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Old 07-09-2007, 05:12 PM   #91
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Thanks for the update. Sounds like he is doing great ... the little things sound like they can be adjusted. It does sound like there's perhaps too much feeding going on, but I haven't had that much experience. Won't he "complain" if he's hungry?? I am continuing to pray that Mikey will continue to thrive and be able to come home on Friday! God bless you all.
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Old 07-09-2007, 06:09 PM   #92
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Thanks for the update and pic....What a darlin lil boy he is....prayers still being said for Mikey's continued strength...and hoping that he is able to come home over the weekend....
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Old 07-09-2007, 06:12 PM   #93
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Mikey is a beautiful baby boy...I hope and pray that everything turns out well for him and his loving family.
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Old 07-10-2007, 12:36 PM   #94
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Default another not so good day

Becca has been on and off the phone with me all day. Mikey isn't doing good again. His brain is begining to swell again. He is not eating what he does he he vomits up. She did not write that in her email, but i will attach that to this post. He needs a lot of prayers again. I will also attach the candle ceremony to my post so all can lite a candle if you would like. These poor kids keep going through heck with Mikey. I wish that he would just get better and be able to come home. It doesn't look that way right now. I am to upset right now to really write much. I will try and post again later when I know more.
Becca 's email
over night mikey has become sick again. he has vomited and refused to eat. they did another ct scan today and found that the cystic hygroma has come down in size, but his ventricles are slightly larger. they gave us four options, and we are waiting for the one they choose. first, they could wait and watch. see what happens. second they could do another ETV (where they make the cut between ventricles 3 and 4), third, they could put in an external drain to reduce the fluid to buy them time, and the fourth, would be that they would place in the shunt. it isnt an emergency, but his head has started to grow in size. it was 41 last night and its 41.5 now. so we are more then likely expecting mikey to go in for brain surgery again. he has been very sleepy too, which is another sign of pressure on the head. once we hear the results and what they will be doing, i will update. thank you
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Old 07-10-2007, 12:39 PM   #95
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Oh, Val so sorry to hear that there is still such a struggle for your little man, Mikey.

You've got lots of prayers headed your way and we'll definitely light a candle.
Hang in there!
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Old 07-10-2007, 12:49 PM   #96
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What a sweet baby boy. I lit another candle for baby Mikey.
I pray he continues to fight this affliction and rallies back once again.
Come on Mikey were all praying for you.
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Old 07-10-2007, 01:24 PM   #97
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Praying for baby Mikey!
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Old 07-10-2007, 02:26 PM   #98
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i'm so sorry he won't be able to come home this friday, i was hoping that he would be able to we'll keep praying for baby mikey
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Old 07-10-2007, 04:40 PM   #99
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I lit a candle...and will continue to pray that Mikey will soon be well...
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Old 07-11-2007, 02:40 PM   #100
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Hey everyone,
Just wanted to try an update you all. Becca wrote a very long email today. she is very upset because a lot of family memebers are trying to get her to move Mikey to a children's hospital. so the bottom part of the email is not really for anyone but her family. I have a busy night. i have just got home not long ago. I just got back from taken Babybear for his accupunture, my son and girlfriend came for supper, now I have to go swim Babybear and do his other therapies. So I am going to put Becca's email up for you to read. sorry if she sounds a little harsh, but i guess she needs to put her point across.
we are still needing prayers. Thank you all.
hey everyone. i just wanted to let you all know whats going on with mikey. dad (chris) was up here today when the neurosurgeon came in, so it was helpful with him asking questions as well. first off, they decided they were going to wait it out. see what would happen, if he would keep vomiting and what not. he started to eat a little more and started to become active again. when neurosurgery came in again today, he said his soft spot is still soft, but you would call "full", so they are going to watch it even more carefully now. later one, when dad was here, dr. wilson (who was the doctor who performed the surgery to begin with) came in and went over a couple of things. he said that he does not believe (and it does not show) that the ETV has failed. what has happened, was when they first did the surgery, lots of fluid was able to leave the ventricles, which caused a spot in the brain to have nothing there. well something needed to be there, and the brain didnt expand quick enough, so some of the fluid that was released went to the right side of his brain and has stayed there. well now they are finding since this is reducing, the ventricles are enlarging again to fill the void. they have not enlarged a lot at all. so because of this, they are going to be placing a drain on the right side of his brain (an external drain) to "drip" the fluid out. this drain will be there for several days. this is because if they drain the fluid too quickly again, the brain wont have enough time to expand before more fluid builds up there. so if they drain it slowly, they are hoping the brain will fill the void. he said he will absolutely NOT put the shunt in right now. it poses more of a threat then anything, because the fluid would fill up in the spot on the right side and cause even more pressure to his brain then now, which would be taking a HUGE step back. he said three things could happen from here on out. one, he may need it drained again, depending on if the brain fills that void or not. two, they may place a shunt. and three, because the ETV has not techinically failed, he may still need nothing done. right now, its a waiting process. they didnt really want to do anything yet because of the infection. they didnt want to pose more of a risk of him getting it back or worsen it with surgery, but they feel this would be the best thing for him, as do i and mike.
we also had physical therapy and speech therapy in today to feed mikey so they could see what he is doing when he eats. he is still not eating properly again, which is weird because he was doing fine, then went downhill (signs of the increase pressure in his head). so tomorrow (busy day by the way) he will be brought to radiology in the morning and fed some juice and an xray machine will watch were it goes. just to make sure its not going to his lungs (cause he is coughing while eating). but he is delayed when swallowing right now. he keeps it in his mouth, and then a few minutes later, he will swallow (something he wasnt doing before). so they think he may have a delayed response in his brain. however, they believe this will go away once the extra fluid is off his brain. they are trying everything right now to find out what is going on. we also have another ct scan tomorrow to see what mikeys ventricles are doing. again, its going to be a busy day.
now, to get to the most important part of this update. again, i am having to put my foot down. i know a lot of both sides of the family have strong opinions that me and mike should be moving mikey down to boston. HOWEVER, the neurologist was the one who looked over his paperwork down there, not neurosurgery. the neurosurgeons who are up here, have already worked on mikey, and know what they are doing. he did not develope meningitis from the surgery, but from the removal of the stitches at his PCP. also, that would mean every neurosurgeon and neurologist would have to learn mikey from the start down there. the neurosurgeons here have alreayd signed on to mikeys case and have been up several times A DAY to check on him. they will continue to do so until they think mikey is okay, which will most likely be a good week or so. i am not trying to piss any one off here, but you all need to understand WE ARE THE PARENTS. STOP TELLING US WHAT WE SHOULD DO WITH OUR CHILD. we appreciate all of your concern, but we believe he is getting the right treatment here. IF ANYTHING WAS TO HAPPEN TO MIKEY, THEN IT WOULD BE ON OUR SHOULDERS, NOT YOURS. we are looking for SUPPORT right now, we are not looking to be TOLD what we should do. thats not support. there are alot of people who are upsetting me and michael right now, and thats not what we need. so please, if we ask you to not speak about it, dont. we understand people have opinions, and we appreciate hearing them, but thats all they are. opinions. we make the finally decision and dont intend on being told we did wrong because of it. as all of you have said, we are awesome parents, so why would it change now? we are doing what we feel is the best for our baby. now i dont care if i sound bitchy, cause like i said, we are starting to get very frustarated by having to CONSTANTLY tell people to BACK OFF! we are not saying you cant come up here, or you cant have an input, but PLEASE, respect our decisions. thank you
becca
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Old 07-11-2007, 04:43 PM   #101
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Prayers and support for Mikey and his family...I sincerely hope all goes well, I know how it is to have an ill baby in the family, although it was not mine...but I feel Mikey's doctors will know if he needs to be transferred some where else, do what is comfortable for you and Mikey. Trust in your doctors is so very important...they won't do anything to intentionally harm him, if they feel they are not able to help him, they will tell you so. Hope and pray that Mikey will improve, day by day...so that he can safely be able to go home with mom and dad real soon.
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Old 07-11-2007, 05:09 PM   #102
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Thank you so much for the update. I'm sorry there is controversy, however, in a situation such as this, it isn't uncommon. Becca & Mike have to do what they feel is in the best interest of their child and I totally agree with what she said about the doctors who have been with him from the beginning ... it makes perfect sense to me. I will be praying for Mikey and Becca & Mike. This has to be the most difficult crisis they have ever faced. God bless you all.
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Old 07-11-2007, 05:16 PM   #103
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Bless Baby Mikey, and his Mom and Dad... no one knows what they are going through and she is RIGHT! Just from these posts, I can see how strong they both are.... Good Luck to you all!
... going to light another candel for Mikey...
d
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Old 07-11-2007, 06:23 PM   #104
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Thanks for the update Val. I am sorry things arent going as good as we had hoped and Mikey wont be coming home Friday but the important thing is they figure out why his brain keeps swelling and get that taken care of. The rest will come in time and Becca is holding up so wee and you can tell she has a good head on her shoulders and wants to do what is right for Mikey. Prayers are going out for Mikey from Colorado tonight.
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