Sunday, November 9, 2014

Weekend Update

Seriously, back when I was a more reliable blogger, I'm almost certain I named multiple posts "Weekend Update" along the way... and now it's nearly 10 pm and I'm most uncreative right now, so I'm bringing it back!

So how is T? Well, early on we figured she must not be able to handle the pain medicine that included codeine, because of how frequently it seemed to make her sick. We eliminated that one altogether, replaced it with Tylenol, and she was fine -- for almost 24 hours. Then she reached a point where she couldn't keep anything down right after we'd give her the other medicines she was prescribed. Panic set in (for me) when she finally lost her antibiotic one night - the same antibiotic that she has taken and loved to take ever since she was a baby. I was most afraid that she might be having some kind of bad complication from surgery -- but she wasn't exhibiting any other symptoms to watch out for. After talking with the on-call doctor multiple times, we decided she just wasn't handling her bladder spasm medicine very well -- so reluctantly, we took her off of it. We even took her off Tylenol just to give her body a break from medicine overload.

When we did, we had a whole new Tams! The moping has ended for the most part, and she has had so much more energy the past day or so. We even took the girls to play at Barnes and Noble (or, as they call it, Thomas - because of the Thomas the Train set there!) and out to eat at Panera over the weekend (a classic T and E favorite), and she did well both places and kept her energy up! She's also getting her appetite back again.

So that's where we are tonight. She has kept everything down since yesterday morning, so we're hoping that this particular yucky streak has come to an end. She is still a very un-Tamsie-like shade of pale, but I've called about it once before and it wasn't terribly concerning to the nurse. You should know that by now I've called and asked so many questions that Friday morning, the nurse actually called ME! I guess she figured she'd be hearing from me sooner or later, so she tried to beat me to it! ;) (And then I wound up calling back again in the afternoon with an all-new question -- ha!)

This week my two amazing helpers (Chris and Mom) are going back to work, and I'm on my own with the girlsies -- so I am praying for a particularly calm and easy and super healthy week! :) As always, thanks again for praying for us!!!

Wednesday, November 5, 2014

First Day Home

Well our first day home has been more challenging than we were expecting. After seeing how rapidly Tamsie progressed from feeling totally awful to moderately OK yesterday, we figured the trend would continue. However, she has just really not felt well at all today.

She has vomited a few more times, run a low-grade fever and spent a good bit of time moping around. She has played with her sister a good bit but also wanted to be held a lot. Surgery is also producing some side effects that are terribly unpleasant and that she would kill me later on for describing to you now on the Internet, so we'll leave it at that. ;) We're praying that tomorrow will go more smoothly. We called the doctor, and if she's not a lot better by Friday, she has to go back to get checked out.

Evie, on the other hand, is exuberant to have us back home with her. She randomly says, "I'm so glad you're back again!" In other news, she has also started naming some of her toys "Surgery." I guess she has heard plenty of talk about it for the past few weeks! ;) We keep thinking how blessed we are to have a healthy twin to motivate the sickly one to get up and play. Evie sure is a better motivator than any of us are!

I have been more tired than I expected myself to be! I guess all this stuff has a way of wearing you out!

Here's to a better, healthier and more restful day tomorrow! Thanks for keeping up with us and praying for us along our way. We have such an awesome support system, and we never take that for granted!

Tuesday, November 4, 2014

Home Again!

We are HOME!! I can't say YAY enough!!!

And what a whirlwind it has been! Here are the updates:
* The doctor was very impressed with how T was doing when she stopped by. She reaffirmed that we were on track to go home in the evening! At one point I asked if T was doing OK for someone at her stage after surgery, and the doctor's response was basically, "No way would I even THINK of sending you home today if I didn't feel really good about where she is!" Our doctor has calmed my fears again and again, and she has been a tremendous blessing to us. She even came and prayed with us before surgery! I can't say enough great things about her.

* T spent the afternoon playing in the playroom and wandering around. She was even driving a cozy coupe at one point - TOTALLY different girl than she had been in the morning! She refused to go anywhere NEAR the bed until she just got so grouchy that we had to impose a naptime - which she quickly gave into!

* Everyone kept talking about how precious she is, which made my mama's heart so happy! They couldn't believe we have another one just like her at home! :) I remembered again how faithful God has been to us, ever since we first found out they even existed. He has a big plan for these two characters!

* I actually kind of thought it was ironic that everyone thought she was SO precious, because she started narrowing her eyes at anyone who came into her room. I guess she became accustomed to people who seem totally nice turning around and poking and prodding her! So please do not take it personally if she gives you an angry look next time you see her!

* My parents brought Evie up to visit late this afternoon, right before we got discharged! She was fascinated by everything, and she was beyond thrilled to see us - especially "my Tamsie," as she calls her sister. (T, of course, was a little standoffish even to her own twin after all that she's been through! So once again - keep this in mind if she seems a little distant next time she sees you!)

* We went home, but the car ride took a while because we wound up picking up dinner and T's prescriptions. When we were about 2 minutes from home, T got sick for the first time in this whole process. We're hoping it's the last time - NO fun! She went straight to sleep after eating a little supper.

* So where does she go from here? She will go back to her urologist next month for a renal ultrasound, to see how everything is looking. This surgery is effective the vast majority of the time, but the few times it's not, the doctor can usually tell in advance that it won't be. With Tamsie, her case was very textbook, so the doctor has no reason to expect any problems - but we have to keep an eye on it to be sure. Which means please pray. :) I'll keep you posted after her upcoming check-up.

THANK YOU for praying for us! We love y'all!!!

Recovery Time!

Tamsie is all nice and grouchy and in full-out recovery mode! This girl has some serious opinions on EVERYTHING from what she wants to do to whether or not she wants to eat to whether or not the TV should be on! Here are the highlights from today so far:

* Overnight her urine output SERIOUSLY improved, and now she's doing great and functioning well! Thanking the Lord for this!!

* Swelling is also down considerably today! Still puffy, but much less so.

* However, her heart rate has been higher than they'd like to see, likely because she has been running a low-grade fever. Right now she's at 99, which is lower than earlier, and right now heart rates are right where they should be! Praying that keeps up!

* She has yet to complain of pain!!!!! Of course we're pumping her full of meds... but I'll count that as a victory!

* She hung out in bed most of the morning, but kept being more and more vocal about wanting to get out of bed. Now the doctor told us long ago that the thing we would most need to do on Day 2 would be to get her up and moving around and playing, particularly engaging those core muscles. She also told us that was the one thing that we would LEAST want to do. Now I was picturing T throwing tantrums and such at the mere mention of it. I never dreamed it would look like it did: she was just lying around, hooked up to all sorts of things and looking weak and listless and saying she felt sad. It was pretty hard to imagine forcing the girl to do anything but lay in bed. But once she kept insisting, we called the nurse, who let us pull her around in a wagon. Yesterday the doctor strictly warned us about thinking of wagon rides as "getting her out," since it's so passive and is pretty much like staying in bed. But we also didn't want to overwork her to the point where she would fight us about this going forward. So a wagon ride it was! She loved it. We rode around upstairs and downstairs, and she saw a clown who gave her a flower and some stickers.

Eventually, we decided she needed to come back and sleep if she needed to, so that she would have energy to walk and play later - since she obviously wasn't feeling it then. She fought us tooth and nail on getting back in bed, saying she just wanted to stay in the wagon. We told her she could either sit up by herself in the wagon (instead of lying back) OR go to bed. She fussed and said, "I JUST WANT TO WALK." So walk she did!! She did great! She kind of waddled like a penguin, but SHE WALKED without fussing and did not want to come back to the room! She was so proud of herself, and we were so proud of her!!

Now we're just hanging out, waiting on lunch to come. I'm anxious for the doctor to get here and give us a new report, but this is all I have for now. We hope you're having a terrific Tuesday morning. Keep those prayers coming if you think of it, and also please keep Mrs. Kathy McMasters in your prayers. I grew up next door to her and her family, and she has always been like family to me. She's going today for a biopsy to check out some suspicious stuff after four months of being free of pancreatic cancer. Pray hard for them, and also pray for our friends the Wades. Today Amy is donating a kidney to her son Walker... so that should give you lots to pray about! :) Much love to y'all!

P.S. - I will post pics sometime (probably). I just haven't had a chance to deal with it. Until then, I'm posting on Instagram and Facebook periodically!

P.P.S. - Evie has really been doing great, but she has been missing her sister and Chris and me. She has cried some for us today. She may come visit later!

Monday, November 3, 2014

Tamsie's Surgery

Lots of people have asked us questions about T's surgery so they can know what's going on and how to pray for her. I'm sure many of you have heard about it so many times you can recite it all, but for our friends who don't know the full story, I just figured I'd get a post out there to explain what's been happening and to let you know how it's going and how you can pray.

* Now keep in mind that I'm writing this on a particularly chaotic day, on not much sleep, and it has been way too long since I've had caffeine! AND of course we all know I have no idea how to properly talk about medical stuff, so all you medical people out there can just go ahead and get a good laugh over my unfortunate medical explanations! (A nurse just came in and I seriously told her, "That thing just beeped. A nurse told me she thinks someone needs to flush it." I mean, super helpful, right?!)

OK, here are some FAQs as I think of them.

She has something called VUR. I thought about putting a link here, but the thing is that I never google it. I promised myself I never would! ha! :) (I had to institute a no-googling-medical-conditions policy years ago, because I have a history of freaking myself out over nothing! Whenever I violate it, I regret it majorly.) Basically the urine in her bladder refluxes up her ureters back into her kidneys, causing the kidneys to dilate. Over time this can cause tremendous damage, so it's not something to ignore.

In the past, we've waited and checked to see if she has grown out of it. (Most who have it do.) (But then her case is way more intense than most.) However, as many times as we've checked, the bad side has never improved at all. The better side has improved slightly. This past time we went, we found out that her reflux is causing secondary problems (like a blockage), so we decided the time had come to take care of it surgically.

Super routine. T's urologist does surgeries like this one nearly every week. However, our pediatrician sees a LOT of patients and he said that only about one of his patients a year needs this surgery. And this is T's lucky year! ;)

The day before the girls were born, I was having an ultrasound at the U of L Hospital. The doctor was checking out their twin-to-twin situation and trying to decide how much longer I could reasonably keep them inside. As he was examining Tamsie, he realized that one of her kidneys was dilated. So we've known about this since before she was born - and that has been a huge blessing! Consequently, she has been on antibiotics since Day 1 to keep her from having a UTI.

It can be a bad thing for a kid so small to have a UTI. Scarring can occur on the kidneys, and no one wants that. The doctor decided that the long-term effects of being on the antibiotic (which, by the way, are minimal because this isn't like penicillin or something - it's in a special class of antibiotics only used for urinary issues) were much less intense than the long-term effects of having multiple UTIs. AND the reflux puts lots of stress on the kidneys.

Praise the Lord, no! She has never had one. And that is apparently a special thing, because breakthrough infections are common even in kids on antibiotics.

Totally! That's why it seems SOOOOOOO weird to send her to surgery! We've always said E gets sick much more easily than T does, in general.

As bad as her situation is, she will have big problems later on. She's not growing out of it. Like she's much more likely to miscarry one day, etc. Plus she would be very likely to need a transplant at some point if this isn't taken care of.

Very well! It took about 2 hours, but when it was over, the surgeon's exact words were that it went "beautifully!" She did not run into any surprises, and she was pleased that T's ureters weren't any more swollen than they were. Also, there were two cancellations before her surgery today, so she got to go in much earlier than expected... which means there is a chance we may only have to spend one night in the hospital if all goes well!!

Yes. If you only fix the bad side, that can make the OK side eventually go bad - so you have to fix both at once in this case.

Originally we were thinking it would be a week... then we heard something like 3 days and 2 nights... and now we're hearing we may be able to go home tomorrow evening! So who knows!

It's supposed to be something like 2 weeks. But we really don't know what that will look like.

Her urine output is not what it should be. Please pray that her kidneys start functioning as they should soon! As I type, she is being pumped full of more fluid to make more urine come out. Please pray that this works!! And please pray that this surgery as a whole is successful!!
AND she's super swollen all over - which is to be expected, but if you know anything about the way my pregnancy ended, you know that I am totally freaked out by large amounts of swelling!!
*OK I've gotten so sidetracked that I actually typed that a few hours ago, and the nurse just came in and said that everything is now looking NORMAL!! YAY! BUT she has to keep it up before they'll consider her output to be normal... so keep praying!! :)

Thanks so much! If you have any more questions, please ask away and I will try and answer. I'll try and post more updates and pictures as they come.