Day 5

It's dad... attempting to write tonight. My heart is heavy as I think of Sumana laying in her bed hour after long hour. Today I took Sumana's sister (Gretchen) and brother (Andrew) to see her at the hospital. They let me know that it was a little eye opening to see her so helpless and confined to the bed. Sumana was so glad to hear their voices and responded to them best she could with eyes slightly open and a nod for 'yes' or 'no'. There was a little more discomfort apparent on her face as she worked through the afternoon. As you can see she is hooked up to all kinds of tubes including the new feeding tube that is going into her nose. What you are seeing on her face around her mouth is the tape to hold the ventilator in place. I thought a picture of her in her current state would help us all pray for her. I am so thankful for all the doctors and nurses and their care for Sumana. She is being WELL taken care of.
Thank you for all your prayers. Continue to pray for Cheryl and that she will be able to get enough rest. I believe she said she would be sleeping on an air mattress tonight. She has been so thankful for the Ronald McDonald House as she has already mentioned.
I guess we were hoping for a best case situation thinking that Sumana would be in the hospital for 6 or 7 days. I think at this point we just keep praying that she makes progress each day and apart from that... we'll see.

More rest time required

Unbelievable! At this point, Sumana is going to stay on the ventilator til Wednesday. Her chest x-ray was better today, but the other numbers 'they' look at were not so good. There has been improvement with the ventilator taking the deeper more regular breaths for her, so they want to continue that today and see if they can get some more improvement. Thankfully, they will put in a feeding tube today and give her some Pediasure. This should make our girl happy. When she's been 'awake' she's let us know that she is hungry and thirsty. I guess the Pediasure should make her feel full and give her some nourishment.

I have just spent almost two hours typing on Sumana's in-room computer and lost everything!! So, if you're interested in a similar, yet different writing . . . check out the caringbridge site and visit 'sumana'. I'm trying to remember everything I wrote there, because I still can't figure out how to copy and paste without a word processing program. UGH!!

here's my 'Ode to the Ronald McDonald House':

We love you RMH, oh yes we do!
You give us beds for sleep and coffee, too!
We know without you, we'd stew!
oh, RM, we love you!

How silly, huh?? Well, at least know that I have written this more out of boredom, than from sleep deprivation. I have gotten lots of good night's rest and naps since we've been here. So far, no one else appears to need the room, so I'm going to take advantage of it as long as I can!

Thanks to everyone for their prayers, visits and calls. I'm holding up pretty well. I find strength each day in the Psalms. I'm praying David's prayers for Sumana and find real comfort in being able to do that. My mind is still pretty scattered, so it's nice to read a prayer and pray it back to God. Please continue to pray for Sumana's respiratory issues. Once we get past this we can really move on to her recovery.

No, it's not

Well, I jumped the gun. Sumana has a few more strikes against her than anticipated so she is NOT getting off the vent today. Her chest x-ray is noticeably worse and her blood pH is off. I guess she is retaining too much carbon dioxide. She also has a lot of secretions from her nose and mouth, as well as a considerable amount of fluid draining from her chest tube.

Though this is holding her back from recovering physically from the surgery, staying on the vent sounds like the best plan at this point. They have been allowing her to breathe as she needs/wants, but that obviously has not been working. The doctors have upped her vent so that she is breathing fairly deeply and consistently. This should really help her lungs expand and maybe get that 'junk' out before it turns 'bad' on her. Also, her sedation and pain meds are back on.

So, they're saying 'at least one more day' on the vent. That probably means I'll get another good night's sleep at the RMH upstairs. Yea! I doubt I'll get much sleep after they take the sedation away. She was VERY agitated this morning as she was starting to come out of the sedation. She kept waving her hands, mouthing 'something' and raising her eyebrows. I felt soo helpless. She really seemed to want to tell me something, but didn't know what. Thankfully, her nurse said that's a common reaction to coming out of sedation. Oh, joy, we get to go thru it again when she gets of the vent!

Tube's coming out

I think it's official, though it's only 6:30 in the morning. sumana's tube is coming out this morning. In order to extubate her they're taking her off ALL her meds. UGH! It's going to be a rough morning. Please pray that Sumana can handle the pain until she can get her meds back. They are stopping all her IV drips at 7 this morning, then once the floor doctor makes his rounds we'll know for sure if they'll take it out. Yesterday, he said even if her chest x-ray wasn't better today, he would still get her off the vent. I guess the risk for pneumonia starts going up from today on.

So, I'll try to update again as soon as I can. Even though this computer is only 30-40 feet from Sumana's room, she'll probably want me close til the pain is managed again. By the way, if I have time I want to write 'An Ode to the Ronald McDonald House.' I've been so blessed to have a room for 2 whole days! I think I'm getting 'bumped' once Sumana is extubated, but that's okay with me. That means sumana is getting better!

Sad morning

The good news is that I slept at the Ronald McDonald House last night. I slept from 9:30 til a little after 5 am. Boy did that feel great! However, when I got back to the room Sumana had been giving her a hard time suctioning her out. That stinker is still so stubborn! Even when she's sedated and doped up! (Some things never change!)

Well, the sad thing this morning is that she may have to stay on the ventilator ANOTHER day! UGH!!!! Her secretions have gotten really bad. She can blow a series of bubbles out her nose that would make Andrew proud! At least with the nose, I can help suction her out. The bummer is that most of the junk is in her chest and it just rattles around there . . . I just keep praying it doesn't settle in there. The x-rays show her right lung is doing well (that's the one that was deflated in surgery). However, the left lung has quite a bit of fluid and isn't working as hard as it should (what's new, though, it's always given her a hard time).

The chest tube will also stay in for another day or two because she's still getting a lot of drainage. The good news there is that the color is changing and there isn't much blood in it any more.

I found a Bible verse from Psalms yesterday, "keep me safe, oh, God'. I've been praying that for Sumana. She's definitely not very happy. She's crying quite a bit now . . . only tears because of the vent . . . but it's sooooo sad. And, soooo quiet. For such a motor mouth, it's rough NOT to hear her talking. (The silence wasn't too hard to take the first day, but I'm over that now! I want to hear my little girl talk and laugh again!)

Thanks for your prayers. I'll try to post again as soon as I can. There is no word processing capabilites on the computer I'm using, so Greig is having to copy and pasted this info to caringbridge. Sorry for the delay on that end.

A Hard Night

Well... here we are just past the 24 hr point after the operation... I'm sitting in her room and for the moment she is resting well. There was a lot of discomfort and sleeplessness last night for both Sumana and her mom. Right now Cheryl is getting some much needed rest in the Ronald McDonald House as she might have gotten a half hour sleep total last night. In Sumana's restlessness she was trying to pull the tube for the respirator out of her mouth so they had to put restraints and weights on her arms. Although this sounds harsh... it is a great thing because for the most part Sumana is resting in a sedated state and the respirator can continue to do it's job of helping to get the fluid out of her lung. The lung that was deflated during surgery is doing really well but the other lung (that Sumana has developed pneumonia before in) has fluid in it. Because of this they decided to keep the respirator on her at least until tomorrow. The original plan was to possibly take it off today but that is not going to happen. Dr. Voter (the Pulmonologist) just stopped by to listen to her lungs and she said they sound good and seemed to be encouraged and is doing as well as could be expected at this point.
I'm not nearly as good at explaining things that are going on as Cheryl, but I thought I would try to give at least some kind of update. Please keep praying... we covet your prayers especially now at the critical time.

We made it through!

Well, it's about 5:30pm and Sumana seems to be resting fairly comfortably. We arrived shortly after 7am and she went back to surgery around 8:45. By 3pm she was in the PICU (but we didn't find out for almost an HOUR!). We were told for 3 HOURS that they were 'closing her up'. Now even I questioned that there was that much closing up to do!!! I guess they finished around 2:30 and had her transferred to the PICU by 3.

Anyway, the surgery was a success. The doctors feel like they got a 'good amount of correction' on her scoliosis curve. She looks soooo straight in her bed. One of her visitors today commented that she looked taller to him already! (I know she is!) The only complication had to do with her ribs. She has extra ribs, fused ribs and malformed ribs. The surgeon had to make a patch (!!) to help keep her lung away from the VEPTR rod. It doesn't sound like it was much of a concern. She did NOT need a transfusion and her lung came right back into full use right after surgery. The only concern right now is her blood volume and respiratory-type issues. She will be sedated and on the ventilator overnight and if her x-rays and bloodwork look good tomorrow, they'll start to wean her off the vent.

She has woken up several times this afternoon to stretch and try to pull out the ventilator tube. Please pray that she'll be able to keep from doing that. If not, they'll have to restrain her (oh, no!) She has nodded 'yes' and 'no' to many questions. Particularly disturbing was when she nodded 'yes' that she was in pain and 'yes' that it hurt on her side. Poor, baby! They just 'upped' her pain med, so she is 'out of it' again.

Thanks for you prayers. God has proven faithful yet again. It is amazing to see how He has used the doctors and medical devices to work so mightily in our little girl. The next 24 hours are especially critical, but she's off to a good start. We'll keep you updated as we know more.