1.26.16 Social Recovery

At 2:30am the night before last, Aimee tried to engage me in conversation. She hummed at me and I hummed back. In the morning, she simpered and smiled at Ed. This is the recovery of Aimee that we have longed for daily. Her pain has lessened, her meds have lessened, and her sweet spirit is coming back to awareness. Her health has returned as well. 

I am filled with thankfulness to be here in health and recovery with Aimee. Hoping to be reporting back to you in a couple more weeks about ditching the cast and brace, about rebuilding muscles and dancing hips. 

Ps. After consulting with her Neurodevelopemental doctor, we have decided to let puberty continue to progress at this point, since she is nearly 7. 

1.14.16 Improving

Tired and fussy. Aimee and us too. 

Lots of improvement and we feel that the looming ER trip is now unnecessary. Hooray! We have such a toolbox at home that we can treat the remainder of the sickness here, but the lack of urine production was not an issue we could handle. Thankfully that appears cleared now and her kidneys are catching up.

In the midst of the other issues, Aimee is starting puberty signs again. Now that she is 6 it is less concerning to us, but it does mean we'll need to go back to consult with the endocrine clinic to discuss treatment pros and cons.

Continue to work towards recovery and health here. 

1.13.16 Joy comes in the morning

Last night was difficult with very little rest and very much worry. We decided to wait out the night before taking her to the hospital, because it is not going to be a simple trip with her bracing. I'm so grateful to say that with cathing this morning we got a moderate urine output, which is wonderful! Heart rate has decreased some. I even saw a little smirk on this cutie face. Plus, she is opening her eyes! 

The joy of this morning means the anxious butterflies can go back to rest. Praying that Aimee can stay home. 

1.12.16 Anxious

Aimee is still on the worsening end of this sickness. Trying to keep her oxygen up and heart rate down without too much time on bipap. Trying to keep her fluids up. Yesterday she didn't pee once on her own. This is the part where I fight the anxious feeling swelling my chest. Watching the monitor, listening to the breathing, checking the thermometer. Wishing she wasn't on fever reducers for pain, so I could know what the real story is. She is feverish, then cold. 

Thankful Aimee fights hard.

1.9.15 A Bug

She caught something. 

A few days ago Ed and I were so excited to see that Aimee's heart rate had returned to her normal range. Yesterday she came down with a fever and her heart rate went way up. Today she has been junky and is beginning to have some difficulty with fluids. Thankful that it is not a surgery related issue. Sad that she has to fight sickness at the same time. :( Praying that her long break from it this past 2 months will allow her to fight back easily. 

1.4.15 More News

In good news, we just got an approval from insurance to cover Liquid Hope, which is a shelf stable real food blend. We ordered this formula for using during surgery and recovery. It had all the nurses curious and talking at the hospital. It has been a relief to have her on pre-made food that isn't corn syrup solids. We really wanted to continue to use it going forward, but didn't see how it would happen. At $600 a month, insurance coverage for this medical food is a big deal! 

In sad news, Aimee is having a tough time since we changed out her dressings yesterday afternoon. Wish I could hold her to comfort her and me. 

1.4.15 Next Stage

Today, Ed went back to work. Last week, we figured out how to take care of Aimee on our own. This week, I must do it alone. Thankfully, Ed will come home evenings, because there are some tasks that I could not begin to imagine doing without his help. This isn't easy.

We have mostly managed Aimee's pain with medication round clock and as little movement as possible. The hospital bed was officially approved by insurance, including an upgraded pressure release mattress and guard rails. A huge relief! This allows us to do dressing changes, makes it simpler to do enimas/catheters, and is necessary to use the lift so that I can move her by myself. 

Sometimes, we have even seen this cute smile coming back! 

We have lots of help from our little men, though not always the help we are in search of at that moment. 

For this coming week, we have some goals.

1) eliminate the use of strong pain meds, moving to only tylenol and ibuprofen. 

2) heal her g-tube site, which has torn  and is leaking from the pressure of swelling and distended stomach.

3) keep everyone alive and painfree.

4) maybe move Aimee off of continuous fluids towards regular bolus feedings. 

5) manage skin care with weight shifting and keeping the 5 incision sites padded and clean. 

Thankful for the prayers. We are coming out of the dark fog and back into the light of life. Keep praying for Aimee as she slowly heals.