Thursday, March 3, 2011

Jude's doctor update

Jude's pulmonologist visit went alright. Mike said the doctor informed him that Jude's lungs sound clear so they did not need to do a chest X ray. I am not sure this was the wisest decision since Jude has a history of doctors making this decision only to bite them in the butt a few days later. Anyway, he did say that Jude's chest wall is weak, and he prescribed breathing treatments twice a day. Right now there are no stop dates on this new prescription. So basically the stroke affected the brain which affected Jude's muscles which in turn caused this issue. So it just means Jude is more susceptible to getting lung infections or aspirating.

He also said the doctor basically told him that we will most likely continue to have issues with Jude throwing up, and waking up during the night. He said trying to treat those issues could cause more problems in the long run rather than just dealing with it. He then said all things considered the situation is what it is, and it could be a whole lot worse. He also mentioned that all things considered Jude looks very good. I know this should make me feel better, but it really annoys me when doctors say "it is what it is". Yea thanks I KNOW THAT, but it doesn't make the situation any easier.

Mike said he thinks I have moms intuition that runs about 24 hours ahead of any illness Jude has. So he thinks I get very annoyed when people and doctors don't listen to me because I really know when there truly is an issue. In this circumstance I was right again that this isn't just allergies because Jude is now running a temp. He is either fighting something or aspirated and it hasn't fully reared it's head yet. I am hoping it's just a bit of a cold that will quickly go away.  Again, I think having Charlotte there with Jude is making all the difference. Yesterday she did CPT, kept his nose clear, and administered medications around the clock. I am hoping that her help will clear whatever Jude has up quickly. Now I am wondering ......... since Jude already has trouble sleeping, what in the world are two daily doses of Abuterol going to do to him? Oh, and the doctor did say that having Jude sleep on his sides is better for him, and we will continue to need to reposition him at night. I am hoping that at some point we can get a night nurse a couple of days a week.

Look I know that our situation could be worse, and I am thankful it's not. With that being said I was really hoping we would find a solution to Jude not sleeping at night. It's been years of this, and I am tired.  Although, in the back of my head I knew we would have to keep repositioning Jude for various reasons. No one can lay in the same position for hours without risking blood clots, etc. I guess I just never really realized this is it, this is the way it's going to be. If I stayed home I think the lack of sleep would be easier to handle, but working full time wears me out. It's to the point that an extra 15 minutes of sleep when Charlotte gets there makes my day.

Anyway, off my boo hoo fest, I will get over it and march on as usual. Throughout his current coughs and aches Jude is still smiling. He is my little Juders, and I love him very much.

Here is Jude last night laying on his wedge. You can tell he is a bit sick.

and here is Em showing off her new feather in her hair she got courtesy of KTS Hair Studio!


jocalyn said...

poor baby.

kendall sleeps right next to me every night...on her i can reposition her and make sure she's breathing. i too have had 3 years of no sleep! (but would much rather go to work everyday than care for a sick baby after a night of no sleep!!) thank goodness for nursing and mdcp...lets just pray our lovely legislature doesn't take that away in the next few weeks. its not looking good.

scot7 said...

when a person is tired everything seems twice as hard,getting night help will make it some what easier for jude grows turning him will be harder aslo dealing with his breathing and other things,its very important for you both as his care givers to have a good surpport group around you,you are on the right track getting nursing help.i know you love him so much but its really hard!you both are wonderful parents!

Anonymous said...

I am the stay at home parent, so I am the one who has had more limited sleep for the past couple of years - it does wear on a person, but I do make sure that my husband sleeps as he has to function for work, so I do the night duty and then sleep when our little one does or not! It is hard, but I too say "it is what it is" and we just muddle through. Our little one does not have a g tube, so we do not qualify for any nursing - otherwise our little one is total care, but we have figured out how to make our life work. It is a slow process, so hang in there!