Hello to all, unfortunately we have found ourselves in the situation where it is necessary to keep all of you posted on the day to day progress of Maddie. We are sorry if any of you have been left in the dark, however it has been difficult to keep up with the hospital and our own home let alone phone calls and text messages. We will try to keep this updated on a daily basis and are extremely appreciative of all of your thoughts and prayers.
Just to bring all up to speed: Maddie was fighting a pretty nasty head and chest cold the first week of February that wiped out her twin the previous week like no other cold we have ever seen. Maddie seemed to be holding her own as we were able to monitor her through her oxygen saturation levels in her blood and her heart rate via the monitor she is hooked up to 24/7 at home. On Saturday February 7th she took a very sudden turn for the worse and it was obvious that we had no option but to call 911. She was transported to Children's Hospital and arrived in severe respiratory distress with collapses in both lungs. At some point while trying to insert a breathing tube into her she went into cardiac and respiratory arrest but by the grace of God and the hands of so many wonderful doctors here, she was brought back quickly.
From the ER she was admitted to the Pediatric Intensive Care Unit where she remains to date. She spent 13 days on a ventilator basically in a medically induced coma so her lungs could rest. She was diagnosed with septic shock, pneumonia and RSV. In between arriving here and the present she has contracted some other bacterial infections which were caused by the various stages of her treatment.
Where she's at now: While her lungs have recovered from all the above described conditions, it seems every day there is a new obstacle that she is fighting through. She is still being weened off 2 major narcotics that were necessary during the ventilator stages so withdrawal is a daily issue. She goes back and forth between constipation and diarrhea. She has just about completely regressed from the progress we have made with her joint contractures over the past 2 years so minor aches and pains from stiffness and the lack of movement are an additional daily struggle for her.
Her prognosis: This visit in some sick twisted way may have been a blessing in disguise. It has been our goal to get her weight and body thickness to a point where surgery could be performed on her back that would increase her breathing capacity. For the past 6-8 months her lung Doctor has been discussing a breathing machine (V-PAP) we could use for her at night time to eliminate the number of breaths she takes on her own thus reducing the amount of calories she burns. Along with the machine she would need a procedure done in accordance with her current feed tube that would bypass her stomach and feed directly to her small intestine, greatly reducing her chances of aspirating while on the V-PAP at night. Introducing her to both would have required a 2-3 week hospitalization which we were reluctant to do. She has been introduced to both during this visit, but there have just been to many outside contributing factors to tell how she will handle either of them. We just need her to get her back to being Maddie before we will be able to tell. We are hopeful that once back to 100% she will tolerate both and be able to gain the necessary weight to get her to surgery.
It has been made clear to us by the Doctors that her body growing and her lungs not being able to grow in ratio are a concern so we really need her body to accept the V-PAP as well as the new feed tube as we are running out of options. So to answer the question that so many of you have been asking "what can you do, or what do we need";PRAYERS. Pray that her body accepts what they are trying to do for her. That's all we can humbly ask for.
The current focus is on her feeds. For some reason she is not tolerating them and she has the Doctors stumped. They try something different every day in attempt to rule out one thing or another. We are waiting for a GI consultation today to see what kind of input they may have. We're keeping our fingers crossed that they may add some insight to her current feeding issues.
As for the boys, they are doing good. They miss there sister however we're pretty sure they don't mind the extra wii time they are able to extract from there overly strict Grandparents and Aunts (just a joke Grandparents and Aunts, we are not judging).
On that note, how truly blessed are we to have the family that we do. They deserve so much recognition for the support they have given us. In fact, support does not even come close to descibing what they have done and sacrificed for us. We are so thankful for the help from everybody and while it is important for all of you to know and pray for what Maddie is going through, it is equally important for all of you to know and pray for what our day to day support team is going through as well. In a 24 hour period Maddie is only without family for an hour or two at most. Grandma and Grandpa get Nate off to school in the morning and hit the hospital in the afternoon (everyday). Mema is at the hospital every single night after her own work day and some days has gone from the hospital to our house or vice versa. Aunt Carrie's family has grown by at least one (Nathan) as they get him from school after spending mornings and early afternoons with Maddie (everyday). Aunt Carrie and Mema have even stayed overnight at the hospital so that we could have a couple "normal" nights as a family. Aunt Chrissy, with 9 month old twins, has been our daily lunch delivery girl at the hospital (even though I know it kills her to serve me, he he he) and is managing Ann's astronomical text message bill-Thank you. I know it's taboo to only mention a few names, and again all of you have done so much, we just feel that sacrifices of such magnitude ought not go unrecognized and they are critical support and should remain in all of our prayers so that they may remain strong and healthy throughout the duration of this saga. We need them!
I apologize for what surely sounds like a grim post, however it is reality and we just want all of you to be updated so we all know what we're praying for. Thank you again for your love,prayers and support and God's Blessing to you all.

Ann,Rick,Maddie,Nate,Zack,Luke and Louie