Monday, July 18, 2011

Bringing baby home

I had no idea what I was up against when I brought Maaike home.  Thankfully it is doable, but there are definitely some things I wish I had known before.

1. Before you are discharged a nurse and and respritory technician should be scheduled to meet you at home.  They are not coming empty handed.  They will bring at minimum 4 machines and several boxes and about 15 bags of medical supplies.   When you are at the hospital there is a giant supply room where they hind all the stuff you didn't know you where using and many of the machines are built into the walls of the hospital.  So have someone clear out a closet. And take home any bins they offer you at the hospital to organize all that stuff.

2. Take notes. Amazingly you will remember almost everything you have been told about how to care for your child, but for the 10% you don't remember and for teaching other's how to properly care for your child in the future, you are going to want every detail.  On our first night home the RT didn't leave until midnight.  I was exhausted, didn't take notes, and it would take many phone calls to get some simple information.

3. When we were discharged my husband Sid was still back in China with our other two kids so my mother-in-law drove up to follow me home.  I was therefore alone in my car with Maaike in the back seat.  Her pulse-ox alarmed several times and I found myself scrambling for places to pull off on the free-way.  Don't drive home alone.  I could have easily arranged for someone to be in the car with me, but I had no idea how nerve racking it would be.

4.  Don't discharge on a Friday.  It may seem like the best idea, especially if you spouse or family is more available on the weekends to help you get settled into your new life, but the problem is that many services, yes, medical services, are not open on the weekend should you need the help or have a question.

5. Just say "yes".  If someone offers to bring in meals or help watch your other kids or mow you lawn let them do it.  An old neighbor of ours organized friends in a different city to drive up meals to us for 15 days after we got home.  I tried to graciously decline the excessive service, but my dear friend is stubborn and wouldn't have it any other way.  I don't know what I would have done without their generous offering.  We needed every single one of those meals and all the leftovers to make it through that first month.  If no one has offered such help this is the time to speak up and let your stubborn friends know that you are going to need some help and could she/he please take care of it. Just say "yes".

6.  Take time to just be a mom and not your child's nurse.  This amazing advice came to me from another trach mom Somer.  She said, "Remember that Maaike is not as fragile as she may seem.  She is still a baby and will love baby things.  I had a therapist tell me to stop treating Maisy like a patient and start treating her like a baby and it made a huge difference.  I started to remember what my other kids liked at that age and to really play with her instead of just taking care of her."  

7. Take a deep breath and remember this is possible and you can do it!  This can be such an isolating time, but the fact is that you are not the only one who has or will go through this.  After all, I'm here. 

Friday, July 15, 2011

Going to Mecca

The last six weeks felt much, much longer.  I packed.  We moved.  Maaike got RSV.  We tried to unpack and get organized.  We passed Maaike's tracheotomy one year anniversary.  We shopped and tried to reinvent our house.  But mostly we waited.

Our last trip to the hospital confirmed my fears that Maaike's next surgery wasn't years away, but was right around the corner. And though we have been pleased with our local doctors and hospital they have never seen someone like Miss Mike before.  Through emails, research, and phone calls across the ocean we were directed over and over again to one particular doctor in Boston.  As soon as we got the go head, and in less than 24 hours, we collected every scrap of paper, slide, x-ray, and scan of Maaike and sent it off to Boston.

We were told the review would take about two weeks.  At the end of two weeks we could expect a phone call that would tell us if they would take Maaike's case or refer us back to our local doctors.  As usual the two weeks came and went.  We waited and waited some more.

Then finally, last week, they called.  We're in!  When your child has a rare condition you want the best, the very best.  Worshiping in your local shrine is great for everyday needs, but when you are seeking a miracle it is time to pack up and pilgrimage to Mecca.  For now our Mecca is Boston.  Boston here we come.

We will probably be making a couple of trips to Boston this year.  This first trip will be to meet with all the specialists and run some tests.  We are hoping they will take care of her stoma surgery on this trip (to enlarge the hole in her neck for a bigger trach), but her tongue reduction and other treatments will most likely have to wait until the doctors can all confer.

It seems unbelievable that we have a child who's health would necessitate a move around the world and then flights to the other side of the country to get her the proper care she needs.  China is just a distant memory and our day to day life revolves almost completely around Maaike's care, but we are happy.  We are happy to be together, to be back in our house, to be surrounded by people who no only love us, but who drop in, at all hours of the day, without being asked to help.  So while Boston may be our medical Mecca, the location for the Mecca of our lives is right where we are.