Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi There! I'm behind in reading and posting...just saw your post about Matt. I'm so glad that he is doing so well... Thanks for the encouraging news...will continue to keep you and yours in my prayers! Take care, God Bless, Your Friend In Hope, Diane ;] Matt Recovery--LONG > > Hello to All- > > We are so very sorry that we have not posted. Matt's recovery has > taken a lot out of all of us, and we have been too overwhelmed update > you on his progress. Halloween marked Matt's 3-month anniversary > since surgery, and we are only now beginning to catch up. > Thanks so much for your inquiries... hopefully this > e-mail will answer all of your questions. For those > of you who don't want all of the boring details, you > can skip through all the BLAH, BLAH, BLAH (somehow > writing it all down is cathartic) and page right down > to " MATT IS DOING GREAT! " ****For our WACMA friends, please know > that we copied our other friends on this e-mail, so much of what is > covered here may seem elementary to you--you all know more than us. > We delved into some detail for the bebefit of our non-Chiari > friends.**** Here goes... > > > BLAH, BLAH, BLAH > > Matt's brain surgery on 7/31 seemed to go pretty well. > As you know, he was released after 8 days to finish > his recuperating at home. Things seemed to get a > little better for about 2 weeks when we started to > think that maybe everything was not going as well as > planned. We couldn't really put our finger on > it...something just did not feel right. Actually, it > was our dear friend that finally validated our > concerns when she too, felt that Matt had said " Tummy > Tight " one too many times. As parents, we all have > things we hope never escape our children's lips... " I'm > pregnant (at 16) " , " I'm addicted... " , " I hate you " > probably come to mind. For us, " Tummy Tight " sends > shivers up and down our spines like no other > declaration; because, as it turns out, these words > were a prelude to hell. What began as a simple trip > to the pediatrician to rule out a nagging fear (which, > incidentally, they did erroneously try to dismiss, but > thank GOD they did not succeed) ended up as 10 days > back at Lutheran General Hospital with Matt fighting > for his life. Twelve hours after calling 911 on > Sunday 8/27, an amazing pediatrician and a spinal tap > gave us our diagnosis of meningitis. Knowing your > child has meningitis is scary and awful, but NOT > knowing your child has meningitis can be deadly. We > feel fortunate that we were able to get a diagnosis so > quickly. The earlier you know, the earlier you can > plan your attack strategy. Just for the curious, > there are 3 types of meningitis out there: viral, > bacterial and sterile. One is not better or worse > than another. All three can be treated if caught > early and all can kill if left unchecked. Determining > which type you have can be tricky and treatments vary > widely. Even with all of modern medicine at our > disposal, we are still not 100% sure if Matt had > bacterial meningitis or sterile meningitis because of > a lot of complicating factors too numerous to delve > into here. Suffice to say, whichever it was, we were > fortunate enough to have a BRILLIANT team of > physicians working with him and ultimately they were > able to treat him with success. > Matt is unusual because only about 10% of these > brain surgeries result in a Dura leak and subsequent > meningeal trauma. And, unfortunately, it could come > back. While Matt is no more likely to catch a cold > than any other kid, his cold is more susceptible to > becoming meningitis should the virus, bacteria or > inflammation as a result of either cross the Dura and > settle in the meninges (the meninges line the inside > of the brain and the spinal column). That said, we > are trying really hard not to live in fear for the > next 90 days while his Dura patch re-adheres to his > brain (if he makes it to Thanksgiving without another > reoccurrence, we are pretty much home free). We let > him play with other kids, but we are nuts about > hand-washing and food-sharing. When he does get a > cold with a fever (which he did right after getting > released from the hospital), it is back to Lutheran > General for an evaluation to determine whether or not > a spinal tap is necessary. Fortunately, this last > cold went away without incident. Now on to the good > stuff... > > MATT IS DOING GREAT!!! > One chest x-ray, chest CT, brain MRI, Upper G.I. with > a lower G.I. follow-through, MAG-3, I.V.P, endoscopy, > Foley catheter culture, spinal tap, P.I.C. line, a > plethora of drugs and numerous blood tests later, we > can finally say that Matt is doing great!!! > If you saw him, you would be amazed. His headaches > seem to have diminished (the entire goal of the brain > surgery in the first place), he hasn't vomited since > the hospital, and the dreaded " Tummy Tight " rears it's > ugly head maybe once a week. He is off all medication > and most of his lingering issues are emotional. As > you can imagine, he is not a huge fan of strangers as > he probably wonders from which vein they will take > blood next. He has a really hard time napping and > sleeping for more than a few hours in a row (at the > hospital he was awakened for a procedure every 3 > hours) although this is improving. Like they say, > time heals all wounds and we really feel that Matt > will overcome all of these issues. As far as his > long-term outlook, no one knows for sure. Matt will > have an MRI of the brain and spine every 6 months to a > year for the rest of his life. He may never need > brain surgery again, but it is not unheard of to have > this surgery several times over the course of a > lifetime. The great news is that medicine is > advancing every day. What is treated today may be > cured tomorrow and as we move forward we try to think > positive. While there is not much of a silver lining > that can be found in watching your child suffer > immeasurable pain, we have tried hard to look at the > good things that have come out of this nightmare. One > of the amazing things has been the kindness and > generosity we have had bestowed upon us from so many > people. We have seen the best side of people as even > strangers have offered us food, babysitting and > prayers. Casual aquaintances have become steadfast > friends and close friends have become like family. > Our already tight-knit family is now seamless. But > probably the most amazing thing we have witnessed is > the strength and courage of our little 2-year old boy. > Not only did he fight for his life and win, but he > kept his spirit along the way. As we watch him enjoy > the Fall leaves out in the yard, it is clear that he > harbors no anger, resentment or self-pity as a result > of his ordeal. Rob and I have much to learn from him. > > Take Care and GOD Bless > The Family > > > > > ________________________________________________________________________ > ________________________________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
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