Thursday, May 28, 2009

Stuck In My Head...AGAIN!!

Yes, it's true! Even though I am staying at home now I still do not have the time I thought I would have to update this blog. I don't know how people do it every day, complete with pictures and everything. But anyway, there are so many posts in my head that I have been meaning to put on here and while Bailey is content watching Mickey Mouse's Playhouse (the only thing she will watch alone) I decided to go ahead and try to get one in.

Even though it is well past the two week mark of the big surgery and past it's the one week mark of the emergency surgery, I wanted to be sure and recap what has happened in the past month just for journaling's sake. So here goes:

April 25th - We took Bailey to the Riley's walk-in clinic on Saturday morning instead of the ER because we knew they would have a peditrician and I thought it better to see him than some random ER doc. We took her because she was having breathing problems and wheezing and stuff. The ped. immediatly said she had to be admitted to the hospital as she was in repiratory distress. Bailey was admitted into Riley's Hospital in Meridian and started on breathing treatments and the croup tent. He told us we would likely be here for 48 hours, which would mean going home sometime Monday.

April 26th - Same song and dance, different day! We just continued to do breathing treatments every two hours and keep her under the croup tent as much as possible. She really wasn't getting much better in my opinion. The ped. that admitted her came by sometime on this morning to see her and informed us he was going off call and his partner would be on call starting Monday morning and would be around to see her.

April 27th- Same song and dance, different day! Even though I knew that Bailey didn't sound much better, in my mind, we might go home today since it had been 48 hours since she had been admitted. I mean, how long can you give a 4 month old baby breathing treatments and steroid shots every two hours? So we waited for the new doc on call...and we waited...and we waited...and we waited...and we waited...and we waited...and we waited some more. And by 7:00 p.m., over 24 hours since the last doctor had seen Bailey, I marched myself to the nurse's station and told them that this "new" doctor had about 10 minutes to get there or I was taking my baby and going to a different hosptial that knew what they were doing. By this time, I had so wished that Sid and I knew enough to carry her straight to Jackson or Birmingham where she would be in a Children's Hosptial. But we just didn't know. So we waited some more and finally at 9:00 p.m. (yes, 9:00 at night ladies and gentlemen) this docctor comes in to see my 4 months old baby, meaning not only is it well past her bed time, but it has been 36 hours since she had last seen a doctor. Of course (in my Barbara Self way) I proceed to tell this doctor how unhappy I am that it has been 36 hours since she last saw a doctor and that I didn't think seeing an infant at 9:00 at night was best practice. Let me interject here that this doctor is not just the ped. on call, she is THE baby doctor for all the babies being born at this hosptial while she is on call. So it isn't just my baby that she was seeing at 9:00 at night. Anyway, after a long, long talk with this lady, I told her I wanted Bailey to be transferred to Children's. She then tells me that Bailey isn't sick enough for her to transfer to a higher level hospital but she isn't well enough to go home. WHATTTTTTTT???? After a few more words she leaves the room to go "see what she can do." I know what you can do lady, get my baby out of this hospital. Dr. "Twlight" returns only to tell me that the best she can do is keep us tonight and discharge us in the morning and let us go where we wanted to. After some tought and discussion with Sid we decide that we do not want to be discharged because then we'd just be starting over again at a new hospital and I didn't want Bailey to have to go through getting another IV and such, so we agreed to stay and she agreed to come back earlier the next morning to check on us. But before she left, she did change up a few things because she felt Bailey should be "better than she is" at this point.

April 28th - Tuesday morning, the doctor comes in pretty early, around 9:00 a.m. and when she hears Bailey she says that she would expect her to sound much better than she does and she thinks Bailey needs to have an upper airway scope to see where all the "congestion" sound was coming from. I should say here that at this point, Bailey was not in respiratory distress anymore, but she was still making some noises as if her lungs her congested. From listening to her, we knew her lungs were clear so the noises were coming from somewhere else, we just didn't know from where else. So she tells us that she wants to get in touch with the ENT at the hospital to see if he can do it, but does tell us that he probably will say send her to Jackson since she was so small. I don't know why she didn't just send us on to Jackson at this point, but she didn't. Later, we find out that the ENT is in surgery and it will be after 1:00 before she can ask him if he'll do it, but she still expects him to say no. We find out after 1:00 that he has indeed said no and she will be working on getting us an appt in Jackson. NeNe took off work and was at the hospital so that I could go get some work done, but since we didn't know if Bailey was going to have this done right then or not, I decided to stay. And of course, again, we wait...and we wait... and we wait... and we wait. And about 6:00 the nurse comes in and says that the doctor has called and said that she was unable to get an appointment in Jackson with the ENT but we'd be going home in the morning. The only way to describe what happened next is to say that I believe I had an out of body experience. I told the nurse that I don't understand what she means by she couldn't get an appointment. I mean if the doctor can't get us an appointment with the ENT then how the heck does she propose we get one ourselves and why on earth would she be sending us home the next day if we still didn't have answers. I told the nurse that I refused to stay in the hosptial one more second with my baby when she wasn't getting better and she had better get that doctor back on the phone and find out how to transfer us to Jackson or Birmingham immediatly. A few minutes later the nurse returned to tell us she had made a mistake, it wasn't that she couldn't get us an appointment, she just didn't have time or didn't or whatever her excuse was. But the doctor would be at the hospital at 8:00 the next morning getting us an appointment to go to Jackson. NeNe was still at the hospital with us so we decided that she would stay with Bailey and Sid and I came home to get some rest and a good shower because on the next day, something was getting done one way or another and I needed to rest up.

April 29th - Wednesday morning, the doctor comes in and tells us that we are being discharged and have an appointment to see Dr. Carron in Jackson at 3:00 this afternoon. We see Dr. Carron in his office and he does a small upper airway scope in the exam room with me holding Bailey. She was such a trooper, she didn't even cry. And he thinks that she has a birthmark in her throat and this is what was causing her noisey breathing, but just to make sure he wants to put her under anasthesia and look at it more to determine it's location and size to determine how to best treat it. We see pre-op and set up the procedure to be done a week from now, on May 8th.

May 7th - Thursday, Mom came to town and we left late afternoon to go spend the night in Jackson close to Children's Hospital since Bailey had to be there at 6:00 a.m. and couldn't have anything to eat or drink after midnight.

May 8th - Friday, Bailey has her scope done in the OR at Children's and we are told that she does not have a birthmark in her throat. But rather that she has a condition she was born with called Subglottic Stenosis, which basically is a narrowing in her trachea, or airway. The surgery to correct this is expalined to us and it didn't sound to good. We were discharged from the hospital and with instructions on bring her back the next Tuesday, May 12th, for major surgery on her airway.

Shew, I didn't know this was going to bring back so many memories and get so lengthy. This is why I can't get much blogging done, because I am too wordy. Haha! I'll finish up in the next post with "the rest of the story"!

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