2013/12/01

Jemimah's Botulism

What started as a long night up with a restless baby ended with an even longer week of watching my baby become paralyzed before my eyes. To see your flesh and blood become the victim of a life taking disease is beyond my ability to express in words. I will give a timeline trying to explain all the details from my mind and my heart.

Saturday November 23- Jem was up frequently through the night. I thought she might be teething.

Sunday November 24- I sleep in and skip Sunday school because of the long night before. When it's time to get ready for church, Jem has an unusual 30 minutes of painful crying. She must be teething. I consider skipping church altogether but think better of it and hand Jem to a daughter to be bounced a bit while I take a shower. Jemimah ends up sleeping through the ride to church and the entire sermon. Odd. We go home and eat a nice meal while baby girl sleeps again. She spent much of Sunday sleeping. She didn't nurse much. I'm starting to suspect she's ill not just merely teething.

Monday November 25- This was a difficult day to get out of bed. Jemimah didn't get a good nights sleep, therefore I didn't either. I'm tender to the chest because she just isn't nursing. By the evening she was so irritable and generally lethargic. I Checked her temperature and no fever. Before bed I tell myself that if sweet thing isn't better in the morning that I will call Doc Callahan.

Tuesday November 26- I awake and am worried for Mimah Bean. I check on her and she is definitely lethargic. I get dressed and ring the doc as soon as she's open. Give another temperature check and still no fever. Yet the lethargy has me alarmed. Within 5 minutes of scheduling the appt with the Docs receptionist, the Doc calls me. Directly. I go over the symptoms which include, not nursing, lethargy, and no fever. I'm told to go straight to the ER. At this point I could feel the shakes creeping through my bones. I had a fear that the day wouldn't end as I was hoping. Jake had been out of town for a few days so he could train. So, I leave kids in charge of the day. It's thanksgiving week so no school or big responsibilities. Colby and Jackie are glad I'm taking her in. They'd also seen her decline and my concern. 
    At the ER I'm brought back quickly, the doc had called ahead for me. I'm asked by a couple of people if she's my first. They hint that I have 'new mommy syndrome'. The doctor examines her and they run some tests including a urine sample. The sample reveals low blood sugar and ketones. The doctor is alarmed and rings the pediatrician who's on call for the day. The pediatrician enters the scene and notes that Jemimah is dehydrated. Well yes, of course she is dehydrated she hasn't eaten. They start an IV and get some fluids in her. I'm left alone with her for a bit. The doctor comes back and talks about admitting her so we can run some more tests. It's decided that the hospital in Fredericksburg isn't comfortable with her illness. Because of the ketones in her urine they are thinking she needs to be seen by genetic specialists. We jump through the transfer hoops and 4 hours later we are transferred north to the National Childrens Hospital in D.C.
   Upon our arrival she's given a big IV push to help with her dehydration. I'm asked again if this is my first. What frustrates me about this is the likelihood of new moms being turned away for the care their baby needs all in the name of 'new mommy syndrome.' What if I'd have said, yes? Botulism puts most infants on a respirator within the first week of exposure. I'm thankful for that feeling that something isn't right and I'm glad I've had enough children to know when to push and persist with doctors. So, Jem had an evening of IV fluids and a lot of suctioning. I was still trying to nurse her, but she just wouldn't latch on. It was as though she had forgotten how to nurse. It was a terrible feeling that was taking over me. I'd never heard of a two month old who wouldn't nurse. By the next morning I was having many visits from various doctors and med students. There was excitement in the air from them. I was growing more frightened. More blood was taken and various tests done. A CT scan was performed and some mild swelling of the brain was shown. We were then moved to the Pediatric Intensive Care Unit. At this point spinal tap is becoming a common theme, but because of the perceived swelling of the brain there could be risk of a 'vacuum' scenario where the brain could be forced downward and cause trauma or if there was too much fluid in the brain we could cause a leak from the puncture site. The next step is MRI. This showed what could be swelling or normality. In short, it was determined that the spinal tap would be safe as there was none to minimal swelling. The test needed to wait until the head of radiology confirmed the MRI reading. It was midnight so we waited until morning.

Wednesday November 27- This day proved to be challenging. Having your baby deteriorate before your eyes and grow into some queer paralysis was numbing. I was no longer allowed to try to feed her nor hold her. At this point she was sleeping and being tested for everything under the sun, except botulism, we needed a poo culture for that. She was prepped for her lumbar puncture and I headed for the showers. I came back to the room as the team was finishing her procedure. I saw her precious spinal fluid in delicate glass containers. The team was pleased that it was crystal clear. It was clear like water. I've never seen fluid from the body be so clear. This was a good indicator that there was no meningitis nor encephalitis. It was sent off to the lab.

Thursday November 28- We are waiting on test results and more urine and blood is drawn. Jemimah couldn't move her bowels. As a matter of fact she couldn't move at all. She deteriorated quickly that day. Her face grew flat and she was altogether a child I didn't recognize. Were it not for her name band I wouldn't know she was mine. My heart was heavy yet Somehow filled with an insurmountable thanks. Jake and I decided it would be best if he was with the kids and celebrate Thanksgiving without us. I stood by Jem's bed and watched her sleep. I was so thankful to spend the day with her. I thought that it may be the last Thursday with her. I felt privileged to be her mommy. I kissed her more times than I could count. I think she kept a moist place on her forehead for the day. After lunch Jake arrived and we started reading about botulism. We became increasingly concerned. It was as though we were reading about Jemimah. No fever, inability to nurse, floppy limbs, unable to hold her head up, constipated, dehydrated, she was not on a respirator. That was the only difference. Botulism could come from rivers.. We live near the rappahanock, construction sites.. We'd just had a fence put in and broke ground for a shed, honey ingestion.. We don't feed her honey, but we buy it by the gallon, and I drink it in my tea everyday. It was becoming apparent that she could really have this disease. The treatment was in California, it costs $50,000 it is only released through the authority of the state, we needed a stool sample! All of her previous tests came back perfect. We both slept not peacefully, he at home with our babies and me here with our Jem. We were both praying for the doctors to order the antidote to this disease on good faith. We were sure she was contaminated with the disease and was toxic. It was all too clear. The Doctors would be rounding in the morning I would plead our cause then.

Friday November 29- I had fallen asleep off and on through the night. 20 minutes here and there. Jemimah kept choking on her sputum. It was scary to wake up and hear her choking. I'd suction her little mouth and grab the nurse to tube suck her nose. I slept some more and then morning had come. 0530 brought the first doctor to look at her for the day. I stirred and slipped out of the recliner. Jem looked worse. How could it be possible? I was weepy. I'd told myself not to cry in front do the medical team. I needed to hold it together and communicate without a box of tissues. This effort failed as I looked at her. I told the neurologist I was convinced it was botulism. Somehow, somewhere, one toxic spore made its way to her gut. The Dr. assured me she would be okay. He said he would help her. It was time for the morning round in a couple of hours. Her team rounded outside the glass doors of her sick room. They agreed it was time to order the Baby BIG. This is the name of the medicine to treat her. We needed permission from the case workers at the hospital and the state lab in California had to approve its release. There's a short shelf life for the drug and because only 90 infants under the age of 1 will have botulism per year it's not handed out like Motrin. Big would be overnighted for Jemimah. Friday we watched and prayed and put it out there on the social networks for all of our Christ bearing friends to pray for her. I hoped and prayed she would make it through the day without being intubated. Jakes mom, Teresa, arrived to come help with increasing responsibilities at home. Praise God for her timing! We got the word that the drug was to arrive midnight. I was given updates where BIG was. It was in a van on a highway In California. It had missed the plane! The doctor was mad. It would make the next plane and arrive at 0230. It missed that one too.

Saturday November 30- BIG finally makes it to Dulles airport at 0830. By 0900 BIG was in the lab being reconstituted. I lay down next to Jem in my recliner. I consider how dangerous this life is we are all living and how I have no control over any of it! This frightens me and then assures me. I don't want the controls. I'm pleased God has them. I awoke an hour later as the nurse came in. She told me she had the BIG and She would administer it shortly. The nurses punched numbers and set up the first 15 minute interval. Jem was given Tylenol and Benadryl in case she were to have a reaction. The Big went in her veins, she cried because it burned. We wrapped a warm compress around the IV site. She took the first 15 minute interval well. The remaining BIG was administered. Everyone left the room. It was Jem and I. Jake soon arrived from home. He had to fly out for his last two weeks of training. He had tried to delay, and was told he could. However, he wouldn't be payed and all training to this point would be repeated. We prayed over our baby, kissed each other and away he went. It was a quiet and uneventful day.

Sunday December 1- Advent season begins. Jemimah is awake and looking around. She is very alert. She is smiling. Her eyelids are open all the way. The neurologist and I both agree she is improving. A few hours later she is pulled close and I am able to nurse her a bit. She still doesn't have her ability swallow back. But she can cough! She's working some mucus up and out to her mouth. I'm seeing a miracle unfold before my eyes. The last thing to return will be her reflexes. She's still unresponsive when we tap her knees. The neurologist assures me this is the last thing to return. Those nerves must mend and rebuild. We should be getting her botulism test results back in several days. It could take longer because all botulism labs are tested by disease control on a state level. We will be here for several days more under the watchful eye of several excellent doctors, disease specialists and nurses.

7 comments:

Mary Frances said...

Many tears were shed as I read this heartrending story. We praise God with you for your second miracle of life with Baby Jem. We continue to pray for full recovery.

Appollo Schloss said...

Thank you for sharing Christie. We will continue to pray for a speedy recovery and am so thankful for the progress already made.

dirtandrib said...

Love you. Glad Jem has excellent care. Thankful you are well informed and made the push for Baby BIG.

Yvonne Reynolds said...

So amazing how God works and so thankful that Jemimah is doing better! I pray that you are able to get some rest and that you will be able to return home to your family very soon.

Tiffany said...

We are praying for precious Jem. May God continue His miraculous healing in her body. Hugs!

Jennifer Worman said...

We have followed every update and have prayed so much for little Jem and all of you. Praise God for his healing and for your wisdom! Thank you for posting this.

Karen said...

My Dear Christie, This is from your grandmother and you know how much I love you and yours, I praise you for your wisdom and caring. May Jem make a speedy recoveory and you are able to return home soon. Love you much. Nan