Sunday Night.

I am a little nervous for our appointment at the cleveland clinic tomorrow.  I can’t even put my finger on what I am so nervous about.  I guess you always have this fear that they are going to find something.  It will most likely be a long day.  We have a radiology appointment first (chest x-ray) and then we are going to have an EKG, possibly and echocardiogram, and then we will meet with Dr. Larry Latson.  I also have all my faith in this man to save Logan from another open heart surgery.  I am really hoping nothing changes once the whole exam is done. 

Logan has been a little cranky, I am not sure if it’s because of his progressing cyanosis or if he is teething.  Everything has started going in the mouth but no major drooling has started.  He does have labored breathing that is getting worse.  Even in the last week his breath has gotten more labored.  Not really sure if this makes him uncomfortable or not.  I would hate to feel out of breath all the time, but maybe he doesn’t know the difference.

We  found a food HE LOVES!!!

Who would ever have thought? Sweet potato, corn, and apple? Anyway, he ate half of one of these containers in one feeding!  This is to date the most he has ever eaten at one time.  He also later this evening drank 4 oz. of milk.  I know that doesn’t sound like much but for him this is a lot.  Usually he only drinks 2-3 oz.  He must be growing! That would be great since he still fits into some of newborn clothes. 

So see how Logan’s milk looks pink? That is not bad lighting his milk is pink.  Its filled with medicine.  In this particular bottle he has 5 medicines.  Sildenafil (Viagra), Captopril, Penicillin (for the asplenia), Lasix, and aspirin.  They are compounded with some flavoring which is why its pink.  He doesn’t seem to mind it at all.  And this way he doesn’t get the stress of having syringes of medicines forced into his mouth.

 

This was one of THE BIG KEYS to helping get him over his oral aversions.   Forcing syringe and syringe of medicines in his mouth made he him not want to eat at all.  For those of you that don’t have children with congenital heart disease, feeding is one of the biggest challenges these kids have.  We have been very fortunate so far.  He breastfed for 6 months and we have had no feeding tubes (other than at birth for a couple of weeks).  This is not the norm.  Typically feeding becomes a very big issue and many cardiac kids have to have surgically placed G-tubes into their stomachs for feedings.  I am so thankful that we have a doctor that supports our trying our darndest to do this the natural way. 

As soon as I get any news I will post either on here or on Logan’s facebook page (usually I post on there quickly and with less detail when I have time.)

3 thoughts on “Sunday Night.”

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