Back in Newark

So it has been just over a month since our last blog post. Reading it, I just noticed I kind of left everyone hanging.... Sorry about that. We are back at UMDNJ hospital in Newark, NJ. It seems our little Mary just can't catch a break. Jackson had a little cold all last week, mostly just a really runny nose, and despite our best efforts to keep the two apart, when you are home alone with a 2 year old, trying to take care of a 3 year old with SMA, it becomes impossible. So Mary finally came down with Jackson's cold sometime last Thursday. Ryan stayed home from work and we worked very hard to keep Mary cleared out, and stay ahead of the secretions, but they just became overwhelming and we were having to use lots of oxygen at home to keep her sats up so that is kind of our cue to start moving toward the hospital. At 4:00 am on Friday we packed up the van and headed to Keller, leaving Jackson sleeping in bed with our neighbor at the house. soon Ryan an Mary were in a helicopter on the way to university hospital. This time the helicopter started and we got there with no issues.
 Mary had been pretty stable through the weekend and we were going to discharge yesterday, we had the van all packed up, but before we left we wanted to do another treatment to get her good and cleaned out before we got on the road.  Following her treatment, she started desatting into the low 70's.  We brought the RT in and did a lot of NT Suctioning and just kept getting more and more secretions.  We decided to stay another night.  Tonight, we've had more of the same, Mary has been very wheezy, so we have been using pulmozime and albuterol.  Following her treatment at 2:00 am, we spent about 2 hours cleaning her out and almost filled a suction canister.  We just did the same thing at the 6 am treatment.  The RT says this is similar to the level of secretions he sees with RSV.  Her rapid RSV came back negative, but we are supposed to get the respiratory panel back today.  The doctor suggested that it could possibly be MPV.
Anyway, we are unable to get Mary completely cleaned out, she is still on her bipap, (LTV 950) we have her on 1 liter of O2 to keep her sats above 95.

Ryan and Kate

More Seizures....

So once again we were making plans to leave the hospital, they were talking either tomorrow or Tuesday, but then Mary had 2 more small, "localized" siezures this morning. So we are going to finally do a 24 hour EEG. We have asked for this twice before, and had they done it, we would have certainly caught one of these many seizures on EEG and video. We are a little frustrated by that....
They are also going to up the dose of VPA a little quicker to try to control the seizures. We also got them to start the L-carnitine, based on Dr. Swoboda's recommendations.

More to follow...

Mary update

Mary was extubated today, despite having another seizure last night. Ryan even got to pull the tube out, which Mary was very excited about, but I think Ryan was even more excited! She has been doing well all day, keeping her O2 sats at 99-100 on room air both on and off bipap. She has had more secretions than normal, probably because of the irritaion from the tube. Her speech has taken a little longer to come back, but her voice is becoming more understandable. It sounds like she is talking with a very sore throat.

Mary is in good spirits and has been asking when we can get out of the hospital. The sweetest moment of the night....
Mary and Kate were talking about the events of last Saturday night and Mary said out of the blue "Mommy, I forgive you" and then she said "daddy, I forgive you too". This totally caught us off guard and we didn't really know what to say. We just gave her a big hug and tried to hold back the tears. It is really amazing how deep and absolutely amazing Mary's mind is!

We love that little girl!

Nervous Anticipation

First, thanks to EVERYONE who sent videos! Mary absolutely loves watching them! You should see her face light up and her smile (even with a tube in her mouth!!) when she watches them. She likes to show them off to the nurses and doctors when they come in.

Another fun moment tonight, Mary called her little brother Jackson and put him on speakerphone, we sung the "I wanna ride on a fire truck" with him. Both he and Mary really enjoyed singing it and Mary really liked hearing from her brother, she especially liked it when he said "I wove you Mimi!" (picture a 2 year old talking). I wish this hospital had wifi, I would love to see them Skype with each other!

OK, so now for the update: the plan is to extubate around 10:00 tomorrow. Kate and I are a little bit nervous, because of what happened last time we exutbated with the seizures, and the risk of them happening again. However we are very hopeful that they will not return. Mary is definitely ready to get the tube out, it seemed to really be bothering her today and she even told us that is was hurting her, which is unusual for Mary. She is such a strong little girl.

So our request for tonight is that everyone continue to pray for Mary (we know you will). But specifically pray for her strength tomorrow during the procedure and pray for her to remain seizure free, pray for her lungs to remain clear once extubated, and pray for her beautiful little voice to return!

Thank you to everyone for your continued support and prayers!

R and K

A video challenge!

Mary responded so well to a little video that she got from her friend PJ this morning! So we decided to do another challenge! Take a few seconds to shoot a get well video or a fun video for Mary. Then either send it to us at Ryan@miracleformary.com or post it to YouTube and send us the link or post it below. Also let us know if you would like us to share the video in her blog (if you choose the e-mail option).

1, 2, 3, Go!

Another day to give thanks

Today we are thankful for:

-The millions of prayers that are being said....
-grandmas and grandpas who came to visit....
-the neurologist giving us a glimmer of hope by telling us the swelling should go away and there might not be permanent damage.
-Mary getting LOTS of rest today....
-each other (I LOVE YOU KATE)
-my work, which has been absolutely 100% supportive
-our friends and neighbors who are watching Jackson
-clear lungs....
-no seizure activity on the follow-up EEG

I could go on and on.

The plan right now is to prepare Mary for extubation at 10:00 tomorrow. Everything has to go right tonight and in the morning, but we are praying that she will be ready. Please continue to pray for mary's strength and pray that she will be awake and ready to extubate and breath on her own in the morning.

An Emotional Roller Coaster

To say the least, the past 72 hours have been an emotional roller coaster, from walking in on a scene from a movie, Mary blue and unresponsive, to a scary ER trip to Keller, to the helicopter not starting, to just a day later, Mary being extubated and acting like her old self again, to making plans to come home this morning, then at around 1030 today, or world seemed like it came crashing down, when Mary started having seizures. All of the fears that we thought we had avoided, because Mary seemed to be acting just fine, came rushing back. Kate and I have both been so overcome by emotion, Uncontrollable crying, etc. As the seizures continued to come throughout the day we feared the worst. Then when the doctors tried to reintubate, and it didn't take and we watched her o2 saturation go to 4, the unthinkable crosses your mind.

Luckily, we do have a lot to be thankful for. . . Great doctors, nurses, and respiratory therapists who were able to reintubate Mary and are continuing to care for her, thankful for the thousands of people who are praying for Mary, thankful for family who rushed to be with her from all over the country, thankful for great friends back at West Point who have taken care of our son, and made trips down with supplies and food.

Mary is finally resting, she had an extremely rough day, to go along with the seizures, her temperature soared to over 102 for several hours, we had to use a cooling blanket to finally bring it down. Her heart rate has been in the 170's or above for most of the night, and has finally started to come down. We are very thankful for that.
We hope that tomorrow mary continues to improve and we get the results from the MRI and hopefully it will help to answer some of the unknown.

Please continue to lift Mary up in prayer to our Heavenly Father.

Mary update 2 November

So we thought Mary had a good night last night and we were making plans this morning with the doctors to go home tomorrow. However, Mary started having seizures at about 1030 this morning and the have continued. We have done a CT Scan and doing an EEG now. Hopefully MRI later today. We don't have any results yet, but we suspect that the seizures are a result of lack of oxygen to the brain on saturday night, since she has never had seizures before.

PLEASE continue to pray for her full recovery. She is a strong girl and she will make it through this. Just please continue to pray for her and ask all of your friends and neighbors to pray.

Thanks
Ryan and Kate

A Special Visitor!

Mary received a special visitor yesterday! Her grandma Martha flew in from Michigan to help out with Jackson. It was a big pick me up for Mary to see her grandma! She brought her the brand new Tinkerbell movie, which was great, because Mary wanted to be Tinkerbell for halloween. She has watched it 3 times already!

From Drop Box

Special thanks for Martha for dropping everything and flying in to help out. She is always willing to do so, and we are very grateful.

We would like to ask everyone to keep praying for Mary. The plan is to extubate today as long as things continue to go well.

Mary in UMDNJ hospital again....

Many of you probably already know, but Mary was emergency intubated last night and taken to the PICU in Newark. (same room # and address as below in blog)
She has been doing really well since her illness last month. She was still on her antibiotic treatment but had been healthy, and back to school, no fever or secretions, etc. So Kate and I decided to go to dinner together, which we haven't done in several months. We stayed local, only a mile from the house, we were done with dinner and going to stop by a friends house on the way home when we saw the fire trucks go racing up our hill. Our babysitter called at the same time and our worst nightmare was realized. We were just a few blocks away, we raced home to a yard full of emergency vehicles. initially the MPs wouldn't let us in the house, because they didn't believe we were the parents, despite all of our neighbors telling them we were. Had to resist the urge to take him out. Litterally.
Walked in mary's room to a bad scene, purple, no pulse ox hooked up, no O2 being used, which it should have been.....

Started bagging, got her up to 100%. Moved to Keller ER (4 blocks away). Anesthesiologist tried to intubated, failed, lots of blood, trama to airway... Got it the second time....ugly. stat flight arrived. We put her in the helicopter, I climbed in front seat, waiting for pilot to crank, ..... Nothing. Dead battery.
Jumped in Ambulance and drove to Newark.

Mary is stable and responding to us now. She is still intubated.

We don't really know what happened last night, because she had been fine. We are both kind of beating out selves up about leaving since we never leave her alone without one of us there.

Please pray for a quick and full recovery.

/r

Goin' Home!

So if all goes as planned, we should leave the hospital at UMDNJ in the morning. Overall our stay here has been good, the level of care was phenomenal! We have several wonderful doctors, nurses, and respiratory therapists to thank! So to list s few of them.... Drs. Navado, Kaur, Aguilar, and Euginia. . . Nurses, Elsa, Monica, Kate, Binda, Mariama, Violet, and many more...
And RT's, Luis, Richard, Diana, Mark, Ester, and Paul.

Thanks to everyone who send cards, emails and letters and to everyone who made us meals and shuttled Mary's food and our clothes.

Thanks most of all for all of the prayers, for that is what truly brought a quick recovery. We have lots of late nights of treatments ahead of us, so continue to pray for our strength and Mary's healing.

Mary Update and a Special Surprise!

Mary was successfully extubated at 11:00 am on Wednesday morning, she did very well during the extubation and was quickly put on room air via the ventilator (no supplemental O2). Since then, we have had a few rough nights, with Mary having a few mucus plugs in her upper airway and having desaturations down into the 60's (% O2). Again, this was a little scary for us, because it was very similar to what we were dealing with before Mary was hospitalized. The other problem we are now having is Mary not being able to maintain proper tidal volumes on the ventilator because of leakage, so basically the vent alarms every couple of minutes during the night. So none of us are getting much sleep. We were also moved to a smaller room in the PICU, which is the size of a sardine can, so we are always on top of each other.

On a positive note, we've received literally hundreds of cards and pictures from all over the world! We successfully filled all 3 windows in Mary's old room, and have since moved them all to the new room.

Mary also received a special gift from the Army Hockey Team (special thanks to Cadet Cody Ikkala). Mary got an autographed Army Hockey shirt and hockey stick along with the following video!




Mary thinks the video is awesome and shows it to everyone who comes into her room! I think she has watched it on her iPad over 100 times!

Thanks again for all of the prayers, letters, visits, food, and support!

Praying for a Safe Extubation!

So the conditions are finally set for Mary to be extubated. This will probably happen around 10:00 this morning. Please lift Mary up in prayer and pray that everything goes smoothly during the procedure. For SMA patients the first 4 hours after extubation are the most critical. Kate and I are very nervous about the whole thing so please pray for our strength as well.

On another note, the pictures from all over the US have started to pour in! Thanks to everyone for sending them so quickly! Mary has enjoyed looking at them and didn't
T want to hang them all on her window, because she was to hold her favorite ones close to her! Isn't that sweet?

We will continue to update.

Mary Receives 105th Airlift Wing's Young Champions Medal of Honor!

Yesterday, Mary had the special honor of receiving a Medal of Honor from the 105th Airlift Wing, Stewart ANGB for being a "Young Champion". The Young Champion Program was created in 1998 to recognize the courage of children who have battled or are currently battling life-threatening or debilitating injuries or illnesses. Although Mary could not attend the event in person, because she is in the hospital, Sue Manning, the person who nominated Mary for the award, accepted the award on her behalf and then delivered it to Mary in the hospital. Sue is pictured below giving Mary her award.

From Drop Box

Mary has RSV and a challenge!!

I'm sure many of you have heard by now that Mary has been very sick for the past few weeks. Mary tested positive for Psuedomonos and we spent 5 days at Westchester hospital PICU last week, and went home last Sunday. Then Mary was still having lots of trouble so we went to see Dr. Bach (www.doctorbach.com) on Wednesday. He admitted us to the ER at UMDNJ in Newark, NJ and by that time Mary's left lung was totally collapsed! Mary was quickly moved to the PICU where she was intubated. She later tested positive for RSV. Mary is still intubated and having some trouble with LOTS of THICK secretions. But we are working dilegently to keep her lungs clear. Now for the challenge!
Mary has 3 large windows in her room, we would like to completely fill them with pictures and cards from friends and relatives! Please mail them to:
The University Hospital
G PICU, Room 420A
Mary Nelson
150 Bergen St.
Newark, NJ 07103

PLEASE KEEP MARY IN YOUR PRAYERS!!

Mary's Trip to the Museum of Natural History

A few weeks ago, Mary was able to visit the American Museum of Natural History in New York City.  A special thanks goes to Mary's great aunt Danielle who was able to hook us up with a special VIP tour.  Mary had a blast and we got to see SO many neat things.  She especially enjoyed the walrus and the brontosaurus.  Since the visit, Mary has watched Night at the Museum like 20 times!!! In fact, she is watching it as I type this!!
Thanks to all who made this trip possible, especially, Danielle, and Jackson's babysitter, Diana.

Walk for SMA

In June, Mary and her family had a great opportunity to go to the beach in Long Island and meet with other SMA families to Walk and Roll for a Cure for SMA!!  We had special "Miracle for Mary T-shirt made for the event and over 25 friends and neighbors from the West Point community came out to support Mary on the walk.  Mary made it the entire 3 miles, despite the sun and heat!

Notice, Mary was smart and asked for her BiPap before the walk, and she had plenty of shade as well!!!

MaryTurns 3!!!!!!!!!

Our little girl turned 3 today!!! She is such an amazing little miracle and we are so proud of her for becoming a big girl! She will even start school soon!! Because of the 2+ FEET of SNOW! Most of her family could not make it into town, because flights into New York were canceled. We also couldn't have the party at the West Point Train Station, because they hadn't dug it out yet! So we had a "Bee" Party at home and it turned out great. Mary had all of her little friends there and even a few special surprises! (see pictures below)






Mary drawing with her friends...

look at the concentration!!

Buzzzzz....



Mary's first special surprise, her friend Sophia, who turned 1 yesterday, came all the way up from Long Island to see Mary for her birthday!!  It was so special to see her and Mary just loved playing with her and showing her all of her special toys!!

Sophia and Mary holding hands...



sweet smiles!!

And here is the 2nd big surprise . . . ELMO!!!!!

more smiles!!!



and TIGGER!!!!!



Limbo daddy!!



the family!

Mary, Mommy, and Tigger!!

Mary's best buddy Caleb with Elmo and Tigger



Big Smiles!!!

Elmo and Tigger with Sophia. . ..



Jackson even joined in the fun, and he wasn't even scared of him this time. . .

Josie watching Mary open her present. . .

Mary talking to Sophia. . .



Lastly, Jackson showing off for the ladies. .  . .