Well, I should have written my update sooner. Alli had several good days in a row. She has been making great strides with PT and OT. She was starting to vocalize, roll side to side, and put her hands in her mouth. She had a blue mat in her room that we were using to get down on the floor and play with her. It was so nice to be able to interact with her on her level. We were steadily coming down on the high flow oxygen. We were even starting to discuss rehab again. Then, yesterday after PT she spiked a high fever and her heart rate elevated to over 200. At the time her chest X-ray and labs were clear, however, as of this afternoon, her white blood cell count was elevated and she spiked another fever. So, they are trying to determine the source of her infection. As a result of this, she was put back on bipap this afternoon because she couldn't keep her sats up. They are currently treating her with vancomycin and xosin, which are broad spectrum IV antibiotics.

Prior to all of this, we had a great weekend. My dad was able to catch a ride to Atlanta with my cousin and her daughter. He spent some good quality time with Alli and we celebrated his birthday. It was nice having him here. He always finds a few things to help us with around the house, which is very much appreciated.

Josh is growing like a weed and starting to sleep some longer stretches at night. He is cooing and has started to bring his hands and some toys to his mouth. He engages in great vocal play with my mom...nice to have an SLP in the family :). He is also starting to laugh and has such a great smile. He lightens the mood when things get stressful.

Samantha finished school for the summer. She had a great year and we look forward to what the next year will bring for her. She is making friends in our neighborhood. Her buddy Jack, whom she met at school, I am told is quite smitten with her. He lives around the block from us and they play together a couple of times each week.

We'll keep you posted as things continue to evolve with Alli. Thanks for all of the prayers, love, and support!

Mother's Day

Below is a picture from Mother's Day.  I was able to spend it with all 3 children and my mom.  What a special day!  The nurse's took a nice picture of the 5 of us (Jason, me, Samantha, Alli, and Josh) and put it with a cd of mom inspired tunes.  It was super thoughtful.

Below is a picture of Alli with her bipap mask on.  She looks a little bit like Scuba Steve.  She tolerates the mask pretty well, given that it constantly feels like she is driving with her head out of the window.  The next step from here will be to the high flow oxygen cannula.  The high flow cannula does not provide pressure support.  So, this will be an indication of how she might do without the more aggressive forms of oxygen therapy.  She will do short trials with the cannula and then return to the bipap to gradually increase her ability to tolerate not having the additional support.

 













Alli has been continuing with physical and occupational therapy.  Yesterday they had her on a mat on the floor sitting up with an ace bandage around her stomach to help provide some additional trunk control and support.  This seems to help her be able to focus on moving her arms and head control, instead of having to actively engage all of those things on her own.  She did a really great job!  The last couple of days she has spent a couple of hours in a Kid Kart.  She tolerates this well and looks pretty comfortable.  Yesterday we were able to read some books together.  It was nice having her down on my level so I could more easily show her the pictures and engage with her while reading.

Before Alli was admitted back in February we had her fitted for a Kid Kart, so seeing her in this the past couple of days helped me picture what it might be like to have her in this at home.  Totally doable when the time comes.  My mom has been back in town helping us.  Yesterday she brought Joshua with her and spent some time visiting with Alli.  They read stories and made animal noises - well, mom made animal noises.  She does a great job with the elephant :)  Alli seemed to enjoy it.

After our visit at the hospital, I took Samantha out for an impromptu dinner (followed by ice cream at the Frosty Caboose) with her buddy, Gabriela Elisa, and her mom.  It was a much needed break for both of us.  We had a great time!

The Special Olympics are at Emory this weekend.  So we are thinking about taking Samantha over to watch her friend, Sarah, compete as a unified partner in gymnastics.  Sarah also has a sister with down syndrome and has been a good friend to both Samantha and Alli.  We look forward to cheering her on tomorrow!

on to Step Two...

Alli was extubated today.  Over the course of the past week they have slowly weaned her ventilator settings down to a neutral environment.  The goal was to give her lungs the opportunity to recondition such that they are able to stay open on their own.

She is now on bipap support and they will slowly try to wean this down as well.  The bipap offers additional pressure support to help keep the lungs open, but does not mimic the level of support offered by the breathing tube.  As of right now, she is resting comfortably.  She has good oxygen saturations.  Her heart rate is low, and she is sleeping on and off.

She has a long road ahead of her.  Please keep the prayers coming.

Thanks so much for your support!

Family Time

This past weekend was our first opportunity to be together as a family of five.  Since flu season has passed, they allowed us to bring Samantha and Joshua up to see Alli.  Samantha came for her first visit on Friday afternoon.  She spent some time with the child life specialist before coming in to see Alli.  The child life specialists are people on staff to help explain procedures to patients and to help siblings understand what is happening to their family member.  Samantha enjoys spending time with her.

Saturday I brought both children to the hospital.  The nurses loved seeing Josh and Samantha occupied herself listening to people's hearts with a stethoscope and playing with Alli.  They watched a couple of Wee Sing movies together.  There were several endearing moments when Samantha would put her hand on Alli's arm or leg to comfort her.  She did a great job and asks to come back often.

Unfortunately we missed a family wedding in Chicago over the weekend.  A big congratulations to Rob and Liz.  From what I understand it was a fun weekend!  I was both happy and sad to see the pictures of my cousins and siblings together.  Happy that they were together and having a wonderful time; sad that I was missing out on the fun.  These opportunities are few and far between given that we all live in different states and are in various stages of building our families.

Today I am here with Alli.  Right now she is resting comfortably with a warm weighted blanket.  She has been having some extended periods of alertness and has been exploring with her hands quite a bit.  We love to see her awake and moving around.  The tests results from last week have all come back.  We were hoping that one of them would yield something that could explain why she hasn't been able to handle her previous extubations and would be easily fixed.  As I mentioned, her bronchoscopy revealed that her lungs were heavily reliant on the support provided by the ventilator to stay open.  Her pH probe revealed that she has a mild amount of reflux that is within normal limits.  Reflux can irritate the lungs and cause inflammation.  We can rule this out as contributing to the problem based on the results of the study.  Her MRI shows that she did suffer additional brain damage as a result of the subdural hematoma.  I am meeting with her neurologist on Friday to better understand the findings from the MRI and the potential impact on her future development and seizure activity.  The heart cath revealed that her function is actually better than what they thought.  They didn't need to perform a balloon angioplasty or put in stents to open up any of the arteries.  So, good news becomes bad news.  Ordinarily we would be thrilled that all of these tests came back the way they did (with the exception of the MRI, of course), but all of these positive results mean that the problem is solely with her lungs and her strength to keep them open on her own.  This week they are planning to extubate Alli again.  The process of weaning has been slow and deliberate to give her the opportunity to strengthen her lungs as much as possible.  The tube will likely come out toward the end of the week.  Please pray that everything goes smoothly for her.