I can’t believe we are already on Day 4 Post-Op. I have sat down multiple times to write an update… and have fallen asleep at the keys every time. We are EXHAUSTED!

I spent the first 24 hours with Rosie. Since then, Jose and I started rotating our time in the hospital. He covers 9am to 6pm and I do the 6pm-9am shift!

The hospital has been REALLY GREAT about letting us spend some time together with Rosie. We usually get to hang out with her an hour in the morning and an hour in the evening before we switch out. She’s still in the PICU right now but should be moving to a regular room today.

Rosie has done SUPER WELL! I am SO proud and impressed with how she’s handled everything. Rosie is a very strong-willed little girl…it’s why she’s still alive. It’s that determination and mindset that’s allowed her to survive Tetanus, Cerebral Malaria, Typhoid, Dengue Fever, etc.

MENTALLY:

Rosie is 16 years old, but has developmental delay and sensory integration disorder. She’s developmentally more like a 9-year old.

HOWEVER – after surgery – she became more like a 3-year old! With all of the pain meds & anesthesia – she became a giddy little girl! Rosie calls me “mama” and Jose “dada”. She says “HI” about 200 times a day. (Not an exaggeration).

She doesn’t really speak in full sentences but more like short sayings: I drink water, I cold, I roll over, I go potty, I hurt, etc.

“All Done” is her favorite saying. Whether it’s taking her meds, eating, using the bathroom, rolling over, etc. When she’s ready to move on – that’s what she says.

We have laughed SO much! Definitely there’s been a lot of tears and A LOT of pain… but she’s handled it all like a champ.

A few of our favorite moments:

• Rosie LOVES her balloons! She talks to them and hugs them! If Jose hits them – she laughs and laughs.
• Sometimes she hits the call light just so she can say HI to the nurses. At one point I fell asleep holding her hand beside her bed and the next thing I know she and the nurse are eating a popsicle. She pushed the button and told the nurse she was lonely and wanted someone to talk to!
• Rosie has 3 stuffed animals on her bed – a koala, a panda bear, and a prayer bear. Apparently, the panda and koala have been SUPER whiny. She had the nurse put the panda in time-out. She said she just can’t keep holding them because they are being super annoying. (The kola bear is flatter and she likes to sleep on it. The panda bear has been super jealous.)
• At one point – all 3 stuffed animals were at the bottom of the bed facing away from Rosie. She said prayer bear was praying over them because of all of the fighting!
• When we first started feeding her – she insisted Jose makes the chew-chew train sound before putting the spoon in her mouth.
• She likes for Jose to kiss/blow on her hand. She dies laughing. The first two days she stuck her hand out almost non-stop and craved being touched.
• She likes to pat Jose’s head and say that it’s Chloe.
• She likes to repeat sounds that people make. So, if the nurse drops something and says Ought Oh…she repeats it.
• She constantly wants to look at the x-ray pictures… she cries every time we show her. She keeps thinking that it’s not really her back but someone else’s. We have to convince her every time that it really is fixed.

PHYSICALLY:

Day 2 & 3 were really difficult for Rosie. She just couldn’t get comfortable in bed. She hated laying on her back, it’s impossible to lay on her stomach, and her hips really hurt when she goes from side to side.

She’s got a cooling vest on her almost 24-7. It really helps with the pain but it’s also SUPER COLD. She’s constantly shivering and has a minimum of 4 blankets on her at all times. Her hands are so cold that the O2 monitor has a difficult time reading her finger. So that machine is constantly beeping.

She doesn’t really sleep more than 45 minutes at a time before she’s moaning and in pain. I know she’s exhausted and miserable. Besides her back hurting – her bowels are backed up causing her stomach to constantly ache as well. She doesn’t want to eat anything because her stomach is so hard…which makes it difficult for her to build up her strength.

The first two days she was unable to do ANYTHING unassisted. It took 2 people to help her go from side to side. BUT yesterday afternoon we noticed a huge change. She is starting to roll over on her own. We have to place the pillows all around her – but she can grab the bedrails and slowly turn on her own.

Once we help her sit-up – she can push herself off the bed. With the help of her walker – she’s able to walk down the hall and go to the bathroom. She’s been doing therapy every day and there’s a noticeable difference now.

She may get to come home sooner than later! I was talking to the doctor today about taking over her care at home… similar to how I did my sister’s home health care. I can do her therapy, get labs drawn, and do everything else that she needs.

She’s now on oral pain meds and all the IV’s are out. We already have her room fixed at my brother’s house. The doctor and I both think she will do much better if she’s home with us in her own surroundings. She only sleeps a few hours total each day but maybe if she were home she could rest more. The noises & atmosphere are an overload for her. She keeps asking to go home.

Here’s a few pictures from the past few days: