We have a change of plans for Caden’s upcoming surgery date, and it looks like my suspicions about the manometry were valid. One of Caden’s speech therapists issued the following in an email to Caden’s ENT doctor.
“I have talked at great length to people in the know about manometry for assessing esophageal motility. When done, this is generally done to evaluate the LES. It is rarely done on children as it takes a good deal of cooperation. Furthermore, it is the opinion of those who do these studies that we will only learn what we know already – the UES does not relax.
Now, when I asked myself how the palate could influence the necessary pressures for swallow, myself was a bit mystified as children with huge clefts of the palate are able to swallow without difficulty. However, the palate is only one piece of the velopharyngeal sphincter with the role of the middle constrictor playing a major part. We know that individuals with 22q11.2 deletion have very poor lateral pharyngeal wall function, hence the better speech results with sphincterplasty than pharyngel flap. It is not a far stretch to think that, in Caden’s case, the tone of the middle constrictor is REALLY poor as all of his muscle tone is REALLY poor – even more so than generally found in this population. Sooooo, would we have a better chance to impact both Caden’s ability to establish oral pressures and, just maybe, his swallow function if we did a sphincterplasty (a good tight one at that) rather than a Z plasty?”
I realize there is a bunch of medical mumbo jumbo today that may not make much sense. What it boils down to is a different surgery. We (Sherry and I) agreed with the speech therapist. The ENT has also agreed with this line of thinking. Caden could have ended up getting a sphincterplasty in the future anyway. The thinking is that this surgery might have a better chance of aiding Caden with his swallowing in addition to correcting some speech issues. We are still planning to get some botox in Caden’s saliva glands and possibly get some botox in the UES (upper esophagus sphincter). By the way, the MBS (Modified barium swallow) done two weeks ago showed absolutely no improvement in swallowing functionality. For those of you who are new with Caden’s page, he has never taken a single meal by mouth. At two and a half year old, he gets all of his nutrition, medications, and hydration through a g-tube.
Caden has had a rough few days with secretions. There has been lots of suctioning and he has had some discomfort with tube feeds. He also had a little fever a couple of nights ago. Update…After posting this late Saturday night, Caden popped another fever in the middle of the night. He also required suctioning throughout most of the night due to excessive sections that would gag him.
Pray for Caden’s Nana
Caden’s Nana (my mom, Priscilla) will be going in for a heart cath on Monday morning in Columbia, SC. Her doctors say they have detected a need for a possible angioplasty and maybe stints. I will be in Columbia Monday along with my sister. Please keep her in your prayers. Pray that this cath will show that the healing has already occurred. Do you remember the cath that Caden had last year? That was an awesome display of God’s healing power. Pray for my safe travel to Columbia and back. Also pray that this procedure will remain an outpatient event for my mom as planned and pray for a rapid recovery of the wound created where the catheter is inserted.
Help Wanted Needed
As we near the delivery date for the newest member of the Osborne clan, we see a possible need in our circumstances. Caden still travels with some pretty unique pieces of equipment compared to the average kid his age. That equipment is not difficult to operate, but does require a little training. Riley would probably answer most questions to problems that might arise. Caden himself even knows how to perform basic operations of the feeding pump even though he does not have the freedom to use those skills just yet.
When the baby is born, my presence will be required in the operating room with Sherry. (planned c-section) In the event the need for delivery comes in rapid fashion, we may need someone to watch Caden for a few hours (3-6 hours) until family can get to town or until one of our regular caregivers can get off their day job. We are asking for a few people to work with us over the next two months to become knowledgeable on Caden’s care. The basic requirements are as follows:
- You know Caden
- You can tolerate a lot of
snot and salivasecretions - You don’t mind dealing with some medical equipment (i.e., feeding pump and suction machine)
- You have a fairly flexible schedule for responding on short notice
- You can spend a little time with us to learn Caden’s needs
There is a real good chance you will not even be needed to watch Caden if the pregnancy goes until the planned c-section date in mid August. Please contact us via the email at osbornefamily@hoei.com if you are interested. Sherry and I both receive these emails.
Your continued prayers for Caden and our family are felt and appreciated. May God bless you and your family!