Flashback Friday - the Transfer

It's been over six months since Liam's stroke and I still find myself having flashbacks of that night and the days that followed.  I'm not sure how to stop this, so I figured I might as well write about them.

I'll try to be a more consistent writer and will concentrate on these "Flashbacks" on Fridays.

So... when the stroke happened I was at my sister's house, about 90 minutes away from home and way west of Chicago.

I remember on the way to the hospital my sister told me, "if they want to transfer him to Rockford Memorial, don't let them.  Go to Madison."

And then after a few hours in the ER of the local hospital the doctor said we had to transfer to a place with a children's hospital.  She gave me the option of Rockford Memorial, or a hospital near Chicago, since that was closer to where we lived.  (He was stable enough for such a transfer.)

I remember talking to our doctor on the phone and choosing Loyola - mainly because of location and because our doctor said we really couldn't go wrong with any of our choices.

And this is the flashback that keeps occuring.  I thought I was doing really well with processing information and making plans, but for some reason I couldn't figure out how this transfer would work.  I clearly remember my sister saying, "You'll go in the ambulance with Liam, I will drive your van home, take care of Quinn, and Rich and I will drive your van to your house tomorrow with Quinn.  Do you need anything from the house before the ambulance gets here?"

I was so thankful then for her clarity of the situation and have almost constant reminders of this part of the process. 

Caught Off Guard

Yesterday while Liam was with his occupational therapist I was caught off guard when the pediatric physiatrist came to speak with me about him.  I've been meaning to make an appointment with her, but have been waiting 'til all the tests were done.  She oversees the treatment plans and provides her expertise to the therapists working with Liam.  She's certified in physical medicine and rehabilitation, pediatric medicine, pediatric rehabilitation, and neurodevelopmental pediatrics.  She knows her stuff and I was looking forward to having an appointment with her. 

I just wasn't prepared for our appointment and I was a little shocked when she sought me out - but I guess that's how she keeps on top of things. (This place is amazing at keeping on top of things.)

Anyway, she was the first to not be so optimistic about his recovery, especially with his language (aphasia).  He's apparently past the "rapid recovery period" of six weeks post stroke and based on his progress so far this will definitely last past Christmas (this information is important to know for a future post regarding the vaccine).  I had a feeling we'd be in this for the very long haul, I just wasn't ready for a doctor to confirm my thoughts.

She also stressed the importance of forcing him to use his right hand and the right side of his body.  We were really great with this, but after awhile he would just become so frustrated I felt guilty - he has so much frustration with his speech I should at least let him use whatever arm/hand he wants.  Last night we put his immobilizer on him while he was eating dessert - so he had to use his right hand to eat his ice cream bar.  She sighted studies that have shown that forcing stroke patients to use their affected side increased brain connections (shown via functional MRIs) and therefore it will also help with his speech/language.

Liam - with the immobilizer on his left arm, forcing him to eat his pizza with his right (weeks ago).  After about five minutes he asked for me to take it off. 

It was great to meet with her and I'm so thankful for everything that has been done for us and Liam via this rehabilitation hospital.  I would have loved to have known I was going to see her so that I could have prepared myself with questions and with the possibility of not-so-great news. 

Play - So Important

Liam's most favorite person from the hospital came into his room bringing a big smile, some toys, and a great attitude.  She introduced herself as Meg and asked if he would play with her for a bit.  She explained that nothing she was going to do would hurt him at all - she just wanted to play with him.  Her interaction with Liam really made his day (and my day too).  She was able to get more speech out of him than anyone and had him using his right hand.  They played with blocks, playdoh, puzzles, and cars.

Her official position is referred to as a Child Life Specialist. 

As their playtime ended she invited Liam to come on down to the playroom as soon as he was ready to walk.  (We visited later that same day with his physical therapist.)  She also gave him a set of cars, playdoh and a puzzle to take home with him. 

As an early childhood educator I know the importance of play.  I didn't realize how big of a role play would have in Liam's road to recovery that soon after his stroke.  I am still thankful for the time Meg spent with Liam making him feel comfortable and at ease in a very stressful situation. 

I would venture to say that every children's hospital has a playroom.  If you're ever looking for somewhere to donate any extra new toys (after Christmas or a birthday party perhaps) look into your local children's hospital.  I know Loyola is always looking for new toys to help brighten the days of their youngest patients. 

My friend sent me a great NPR article about child life specialists and how important they are to the functioning of a children's hospital.

Obtaining Medical Records

Today I picked up all the records from Liam's hospital stay.  I requested them three days ago and was told it would take 10-14 days to process.  If you need to obtain your personal or your child's medical records in a shorter amount of time than promised (because you have an appointment with another doctor) here are some helpful hints to follow.

1. As soon as you decide you'll be seeking a second opinion or that a follow up with a different doctor is in order contact the medical records office to fill out a release form.
2. After obtaining, completing and faxing in the release form call the office once again and ask to speak with a supervisor.
3. Explain your situation to the supervisor.  (I have always been a big believer in being nice to strangers, especially strangers that are in a position to help you.  It is not that person's personally philosophy that it should take two weeks to get records and that person will most likely respond to kindness and a clear explanation of what you need and when you need it by.)
4. If you need a copy of any tests that were performed you may need to contact another office.  In our case I needed to contact radiology to obtain a CD copy of the MRI images.  The supervisor from medical records was able to supply me with the phone number and also called radiology herself to give them a heads up.
5. Let both offices know that you will be picking up the records and hand-delivering them at your doctor's appointment.  This is much faster than mail.
6. Be sure to bring with a photo ID when picking up the records.

Please don't ask the medical records department to process your request faster than you actually need it.  If everybody who was asking for their records did that I probably wouldn't have been able to get Liam's records so quickly.  However, if you have a second opinion appoinment scheduled and need the records I hope that you find this process as easy as I did. 

I also learned that if you already have a doctor that you've been seeing and he/she wants the medical records their office can request the records.  Since Liam will be a new patient for Lurie's Children Hospital I needed to obtain the records.  Once he is seen by a doctor there they will be able to ask for access to his records with our permission.