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!