just a little tired

I'm tired.
I'm tired of commuting to the hospital.
I'm tired of never really knowing what the plan is.
I'm tired of getting into some sort of routine for Lucy only to have it disrupted by a hospital stay.
I'm tired of having to remember if this hour or that hour she gets meds.
I'm tired of having to carry a notebook every time we leave the house with all her medical info.
I'm tired of the strain on my relationships.
I'm tired of crying
But mostly I'm tired for Lucy.  For all that she has had to endure in these nine months. For all that is still to come.

These last two weeks have been trying and yet Lucy has managed to smile through most of it.  I'm amazed everyday at her spirit.  Happy 9 months little girl.

 

 

The catherization on Monday went well considering what they found.  The original plan was to balloon her pulmonary arteries, however, once they were able to view them, the doctor saw that there was no narrowing.  They were just small.  They instead ballooned the coarctation of aorta which was successful.  What we did not expect was the effusion around her lungs which turned out to be chyle and the dreaded chylothroax was back.  What was puzzling is Lucy showed no signs of distress especially after seeing how much drained in the first day (about 300 ML).  The doctor drained the chyle during the procedure and then inserted a pig-tail drain tube on the left side of her chest. He also told us that her left subclavian vein was blocked.  After the cath we met her back in her room in the PICU and it was insanity until we left.  Lucy was a complete mess.  We could not get her to calm down, even with morphine and Tylenol.  An x-ray was ordered and the doctor saw that the chest tube was coiled and sitting on her diaphragm.  Every time she took a breath she could feel it.  They ordered some IV sedation medication and planned to pull the chest tube out about 10 mm.  There are many things I thought I would be doing with Lucy but I can tell you helping a doctor and two nurses pull a chest tube out of her side was one that never even crossed my mind.  We were able to get her to calm down for periods of about 15 minutes on my chest, but that was not sustainable.  Our night nurse came in and took over.  She sent us home at 8:30 pm saying we were no good to Lucy without some sleep.  We found out the next morning she was given toradol around 10 pm and she was able to sleep through the night. 

Tuesday and Wednesday the tube drained more and Dr. Husayni said they would discuss her case in conference Wednesday night.  Then Thursday we found out they decided surgery.  The reason behind the decision was that the thoracic duct drains into the systemic circulation at the subclavian vein, which is blocked.  They felt ligating the thoracic duct could potentially fix the issue of reoccurring chylothorax.  Then the draining stopped and thus started the debate of if surgery was really necessary.
Through the weekend Lucy was a smiley, happy baby.  Our room was right in front of the hallway so she had plenty of people to watch.  Many people would stop and wave (the curse and blessing of glass doors) and Lucy would just smile.  And we just waited for a final decision.
That decision came Monday around 10 am and they expected to take her about noon.  Talk about short notice.  The first case took longer than expected and we ended up sending Lucy off with kisses around 2:30 pm.  Surgery was successful and we were back in her room by 6 pm.  This time we decided not to hold back on pain medication and had morphine and toradol scheduled.  She came out with a second chest tube, on the right side.  We moved down to floor two on Tuesday and were hoping for a discharge soon!  During rounds they said they would watch output overnight and pull both tubes Wednesday morning.  Unfortunately, there was still drainage overnight.  On the morning x-ray it showed the left tube had pretty much fallen out on it's own.  They had to pull it out and would monitor to see if any liquid accumulated.  We wait to see what Lucy's fate will be pending an x-ray.

Some much needed sleep amiss the craziness that is the ICU floor.