Holding Pattern

Well, Mr. X is still not eating as well as he should be. He goes in for his bimonthly height/weight check on Friday morning and I am dreading it.  He looks like he has lost weight and if he has lost a significant amount I'll have to call GI and possibly increase X back up to 3 tube feedings a day.  sigh  He will very disappointed and frustrated if he has to go back up to three feedings.

He has also thrown up his late evening feedings two nights in a row (one was at the rock climbing center and it ended up in the rubber mulch.  Craig was with him. Not sure how that one got cleaned up). Today I gave him his second feeding after lunch because he refused to eat saying he wasn't hungry (but he tolerated his feeding fine).  I feel like we are going backwards and it is all because of that stupid cold.  I wish we could figure out what happens with his gut whenever he gets sick.  It's frustrating for him and us.

X is still a little congested, so maybe he is still fighting this cold.  Who knows? He also has seasonal allergies, so they could be messing everything up as well.  Or maybe it is something completely unrelated that no one would ever think about of.  He has also had more meltdowns than usual, which is related to not getting enough calories, which makes for loud and exhausting days.  I know he also worries when he throws up, so I am sure the PTSD is involved as well.

That's about all that is going on around here.  Halloween is in a couple days so X is looking forward to that. He is going to be a rotisserie chicken and we finished his costume last night.  You have to use your imagination to see that it is a cooked chicken, but X is happy with it, so that is all that matters.

Even though we are still dealing with the effects of the cold, things are going pretty well.  The vomiting has me concerned because that isn't typical for X so far out from a cold.  It's hard not to panic and remember when he was hospitalized for 3 weeks for uncontrollable vomiting. That started with a virus as well.  Praying and hoping this situation doesn't turn into that and that he starts eating well again.   And that he doesn't need to go back to three feedings. The three feedings wouldn't be the end of the world, but it would suck.

Dumb Germs

The cold and flu season has begun.  Ugh.  X got a head cold yesterday which resulted in him throwing up from 7:00 pm last night until 6:00 am this morning.  All from a stupid head cold.  It's heartbreaking to see him so miserable from something that should be a minor thing.  I believe part of the problem is his motility slows way down when he is sick.  In order to prove that, we would need him to eat oatmeal while he is sick and X-ray his gut for two hours to see how fast it moves through his system.  That isn't going to happen because he can't keep anything down and I don't know what anyone would do about it. There are some drugs, but when he tried one he had neurological side effects and it didn't do much for him anyway.  I also believe part of the gagging and throwing up is from the NG tube he first had.  That tube down his nose and throat caused so many problems for him and was so freakin' uncomfortable that whenever he has a sore throat or gunk in his throat he gets very worked up.  I will regret getting the NG tube for the rest of my life.

At X's last height and weight appointment on Tuesday he was down a pound (but grew 1/4 inch).  I am guessing he lost a pound because he was fighting this cold. Yesterday he only ate a couple Popsicles and today he hasn't eaten anything.  I'm sure he has lost at least one more pound.   I haven't heard back from the GI doctor regarding dropping down to one tube feeding, but I know the answer will be "no" because of this cold.  I wouldn't be comfortable dropping down to one feeding at this point anyway.  We may have to wait until summer to get through the cold and flu stuff.  Which is okay.  His health is more important than the number of feedings he gets.

So, that's where X is at today.  Even though he had such a miserable night and didn't get any sleep he was still entertaining us a bit this afternoon (until he threw up again).  Today I am thankful for a comfy big couch (it comes in very handy on long nights), Craig had this weekend off so I've had help,  and I am thankful I can use the tube to hydrate X with pedialyte---that makes a huge difference for him.

Not Puberty

Bloodwork results are in and X is not in puberty.  What a relief!  X is definitely not in puberty and does not have Congenital Adrenal Hyperplasia.  We still do not know why his bone age is advanced 2.5+ years and what that will mean for him growth wise .  We will go back for a follow up and another bone age x-ray in 6 months.  When I spoke with the nurse she mentioned that many children will catch up with their bone age, so I am hoping and praying this is true for X.

I am relieved to hear this news, and at the same time am scared that they are missing something.  I always hope that a reason will be found for X's issues and there will be a quick and easy fix for them. All we seem to get are more questions and unknowns.  No one can tell us why his bone age is so advanced (and why his wrist shows delayed bone age while the growth plates in his fingers shows advanced bone age).  I am very happy he is not in puberty.  Very happy.  I am also frustrated that we have more questions.  This is such a crazy journey with X.  I suppose I shouldn't expect anything less considering X's personality.

X had his feeding button changed today.  That procedure is becoming less traumatic each time. (It takes about 3 minutes).  We could change it here at home ourselves, but that's not happening because, a) X would definitely not be able to handle that with his PTSD and b) I would probably pass out ( I can't even watch them change it out.  I tried today, but thought I was going to faint, so that was a no-go.  I totally suck when it comes to things like that).  When I told him yesterday about the upcoming change he was a little scared, but didn't scream and was still able to enjoy the day/night without obsessing over it.  This morning he was nervous, but was able to work through it.  These are very big steps for him and I am so proud of him.  He really is a brave little guy.

Tomorrow I am going to ask if we can try to go down to 1 tube feeding a day.  ONE.  I hope we get the okay for that.  Right now X gets one feeding in the am for 35 minutes and one feeding at night for 35 minutes.  This means he is usually up until 9:00pm so he can have time to digest any food he's eaten in the evening before getting his feeding.  His hunger doesn't usually kick in until around 3:00 pm and especially in the evening.  I believe that is because of all the continual feeds he had as well as the night feeds he had.  We still need to reset his hunger clock.  Hopefully by getting rid of the last feeding at night that will help.

All is going well over here.  We are heading into the cold/flu season and that can always be dicey for X, but I am hoping that he will do better this winter as his gut seems to be doing so much better.
Right now the biggest challenge with X is his halloween costume.  He wants to be a rotisserie chicken.

It's nice to update with good news.  I can't wait for the update that X is tube free and it is looking like we are getting closer to that update.