Tuesday, April 17, 2012
Hi! Sorry I was off for a bit, but we took a quick break and rest when we returned home, as you can imagine!
Katie Grace Hua Hua is doing great! She is running around and playing just as if nothing ever happened. It is hard to keep her from being too active as the instructions given ask!
She doesn't think anything of her long incision and chest tube incisions. They are just part of her and she really doesn't mind them at all. They are still slightly scabbed but never bruised. These incisions should heal well and fade to fine lines.
She is still weaning off several meds, about 5 days left of that, and then she will remain on the Pulmonary Hypertension medication for about 6 months.
We have been back to the hospital 2 times. Once last week, just a few days after discharge for an echo to look at the cardiac effusion (liquid in the heart), which was diminishing quite well and for a wound check. Then we were back again yesterday, only because I had a job interview. :) I brought the 2 girls and Christina took Hua Hua to lunch while I interviewed. Then we went up to PCICU to visit our nurses and Dr.s! Hua Hua's favorite nurse and true love, Collin, was there, so that was quite an exciting visit. ; )
Here are some photos from Easter. That was the day after we arrived home. Katie Grace was a bit too medicated to go to church, but Christina dressed her in her Easter dress and took pics of the 2 littles. :)
Wednesday, April 11, 2012
Everyone was so gracious with their prayers for our little Katie Grace Hua Hua over the past month. Now I ask that you might continue your prayers for this sweet girl. She has had complex heart surgery and is having a very hard time. This beautiful girl and her need prayer!!
I would post her photo, but I know her mom has a lot going on right now and I don't want to bother her to ask. So just click below to see her!
Tuesday, April 10, 2012
Let's just start with the most important picture, as far as Katie Grace is concerned. :) We had a lot of nice nurses. We had some fun nurses. We had some cute nurses. But put the nicest, funnest, cutest, nurse into one and you get Katie Grace Hua Hua's crush of the year.... presenting.... Collin!!!!!!! She just fell in love, I guess! The amazing thing is, she is always very stand-offish with men. She won't even let them pick her up. But ohhh dear Collin. She was all about Collin. She would call him if he was out of the room. He even came down from the NICU to see her when he was not at the PCICU. She has been carrying his picture around at home!
This pull up sure made for a nice hat! That might be what attracted Collin in the first place. ;)
Her nurse Cheryl gave her an Easter basket too. It had some really neat goodies and crafts! Thanks Cheryl!
The kids and neighbor kids made a welcome home sign! What a welcome sight as we pulled into the driveway!!
Thanks to mother-in-law who did that entire load of work and cared for the kids for the 1st couple weeks, making sure they got to every activity and appointment and school event. She is priceless!
T'hanks also to Cassie and Tony, my other neighbors, they brought over like 6 casseroles. Delicious and helpful!!
Thanks to Scott and Sarah who also brought us a large delicious meal!
Saturday, April 7, 2012
Katie Grace Hua Hua has recovered well ! She has her feet under her and is ready to go home!!
I thank God BEYOND WORDS today as this Holy Weekend brings contemplation of sacrifice and a grateful heart as He brings this little girl home safely.
I am so grateful for the AMAZING team of doctors and nurses here at APH. I could not have found better care anywhere else in the world. How incredible is that? I will not forget what a blessing it is to have this care. These nurses and doctors work around the clock. They never stop working. They are patient and kind and gentle with the children. The nurses are so diligent as they carefully check every detail over and over, constantly time to make a change and knowing every minute change could mean something huge. They have unending responsibilities and have to have complete knowledge of every detail of each child's health and what to do at every moment. Because this is a critical and intensive care unit. They also keep Katie Grace clean, comfortable as possible, with a clean bed at all times. The Drs and nurses are patient with me and treat me as part of her care, telling me what they are doing and listening to my questions without acting condescending. They all discuss every detail and make decisions several times a day. They are ALWAYS right outside her door. I have never been left thinking, "where is someone??" I have had faith in their care. I know each of them by name, but there are many and I won't name them all here. I thank each one of you.
Katie Grace is physically ready, her emotions are not quite there and she has some confusion about what home means. I keep showing her pictures and encouraging her and it does, but then when she is not looking at the pictures, she is afraid of what a "move" again means, poor baby. She has improved in this emotional area this morning though, I noticed, and said, "ok" when I told her we were going home.
Made a pretty mirror with her sister. She loves looking at herself in it. She even looks at her chest incision and wonders about it.....
Ok Mom, I'm ready to roll! She loved riding around in this little push car yesterday!
Sea World came and put on an Easter Egg hunt!! It is funny that Hua Hua is so timid with people who talk to her, but she was just fine with a GIANT furry whale walking up to her to visit!!
"So anyway....." She is just having a great conversation with Shamu!
It is time for the Easter Egg Hunt!!
Lauren, our Child Life representative was so awesome during our entire time in the hospital. She brought us gifts, projects, came by for chats, and also took us to these fun events! She is awesome!!! Here Hua Hua is meeting Dolly the Dolphin.
Ok, group photo. I tried so many times to get a good shot and kept missing her looking up. It's pretty darn cute anyway!
Thursday, April 5, 2012
I was told this morning at rounds that Katie Grace Hua Hua could be discharged today, pending getting her medications filled and scheduled properly by the end of the day! Well I was pretty excited about that so I began packing her things in the room. (you can collect a lot of things, toys, gifts, projects, etc after a couple of weeks!)
Physical Therapy came in to do some exercises and then we attempted to take her for a "walk". Well she just sort of leaned and walked to the left and sort of shuffled her little feet along and swerved back and forth, knees wobbling. Dr. Piggott was watching from across the way and he came over to talk to me when we got back and he said he was concerned about sending her home with that much medication still in her system. They have to give me a VERY slow, 3 week wean plan from the Methadone and Adivan at home, and she would probably be like this for a good portion of that if they wean this slowly. He said we would have to keep her from falling for many days and not let her get up and just go on her own. Or we could stay a few extra days and they will do a controlled, yet very quick wean from these drugs and get most of them down to a minimum so we could go home with a more stable walker. I decided to go with his suggestion, because I knew when we got home, it would be impossible to keep her down for a couple weeks when she would want to chase after her brothers. Here she is already in her bed and we can do this now. So here we are for a few more days.
So, the "power wean" is on. Please pray that she can handle it and pray that she will have minimal withdrawal symptoms.
Also, pray for her emotions. She has digressed in many ways even though her spirits seem to be more up today on the surface. I will post more about that tomorrow. She doesn't want to "go home' now, she very frightened and somewhat detached, among other things. She is worried and confused.
"Child Life" had craft day in their area and the kids got to attend and make Easter Bunny crafts and candy necklaces.
Look at what I made, Mama. She still looks a little woozy and well, she is. The bunny sort of looks like how she feels, I just noticed! :) Bless their little hearts!
Whew! Back in the "comfort zone" of her hospital bed exhausted from those crafts. :)
Daddy came and they played catch with the ball. Great strengthening therapy and fun! Kick it!
Now throw it!
Guess who came for a visit?? Her brothers! She was so excited they were coming, she hid under her covers and popped out giggling and squealing to surprise them! Boy were they actually surprised because the last times they visited, she would never wake up and had more things hooked up to her.
Let's play for awhile!
We will read you a book and the teddy bear responds to your voice!
We will do some puzzles
We will snuggle for a little bit! She loves that quilt that a quilting ministry made for the kids in the hospital and my friend Molly, who is the Guest Service Manager, sent it up. What a blessing.
Wednesday, April 4, 2012
In case I haven't mentioned it, Minnie Mouse is Hua Hua's favorite! Lenora, Joseph and Elijah gave her a beautiful new Minnie that twinkles and giggles. She LOVES her! Her she is showing us! (On another note, sitting up without support.) Off many more "lines" of meds.
Getting a good look at Minnie. (Was a welcome gift I had her open yesterday as she was still struggling with ups and downs of emotion as she is coming of of drugs.)
Minnie gets a kiss. Sweet.
Fast forward to today. She is having Minnie get her blood pressure checked and putting an ice pack on Minnie. :) Do you notice something different??? She is off the oxygen canulla!! Weaned off that last night! She was also taken off all IV lines today although she is take MANY oral meds that I will get a weaning chart. She had final ECHO today and her heart is doing great! Her right ventricle has already thinned! She is now going to have her central line removed from her neck.
Monday, April 2, 2012
Physical Therapist, Amber, getting Katie Grace to the side of the bed sitting up straight for the first time with very little support and to do some 'activities" while she sits.
Katie Grace sitting in the PT chair enjoying some time OUT of that bed, reading a book. Still a little woozy sometimes during the day, as you can see by the eyes, but not all day! Sometimes she was much more clear. :)
What a sight these pics! Don't let the smile and the quiet moment with a book fool you completely, the last 48 hours or so since I had posted last have been quite a whirlwind of ups and downs and also very active.
The good news is, Katie Grace Hua Hua is OFF THE VENTILATOR FOR GOOD and making great progress!! Praise God of Heaven and Earth for His Goodness and Mercy!!!
She spent the weekend struggling coming off the strong sedatives and painkillers. Crying and crying quietly, shaking, jittering, fever and scratching her itchy self. Now don't get me wrong, they are giving her something to help her come down, but tying to figure out the right times, doses and if she doesn't spit it out made for a tiring couple of days.
Now she will be on a med to help her withdrawal from those meds and then she will need to be weaned off of that med. It is a very trying circle for her. This will take at least 4 more days if not more.
She is down to the 1 liter setting on the oxygen canulla, where she was set at 5 liters after coming off the vent. They have dialed her down each day. They hope to take her off the canulla tomorrow!
She is still on the heart med for one more day, and the sleep assistance for 2 more days.
She is off the blood pressure medicine and is taking a Pulmonary Hypertension medicine that works on her lung pressure which in turn keeps her BP down. She will probably go home with this med for awhile.
She is eating a regular diet! She had scrambled eggs today, grapes, chicken noodle soup, jello, and more!
The physical therapist was able to get her to sit up unassisted and do some puzzles, then stand with assistance. She also spent an hour in the PT chair.
All in all, she has progressed by leaps and bounds thanks to God's Mercy and the kindness of your prayers and her amazing inner strength and an amazing team of Drs and nurses, which I will post more about tomorrow!
It was just a few days ago that we were told this will probably be quite some time on the ventilator because she was struggling, then suddenly she held strong and they said, we're extubating! And that was it!
That turn around was nothing short of amazing.