update on being home

Well its been a few days since my last post.  I have been enjoying being away from electronics and just spending time with my husband and kids.  we've had a week full of doctor appointments, home nurses and trying to figure out our new normal.   Our pediatrician had not received any information from the mayo clinic so when we came to do a base line check up with him, he had no idea Capri even had surgery.  He was excited to see that she was doing so well though willing to help us with the obstacles she still has to overcome. 

we've had home health nurses occupational therapists, physical therapists, home health delivery people and pretty much any kind of healthcare personal you can think of stop by this week to set up a plan to get her back on track. 

Capri failed her 2nd swallow study so we are still mostly feeding from her tube but letting her try a bottle here and there.  She still has no interest in it which does make me a little anxious for our future.   I think a gtube surgery is probably in our near future but I really am trying to avoid another surgery if at all possible.

Capri decided to pull her feeding tube out on Wednesday while I was putting A and B down for naps.  I called home health to see if anyone could come help me place it but they were all tied up until later that night.  I learned how to do it in December so decided I could just do it by myself.  Well miss C was not about to hold still while I shoved a tube down her nose so I had Ashton hold her head while I tried to place it.  Yes I had my 5 year old be my fill in nurse, don't judge.  I kept hitting the back of her throat and psyched myself out that I was going to stick it into her lungs so  in the end we made an ER trip and waited 3 hours for them to spend 30 seconds to place the tube. This is another reason why putting a gtube in is probably going to be necessary. 

Besides  the medical stuff we have been loving just being able to lay in bed and watch cartoons, making dinner together every night  and having amazing neighbors/friends stop by to check in on us.  It is a wonderful feeling to be home.  Something I have always taken for granted but now I catch myself watching the kids play together realizing just how lucky we are to all be under one roof

 Making kale chips which are surprisingly really good.  A and B loved them.

 Got out the high chair so sis could sit with us at dinner

 

 

 

 

 

 

Enjoying some sweet potatoes. 

luckily her aversion towards food is only when its in a bottle

reunited

I walked out side to throw away the trash as i saw my dads car turn down our street.  I ran to meet them and saw A banging on his window waving frantically.  It has been way to long.  Being away from your children for a month in a half is brutal.  Everyone is home now.  Our family is whole again.

I asked B what she wanted to do today and her response was: well probably just hug you and kiss you a lot.  Fine by me sis!  We played most of the afternoon and visited with my parents and Mikes mother.  Capris nurse came by to change the dressing on her PICC line. A. told him that he was a doctor because only girls were nurses and boys were doctors.  Fail.. we need to talk about this gender equality thing litttle boy.

Capri did great all day. Her oxygen was in the high 90s and she spent most of the day sleeping.  Having the kids run around screaming playing and even fighting is such a calm feeling.  Everything is going to be okay now.  We are home

pulse ox

Last night was quite the night!  We couldnt get Capris oxygen to stay in the 90s despite having her be on 1 1/2 liters of oxygen.  Both our home health nurse and the cfardiologist where concerned that we left the hospital to early and she maybe wasnt ready.  The on call dr called me 4 times throughout the night to check her oxygen and i woke up probably every 15 minutes to make sure she was okay.

This morning as i was playing with her and getting her dressed for the day I noticed her oxygen was at 105.  How is that possible?  After looking more closely i realized that we had been reading the machine wrong this whole time.  We were looking at her heart rate vs her oxygen.  She was sating at 100 with no oxygen on.  I think my brain has finally decided its had enough and left for good.

We spent the rest of the day playing. I went grocery shopping which was a little surreal.  I just kept thinking to myself.. are we really home?  Do we really get to stay home?  I can cook meals and not have my regular "grilled cheese and french fries lunch"  It feels so good to be home i dont even know how to describe it.

A winter storm hit wyoming so A and B where not able to come home today.  Hopefully the roads will open up tommorow and we will be able to have our family together again.