The Long Road to Recovery

This little First Aid Kit is what the hospital resorted to last week when everyone realized that Mariah was pretty much petrified of the healthcare workers. I mean EVERYONE! She even screamed when the maintenance people came to empty trash. She screamed when the Food Services delivered her food tray. It was pretty bad. 

         

 It makes me wonder what she endured previous to being home. The nurses quickly called in a Family Life Worker to play with Mariah. Maggie was a gem! I loved her. She was so sweet and patient with Mariah. Maggie was happy to play doctor with this kit. This was also her gift to Mariah.

This picture above was taken the night before surgery. Let's just say she was not a fan of the iv pole. She kept pushing it away! She got a little bit angry. 

Notice the numbers on her monitor? Let me explain. The green 128 is her heart rate and the blue 127 is her pulse. Those numbers are really the same just measured on different areas of her body. The problem is, they want those numbers to be 70-95. If you look closely you'll see pink numbers below the blue 127. That is her blood pressure. Pink is not the color that they wanted to see. She got so angry every time they came to take her vitals that she screamed. She was never sound asleep enough to sleep through it. The nurses tried everything. Nothing worked!The nurse commented to me that they never got a good blood pressure reading. 

Every shift change the nurses asked me if Mariah had high blood pressure. Notice that beautiful blue 100? Well, that was her O2 saturation. It was perfect! She had good oxygen flow......because she was screaming. No need to worry about pneumonia on this kiddo. Many times as the nurses or doctors would leave her room, she would be so sweet and using her sign language and limited verbal skills........she thanked them. They all chuckled! They couldn't help but like her.

Not a great picture of me but I'll take one for the team. Here was Mariah after her sedated testing the Tuesday before surgery. She was a mess. She cried terribly but after a 20 minute nap, she was happy. Jeremy came back from the retail pharmacy there and couldn't believe the difference. 

We also wanted to take a picture with Maggie.This was taken right before her surgery. Maggie was the Family Life Worker who befriended Mariah. Since I was not allowed to walk her into the OR, Maggie offered. I asked them to give Mariah some Versed, the only tears shed were ours. 

Isn't this a sweet picture? We were immediately allowed to the recovery room to see her before she woke. She was sleeping when we got there. As soon as I said her name, she opened her eyes and began crying. I took Jeremy's picture as he leaned over attempting to comfort her. Sorry for the poor quality.

This picture above is one of many moments where we were not able to console her. She was in pain and there was nothing I could do. I felt helpless. The epidural, morphine, valium, and Tylenol were not doing their job. It was horrible. Notice I am still in my jammies. Nothing in the world could force me to leave her side until we got this under control. Be still my heart!

This was discharge day! She was happy to leave this place. Especially if it meant a ride in this red wagon!

Dr. Rink was super nice to us. I don't require that in a doctor. I look more for surgical quality than bedside manner. Just let me say how impressed I am with him. He spoke so sweetly to Mariah and had so much patience with her. You see, Mariah doesn't like him much. He told us to get several toys out of the toy closet. After all, she deserved it. 

A friend of mine suggested that we pick up some extra Christmas ornaments while in China to give to all of Mariah's doctors. We did remember to do that and I am so glad we did. We have given all of her doctors an ornament with a Thank You card and picture. They all seem genuinely appreciative of something from China especially purchased for them.

This was a sight to behold!! There truly is no place like home.

We are at home healing. It is a difficult road for Mariah. We underestimated her pain. There is no way to really prepare for it. When she is happy, she is very happy. However, when she is hurting.....it is pretty bad. I hurt too, for her. Physically, the only thing I can do is hold her and console.  

We see her feeling better every day. It is so nice to see our sweetie back. Her appetite is great! She is such a good eater. She absolutely loves her vegetables! Jeremy found out this week that she also loves deer bologna. My dad gives us some every time we go home. Mariah will smell it on Jeremy's breath and take his hand to the kitchen for some bologna.

We will not know how successful the surgery was for a while. All I know is she needed this and at the very least we should have far fewer urinary tract infections which cause fevers. As I mentioned in another post, fevers can cause an adrenal crisis for Mariah. This truly was a life-saving surgery.

Thank you for your prayers for our family. There were many people from coast to coast praying for us. Many of whom we do not know. There were people from my own church who were praying and continue to pray. Our parents' churches were praying. Our siblings' churches and friends' churches were praying. I'm sure others that I'm not even aware of that prayed. Thank you so very much. 

We were given a measure of strength and grace from the Lord, like we have only experienced a couple of times before.....for Ben's spinal surgery at birth and more recently his kidney problems. We truly leaned on God.

I am exhausted from our hospital stay. God gave us the strength to stay up for countless hours while watching our baby struggle. We listened to the monitors beep constantly due to her high heart rate, her high blood pressure, her medication finishing, for occlusions in her iv lines and more. I would never want to experience that again but we would if it was necessary.

I also wanted to take a minute to thank those of you who helped us out before and since coming home. Jeremy came home from church (the Sunday before we left) with several cards. All of which included money for us to help with the expenses of living away for the week. We were so humbled that you all thought of us and gave of your own to help us. This is what the body of Christ does for it's members and you were a wonderful example of that to us in our time of need. I don't mean financial need. We just needed to know that others were lifting us up in prayer and thinking of us, thinking of our baby. 

This week I had a friend from church bring supper to us. It honestly was so welcome for me. I was very tired, and admittedly sick. I have tonsillitis. I had little energy to prepare a meal. To be honest, I needed to grocery shop too. The meal was delicious and most appreciated.

Of course, I also had a birthday this past week. My kids don't understand why I don't get excited for my birthday anymore. Well, at 38....it's not all that exciting. Jeremy gave me breakfast in bed, bought me beautiful roses and a few other gifts. Cake and ice cream topped off the night.

We will continue to stay home and heal. I'm not sure when we will be out and about. I'm in no hurry. Mariah will go back to Indianapolis in February for more tests. Again, they will be sedated tests. We ask that you continue to pray for swift, gentle healing and for her anxiety as she sees doctors.

In the meantime we rest in this promise: 
~Malachi 4:2    But for you who fear my name, the Sun of Righteousness will rise with healing in his wings.