Funny Carson

Our routine in the morning is to get up at 5:45 am and start his meds and bottle and change his diaper, on the weekends we then go back to sleep.  Saturday morning Carson did not even stir during this routine, except when I went to change his diaper.  With out even a blink of the eye or a movement, Carson let out this loud sound, EEEEEEEEEEEEEEEEE.  You know that sound the sound your kid or spouse gives you when they are sleeping and do not want to be bothered.  Carson's sound clearly said, "Leave me the h*ll alone!"  I could do nothing but laugh.  :)

Tent fun

It has been rainy today. We got out the tents to play with, here are some pics of Carson and the kids playing together. Carson is doing better each day, today was a great day, lots of playing and has been wide awake and enjoying the fun.

We talked to the Neurologist today about Carson's increased seizures. He has been having at least 6, what we call Grande Mal seizures, a day. During these seizures, Carson is shaking, holding his breath and turning blue, the duration on each individual seizure is an average of 20 seconds. These seizures wipe him out. Carson's neurologist would like to add a drug called Neurontin, this will help with seizures, nerve pain and his stiffness. Please pray that this is a good drug for Carson and that it works well. We will be starting it tonight.

New Schedule

I have updated the schedule on the side.  

We have decreased his formula and increased his water, he was getting too big too fast.  We have also increased his breathing and shaker vest treatments.

I am always available for questions if you have any....sarahn.bowman@yahoo.com

Still recovering...

We have been taking it as easy as we can the last few weeks.  Carson is getting better but very slowly.  We are still using oxygen every night, it helps us get better sleep, because Carson's O2 saturation does drop down when he sleeps.  We are still on breathing and shaker vest treatments 4 times a day.  Carson had his last doses of antibiotics today...thank goodness because the diarrhea is getting pretty bad (we have been doing a lot of laundry).  Carson is still very cruddy at times and needs suction a lot.  He has been coughing up white mucus, we had a thought that it could be his formula, that is fundoplycation was failing and he was refluxing and aspirating his formula.  With doctors approval we did an experiment, we colored his formula for 24 hours a bright blue.  So if he were refluxing and aspirating, his mucus would have been blue.  Great news!!! his mucus stayed white, his fundo is still in tact and no reflux!

We had family pictures taken yesterday at the Overland Park Arboretum.  It was a bit chilly but all in all a beautiful day.  The pictures will be back in a few weeks and will post them so you can see just how big our little boy is getting.

Thank you for all the thoughts and prayers, please keep them coming, winter is only beginning.  We are of course hoping for a very healthy winter and to stay out of the hospitals and doctors offices until spring (at the earliest).

Love the Bowman's

A touching story.

Past-

If you can remember when Carson was first diagnosed, we had an amazing team who help diagnose Carson.  Now also remember, Children's Mercy is a teaching hospital, so the team consisted of students, interns, attendings and Dr's.  Due to our emotional situation, diagnosis and new life ahead of us, we made some special bonds with the team.  One in particular, Jessica a student (at that time), wrote a very nice thank you to us for letting her be part of our story.  So we were sent home, said good bye to the team and only had a few thoughts of those who helped us and how special they were.  (We also had just a few other things on our minds)

Present-

On Saturday as we were in transit from Olathe Med to Children's Mercy DT, a room and bed was getting ready for Carson.  As the hospital was assigning Carson to a team, a Dr heard that a boy with Menkes was coming in.  That Dr immediately asked if it was Carson, it was!!  Carson was going to be put on a different team, but this Dr said oh no, that boy is mine, I want him on my team.  As I am sure you know where I am going with this....the Dr's name was Jessica.  That is amazing in itself but the story goes on.  

(We knew nothing of the above story)

As Carson, Jeff, Nana and I were walking into Carson's room, a Dr walked in behind us, nothing unusual, but upon second glance we recognized her, Jessica.  With eyes turning red and starting to tear, we shared a hug and a rush of emotions from the past.  As we caught up a little she informed us that she had just asked about Carson the day before...it is amazing how those Drs know.  

Jessica also told us that when we had first met her as a student she was in line to become a surgeon (no where near pediatrics).  It was after she met and helped to diagnose Carson that her life changed completely, she knew then her calling was pediatrics.  She finished schooling for peds and was asked to write an entrance paper when applying for a job at Children's Mercy DT.  Jessica's paper what about Carson and how he changed her life.

As a mom with a special needs son, and a rare disease, I hope that we do change peoples lives.  I know that we do, but to hear about it and to see it, is a whole new level of emotions.   It was great to see Jessica, how successful she is and to work with her again, we knew from the beginning she was an amazing woman.  We will not lose contact this time....

At home

We got home today at about 12, noon.  Carson has not stopped talking since, it is great to hear him just a blabbering away...I can only imagine what he is telling us.

Will give more of an update later. We have got an inspiring and touching story for you!!!!

home ward bound

The doctors agree that Carson needs to go home, all children recover better at home, especially since we have everything at home we need. Carson is going to finish out today and tonight in the hospital and as long as he does not require any more oxygen, they will send us home tomorrow morning. He is still needing 3/4 of a liter of oxygen, everyone is comfortable with Carson going home on oxygen. Will keep you posted.

Just resting

We are still downtown at Mercy. Carson is improving, little by little. His fever is down. He is still on oxygen and is in need of the strong IV antibiotics for another day to a day and half. I am going to do my best to talk them into sending us home, even if he is on oxygen (we have it at home). Carson is no longer coughing up blood, and is breathing much easier. He asthma is under control. It is just a waiting game at this point....

Home from vacation straight to hospital

Well we made it home from vacation, Saturday afternoon. When we got home, Carson started coughing up a little bit of blood. That was all I needed to take him to the hospital again. We went to Olathe Medical ER to start (easier to be transferred to Children's Mercy than walk in).

We checked into Children's Mercy downtown Saturday evening. They are saying right now Carson has 'Complicated Pneumonia' they want to keep him for a few days to do some strong IV antibiotics and get his asthma and breathing under control.

Sunday morning, Carson is still coughing up some blood, and is having a hard time breathing. Carson slept very well last night and most of the morning. He has been on a little bit of oxygen all night and today. We are just hanging tight, trying to relax and getting Carson better so we can take him home.

Will keep you updated as much as possible.

Sick update

The tests results from Thursday are in (some of them) H1N1 came back negative. Blood cultures were clear also. We are still waiting on the stool test to come back. So we thought we were all good to go on vacation.

All was well until Wednesday, Carson woke up with a slight fever, 101. We nursed it and waited for 24 hours hoping it would go away (we talked with the pediatrician also). Thursday he woke up worse, very close to 105, hard time breathing. After talking to our doctor in KC again, we decided to take him to the local ER. There he had more blood tests, his white blood count was up again, to 14. He also had another chest x-ray, came back negative. What the ER Dr, pediatrician and us decided was that the Amoxacillin was just not working. Carson was given another Rocephine shot. We also started him on Prednisone, he has been having asthma attacks. On Friday we went back to the ER for another Rocephine shot, we also got Tylenol with codeine for him (he has been just miserable). He of course is wiped now and we will get home tomorrow just fine. We will see how he is tomorrow and go from there, if we need to check in with the pediatrician or go to Children's mercy or are fine and will stay home.

Please keep up all the prayers, we can use as many as possible at this point. It is too early in the winter season to be having these health issues.