Home Sweet Home

Just a short note to let all who are interested know that Stephenie and I are home. Thank you Lord!!! She is doing OK and getting better with each passing day.
Thank you for your prayers.

Gram's 90th

Last week Mark and I took Beth, Sarah, Zech and Mischelle,Mark's younger sister, to California. We met with our two older children in Redding. Mark's grandmother, Gram, was having a surprise birthday party. She turned 90 this past Wednesday.

We met Jhontiel's boyfriend, Robert, and had a chance to get to know Courtney, Mark II's girlfriend, better.

We also met up with Mischell's dad and oldest daughter. It was such an honor to meet John, Mark refers to him as Dad.

What a completely wonderful time we had. On Sunday we made a blitz trip to Sacramento to visit with friends we haven't seen in way tooooo long. It was such a blessing to see every one's beautiful families. We met up at Wonderful Chinese Restaurant in Citrus Heights. I miss Wonderful's but not as much as I miss all our friends.

We headed for home Monday after lunch at Leatherby's. Leatherby's is a family owned and run creamery...ICE CREAM...we had banana splits and hot fudge sundays for lunch. Then we headed out of town by way of Gateway Community Church (although it is called something else now) the church we got married in. The kids liked seeing it.

By the time we finished saying goodbye to family and sightseeing it was sometime around 2 o'clock. We made it home safe and sound, but very tired on Tuesday morning around 6 o'clock, I think.

As soon as I am able I will get some pictures posted for you all to see.

11 teeth pulled

Stephenie had oral surgery on Wednesday at Valley Hospital. She had 11 teeth pulled under anesthesia. She then had problems keeping her airway open and she ended up in intensive care at Sacred Heart Hospital. We are still here waiting to see if the pain is under control enough to go home later.

When she was at Valley Hospital Stephe was coded. This means that she stopped breathing and the whole team of people came in to try to get her breathing again. There came a point where they wanted to intubate her (put her on a machine to do her breathing for her). I could not get a hold of Mark to talk to him about this decision...possibly the worst minutes of my life to date...so I decided not intubate her. They were able to get her airway cleared and then through a whole other set of circumstances we ended up at Sacred Heart because Valley does not have a pediatric intensive care unit.

Stephenie is basically ok now. Her mouth is still tramatised but healing nicely. We are working on pain control. We may be home as early as tonight but it may just as easily be later than that.

For those of you who know our cell number, I have it with me.

Catching You Up

I took Stephenie to her visit to Shriner's. They follow her scoliosis and like to see her every 2 - 3 years. I am mentioning this because I believe it will shed some light on her last hospital visit. The scoliosis continues to get more severe. They take x-rays of her back at each visit. Last time we were here they told me her hips were dislocated, slightly. Well, now her right hip is completely out of the joint socket. I've been told that when the hip is moving out it is extremely painful. I believe that her hip was on the way out when we were last at the hospital. There is no way of knowing for sure but it is about the only thing that makes sense.
Her right hip seems to be out now too. There have been no x-rays to confirm this, but she had another horrible week at the end of June beginning of July somewhere in there. Then she just got better. No other explanation really. We go to the Dr. tomorrow for her well child check up. Maybe they'll take an x-ray. More for documentation purposes really.
She is not doing very well lately. Her overall alertness and comfort seem to decline daily.

3:45 pm

The doctor has agreed to let us go home. We will be packing up and leaving ASAP. We will also try to keep you informed as we continue on this journey. Thank you for your prayers.

New Pictures

Passover 2009

I was almost prepared, the story of my life, for Passover. I found some lamb at Costco about 3 weeks ago. A friend, Julie, found some matza and so on... We were all prepared to have a nice family Seder together. We still had to remove the leaven for the Feast of Unleavened Bread, but all was on track. Then on Thursday night Stephenie's nurse told us Stephenie's oxygen levels were not staying up.

Normal oxygen levels for Stephe. when she is awake, range from 94 - 98. 100 is perfect and she reaches perfection sometimes when she is asleep and on oxygen. When she is asleep her oxygen levels usually fall into the 80's. On Thursday night her oxygen level was 82 awake and on oxygen. Was made all the phone calls and talked to the Dr. via the nurse. We are now at the hospital trying to figure out what is going on.

Her blood work is fine, other than the low oxygen. She has been swabbed for flu, I did not know one could be swabbed for flu, negative on the flu. She has been checked for other viruses like RSV. All negative. Her lungs have been x-rayed, no pneumonia, lungs clear. They did a cath. to check for a urinary tract infection, UTI, negative, more blood work ...more negative results.

At about 12:45 they finally got her formula up to the room so she is now finally eating. (She usually starts eating about 8:00 am.) She has been sleeping all day long which is not normal and her temp is about 99ish. The doctor has not been in yet so I am not sure what they plan on doing next.

Mark, my sweetheart, brought computer in for me last night. (Thank you Sweetheart!!) So, I should be able to keep you all informed without having to contend with hospital laptops and low batteries.

I am doing just fine and am going to try to add another installment to Stephenie's history for you all later today.

1:40 the Dr. just came in. No new news. All tests are looking fine. She wants us to stay so she can keep an eye on Stephe. She asked me what my take was on staying. I told her that as far as I was concerned they were not doing anything that we couldn't do from home. The doctor wanted to confer with one of Stephenie's other doctors, her lung doctor actually. I'm still waiting to hear what he thinks. 2:25pm.

update

Stephenie is finally getting to be herself again.  She is smiling and awake and seems to be having less pain.  The seizures are back to a manageable amount in any given day.  It has been a long 3 months.  There was a time there that I did not think she would return to her previous state of health.

 I'll post some pictures shortly.

For Emily

Recovery

Stephenie is very slowly getting better.  In the past she has bounced back to her normal self ( in medical terms this is called "base-line").  She is not there yet.  She has been very fussy, which is not normal either.  Nearest I can figure she is having belly pain.  She also has some sort of cold, very stuffy nose with lots of coughing.

Elizabeth is also coughing and complaining of a sore throat.  I think Stephe has what Elizabeth is getting over.  In a house full of CF kids coughs are no small matter, especially when accompanied by fatigue. 

Please pray for us.  Thank you

THANK YOU

I wanted to thank everyone for praying for us.  I also wanted to say a public thank you to Toni, who took my children out for the day.  It helped them get their minds off missing Stephenie and me.  Thank You Toni, they had a wonderful time.  I even have some pictures to share.

The Day Begins

On Top of the World

The Bridge

Having Fun

I Love my Kids!

Sticks and Stones

Home Again!

Stephenie and I have arrived home safely. God bless you. Thank you for praying for us and for all your support.

Teresa 

Home Sweet Home

We are packing up and going home!

Still Waiting

The kidney doctor came in and was pleased with Stephenie's progress. He has no more treatments for her.
We are now waiting for the pediatric hospitalist (doctor at the hospital in charge of pediatric unit) to come assess Stephenie. I am hopeful that she will release Stephenie to go home.
Stephenie is on her normal home routine, but she has been sleeping all day. Stephenie is not fully recovered but I am confident that she can continue recovery at home. We will see if the doctor agrees. If she does we should be able to go home tonight. If not we wait.