I'm off to bed. Matthew is in critical but stable condition. He is sedated and the ventilator is breathing comfortably for him. I still have lots of adreniline, but I can also hardly keep my eyes open. This is new territory for me; someplace I never wish to visit again. Thank you, SERIOUSLY, THANK YOU to everyone who is praying for Matthew; and for all the kind words and texts. I'm not very good on the phone yet, but I can text and type okay with out crying (too much). You have lifted my spirits, calmed my soul and I even giggled once. Matthew is a fighter and he has a big God who loves him, and an unbelievable amount of people who love him and are praying faithfully for him.
KEEP fighting Matthew!!
11:15 pm update
Matthew "crumped" very quickly shortly after I updated. He was quickly (VERY QUICKLY) escorted to the PICU and intubated and on the ventilator now. Steve is here. We are praying for our sweet boy; but we are scared. Please continue to pray. ♥
Doc just left Matthew's bedside to talk to nurses in PICU. Looking to get a room for him. Talking about some hard things. Steve is coming.
8:30 pm update:
I feel like we are going from bad to worse. I don't want to worry any unduly and sometimes I worry that I'm overexagerating, I'm trying very hard not to. But my nurse/mommy gut says things aren't going well. If I had to guess, I would say that we will either have to transfer to ICU tonight, or we may be headed to Minnesota sooner than planned, if things do not change. Matthew is very puffy, he is not managing his secretions well, and his oxygen levels are not staying where they should be. The nurses are suctioning his throat and mouth frequently. They got out the ambu bag and put it in his bed (This would breathe for him if he was unable to). Though he is very sedated, his seizures are continually getting closer together. We have 2 doc's and 2 nurses at/around his bedside and in his room. I'm now starting to officially worry.
Talked with Dr. Doesher. He is happy with all we have done. He wants to give the current plan one more night. He says that if he is still as bad in the morning he will consider transport tomorrow evening or Friday morning. He does not want to do the ketogenic diet for Matthew due to the fact that he is currently on depakote and that makes the diet higher risk, and also because Matthew has a kidney malformation. So we will see how the night goes. Matthew is still very sedated from all of the medication they have given him, and Dr. Doesher was suprised that he was not on the ventilator due to all the medications we had given him.
EEG was done today. Almost all of the twitching events we are seeing are seizure activity :(. Which is bad since this started Thursday, and we thought these were the same thing he was doing in July. But we know now that they aren't. And he is still having these events even though he has SO much medication on board So the doc's have talked to us and given us three options
1) Fly to MN and have them evaluate him and start his plan of action. 2) Give the new meds some time to see if they help 3) start the ketogenic diet. (a high fat, high protien, low carb diet that can help children with difficult to control seizures obtain seizure control. Results with this diet vary widely. Some have great results. Some not so much.)
Right now I have a call out the MN. I trust Dr. Doesher immensely. I want to conference with him. I want to see what he thinks is best, to see if he has a bed for Matthew and if he thinks that being up there would help us sort this out (I think so, they always seem to get answers fast for us). I value his input and once we have his opinion, Steve and I will make a decision. I hope we can make this decision before today ends.
Thank you for praying!! We know the Master Physician is keeping Matthew ever in his care and are praying for him to guide the earthly doctors to make wise decisions in Matthew's care. I will update again if/when I have more information.
I updated my original post yesterday with what happened last night. I am going to use 1 post per day and just update at the top as I go along. This morning neurology has come through and Matthew will have an EEG today (this morning). We discussed medication options, and discussed the possibility of going to MN if Matthew continues to be a difficult case. He is not having large seizures, but having 90 second twitching episodes that happen every 5-10 minutes. We are unsure at this time if they are seizures, because Matthew likes to be difficult like that. In the past we have seen things that look like seizures, but are not seizures on EEG. Soo, an EEG will give us more information. I will try to update later today if/when I know more. Thanks for praying!!