I haven't posted here in quite some time, but thankfully we haven't had much to share until today. This week we visited MUSC ENT for both of the kids.
Harlie's Update:
Several years ago Harlie had a hole in her eardrum. She had a tempanoplasty done to repair the hole, only to have another one done about a year later. Now the hole is back (40-50% of the eardrum is gone) and her hearing is being impacted more significantly. We requested to be referred to MUSC to get their opinion about how we should treat. We met with her surgeon on Monday and he has recommended that we go ahead and repair with a larger patch that will essentially cover the entire ear drum. He also said that they will do a mastoidectomy that will remove some of the porous bone behind her ear. This time they will also go in from behind the ear to allow better access to the eardrum rather than going in through the ear canal. This will make recovery time a little longer. She will have 2 weeks of restricted activity. Because of this we are waiting until the summer, so she doesn't have to miss any school. We are hopeful that this will be the permanent fix for this ear.
Mac's Update:
Back before Thanksgiving we saw an ENT in the upstate about Mac's recurring Croup and that lead to having a swallow study in December. During the swallow study Mac aspirated on thin liquids. Since then he has been learning compensatory strategies to help him drink safely. Our upstate ENT requested that we do a sedated Bronchcoscopy that would allow them to get a better look below his vocal chords to see if there was any damage from previous intubation. We are not comfortable with sedated procedures in the upstate though because GHS just doesn't have the resources available for our cardiac kids. For this reason we requested that we be referred to MUSC for the procedure. Today we met with the ENT down in Charleston to discuss his thoughts about what our next step should be. After looking at the records from the upstate and seeing Mac today, he explained to us that there could be a leryangeal cleft, a gap that allows liquid to get into his airway. It is not something we can see with the in office scope. The plan is to go in during the broncoscopy and measure that area. If there is a gap, they will inject a filler into it to help close off that area. They will also take a look to be sure that there is nothing below the voicebox area that needs to be addressed. He did say that based on what we shared and what he saw from upstate notes that he didn't think that was a concern for Mac.
We are trying to get both procedures scheduled for the same week in June so that we don't have to make multiple trips down over the summer. Please pray that we are making the right decisions for the care of both of our kids. Please pray that both procedures will go even better than the doctors anticipate and they will both be able to move forward from these procedures with excellent health and be able to enjoy life to the fullest! As always, thank you for your prayers for our family.
