Trapped in the basement, but now free AT HOME!

What a day! As I wrote in the earlier post, we went to the hospital this morning not sure that Sumana would actually have her surgery. However, when we got in to the surgical waiting area, they took us RIGHT in! I guess a bed did open up and that kept Sumana on her slated surgery time. The real bummer was that in the basement there was NO cell phone coverage OR internet! It was such a claustrophobic/cut-off sort of feeling. So many apologies for not posting sooner!

The surgery was supposed to be about an hour; however Dr. Sanders had reserved the operating room for 2 hours. I was fine for the first hour and a half. We had our 'usual' waiting out the surgery crew: Melody, Deb and Sonia so there were plenty of distractions. However, as 2 hours approached I started to get really antsy (maybe it was the 4 cups of coffee I drank!). At 2 1/4 hours I was up and around asking questions. Then, thankfully, at about the 2 1/2 hour mark, Dr. Sanders came out to speak with us.

The surgery went VERY well, the rods were lengthened at 2.5 cm. The good and bad news is that now she's outgrown one of the rods and will need a new implant at the next surgery. Her left lung did not look very good on the initial x-ray, so he said she would not be extubated right away. What a disappointment! But, 45 minutes later, they called me in to see her and lo and behold, she was awake, tube-less and smiling!!! What a wonderful surprise!

The ensuing hours were VERY chaotic and stressful. I don't even want to go in to it. Greig says the bottom line is that it worked out for the best. There was so much drama going on about where Sumana was to go next, that they kept her in the recovery area . . . . and kept her . . . . and kept her. By that time she had had 2 glasses of water and a bit of cracker AND she had used her cough assist machine. When they finally said she'd be going to a regular room, I began to have second thoughts.

The other two experiences I have had on the 'regular' floors were not particularly good ones. Both times we were moved to ANOTHER room in the middle of the night. Also, I had to do all of the care of Sumana and we had all the usual hospital noise and interruptions. So, I thought 'If I have to take care of her any way, I want to go home!' And, that made me brave enough to ask the doctor if we could go home. The resident called Dr. Sanders and surprise, surprise HE SAID YES!!!! (By the way, her lungs sounded good at the time!)

So, we left the house at 8:15 this morning . . .the roads were snowy and we saw a couple accidents . . . but not bad . . . and we were home by 8:00 tonight. Sumana is doing really well. The bummer is that her pain meds make her throw up, so she hasn't had anything besides Motrin since 2:30 this afternoon. Her pain level is at a '5' so she's hangin' in there pretty well.

I have some pictures, but I'm pooped! I'll try to post them tomorrow. Thanks for your prayers for us today. Please continue to pray that Sumana's lungs stay clear and that she heals quickly.

Prayer Requested . . . . NOW!

The hospital just called and said there are no PICU beds available. Sumana's surgery may need to be cancelled. Even though she shouldn't NEED that extra care, the doctor wants to be prepared after our experience in August.

The doctors round between now (7:30 am) and 10 am. Please pray they find someone in good enough shape to move out to the main floor or to go home. Thanks, in advance, to our faithful prayer warriors!

BTW, when I came downstairs Sumana was doing her ankle exercises!!! LOL!! I told her, "No PT today!" We did do cough assist and OT exercises, though (and she was VERY agreeable!)

Surgery is Tomorrow!

"Mom, I can't wait for tomorrow. I can FINALLY get a break from my exercises!!!"

Well . . . maybe not. Sumana's surgery is scheduled for 11 am tomorrow (Wednesday) and she doesn't have to be at Strong til 9:30 am. That leaves PLENTY of time to do her exercises before we leave. (I haven't mentioned that fact to her yet. Maybe she can take Thursday off!)

We have had so little snow this year! I had to suppress that 'green-eyed monster' a lot over the weekend. To see all that beautiful snow and how it paralyzes places that don't know how to deal with it. I say, "We'll take it!" Our poor kids have only been sledding once this winter and there was so little snow that they got bruised doing it!

So, tonight and tomorrow we're supposed to get 5-7 inches. Hmmmm . . . . now I'm not so eager about the snow. We actually have to get Sumana to the hospital through that stuff. I can't just stay home and bake bread and cookies. The easy answer is to let my Maine-iac husband drive and enjoy the ride. Then, again, the snow probably won't even materialize. It's missed us every time so far.

Please pray for Dr. Sanders. I know he's back from Haiti, but I don't know what shape he's in. I know he gives everything he's got for every surgery, but I can imagine he's still feeling the effects of his work in Haiti. Also, pray that Sumana's lungs remain clear; that was the problem that kept her on the ventilator for so long in August.

Thanks in advance for your prayers. I'll ask Greig to update the blog as we get more information tomorrow.

Expansion explained

Many people have asked what Sumana's expansion/lengthening surgery is all about. She had the VEPTR placed in August (Vertical Expandable Prosthetic Titanium Ribs). Every 4-6 months the rods will be expanded/lengthened to accommodate growth and increased lung capacity. On Sumana's x-ray Dr. Sanders showed us the device on the end of each rod that will be adjusted. In the picture the adjustment spot is on the lower end of each rod (I'm not sure WHICH spot, though!). Dr. Sanders will make two small incisions over those spots and use a tool to 'crank up' the rods. The only 'bugaboos' with this surgery will be the risk of breaking ribs and device failure. As long as no complications arise, the surgery should last about an hour.

In doing some research, I found that in the near future doctors won't have to do an invasive surgery to expand these rods. They actually have developed a REMOTE to expand the rods in the doctor's office! How cool is that??? Family members have joked about accidentally cranking up Sumana when they actually mean to turn up the volume or change the TV channel!

Thanks for your prayers about MY health. While I still 'feel' a bit of cold symptoms, nothing has developed. I'm actually much better today than I was on Friday. I'll update Tuesday with Sumana's surgery time. Hopefully, Greig can update the blog at the hospital on Wednesday (I still 'don't do' laptop keyboards!!!)

Response from New York State Assembly

Well, I got a very prompt and personal letter from James Bacalles and George Winner in Albany. Many of you will remember our recent health insurance scare and my subsequent soap box tirade. I sent letters to all of our state and federal representatives bemoaning the lack of insurance options for working class Americans.

The response from Bacalles and Winner, while sympathetic, left me with the feeling of "that's just the way it is." Here are excerpts from their letter:

"While we understand the $700 per month cost is a burden for your family . . . . on the open market could run as high as $2-3,000 per month."

"All of the subsidized health insurances sponsors- Family Health Plus, Child Health Plus, Healthy NY--had to be approved by the federal government . . . ."

"The state tried to be as flexible as possible with options, sliding scales and generous eligibility guidelines, and still win federal approval. We don't anticipate these rules to change in the near future. In your case, you must choose to either work part-time while keeping your income level at a point where you will remain eligible for Family Health Plus or not."

So, it appears to ultimately be a federal issue. I still don't 'get' why Child Health Plus can charge monthly premiums for families who 'go over' the income guidelines and Family Health Plus just terminates coverage and a family is forced to consider the next equivalent option . . . with a price tag of $700 per month. I'm curious to see what kind of response I get from our representatives in Washington . . .

For now, we're opting for me to volunteer my Friday hours. This helps to keep our income in the right spot. I think this option allows us to retain our integrity AND continuous health coverage. I'm confident God will inflict us with a good dose of guilt if it is not part of His plan for us! He always seems to get His message through to us one way or another!

The Last Hurrah!

We're doing it again . . . cramming as much fun in as we can before surgery (while attempting to limit exposure to germs!) Sumana spent Friday evening with her AWANA girls' group at LeTourneau Camp. They ate lots of food, played lots of games (Sumana got to teach her friends how to play Wii bowling--she learned in PT) and in general had lots of fun.

Today, Sumana and I spent a few hours making Valentines and other cards. Though I'm a Stampin' Up! demonstrator, I don't think we've ever sat down with such a concerted effort. She had her list of cards to make; I had mine. It was a lot of fun and a good project to get out of the way!

Please keep Sumana's health in your prayers. AND, mine, too! I've been fighting off a cold for several days. I even wore a surgical mask during school on Friday. I'm being so psychotic about Sumana not getting sick from others and she's being exposed to plenty of germs right at home. UGH!!!

Her lengthening surgery is Wednesday. We won't know the time til Tuesday afternoon. As long as there are no complications, the surgery should be over in about an hour. However, her experience in August has the doctors calling all bets 'off'. Thanks for your encouragement and prayers as we press ahead this week with Sumana.

"Weird" and "Outstanding"

First of all: Weird. That's how Sumana described the sensation of the nerve testing. She had 4 wires to her head, 3 on her upper back/neck area, 3 on her lower back and 4 on her legs and ankles. She said it felt like her hands and feet were falling asleep. The funniest part was when the technician applied the electrodes to her neck. It tickled her so much! She giggled and giggled. It was really cute.

Now: Outstanding. That's how Dr. Voter described Sumana's lung function today. (Now this is "outstanding" for Sumana, not compared to any normal function tests). Though her overall lung function is about the same (low 40%), her inspiratory numbers HUGELY improved (from 39 to 96!!) I had mentioned to Dr. Voter how much Sumana hates using the cough assist, so she was quick to praise Sumana for her hard work. She stressed how much better and healthier she's getting. But, when Sumana asked her when she could quit the cough assist machine, the doctor told her probably not for a long time.

I guess it has also been a rough season for lots of Dr. Voter's other patients, so she was especially pleased to hear about Sumana's good health AND that she caught a cold AND got rid of it! Again, she told Sumana this is because of the VEPTR and all of her hard work at PT and the cough assist. Dr. Voter was pleasantly surprised to find out that Sumana walks on a treadmill EVERY DAY. Sumana told her she gets short of breath sometimes after doing that, but Dr. Voter said, "keep at it . . . don't stop the treadmill!" So, hopefully, Sumana 'gets' the fact that her hard work (even though "boring") is really making a difference.