The pediatrician had diagnosed him with Renal Tubular Acidosis and referred him to LSU. The only Pediatric Nephrologist in the state of Louisiana was from New Orleans. Dr Frank Boineau came up to LSU every couple months and that's where Blake saw him.
I was only 17 with a sick kiddo. I was a mature teen mom. We didn't have the internet then. I went to the LSU library, researched and had the Nation Kidney Foundation send me information on RTA. I intended to know EVERYTHING about my son's disease. So... I made notes and lists of questions for Dr Boineau before showing up. As I discussed everything with him in an exam room at LSU, he asked me my age more than once. One of the important things about RTA is finding out if it's primary, distal and the type it is.
The only way to find out the type of RTA Blake has was to admit him to Tulane University Hospital, where Dr Boineau was based and run tests. By this time, Blake cried when he saw a doctor or nurse. We had been going often, sometimes daily to have blood drawn to monitor his CO2 level. Sometimes they had to do blood gases. For those it was a heel stick. I wasn't "immune" to Blake hurting when they stuck him. It was gut wrenching every time. But, I held him and they stuck him. You can't explain to a one year old WHY Mommy is holding you down to let someone hurt you.
So. we go to New Orleans... admit to Tulane.
Right off the bat... something happened that. Something unacceptable to me. The residents came to take Blake for a blood gas. Huh? Can't you do that here? I don't mind holding him. Why take him to another room? But I hold him all the time at the hospital in Shreveport for this! OK... if this is how it's done here.. in a treatment room. They brought me my son back and he was trembling. Then I saw it... a bandage on his wrist? WTH??
My Blake was trembling and tears pouring from his bright blue/grey eyes. He wasn't making a sound. He was just traumatized. I was Shirley McClaine in Terms of Endearment ANGRY!!! Dr Boineau walked in as I' m rocking him thirty minutes later. Blake was still trembling and we both had tears streaming down our faces. I immediately held out his hand and asked,"WHY?" He said,"What is that?". I told him and that in Shreveport they do it from a heel stick, etc,.. His face was red. He was MAD. He assured me that's how it's done here at Tulane and if a Mom wants to be present it's her right. He went to the nursing station and I could hear him yelling at the residents. (GET EM'!!!!.., cause the Cedar Grove in me wanted to kick their... ) Those residents came back and apologized... profusely.
Blake had a private room because they get a stool culture back from the week before from a hospital admission for diarrhea induced dehydration. Blake had salmonella. (yum, huh?) So, there we were... in a hospital.. me and my Blake... and he was on isolation precautions. I was tough by day and lonely by night. I'd pull the metal baby crib close to the couch I slept on, so I could be half way in the bed with him until he fell asleep. Then pat his back when he woke disoriented by his surroundings and scared.
I did get breaks. The nurses would insist I take a break. It was part of their protocol for out of town moms with kids there. They knew we needed it. And we did. The nurses there.. rocked. I went outside one day when the nurse watched Blake. It was so surreal. My age, the circumstance, where I was... all hit me. I went back inside to "safety" quickly. I also stood in the doorway a lot. Right outside Blake's room was a waiting room type area... kids played, mom's with kids in the PICU waited and slept.
There was a little girl about 4yrs old who rode her tricycle around the halls. She was beautiful. Her skin was bright gold and her little tummy distended. She had liver disease. She was ride by and ask how my baby was. I'd tell her he was sleeping (this is when I stood at the door) but he was ok. She was adorable. She wanted to see Blake so bad. So one day when he was awake, I held him where she could see him from several feet away. This only increased her inquiries into how my baby was...lol
There was one mother who's baby was in PICU... she was so worried... her baby boy had a hole in his heart and needed surgery. After about 5 days and nights of talking to her from my doorway... one night I'm laying on my couch and I hear her scream. Have you ever heard a mother's pain? The sound of her heart breaking? It's loud and intense and overwhelming. Especially if you're a 17yr old in another city with your own sick baby. I don't think I'd ever cried so hard before that night. I halfway climbed in that baby bed with my son. I needed to feel him.. touch him... love him. He was (and still is) my heartbeat.
Blake was diagnosed with Distal RTA Type 1 before it was over... most outgrow it and he did (around age 4 or 5).
When Blake's pediatrician was leaving the area, I got a copy of his records. I read through Dr Boineau's notes. In each letter to Dr Hill, he'd mention how mature the mother was for a young mom and he had every reason to believe she was complaint and took exceptional care of the patient. It never occurred to me that me or my mommy capabilities were under assessment as well.
About a year and half ago... my Blake was sick again. He was 23 years old at the time, but it was Deja Vu. It was that very same feelings of being helpless and wanting to love him back to health.
God...I adore that kid.