Adam James Faust

Adam gets a new suit

2010-06-07T19:52:00.000-04:00

Adam continues to do well. He got a new suit this week. He is
definitely in his terrible 2s but still is a happy and cheerful boy.

Great Day - Walking

2010-02-23T23:11:00.002-05:00

Today Adam took his first steps by himself in over 6 months. He walked from person to person several times and was very excited and playful during all of it. Here is a video of Adam walking to his mother. It truly is a great day.

Adam continues to progress and heal. He had a great visit to Shriners a few weeks ago and they thought he looked great. Adam has outgrown his first set of compression clothing and has now received his second set--he is looking good in his new duds. He can say about 8-10 words including "Dadda," "Momma," "all done," "ball," "this," "more," and "Elmo." We hear "all done" a lot when we are doing his stretching and care. Adam loves watching Elmo on Sesame Street while he is receiving his morning and evening care. Elmo has been integrated into the routine.

Thanks to all for your continued thoughts and prayers.

Adam is one happy boy

2009-12-22T20:41:00.001-05:00

We sure love this little boy. The pins in his big toes have come out
by themselves at Adam's grandparents house. We were warned it could
happen and he is doing fine. He has been so happy the last week or so
we had to post a picture.

We are still working on walking. He is crawling all over the place and
pulling up. We can walk him around and he doesn't cry. We think Santa
is going to grant our wish and Adam is going to walk by himself soon.

Post Surgery 12/1

2009-12-01T14:46:00.003-05:00

Here we are back at Shriners Hospital. I knew all along we would have more surgeries I just never imagined it would be so quickly. The surgery today was long today but Adam is now back resting in his room and I feel hugely relieved he came through this so well and that I can be next to him again. He had pins put in each of his big toes. It looks like he has a couple of those sewing pins with the color balls at the tip coming out of his toes (only it's some much more clinical name). This is to help the toes straighten out (they were really pulling down). He then had a release on the back of his right knee. Grafted skin doesn't always stretch at the joints as it should so as Adam grows, he will have "contracture" surgeries helping with his range of motion at the joints (knees, elbows, fingers, toes, etc.). He had his first one of these today and the hope is that all of this will help him to start walking. He will wear splints on his feet to keep his legs and feet in the proper position. They will come off in one week. At that point we have to "rigorously" (DRs word) work on getting Adam to walk in order for him to keep the toes from curling back up or incur further foot/leg problems. So....when we go see Santa this year, I'll think I'll ask for my baby to re-learn to walk. I couldn't ask for anything more.

12/1 12pm update

2009-12-01T12:04:00.000-05:00

Adam is still in surgery to put pins in his big toes on both feet and releasing the skin that is contracting behind his left knee. The pins will remain in his toes for a couple of weeks to straighten the toes out. The release behind the knee will help Adam straighten out his leg. Adam is scheduled to be in Boston recovering for the rest of the week. We will give updates when we hear.

Thanksgiving

2009-11-26T21:59:00.004-05:00

Like everyone else today, we have much to be thankful for. We have spent the day with many family members; just being together, chatting, eating entirely too much, and feeling grateful. I love all my children, I love my husband, I love my parents, and I love his parents. By the grace of God, I was able to spend this day with everyone of the aforementioned family members (plus a lot of other really wonderful ones as well).

Our road to recovery is long. I had no idea in fact how long, but I am starting to learn. For today, I am so grateful. I have been given one of life's greatest gifts. That of raising Adam James. He remains on the earth to be part of our HUGE family. Life just doesn't get any better.

11/18/09 Update

2009-11-18T09:10:00.003-05:00

Adam paid his first visit to Shriners in Boston yesterday since returning home. It was only a day trip so he made it home last evening. Adam was met by many of the wonderful people that take such good care of him. He got picked up and dropped off at the airport by the Shrine Van; was evaluated by the surgeons, nurses, therapists etc.; ate chicken nuggets at the cafeteria; spent some time visiting certain people; and ended his visit with his physical/occupational therapists. Adam walked out the door with the following:

1) New hand splints
2) New leg/feet splints (no more wearing his shoes and knee splint)
3) New bandages, cica gels, 2 x 2s, co-wrap, co-band, etc...
4) A reminder of Adam's return visit on November 30
5) A reminder of Adam's probably reconstructive surgery on December 1
6) And a smile to have left Shriners (he really didn't like everyone messing with him again)

Adam's toes continue to be a problem and he is scheduled to have reconstructive surgery for his toes on December 1. The surgeons will place a rod in Adam's right big toe to straighten it out. This toe is the one that has been curling under the most of all of his toes. Adam has another visit scheduled with Shriners on November 30 to determine whether surgery is needed (which they will do the next day). We think the toe will remain curled the next couple weeks so surgery will be needed. Adam will need to remain at Shriners for a few days after surgery for recovery. Two weeks after the surgery, Adam will need to return to Shriners to remove the rod from his toe. The dates of the surgery may change from Nov. 30/Dec. 1 to Dec. 7/Dec. 8 based on some scheduling issues. We will find out later this week what days Adam will head back to Shriners.

These reconstructive surgeries are all part of the healing process and are expected. It is the next phase of Adam's recovery and should continue throughout his life as he grows. We are grateful that the excellent medical professionals at Shriners are continuing Adam aggressive recovery plan and for JetBlue for giving us these free travel passes. Thank you as they have really assisted Adam with his great recovery and assisted us with our travel to and from Boston.

Since we have been home, we have received lots of questions from people. If anyone has any questions, feel free to post questions in the comments and we will try to answer them.

Progress

2009-11-13T17:36:00.001-05:00

Adam has been doing well since arriving home. He has made great
progress. The last couple days he has been able to feed himself most
of his meals. Here he is eating oranges.

11/3/09 Update

2009-11-03T11:59:00.003-05:00

We have been home now for a few days and Adam seems to have fallen right back into place where he was at home 3 months ago. He enjoys playing with his toys, playing with his siblings, and sleeping in his own crib. We are still adjusting to the new circumstances at home and have created a "caring corner" in Adam's room for all of his new supplies (bandages, wrap, tape, etc...).

Today starts Adam's first physical/occupational therapy sessions (he will go twice a week for PT and OT sessions back to back). Adam visits his pediatrician tomorrow for the first time since the accident. He seems to be doing really well with these new adjustments. He is a such a happy and strong child.

Adam was very excited to see his siblings in Boston and has enjoyed playing with them at home. This week, Adam is missing his siblings as they are having fun at Disney with their grandparents, aunt, uncle, and cousins (school holiday this week). We didn't know if Adam would be home for this trip so only the other children went (special thanks to all of you at Disney taking care of our children). We ended up arriving home prior to the trip but decided to stay home as it has been a busy week for him as he is visiting his new therapists and doctors.

Breakfast

2009-11-01T05:39:00.000-05:00

As you can see, Adam hasn't missed a beat--he got right back in his
highchair for breakfast this morning (he got up early and doesn't
understand daylight savings time).

Out to trick or treat

2009-10-31T20:06:00.002-04:00

Greeted by balloons and yellow ribbons on trees

2009-10-31T18:27:00.001-04:00

We are home

2009-10-31T18:23:00.000-04:00

He is ready to come home

2009-10-31T15:36:00.000-04:00

On plane

2009-10-31T15:34:00.001-04:00

This day is finally here - we are jetting home

2009-10-31T15:07:00.000-04:00

Big sister helping

2009-10-31T15:05:00.000-04:00

Horsing around at airport

2009-10-31T15:04:00.000-04:00

On the Charles River

2009-10-31T12:08:00.000-04:00

On the duck

2009-10-31T10:55:00.000-04:00

The Duck

2009-10-31T10:42:00.000-04:00

Harry Potter -The giant knight

2009-10-31T10:35:00.001-04:00

The Kids

2009-10-30T22:59:00.002-04:00

We had a great day today for out last full day in Beantown. Catherine
and the kids arrived without a problem. They got picked up from the
airport from the Shrine Ride--volunteer Shriners have been taking us
back and forth from the airport in the Shriner's van saving us lots of
money on taxi and T fares.

After a joyous reunion with their brother, our kids followed us to see
the Ducklings. We had a delicious lunch at Figs on Charles Street
(anyone been there? Yummy flatbread pizza).

We then changed into Halloween costumes for the big Halloween party at
Shriners. We first went trick or treating around the hospital and then
had a great party in the cafeteria. We ate sugar donuts and candy
apples. We drank apple cider. We played games--such as pin the tail on
the cat and guess how many candy corns are in the container (Ethan's
guess was the closest in our family but we didn't win. Ethan wrote
"100 and 50"). We decorated trick or treat bags and took pictures
with some great friends. We said goodbye to the great friends but only
for a short time--Adam has his first follow up visit on November 17.
So, we will be seeing these great people then.

After the party, Adam and the adults took naps because we were quite
tired. We woke up to the other kids playing "go fish" with cards
from trick or treating and quite the pile of candy wrappers.

We then visited Faneuil Hall, the harbor, dad's office, and a few
shops. We stopped by the hospital again tonight to say goodbye to some
great people we didn't see earlier.

We then cleaned up and started packing for our trip home tomorrow.
Here is a picture of the kids sleep over. The boys were asleep in
minutes. Caroline was a hold out to enjoy sometime 2 on 1 time with
her parents.

We are hoping to do the Duck Tour tomorrow in the morning. Of course,
we will be celebrating Ethan's birthday throughout the whole day. The
meal of his choice is Subway--can't go wrong with that.

Catherine summed up the day perfectly--"With us all being together, I
finally feel like our family is complete again."

More ducklings

2009-10-30T12:50:00.000-04:00

What time of year is it?

2009-10-29T20:39:00.003-04:00

Are we sure it is just before Halloween? The mood around the Faust house is a definite Christmas Eve feeling. These three kids are giddy. There is a contagious excitement in the air and every so often I hear one of them say, "I just can't wait to go see Adam." Or, "is it cold in Boston?" And my personal favorite, "no more trips without us!!!"

The pre Noel atmosphere is also felt because the last two weeks have flown and dragged all at once. Our kids had another week with their Nana and Papa. I knew my kids were completely at ease with their grandparents and the transition from grandparents back to parent was seamless when they were calling me Nana while I was back last weekend. What a blessing it is to live so close to family. This last week my oldest sister Elizabeth was here with our kids. It was very appropriate Elizabeth stepped in to tend to my children because as the oldest of the Jones children, she has taken care of me (the youngest) my whole life. She told my kids all sorts of stories about years gone past including what a bad driver I was at age 16 (they loved that one).

As for now, this is the last night we will be under two roofs as a family hopefully for a while. Tomorrow morning, myself and our three older children will make our way to Boston to reunite with Adam and John. Then we will be together again, finally and at last. I think this will be a reunion to be remembered.

Going Away Party

2009-10-27T15:41:00.002-04:00

Bittersweet doesn't begin to describe our day yesterday. Imagine a group of people. Trained professionals, who for their life's pursuit, take care of burned children. A child arrives at their work and the parents can not take care of him. In our case, we couldn't even touch Adam. When he slept for days and days, they changed his dressings, diapers, and tended his wounds. When he started waking feeling anxious and panicked, they spoke soothing gentle words to him. When he started waking even more, he really turned up his volume and they would rock him, feed him, sing to him, and act silly to try and get him to smile. They cuddle him, try teaching him to walk again, try for hi-fives, and cheer on his every success. During all this, these same people took care of John and I. Answered every last question (many of which we repeated many times), spoke to us kindly, always loved our child and alleviated any concern we had. No biological relation, just good hearts. Yesterday, Adam had a going away party. He got chocolate cake, presents, and a room full of people who love him. Our entire family's life is richer for our time spent at Shriners. I love these people.

We are local for a few days just to make sure we can properly see to Adam's needs. Last night John and I took care of Adam on our own for the first time. I'll spare you the comical/painful details, but suffice it to say is it was not nearly as seamless as when these trained professionals did it day after day and night after night. I now appreciate these Shriners more than ever.

His new duds

2009-10-26T12:55:00.000-04:00

October 25, 2009

2009-10-25T23:15:00.003-04:00

Adam is doing great and has had a great weekend. He is really turned back into himself emotionally (happy and smiley). Physically, he has issues--he still cannot crawl or walk because he doesn't want to put weight on his hands or toes (because they are still healing). He really doesn't like to grab items with his hands either. This means he sits, likes to be held, and rides in his stroller. Hopefully when Adam gets home, his siblings will help Adam to chase them.

We not been posting this weekend because Adam is so back to normal that we have been playing with him and taking care of him. The nurses have turned over his care to us at the hospital. Of course, they are there available to help us when needed but we are taking care of him. But, someone said "a picture is worth a thousand words." Today, we posted 25+ pictures which means 25,000+ words:)

Tomorrow begins the "at home experience" when Adam will move to the apartment. We are still on track to all (including Adam) go home on Halloween for good. We can't wait. We were told that Adam is ready to go home now and the only reason why Adam would not go home is if Catherine and I don't feel ready to leave and take care of him at home. We feel ready to head home:) It will be a great "treat."

A great day

2009-10-25T20:17:00.003-04:00

Asleep by 8pm, the end to a great day. BTW--the dark stain on Adam's shirt and pants is not blood. It is silver nitrate that is used to treat the grafted skin. Adam used to get soaked with it while his grafts were healing. It stains and gets all over the place. But it works well.

That face

2009-10-25T18:58:00.000-04:00

His face didn't get as dirty from dinner as I had thought. But I can
stop posting pictures of the smiling face.

Playing with food

2009-10-25T18:56:00.000-04:00

Adam really enjoyed eating and playing with his dinner--spaghetti,
meatballs, and mash potatoes.

He wanted out

2009-10-25T17:34:00.000-04:00

So we hugged as we walked along the Charles

Walking along the River

2009-10-25T17:26:00.000-04:00

Walking along the Charles River win MGH and Shriners in the background

Watching the sail boats

2009-10-25T17:24:00.000-04:00

Strolling over a bridge

2009-10-25T17:21:00.001-04:00

My daddy's favorite store

2009-10-25T16:56:00.000-04:00

Thanks IPhone for letting us post these pictures while we walk.

My mommy's new favorite store

2009-10-25T16:42:00.000-04:00

A visit to see Mr. Washington

2009-10-25T16:10:00.000-04:00

Fall foilage

2009-10-25T16:04:00.001-04:00

By the lagoon

2009-10-25T16:01:00.001-04:00

"Make way for Adam"

2009-10-25T15:58:00.000-04:00

He will be crawling and walking in no time (we hope).

On a walk

2009-10-25T15:40:00.000-04:00

VIDEO: He said "dadda"

2009-10-25T12:09:00.000-04:00

Watch this video and he says "dadda" for sure. I do have to disclose
that Adam's first word after waking was "momma.".

Gnawing on a carrot

2009-10-25T12:06:00.000-04:00

VIDEO: Hello?

2009-10-25T12:03:00.000-04:00

Did Adam just say "hello?" Watch the video and let me know what you
think.

Wash it all down

2009-10-25T11:59:00.000-04:00

Adam washed his lunch down with apple juice.

Our little muffin man

2009-10-25T11:58:00.000-04:00

As you can see, Adam enjoyed his blueberry muffin.

We must be leaving soon

2009-10-25T11:49:00.001-04:00

We must be leaving soon because Adam got chips with his lunch (a first).

Gobbling up a hotdog

2009-10-25T11:45:00.000-04:00

Adam loves his banana

2009-10-25T11:43:00.000-04:00

Cute smile

2009-10-25T11:20:00.000-04:00

As you can see, Adam is getting back to himself.

October 22, 2009

2009-10-22T23:15:00.002-04:00

Adam had another good day full of physical therapy, lots of yummy food, and a trip to the Boston Commons. He didn't enjoy physical therapy as much as he enjoyed his peanut and jelly sandwich for lunch and his trip to the park. But, physical therapy is a daily necessity for Adam's recovery (and will be for a really long time).

We had a choice and tender few moments tonight when Adam was back to himself full of smiles and laughter. With Adam in his go-kart and his parents sitting on both sides of him, Adam just looked at us and smiled and laughed and smiled and laughed. He even started grabbing his daddy's fingers (he doesn't like to grab anything in physical therapy). It was one of those moments when Adam was finally back to himself. We will never forget it and it really gave us a boost of hope and endurance.

We are still on track to be discharged locally from the hospital next week with a few days doing the "normal life" experiment in the apartment. And, we are still scheduled to bring Adam home for good on Halloween. We hope the schedule stays on track.

Outing

2009-10-21T21:58:00.006-04:00

What a day! One of our beloved nurses said to me today, "do you want to take Adam for a walk?" You mean around the 8th floor hallways where we have circled countless times because that is the only place his infections have permitted us to go? "No, really outside. If we sign some forms and lend you a stroller, you can actually leave the hospital for a walk."

Walking out the Shriner front doors, pushing my boy, I got teary eyed. This sweet little baby had not left these four walls for 2.5 months. Hooray!! Who knew life could be so sweet. We made our way up to Cambridge street and I was sure to be the proudest mother Boston had ever seen. I wanted to climb up on the roof tops and tell the world-WE'RE OUT!

We made our way to John's office where Dad and baby were happy to be reunited.

We then continued onto the Harbor to visit the sea lions out in front of the Aquarium.

And finally we walked home via the North End.

These months have been just what I imagined fall in New England to be, perfectly lovely. I am glad Adam could finally enjoy it with us.

New friend

2009-10-21T00:24:00.000-04:00

We found a new friend on our trip to the play area.

October 20, 2009

2009-10-20T22:53:00.004-04:00

What happens after two-a-days of PT

10/19 update

2009-10-19T23:11:00.002-04:00

Adam had a good day today. He started the day off with a healthy appetite--he ate a whole scrambled egg, some bacon, and a french toast stick. He did well for lunch and dinner as well. He had a couple hours of PT today and doesn't have that high pitch screen anymore when the physical therapist bends his fingers and toes. Adam feet fit perfectly into a pair Andrew's old shoes today. These will help keep Adam's toes in the correct position and will assist with Adam's walking.

We continue to learn various tasks/exercises from the physical therapist that we will use at home. When Adam comes home, he will be wearing his compression garments and we will need to wrap his little fingers. He will be wearing splints at night in various locations, such as his hands, elbows, and his feet.

Adam is eyes wide open and ready to return to life. We will be excited to move him to the apartment next Monday.

10/18 update

2009-10-18T13:02:00.002-04:00

Adam has had a rough couple of days recovering from his surgery without being sedated (as he was for prior surgeries). However, he is doing well considering the circumstances. He didn't have much hunger yesterday (just pain and discomfort). But, this morning he ate some pancakes and juice. We are hoping his grafts and donor site heal well this week. If everything heals well, we will be discharged from Adam's hospital room and all move to the apartment as a test run on Monday, Oct. 26th. This will give us a chance to try to live our lives in Bostom with Adam outside of his hospital room but still be close to doctors, nurses, PT, etc... in case we run into any problems. After a week or so of spending time in the apartment with Adam, Adam will be discharged from Shriners for now and will be able to go home. There is a chance that we (including Adam) will all go home to Virginia on Halloween (a couple weeks ahead of schedule--2 1/2 months instead of 3 months). Our kids are coming to see Adam on Oct. 30-31 and we are hoping we can all go home for good on Oct. 31. We will have to see how his grafts and donor sites heal and how his compression garments and PT are going. We are hoping for a great "Treat" on Halloween--we can all go home with Adam.

10/16 10:30am update

2009-10-16T10:49:00.000-04:00

Adam is out of surgery and did well. The surgeon harvested skin from
top of the back of his right leg and grafted small areas on his right
bicep, right hand, and left thigh. Adam is sleeping now. We are told
that the surgery will not affect his weaning--Adam received his last
dose of his sedation medication today and will receive his last dose
of morphine tomorrow morning. He may receive additional doses the next
week as he recovers to manage pain.

Adam is connected to probes and tubes again but those should be
removed later this afternoon. Then he will be free to cruise the
hospital in his go kart.

We are so proud of our cute Adam. He has been so strong and patient
through all of this. We certainly love this kid.

Friday October 16, 2009

2009-10-16T08:53:00.005-04:00

Adam did a much better job eating yesterday and seems to becoming more and more himself every day. I finally realized he was thirsty so we made him a milk shake and he guzzled it right down. Hooray!! He wore shoes for the first time and practiced walking in them. It was not easy but he powered through. YEA!!! Adam is in surgery right now and we will give a report as soon as we have one.

Aunt Julie and cousins Easton, Allie, Meredith, and Graham all arrived from Phoenix last Sunday. They have been tending the homestead while we stay with Adam this week. Of all the family members and loved ones who have been watching over and caring for our children, my kids may have been most excited about these visitors for one reason: COUSINS COUSINS COUSINS!!! Amazingly, the reality has exceeded the expectation. What with making Halloween cookies, playing Vidal Sassoon Salon where cousin/stylist Allie flat irons your hair, and getting out of school half day early on Friday, I would say having the Jones cousins visit has been a fiesta 24/7. We appreciate the Jones coming from so far and taking care of the Faust kiddies.

The Jones don't just bring the fun. Julie is teaching her kids to have a social conscience as well. They enlisted the help of their elementary school friends and collected hundreds and hundreds of pop tops to donate to Shriners. Shriners collects these (the only part of the can that is actual aluminum and quite valuable) then recycles them for cash. Thanks Jones and thanks Hopi!

10/15 9am update

2009-10-15T09:58:00.003-04:00

Adam had a restful night and only woke up once in the night. He has been taking his medication well. Adam's eating has not improved much. Also, he has some small areas that have opened back up that will require another surgery to close them up. We understand this is a normal occurrence. The surgery will probably be tomorrow morning.

From the Hands of Babes...

2009-10-14T20:08:00.005-04:00

Adam and I took a little outdoor stroll this afternoon on the deck of Shriners. He did it over the weekend with Aunt Elise for the first time and we tried again today. We are enjoying New England in the fall.

I am not sure this kid is mine. For starters, all my kids look exactly like John. Each time I see one of my new borns, I look at the baby and think to myself, "I have seen this kid before." There is no mistaking who their father is. Second of all, I offered this kid everything and anything imaginable today for food, and he turned every last bit of it down. Buttery mashed potatoes-no thanks, cheese burger-took the bite off my fork and spit it right back out, syrup covered pancakes, I got the old toddler "raspberry" trick. I tried Oreos, strawberry milk, chicken breast, buttered bread, and all I got was a vehement shake of the head back and forth many times. Where does he come from?? When I was hitting my frustration thresh hold limit, I remember he gets poked and prodded all day long to perform tasks in which he has no interest. He is pushed to do things like put weight on his feet or straighten out his fingers which are REALLY painful for him. Every simple task that the usual 16 month old child would excitedly engage in, is extra hard for him.

I was reminded of this tonight. While I was trying to feed him bites of banana, I left the remaining banana still in the peel on his high chair tray. He eyed that banana for a good while before very tentatively raising his injured little hands and pushing that banana back and forth on his tray. He wants to move forward too. It just has to be one step at a time. Thanks for the reminder Adam.

10/13 Update

2009-10-13T23:59:00.003-04:00

Adam had a so-so day today. The good news is that his feeding tube came out this afternoon. During PT, he was getting worked up (as expected) and the tube kept coming out until it was too late. So, the good news is that he doesn't have any tubes connected to him anymore. The bad news is that he needs to increase his eating so the feeding tube doesn't have to be put back in. He ate more food today (he liked his pizza) and we are hoping he will have more hunger now that his feedings by the tube don't happen at night. We are shooting for 900 calories per day with lots of protein. If he is not getting the nutrition he needs, his skin will start to breakdown and he will have to go back on the feeding tube.

More bad news is that he continues to be itchy at times. His legs were itchy last night and they have some blisters on them today. The doctors and nurses are giving him a different medication tonight which should help him get through it.

Some good news is that Adam is turning more into himself. He can communicate with us through gestures and funny faces like he did prior to the accident. For example, this afternoon he was getting tired of staying in his room so he got fussy and kept looking out the windows into the hallway. Once Adam got out in the hallway in his go kart, he was quite happy. We spent 1 1/2 hours this afternoon driving around the hallways on our floor.

Some more good news is that Adam is doing well with PT. We have been working on helping him walk and he did very well today. One of us will help him support his body while he gets up on all fours and takes steps. The physical therapist will then help place his feet under his body so he can take the right steps. With our assistance, Adam walked the length of a floor mat (6 feet) several times today.

Today we picked the colors for Adam's pressure garments. We only had a handful of colors to choose from and we picked baby blue and royal blue. We were hoping to find a color that would blend in more with his skin color, but they didn't have a color that would be just right. So, we picked the blues since he looks so great in those colors (these are the colors of his temporary garments). Catherine is hoping these colors are dark enough to hide the dirt and mess that comes with wearing the same outfit everyday for 23 hours for 12-18 months. Since Adam is a growing boy, he will get measured again in about 3 months for another two sets of clothing. If we don't like the blue colors, we can try a different color in 3 months.

We will try to post a picture of Adam's face now that he doesn't have anything connected to his body. Tomorrow, we are hoping for a hungry cute boy who will work really hard in PT.

10/12/09 Update

2009-10-12T23:05:00.002-04:00

Adam had a rough morning with some discomfort. He seems to be really itchy as well. It has been a few days since he has been so itchy. He never seemed to quite settle down this morning. We are not certain whether if teething and/or withdrawal were the causes--probably both. Adam did get tylenol and orajel for his teeth and seemed to do better after that.

He didn't eat much today (perhaps because his gums are hurting). In fact, for dinner he would rather bite the styroform tray than the chicken breast or oreos.

Adam is becoming more and more awake and aware. He still says "Momma" and "Dadda" and can shake his head "no" when he doesn't want something. He is progressing with physical therapy and his wean is going on schedule. He needs to continue to eat more food so the feeding tube can be removed.

Today was one of those more difficult days. Let's hope tomorrow brings a better day.

October 11, 2009

2009-10-11T20:21:00.002-04:00

Adam seems to be doing well this weekend. The past two days Adam has been able to go outside on the deck to play and he really seems to like it (first time he has been outside since the accident 8 weeks ago). He seems to have more of an appetite and energy after he goes outside. He was able to hold his bottle today (something he was very good at before). He also enjoyed playing with bubbles. Adam's aunt is in Boston taking great care of him this weekend. Thank you Aunt Elise!!!

Go Sox

2009-10-09T22:19:00.000-04:00

Adam was all ready for the Red Sox game tonight with his new Sox gear
he received (thank you for Wally) but the game started after his
bedtime.

10/9 6:30pm update

2009-10-09T18:57:00.002-04:00

Adam and I had a great afternoon. We went for a stroll in the go-kart around the floor. Adam really liked his chicken breast, mash potatoes, and chocolate pudding for dinner. He has settled in for the night.

10/9 1pm update

2009-10-09T13:17:00.002-04:00

Adam has had a good morning. He slept in a little bit by waking up around 7:15am. He didn't eat much of his pancakes and yogurt. Adam went to the gym this morning for PT. He played (looked at) many toys (mostly whimpering and crying through them because it hurts) and practiced walking from the physical therapist to me. The physical therapy really got him tired. He didn't eat much of his grilled cheese and fries (but he did finish his apple juice) before taking a nap. Adam had another PT session this afternoon in his room where the physical therapist works his joints and wraps him in his splits. Here is a photo of the splints he is wearing. Some of them are new (foot splints don't go so high) and some are hold. Here is another photo of Adam sleeping in his bed with his splints on. You can also notice his pressure clothing--these are the temporary ones but he got pants yesterday. With his new tight pants and new foot splints, it looks like his ready to go ice-skating. Adam continues to do well and is becoming more awake. We hope to have a great afternoon together.

10/8 7pm update

2009-10-08T21:11:00.001-04:00

We have been taking hundreds of photos of Adam and we finally got one of his great smile. As you can see, Adam is happy to be "disconnected and free" from all of the tubes and devices he has been connected to for the past 7 weeks. Adam physical therapy twice today (split up the tasks) and got some new foot splints. His feet/toes are not resting in the right place so he got some new splints that will take care of that problem.

Adam has been enjoying his bottle and real food. Today he ate a hot dog, meatballs, mashed potatoes, jello, banana, scrambled eggs, juice, and a peanut butter cookie.

Adam should be finished with one of his antibiotics tomorrow and the other one should be done in the next day or two. His lungs don't appear to be as congested as they were in the past.

Adam really loves playing with the toys, read the books, and watch the DVDs that have been sent. Now that Adam is awake most of the day, all we do is play with him in his room and these gifts have come in real handy.

Catherine and I really have liked the treats and reading your stories and encouragement in the cards and letters that have been sent by caring and good people. Thank you to all of you that have sent cards, toys, books, DVDs, food, etc... (many of them from people we have never met).

Lastly, we need to thank our family and neighbors who have stepped into our roles as parents to three busy children at home while we have been with Adam in Boston. We cannot do it without you. We just cannot do it without you. While we worry about our kids at home, we never have worried about their well-being and safety. They are bring taken care of friends and family who love and treat them as if they were their own children. We are grateful to live by such loving family and friends. We love you and appreciate all you are doing for us.

October 7, 2009

2009-10-07T14:11:00.002-04:00

Adam loves his new digs. He and I rocked early this morning watching the rain out his nice big window, just enjoying a little human touch. Now that he is off the drips/central line gone, and his trach is gone, we can pick him up out of his bed at any given moment. It's complete contentment, I just love it, but man does that kid weigh a ton. He is still medicated enough that he doesn't help to hold his own body up, so it is like picking up a 15 month old toddler (one with considerable thigh real estate) but all dead weight. Just throw in some squats while holding him and you've got yourself a personal trainer. (who needs the gym??)

He had physical therapy this morning. Because he is no longer attached to quite so many wires we were allowed to go to the PT gym. This place was amazing, any child would have loved it. So many contraptions/games/mats/ball pits...in short, everything you could imagine that turns getting your body in working shape again fun. Adam was able to get on all fours and push up on his hands and knees (in crawling position). This is the first time he has put any weight on his hands for 7 weeks. He was clearly in quite a bit of pain, but he muscled through and pushed right up. Then, the therapists put a mirror down on the floor so he would try to push up becuse he would want to look at himself. He loved it (I loved it too). After all his hard work, he was tuckered out. He just rested his head on the mat and fell right asleep. I'd say he deserved nap time.

3 Course Meal

2009-10-06T19:37:00.002-04:00

Tonight Adam got to sit in the high chair (first time since being in the hospital) to eat a 3 course meal. First course was mash potatoes. Second course was strawberry jello. For dessert was graham crackers. He had high calorie fruit punch to wash it all down (he did it through a straw). Quite the 3 course meal (his first real meal in the hospital).

10/6/09 12pm update

2009-10-06T12:12:00.003-04:00

Today is a day to remember. After a really rocky night with not much sleep (really itchy back), Adam has had a wonderful morning. Adam's trach and central lines were removed. The removal of these items from his body has made a tremendous difference in his comfort level. He seems more calm and happy. Also, we are able to hear his cute little kid noises (no words yet). Adam only has two lines coming into/out of his body--the feeding tube and an oxygen in blood sat probe. The later will be removed tomorrow and his feeding tube will come out when he can eat 1500 calories on his own.

More great news is that Adam passed the chew and swallow exam and has been cleared to drink a bottle and eat whatever food he wants. He is drinking a bottle in his mother's arms right now (probably the thing he likes best in the whole wide world). This will really help with his rehab as he burns a lot more calories healing than he takes in. So, he will start having milkshakes, chocolate milk bottles, etc... to get the calories he needs.

Even more great news is that Adam was moved to another room (a non-ICU room) on the same floor. The room is a corner room with three big windows overlooking Boston. We are told by the nurses that the room is the best room in the hospital. The room is very large and is equiped for two patients at once. Since he still has some bacterial, Adam can't share this huge room with another patient. For now, Adam gets to have the best room in hospital all to himself.

Adam has his physical therapy after lunch. We are excited to see him move around without all of the lines connected to his body. We are grateful for the wonderful blessings that have occurred--especially today. He is really getting back to himself. We are also grateful and appreciative of all of the support Adam and our family has been receiving through all of this. Thank you to you all.

October 5, 2009

2009-10-05T14:38:00.002-04:00

Adam is having a great day today. He played this morning with the physical therapists who put did his finger stretches and toe stretches (what I like to call baby yoga). He doesn't like this too much but he is getting better at it. Then they put the splints back on his hands so they stretch out in a different direction. After that, Adam was strapped into some sort of standing contraption. It is to help him learn to put weight back on his legs. He REALLY didn't like that. After that, he got to play on a big yellow cube. He did like this. He really wanted to pull up on this and reach the toys on the top. He couldn't quite get there today but we will keep trying. Since he couldn't pull up himself the therapists helped him up. He was a bit wobbly on his legs, so his little bum was going up and down. Everyone joked he was doing his baby squats.

He is completely weaned off the morphine drip. This is a great thing. He will be off the versed drip tomorrow. This is even greater because this means that soon he will be able to ditch his central line. Again, less wires going in than coming out. He is still being given the oral morphine and atavan (sedative) but those will start to come down during this week at all. It is such a HUGE relief to see him coming off these heavy drugs. He is becoming more and more like himself every day. Still a long way to go in that regard but much better. I can't wait until he is back to lots of smiles all day long. For now, we will just remain grateful for Shriners great medical care and being able to hold him anytime I want.

Sunday October 4, 2009

2009-10-04T12:42:00.003-04:00

Adam is sleeping right now. He has been having a tricky time this weekend. He still has fluid in his lungs, so he gets ‘suctioned’ to clear the path to his lungs. Sometimes, this causes him to throw up. The nurses think this is a combo of withdrawal from the narcotics and gag reflex from the suctioning. One of the times he threw up was so forceful, he forced out his feeding tube. The nurses chuckled and commented again what a strong boy he is. He does everything with gusto. Either way, he has experienced quite a bit of discomfort over the weekend, I’m glad he’s resting now.

I just put my mother in a taxicab en route from Boston to Virginia. She has been staying at our home in VA during this last week (as well as the coming week) taking care of our children while John and I are in Boston. Thanks to the generosity of Adam’s Uncle David, GranAnn was able to hop on a quick weekend flight and check on Adam’s progress.

I think my mother came to Boston because she also wanted to check on her daughter’s progress as well. My mother was the oldest of six children. She then raised seven children of her own. She is the most natural mother I know. It is the thing she loved doing above anything else in life. She held and loved Adam. She did the same to me.

She told me last night, during a late night chat, she was full of “fierce motherly love.” Anyone who knows her knows this to be true. She is fierce and full of mother love all at once. I have a lot of that in me as well, or at least I am trying to. I feel blessed to be the mother of Adam Faust. He was sent to John and I because ours is the home where he has the greatest chance for success. If this is true, then I best get my Ann Jones game face on! I think I am up for the challenge, I was prepared before I knew of the need.

I will close with one of my mother’s nuggets of wisdom she left me with over the weekend. I want to record it so I can always remember the kinds of things she said. During a quiet moment, she turned to me and said, “A life that starts with “I” and “me” will never be a happy life." Too true.

Saturday October 3, 2009

2009-10-03T12:13:00.004-04:00

Adam is having a pretty good morning. He had a PT session where he sat up on his own!! All by himself for a few minutes at a time!!! This is a first for Adam. Usually, he is helped to stay stable by the physical therapists. Today, he did it all by himself. HOORAY!! He was pooped after his workout (I totally get that BTW). Now he is settled in his "go cart" watching as I type.

Adam is more wakeful and alert today than yesterday after his surgery. This surgery was fairly minor, his trach was downsized from a 4mm to 3.5mm. This seems like a terribly minute distinction (I really don't understand the finer nuances of medicine), however it has made one very audible difference. With the smaller trach, you can hear his voice ever so faintly. All this time I thought it was painful to see your child cry, see him cough, see the pain on his face, but not be able to hear it coming through. Now, we can hear him when he cries, coughs, dry heaves, and it's torture. Unfair to hear the pain of your child, and be pretty helpless. I can't scoop him up like I would love to. I now know when he has been crying the past few weeks, he has been screaming. When he coughs, it's a cough that takes all his energy to get out. All that being said, I am still so grateful to hear his voice. When he cries, I can cuddle my face right next to his. I can play nosey-nosey with only a surgical mask as a barrier (sometimes I cheat and push my mask down for more skin to skin contact). I can hold his hand. One step closer to the real Adam emerging.

10/2 7pm update

2009-10-02T21:08:00.002-04:00

Adam did well with his surgery this morning. Today's surgery only had one objective--replace the existing trach with a smaller trach. As with any surgeries, Adam did not like waking up from the surgery but he got better as the day went on. He continues to be weaned from his medication and the goal is be weaned from the meds via the central line by the end of the week. After that, he will receive medication through his feeding tube. Adam continues to be more awake and alert. Adam had a visit from his Grandmother today. We should update the blog later to talk about the visit from Adam's Grandmother.

10/1 11am update

2009-10-01T14:05:00.000-04:00

Adam had a good night and morning. Last night before bedtime, Adam
smiled several times at Catherine and I--his first smiles we have
seen. Quickly after the smiles he got upset--highs and lows. It was
great to see him smile again.

He had physical therapy where we played on the mat for about an hour.
He did really well sitting up. He wasn't as active playing with the
toys today as he was yesterday. After PT, Adam got to sit in the go-
kart (pictured here). Next week Adam will probably get up on his feet
to start the walking process.

We learned this morning Adam may have surgery tomorrow to get a
smaller trach. We understand this is the next step to taking the trach
out.

The morphine and versed continue to be reduced. By the end of the
weekend or early next week Adam could be done with receiving
medication through his central line (directly into his bloodstream)
and will move to getting his medication through his feeding tube. The
wean may take longer depending how much discomfort Adam feels after
tomorrow's surgery. No word on the status of the yeast infection and
bateria.

Today's chest xray shows his lungs are looking better.

September 30, 2009

2009-09-30T12:01:00.003-04:00

Adam had a big morning. He dressings were changed, cleaned (they use warm bath wipes) and creamed, and got fresh sheets. PT came and did his exercises stretching his finger and toe joints. (He really doesn't like that even though the nice therapists speak to him so lovingly). After that, Adam got out of bed onto the play mat again, and had all the nurses, therapists, his mother, and his Nana and Papa (who came up for a day visit) playing with and talking to him. Then he was held by both of his grandparents. First by Nana, then Papa. He nestled right down into his grandparents (especially his Papa), clearly remembering them.

After all that fun and excitement, Adam was worn out. He was ready for a nap. Instead of the regular bed, Adam get's his own throne today. He gets to take a nap in the "go cart." It's like a bed on wheels. When he gets a bit better, he will be able to take rides around the hospital. Right now, he is in the go cart (our other kids will be so jealous), slipping in and out of sleep. These are pictures of Adam in his go cart. He also is wearing his first temporary jobst (pressure garment) on his chest. These are to help with the scarring and healing process. Eventually he will wear these all over his body. All in all, it's a great day in Boston.

Just Relaxing

2009-09-29T11:32:00.000-04:00

You can see from this photo that Adam is just relaxing in bed after
his A.M. care. His A.M. and P.M. cares really tire him out. He has a
sock over his hand that got grafted yesterday. The ninja headband is
only there to keep a probe in place. There is nothing wrong with his
head. In fact, Adam has a nice buzzcut going on his head as his hair
is growing back.

He seems to be less itchy today and his back is healing. There are
some spots on Adam's left leg (grafted last week) that still need
healing and may require further grafting in the future.

The nurses and doctors continue to wean Adam off morphine and versed.
This is the next goal since he is practically covered now. After
weaning, rehab plays a much bigger role.

9/28 7pm update

2009-09-28T20:02:00.001-04:00

Adam did well today in surgery. The surgeon covered the remaining open spots on Adam's right fingers and his lower abdomin (small spot) The skin was harvested from Adam's lower abdomin which is good because his back is really itchy from last week's grafting. The surgeon said Adam is now 98% covered with just a few minor open spots they are going to watch to see if they heal on their own. It is unclear whether Adam will have another grafting surgery.

Adam got a new central line in his right groin area. He kept his same trach.

Adam is waking up more and is sliding around in his crib. I found him sideways in his crib today. He is lying on his back in the crib and just moves around on his back. The nurses are making sure the crib railings stay up because he is moving so much.

9/28 8am update

2009-09-28T08:46:00.000-04:00

Adam continued to have an "itchy" night last night. His night nurse (same one as Friday night) massaged his back all night so he wouldn't be as uncomfortable. Such nice people here. Adam got wheeled into the operating room just a few minutes ago. Adam is supposed to have the remaining open spots autografted and probably a smaller trach. We will post updates when we hear from the nurses or doctors.

9/27 2pm update

2009-09-27T14:47:00.005-04:00

Adam had an OK night and morning. He threw up again showing more signs of withdrawal. Because of these signs, the doctors decided to keep Adam's medications where they are now for now (not wean them anymore) and gave him some new medicine for anxiety and to deal with the withdrawal. The blood tests came back and Adam has a yeast infection and a bacteria. Therefore, he is on 3 antibiotics now. He is becoming more awake and his personality is showing. For example, Adam usually sleeps on his side. When he went to sleep early today, he kept trying to move his body over to sleep on his side. This is the first time he has been awake enough to try to do this. He also has been trying to take off the wrapping on his finger tips and pull out the tubes that are all around him--I would be doing that too!

Adam is still scheduled for surgery tomorrow to finish up the autografting.

Play Time 9/26/09

2009-09-26T21:30:00.002-04:00

John and Adam are in Beantown sans moi this weekend. It's a fine balance. I love coming home to see how Huey, Dewey, and Louie are progressing and thriving with nary a parent in sight: hair combed every day, 100% on spelling test, apple for apple day remembered-all more than their own mother can usually manage (let's not even discuss the homemade chicken noodle soup with homemade rolls-thank you Nana and Papa for taking over seamlessly this last week). The flip side is I fiercely miss the New England contingency of our family. John, knowing how it feels to have your heart split between two cities, sent me some videos tonight. They were all great but this one was my favorite. I really loved it. I think you will too.

PS-Watch for what he does at the very end of the video. When our amazing nurse practitioner saw him doing this she chuckled and said she didn't think he would have any trouble starting to eat solids again. We agreed, saying he didn't get those thighs from a purely liquid diet.

9/26 11:30am update

2009-09-26T12:04:00.000-04:00

Adam had an "itchy night" last night. His donor sites (his back where
the drs took the skin from) are quite itchy as they heal. Since his
medication is decreasing, Adam is more itchy. He often does the "itchy
dance" as we moves around in bed trying to itch his back. The nurses
have been giving him medication (benedryl and claritin) for the itch
and that helps.

Last night, Adam's dear nurse spent hours through the night itching
and rubbing Adam's back so he wouldn't be so uncomfortable. Bless
these great nurses.

Adam had physical therapy again this morning with more bells, bubbles,
and apple sauce. He did very well and the physical therapist will be
back later this afternoon to do some more if he is up to it.

Adam threw up a little bit this morning. He still has lots of
secretions in his throat that cause for suctioning. He threw up right
after being suctioned so the nurses think that had something to do
with it. His stomach is still big meaning he probably has lots of gas
and poop inside. He is getting fiber in his diet and will get
something to help him poop this afternoon if it doesn't come on it's
own.

During his dressing change this morning I took this photos of Adam's
left palm and wrapped fingers You can see how well it is healing.
Unfortunately the pinky is not that easy to see in this picture but it
is looking good.

Adam is resting/sleeping now after his morning workout.

9/25 10pm update

2009-09-25T22:52:00.002-04:00

Adam had a good afternoon and evening. He slept most of the afternoon (after his tiring morning of physical therapy). I helped with his P.M. care tonight. We gave him a bed bath (special warm wipes all over his body), massaged lotion/cream into his grafted skin, changed his dressings, and gave him lots of kisses and hugs. We like dressing changes because the bandages come off and we can see Adam's healing skin. His grafts are looking really good. Adam had some signs of withdrawal this afternoon (dilated pupils and sweating) but he is doing better this evening.

Since Adam's tests are showing Adam may have a yeast infection in his blood, an opthamologist visited Adam tonight to make sure there is no yeast infection in the eyes. Adam had his eyes dilated (he didn't like that part) and it was determined there is no yeast infection in his eyes.

Adam's nurse tonight said that so far Adam's healing has been a casebook example of how healing should occur. He still has a long way to go but Adam is doing well with the world's best care at Shriners and love and support from everyone.

9/25 11am update

2009-09-25T11:26:00.007-04:00

Adam continues to do well. He had his daily physical therapy session (sitting on a mat while eating applesauce and playing with us and toys) this morning and did very well. He was more alert this morning than he was yesterday afternoon. He was able to hold his head up longer and even sit on the ground in between the physical therapist's legs. Just like he has always done, anything he found he tried to put in his mouth. This morning, Adam tried to put a plastic egg and a bell in his mouth. He is unable to grasp these items with his fingers because his fingers haven't healed enough and he is wearing bandages on his hands. However, there are toys that can be put around his wrists (bells and plastic egg) and he tried to put them in his mouth.

Adam continues to get tests for infection. Adam's tests for the past few days have been positive (yes, he has an infection) and no (no, he doesn't have an infection). He has been put on a series antiobiotics as a preventative measure in case he really does have an infection. The positive tests may be blood that is contaminated from the dead skin and not a real infection. The doctors and nurses will continue to monitor this.

Adam is a lot more awake today than he was yesterday. He is similar to a 3 month old baby--he sleeps a fair amount, wakes up and can follow you with his eyes, has a hard time supporting his head and body, and is not able to talk. As they doctors and nurses continue to wean Adam's medication, he is becoming more and more alert.

9/24 5:15pm update

2009-09-24T17:15:00.006-04:00

We had a great afternoon with Adam. He did very well with the speech/swallow specialist. He ate chocolate pudding with the specialist and can eat anything the consistency of pudding. Any ideas?

We had a great time playing with Adam on the mat. Adam sat on the lap of his physical therapist for about 45 minutes. Catherine fed him applesauce and played "Patty Cake" with him. We were able to give him hugs and play with some toys. Adam will have these sessions daily.

Here are some photos of Adam's toes and hand. Also, here is a photo of Adam sitting on the lap of his physical therapist. You can see that he has lots of tubes and cables attached to him. Look how great he looks.

9/24 1pm update

2009-09-24T13:52:00.001-04:00

Adam is doing well and more awake than the previous two days. He is still set to have a speech/swallow evaluation today. Also, Adam will be placed on a mat with some toys to see if he is strong enough to sit up and play. We are pretty excited see how he does with that. Adam is starting to wear bandages and other devices that will put pressure on his skin to cause better healing. These are just the first steps towards the compression/pressure garments he will eventually wear for the year or so. He is definitely starting to turn the corner out of the intensive care stage into the rehab stage--just the beginning of the turn--but turning the corner nonetheless.

Adam continues to grab our faces (like he always does) which is comfort to us. The trach is still in--more for convenience for surgeries--but may be removed or exchanged for a smaller sized trach next week. The medication continues to be weaned--he may graduate from the drips to oral medication this weekend. There little to no signs of withdrawal from the weaning.

Adam continues to be blessed with the best care possible. In fact, he is the only patient on the acute floor of the hospital now. Thanks for all of the love and support. We are all getting through this.

2009-09-23T17:33:00.006-04:00

September 23, 3009

Here we are at Shriners, 5 weeks into this whirlwind. I am sitting right by sweet little Adam, looking over at him as I type. He is dozing away, letting his body become whole again. I have been feeling a bit down lately, as I wonder what exactly a "whole body" will be. I understand all the over reaching broader sentiments. Yes, we will look back at these months and they will have flown by. Yes, we are learning some very important life lessons. Yes, we are all alive and we have the most important things in life. But what about my boy? What about who he was before and who he is now? I wasn't sure I wanted to write of my worries. I don't want Adam to read this later in his life and think his mother ever doubted who he is to become. I realized though, he may worry as well. I wish for him to have a nature such that he will attack life, and any difficulty he encounters, full of heart and strength. But yet, he may be troubled or anxious along the way. What I am learning, is it's ok to worry, even fret a little here and there. As long as I don't let the fears over take me. As long as I keep hope and faith. The good news is I usually carry those in abundance. I hope I will "never allow despair to overcome my spirit." My hope is that Adam will feel the same. "The ending of the book of our lives will exceed the grandest expectations." I believe this is true for Adam James Faust. The best is certainly yet to come. Boy do I love this kid! I am the lucky one that gets to be his mother and share this life with him.

9/23 1:15pm update

2009-09-23T13:26:00.004-04:00

Adam had a very restful night and did well during his A.M. care. The doctors and nurses continued the weaning of the medication and went down on his sedation/amnesia/anxiety drug. Adam seems to be a little more awake today than he was yesterday (he slept a lot of the day yesterday). He is still in and out but he does wake up at times.

This past week, we have been getting more worried about Adam's hands. They were so badly burned (perhaps the worst part of his body) we have been wondering how they will turn out. One doctor who saw his hands today told us that she thought his hands look great. She thinks Adam will have normal movement with his fingers and his hands. He probably won't be able to play the violin or do other activities that require especially fine motor skills with the fingers. However, he should be able to do everything we do in our normal lives (write, type, play sports, etc...). The doctor thought that bones in Adam's fingers looked really good and he probably wasn't going to lose much length on his fingers (perhaps just some tissue on the top of the fingers). The doctors have been telling us that Adam will need extensive physical therapy over the next few years with his hands but early indications are that he should have normal movement with this hands. Even though his hands will not look the same as they did before, he is so young he will adapt well because his new hands will be all he will know.

I think his hands will continue to heal and will turn out just fine. He has done so well so far and has overcome other issues. I think the hands will turn out fine in the end.

We are hoping to take just the right picture of Adam being more alert. When we do, we will post it. Thank you for all of your support and love.

9/22 11:30pm update

2009-09-22T23:58:00.003-04:00

Adam continues to do well. He spent most of the day sleeping and recovering from yesterday's surgery. We held him and read him stories like "Danny and the Dinosaur." Tonight, the doctors re-started the weaning process with the medication. He appears to be tolerating the weaning well. This week, Adam will receive a visit from the speech and swallow specialist who will determine whether Adam is able to eat/drink from a bottle (instead of the feeding tube in his nose) and begin to make some noises (put a plug in the trach). Here are some more photos of the splints Adam has been wearing to make sure his body heals correctly while in bed.

9/21 11:15am update

2009-09-21T11:25:00.007-04:00

I just spoke with the surgeon and Adam did a great job in surgery. He is still getting cleaned up now and won't be done for a little bit. Two long strips of of skin were harvested from Adam's back and bum (meshed skin) and autografted on Adam's left thigh. The surgeon said they had to harvest quite of lot of skin from the back and bum because there is "quite a lot of real estate on those thighs to cover" with skin (he is a good chuncky baby). The surgeon said that Adam will have another surgery next Monday to finish his fingers tips and other small open areas. She thinks after next week's surgery Adam will be able to stand and start walking again (or learn to walk again--he had just started walking a little bit prior to the accident). Such great news.

P.S. Adam's white blood cell test came back last night showing his white blood cell count came down and is looking good now. He will stay on antibiotics for the next few days though as a precaution.

Sunday-Sept. 20, 2009

2009-09-20T10:41:00.002-04:00

I just spoke to the nurse at Shriners and Adam is doing well this morning. While his lungs were getting suctioned, he coughed up some secretions/mucus. They also continue the "baby detox", and as they are doing this he is becoming more and more alert. At times, when he is awake, he is following people around the room, and actually looking people in the eyes. Hearing this, I am pretty anxious to go SEE my boy. I really want to lock eyes with him!! Adam was born with such a sunny disposition, I hope one of his thousand watt smiles is soon to follow.

9/19 noon update

2009-09-19T12:29:00.001-04:00

Adam is doing well this morning. He is dozing in and out. Adam's white blood cell count has increased in the last test showing he is probably fighting an infection. He will have another test this afternoon. Adam is doing well on the weaning/withdrawal. We believe they will continue to the weaning of medication as along as he deals well with the withdrawals.

Home Again Home Again

2009-09-18T16:46:00.002-04:00

Adam is stable for now. This week they have completely taken him off the presidex (a sedation drug). Now they have also started weaning him off the morphine (pain) and versed (sedation/anxiety/amnesia). He had a bit of the "sweats" last night, most likely attributable to withdrawals. It was hard leaving him for the weekend. Now that he opens his eyes so regularly, I hate walking out the door. It is only bearable knowing my other children are on the other end and need me equally as much. Also, I don't think we will both be able to come home together on the weekends any more after this. The hospital wants us to move in bedside next week.

Adam is all set to have surgery this coming Monday. This will be his last major surgery, at which point he will most likely be 95% covered. Any surgeries after that will be "touch ups." His catheter was removed today as well. As the DR said, it's a good thing when wires are coming out instead of going in.

John and I are both home for the weekend. John came yesterday evening and made it to Back to School Night, then I came in this afternoon. It's great to be back with our family. My boys were never as quick to hug me before I was gone so much. It does a mother's heart right. John also mentioned he was the recipient of loads of love from the kids last night as well. Some especially good bed time cuddles lying by the older boys last night all the while discussing bodily smells. Somethings never change.

9/17 5:15pm update

2009-09-17T17:55:00.002-04:00

Adam had a good morning and afternoon. He has been sitting in his booster seat and becoming more awake. The doctors have moved Adam's surgery to Monday of next week. It should be the last of the "big" surgeries with smaller surgeries over the next few months. The fluid on his lungs is going away so the doctors are reducing the medicine for that issue. The weaning of the other medication continues.

Some great news. The doctor told us this morning that the left pinky is looking good If Adam is to lose any part of the pinky, it will only be a little bit of the tip of the finger. Thank you all for your support. It is working.

9/16 7pm update

2009-09-16T19:16:00.000-04:00

Adam is doing well. As you can see from the photo, Adam's room is
turning into a play room now that the bubble/walls are down. He is now
sitting in a booster type chair for parts of the day. He is becoming
more and more awake. The doctors and nurses have weaned Adam off of
one of the three medications and will start on the next one soon. He
settles right in when he is being held. He is making great progress.

Mother and Son-Sept 16, 2009

2009-09-16T09:25:00.004-04:00

Yea Yea Yea!!!!! This was one of the best moments of my life. Really. Truly. It rivaled the day he was born. Maybe even better because I now know his sweet nature and smiley personality. Adam was sleeping peacefully when I walked into his room and all of the sudden my mother's voice popped into my head, "never wake a sleeping baby." Riiiight, sorry mom, that so was not happening. I asked the nurses to unhook him so I could hold him. As soon as the nurses started unhooking all his cords and connections, he started squirming and fussing. He was placed in my arms and he quieted right down. We just cuddled right up to each other. There is no explanation for the mother child bond.

I knew I would feel that instinctive motherly love. I did, in spades. It all felt so completely natural, we picked up right where we left off. Like four minutes, not four weeks, had passed since I last held him. The emotion not anticipated, which I hugely felt, was total relief. Like the weight of the world had been lifted from my shoulders. We don't realize how such experiences build up and weigh us down. A total decompression, everything started just flowing again.

I am so grateful Adam was sent to our family. He will be around, bringing smiles and happiness to all, for many years to come.

9/15 3pm update

2009-09-15T15:41:00.006-04:00

Adam had a really good night and morning in his room without the bubble/walls. He didn't have a fever and is getting the fluid off of his lungs. He continues to be more and more awake. In fact, I was able to hold that cute boy in my arms this morning for over an hour for the first time since the accident. It was a very tender moment when he made the movement that he always makes when I pick him up--he reached to touch and grab my face. Only this time, he reached to my face with his arms and hands in splits and wrapped up. Those of you that know Adam well know that he likes to touch/grab faces. Holding him again was as natural as it could be. I held him in my arms and we watched Baby Einstein. There were difficult moments when I first picked him up because he looked at me and started to cry. Since he has a trach, the air doesn't hit his focal cords so there no sound to the crying. You can only see the discomfort in his face and the tears come from his eyes. After a few seconds of crying and grabbing my face, he quickly settled in with me and was as calm as could be. He stayed that way for the next hour or so.

I was told this morning that there is a line of nurses waiting to hold Adam after his mother and father hold him first. He is such a cute baby boy, I imagine he will be held quite a bit today by everyone.

This afternoon promises to be another special moment when Adam's mother gets to hold him for the first time since the accident. We will report here on that great event.

Splints

2009-09-14T22:46:00.000-04:00

For those of you interested, here is a picture of Adam's custom made
left elbow split. The nurses had to take it off temporarily to give
Adam a test. Adam's physical therapist made this splint (along with
others) especially for Adam's body. He has these custom plastic
splints along his body to make sure his body continues to grow
correctly while laying in bed.

9/14 9:30pm update

2009-09-14T22:02:00.004-04:00

Adam had another great day of surgery. The surgeon was able to cover finish putting autograft on Adam's left leg. The autograft was taken from Adam's scalp and was meshed at a 2:1 ratio. The surgeon said that the autografts that were previously done are looking great. Adam's body is accepting the autografts and they are healing well. Adam's next surgery is schedule for next Tuesday when the surgeon will harvest the skin from Adam's back and finish the areas that still need autografts--part of his right arm and part of his right leg. The surgeon said they won't need much skin from Adam's back to finish up the autografts next week. I asked about the left pinky and the surgeon said he didn't notice anything out of the ordinary on the left hand today but he was focus more on autgrafting the right hand. We will see with time how his left pinky heals.

It is expected that next week's autografts will be the last surgery for the next few weeks. Almost all of Adam's body will be covered with autografts (except for the palms and tips of his fingers). Adam will continue to wake up and continue with physical therapy. We understand the doctors like to see how the autografts are taking after a few weeks of physical therapy before they finish up the small remaining portions of the body that need autograft (kind of like a wear in period).

As you can see from the photo, Adam did such a great job today in surgery that the bubble/walls are gone. This means less than 30% of his body is open (without skin). It is great to be able to put our arms around him, kiss him through the face mask, and just be right next to him. He is waking up more and more and can sense when we are there next to him. Sometimes he gets a little upset in his face that we can't pick him up. The trach is still in so we can hear any sounds from him (the air doesn't hit his focal cords making any sounds) but we can see how he is doing from his facial gestures. Adam is still off the ventilator breathing on his own.

In the next week or so, Catherine or I will be moving into his room full time (including sleeping in his room). Having someone living in the room with Adam will help him with rehab/physical therapy, help him dealing with the anxiety, and be there to hold him, play with him, etc... The doctors and nurses are starting to ween him from his current medication (he will then go down to a lesser class of medication) as his body can handle it. One of thoses medicines is the drug that causes amneasia. Once that happens, he will start to remember us and be able to interact with us.

We are told that we will be able to hold our dear baby Adam tomorrow. We can't wait for that moment. It was 4 weeks exactly tonight that the accident happened. It is just a great miracle that within 4 weeks his body is mostly covered with his own skin, he is breathing on his own, he is awake and able to look around, and no longer needs the bubble/walls. Thank you for all of your support, especially to that wonderful person who mowed our lawn on Saturday while we were gone to soccer games. We don't know who mowed the lawn, but thank you for meeting a need and for your kindness.