PT and OT

Well, after getting some school done, Sumana and I got our haircut. It was a rather momentous occasion. Miss Shelly said that today was the easiest haircut ever for her (with Sumana). Usually, she has to prop Sumana up, have me help tilt her head up or down, etc., etc. Pretty involved process. Anyway, Sumana now sits up so straight and tall that cutting her hair is not an issue. Yea!! Another bonus I didn't even think of! They better list that on the VEPTR website in the benefits of surgery column.

Then, we did our usual shopping errands and headed to PT AND OT. Sumana had already done her respiratory and PT exercises this morning (VERY grudgingly, I might add!). By the time she got thru with all of her upper body and leg exercises she was whooped! She really worked hard and Miss Kristen and Mr. Darryl seemed pretty pleased with her efforts. If we can just keep her motivated and work around her emerging 'attitude', she will be VERY strong and healthy, very soon!!!

Church and a painter's mask!

Well, Sumana made it to kids choir, sunday school and church today. But, she did in a painter's mask and lots of hand sanitizer. I noticed lots of people being rather paranoid about illness, too, so I didn't feel quite so crazy! Lots of people were avoiding hugs and grabbing the hand sanitizer after shaking hands. Hopefully, lots of people will stay healthier this fall by taking some precautions.

Anyway, Sumana really had a good morning and then ate another HUGE lunch and dinner. (Still sounds like good news to me!!!) One item of prayer tonight, though. We have a pre-teen with us tonight. She actually was placed with us in cooperation with the Sheriff's office. I think it's a long story, but I didn't ask. Our job is to give her a safe place for the night. She's settled down alot already. Hopefully it'll be a quiet night. (please pray to that end!)

What an eater!

Well, I did forget my camera Friday night. Too bad! Our Sumana can really put away the food. It would have made a great picture to show all she ate! She ordered a cheese quesadilla and ate the WHOLE thing! Then, she proceeded to pick away at her mom and dad's fish fry! She probably ate a third, maybe a half of our huge battered fish. THEN, we had an apple cobbler at our friends' house and she ate a HUGE bowl of that!

Now just in case you're thinking it was a one-time deal . . . NO! She has been eating like that all day today! I hope this means she's getting on the healthier side of things! I only gave her one albuterol/cough assist treatment today (only 2 yesterday!). She really seems to be doing well.

She is very anxious to get to Kids choir and church tomorrow (she missed last week because she was sick). I keep hearing about all these colds and viruses that are going around and I can't help but be nervous about her being around germs. Here's how paranoid I am: I called my friend who's a nurse and asked if she had any face masks that Sumana could wear. (She's not sure if she has the medical kind, but her husband thinks he has the painter kind!!)

I hate to make her wear one, but we can't afford to have her get sick. Greig's youngest nephew gets married next weekend in Pennsylvania and she CAN'T get sick!! I know I should have faith that God will protect her from 'whatever' is out there, but I also want to be smart about helping her stay healthy. She has been sooooo good with using a liquid hand sanitizer. I even got her her own bottle that she carries around with her! I just plain freaked out by how a simple cold with Sumana becomes pneumonia within 24 hours. UGH!! I guess besides praying for our whole family's health, you can pray that Sumana will survive her crazy mom's antics!!!

Forgot my camera!

Oh, man! We went apple picking this afternoon and I forgot my camera!!! UGH!!!! It was soooo beautiful. I guess you'll just have to imagine Sumana under an apple tree picking apple after apple and placing it in her bucket. It was quite a sight. And, the apples were so plentiful it didn't take long for us to pick 50 pounds! Apple pies and apple cobblers here we come!!

Sumana still seems pretty healthy. She had more symptoms at bedtime last night, but she's seemed good so far today. She also got a whole day of school in. We actually have two whole weeks of school done! It's great to be able to 'double up' when we get behind. If we can get in some more good days, we should be able to get back on track with our initial school plan. Hip, hip, hooray!!!

Tonight, all three of our older kids have plans. This means Sumana gets to go out for fish fry with Mom and Dad and their friends. This should be interesting! Maybe I'll remember the camera this time!! LOL!

Really good day!

What a good day Sumana had (particularly, breathing-wise). She didn't get up for a 5:30 am breathing treatment AND she didn't even have coughing fits when she did wake up. Greig and I decided to cancel her doctor's appointment, but continue the albuterol and cough-assist today. We did that this morning, but then she didn't need anything else ALL day. (No Motrin til lunchtime! She went from bedtime til noon on one dose!) We'll do the breathing treatments tonight and probably twice again tomorrow.

So, we actually stayed home ALL day! I even took my long awaited nap! Tomorrow Sumana has PT in the afternoon, then hopefully we'll be home again on Friday. I could really get into staying home again!!! Yeeeeee-hawwww!

Two trips to Canandaigua

Well, Sumana woke up today just like most other days lately: coughing, trouble breathing, low grade fever . . . . So, we went in to see her primary doctor this morning in Canandaigua. She didn't cough at all on the way out or in the office. Surprise, surprise her lungs were clear. Thankfully, the doctor listened to me stress about how rough the last few days have been. He suggested it was time to give her a course of steroids to help her get over this once and for all.

The whole day was much easier for both of us. Except, of course, the fact that I had already planned to be in Canandaigua this afternoon. She did pretty well in physical therapy and even did some modified sit ups (first ones since the surgery!). Then, she got to meet Mr. Darryl for her occupational therapy evaluation. It was pretty clear that she's got some post-op issues to work through. Some of her goals are to be able to put on shirts independently, drink from a cup and raise her hands above her head without pain. Pretty reasonable, huh?? In addition to these post-op goals for her right side, she will also learn some exercises that should help strengthen her left side (which is affected by her spina bifida).

So, that means PT and OT on Tuesdays, PT on Thursdays. She also will probably be going back to her primary doctor tomorrow to make sure she's finally on the road to recovery. Whew! I'm ready for a nap!!! LOL!

Post-op update

Well, there you have it. The top picture is from today, showing a curve of approximately 32 degrees. The curve on her early August x-ray (bottom) showed around 52 degrees. (Today, though, Dr. Sanders measured close to 70 degrees on one of the curves . . . I guess it depends which curve you're comparing) At any rate, there has been GREAT correction and excellent chest cavity expansion. Dr. Sanders is VERY pleased with the results. We're VERY pleased with his expertise and gifts that he used to help our girl.

The official word is that Sumana grew 3.5 cm. (I thought it would be closer to 2-3 inches!) She goes back for another check up in a month. The next expansion is planned for February. As far as I know, it is an outpatient procedure where they make a small incision and crank up the rods. Also, Sumana asked if she was the oldest patient to receive a VEPTR implant and she found out 'close, but no cigar'. She is the most physically mature patient Dr. Sanders has ever worked on, but there is an 11 year old boy out there that takes the 'oldest' prize.

The not so good news is that Sumana had a really rough day with her lungs. It started before 6 am with coughing and trouble breathing (albuterol nebulizer to the rescue). Thankfully, she got back to sleep and slept til almost 10! Then she had more albuterol and chest PT and we headed out for her regular PT with Miss Kristen. After that we headed to Dr. Sanders (more albuterol inhaler on the way). By the time we were on the road home (3pm) she needed MORE albuterol. When we got home at 5 she was in really bad shape (back to the nebulizer and chest PT).

She was so bad at dinnertime that she couldn't eat or breathe easily. That meant no AWANA. She was sooo upset and crying that her breathing was worse than ever. UGHHH! Poor girl! We barely made it to an 8 pm nebulizer treatment and more chest PT. What a day! I'm sooooo tired of all these treatments, and I'm not on the receiving end!

Bottom line, unless she's much better in the morning, we're off to her primary doctor tomorrow. There really isn't much more we can do to help her. I guess we could start up the middle of the night treatments again, but that's soooo hard on all of us. She also has a PT make-up tomorrow and an occupational therapy evaluation. Unless she's in the hospital, I'm going to do my best to get her to her therapies. She seems weaker than she did right after leaving the hospital. It's a vicious cycle from needing exercise to get stronger body and lungs, but being too sick and weak to do them. UGHHHH!!! So, again, please pray for wisdom for us all in the morning and healing for Sumana's lungs.

Two steps forward . . . one step back

Well, I have to say Sumana is still much better than she was Thursday, but she's still not doing great. She needed albuterol at 6 am and again before nine and then every 3-4 hours since. UGH!!! She's been 'freezing' today. UGH, again! It's over 70; it's beautiful! She doesn't have much of a temp; but she's still on Motrin, so I guess she's still fighting it. I did make her go out side for an hour, though. (I'm such a mean mom, huh! Making her kids go outside on a nic e day???!!!!)

So, even though we managed to get out to Crosswinds last night between treatments, we couldn't swing ANYTHING at Middlesex Baptist today. Tomorrow I'm cancelling her brace check up so that she only has her post-op appointment with Dr. Sanders. Hopefully, that will help keep her on the 'healing track'. Thanks for your continued prayers!

She's Much Better!

Sumana woke up in a better way today. No coughing. No crying. But a fever of 101. So, I wasn't sure if I should be happy about the 'no coughing' or not. I thought that maybe the fever meant that things were settling in more. However, when we got to the doctors' office in Rochester and had her checked out, it was definitely GOOD NEWS! Her lungs were quite clear and she was acting much more like herself. The doctor said that the antibiotic probably took effect right away. (And, a lot of prayer helped, too!)

We ran some errands and before I had finished all the errands, Sumana 'hit a wall'. She started coughing and having trouble breathing. So, thus ended the errands . . . postponed til another day. We came right home and got the albuterol and meds going again. She definitely is still dragging tonight, but sooooo much better than yesterday!

Sumana has an adjustment scheduled for her braces on Monday and the ever-anticipated post-op appointment with Dr. Sanders later in the day. That'll be an exciting day!

Pneumonia :-(

What a bummer! Miss Sumana has pneumonia. UGH!! We've been working so hard to keep her lungs open and healthy . . . but she still got sick! I knew she was not feeling great yesterday . . . she was literally dragging her feet. Then, this morning she woke up crying. She was really upset about not being able to breathe (I think we would all want to cry!) She coughed and coughed almost uncontrollably. It was so sad.

We got in first thing to see Dr. Byer from Sumana's primary's office. Once again, it's her left lung that's the culprit. He's concerned enough that we go back to see him again tomorrow morning to make sure things aren't any worse. In the meantime, we're going to squeeze in 4 respiratory treatments today and have started on an antibiotic. I also informed Dr. Voter (her pulmonary doc) of what's going on. So, I'll keep you posted.

Our first bump in the road

Well, Sumana has been doing sooooo well it's really taken us by surprise. However, yesterday and this morning she is having a lot of difficulty breathing. The respiratory treatments aren't cutting it . . . I think I'll go back to 4 treatments today and see if that helps. Also, a trip to the doctor might be good to make sure things aren't 'settling' in her lungs. Sigh! Just when I was reveling in getting back into 'normal' life . . . I know 'it's' out there on the horizon.

I've been pondering the title "Sumana's Faith" lately, too. Faith is an unquestioning belief in something, a complete trust, a resolute stand. What a tough word! I can see that while my faith in Christ has always been there, I certainly have questioned and wavered a bit in His plan for our family. His way is always best, but that doesn't mean it's easy! In regards to Sumana, her faith in Jesus is so real . . . it's beautiful to see. And then, when you consider her determination to overcome challenges in her own life . . . WOW, what a package! She really is such a blessing! Please pray for her health today and for wisdom on my part to know who to call and what to do. Thank you!

AWANA!

Well, Sumana went to the orthodontist today (braces coming in 6 months or so . . . :( Then, she had PT with Miss Kristen. Afterwards, we visited with Great Grandma Williams. She ate 2 ho-ho's, a cookie and a huge glass of chocolate milk. (No wonder she didn't eat much dinner!)

Then, she went off to the AWANA blast off night. She was supposed to be 'watching' game time, but as you can see from the picture, she got right into it! She was sooo glad to be there. We had warned her months ago that she would miss the first few AWANA's. I guess we forgot about the power of prayer and the determination of one young lady! As you can imagine, she was VERY tired and ready for some pain meds when we got home. I'm just proud that she gave it such a good try. The more she tries, the stronger she'll get (I think!!)

Sunday School and a Picnic!

Well, Sumana made it to Kids choir this morning and Sunday School. She probably would have stayed for church, too, but I didn't want to overdo it. She had soooo much fun . . . 'even though her voice isn't back yet'.

Then, after resting a bit, we headed up the hill to the Conservation Club. The Dorman/Emory family had a reunion of sorts. Our cousins from Texas and Pennsylvania even came. What fun! And, Sumana was in the middle of everything! (Especially playing with her cousins!) We only stayed for a couple hours, but Sumana was pooped. I guess she also had reached her pain limit, 'cause she took a FULL dose of the pain meds when we got home. She was really glad she went, though. (I posted a picture of her with Great Uncle David at the picnic).

Tonight she seem fine . . . except very 'itchy'. Those steri-strips are starting to loosen up! I bet they'll be mostly off by next Monday when she sees Dr. Sanders for her post-op appointment. Incidentally, at that appointment we hope to find out the 'final results' of her surgery . . . i.e. her growth and curve correction. In the meantime, she has therapy twice this week and a check-up with her orthodontist (that's an odd ball appointment, huh???)

ICU Withdrawal

Well, here's one of my 'back-stories'. I've waited to share it because Sumana has had so much news of her own to share. So, here goes:

Thanks to the Ronald McDonald House and lots of prayer, I adjusted really well to PICU life. I stayed with Sumana the majority of the time, but I got out to the play deck almost everyday, I got a good night's sleep most nights, and there was always plenty of food in the RMH frig to choose from. However, I'm thinking I adjusted a little TOO well.

When my dad picked us up last Saturday to take us home, I had the most bizarre experience. EVERYTHING was overwhelming to me: the sun, the crowds at Wegmans, the noises. Yikes! I guess being isolated in our little PICU room really had an affect on me. We had plenty of visitors and there were plenty of noises and plenty of nurse interruptions, but I really adapted to them. I guess it was still a controlled, predictable environment, (in an ICU sort of way!)

I realize you probably can't relate and it may not seem to be a big deal . . . but, WOW! Did it ever affect me! Today, I took Sumana to Sunday School and I had a very similar reaction at church. It really has something to do with crowds, noise, etc. It's funny that shopping at the outlet didn't affect me . . . of course it was very quiet/uncrowded there and we had a specific objective.

Anyway, it's not a very pleasant feeling. Hopefully, I'll get over it soon. At least we've adjusted well to being home. We're down to three respiratory treatments a day and I only have to get up once at night to help Sumana to the bathroom. It's just amazing to me to think that we've only been home a week and Sumana is doing stairs, walking to and from the van, and actually PLANNING on going to AWANA tomorrow night. God is GOOD!

Some New Pics!

So, here you have it: The Before and After. You can see Sumana still sits heavy on her left 'cheek', but now she doesn't need to!

Here's Sumana in two of her new outfits . . . sporting her new, wider shoulders!

So Much to Tell!

I have soooo many 'back stories' to tell (not Sumana's back, but behind the scenes stories!) But first, an update an today's events. Sumana slept ALL night til 5 am, then again til AFTER 9 AM!!! That's gotta be a record for her! I kept checking on her to see if she was in pain or needed albuterol. She kept saying, "just wanna sleep". So, sleep she did! (She went all night on one dose of the pain meds and then a Motrin 'booster' at 5 am).

After our morning respiratory therapy I asked if she was up for shopping. MY GIRL, said 'YES'! So, we made a trek to the Waterloo outlets. Sumana got some new shirts, dresses, pants and sweaters. She had sooo much fun! She loved telling the sales people that she had surgery and grew so much that she needed new clothes!!

Because she slept in so late and then we did the 'shopping trip', I decided today was a good day to try three respiratory treatments instead of four. Sumana did not cough AT ALL today til dinner time. I think I'll see how the night goes and how she is in the morning. If it goes okay, I think we'll call three treatments 'good'. Somehow, three is so much more manageable than four. I'm sure Sumana will be happy for the change, too!

So, 'back stories', I already am out of time for them. But as a reminder for me, and a teaser for you, I have stories about the PICU and PICU withdrawal to share. Also, I have new 'after' pictures of Sumana's back, but they really don't show the change. I'm going to try some different angles and try to get her to sit 'straight', now that her back allows her to. (Miss Kristen noticed that she is still sitting 'lopsided' out of habit. Something else to work on!)

More Good News!

Yea! The chest x-ray taken today is much better! There are still signs of fluid around the surgical site, but the left lung we've been working on is greatly opened up. Dr. Voter agreed with Dr. Hollister and I about dropping the middle of the night respiratory work; but said we should continue it four times a day until Sumana seems to not need it. Then we can drop back to three 'beatings' LOL!

I was also concerned about when to let Sumana get back into her social routine. She so LOVES being around people, I was afraid she'd want to get back to the routine before she was actually able. Dr. Voter encouraged me to ease Sumana back into her 'social' stuff. I think we'll try Sunday School this week and (maybe) even an hour of AWANA. I guess the key is not to wear Sumana out. She can do whatever she can physically handle. Pretty cool, huh??

I'm so encouraged to see how much stronger Sumana gets every day. She is so determined. And, she really doesn't complain much. I just know that if I were in her shoes I'd be laying around, sleeping all day, moaning about my aches and pains. Good thing she's the patient!

Well, tomorrow is the start of PT again. (Tuesday was considered an 'evaluation'). Afterwards, we're going to hit a store or two to look for new clothes. It's amazing how much wider her shoulders are than before. Hardly ANY of her tops fit! She's soooo excited (actually, so am I!!)

Good News!

Sumana had her follow-up with Dr. Hollister (her primary) today. Her lungs sounded good (for her!) and we agreed we could stop the middle of the night 'beatings' (respiratory therapy). We're both looking forward to sleeping in our own beds for the WHOLE night tonight . . . hard to believe it's almost been 2 weeks!!!

Sumana also had an evaluation with her PT, Miss Kristen. She walked with one crutch down the halls and around the gym (probably 75 feet??) with Miss Kristen 'spotting' her. Then she did a series of endurance tests . . . sitting unsupported, standing unsupported, etc. It really appears that she is actually stronger NOW after surgery than she was after her more minor surgery in May. Unbelievable! That's the power of prayer and lots of hard work on Sumana's part (her PT, too!)

We're going to request occupational therapy for Sumana for a few weeks, too. Her right hand is very shaky and she can't lift her arm above her head without pain. If you can imagine having all your muscles cut and moved in your shoulder blade area; you can probably imagine the healing that needs to take place in order to get your arm and hand functions back. Sumana really struggles with feeding herself and almost anything requiring her hands. OT should help us retrain her as her muscles heal.

Tomorrow we're off to Strong for a follow up chest x-ray. I know we could have had one done in Canandaigua, but I really wanted her pulmonary doctor to be able to compare this week's film with Saturday's. I'm hoping the fluid is still dissipating. I'm wondering, though, how long it will take for the fluid to go away and if she is exposed to germs at this point, if her lungs are at a higher risk for pneumonia. (???) I'm going to ask around tomorrow. I'll let you know!

VEPTR Experience in Review

Just wanted to share some pictures of from our hospital 'adventure'. Dr. Pagoli and Dr. Sanders are planning their 'moves' before surgery. Then, there's a pic of Sumana with all her tubes and such. Then an x-ray showing her new straight back. Sumana with feeding tube, but no ventilator. First time sitting up. Then a pic of her playing basketball on the playdeck!

I'll try to get my 'after' shots taken today so we compare with the 'before' shots!

We're home!

Surprise, surprise. Sumana DID come home Saturday afternoon. Her lung x-ray was MUCH improved from Friday AND she was doing everything they wanted her to do; so they sent her home!


Now, mind you, though it is wonderful to be home, it is NO picnic. We have to provide aggressive respiratory therapy every 4 hours around the clock. Add in frequent bathroom breaks (we're still pushing fluids), and that means we rarely get an hour break. That was particularly hard last night, I didn't get more than 2 hours of sleep at a time; I didn't officially 'get up' today, til 3pm!

Friday night was rather 'memorable'. Sumana was experiencing a lot more pain and discomfort when she was 'cupped' (whacked on with a respiratory mask). So, I offered to stay with her til after her midnight regime. Then, I planned to go up to the RMH and sleep on an air mattress. But when midnight came, our nurse got really busy and didn't do the cupping. By one a.m. I went to ask her about it, and a resident told me it looked like we would be moving 'to the floor' soon because they had several new patients coming in.

Long story, short: We didn't move til 3:30ish and by the time we got settled in and ready to sleep, the orthopedic resident came in to make sure she was okay and THEN the x-ray tech showed up. UGH! We didn't get to sleep again til 5:30!! Dr. Sanders came in at 8ish and said he thought we could go home. I was a little uneasy because her PICU doctor hadn't seen her chest x-ray yet. Dr. Van der Jagt was more than happy to look at her x-ray with me. We saw definite improvement, but still lots of fluid hanging out in her chest cavity/lungs. Dr. Van der Jagt felt it was okay for us to go home as long as we maintained a consistent regime of respiratory therapy. He was so pleased, that he even left the PICU to go see Sumana and give his good wished to 'one of his favorite patients'. (she makes an impression on everyone, doesn't she??)

Today, Sumana walked out to the deck several times. Then, this afternoon she wanted to go out to her sandbox!! She walked with her walker all the way out to the sandbox and played for over a half hour. By the time she got back to the couch, she had been up and around for a whole hour! What a trooper!

Thank you, again, for your prayers and support. Please continue to pray for Sumana's healing, especially her lung situation. We're hoping to hang in with 'the plan' til her appointment on Tuesday. Then, hopefully, we can drop the nighttime therapy. Also, I'd like to ask you to pray for my health, too. I usually have a hard time staying healthy when I don't get enough rest. I'm hoping to break the cycle this time, so I can be there for Sumana.

Boy, can she work!!

After having another poor x-ray this morning, Sumana seemed to be determined to do everything she could to help get herself out of the hospital. Her left lung was worse today, lots of fluid, showing significant areas of collapse.

Her PT, Miss Kristen, visited today and was able to give her some exercises to do in bed (PT has not shown up YET at the hospital--UGH!!) She also is on a strict respiratory program . . . cough assist machine, cupping, some kind of sucking contraption and a couple other things I can't remember right now. She started the day by sitting for 8 minutes every hour, then up to 11. Once Daddy got here with the wheelchair and she got in it, she was up for an HOUR!!! We took her to the playdeck with Miss Melody. When we came back to the room, the occupational therapist was there, so she stayed 'up' to do some work with her. (She is showing lots of decreased motion and pain in her right arm).

She also started eating food yesterday and tonight downed a ton of spaghetti and meatballs, broccoli and carrots, a roll and a container of pudding. (That sounds like a girl on the road to recovery, huh??) To top it off, she is walking with help to the bathroom and even tried a few steps with her walker!

Dr. Sanders told us this morning she 'might' be able to go home tomorrow. I think she's made enough progress today that if her x-ray looks better tomorrow it may actually happen. I think Sunday is more realistic, but if we can go sooner we'd all be happy about it!

ICU Pyschosis

Ever hear of that??? I never had, but that's what Sumana had last night . . . scary!!! I got a call at midnight that Sumana thought she was at home on the couch and that I was upstairs sleeping. (???!!!) When I got down there the nurse had some other wacky statements to share. She seemed to calm down when i got there, but she still didn't know where we were. About an hour later, it all changed and she got VERY angry and agitated and start pinching and thrashing around. I was not her mommy and she was not my honey. (That's right from her mouth!!) That continued throughout the night. She kept growling, 'Let's go back NOW!!'. (where, she couldn't tell me).

It was pretty funny at first, but quickly became kind of scary. I went from laughing to crying . . . (I think I was the psychotic one!!!) The doctor explained the effect of sleep deprivation (who would've thunk that one is not sleeping when sedated???!!!). Sumana had a combination of days and nights being mixed up, withdrawal from her pain meds and overall disorientation. Thankfully, when the sun came up, she was much better. Also, at the same time she was finally allowed to get some morphine . . . she had only had Tylenol throughout the night because I told the staff i didn't want to go through the withdrawal twice!! Poor kid!

Greig came to the rescue early and right after the doctors made their rounds, I headed upstairs and got 3-4 hours of sleep!! What a relief!! We had lots of visitors today, greatly in part to one of our neighbor's sons being just a few doors down the hall from us. Those visitors got 2-for-1 day!!!

With all of Sumana's thrashing around last night, she pulled her chest tube out part-way. The surgical team completely removed it this morning, but there continues to be a lot of drainage. She also developed a lot of chest pain on the right side this afternoon, so they took a THIRD chest x-ray to see if the fluid was building up again. The oddball result is that her LEFT lung is showing signs of collapse!! UGH!!! So, she's going to get cough assist workouts every 6 hours, cupping and PT every 2 hours (4hours at night). Hopefully, this will help her out. But, I anticipate another LONG night. She is dealing with a lot of pain and we're trying to manage it wisely without wiping her out (she doesn't breathe effectively when she's sleeping).

The positive for today are that Sumana kept her ventilator off, got the chest tube out and got her feeding tube out. She also had grilled cheese, tomato soup and chocolate pudding for lunch. 15 oz. of apple juice as a snack and a chicken finger for dinner. She also has increased her sitting angle to around 40 degrees. So, even though she's not out of bed yet, I guess she made a lot of progress today. Please pray that it will continue and that as she starts moving around, her lungs will clear out. She's giving us all a run for our money!!!

The Vent is OUT! (no, really!)

I hesitated to post earlier today because of my experience on Sunday. But, the tube is out! She had a bit of a rough 'go' this morning . . . labored breathing and lots of wheezing (she was totally off vent support). They gave her LOTS and LOTS of albuterol over the 2 hours before extubation and seemed to be ready around 10 am. They took out the vent tube and immediately put her on a Bi-pap machine. This is giving her pressure with every breath, as well as 40 percent oxygen. After a lot of tears earlier, she is resting comfortably.

I was concerned that when they extubated Sumana, they would send us out to the 'regular' floor. However, she is considered high-risk, so they're going to keep a close eye on her before they send her out. I have even requested that they keep her here til she goes home. As long as there is adequate nursing staff, they will honor the request and just drop her level of care to that of a normal floor. Please pray that she would be able to stay here. I really feel the doctors understand the complexity of her pulmonary issues and I'd hate to try to have to go through the 'learning curve' with another set of doctors when she's already on the road to recovery.

And, FYI, I got to stay in my Ronald McDonald House room another night. I haven't heard if I will still have it tonight, or not. Actually, I'm not sure if Sumana will let me leave her. We'll have to wait and see. At any rate, I have an unrestricted pass to the House til September 10 (I hope we're long gone by then!!)

I've been reading!

I had a few extra moments so I've FINALLY been reading thru some of the comments you've left for me. Lots of encouraging stuff! And, especially the protocol from a nurse friend. I've heard various things that are helpful to healing, but it was good to see it in print with a time frame. I will really be paying attention to the timing of things today and make sure she's getting moved and cleaned out as often as she should be.

As for the offers of help, we're doing pretty well. Enough visitors to help pass the day and give me a chance to go outside for lunch or get a nap, but not so many visitors that it's a revolving door. Greig is doing a great job of keeping up with the kids at home. It is nice that we have two extra drivers and two extra cars . . . it keeps them occupied . . . but hopefully not in too much trouble!!! (LOL) I also think that food is quite plentiful as well at home.

As an update, Greig was able to be at the hospital early enough to hear the doctors chat about Sumana during their morning rounds. Once again, I'm loving the medical school part of the hospital. Since there are all levels of residents in the unit, there seems to be teaching going on at levels I can actually follow. Sumana's chest x-ray is a little better again today. However, there are more noises during the physical exam, so there is still 'stuff' in there that needs to come out.

Her different blood tests are mixed results at this point. Thankfully, the carbon dioxide levels are dropping and her pH levels are improving. I guess the sodium and chloride levels need adjusting now. Since she's tolerating her 'food' now, they're going to back off her IV fluids and see if that will help the levels to adjust themselves. There's so much chemistry involved . . . it really is pretty interesting!

So, they say 'maybe tomorrow' for losing the vent. They are going to prep her like they did Sunday: cutting ALL fluids (including sedation and pain meds) and backing off on the vent settings. She is soooooo ticked off when she is 'awake' that she can raise her pulse and blood pressure to set off the alarms! I am going to give her some paper and pencil today and see if that will help her communicate. Her spelling is really bad, though, so I don't know if it will be much easier to decipher her handwriting than her lip movements!