30 month checkup

(another shot where Corrigan is looking at Buzz Lightyear and not the camera)

Today was another scheduled visit at Johns Hopkins for Little C.  Everything looks good.  He gained half of a pound in weight and grew half of an inch.  Not bad for 30 days!

His ammonia came back 47.  His last visit returned an ammonia of 35 so I was slightly disappointed in the higher number but he was fighting a cold last week so that might account for the little bump.  Still, the 47 is well within acceptable range and his CBC looked good.

We will not know the results of the additional labs that were ordered to try and find the reason behind his ever-fluctuating iron levels (they came back a hair above normal today) and it always is at least a day until we get his full amino acid results as well.

There were two “firsts” during our visit.  Today’s appointment was the first time that we got a successful height measurement using the wall/stand apparatus!  We had been trying to get him to stand with his heels to the wall, nice and tall, for the past few visits but he always freaked out and we had to resort to laying him down on the measurement board to get those numbers.   For some reason he was compliant today and stood very still (though one person was holding his ankles and another his head!) while they got his height.

36 inches if you want to know. Little C is now 3 feet tall! Mark always says, “Who’s my favorite guy under three feet tall?” when he talks to Corrigan. Guess it is time to bump that up to 4 foot now.

The second “first” was pretty awesome.  For a long time now, everyone has been pretty aware that Corrigan has severe anxiety about being restrained but due to the fact that he has to be accessed through the medi-port in his chest there had been little choice but to wrap him up in a tight blanket and pretty much lay on top of him to get a good draw.  Being restrained would then send him into a panic and he would scream like we were killing him and leave him breathless with stress for the rest of the afternoon.

They just could not risk him flailing around and being injured or kicking a nurse in the face.

The past few times that we have had his medi-port flushed at our local hospital though, the nurses have taken a lighter-hand approach to the entire procedure and we have noticed that when they do not wrap him in the blanket he was far more calm and the last few port flushes they accessed him (again at the local hospital, not Hopkins) without restraining him at all, but standing very close in case he moved.

Of course, his head needs to be turned so that he does not cough, sneeze or spit in the accessed area which could lead to an infection in the line and all sorts of trouble for Corrigan so I would gently stand near the top of his head and draw his attention to me by singing or counting and then, when his head was fully turned, I would place my hand gently on the side of his face to keep it still and continue singing.

Today I gathered my nerve to ask if we could try not wrapping him and to my surprise they agreed.  He did a wonderful job while they accessed him through his chest, not a single tear was shed and he did not move at all.  So awesome.  No crying, no shaking, no sweating…great stuff!

He did suffer one indignity when they had to bag his bits to gather a urine sample and when it was time to de-access his port and removed the bag, well, let’s just say that there is very little option for privacy when someone is removing that stuff from your body.  He was very unhappy, that tape was like cement, and now he has a pretty nasty rash from the glue.  On top of it all, we didn’t even get the sample because (duh!) he has to fast from food and drink for three hours prior to his appointment, what exactly did they expect him to pee out?

So they sent me home with all of the stuff and on the next visit I have the pleasure of collecting the sample myself.  Fun times.

We were in and out in 90 minutes. Over 5 hours in the car for 90 minutes.  Oh well, I am thankful we are within driving distance and that we were blessed with a beautiful day for a road trip!

4 thoughts on “30 month checkup

  1. Read this blog and the last one…I’m happy that there are some positive things happening. My lil guy is doing good as far as I know…his test haven’t come back. We went to genetic doctor on the first and we have the opposite experience it takes us about an hour to get there and we were there for 4 hours. 😦

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    • Amy, what tests are you still waiting on? Man, we have had 3-4 hour waits before too. That is a MISERABLE day when that happens. It is always a crap-shoot on how quickly(or not!) things move. Which is hard with little one’s that have schedules and routines and very little patience!

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  2. Sorry, I didn’t write sooner…your comment went to my spam mail and I didn’t notice until today when I was deleting emails. I do it on my phone so I don’t see if I have spam mail unless I’m looking for it. As of today, I have not heard about any of his test they took on Dec.1. I have tried to call before and its a mess…last time the genetic doctor said no news is good news. So I guess everything was good…we go again Feb.17…right before he turns 1. I’ve been reading your blog and it seems you have a great team of doctors and etc….I am not to happy with my doctor…he’s nice but I don’t feel he explains enough…the nutrientist…well there’s two and I don’t care for either one…course it could be partially my fault. Honestly, Im trying to figure out how my little guys future will be…he has partial citrullinemia…we don’t yet know how much protein he can have since I nurse him course that’s to change once I wean him soon…I want him to be as healthy as possible and it seems the nutrientist just want him to gain weight by eating and drinking unhealthy stuff…course compare to what you and corrigan go through I have nothing to complain about. Yall will be in my prayers! Oh, by any chance did you try that chocolate syrup recipe on that website I gave you?

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