1 Week Post Surgery

IT HAS BEEN A WEEK SINCE SURGERY! A date we dreaded and Praise God, it has come and gone.

Friday morning Bailynn got her last drain removed from her back and she got to come home!! We were thrilled at this! Not only did her eating improve once we got home, but her mood did as well. There is absolutely something to be said about being home.

Our family spent the weekend trying to recoup sleep and find our new groove for the next few weeks. The storms that rolled through did not help!

Yesterday we had to change her bandage, clean the incision and re-bandage it. She also got to get cleaned up! Her hair doesn’t look hospital disgusting any more! This all went surprisingly well and she tolerated me removing a ridiculous amount of sticky bandaging from her back. Her dirty looks were in full force, but no screaming or crying!

Bailynn’s pain management is also something we are always concerned about. She once again shows us just how amazing she is by going longer and longer stretches between doses. She went all night last night, sound asleep, with no pain meds. I don’t know how, I’d be in intense suffering mode.

Today I’m going to try to get caught up on house work and work. Bob got to return to work and get caught up on all the chaos that happened last week with a piece of equipment being damaged. It is nice to fall back into routine.

We are still waiting on return dates to Riley for post op. We have to go back on May 16 for ophthalmology. Her plastic surgeon has to remove her staples in the OR in 5-7 weeks now. Our running up and down the highway has not stopped …. nor does it feel like it will in the near future.

For Her




Before – After

Bailynn had an extremely good day yesterday, and we are starting today well.

She got all of her IV ports removed over the course of the day.
I got to see scans of her back and compare them to the previous scans.
She ate better, still not full eating, but better.
She sat up again for a long period of time.
img_7229I got to wash her hair with a shower cap thingy, that really isn’t the greatest, but got most of the dried up blood out of her hair. Her hair now looks greasy. Someone needs to invent something new for this.
Her dressing was changed around 3:30pm (indy time) yesterday, by plastics. He was impressed with how well her wound is healing – she does that – and I got to really see it. It is staples from neck to butt. It is a significant amount of staples from neck to butt. I will say that despite the overwhelming size and the little strips of metal littering her skin, it looks really good. I will be anxious to see how it looks iimg_7231n 6-8 weeks when we have to return to have the staples removed in the OR.
Then she got to put on fresh clothes – with pants! This is a huge step to feeling normal again.

This morning she got one of her back drains removed. The neurosurgeon, Team Unicorn Member, warned that she would not be happy, as they had to remove a stitch, pull out a huge tube, and then restitch her skin where it was, with nothing to numb the skin. Bai didn’t even flinch. Not a twitch. Not a moan. She just tried to shield her eyes from the bright lights the doctor had turned on. One more drain to go. It has been dry the last 2 times they have came to empty it. It will come out tomorrow morning I am sure.

I asked the Unicorn Neurosurgeon yesterday, while looking at the back films, if we could shoot for the weekend to go home and he said YES!!! YAY! He also said, though he knew we had told him she was quite the quick healer, but that he’d never expected her bounce back as quickly as she is. Bailynn is KING OF THE HOSPITAL (if you are Bones fan, you get it 🙂 ). Or in her case, QUEEN! She hadn’t had morphine since early Tuesday morning, until they changed the dressing yesterday. She is taking valium and lortab orally, and sometimeimg_7230s doesn’t need it till well past it time to be administered, I’ve been letting her sleep rather than waking her for doses.

She doesn’t like being moved a lot, but once rotated to a new position or sat up, she is fine.

Over all we have almost all our checklist checked to be able to go home. We’ve done this so many times, this list is ingrained in our brains. She needs to poo, she needs to not be on IV meds, she needs to be able to sit and tolerate it, she needs to eat, and she needs to not be connected to anything. All we have left is the back drain, then our checklist is complete! Our goal day is Saturday. I’d like to get her home and in her bed and have Bob have Sunday with us before he returns to work. She will do so much better at home, she always does. I swear she keeps her eyes pinched tightly closed here to pretend she isn’t here at all. Me too. These hospital sleeping accommodations are for the birds! Backless, boneless birds! UGH.
Pray for Saturday to be our day!

For Her.


1 Day Post Surgery

She is doing well.

Last night was rough, we really didn’t get situated in the room till nearly 2am.

Bob thankfully got the girls back to the place they are staying, at a decent enough time, to shower and plummet into beds. After they left, Bai and I started the routine of rolling from side to side, medications, attempts at drinks, back drainage tubes, cath tubes, and iv watch. We also had to get aquatinted with the nursing staff and get our bearings in our surroundings. Bai is in room 5223, on the 5th floor of Simon Tower. If you plan to visit, let me know, there are high levels of security to get through to her. Her art line died right as the clock turned to Tuesday,  and was removed, which subsequently made her have to be stuck at 4am for lab work. All her vitamin levels came back in normal range! Thats right folks! Weeks of fighting and beefing up these things and we succeeded! Bai for the win! Her cath was removed early – another win and she and I caught about 2 hours of uninterrupted sleep before plastics arrived at 7am-ish. I’m very sleepy.

This morning, way early, PT showed up and wanted her up and in her wheelchair, so up and in her wheelchair she went. She tolerated it surprisingly well. If you are friends with me on fb, you will have seen some pics of her up and even taking some swigs from her cup. At 11am we went downstairs for her to have an X-Ray of the hardware. There was some miscommunication on this, nothing big, just a new piece of equipment that the neurosurgery staff was eager to use, but didn’t realize the child was required to independently stand to do so. Well, Bai did the old kind of X-Ray, which is perfectly acceptable.

The day has rolled past pretty quickly. Thank goodness. She has watched Nemo and Dori – 2 times each and Charlie and Lola. She has half played with toys and eaten about half of what she eats in a typical day. I think that is a success. Also, she has barely whimpered. Warrior status attained.

If she wakes up a little more, here shortly, I’m going to get her up again and try to get her to eat some more. She is very unhappy about the rods going up into her neck this time and this is going to take some time to get use to. Her hair is a mess and a bath is not in the near future at all. Tomorrow brings us one day closer to that – and one day closer to home.

Till Tomorrow.

For Her.

Full Inpatient mode

She made it to her room a few hours ago. We’ve begun the battle for home now. She is doing really well. She drank some juice, swallowed the pills she needed to take tonight and closed her eyes to fall back asleep. We have a long night ahead of us and tomorrow will be the roughest day for pain, because she will be more awake and aware, but thank goodness today is done. Surgery is over. Next.

For Her

Finally we have closed

They closed for hours.

The Unicorn doctor came out and talked to us, a while ago. She did really well through out the procedure. They did decide to give her blood, though she only lost around 200cc. She has naturally low blood count cause of her bittiness. They are still harping about there vitamins and diet – UGH!!! Hardware went in easily, no issues. She should head to a normal room tonight and forgo ICU. Plastic just finished and we got to meet with both surgeons only a moment ago. She had a lot of scar tissue, which resulted in staples down her back, this is a small punch in the gut to me. The doctors explanation of why was sound, but I still hate them. Bai is not paper, but there was so much going on that he felt it was the safest option. They will have to remain in for 6-8 weeks!

We will get to see her in about 45 mins, then we will head to a room. I’m a hospital inmate with her tonight. Hopefully we both sleep better tonight than last night, being tormented with anticipation. I know Bob and the girls will. We all had a very sleepless night last night.

Our family has sat in a nooked out corner of the waiting room. The girls have relaxed playing games and reading. We are one of only 2 families left here. The day has seen many others come and go, some quick, not us. The anticipation of leaving is seen in all their faces. Everyone wants to see sissy. When we do, I’ll post a pic if I can!

For Her

They Never Believe Us!

Doctors tend to not believe us when we tell them how amazing Bai is – no really – they don’t. They see the frail little girl in a wheelchair. They see the chart full of blah, not the warrior before them. Blind.

This morning, when this all began, we were told by multiple surgery staff members that Bai was going to have to have a blood transfusion during this surgery. I told them how that had never been the case in the past. I told them she did amazingly through surgeries. Again, disbelief.

UPDATE: All the screws are in, the rods are going in now. She is doing really well and…….SHE HAS LOST NO BLOOD! I told them! 🙂 She rocks. A mighty oak in a pine box body. She is the master of defeating all odds and blasting through misconceptions.

She is now nearing closure. Please continue to pray for the breathing tube to come out with no issues. Also, there was some trouble putting the catheter in, though we begged them to not do this since she is so prone to urinary infections, and we are hoping they did not hurt her pee pee area, cause folks, Bai gets super peeved when the pee hurts!

Ok, that’s all for now. Hopefully we get to see her soon and then we are on the upward swing!