Tuesday, February 28, 2006


Someone asked me yesterday how the clinics went last week and I realized I never posted an update. Sorry! The majority of the news was great (especially about the meds!!!)...but the ears are presenting some issues. Here are the highlights:

Many CHARGE kiddos have issues with extra fluid in their ear due to malformations throughout the ear canal. I have been very concerned with this (Max's MRI did show malformation throughout the inner and middle ear) and constantly am asking the doctors to double check his ears. Sure enough, the ENT checked and this time there is definitely fluid. This causes additional temporary hearing loss and can cause damage to the ear if untreated for a long period of time.

Since this is the first time they have detected fluid, we are going to wait on any surgicial intervention and check again in a few months. Usually this is a fairly simple procedure, however the decision is a little more complicated with Maxwell. If we decide to move forward with tubes, there could end up being a problem with excess discharge which would impact his ability to wear his hearing aides. Usually there is only a 2-3% chance of this, but because of his "craniofacial differences", the likelihood is much higher.

We got the newest set of ear molds and his own personal hearing aides. They too are at a lost on how to keep the aides in his ears better. We are just hoping this improves as his head control increases.

This is an area that we are pretty fortunate. The nose has remained open, which is incredible. One nare appears to be slightly narrowing and we are just going to keep an eye on it for now to make sure it doesn't narrow any further. Hopefully it would not result in a trip to the OR, just a dilation during a outpatient visit. While it is a very painful procedure, he can be sedated and hopefully sent home the same day.

The other issue is keeping his nose clear...frustrating. (But I try not to complain, because we are so lucky that his nose is staying pretty much open. Some kiddos require 10 operations to finally get it right...so far we have only had three, but then again he is only eight months old!!!)

I am putting a call into ENT this morning to see what they suggest about his nose secretions. His O2 canula dries out his nose and makes his nose and "secretions" (aka snot) very very dry and sensitive. He doesn't get runny noses, it just stays in there so I have to suction him frequently...but it never really works that well because everything is so dry. We use nasal spray throughout the day (which Max despises) and several humidifiers to keep everything as moist as possible.

Yay!!! This is very, very exciting news. There has been talk for the past month about possibly taking off some his meds and so this week we are in the trial process. Cardiology and pulmonology agreed to try him off one of his major diuretics which lets us also take off potassium and calcium. We did a blood test yesterday at the hospital and will have results today to see if his electrolytes are balanced and we can proceed without the meds. Max gets his blood drawn about every other week and it is never fun. His veins are very small and fragile and it always takes numerous attempts and usually doesn't work. They typically end up doing a heel poke and just force the blood out. Yesterday we were in "the chair" for over an hour while they tried everything. I hold him, they poke him, and he cries. Oh how he cries...very very sad. Fortunately he gets over it fairly soon afterwards. He's one tough guy.

All in all, a pretty good day at Children's. We will possibly be making another trip later this week for a swallow study. I promise to keep you posted! :)


Anonymous said...

oh gosh my heart just bleeds for him. But I know the Craniofacial team at children's is wonderful.
We have Dr. Hopper (Plastic Surgeon), Dr. Perkins (Otolaryngology), and Dr. Williams (Dental), with Darcy King (ARNP)who has worked with my son who has Velocardiofacial Syndrome.

We are getting ready to do our next set of rounds down there doing a bone graft (Remove bone from hip to cleft gum)

You and Max keep fighting the good fight. Praying he can be removed from more meds.

kate said...

So glad to hear that things are going so well for Max at home! How busy you must be keeping up with all of his care. We can't wait for the day to have our boys playing together!! Our thoughts and prayers continue to be with you always.

Love, Kate and the boys! :)

Suzanne Holman said...

Maxwell, you are amazing!
You are really getting more and more in touch with your world and loving it!
Mama Amy has certainly led the way for you with her constant encouragement and enthusiasm for your progress.
As her mama, I am SO proud of both of you!!!!!