May 27, 2009

Neela's Ongoing Troubles with her LM...

Well here I am again... in the hospital with Neela. She was doing very good for a few days since being discharged last Saturday May 22... It hit her like a ton of bricks, Wednesday night at Clint's baseball game... Bart sensed that she didn't look quite right... I felt her head and not to our surprise felt "warm". I went home with her took her temp sure enough it was 101.0. Exactly not what you want when you've had your child on antibiotics for over a week. She was sluggish and not comfortable. Awoke Thursday am, in my gut she was headed back down to Iowa City to see the ENT guys. I called and asked what they wanted to do with her fever spiking up again. Without any hesitation they said, "bring her in". I had Tate and Beau with me that day, so it was grueling waiting it out to see the doctor when we arrived there. They were tired of these doctor visits, just like their baby sister, Neela. Doctor came in to see her in the exam room, I could tell the look on his face... "ADMIT". I knew it. He even put some numbing gel on her neck in two places so they could go in , again, and aspirate fluid from two places in her neck. They needed to culture it ..to see exactly where it is coming from. So after three hours at the hospital, Bart arrived, ALLELUIA ! (help with the wild boys, that wanted to get the heck out of that hospital). They got Neela settled into a room on the Peds Floor, (our home, away from home) sad to say... The nurse right away came and got her to take her to the treatment room to start her IV and to have the ENT docs aspirate her neck. After a grueling hour and a half... they withdrew 60 cc of fluid off her neck and put her IV in ... between that time...could hear her screams of pain... it was heart wrenching and horrible to hear... I felt as if someone was shoving a knife in my chest and pushing it in a little deeper the higher her cries got... She was pretty happy most of the evening, after all of the needles...... I think she felt better having that extra fluid and pressure relieved in her neck. She slept very well that night, awoke to medical students poking and prodding around the room at 5:45 am. I am beginning to realize to go to bed early at this hospital due to doctors making rounds very early. Ughh... I'm not a morning person, ask Bart. The docs had told me that her white blood count on admission on Wednesday was 21,000.. which is high... indicating an infection somewhere... Docs were concerned with these numbers and not really knowing if the infection was related to her LM or if she had an onset of pneumonia... (which was ruled out, had a chest xray to confirm) AMEN!... don't need to add that to her medical history. They were going to call in Infectious Control... meaning pediatric docs that specialize in infections. So met with that doctor, he wasn't concerned with Neela... he was going to check and see if a few of those bacteria from her LM snuck into her blood stream... but not wanting to think about that. We will see 'bout that possibly tomorrow. (Sat.) The pediatrician stated that he thought the infection was just a stubborn LM infection that didn't want to be treated with oral antibiotics. So the plan is for Neela to have the sclerosing therapy (ok-432) injections on Tuesday June 1. Doctors are wanting to keep her here 'til then, to make sure she is healthy... But also heard tonight that the ENT doc (Dr. Soloman) that is treating her and has been treating her through the past three infections in two months... is battling it out with Dr. Smith, her LM doctor.. about even doing the injection as scheduled, since the area has been aggravated so much. Dr Soloman has seen the worst and worst with Neela's pain and discomfort. He is thinking 'if we don't do these injections as planned.. then Neela will continue to fight this ongoing circle of infections 'til she does receive it'. Dr. Smith is in Spain as of right now, but they are going to discuss it tomorrow whether or not to receive the treatment... hope this all makes sense, its even confusing to me at times. As I look out Neela's hopsital room window, I see others move about and cars drive by... its so hard seeing the world keep "going" as our baby girl sits here in pain and faces the unknowns in the future. I need to hold onto that faith that is keeping me from going down the wrong path in life... God, my strength ... my refuge... Neela's healer... Please continue to pray for the doctors, that they make the right decision for Neela in regards to her healing and treatment this weekend... ! I miss my family terribly being together... this is just not our family... We are inseparable. We do everything together ! Bart took all the kids camping this weekend with the Driscolls... like we had anticipated all of us doing to "relax" this upcoming weekend. Oh how I long to be fighting mosquitoes and kids throwing punches and even the tattling. Neela misses smiling at her wild brothers and silly daddy ! Hoping and longing to be home before the upcoming Memorial Holiday. Thanks everyone for their kind words and prayers...:)