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.
5 comments:
I've been gone all day and soon as we returned home and got settled in, I came straight to the computer to check on Matthew. I feel pleased to read about his seizure free day. Praise Jesus! And another praise about the two other kiddos. I feel so spurred on to keep the prayers coming strong. I am so thankful that you have found some kindred spirits among the other parents there. It sure does help during such times.
I'm so pleased to hear that Matthew's seizures stopped and you were both able to get some rest. I will pray that tomorrow brings better answers for your family.
I'm home with my 2 big kids that i missed,not thinking about those 3 precious M's that i am also missing. Thanks for letting me be a part of your energetic household. It truly was an inspiration for me. xogrmaD
what a relief to hear that he had a seizure free day! I'm glad you're able to find some support and friendship in the families that you have met in PICU.
I hope that you have gotten some rest today and pray that Matthew continues to do well!
I'm so glad to hear that Matthew had a good day, but delighted to hear you had a nice, low stress day! How wonderful that Matthew's new friends are doing better too! Praying hard for a flight this week!
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