We’re still here trying to figure everything out. I am going to make this short as I have been awake for almost two days, and I’m not even the manic one, but fear I will be soon if I don’t get some sleep. Lucy’s dye study happened around noon today. Conclusion, the line is most likely clotted off, no real surprise there. Another round of TPA was ordered and IV team was successful in unclogging the stuck lumen, but round two was ordered so that we can get blood return back on the other lumen. We are still in the process of doing this at 11 pm tonight. Our hope in the morning is that we have all of our hardware issues resolved so that we have enough points of access available to us so that we can transfuse blood product. If we are unsuccessful then surgery will have to be consulted. We are hoping for the non surgical option.
We increased Lucy’s Keppra dosing for the fourth time since starting her on the med two months ago. We also started her on IV valium in hopes of having it help with seizure control as well as behavior/sleep issues. Lucy has an awful paradoxical reaction to benzodiazepines of which valium belongs in that category of meds. To say that I was nervous about starting her on this med tonight would be a huge understatement(remember I mentioned that I have been awake for almost two days the last thing needed is a paradoxical med reaction), at the same time I was the one who told our doc that I think we need to try it and see if it works. He was in total agreement, but jokingly said to give her her first dose after 5 pm as he was not going to be in the hospital after that time…ha ha. Much to everyone’s surprise Lucy has yet to show any paradoxical reaction to the valium. In the past these types of reactions happen quickly.
As always we are being well taken care of here at the hotel DuPont, and are relieved that we have been able to resolve so many issues in a short period of time. Thanks for all of your thoughts and prayers, love and support!
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Hi Nicole - I hope you got my email the other day. I totally don't expect you to be able to respond, though,just wanted to make sure I had the right email address! Sleep would be MUCH more of a priority! I just briefly filled Cora in on how Lucy was before she left for school, and she told me that she would be praying for Lucy in school today. And we'll be praying here from home. May you feel the LORD's presence in very real ways today, Nicole. He will never leave you or forsake you (or Lucy)!
Praying for you...I hope you were finally able to get some sleep...someone told me recently that our kids aren't special needs, they are limited editions..I have to agree since these little girls never make anything easy, big hugs and prayers for you and lucy
joan & hannah grace
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