Sunday, July 6, 2008
Sunday Afternoon
We aren't too far off where we were yesterday, which is a good thing for the most part. He is back on the ventilator instead of the oscillator as he was breathing so far over the oscillator that it really wasn't doing that much good for him. He is still in a coma like state which is pretty much induced by the phenobarb he is receiving for the seizures. The news we received today wasn't phrased so much as when he woke up, it was a little scary to hear it phrased more like if he wakes up. Tomorrow an ECG will be done by Neurology which will hopefully provide us a lot more answers and possibly the extent of the damage done yesterday. He is having some twitching in his right leg/foot which they believe is some degree of permanent damage that will most likely last for the foreseeable future. His blood pressure has gotten a little better as has his renal functions. On a separate note and a kind of ironic note, the decision had pretty much been made to move up here last week with a transfer put in at work to get the ball rolling. I think our decision has been more reaffirmed the past few days as it's clear Daniel will require the care of some of the top health professionals in their field, something SC is lacking, at least where we are located. Any advice, thoughts, suggestions, etc on this move will be more than appreciated as of course we do not know really any people place or things outside of Children's Hospital and some parts of the city. We do know that we will have to be located a little north of here as the company I work for has not stores in this area. For now, we are once again (and always) playing the wait and see game. Hopefully tomorrow is going to bring us more answers. Until then.....
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4 comments:
Jason and Laura,
Ken was born and raised in Cincinnati, although he has not lived there for years. He does have a sister that does still live there.
It would be helpful if you could tell us where your company does have stores in the area. We may be able to give you some helpful information about those areas.
Rather than tie up the comment area you can contact Ken at kklueh@verizon.net.
Needless to say our hearts and prayers are with Daniel and also with the two of you as you go through this difficult time. We know that you are doing whatever you can for Daniel.
We admire your strength and pray for the best.
Love to all of you,
Nancy and Ken
Laura & Jason,
My heart sank as I read what has happened this weekend. I was shocked and deeply depressed when I read Daniel was put on the oscillator. I mean my heart sank, and felt like I just went numb! I I forced myself to read on. I was so relieved to hear that he was taken off the oscillator. This just further reinforced what a tough fighter Daniel is.
We will be waiting to hear what the tests and the ECG show. I will pray that there is no long term damage from his fevers and seizures. Hopefully the phenobarb is doing its job keeping the seizures under control until the doctors can collect more data to see what they need to do to make Daniel better. I will be praying that this coma like state is only short term & medically induced and allows his body time to rest & recover while docs continue to search for answers.
Has nothing shown up from that spinal tap??? If not, that is still very good, but if the doctors could only pinpoint what is wrong, I know they could fix it! You must be a bag full of emotions. So frustrated that you still have no answers as to what is wrong. So mad that no one can fix it. So scared for Daniel and worried about the what ifs and might bes. It's emotionally and physically exhausting! Now you have to think about moving and a job transfer. MORE SRESS! Just what you need. If it helps, when we were thinking of moving out to Ohio, some people recommended Mason, Westchester, and Hyde Park (but they were pretty pricey area, but with the market the way it is, you might be able to find a steal of a deal or even a forclosure). Ask hospital staff where they live and what they would recommend knowing what some of your family needs are.
Know we are praying for all of you during this difficult time.
Love always,
Maggie Boyce
Come on Daniel, you can fight this. My thoughts and prayers are with you all. My daughter also had CDH. I know what your going through. These kids are tough. Keep fighting Daniel
Kristy (mummy to Skyla CDH angel)
Hello--
I have been following Daniel for quite some time. Somehow I was hooked up to his original link through Cincinnati Childrens. My daughters (ages 6 & 2) both see doctors at Childrens also for less serious conditions. I tend to agree with you that they are the best doctors around. Daniel is often in our thoughts and prayers, along with your entire family. We live about 1 1/2 hours north of Cincinnati straight up 75 in a small town called Fort Loramie. My sister lives in Cincinnati however. With all the interstates so close even the Dayton area is only a quick 25 minutes away. There are alot of nice areas in Cincinnati, my brother in law, Coy has a mortgage company and is a realtor, I'm sure he would be happy to give you some HONEST advice on some good locations, his email address is coy@neighborhoodmortgageservices.com. I will be down at Childrens on Friday with one of my daughters if you need anything please let me know. My email address in fizzandamy@yahoo.com
Take care,
AMY HOLTHAUS
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