November 2014~by Beth

November started with anticipation of our children from Texas coming for a visit for nearly 2 weeks.  Johanna had started having daily seizures around the middle of October, but only about 1-2 most days, and a few days seizure free. At the end of the month she had one day of 4 and one day of 8 seizures.  She began a new medicine on 10/29 and stated weaning off another. She began November having a few seizures a day.  By the 5th she had 7, but then only 4 and 5 the next two days. After that she began to go downhill fast, with the number and intensity of seizures increasing every day.  By the 14th of November, when she was admitted to HealthPark hospital in Ft Myers, she had had 22 seizures before we left in the late afternoon.  Her doctor had prearranged to get her up to PICU so she spent a mere 30 minutes in ER before they had her upstairs.  An EEG tech arrived to hook her up for video EEG.  Later her doctor arrived and was able for the first time to see a seizure and have one captured on an EEG.  His response after viewing it was that her diagnosis of Benign Rolandic Epilepsy was not correct.  She was helicoptered to Miami Children's Hospital about 27 hours later.  I went home to take a shower and pack some more things and Zach and I drove the more than 2.5 hours over to Miami.  We got there Sunday morning around 1:30am.  I texted that I had found my way to PICU  so he could make the long journey home.  We were down on vehicles for drivers, so we had decided that it didn't make sense for me to have one sit in the parking garage for who knew how long.
When I got there, I was shown my recliner next to Johanna's bed, and some cubbies behind for my stuff.  We spent a total of 5 days there.  She had video EEG during the whole time in PICU.  BTW, it is an open unit, so there are beds and chairs and curtains, not private rooms. Plus it is extremely cold.
On Monday morning Johanna had wanted to give some of the stuffed animals that she was given at HealthPark to the babies in PICU that she heard cry during the night.  But, that was not allowed.  When she was so disappointed, I suggested that she make them a card.  The child life specialist brought her construction paper, crayons and markers and a list of the names of the 7 children, including Johanna,  who were in the PICU that day.  Because her seizures were affecting her right hand and wrist, and all the heavy doses of drugs she was on, she could not write, so I did that part of it.  The child life specialist then delivered the cards that she made.  Johanna's bed was right next to two isolettes, and we were able to see the card delivered to baby Sophie who was 3 mos. old.  Her parents are from Peru and the mother wiped a tear from her eye as she read the card.  We talked over the next few days, and they gave Johanna a stuffed bear.  They ordered a Cinderella Barbie for Johanna for Christmas and brought it to the hospital when it arrived, after they had been discharged. Though there is a language barrier, the father told me that Johanna taught them that we always can give.  Another mother made a craft for Johanna and thanked her for the card for her baby.  The child life specialist was so moved by Johanna thinking of others that she gave her 3 Barbies, a Ken and a big cruise ship for them.  God was so good to us there, despite all the trials and the suffering that Johanna had to endure. 
We had the most wonderful doctor, Dr. Ann Hyslop, who came every day to evaluate Johanna and let us know what test they wanted to do next, what was happening, etc.  There were days that we simply waited to get something done.  Wednesday they finally got her in for a PET scan.  By Thursday she was finally moved up to the neurology floor, 3 south.  As soon as we got in there, they rushed her off for an MRI.  Trying to get these tests done with all her seizures was challenging. This happened during her MRI (a more detailed one than she had had in Ft Myers previously).  But, they planned a functional MRI the next day, so they said they would finish the last series then.  God was merciful and she was able to get through the functional MRI fairly well, though they did sedate her at the end to finish.  That was the beginning of her being sick.  From then on for 3 days she could not keep anything down.  Being on 5 anti seizure drugs simultaneously (Topamax, Vimpat, Dilantin, Valium, and at the beginning Ativan) made her sick.  They finally discontinued the Dilantin and then she was able to eat again. 
The hope was that they would be able to stop the seizures and send us home for a while and try to get ready for surgery.  But they could never stabilize her, so that could not happen.  I began counting seizures again after almost a week of just letting the nurses record them.  From 7:30pm 11/20 till 4:30pm the next day she had 30 seizures.  This was while still on all the drugs that they were giving her to control them.  From the EEG's they had pretty much figured out where the seizures were originating, but needed all these tests to pinpoint it exactly.  The last test she had done was the Spect scan.  That would happen after Nathan, Hannah, their children Lydia and Audrey, and our Katie arrived in Florida from Texas.  Here are some photos of them while Johanna and I were at Miami Children's Hospital (MCH).  More on the story next post.

Nathan and Hannah, married 5 years now.

Katie took some really pretty photos of Charity as well.  Here are two.

Katie, 27, and Charity 14

A verse that the Lord gave me before we ever entered into the hospital is from Romans 11:33-34
"Oh the depth of the riches both of the wisdom and knowledge of God.  How unsearchable are his judgements, and his ways past finding out.  For who hath known the mind of the Lord?  Or who hath been his counselor?"
I did not know what was soon to come, but I knew that my Lord did and I could trust Him.  Trust Him I did.