Friday, March 18, 2011

A 'Set Back' Kind of Day

Today begins Day Three of our hospital stay. Yesterday, it seems like moments after I posted the last blog things turned worse. She just kept having set back after set back. It was a long Thursday for us. But my hope is renewed, it's a new day and hopefully a very mild and happy Friday is ahead of us!

She woke for her day on Thursday around 9:30am which started a coughing fit - that Dr. Mike witnessed. It wasn't pretty, but hopefully it would just be a spasm that calmed down after a moment or two. Not so much unfortunately. The day spiraled into increasing oxygen twice, going from nothing at 2am - all the way back up to 0.5 which is where they had her when she desaturated in the Children's ER. Siigh.

Her breathing got more and more labored and she was working hard to breath most of the day. Around midday they did another abuterol treatment, which for bronciolitis patients only works for about 10% of them - whether it was as effective as they see it in other patients, I don't know - but I felt like it did break up a little bit of the congestion.

They pricked her heel to check the blood gas levels which were ok, not great, but not alarming. It gave them a good baseline to be aware of. She had another chest xray since her condition certainly had worsened since the day prior. Thankfully there was no additional sign of pockets of distress or a secondary pneumonia developing. She had an IV ordered since her diapers weren't as wet as they would have liked. She was also ordered some respiratory treatments, where they take this vibrator and place it on her chest and sides and rub it around to help break up the mucus plugs. She actually enjoys it... and if she's asleep... sleeps through it! Thank goodness since she had the treatment at 8pm, 12am, 4am, etc..

She continued to do ok with sleeping - mostly on me or next to me - although the below picture just cracks me up and I think is so sweet. I had her propped up next to me in almost a seated position to help with her breathing and the secretions - and she kept scootching over until she could find me and then she finally relaxed and slept.

In the evening I was put on a 'No Breastfeeding Order'. I convinced the doctor's to let me try again while they were in the room - and I put her on the heavier flow side (bad choice for a convincing performance.) They remained steadfast on the 'NBO' Hmmph. The nurse and I after some negotiation (legal skills come in handy all sorts of places!) were in agreement that she could continue to feed on the one side and that I would pump the heavier flowing side to avoid any negative effects of not feeding her from that side. And so in the middle of the night after it was revised to 'No Breastfeeding when respiration is over 55+' Ok DEAL! The reason they had put her on the NBO is that her breathing was so labored and quick they were worried about her aspirating or perhaps in a rare event needing to intubate her and not wanting to have liquid in her stomach that would then of course come up when they did that. However, her breathing although quickened and labored wasn't ALWAYS above 50+ and in fact if you denied her breastfeeding to me that was worse because that's when she got MAD and her heart rate and breathing would spike - it seemed counter productive and so I'm glad they revised it.

Loving Husband was finally able to come after Ace was asleep in bed (while the grandparents stayed at our place 'watching' him sleep.) It was nice to finally have him around and see him for a while. It had been a long day. Mae by the time he had arrived was looking SO much better. Her breathing had calmed and relaxed a lot more and she was starting to get some energy back.

Getting some love from her dad

She went to sleep finally around 12am and we all prayed for a good night. She hadn't had any deep suctioning since the respiratory therapist was in around 6pm which was great! She did require the standard nose sucking each time she woke though, but that wasn't too bad. She slept from 12-4am and needed some food. Getting her settled enough to go to back to her bed took an hour, so we returned to sleep at 5am and she was awake again at 7:30am at which time I brought her into our bed. She slept again until 9:15 when the respiratory therapist was back for another treatment. This particular treatment moved enough junk around that she required some suction and had a coughing fit... but she was back asleep without much fuss after that initial irritation of all of that.

She was literally watching tv, calming and winding down for sleep

She continues to sleep - and I'm all for it. I want her to get her energy and rest. Throughout this all so far she continues to fight the suction and the poking and prodding which is great, that means her spirit and her energy is still strong. I swear she will HATE the color yellow when she is older though. That is what all these doctors and nurses are wearing when they enter the room. She actually has a worried look when her nurse came in yesterday - because it usually meant suction - it was so heartbreaking.
Today I am hopeful that we will continue to trend upward and forward. She isn't going to leave today, but I want to believe she is healing. We continue to pray and leave it in the Lord's hands and appreciate all the prayers she has surrounding her. Thank you! I am doing ok and am getting decent sleep in the night. In fact (apparently) Dr. Mike came in after 7:30 this morning when Mae was sleeping next to me in the bed and we were both zonked. He still examined her and I never budged. The nurse told me about it around 9am. :) So apparently my sleeping like a rock has it's advantages in the hospital as well.
I leave you with this sweet moment that I had with Mae yesterday...

Even while working hard to breathe she still had time to smile


Heather Porter said...

Sweet baby girl! We're still praying!

Heather said...

I'm glad things are trending upwards! Poor baby girl. :( I remember when M got scared of the nurses at a certain point, too. She'd scream when they entered the room.

Hopefully you guys get to go home soon! Sleeping in hospitals is the worst, although it sounds like you're doing ok. Let us know if you need anything!