AV Valve Repair update.

For about the last 3 weeks Logan has been fighting an upper respiratory illness.

 

He has been battling it pretty much since we got home.  It has been disappointing to see him not feeling that well after his Bi Directional Glenn.  We were expecting to see a healthy new baby after this last surgery and instead we have a sick little Logan.  I am pretty sure he picked it up at the cardiologist’s office a couple of weeks ago.  At that appointment (the one a couple of weeks ago) Dr. Patel (whom I have a whole new appreciation for, after coming from Boston – see previous post entitled Dr. Patel saves the day!)  did an echo and said the repair looks excellent.  That is a relief, looks like the valve repair is holding up. 

Now 3 weeks of an upper respiratory infection later we went back to Dr. Patel’s office this past Mon. and he still gave us a good report.  His oxygen levels were a little low (in the low 70s) but this is most likely due to him still getting over his respiratory infection. But other than that Logan is doing good.  I have to admit that we are pretty exhausted.  Logan is waking up every 1-2 hours every night from either being hungry or congested. 

Now that Logan is 6 months old it is time he starts eating real food.  And it is clear that breast milk is not filling him up anymore.  However, this has been a struggle.  He definitely has some oral aversions from all the medications that are shoved at him all day.  He wants nothing put in his mouth and has an immediate negative reaction to anything coming towards it. So right now the process of getting him to eat food is going really slow.  We are mixing cereal into his milk and putting that into a bottle which he it tolerating, but that isn’t getting him over his oral aversions.  I had a little luck with a tiny amount of sweet potato on a spoon and let him just suck on that. 

Speaking of which his medication schedule is hell.  It is so much, I do not blame him at all for not wanting anything near his mouth.  He takes 6 medications.  Two of which have to be given every 8 hours, 2 of them twice a day, and 2 of them once day.  We try to stagger them because giving them all at once is too much on his small tummy.  So he gets a yummy medicine bottle at 12 PM, 8 AM, antibiotic (for asplenia) at lunch, more meds at 4 pm, more antibiotic before bed, and another round starts again at 12pm.  Poor Baby.   

The goal right now is to try to keep him healthy thru this winter and upcoming holidays.  It is no small feat right now as everyone has been sick with either the stomach flu or some other illness.  It is very cold here and we have been battling blizzards for weeks, so  I am trying to make the case that for the sake of Logan’s health I need to go live in Hawaii with my Aunt for the rest of the winter 🙂

As you can see, I am not exaggerating the extent of this cold bitter winter we are having here in Ohio. 

4 thoughts on “AV Valve Repair update.”

  1. I promise it does eventually get better. C came home from her 2nd OHS on so many meds that she got sometype of med 15 times in a 24 hour period. We are now down to just 5 times. Thanks goodness. Once C stablized and things were going good some of the meds were able to be dropped and others had the time interval increased, like from every 6 hours to every 8 hours. C has also been fighting some type of upper respiratory stuff and she goes through periods where she wakes up 3, 4 even more times a night. Two days ago she was awake at 4:30am and did not go back to sleep. Yippee. So glad to hear that Logan’s repairs are great and that his echos keep looking so good. Hope he kicks the illness soon and you can all get some rest.

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