PRAISE THE LORD!!!

We are flying!!! We will leave today, in probably a couple hours! We are set for take off!! PRAISE THE LORD!! I don't know if I can take my computer, or even if they will take me on the plane. I will update in Minnesota when I know more.

I'm at peace today

"Say to those who are fearful-hearted; Be strong, do not fear!!

Behold your God will come with vengence;

with the recompse of God, He will come and save you."

Isaiah 35:4

I spent some time on my knees and in my bible last night. I'm gonna let God work on the hearts of these doctors today.

3 hour tour

Today, Matthew had been doing so well since Friday afternoon,(he has actually been seizure free since friday) that they decided to it was time to move him back up to the normal floor and out of PICU. We arrived on 4th floor around 3pm. At 3:30 I looked over and Matthew was twitching. It was short; about 45 seconds. By 5:00 he had had 5 of these less than 1 minute twitches. Then around 5:30 he had fallen asleep (or so it looked) and then his o2 saturations dropped; dramatically...like to 74% and they wouldn't come up. We got the attention of the whole 4th floor and a few doctors too. Scared me. His pupils were still reactive, but pinpoint small, and he was not arousable. By the time we got him back down to PICU around 6:15 he was awake and smiling. Bizarre. I was comfortable being back where we would receive more one on one care, though.

All was looking well, and they were weaning him off of his oxygen tonight, we went to rounds and he was smiling and happy. Around 10:00, he did it again. Looked as if he was sleeping; perfectly still, and his sats dropped again to the low 70's. No one is quite sure what is happening. This is another reason we NEED to be in Minnesota.

Speaking of Minnesota, the saga goes on. Our neurologist I think is painting a much better picture of Matthew to his epileptologists than what is really happening. He told them we had been stable all weekend. Due to this, they don't want to see him until Thursday. So we sit. Tonight around 5 pm, I decided to take matters into my own hands. I called the doctor myself. I told him what was going on was unacceptable. I told him Matthew was starting to seize again and that it was important that we get him up there. He told me there was nothing we could do tonight and that they will address it in the morning. I intend on calling again in the morning. The squeaky wheel gets the grease.

I'll be honest, I'm scared. I feel trapped. I'm not sure we're being listened to. I feel like if we don't get there soon, it could be bad. BAD. It feels like we've let this go on too long. I'm starting to be very nervous of what Matthew's future is going to be; especially if something doesn't happen soon.

Please, PLEASE pray that God will make the doctors very acutely aware of what is going on here. Pray for Matthew. Nurses ask me how much of Matthew's baseline activity we are seeing. I'm telling them 10-20%. Pray that his little body holds on, and that his little brain is protected from the storm of seizures. And please pray for me and that the right words come from my lips. That everything I do glorifies God.

Sunday night

Today has been a very relaxing day. No new orders. Matthew has slept most of the day. I have noticed tonight that Matthew is having a harder time keeping his oxygen saturations up. They had to switch him from a nasal canula for oxygen, to a mask. I intend to talk to the doctor tonight at rounds. This morning they did not want to take away any of his medications( they currently have him on 5), but I have decided now that he is too sedated. I will ask to get rid of 1 of his seizure medications.

Nothing else new to report. Hoping to work on gettin' out of here tomorrow.

Late update

Sorry this update is coming in so late. Matthew had a very quiet day. He slept for the most part, but did have a few wakeful periods and we even got some smiles. Through the night last night they were able to wean down the drip he's been on to the lowest rate and all day he has been seizure free. This evening, the neurologist came through (one that is not normally working with Matthew) and did not want to make any changes. He is one of the doctors we've seen in the past and have not been overly pleased with. The intensivist (the doctor that runs the ICU) was not particularly happy with the doctors lack of enthusiasm to get Matthew off some of his medications; so he went over his head and did it. He says he doesn't believe he needs to be in the PICU, and he thinks his seizures can be controlled without all the medication he is on. We've had quite a few good intensivists here; and this doctor is no exception. He took Matthew off of 2 medications; one IV and one oral; and replaced the IV one with the oral form. He wants to make changes, but wants to go slowly. Matthew is resting comfortably and I intend to do the same.

Quick update on some of our new friends here. Thomas is starting to open his eyes more and look around and he is defying what the doctors have said about him. He is a fighter. Olivia, too, is amazing the doctors and had a complete turnaround in her chest x-rays and improving heart function. These new friends are just that; previous strangers pulled into life long friendships under circumstances that none of us expected. But we have all become fast friends; and have started having nightly "pow-wow's" in the waiting room to hash out our days. It makes the days easier. Thank you for praying them and all the other sick babies here in the PICU.

WE'RE BAAAACCCCK!

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.

Blog button

I great friend of mine with help from Micah made a blog button for Matthew...you can see it on my right hand side of my blog. If you like it and you want one for yourself...go here... and copy and paste the HTML in the box. Thanks Beth and Micah!!