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