin (an antibiotic that he’s never received before).  They suspended giving that to him over the last few days and gave him instead IV antibiotics of some type.  He received the last dose of the IV antibiotics yesterday afternoon and the decision was made to put him back on the Vantin to finish out that 21 day course.  We just gave him the Vantin at noon today.  Perhaps the fever is because of the lapse between antibiotics… but he can’t live on antibiotics forever!  We plan on working with an allergist/immunologist to figure out the best way to manage all this sinus stuff.

Thank you all for your prayers!  They have been felt and answered in an amazing way!  I am reminded yet again, that God works everything for good.  He has placed us in several places to communicate His truth and hope to those who are just beginning on the road we started 4 years ago.  I am convinced that our extra day stay in the PCICU was for this very reason.  May God be glorified!

Love,

Sherry

Caden is doing really good today.  He is still requiring some pain management and has had a little difficulty with his tube feeds.  Nothing surprising at all.  Please pray for his continued healing, rest, and overall comfort.

The Problem

MUSC Children’s Hospital is overloaded with kids right now so we have been told to expect another night in the PCICU as a  result.  The pediatric cardiac step-down unit (7C) is completely full due to over flow kids from other units that are also full.  I am thankful to have this inconvenience to deal with as the big problem of the week, but it is a problem.  Caden does not communicate well and hospital staff do not always “get it” when we warn then that Caden is NPO. (nothing by mouth)

While the PCICU is not designed for overnight parent they do make exceptions.  The problem is that not every staff member on every shift agrees with the exceptions especially if the person on your current shift was not involved in the exception conversation.  Nothing like this is ever done in writing by the way.  And let me just say that the PCICU staff last night did not make the stay easy on Sherry and me.  Sherry is a bit upset over the room situation and asked that I post a prayer request for this situation to be resolved.  Staying in the PCICU is not the worse thing in the world, but a roll-away bed or a chair that reclines would be an outstanding gesture of compassion towards us.

I am home and going to bed so that I can go back to relieve Sherry late this evening.  We may have to stay upright and at least appear to be awake to be allowed to remain in the PCICU with Caden overnight.

I am sneaking a quick post using the browser on my Blackberry to share the great news. Caden has been cleared to move out of the ICU and into the step-down unit. We are just waiting on a bed. I will post a room number once we get moved.

Caden only has a chest drain tube and an IV site left to be removed. He is still getting a slight amount of oxygen (1/4 liter). The iv is not being used. OH…he does still have the jumper cables. These are the pacing leads that most all kids come out of surgery with.

I did get to hold Caden this morning but I don’t think he enjoyed it as much as he thought he would. He seems pretty sore.

Will post update when we get moved.

I tried to get back into the PCICU after shift and was DENIED access.  Caden’s nurse sent a messenger out to tell me that they were removing lines.  I am assuming that means both the arterial and central lines mentioned yesterday.  This will give Caden great joy.  He has been asking to be held since yesterday and they won’t allow that until the arterial line is out. This is also a natural progression towards moving out of the ICU, hopefully later today.

Sherry is home sleeping.  She sent me home last night to get some sleep and she stayed until I got back at 5am this morning.  Sherry said that Caden did not get much rest through the night due to the comings and goings of the ICU staff last night.

I will try to update as soon as we get moved out of the ICU so folks know where to find us.

Caden was taken off the respirator at about 10am this morning (Tues. 9/23) and he has had one chest drain tube removed.  He has been awake some today and has been responding to Sherry and me by nodding his head and signing with the one hand that does not have a line in it.  He has an arterial line in his right hand and a central line in the right side of his neck. These lines are expected to be removed tomorrow according to the latest word from the cardiology team.  Oh…they took out the foley/catheter and are weaning off of all IV meds.  They are starting the first g-tube feeding tonight, but it will be a partial feeding.

Caden the day before surgery

Caden just after surgery on 9/22

Caden the day after surgery 9/23

I apologize for taking so long to update today.  I have ended up in several detailed conversations with other families who are dealing with some very tough situations.  One family is basically saying their goodbyes to their 15 month old and another family is struggling with botched test results that will take up to two weeks repeat. We are currently out for the evening shift change of the nursing staff. Caden is doing very well this evening.

My mom brought Riley and Josiah down to the hospital today so we could visit with them in the waiting room. Riley requested to see Caden, but was not allowed into the PCICU. Riley cried because he could not see Caden and then Caden cried when we told him that his brother wanted to see him but would not be allowed until we go to a room on the step-down unit (7C).

Please pray for me to have favor with the PCICU staff as I stay over night.  They are not fully sedating Caden any longer and we do not want to leave him without one of us near by.  He will likely be moved to 7C sometime tomorrow.

I talked to Caden’s nurse at about 5:30 this morning and Caden had a good night.  There were a few spells of Caden trying to wake up, but nothing too exciting.  “Nothing too exciting” is what you want in the first 24 hours after a day like yesterday.  The nurse full expects Caden to be removed from the respirator this morning and be allowed to wake up.  Sherry and I came home last night to get some good rest per the doctor’s recommendations and our bodies fatigue.  We both slept pretty good knowing the next couple of days will be spent in the hospital at Caden’s side once he is conscious.

Sherry and I are headed out to be at the hospital when shift change ends in the PCICU.  We will report more later today as Caden progresses.

Thank you for your love and support for our family!