A couple post surgery photos~by Beth

Here are a few photos of the pre and post surgery time in Miami Children's Hospital, as well as one of Johanna at HealthPark Hospital in Ft Myers before being helicoptered to MCH.  Dave and Christiana also ran the Turkey Trot 5k on Thanksgiving morning.  Also, Katie took senior photos of David while they were here, so here's one she took.

Siblings playing Barbies (Abby had Ken and Stephen had Barbie??)

Johanna after surgery feeling better

Abby and Johanna having a popsicle

6:15am Thanksgiving morning

Getting ready for the playroom, 3 days after surgery

Johanna ready to go home Saturday

Look at the difference in the swelling of Johanna's eye from Friday to Saturday.  Huge Difference!  They operated on her left side and told us that her eye would swell shut. We are so grateful for all that God did for her and our family.

David, class of 2015

Surgery, November 25, 2014, and beyond~by Beth

Tuesday, November 25th was a very momentous day.  It began with Johanna and I in MCH awaiting the arrival of all the family members who were in Florida driving across the state to Miami.  Jon and the family at our house had to stop on the way to pick up an MRI that Johanna had done in Cape Coral in July.  The team at MCH wanted to compare it to the ones they had just done to see if there was a change or if all this seizure activity was showing on the earlier test.  Jon called to say that Joel and Kelsey were coming for the day.  I was amazed but happy that our family would be together.  They actually arrived first and brought Johanna a get well balloon.  When Jon, the children, Nathan, Hannah, their two girls and Katie arrived I just scooped up my little Lydia and she and I delivered the MRI cd to neurology.  She clung to me and I clung to her.  I missed her so much and she sure filled that ache in my heart for her.  After that we all spent the next 3 hours together just enjoying the fellowship.  The surgery before Johanna's ran an hour late so they did not take her until 2pm.  But up till that time we all ate, talked, laughed, and loved on each other.  Of course Johanna could not eat, but she never complained.  I wish we had taken a group photo around her bed, and one of Johanna being wheeled away, but we never thought of it.  Fortunately Katie did take some so here are a few she snapped.

Katie and Johanna just before surgery began

Johanna being wheeled away to surgery

There is a wonderful family center where everyone went.  Jon and I went down to pre-op with Johanna and finished up the process with her.  We rejoined the group in the family center and had a very relaxed, comfortable time.  They called me just before 4pm to say that they had just made the first incision.  Cell phones are great!  It made it unnecessary to wait in the waiting room, making it much easier to relax.  The younger family members played video games, read, colored on the tables (covered with blackboard paper), watched a movie, took a nap in a wagon, etc., while the older members talked, watched the children, drank coffee, watched the Duggars on TV, and fellowshipped together.  Right around 8pm Dr. Hyslop came to find us in the family center and told us the surgery went very well.  They were uncertain whether they would get to do the surgery, or if they would just place electrodes on the surface of her brain to determine exactly where to cut. But, the area was "continuously seizing" and the surgeon, Dr Bhatia, resected it.  After placing the electrodes on there was still some seizure activity, so he resected a little more and then the area was "quiet."  Doctor Hyslop even took photos of the area with her phone and showed us the entire side of her brain, and then one where they held up a tape measure where they had cut.  The entire portion they took out only takes up the first segment of my thumb.  We were overjoyed.  Praise God for answering the, literally, hundreds of prayers being said for her that day all over the country and the world.  One friend shared the request with some believers in Ukraine and they prayed for Johanna.  God was so merciful to us all.  We felt the peace that passes all understanding. 
Due to shift change of nurses, we never did get in to post op, but the PICU nurse told us she woke up crying.  My heart certainly broke for her then.  They gave her morphine for pain and she went to sleep.  We finally caught up with her just after she arrived in PICU.  All the family members who were age 12 and older got to go see her, 2 at a time, before they left, including our dear friends from Miami, Steve and Kathy Hills.  They all left around 10:30pm for the long drive home.  I stayed in PICU again.  It was very noisy and she was getting lots of medicines every couple hours, so that did not allow much sleep for me.  She had anti seizure meds, pain meds, antibiotics, steroid for swelling, and Zantac to protect her stomach from the steroid.  She got sick to her stomach from the high dose of steroid.  For the next 3 days she could not keep anything down, again.  Once the steroid was decreased from 5mg to 2 mg, then she could eat, which began on Friday.

Johanna and Abby headed to the playroom on Friday

 She was moved back up to the third floor in the neurology department on Wednesday afternoon.  Thanksgiving she spent resting and then playing for 4-5 hours on the big WII that was brought in for her (physical therapy).  There was a Catholic church that had a large group of high school and college age kids who volunteered to bring Thanksgiving meal to those in the hospital.  I was one of the blessed ones to receive that.  Another volunteer had brought in a big poster with Johanna's name painted on it the day before and taped it on the wall, so I had all the volunteers sign it.  Later Thanksgiving day Jon, Katie, and Abby drove over and spent the next days and 2 nights with us in Miami until we were discharged to go home on Saturday.  Abby was good medicine for Johanna and the two of them giggled and played WII for hours.  When Johanna finally got the big turban bandaging off her head, we were able to wash her hair and let her go to the playroom for the first time since we arrived there.  For one reason or another she could not get there, between being too drugged up, being on video EEG, having a test done in radiology, waiting for transport that never came, etc.  We were determined that this last day we would indeed get there.  The photo of the the back of the two sisters walking down the hall is them heading to the play room.  Because it was Black Friday, they gave each of the girls Monopoly money to "shop."  Abby selected a car (remote controlled) and a watch.  Johanna selected a remote controlled truck and some earbuds.  Both girls were able to select a pillow case too and they both chose cute Christmas/winter scene ones.  They are both using them.
The two nights the 3 stayed over, we were privileged to  use a one bedroom apartment that are made available through MCH if a family has a child in the hospital.  Our friends that we met while waiting for the injection before the spect scan let us stay in the unit that they had rented for the week.  I took the opportunity to let Katie stay the last two nights in the hospital with Johanna, as she was pretty stable, and slept for two nights without a nurse coming in to dispense medicine or take vitals.  That was really nice.
Going home almost did not happen as we had to have authorization to fill one of our prescription drugs, which is extremely expensive.  The insurance office was closed.  The social worker found a Walgreens that would fill it and turn in the paperwork on the following Monday.  At last we were able to leave around 2:30pm on Saturday.  Joel and Kelsey had prearranged to bring pizza for our homecoming so they arrive just after we did and we all enjoyed pizza.  The next day we celebrated our Thanksgiving.  First we went to church, then had a family photo with every member of the family present for the first time since Nathan and Hannah's wedding in 2009.  Our neighbor took them for us and we took one of the best ones to use for Christmas cards. Johanna is just 5 days after surgery here.

Blikstad Family, November 30, 2014

We have so much to be grateful for.  God had mercy on us and answered so many prayers.  Praise the Lord!

Preparing for surgery~by Beth

The last test that Johanna needed to pinpoint where her seizures were originating was a spect scan.  This involved injecting an isotope within 20 seconds of having a seizure.  It would be effective for about 6 hours during which they would need to do the scan.  On Monday morning a nurse came in to tell us that another little boy needed the same scan, and asked if it would be okay if he could have his bed wheeled in our room and the child who had the first seizure would get the injection.  We of course agreed.  So, we moved Johanna's bed over, and in wheeled a little 8 year old boy named Sennett.  As we were waiting for our children to have a seizure we began talking.  Turns out they live 4 blocks from our home, and have all the same doctors in Miami and Ft Myers.  They are believers and were such a blessing to us in many ways while we were all there.
After about 30 minutes Johanna had a seizure so she got the injection and then was wheeled down to radiology.  The scan is similar to an MRI but the machine revolved around the head very close to the body.  She had to be completely still.  Before the test was over, with 15 minutes left, she had another seizure so that had to be scrapped.  They said they would try again but if it did not work then she would have to be at the end of the line.  In other words, that would have been over for her that day.  So, you can believe I was praying fervently.  To make matters worse, all the seizures and medication gave her a bad headache when she laid down flat.  She started crying with 16 minutes left and we kept encouraging her to stay still.  We were counting down the minutes.  Thank the Lord she made it.  About 1-2 minutes later she had another seizure.  That test was the last diagnostic one she would have before they would definitely put her on the schedule for brain surgery the next day.  If she had not been able to complete it, she may have had to wait another week for surgery as it was Thanksgiving week and having enough staff to man the O.R. would have been a problem.  In addition we would not have gotten to spend time with our kids from Texas after surgery.  The good news was that they discontinued the Dilantin so that she was able to eat.  She got dinner before she was not allowed to eat after midnight.  Jon sent out prayer requests for Johanna for the next day.  He sent one to our son Joel, who had not been in contact with us for a number of years.
The next morning at 6:30am Joel called and said that he and his wife would be coming for the day to Miami for her surgery.   We were overjoyed, and enjoyed having 9 of our 12 children there, along with 2 DIL's and 2 granddaughters.  I wish we had thought to take some photos of all of us before she was wheeled down, but only Katie got a few shots.  At 2pm that day they wheeled her down and Jon and I went with her to pre-op.  The other members went down to the family center where there was a lot of things to do.  Johanna was not anxious at all about what they were about to do.  We never really explained it to her, but I think she knew something big was coming.  When Jon asked her what she thinking about, she said that she was trying to see what kind of animal was on the curtain around her bed.  She was pretty calm. That's our Hannie.

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.

October 2014~by Beth

October was a nice month for finishing up volleyball for Charity and Christiana, and for Dave to finish up football. The girls went to state and Jon took them to Ft Pierce, on the east side of the state.  They did okay.

Later in the month Abby had her 9th birthday.
Beth worked at early voting for 12 our of 13 days, and boy was she tired trying to keep everything together.  During that time Johanna started having more seizures and starting, increasing and then discontinuing a new medication.  This would make 5 medications that she failed in 3.5 years.  It was a harbinger of things to come.  More on that next post.