Caden’s Page

To God be the glory for all Caden’s success. This little boy is living proof of God’s power.

Caden was released from the hospital at about 5PM yesterday. He would have probably been released earlier but the doctor who had to make the final decision was in surgery most of the day.

Caden did have some more blood tests run while in the hospital. We took the opportunity on Monday to get some blood drawn for some lab work while Caden was under anesthesia. He is very hard to stick due to small and curvy veins. Several doctors needed tests run. We got all their lab orders together and had the blood drawn while Caden was unconscious to minimize his discomfort.

All of the tests came back looking pretty good. The only one that was border line was the immunology. The immunologist met with Sherry and me today to discuss the results. There seems to be very little research on kids with Caden’s immune disposition. Caden is technically considered to be partial DiGeorge simply because he does not have a severe immune deficiency. Caden is considered to have a mild to moderate immune deficiency. What this really means is that he is limited in the vaccines he can receive, non to date. We are waiting on a few more lab results before a recommendation is made to allow him to get live vaccines. (i.e., chicken pox, MMR) This is not a huge deal right now because those are not normally given at this early age anyway. There should also be some precautions taken when around other people who have had live vaccines recently. That includes the ones I just mentioned as well as some vaccines that are given to folks preparing to go into a war zone.

We do anticipate a trip to Duke in the near future. There is a doctor up there who is one of if not the world’s leading immunologist. She is the doctor who cared for the little girl whose Grandparents posted a comment on Caden’s Page on June 3rd. This little girl’s name is Hailey and she got to go home on Tuesday for the first time in months after being at Duke for a transplant. Her immune system was in much worse shape than Caden’s. Hailey is about a month older than Caden and was born in Boston where she had heart surgery shortly after birth as well.

We are also considering a trip to New Jersey before we talk to the ENT (Ear, Nose, and Throat) doctor about the possible botox treatment for Caden’s swallowing problems. There is a specialist that used to work at CHOP who now runs a pediatric feeding clinic in NJ. We will keep you posted on this as we get more information.

This has been a tough few days, but we believe that things are already better. Praise God that Caden has not seen a reflux since last weekend. Caden does have some retching spells, but they are milder than the ones he was experiencing before this surgery and they seem less frequent as well.

Please keep us in your prayers. We still have a few tough decisions to make and a ton of information to process. Just ask God to help us see though to the most important things to help us make the right decisions for Caden.

I don’t know why, but I feel inclined to say hello to Eric and Karen this morning. I think about you guys often and hope you are doing well. My thoughts and prayers are with you.

HO

I spoke with Caden’s doctor already this morning. Caden has tolerated two feedings overnight that were enough to sustain his normal diet. He shows a little discomfort near the end of these full feedings, but he is having no significant problems.

The doctors in charge of Caden’s care are meeting this morning to discuss his possible release later today.

Don’t forget to see the pictures from last night and the two postings form yesterday.

HO

Here is a preview of the pictures that I took tonight. Click on this picture below to go see the others.

Here is a MP3 audio file of Caden’s babbling from tonight as well.

Caden’s Voice (Fairly small at 138k)

I am sure the items above do a much better job than me at telling how Caden is doing tonight.

Caden is on his normal food mixture (formula and mom’s milk) at a lower amount than normal. We are slowly increasing it and should have him back to a full feeding amount by late morning tomorrow. Given his current progress, I would expect for him to be discharged no later than Friday if not tomorrow.

Caden has had a good night. He started on clear liquids last night via his g-tube. He has been getting an once every three hours just to make sure his system tolerates it. He seems to be doing fine with it and he will probably get some formula mixture later this morning.

I have been asked a couple of times why Sherry and I do not seize this opportunity to stay home and get some rest. Well, I have a story from yesterday that explains very clearly why we stay with Caden 24/7 while he is in the hospital. It was about 7pm last night when Caden’s nurse came though the door with pedialyte, bottle , and nipple in hand. She had been instructed by a doctor to give Caden his clear liquids by mouth. This doctor had never seen Caden before and the nurse had tried to explain to him that Caden was not able to swallow. He told her that his swallowing problem had been fixed and to give him the liquids and all of his medicine by mouth. He was wrong.

Sherry was standing by Caden’s bed when the nurse came in with the bottle and nipple in hand. Sherry’s eyes got very big and she asked what is that supposed to be for. The nurse explained and Sherry in turn asked to speak to this doctor. He came in a few minutes later with an “I am the doctor here and you should not question my judgment” attitude. Sherry tried to explain to him that the surgical procedure that Caden had this week was not to correct swallowing problems, but was rather only addressing the massive reflux problems. She explained that this surgical team was not even the people who Caden would see to get his swallowing problem treated. This doctor would hear nothing of it. He refused to change the order to feed Caden by mouth. He said that he needed to talk to the surgeon who knew and had been working with us. He said that for now he would go along with giving the fluids by g-tube since it would really make no difference in the process of testing how Caden’s stomach was going to react to the food. Just a note: This was not a student or resident. This was the attending physician on duty last night from pediatric surgery.

Sherry ran into this doctor on the way out of the hospital last night and he said that he had spoken to Caden’s regular surgeon over the phone and that things had been cleared up. He had removed the order from Caden’s record to give him things by mouth.

I still wanted a shot at him once I got here about an hour after all of this happened. I was not happy with how upset he had made Sherry. She was flushed red like she gets when she is extremely upset or nervous. I still plan to voice my displeasure with a senior member of his staff. He needs to realize that there are parents who know their children’s health better than their own. Ten years of education and even more on the job experience does not make you immune to making mistakes. In this case, his mistake could have easily caused Caden to aspirate and possibly get pneumonia.

This is a prime example as to why we stay with Caden even when he is hospitalized. He still needs to be suctioned at least every hour or two even when he is sleeping. His secretions collect in his throat and start to gag him if he is not suctioned out every so often. The nurses up here are assigned multiple patients and can not monitor Caden as much as it takes to make sure he does not aspirate on his secretions.

On a positive note Caden just went a five hour stretch without any pain medicine. He is allowed to get it as often as every two and a half hours. He has been resting good.

Sherry took time to go out to dinner with a group of mom’s from the church. They had to call and remind her due to all the excitement with the doctor last night.

Lesson for the day: No one is going to care for your child the way you do. Even the nurses who have likely spent more time with Caden than anyone else outside of our immediate family gave in to the pressure of the doctor yesterday.

Want to read more technical stuff? Here are some links:

Nissen fundoplication
Dysphagia
Achalasia (Possibly a better description of Caden’s swallowing problems than anything I have found.

Thanks again for your pray and support.

Caden had a pretty good night. He was restless at times and was given some pain medicine. He continues to go longer between the doses of pain medicine. His fever has gone down as well.

The surgical team just came by to check on Caden and they are pleased with his progress. He is on track to possibly get clear liquids in his stomach later today.

Caden’s surgery went well today. Things went pretty much as advertised and there were no major complications. Caden was awake and in his own room by about noon today. He is being given pain medicine at least every three hours to comfort him. He has a little bit of a fever that is most likely a side effect of a one of the medications that he received during surgery. Sherry and Aunt Addie are with Caden until later tonight. I will relieve them by 9pm and be staying with Caden through the night.

Caden was admitted to a room in the MUSC Children’s Hospital in the cardiac ward (7C). This is a comfortable place for us. There were three nurses and one technician on duty who recognized us when we came through the door. They know Caden well and are taking good care of him.

Thanks for your prayers and support. I will keep you posted.

We were contacted by MUSC yesterday as expected with scheduling information. Caden has a 6AM show time for Monday morning. They have him on the schedule from 6AM to 11:30AM. We believe this includes recovery room time. We will be at the 4th floor surgery waiting room of the main hospital at MUSC before and during the surgery. Caden should be in his own room in the children’s hospital by early afternoon.

We are very nervous. We are asking God to give us peace with the decision to get this procedure done. We know our biggest enemy here is fear. I continue to try and stand on one of my favorite Bible verses of all time,

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2 Timothy 1:7 (KJV)

Many of you have sent emails assuring us that you will be praying for Caden. I ask all to add Caden to your prayer lists at church this weekend especially for this surgery on Monday morning. This is considered a major surgery.

I will have an update posted when Caden gets out of surgery on Monday.

Thank you for your prayers and support.

Caden passed the official seven month mark on June 2nd. On that day he decided to grace us with a new talent. Caden rolled over from his back to his tummy. He got stuck on his tummy and started fussing, but he did do it with absolutely no help at all.

We had no nurse tonight, but it has been a quite day for Caden so far.

Riley continues to do a great job at keeping dry and going to the potty without reminders. He has been getting a new Matchbox car for every poop visit to the potty that he makes without having an accident. I bought a package of ten cars and I believe he has collected five of them since the weekend.

Blessing to you!

We finally had a nurse last night for the first time in over a week. This was the same nurse that we have had for one night per week for quite some time now. The nursing agencies we are working with continue to strike out with getting staff for us.

Caden is doing pretty good considering the amount of reflux he has had lately. His number of reflux episodes per day continues to be higher. It has been a solid two months since we saw a 24 hour period without Caden having reflux. He is actually averaging more like six episodes per day now which is up from an average of about four per day just a few weeks ago.

We have been told that Caden will be the first scheduled pediatric surgery on Monday morning at MUSC. We will not get a check-in time until tomorrow, but we expect it to be around 6 or 6:30 AM on Monday. Please keep Caden in your prayers especially on Monday morning. The surgery will NOT be laparoscopic like we originally thought. They will perform the Nissen Fundoplication as an open abdomen procedure. Caden is expected to be in the hospital for approximately two to four days as a result of this surgery.