I actually started this post a few days after Easter. It was going to be sort of an update after the hospital discharge. Other priorities got in the way and here I am finally posting weeks later. The delay actually caused a titled change that was originally focusing on the sixteen shots Caden go in just over a week. He got 14 Rocephion shots and 2 Synagis shots. I’ll get back to that in a minute or two.
Orthopedics Visit
If you can’t tell from the photo, the biggest news is that we had a six month follow up appointment with orthopedics at MUSC recently. What you see in the image is a picture taken of Caden from the front in a standing position. The radiology report says that this x-ray shows a 54 degree curve. That is up from 37 degrees seen less than six months ago. I know I told you that the last report was only 35 degrees. That confusion is a great lead into my next section.
Preparing for CHOP visit
The recent orthopeds visit has caused us to move quickly to get into CHOP (Children’s Hospital of Philadelphia) for a second opinion. There are two major reasons to pick CHOP as a second opinion on the Scoliosis diagnosis. First, they have a 22q and You clinic, which has made the world leader in dealing with the 22q11.2 deletion diagnosis. The second reason is that CHOP is ranked number one in two separate rankings for children’s hospitals from US News and World Report and Child magazine. We have been gathering records and filling out intake forms for more than a week now.
The reason for wanting a second opinion is that we are not 100% comfortable with the communication between the orthopedics doctor and us. He is not quite as forthcoming with information as we prefer to have. The information has varied with little to no explanation. For instance, the post in October talked at length about our misunderstanding of the severity of the curve. Even with the “corrected” information, we have now found from Caden’s records that the numbers in the radiology record do not match the mistaken number of 40 degrees or the corrected number 35 degrees. Another reason we have decided to look elsewhere for opinions on this diagnosis could border on gossip if I shared them, so I won’t.
The bottom line is that orthopeds at MUSC is recommending immediate surgical intervention to place growing rods, if an MRI confirms that Caden’s spine can take the stretching caused by the rods. The need for an MRI gets us back to our pacemaker dilemma. As you can also see from the x-ray, the pacemaker is still right where the cardiothorasic surgeon left it back in June 2006. The device has not worked since July 2006 and has been a barrier to getting an MRI. Research says that you should not get an MRI with a pacing device or associated wiring in place. If you have ever taken a physical science or physics class you have probably experimented with magnetism and wires. The magnetism causes one of two things when moved across a wire, heat or electrical current. Neither is a good thing when the wire is attached to the heart.
What we are hoping for is a way to avoid a heart surgery just to remove a malfunctioning pacemaker simply to get an MRI so we can see if back surgery is even a possible treatment for the curve. If you are wondering if bracing has been considered, it has. We have been told that bracing will not correct a curve but will help to slow or possibly stop further progression. The bracing solutions are a bit complicated for Caden since he is very active and exclusively tube fed through a port that is in the way of bracing. The x-ray picture above actually shows the g-tube port immediately to the left of the spine at the bottom of the rib cage.
I will try to do better about posting updates as the trip to CHOP nears. We are hoping for an early May visit. Based on travel costs I am planning to take a train to Philly. Caden would love it and it is the only way for me to be able to properly care for Caden and travel for such a long distance economically. CHOP supposedly has a deal with American Airlines, but I have not got the details on cost. If we decide to take the whole Gang of Ozz’s a train is the most economical choice without driving. I would not want to ride with me in a car for 12 hours and I know Sherry wouldn’t either.
Post hospital report – Goobers AGAIN?
We suspect that Caden picked up a bug when out with Nana this past weekend or when we all went out to eat after church. Maybe it is the season change with all the junk floating in the air, but the amount of suctioning caused by goobers has certainly increased in recent days. This happened a few days after Easter, but seemed to clear up. Now its back. Up until Easter Caden had a pretty good week. The post hospitalization was quite a fiasco, but I will get to that in a minute. Caden has had some fever this week with a ton of stuff to suction. A couple of weeks ago he responded well to OTC fever meds, but ended up waking about three hours after he going to bed coughing and ganging on the secretions. The stuff was so deep in his throat that the suctioning was really tough. Please pray that this current congestion stuff and fever passes rapidly like the last spell.
The caveat portion of the discharge from the hospital a few weeks ago actually ended up being a circus. Caden was discharged on a Wednesday afternoon. I flew back to DC on Thursday morning. Sherry had to take Caden to the pediatrician Thursday and Friday of that week to get the Rocephion shots (2 – one in each leg). I returned home on Friday night. At that point Sherry had acquired the needles, syringes, and the medication for the weekend, and she even got an RN friend from church lined up to come give the medication to Caden. BUT Sherry could not get sterile water or lidocaine. No one had it in stock. She found a health supply store that said they had it, but it ended up being sterile water for oral use only. You need sterile water or lidocaine to reconstitute the Rocephion from a powder into a liquid. The lidocaine is preferred because it can help numb the area where the meds enters the muscle tissue. We also had topical lidocaine cream to put on 20 minutes prior to the shots due to the extreme pain caused by this medication.
Anyway, I ended up having to take Caden to MUSC to the ER. This visit would not rate in my top ten ER visits, and yes I have done enough ER visits to MUSC Children’s to have a top ten. Even with a less than stellar visit over all, the ER nurse slipped me some sterile water so that we could get the shots at home on Sunday and avoid another ER visit. Our friend Shannon came over after church and administered the shots. Since the medication was mixed with water rather than lidocaine, Sherry saw the difference in pain reaction when Caden got the shots. He screamed violently for several minutes. This was not your regular “I upset because I have been poked again” type of cry. Sherry and I have witnessed him get dozens of shots, IVs, and blood draws over the years and he never screamed and squired like this minutes after the shot had been given. Fortunately the Sunday shots were the last ones in the seven day regiment.
Cardiology on the horizon
We have a six month check up with cardiology in a couple of weeks. We are hoping and praying for a good report out of Cardiology. The cardiologist want to keep an eye on Caden’s aortic valve which was diagnosis as being bicuspid. They reported an increase in the pressure gradient during the last six month visit while means they come closer to a recommendation of valve replacement.
Prayer Requests
I want to start this prayer request section by stating that I firmly believe in healing prayer. Sherry and I completed the School of Healing Prayer® Level I last year. Through that we learned that healing does not come immediately in very many instances.
“Jesus Christ is the same yesterday and today and forever.” Hebrews 13:8
Contrary to what many pastors preach, God is still in the business of healing by the power of the Holy Spirit. God has been in the business of healing and miracles through the hands of his people throughout the Old Testament, New Testament, and He is still in the business today. Just like when the miracles were performed at the hands of many in the Old Testament and then those performed by Jesus, His disciples, and many others like Paul in the New Testament, there will be those who witness miracles first hand today and still will not believe. There will be many people who will claim medical error during diagnosis or something happening by chance before they will give credit to the Almighty God. I pray that you are not among them. Please join me in lifting our little boy up in prayer. As Pastor Shawn put it this past weekend when referring to the four men in Luke 5 who lowered their paralytic friend on a mat through the roof of the house in front of Jesus, and I am paraphrasing here, “the one on the mat received healing based on the faith of those who went out of their way to carrying him up on the roof.” We can carry Caden and lower him down in front of Jesus with our prayers.
Please Pray for:
- Caden to be completely healed
- A good report from Cardiology
- Planning for CHOP visit to go smooth
- Potty training
- Increased communication skills
- Rest for all in our family
PS: Sherry has begun to blog on GrowingKids.org. She recently wrote the introduction post to a new series of posts on Structure and Routine.