Thursday, January 19

Day 2; Two Procedures

Today was difficult for all of us. Madeline has been very scared of pulmonologists, nurses, anesthesiologists, respiratory techs....and you name it. The fact is that once you are inpatient there are medical professionals walking into your room continually poking, prodding, taking body temperature, blood pressure reading. These visits can happen almost every 4 hours. Today Madeline reached her breaking point when people dressed in masks, purple gloves, and yellow gowns swarmed her bedside. It was simply more than she could handle and frankly more than I could handle watching her freak out, propell her arms towards us, and break down crying or screaming. I don\\\'t blame her feeling scared or having these reactions but, it has been hard to hold our own. It is emotionally draining watching your child scream till she can\\\'t anyore after every person wants to examine her or stick her. The staff here has been great at working through these concerns but it does take a ton of patience from all involved....Madeline is still working to get there. She is starting to slowly trust and I am slowly starting regain my emotions again. Thank goodness that jack and I have had help working through Madeline\\\'s fears with my Parents. They have provided us with those needed "breather breaks" when jack and I feel like we just need to step away from her bedside. We are very grateful that they have been here to support Madeline thru it all too.

Through all the ups and downs today Madeline got her PICC line put in and had her bronchopsy. (mentioned these in my earlier post). Madeline wasn't able to eat from midnight last until 5 this evening due to these procedures. Both involved us taking Madeline down to the OR.She has to be put to sleep and we followed up with her 2hours late in the recovery room when we began coming out of anesthesia. There jack and I met with all the doctors and discussed her results while they removed her breathing tube and oxygen. It was hard to see her like this but, we were delighted it was over.

The picc line will serve as her Iv for 2 weeks to give her those needs Iv antibiotics to hopefully rid her of pseudo. we will have the results from the bronch on Monday but were able to speak with the doctor about what she saw during the bronch. There seemed to be very little mucus in her airways but some inflammation in her lungs. This seems to be fairly good news that her lunsg were clear looking but had some inflammation (which is common in many cfers). The doctor took a sampling of mucous from her lungs to send off for testing. We should find out on Monday if that sampling does have pseudo in it or not. If the testing comes back that the psuedo is not in the sample taken in her lungs we will most likely conclude that Psuedo is primarily just in her sinus and throat areas. (If it is in the sinuses we will have a higher chance of getting rid of it completely with ivs as the doctor mentioned.) It will be interesting to her the news on Monday.

As of tonight Madeline still has an Iv in her arm, a PICC (iv) in her other arm and sensors monitoring her vitals. Hopefully tomorrow we will get rid of some of these lines and she will be able to run around in her room. Her energy and spunk has started to come back to life again....and it is great to see her being happy.

It;s been a long few days but in the end we are hopeful that this will be worth it. Thanks again for keeping us in your thoughts.

(More pics on facebook....) And more updates as our stay continues....



  1. Sorry you are all having a tough time. We just had a culture come back in Sept. with PA. We have another appointment in Feb. and are hopeful that it is still gone! Sometimes the weariness of being a mama to a child with this disease is...exhausting!! Praying for your and Madeline today! =)

  2. I can't imagine this from the parents' (and grandparents') points of view. You are all so amazingly strong, especially that spunky little girl! We're thinking of you around the clock and sending lots of love your way.


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