I had unrealistically high hopes for the new pediatrician to take one look at E, her medical history, and just be driven to find what was going on. I wanted her to be psychic. I would search for E's symptoms online for hours a day, watch "Mystery Diagnosis", or "House" daily desperately hoping that even the briefest of mentions would throw an idea my way. I was sold on this being genetic, but what on earth it was beyond that was out of my reach of knowledge and I felt like a teeny tiny fish in a massive sea of information I couldn't organize or understand. I questioned my own sanity. All the time. I would look at her and wonder if I was just losing my marbles and creating an illness in my head for some sick reason. It would hurt to be so tangled up in this mystery that never seemed to have any light shed upon it.
I took her in to the new pediatrician, Dr. V, and she did the normal first visit routine. She had her weight and vitals taken, looked her over, had her nurse run vision and hearing tests on her. She failed the hearing test. She had us out the door without any fanfare or accusations and homework to get debrox and work on cleaning out any and ALL wax in E's ears before she went to be seen by an audiologist a couple of weeks later. As I drove home I spoke to God. "Dear Lord, I can't do this any longer. I no longer care what is wrong. She is a precious gift from thee and if all I can ask is that you help me take care of her, keep her alive, and keep her thriving, I will take it gratefully. Amen." I made peace with having no control or sway and no one knowing what was wrong and I transferred it to her creator. He made her, I was gifted with her as my surprise baby, and had already made it through her entire first year, so what did it really matter? I went about life with a new sense of peace as I tended to my family full of little girls and my baby on the way.
E's audiology results were not good. Her hearing was bad enough that they wanted her seen by an ENT and advised Dr. V of this. To add insult to injury E got sick yet again, but this time it was worse then the usual. Dr. V put E on amoxicillin and after weighing her began to show signs of concern. "Don't worry baby E, we will find out what is going on with you." I sat with tears in my eyes hearing this pediatrician say those words. A medical professional was not making me out to be some munchausen biproxy or lazy overwhelmed mother that neglected her or mother with too much time to over that was just blowing this way out of the water. I had a drop of validation rest on the tip of my tongue and it made me go home and immediately call my mom and rejoice over the wonderfulness that was Dr. V.
E didn't get better at all and she had a follow up appointment after the antibiotics didn't work AT ALL and she had gotten much worse by four days in. Dr. V was super busy that day and her nurse practitioner saw us and was immediately alarmed by E's condition. She asked us about E's health history, but asked different questions than anyone else ever had. She asked us how often E was sick and D and I looked at one another and answered "when isn't she sick is easier to pin down because she has been sick with something at all times since a matter of days old". She told us to try the new antibiotics she was going to give her, but that E was very clearly in need of Dr. V and that her medical issues were out of her scope of expertise. She advised us to make an appointment with Loma Linda and see her gastro specialist about her excessive state of failure to thrive to consider a gastro-tube being placed. She was clearly concerned for E and it was a huge relief to not be alone in that concern.
The day before E's Loma Linda appointment she had gotten so ill on the second antibiotic attempt that I took her back to see Dr. V yet again. Dr. V looked her over and sat down to talk to me. "To be honest she is so sick at this point that were you not headed to a children's hospital tomorrow morning, I would admit her here right now and start i.v. treatment. But with her going the three hours with you tomorrow to a wonderful children's hospital, I am going to personally call her doctor there and tell her how bad things are looking here. Take her to the hospital here to get bloodwork done so I can look at her immune system. Then home and watch her for any signs of things getting worse and if she gets through the night okay go to Loma Linda and they will be waiting for her." I took her to get her blood drawn, then home. Once she was comfortable and sleeping, D told me it would be smart to pack a hospital bag for us both because she might be admitted at Loma Linda. I took his advise and he made some calls to get emergency leave in case.
We drove three hours to Loma Linda and waited for about an hour and a half after our appointment time to actually be seen. When she finally got called back, we got situated in an exam room and waited another thirty minutes for her doctor to come in. Once she did come in, she seated herself and we had a talk:
"I got a call from Dr. V in Ridgecrest about E last night and she thinks she has a condition called DiGeorge Syndrome. She also told me just how sick E is and that she has not been responding too all efforts made with oral antibiotics. Mrs. M, exactly how many weeks along in your pregnancy are you because I really cannot send E home in her condition. I need to admit her."
"I am 36 weeks and scheduled for a c-section in two weeks from tomorrow."
"You have other children at home don't you? Will they be taken care of if E is admitted here?"
"Yes, two others and their father was approved for emergency leave to stay home with them because Dr. V was talking about admitting her yesterday. We are good on the other two and I am not due for weeks."
"Okay, I am going to call over and order E a bed and run the genetic testing for DiGeorge and treat her for her infection and weight issues. I will have my nurse give you all the information and as soon as a bed opens up they will call your cell."
I packed E up, the nurse gave us the admitting paperwork for me to sign, and I went to the local Wal-Mart to get food and little things for E and I that we might need before she was admitted. I was thankful that even if D had been an increasing mess, he had had clarity enough to have me pack the hospital bags for us since we were three hours away from everything we owned and everyone we knew. I got the call from the hospital about the time I parked and I took E to the floor she was assigned and the nurses lead us to her bed and we settled in. At 36 weeks pregnant, I was to sleep on a recliner that converted to what was about half the width of a twin sized bed and E wanted to be close in the strange environment so I held her in my arms in the recliner/bed for the next two weeks she was in the hospital getting treatment and awaiting her genetic testing.
No comments:
Post a Comment