Yet another Seattle TV station came to capture Max's miraculous story last night...and the newspaper is doing a feature next week! AND one of Max's fans thinks the whole story (from the tumultous divorce earlier this year to Max's genetic disorder to finally coming home) would be perfect for Dr. Phil...so she is contacting him to pitch the story. (I love Dr. Phil, so I think that would be great!!!)
My thoughts are the more we can publicize children with special needs, the better. I want more people to understand what these wonderful and challenged children, like Maxwell, must endure and the incredible lessons they can teach us. The world needs to be more accepting, more loving and more willing to help do whatever possible to make their lives the best they can be. Ok, I'll get off my soap box for now, but just know that you haven't heard the last from me on this issue. Max and I are determined to help the special needs community receive more support...emotionally, mentally, financially, and physically.
I have emphasized to the newspaper that I would rather not focus the entire feature on Max's homecoming (which is of course quite fun but not necessary) but more on CHARGE, Children's Hospital and the special needs community and what we can all do to help. Hopefully the more we talk, the more people will listen.
Below is the link to last night's coverage...enjoy!
'I Got This Little Miracle'
http://www.komotv.com/news/story.asp?id=40941
Saturday, December 24, 2005
Thursday, December 22, 2005
SOME "LOGISTICAL" FRUSTRATIONS
EQUIPMENT PROBLEMS
I was particularly grateful for our amazing homecoming celebration because we had quite a frustrating day (and night!!!) dealing with the equipment issue. The company gave me little to no training and I had to keep pushing them to actually help set us up. Then on the way home, I am calling them reminding them over and over again that they didn't give us enough oxygen to last the afternoon and we would run out if they didn't meet us at home immediately. Then they did drop off tanks but each only last for hours...so in the middle of the night last night I am trying to change a tank for the first time...Max is having a desat...it was a little scary to say the least. I kept thinking, oh my gosh, what happens if I don't figure this out...am I really going to have to call 911 the very first night I am home???
INSURANCE BATTLE
On that issue, we are struggling because insurance is now denying home nurses beyond the "allowed" week, which is absolutely ridiculous. As the only parent involved in Max's care, that means I have to be at his bedside 24/7. Did that last night and it was quite exhausting already! And if I get sick (which I feel like I am about to), then what do we do? So the hospital and nursing agency are working together to fight the insurance. The insurance company is calling our bluff about having to be in the hospital if we don't have nursing care...and insisting that is where we should be if we cannot manage his care at home. Ridiculous! It costs $5000 a day to be in the hospital and less than $500 for care at home. We have quite a battle ahead of us!
But most importantly, we survived our first night at home. It's quite difficult in the middle of the night to be drawing out accurate dosages of multiple meds...I must have double, tripled and quadruple checked (Max was probably like, hey lady, gimme my meds!!!) and verifying the correct dosages (quite a laundry list of meds...the pharmacy even was surprised!).
I was particularly grateful for our amazing homecoming celebration because we had quite a frustrating day (and night!!!) dealing with the equipment issue. The company gave me little to no training and I had to keep pushing them to actually help set us up. Then on the way home, I am calling them reminding them over and over again that they didn't give us enough oxygen to last the afternoon and we would run out if they didn't meet us at home immediately. Then they did drop off tanks but each only last for hours...so in the middle of the night last night I am trying to change a tank for the first time...Max is having a desat...it was a little scary to say the least. I kept thinking, oh my gosh, what happens if I don't figure this out...am I really going to have to call 911 the very first night I am home???
INSURANCE BATTLE
On that issue, we are struggling because insurance is now denying home nurses beyond the "allowed" week, which is absolutely ridiculous. As the only parent involved in Max's care, that means I have to be at his bedside 24/7. Did that last night and it was quite exhausting already! And if I get sick (which I feel like I am about to), then what do we do? So the hospital and nursing agency are working together to fight the insurance. The insurance company is calling our bluff about having to be in the hospital if we don't have nursing care...and insisting that is where we should be if we cannot manage his care at home. Ridiculous! It costs $5000 a day to be in the hospital and less than $500 for care at home. We have quite a battle ahead of us!
But most importantly, we survived our first night at home. It's quite difficult in the middle of the night to be drawing out accurate dosages of multiple meds...I must have double, tripled and quadruple checked (Max was probably like, hey lady, gimme my meds!!!) and verifying the correct dosages (quite a laundry list of meds...the pharmacy even was surprised!).
WOW, WHAT A HOMECOMING!
Yesterday was a huge day from start to finish! The morning was absolutely crazy busy dealing with faulty equipment (VERY frustrating!), Max's very long of prescriptions, preparing the equipment for the long ride home, etc. and just basically wrapping up Max's six month stay at Children's. Nurses, doctors and patient's families from around the hospital were all dropping by to give their last "congratulations" to Maxwell! It was so heartwarming to see how many lives Max has touched.
THEN we arrive home and WOW, our hearts were once again warmed!!! WHAT A HOMECOMING! My biggest thanks to everyone who participated! I am still overwhelmed! If Max only knew how wonderful his fan club was, he would be sooo impressed!!! 
For those of you not in the area, my sister and brother in law had sent the word out to everyone that we were arriving home yesterday afternoon.
So when we drove up, there was a huge banner hanging over a main road in town declaring "WELCOME HOME MAX!" And then...we turn on to our street and there was a huge screaming crowd of people with "Welcome Home, We Love You Max" signs!
Then the TV crew came over (they drove from Seattle and had been waiting for hours) to the house and we did another interview there.
It was absolutely crazy, overwhelming and quite simply AMAZING! To see all of these people standing out for hours in the cold rain waiting to greet you and celebrate your son's homecoming....WOW, thank you everyone. You certainly made our day very, very, very special!!! It was absolutely perfect! THANK YOU!!! :) Your love and support these past six months has helped soooo much!
THEN we arrive home and WOW, our hearts were once again warmed!!! WHAT A HOMECOMING! My biggest thanks to everyone who participated! I am still overwhelmed! If Max only knew how wonderful his fan club was, he would be sooo impressed!!! For those of you not in the area, my sister and brother in law had sent the word out to everyone that we were arriving home yesterday afternoon.
So when we drove up, there was a huge banner hanging over a main road in town declaring "WELCOME HOME MAX!" And then...we turn on to our street and there was a huge screaming crowd of people with "Welcome Home, We Love You Max" signs!Then the TV crew came over (they drove from Seattle and had been waiting for hours) to the house and we did another interview there.
It was absolutely crazy, overwhelming and quite simply AMAZING! To see all of these people standing out for hours in the cold rain waiting to greet you and celebrate your son's homecoming....WOW, thank you everyone. You certainly made our day very, very, very special!!! It was absolutely perfect! THANK YOU!!! :) Your love and support these past six months has helped soooo much!
Tuesday, December 20, 2005
Graduation Day is Finally Here!!!
Tomorrow is Maxwell's big day...he is FINALLY coming home! (Thursday will be his 6 month birthday...finally we get to celebrate a birthday at home! But wow, what a reminder...we have spent the first SIX months of Max's life in the hospital...yikes!)
We are beyond thrilled to be coming home...and yes, a little nervous. While I have been very involved with Max's care, there still was so much more to learn! AND all new equipment...that is the tricky part!
Per my request, I have been meeting endlessly with each of the specialists just to make certain we are all on the same page. And of course, my anal retentive personality has me charting out his medicines and procedures for when we are at home...making up charts and check off sheets, etc. for me and the home nurses. I am doing everything I can to make this transition as smooth as possible. I have heard from every parent who has been through this that it is a VERY difficult transition. Here at the hospital you have a team of supportive nurses and doctors encouraging you, cheerleading your child and serving as a crucial back up when you need help. (It is sooo funny walking around the hospital right now, because there is such a happy buzz about Max's big day...I have definitely been here too long when I have made this many friends!!! They just adore sweet Maxwell!) So while I will miss that support, I think being in the comfort of our own home on our own schedule with family and friends (and my two wonderful pups!) around will hopefully make up for that.
Please keep us in your prayers tomorrow as we make the journey up north. The feeling of walking in my home with Maxwell in my arms is beyond words. It truly is the most intense, exciting, wonderful feeling in the world. I wish I could adequately describe it and share the joy!!!
And when I finally see Max with Barney and Shakespeare...WOW, you might have to scrape me off the ceiling, I will be so overwhelmed with love and happiness!!!
Suzanne Mom and Elizabeth are coming up to the hospital tomorrow to help us get home and celebrate the big day. Should be fun...and yes, a little crazy! Watch out Bellingham, HERE WE COME!!! :)
We are beyond thrilled to be coming home...and yes, a little nervous. While I have been very involved with Max's care, there still was so much more to learn! AND all new equipment...that is the tricky part!
Per my request, I have been meeting endlessly with each of the specialists just to make certain we are all on the same page. And of course, my anal retentive personality has me charting out his medicines and procedures for when we are at home...making up charts and check off sheets, etc. for me and the home nurses. I am doing everything I can to make this transition as smooth as possible. I have heard from every parent who has been through this that it is a VERY difficult transition. Here at the hospital you have a team of supportive nurses and doctors encouraging you, cheerleading your child and serving as a crucial back up when you need help. (It is sooo funny walking around the hospital right now, because there is such a happy buzz about Max's big day...I have definitely been here too long when I have made this many friends!!! They just adore sweet Maxwell!) So while I will miss that support, I think being in the comfort of our own home on our own schedule with family and friends (and my two wonderful pups!) around will hopefully make up for that.
Please keep us in your prayers tomorrow as we make the journey up north. The feeling of walking in my home with Maxwell in my arms is beyond words. It truly is the most intense, exciting, wonderful feeling in the world. I wish I could adequately describe it and share the joy!!!
And when I finally see Max with Barney and Shakespeare...WOW, you might have to scrape me off the ceiling, I will be so overwhelmed with love and happiness!!!
Suzanne Mom and Elizabeth are coming up to the hospital tomorrow to help us get home and celebrate the big day. Should be fun...and yes, a little crazy! Watch out Bellingham, HERE WE COME!!! :)
