Day +27

Well team we find ourselves back in the PICU room #5!  The place we have called home for the past 21 days!  Our time on 3J was short lived this go around!  Fortunately, our move here was not emergent but merely precautionary!  After a very good morning of seeing Addie awake, having our favorite nurse and having fun in the bath, things started heading a bit south!  Around 11:30 this morning, Addie's oxygen saturation levels started decreasing and her respiratory rate began increasing!  She started requiring oxygen to keep her SATs above 90 and it was pretty obvious that she was working harder to breath.  I immediately became concerned because the symptoms were similiar to what sent us to the PICU the first time!  The oncology team also showed immediate concern and got the right people involved  stat!  Our doctors ordered an eccocardiogram, a chest x-ray and blood tests to check for multiple infectious processes. In addition to the sudden respiratory distress, Addie also started running a fever last night.  She almost made it 48 hours fever free!  It remains unclear as to why she continues to run fevers and it is a major concern for the oncology team!  They have thrown around the idea of needing to do a CT scan to see if they can determine a source of infection...  They refer to it as a fishing expedition.  Doesn't that sound reassuring?! Not!!! I don't love to fish!!

The chest x-ray today showed that Addie once again had fluid in/around her lungs.  This explained the sudden difficulty in breathing.  It is questionable at this point if she is retaining fluid or if there is a possible lung infection of some kind causing the fluid?!  The doctors so badly want a reason for all of this so they can do something about it, or at least have an explanation!!  I just continue to pray that no infections are present and that this too will go away as quickly as it came!!  

Great news came with Addie's eccocardiogram, it looked good!! Praise Jesus!!!  Mommy's tummy was in knots awaiting the cardiology fellow to share the results!  As of right now, Addie's heart is functioning as it should... Hallelujah!!  Another positive that deserves praise is Addie's kidneys are functioning well and she is responding nicely to diuretics!  I would say at this point we are in a better place than where we were the first time we found ourselves in the PICU!!  

Thank you Jesus for the PICU... We got up here and a sudden calm came over me!!  I am comforted knowing that Addie is being watched closely by so many!!! 

The plan right now is to give Addie diuretics through the night and pull off as much fluid as possible.  A new X-ray will be taken tomorrow morning.  If the x-ray remains suspicious the doctors will likely do a bronchoscopy to check Addie's lungs for a viral or bacterial infection.  

Reed and I are definitely on red alert and I definitely feel like we are overdue for some good news... News that will answer our questions and give us peace for Addie's future!!  I know Addie will be victorious in the end... I feel that, He has reassured me of this but the road to get there is still pretty cloudy, that is the area in which I pray for clarity!!  I just continue to pray that He would ease our anxieties and in those stressful moments that He would give us a gentle reminder to look up and breathe. 

Addie's body remains extremely reactive to the slightest changes or fluid shifts.  She can swing in a positive or negative direction at any given moment!  Addie needed another platelet and blood transfusion today, her hemoglobin (red blood cells) had a large drop from yesterday... I am beyond ready for her bone marrow to recover!  I continue to pray for total healing for my sweet girl... Prayers for her to feel better and for her body to be able to once again self regulate!!  She is one miraculous little babe and Jesus has shown that He is fighting this battle right along side of her... He isn't going to let anything get in her way of beating this!!  She is definitely keeping us on our toes and me on my knees in prayer!!  That girl is always giving us a run for our money... She couldn't do anything half way!  I am beyond ready for this to be done and for Addie to feel better... I so badly wish I could just make her feel good again, but amazingly I don't hear her complaining... Not ever!  That is our girl :).

Prayers Team Addie, we need them!! Lets get our girl home!