Friday, August 31, 2012

Update on life...

Well things seemed relatively the same for Luke health wise for a long time.  I think more has happened to Luke in the past 10 days that in the past 10 months.  But what a tropper.

So after Luke's surgery he had some bad poos and a leaky trach.  He got a half size larger trach, now he has a 4.5, on Friday and things have been going much better and his leak is minimal and his volumes are great.  I had been noticing his heart rate wasn't going below 100 at night and it is usually 80 and 90s when sleeping.  The trach didn't solve that but realizing and fixing the poo issue did.  I wondered before surgery when he had all the bad poos if he had c-diff (a highly contagious, sometimes serous intestinal issue.  It usually appears after taking antibiotics that have wiped your gut flora and these are the bad ones that recolonize). But none of the nurses said anything and I was sure they would if they though the had it.  After surgery he was on Augmentum, big hitter of antibiotics, and his poos were icky just because of the antibiotic killing the gut flora. His poos got better for 24-48 hours and it was probably because we got off Augmentum and had him on probiotics.  However, he took a turn for the worse this weekend and on Monday morning my nurse said she thought he had c-diff.  She said that the color, consistency and smell had changed to a c-diff poo.  Thankfully we were off to see the surgeon and got a sample and a prescription for an antibiotic to get rid of the c-diff which we started right away.  C-diff hurts as your intestines cramp and sound like a construction site.  We stared Luke on Pedialite as well on Monday evening and after two meals of Pedilite, 2 doses of antibiotics and a few increased doses of ibuprofen Luke was doing better.  His heart rate Monday night got down into the 90s and was back to normal by Wednesday night.  The lower heart rate could be that he was in less pain or maybe he was no longer dehydrated.  Whatever the case we were on the mend.

Well almost...on Monday I had noticed his right pin site was red and ozzing and when at the doctors we got a culture.  The doctor said if they didn't get better to call.  Well by Thursday both sites were ozzing and I called the docs.  I got put through to a resident who didn't know Luke's case and couldn't do anything but talk to other people for me and we weren't communicating well.  It was VERY frustrating.  On call three a resident who did know our case and who I recognized was standing next to the first one and I got more accomplished in 5 minutes with the resident I knew that I had in 30 minutes with the other guy.  During the day I had also e-mailed the doctor and head resident about some other things and that evening I got a call back from the head resident, who we had seen in the office and got the whole story on everything.  Yeah!  So now we are on an antibiotic, not Agmentum (which was what much of the fight was about with the first resident, bad poos and dehydration were not worth the Agmentmum I knew there were other options, the resident did not) to treat the infection at his pin sites.   We saw our pediatrician who took another culture today and so he is up to date and I can deal with him about these infections now which is good.

Oh and the c-diff culture came back negative.  Yes negative.  The head resident who had smelled the c-diff poo said there are sometimes false negatives.  So we are continuing to take Flagel for the c-diff, but not really c-diff, and it is working.  Two of my nurses (the third was not here during the c-diff time) also thought it was c-diff.

Oh and to add to all the frustrating doctors, I have been a little stressed with all of this lately and have a huge sore on my tongue making it painful to talk (it is much better today, thanks nurse Robin for the tip on a remedy).

And then there are the really sad things that have happened.  A little girl with Moebius passed away this week.  She was about Luke's age, we met her mother at the 2010 Moebius Conference, she had a trach and used to have a vent.  I am not sure what happened but she is gone.  It is really sad and my heart breaks for her family.  I also am feeling all the more protective of Luke.

I have read a few other special needs moms blogs and noticed their frank talking about the stress, anxiety, worry and emotional tiredness.  I don't know if I mention it here but it is hard, I am tired ALL the time.  If not physically tired, emotionally tired.  Sometimes I don't always see it until something happens and I just break or melt at some little thing.  It is hard to have a child that has an airway that he pulls out or gets pulled out and know that he has a under a minute when it is half out and maybe a few minutes if his trach is all the way out until he is blue and unresponsive.  Sometimes I want to tell people, no I am not a crazy, overprotective mom (although I may be if you took away Luke's medical issues) who does weird things just because.  Other Moebius babies have died who have trachs and vents.  And not awhile ago and the technology is new but in the past few years, in the past few days.  Things with Luke are not guaranteed (and I know something could happen to any child at any time but the odds of something happening medically to someone like Luke are much higher) and as much put the thoughts aside most of the time, Luke's life is precariously tied to a little plastic tube that comes out more frequently that I would like and it is not a matter of if the trach will come out unexpectedly again but when.  I am having trouble again with him going to school and putting him in someone else's care.  If his trach comes out there is not time to call for me to come, no time wait for 911.  He needs help in under a minute if it comes out.  And above Luke's stress Hannah has been SUPER clingy and whiny needing to be with me, held by me, all the time.  Today she had her moments but overall was better.

Hannah in general is a great player and has some great motor skills.  She is very cute and says a very clear "hi" and "bye" and babbles other things and says "daddy" and "ba ba" when I ask her to say "mama" although I heard her say "ma ma" before.  She loves to carry and pull things around and spends most of her time walking around with something in her hand moving from one area to another being Miss Destruction.

Luke is doing very well being cooped up in his high chair most of the day.  He mainly reads and plays with blocks, which are his normal daily activities even not in the chair.  Since the watching horse jumping on the Olympics he has gotten his fences out and jumped horses over them.  He also enjoyed the diving competition as it reminds him of his favorite book "Where's Walrus" where a walrus escapes the boring zoo and learns that he is a great diver and gets his own diving pool at the zoo.  Luke liked watching the swimming and bicycling too.

Well there is where we are right now.  We do have recent pics and when they migrate to my computer I will post some.

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