Monday, August 18, 2008

In the Last Week

Emma has been doing ok since she was discharged last week. Unfortunately, she has come down with pneumonia but seems to be responding well to the antibiotics. The good news is that she has been able to stay at home while she's recovering. She has had 3 doctors appointments that had all led to the same conclusion; she probably doesn't need her trach anymore. So in a couple of weeks, provided she gets and stays healthy, we will head back into the hospital to attempt decanulation (getting her trach out). Please pray for us as we are very nervous and cautiously excited. Pray for Emma's lungs to heal, and trachea strength to keep her airway open as well as her ability to breathe safely without the trach tube. We will send updates as we get them.

Sunday, August 10, 2008

Happy Belated Birthday Daddy...We're Home

Dear Daddy,
This year I wanted to give you a special birthday gift, but I was in the hospital. I worked very hard to get better quickly so I could come home to you as soon as my Doctor's would let me. So today I am sleeping in my own comfy bed in our house. I made you a banner when I was in the hospital and I hope we can really celebrate your special day now that I am home.
I love you so much and I am glad you are my Daddy.
Happy 35th Birthday!
Love, Emma

Working hard to make it just perfect for Daddy...

Happy Birthday Daddy, this year Emma and her smile (despite all of the procedures she endured) were a very special gift just for Daddy on his actual day.

Saturday, August 09, 2008

On Room Air

As of now Emma has been in the hospital just shy of 2 weeks. Yesterday, Emma had a 3rd bronchoscopy and the Pulmanologist was able to place a shorter non-custom tracheostomy tube instead of her normal customized tube. She was in the PICU for the procedure and did so well she was transferred to the Pediatric floor(where she has been staying) shortly thereafter. Emma has continued to need Oxygen (O2) support to keep her blood-oxygen levels up since the original bronchoscopy on July 28th. Well we are happy to say that Emma has worked hard along with her Nurses, Respiratory Therapists and Doctors to wean off of the O2; and is now on ROOM AIR. This is wonderful because not only is she back to her baseline from when we were admitted but she is also on a standard tracheostomy tube and tolerating it. This is BIG because she IS one step closer to getting her trach out. There is no actual date in site but we are getting there. Praise God for our Little Miracle and how far she has come in such a short time. We are still waiting on the results of the EEG but we may not here the results before we are discharged, as we are tentatively scheduled to be going home tomorrow. We will keep you all posted as we get more information. Thank you all for your prayers and support during this hospital stay and always.

Sunday, August 03, 2008

Emma's EEG

Emma is happy and is acting more like herself despite being in the midst of a 24 hour EEG test. She is currently hooked up to about 25 electrodes to record the electrical activity of her brain. They are working to confirm or deny that she has been having seizures. She has been a real trooper. Yesterday she had very few desats of her oxygen levels, while the previous several days she was having them several times an hour. It is now just a waiting game to see what has been going on.

Emma having the electrodes placed on her head

Emma wearing her "hat"