Tuesday, December 14, 2010

Moving Forwards

Cayden did not end up getting his scheduled bronch and endoscopy early December.  Around the evening of the 20th of November, Cayden came down quickly with all the symptoms of a cold...and it hit him hard!  By Monday, Cayden couldn't sleep at night because of fits of coughing and he had lost his appetite.  He also lost his energy and was super lethargic.  I was debating on whether to call the clinic or not thinking that maybe we should give him a chance to beat it on his own.  I ended up calling them, and got a call back saying that he should be asessed by a respirologist.  Because of his bronchoscopy coming up in a week, they really didn't want Cayden being on antibiotics, because then it would have to be cancelled.  I left work quickly and got Cayden to the clinic.  I didn't even grab him food...I thought we would just be seen and then sent home.

Cayden was seen by the Respirologist and they were quite concerned by his croupy cough.  Croup is pretty common with infants, but combined with Cayden's tracheomalacia and stenosis (narrowed and weak trachea), it actually is very dangerous for him.  Because of this, they wanted to admit him to give him some steroids to try and open everything up a bit.  First they wanted to try and suction his lungs to get some of the mucous out so hopefully he could breathe a little better.  They would also be able to culture it and try and see what bug was in his lungs. That was the hardest thing I have ever had to see.   Cayden was completely traumatized after that.  He was shaking all over and started crying and getting panicked everytime the door would open.  He just had this look of defeat in his eyes after.  It was so heartbreaking.

We got settled into our room and were just awaiting orders for the nurses.  Cayden wouldn't let anyone get near him to listen to his chest or to do vitals.  It was a fight to get any of that done.  We met with physio and they tried to do some CPT but of course he screamed when they got close.  It probably didn't help that we were on isolation so everyone coming in had yellow gowns and masks on.  The Physiotherapist said it wasn't good for him to cry so hard, because it was probably making things more inflammed so I ended up doing the physio that night and we would try again next time.   In the hospital, CF'ers get physiotherapy every 4 hours, so I was hoping he would relax a little for the next one.

Because I wasn't prepared for a stay, we had nothing! I had to run out and buy some pj's for us and bottles and milk for Cayden to drink.  I also had to buy some toys because he was not allowed out of his room due to the isolation.  It was a little crazy!  I think I will always bring an overnight bag just in case now.

The steroids seemed to really help and Cayden got some energy to play a little.  The next morning we tried doing nebs and the nurse insisted on doing it and that just set Cayden off.  He rarely cries anymore during nebs at home but this time, I don't think he really inhaled any medicine.  After that, physio tried to pat him again but of course, he wouldn't let them.  The physiotherapist did start with a neat move I had never seen before though, he put both hands on Cayden's chest and kind of tensed up his arms and vibrated him.  Cayden coughed so much during that.  It was really cool and I would actually love to learn to do that.

By the time the Doctor saw us, I had gotten new that we would probably be sent home due to overcrowding.  THey sent us home with some more steroids to keep on hand and that was about it.  I left feeling like it was kind of a useless stay.  All that stress! 

Because Cayden was so sick, and his bronchial tubes were so inflammed, it was decided to post-pone the bronchoscopy.  If we went ahead with it, we would risk irritating his lungs even more.  We are at clinic next week, and will set the date for early January. The clinic called last friday to follow up on his cough, and he was still the same so they prescribed him some antibiotics.  That night he slept really well and started getting better so I am pretty sure it wasn't the antibiotics that helped.  Oh, and Cayden's culture from the suction only came back with Rhinovirus, which is a pretty common cold.  I hope all of his colds will not be like this...It will have been 3 weeks of sleepless nights and yuckyness. Cayden just lost his cough this past weekend and seems back to normal now!  Thank goodness....we were beginning to get cabin fever around here. 

So that's where we are at this point.  Now that we are private, I am hoping to be able to post more and with more details too. 

Hopefully this all made sense!   

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