Thursday, April 21, 2011

In the PICU…

Lucy’s pain increased tremendously overnight, her heart rates were over 200, and her need for increased oxygen kept growing.  I noticed around midnight that Lucy’s body was very swollen especially her abdominal area.  At this point she was so uncomfortable that she wanted to crawl out of her own skin.  Her pain was uncontrollable.  An stat abdominal x-ray was ordered at around 1:30 am  only to reveal nothing.   I knew this was going to be the case as earlier that day her first abdominal x-ray came back with NO air in her bowel, that in itself is a very unusual finding that had everyone talking about Lucy’s incredibly unique bowels.  At this point our nurse and I were begging for someone to call Dr. R or whoever was on call for the DRS team because our girly was extremely distraught.   At 4:20 am the resident came in and said that she talked with the DRS doc on call and was told that we could go up slightly in her morphine dosing, but her need for more O2 was growing so we needed to watch her respiratory rate.  We gave her more morphine and turned up her oxygen.  One of the biggest struggles last night was keeping Lucy’s nasal cannula on, she was bound and determined to take it off.  Between the moaning, groaning, and crying out in pain and the constant struggle to keep her from taking off her nasal cannula my heart was breaking for her.  Many of the nurses on the floor took turns to help me try and comfort our girl.

At 6:20 this morning the senior resident on for day shift, who knows Lucy really well, came in right away after hearing about Lucy’s struggles.  When she arrived things became very critical.  Respiratory support was called to Lucy’s bedside as well as ultrasound.  She had Dr. R called and told him to come in a.s.a.p.  When Dr. R arrived Lucy was in the process of being put on Voapotherm, an oxygen delivering device, to support her breathing.  Dr. R immediately knew what was happening to Lucy.  He told us that Lucy was having an inflammatory response to the flu virus know as macrophage activation syndrome (MAS).   Her liver and spleen were grossly enlarged taking up most of her abdomen causing tremendous pain.  Apparently on ultrasound her gallbladder and bladder were also grossly enlarged.  Sadly there is nothing we can do to reverse the MAS in Lucy, we can only manage her symptoms and support her medical needs.

In order to support her medical needs Lucy needed to be sedated to control her pain.  She also needed respiratory support as a result of being sedated.  It was decided that she needed to be transferred to the PICU as her medical needs have increased dramatically.

4 comments:

megan said...

Praying for Lucy!

twotrainnuts said...

Continuing to pray - as are many people with whom I shared your story.

shawna said...

I'm a total stranger, but I've been reading your blog for some time. I have 2 year old twins, one with suspected Mito. We have had an impossible time keeping a cannula on him. No amount of tape matters. I have found a Pediatric nasal mask that he will willingly wear. Our home health orders then for us, and I have a few extras. I would be more than happy to send one to you is you think if might help when Lucy is able to be unsedated. Your daughter is constantly on my mind and in my prayers. You can email me at shawnamcelveen@yahoo.com.

Debbie said...

so sorry to hear all of this...you all are being lifted in prayer