We are 1 day shy of being home for a week and so far things are going well. Maddie has for the most part, comfortable days and somewhat rough evenings. We are working with nurses who come out 2x a week and are available 24/7 as well as Maddie’s pediatrician to try and find a balance in her meds that will allow her to be both awake and comfortable at the same time. So far we have not been successful; however we will continue to tinker. Unfortunately it’s a reality that the balance we are in search of may not be a possibility. That being said she spends pretty close to the entire day, eyes closed and resting COMFORTABLY.


So far it has been an adjustment accepting the fact that Maddie is not the same little girl she was prior to entering the hospital on February 7th. The brain trauma issues aside, the facts that she cannot be intubated as well as not being a candidate for a tracheotomy have just about eliminated any chances of her overcoming another illness. So we are left with the grim reality that our little girl is in a very fragile state.


It is extremely difficult to share such news with all of you, but we feel it’s important to be completely realistic with all of you who have been thinking of and praying for all of us. Just as importantly we want you all to know that we will continue on as we have for the past 3 years, with faith, hope and love for our family.


It is great to be home and a family again; it has been a huge boost for all of us to be together. The look of pure excitement on Nathans face when he walked into the living room on Tuesday to be surprised by Maddie’s presence had Christmas morning written all over it, and can be translated into nothing less than pure love for his little sister. It has been truly amazing to see an almost 3 year old little girl who has never uttered a single word, extract that kind of love from all those whom she has come in contact with as well as those of whom she has never even met. We learn from her every day; she truly is an angel and we are blessed to be her parents.


We will continue to try and update this blog on a weekly basis or whenever time permits. We cannot express enough how instrumental all of you have been in getting us through the last 2 ½ months. Family, friends, faith, hope and love has carried the days during that stretch and will continue to carry the days well into the future.

God Bless

Rick, Ann and Maddie.

WE ARE HOME!

We were discharged at 11 am and walked thru the front door at 11:30. We will post more info once we are settled, we are waiting for the boys to come home and see Maddie;They have no idea! Just wanted you all to know she's home.

Happy Easter!

Hope everyone had a Happy Easter.

Well we made it through a weekend with out any crazy developments or setbacks. (A very lonng sigh of relief!)

Maddie remains at 32ml/hour on her feeds and is doing ok with them. We can tell the continuous feeds (24/7) are starting to catch up with her, but hopefully after today we will be able to put her back on her old schedule.

I say hopefully after today because we are cautiously optimistic that she is coming home tomorrow! Barring any setbacks over the course of the next 24 hours she will be coming home at some point on Tuesday, so I'm sure you all know what our prayers are focused on right now.

Nothing has really changed in terms of her condition that made the Doctors say she can come home, we are all just in the same train of thought that she might as well rest comfortably at home so we can be a family again. She will remain in need of a watchful eye around the clock for as far as we can see. She has been approved for overnight nursing at home, however there are no nurses or agencies responding to the request so Ann and I along with the rest of our family will be by her side throughout the days and nights to maintain her comfort and safety.

We will keep you posted on her arrival home.

Your continued thoughts and prayers are greatly needed and appreciated.

Ann, Rick and Maddie.

We are happy to relay to all that significant progress has been made in Maddie achieving a decent level of comfort. A couple of new meds have been added to the mix and they have been instrumental in greatly reducing any kind of pain she was in. She is heavily medicated throughout the day, therefore sleeping a majority of it. While this is not the state we prefer to see her in, it is a thousand times better than our only other option which is for her to suffer in pain.

We are hopeful that we may be able to bring her home by the end of next week. Feeds have been reintroduced and she is up to 32 ml/hour which is all they are requiring for her to be released. She has been at that level for 24 hours now and we are keeping our fingers crossed that she will continue to tolerate the feeds. Aside from that, the Doctors just want a little more time to tweak her current meds and find the perfect balance for her. She has been requiring occasional doses of morphine to treat pain and they would like to be able to eliminate those occurrences.

We will keep you all posted.

Ann, Rick and Maddie

We have been waiting to post since things have been a roller coaster to see what time would tell. Time is not painting a very good scenario for our precious little girl. She has remained on valium and muscle relaxer all week and yet she still remains very irritable and in very obvious discomfort at best 95% of the time. It seems the only time she isn't irritable or in discomfort is when she finally exausts herself from little to no sleep.



They have literally performed any kind of test and consultation you could imagine and all indications point to the significant brain trauma she has experienced. It has become very apparent that her being in arrest and the hour spent trying to intubate her was a catastrophic event. The doctors whom specialize in brain trauma have explained to us that children who experience the type and amount of trauma she has have a strong tendency to not fair so well. That in addition to Maddie's pre-existing diagnosis does not bode well for her at all.



Our focus now is her being comfortable. She has been struggling for quite some time now and does not deserve to be in such pain. Again we could not be prouder of the way she has fought so bravely. We just pray that she can be as comfortable as possible and ask all of you to do the same.

Ann, Rick and Maddie