Saturday, January 21

Day 4: Hope

The morning started with Madeline becoming nauseated from all the IV antibiotics that are going into her system. It's really hard when she asks to "go potty" because she knows she needs to throw up. Sure enough after she got her breakfast out of her system her stomach seemed better. Throughout the rest of the day she seemed to bounce back from all the IV meds and her stomach is now fine again. I am thankful for keeping food down and getting those IV antibiotics in her system!

She also had one of her IV's pulled out this afternoon since she has a stable PICC line in her other arm and they now longer need the temporary IV that was placed the night she arrived. She did really well when the nurse had to take the dressing off and pull the IV out.

The doctors came by to talk about updates on her lung culture from the bronch that was done yesterday and to discuss other tests. She was tested for viral infections through a nose swab (not comfortable) and through her airways (during the bronch). Her doctors mentioned that those tests came back great- she has no viral infections in her airways or sinus passages. They seemed very positive about this fact since many cfers usually do have something viral going on in their airways/lungs. The doctors also mentioned that so far nothing has grown from the mucous sampling they pulled out of her lungs during the bronch. This means that so far no Pseudo is showing up from deep in her lungs. They noted that this was just "preliminary results" and the final results would be available on Monday. So, there could be some change in the sample but, we are hopeful that nothing grows. If pseudo does not show up from this sampling, the doctors will conclude that Pseudo is just hanging out in her sinuses and never was in her lungs. They continue to say that we have a better chance of getting rid of pseudo if we can determine it is just in her sinuses. We still are so hopeful.

Madeline is still struggling with being here. She is just so insanely scared of anyone who walks into the room. She has so many things done to her daily that it can be very overwhelming for even Jack and myself. We cannot blame her for being scared....especially since her 2 year old mind can not comprehend why she is even here in the first place. She asked tonight while crying "Go home?" while pleading with us to put her in the car. It's hard to listen to her asking to go potty just so she can avoid procedures and medical staff examining her. It's so hard to see the panic in her eyes and not be able to explain why we have to hold her down and make her go through this. I just keep hoping that as she gets older this may make more sense to her...

We continue to wish that Psuedo away....more updates in the coming days.
Thanks for all your thoughts.

3 comments:

  1. GREAT news about the cultures! I'll be praying it's not there Monday. She is such a strong little girl, and you're one strong Momma <3

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  2. Is there anything we can send you? Anything at all to make you guys more comfortable or something? Cookies? Soft blankets? Wine??

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  3. SOOO awesome that her bronch looked good! In all our bronch/culture experiences, PA or any other bad bacteria usually shows up even on the prelim so that is great news! So even through this really hard time in the hospital, at least you know her lungs looked good and as of now are not showing anything harmful! That is amazing! Aidan has had 1 good bronch and 2 not so good ones so I love to hear that good news! I also understand how hard it is. Now, we are at the point where I don't even talk to doctors in front of Aidan; he gets so terribly upset to hear about all his issues. We go outside or I have him go outside and play or something. It's so hard on our little ones. You are doing a great job and I truly believe what doesn't take us down makes us ever stronger. Hang in there...Megan

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