Friday, January 7, 2011

Ryan's week...

Ryan is still fighting his RSV symptoms this week.  Last week he did not have much on his stomach but a slow drip of pedialyte from his feeding pump.  He started his regular volume of feedings Sunday of this week, but it was all over a slow drip with his feeding pump.  He has still been getting his feedings with his feeding pump because with respiratory things your stomach has a lot of mucous sitting on it and causes nausea and vomiting when you dump a big amount of food in it.  So glad that he is able to get an IV when he is sick to keep him hydrated!  So all this week we have been feeding his daytime feedings with his feeding pump over 30 minutes each feeding.  Today I decided to try him on a bolus feeding again because he is sounding so much better and off oxygen.  As soon as I started to feed him I could tell he immediately became uncomfortable and started to look like he was going to throw up.  Sure enough....he did.  I left his feeding tube vented so any air or formula could come out that his stomach could't handle.  I am wondering how long it is going to take him to be able to tolerate his bolus feedings again.  I have kept him out of school this week to make sure he is better and I started him back on his vitamins as well.  He is doing really well and sounds wonderful but I just don't want to have to send him to school with his pump.  That will just be something else to send back and forth for the nurse and teachers there to deal with.  I risk something happening to the pump or me forgetting to send it.  You also have to set the pump to specific settings to feed him properly.  So I will probably end up going to the school Monday morning for his 9am feeding to make sure the nurse is comfortable with it.  I feel like he is going to need pump feedings for a while because his stomach has gotten so used to them.  The fastest I can run his feedings in him with his pump is about 20 minutes.  He has handled that well for almost a week now and there is no need in making him throw up each time risking aspiration.
I am also still getting blood out of his nose when I suction him out.  He still sounds a little stuffy at times but his lungs sound much better.  We have been trying to fit in 3 vest PT sessions every day and a saline or albuterol breathing treatment as needed.  He is doing much better but still isn't 100%.  We were glad to get out of the house Wednesday night and go to Church Services.  It is always nice to see our brothers and sisters in christ and they were so glad to see Ryan feeling better.
Ryan was the sickest he has ever been so far since he was born.  He was very close to having to be on the ventilator.  He was put on a machine called a heliox that had heated humidity.  He was on 6 liters and  it really helped break up all of the congestion that he had.  They also told me that when Ryan gets to where he can't cough well he will have to be put on a machine called an In-Exsufflator or CoughAssist macine.

This is what the machine looked like that Ryan was on.  It is called a respiratory humidifier.

This is the In-Exsufflator or CoughAssist machine

We are so glad he is doing better.  Another strange but good thing is that Ryan hasn't had NOT ONE seizure in over a week.  We are glad he is getting a break but hate it has to be when he is sick. 

Ryan also received his feeder seat tray and base but not the seat.  His care coordinator (I really have a hard time calling her that because she doesn't really get his things in a timely manner...but whatever.) thought the seat was ordered but it wasn't.  (Insert angry Mamma)  She called me yesterday and told me that she ordered it and who knows when it will get here.  I am NOT happy about this at all.  Who would order a seat tray and base with NO SEAT!?!?  But anyway....I am just trying to move on from this and be patient because my anger will not help the situation and will not make the seat get here any faster.  We are having some positional problems with Ryan right now with only a bean bag for him to lay on.  His wheelchair is not accomodating him properly and we have no other way of sitting him up other than putting him on the couch and that is not safe unless you are sitting right there with him incase he slides off or slumps over sideways.  We are going to UVA on the 14th (Joe and I) to get his wheelchair worked on.  They ordered him new components for it and they are also making it bigger for him (it has 3 size settings on it).  That will be a long day!

Well I guess that is all for now.

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