Month in Recap

I recently took a little bit of a blogging hiatus, mainly because life has been so emotionally draining lately that I barely have the strength to function, let alone write about it!!  Writing about my journey forces me to relive it and reliving the past month wasn’t something I was emotionally ready to do until now…

The week before Christmas we had a really big scare with Radek.  He was admitted to the hospital for his THIRD admission.  He caught RSV (Respiratory syncytial virus-a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies or those with high risk conditions) and it wreaked havoc in his little body, especially his lungs!  His O2 stats even got as low as 85% requiring him to need oxygen (something he never needed). 

Even though Radek was suffering from a virus, his doctor decided to go ahead and give him iv antibiotics for the simple fact that his lungs were so irritated and inflamed that he didn’t want to risk any unwanted bacteria making a home in them.  When Radek goes on iv antibiotics they insert a PICC line in his arm because it’s a more long term iv and he is able to go home with it so we can continue his meds there instead of him having to stay in the hospital.   When giving him a PICC line they take him to the OR and give him anesthesia.  Even though it’s a quick and easy procedure, it’s very uncomfortable and much easier to do if he is sedated.  Unfortunately, when they intubated him for the anesthesia, his already irritated lungs couldn’t handle it and had an extremely difficult time recovering! 
When I saw him in the recovery room it was heartbreaking..I have never seen him in such distress!!  I would compare it to trying to catch your breath after the hardest workout of your life!    Because of this they hooked him up to a CPap machine (similar to regular oxygen, but it puts air into your lungs with more force.)  He also had to spend the night in the ICU.  THANKFULLY while he was there he had a really easy going doctor that patiently put up with his unstable O2 stats.  His CF doctor told us that we got really lucky with the doctor that was on that night, he said if it was any one else they probably would’ve intubated him.  Meaning they would’ve given him drugs to paralyze him and put a tube down his throat to breathe for him.  NOW THAT is something I would not have been able to handle SO THANK GOD it didn’t happen and luckily by later the next day he was stable enough to go back to the cf floor.

I have to say…Other than the HUGE ICU scare, Radek being in the hospital was probably the most relaxed I have been in a VERY long time.  Even though I couldn’t see Peyton that week because I didn’t want to pass the RSV to her, it was such a comforting feeling being in the SAME city as BOTH of my kids.  There is something so unsettling about always being a hour and half away from one of your children on a daily basis.  It’s a feeling that even after 6 months still absolutely kills me.  It was just really nice to have some good quality one on one time with each other!!    

As far as Peyton goes….It’s still the same oh sooooo frustrating battle of trying to get her to gain weight!!

Thankfully she was able to have her broviac removed on Saturday January 7, which means NO MORE TPN!!!!  She is also FINALLLY up to full feeds!!  Now she needs to prove that she can consistently gain weight on her own!  I actually had my hopes that she would be home this week, but it doesn’t look like that’s going to be the case.  I hope it’s soon though because I am emotionally, physically, and mentally drained.  I honestly don’t know how much more I have left in me.   I want to look forward to her coming home, but at the same time I hate getting  my hopes up and then getting them crushed.  At this point I forget what it feels like to truly be happy and feel complete…this really NEEDS to be over….uuughghghghghghghghggh!!