Friday, November 6, 2009


We did get our conference that we wanted and had some plans in place for transfer; but by mid morning it didn't end up mattering

Today, shortly after 11 am, Matthew began having seizures. He would just get over 1 seizure, get a short break and start another. The doctors tried giving him more medication and it didn't work. So the pediatric intensive care doctor came down and started an IV. They gave him more medicine in his IV; with no help. They gave him a third medication, and he still continued to seize. They made the decision to that we should go back to ICU and start him on a drip of medication that would stop the seizures. He was on this before and it required a ventilator. Well, that put my little poor tired mind into overdrive; and I did what I never thought I would do. I yelled. I told them we COULD NOT do this again. NO ventilator; no ICU. I can't do it all over again. I told them in no uncertain terms that we needed to go to MN now. After the shock wore off on everyone's face (I think they realized I was serious). They called MN right away; but the doctors in MN were unwavering. They did not want him there this weekend. All of the pediatric neurologists were off for the weekend and an adult neurologist was covering. They would be of no help to us. We were stuck. We had two choices. Continue to watch Matthew seize, or sedate him again. I crumpled into a pile of tears. We had no choice. We would go to the ICU. Once of the residents informed me (thank you dear resident for having the intuition to know I didn't fully understand) that sedating him didn't necessarily mean having to put him on the ventilator. I had a ray of hope that he wouldn't be ventilated and that we could get him seizure free.

When we got down to the PICU, the nurses could tell I was super frustrated. I told them what was going on and they immediately kicked into action. They said they would do their best to get us to Minnesota as quickly as they could; but we needed to restabilize Matthew first. The drip was started and within 1 hour he was resting quietly, not having seizures and breathing on his own. PRAISE GOD!!

As we sit here, Matthew is still sleeping comfortably. They are reducing the drip a bit; so we can get the exact dose he needs with the least amount of sedation. We are comfortable with his care FOR NOW. The work to start a transfer will start up again Sunday. I think I am learning a lesson on patience.

We're hoping for a quiet, restful weekend. Thank you for your continued prayers.


Echoes of Mercy said...

We don't even really know what to say...this was not the update we hoped to find when we checked in just now. Oh, Jill, how much we pray that the medical staff can get on the same page and figure this out.

Please, please do let us know if we can do anything to help out on the home front.

And we are continuing to keep you & Matthew and your family in our prayers. May you feel God's loving arms cradling you and His voice whispering peace to your soul.

Josephine said...

I am so sorry that this trial is apparently not over yet. I will pray super duper hard that everything will turn out alright for that sweet boy of yours. And I'm sorry about the frustration of not being able to get to MN. I pray they get you there first thing Monday morning and that the doctors there will be able to get you answers and solutions.

Hagens said...

Jill, We are very sorry to hear that Matthew was taken back to PICU. It sure seems like one step forward and then a couple back...but keep up your courage (and patience!).

It is our prayer that you and Matthew have a peaceful Sabbath's rest and are on your way to Minnesota very soon. We will keep praying for God's will.

"Now unto Him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us."
Ephesians 3:20

Carla said...

I am so sorry to hear of your recent time. continue to pray that you get the answers you need & that you get to MN first thing monday morning.

vickie said...


this is your green girls writing to tell you we are thinking about you and Matthew and your family. Please keep us updated, and when you get time call us today. We are here and worried about you and your wonderful son. I hope you got lots of sleep last night, or at least some sleep and that Matthew is doing better this early morning. Just so you know, we will be in Minneapolis next Friday also.
everyone else is rto'd but Karen M. is also here and thinking about you.

Keeslermom said...

Oh, this is so frustrating! I'm sorry friend! We are still praying!

Cheryl said...

Hang in there!! Patience is a virtue BUT you do have to stand up for yourself and especially Matthew. Just because it is a hospital does NOT mean they are doing everything right (I'm a nurse so I can say that)! Follow your instincts! Praying much for all of you.

Kristen said...

I read this update last night before I went to bed. I didn't know what to say. I still don't. My heart hurts for you all.

Tell Matthew to behave and we love him.

Michelle said...

Patience may be a virtue, but it's not terribly helpful in getting things done :-)

Our prayers continue as always and I sincerely hope that they have gotten Matthew stable again. Best wishes and God Speed for getting him to the right docs in Minnesota - how rude of Matthew to need them at such an inconvenient time as a weekend! *sigh* *hugs*