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.
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.
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!
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!
She’s been back for about 2 hours now. A nurse has not come to update yet, but we do know that they got her to go to sleep easily with no issues. We are all sitting in a waiting room. Other families are scattered throughout, with about the same expressions on their face. I did my best to keep it together as they wheeled Bai away this morning, turning my tears so the girls couldn’t see. I don’t want their hearts to worry as much as mine. I simply can’t image a world without my raspberry blowing, teeth grinding, rattle playing, dirty look throwing girl. I could have snatched her from the bed and ran out the front door, but I saw her back again as we were putting on her surgery gown and I know this is a must.
Nurse just showed up – they have not cut as of when she saw her last, about to start. Breath held. Hours to go.
They have a coffee machine here – I’m 3 deep. At what time does it change to wine???? I’ll take red or white. Just sayin’!