Tuesday, June 2, 2009

And Now For The Rest Of The Story....

This continues the saga that started post before last. I left off on May 8th when Bailey was sedated in the OR for the firs time and it was discovered that she had Subglottic Stenosis, a narrowing in her airway. We spent May 9th- May 11th dreading what was to come on May 12th, her big surgery to correct the problem.

May 11th - Monday, we drove to Jackson Monday afternoon to meet Mom and Dad, where we were all spending the night by the hospital since we had to be there early again and couldn't feed her. Jackson is just too far a trip to drive that early in the morning with a hungry baby so we didn't want to chance it. We had a good night visiting and eating together, but it was still depressing knowing the next day I would hand my baby over to strangers for care for at least the next 5 days.

May 12th - Tuesday, the big surgery day. Bailey is taken to the OR around 7:00 a.m. and this is what they did: Dr. Carron, the ENT, made an incision in her neck about 2 inches long and took a piece of cartilage from somewhere in there, then he pretty much opened up her airway and stinted it open with this piece of cartilage, sewed her back up, put in a vent tube, sedated her and sent her to the PICU to recover until Friday morning. She looked much better to me than I expected her to look when she came out of the surgery. It took about 2.5 hours and Dr. Carron said everything went as well as expected.

May 13th and May 14th - Wednesday and Thursday, Sid and I stayed by her bedside in the PICU from 8:00 a.m. until about 9:00 p.m. both of these days even though she was sedated and we couldn't hold her. She would wake up from time to time and I wanted to be there every time she opened her eyes. We didn't stay at night because she was sedated and didn't really know we were there so we figured it better to get some rest while we could since we still didn't know what was to come. So on Tuesday, Wednesday and Thursday night's we continued to stay the hotel across the street from Children's. Not much happened on these days except alot of sitting and watching. There are some pictures of her while she was on the vent, sedated further down on the blog.

May 15th - Friday, Dr. Carron took Bailey back to the OR around 7:00 a.m. and the plan was to scope her and look to see how much swelling was still going on in her airway and try to take the vent tube out. He thought he would have to reintubate her (put the tube back in) but wasn't sure. We fully expected her to come out of the OR on this morning with another vent tube, still sedated, but she didn't. She came out extubated (with the tube out) and awake. At first the nurses didn't want us to hold her but Bailey was so upset and I insisted that if they would let me hold her she'd stop crying and settle down. And she did. Sid and I spent this whole day in the PICU holding Miss Bailey as she fussed and tried to fully recover from the sedation she'd been under. We were not moved out of the PICU because Dr. Carron wanted her to be observed 100% of the time since swelling could occur at anytime and would need to be corrected ASAP. You can only sit in a hospital chair so many hours before your eyes start to cross and you start to lose your mind. But I didn't want to leave Bailey over night since she was awake. I could just see her waking up and crying to be held and no one doing it. I don't think that would happen, but it very well could and you just never know. So Ne Ne and Jerry stayed over night with her in the PICU and Sid and I were back there again early Saturday morning to relieve them.

May 16th - Saturday, more of the same, just sitting and holding and rocking her. We stayed in the PICU the majority of the day but around 3:00 p.m. we were moved to the "floor" which is on a floor higher up in the hospital and just a regular hospital room with minimal nursing care. Jerry and Ne Ne stayed with her again and Sid and I got one more good night's rest. I think we were both asleep before the sun went down. It was such a relief to end our 5 day stay in the PICU.

May 17th - Sunday, We were again back at the hospital early to relieve Ne Ne and Jerry so they could get some rest. We just spent the majority of Sunday sitting and holding Bailey. We thought we'd be able to home but in the end Dr. Carron made the final call and he said no. So we stayed one more night, but looking back on it, this was the one and only night Sid and I actually spent at the hospital. Although we did spend from sunrise to way past sundown there.

May 18th - Monday, we were discharged and sent home!! Hooray!! Mom was on her way when we got home and as soon as she walked in the door I handed Bailey over and hit the bed. I knew the next morning and work was going to come early early and was dreading it. But we were home, safe and sound and what I had dreaded was behind us.

May 19th - Tuesday, for various reasons I didn't go to work and without knowing it, this ended up being the day that I decided to stay home with Bailey for the summer. This day was nothing but a blessing in disguise, which I'll touch on more later. Bailey's breathing didn't sound too good today and when we went to bed, I was a bit worried about her. I remember telling Sid that I was going to take her back to the doctor the next day if she didn't sound any better just to be on the safe side. She was sleeping with Mom and we could hear her trying to breath all the way across the house. She seemed to be uneasy and in some pain because she was requiring pain meds about every 4 hours. When it appeared to be wearing off, she'd get restless and start breathing harder. Something didn't seem right about this either.

May 20th - Wednesday, Mom and I decided to take Bailey back to Jackson just to be on the safe side, but in my mind I knew something wasn't right. She was having a hard time breathing and her chest was sinking in when she inhaled. By the the time we got ready and got a bag packed to be gone with Bailey all day and actually got to Dr. Carron's office, it was 11:30 a.m. He took one listen at her and said oh no, that's not right. She shouldn't sound like that. From there we were sent straight to the hospital and admitted and she was prepped for surgery that afternoon. Dr. Carron figured there might be some "granules" in her airway that needed to be removed, but indeed, Bailey was in respiratory distress for the 3rd time in a month. Bailey was taken back to the OR for the fourth time in 2 weeks about 5:00 p.m. and sure enough, she had some tissue in her airway that was causing her to not be able to breath and had some major swelling too. Dr. Carron removed the tissue, which was about 2 cms long by the looks of the picture and we spent another night at Children's. We were not sent back to the PICU, but instead we were in what they call transition. We were in a room, but the room had monitors outside the nurses could see and they came in every hour to take her vitals. Needless to say, we got no sleep and were just exhausted by this unforeseen bump in the road. But this day was even more confirmation that the decisions made on Tuesday to stay home with her instead of send her back to daycare were the right one's.

May 21st - Thursday, we got to come home and we were home by lunch. Bailey was breathing better than she ever had and on this day she became a mama's girl. Mom tried to so hard to keep her pacified while I rested and she wanted no one or nothing but me. Which of course, thrills me.

And that is the story. We go back tomorrow for the follow-up and I figure that Dr. Carron will want to sedate her in the OR and look at her airway one more time before he releases us. But Bailey is doing so good and it is amazing what she has been through in the past month and a half when I stop to think about it. She is the sweetest thing and I would never trade anything I have in the life for her. I would gladly trade places with her having gone through all this if it would save her from the pain and uncomfortableness. But hopefully we are on the backside of all of this and we look forward to much fun this summer!!!

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