Hi. It's still Kristen, posting for Jill...
Words from Jill:
So things have not gotten any better today. After they started the IV, and gave him the IV medication (fosphenytoin), his seizures kept coming. They decided to load him with a third medication (ativan); and we did not get breakthrough in seizure activity. We had come to a dead end. The only choice left to break the seizures was ANOTHER trip down to the PICU to start a sedation drip (versed). So, now I sit beside Matthew's PICU bed. He is sound asleep and not having any seizures. I 've talked at length with Dr. D. We are getting to the end of choices of medications for Matthew. He has a couple more he will try and a few different combinations of medications. If none of these work, we will try the ketogenic diet. This is a diet that is high in fat, adequate protein, and very low carbs. For some reason, some children have awesome results with this diet. Some do not see any difference. I'm very tired of the roller coaster, and I can't imagine how Matthew is feeling about all of this. He has been through the ringer. I wish I could take his place. You don't know how badly I wish I could take this pain away from him.
Updates on our friends in the Omaha PICU:
Olivia is extubated and breathing on her own, but suffering from withdrawls of medications and having some very uncomfortable muscle spasms that could be a result of her possible brain injury.
Thomas is a fighter; he had a bit of a set back today and is needing some medication to bring his blood pressure up after a procedure, but he sounds as if he's holding his own.
I also met a mommy today of a 4 month old little girl who just got a diagnosis of 2 very bad forms of epilepsy. The doctor told her it was similar to the whole brain just being "scrambled". We hugged and the tears poured down her face, I was very quickly brought back to the times when Matthew was so little and how scary things were. Not that they are less less scary now; but I am somewhat used to seeing these things and God has given me an amazing sense of peace about Matthew. He loves Matthew even more than Steve and I do. That's so hard to imagine. Please pray for these three precious kiddos.
"Dear Friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed." 1 Peter 4:12-13
5 comments:
Jill, I cannot write this right now without tears streaming down my cheeks. My heart breaks for you all...this roller coaster and running-out-of-options situation sucks. Yet my heart does not stop believing that this is all that there is to God's plans. We know His heart...He said He works for our good (Rom. 8:28)...has our best interest in mind (Jer 29:11). I keep asking Him to work quickly. The Soldatke family needs to be together. That sure feels right.
Oh, Jill- I am so sorry the two of you have had to spend pretty much all of your autumn in the hospital.The verse at the end of your post is one of my favorites. The part that talks about participating in the sufferings of Christ made me think of how when Christ was suffering on this earth, God must have wanted SO badly to take his pain away. Just like you would do anything to take this from sweet Matthew.
If you have time, look up and listen to Nichole Nordeman's song "Why". Love you. We are praying often.
Avery and I have been praying for Matthew together every night before she goes to bed. I wish I knew what to say...you are one strong woman. I pray that one of these options does the trick and that all this seizure activity will stop.
Jill, Precious daughter of God who always seems to find something for which to be thankful: Hugs to you!
Hugs, prayers and more hugs and more prayers and more and more...
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