Hi. It's Kristen, bringing you...
Words from Jill:
Matthew's nurses said that matthew had a good night and slept pretty well. They do not allow you to sleep in the PICU here, but have amazing sleep rooms for the parents that live far away. I slept in today (8:30) and Matthew was asleep when I came in. Dr. Doescher came in and was ready to make some drastic changes in his medications. They got rid of 2 of his medications (Depakote and Tranxene) and halved his IV sedation (versed) and then started him on a new medication (felbetol). Matthew was still pretty sleepy around 2 pm so he decided to get rid of the IV sedation. He slept today until around 4pm and he's just starting to wake up. I've got a couple of smiles from him. We are going to probably take off one more medication this weekend that is very sedating and hasn't been working for his seizures. We'll have to see if the new medication keeps his seizures at bay. Time will tell. My friend and co-worker Vicki is here in the twin cities today and came up to visit. I snuck out of the room for a little bit and I was able to have lunch with her and her husband. YUMMY!! and so much better than hospital food. I enjoyed my mini break and knew that Matthew was in good hands. It hopefully will be a quiet restful weekend for Matthew.
6 comments:
Reading about the doctor taking away some of the medication and sedation, feels refreshing. Kind of like, wiping the board clean, and starting all over. We're praying that this will turn out to be a much more helpful, simplified approach.
I'm so ecstatic hearing about you being with Vicki today. Last night, as I was thinking about you, I felt worried that you might be lonely. I know you're surrounded by lots of people but it's not the same as being in the presence of someone that truly knows you. And so I said a prayer, that God would take care of that need for you.
That makes me smile.
Love and Prayers!
im soo happy for you and matthew. we will keep praying night and day for matthew. im very happy that you had a small break. keep your head held high.
Melissa and Jerry
I too, feel relieved that they are taking Matthew off of some meds! And I KNOW you are happy about that :)
What a blessing to be able to have lunch with someone from your "regular life".
I don't know if you are able to call or text from MN, but please, please do so if you want to chat! I'm so glad they have a comfy place for you to sleep. That is HUGE!
This has just been like a marathon for you both. You must be so exhausted in every possible way.
Hebrews 12:1-3, James 1:2-4
I am also happy to hear that you got to take a sanity break. These long stays can really take their toll on a Momma. It sounds like these docs are actually trying to figure out what is and isn't working - rather than just keeping him drugged up with everything they can think of. This is hopeful news and we'll keep praying that they find the right answers!
It's been go-go-go for us this weekend and I just now got caught up on the last few posts.
I think that trying the Keto diet would be well worth it. It didn't work for Elisabeth, but I know that for many children it is quite successful!
I am so glad that you had a chance to get out of the hospital for a bit and be with friends. It's important for sanity purposes, isn't it? :)
You and Matthew will continue to be close in my thoughts. I hope that you will be able to be in the comfort of your own home in time for Thanksgiving, and I pray that Matthew's seizures will be under control soon.
Take care, from your friends in Washington,
Lisa and family.
I feel bad that I haven't checked in for a couple of days! That's crazy that they don't let the parents sleep in the room at the PICU...good that they have nice rooms nearby, but still odd I think. I am so glad to hear that Matthew has been giving you little smiles and stuff - evidence that he's still himself even through all this!
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