Second Follow Up Visit

January 28th, Rainey went back to Children's for a followup visit with Dr. Collins, the cardiologist she's been working with since November. She had to do an exercise test, an ECG, and another echocardiogram. Everything looks good!!! The T wave they were worried about is normal. She rode for 9 1/2 minutes on the bike, up hill, with the oxygen measuring device on her face and wires attached just about everywhere! (she had ridden 10 1/2 minutes pre-surgery). Of course, she was disappointed in her performance! Only Rainey! She wanted 11+ minutes!! :-) The doctor cleared her to go back to basketball practice. . . no extreme weight lifting, no physical contact during practice, and no pitching/hitting yet. Two more weeks and then she's completely released!! She had pancakes to celebrate!

Thank you all for your positive thoughts and prayers! The power of the human spirit is well represented here! Rainey has to go back in April, November, and then once every year after that for the next several years. Cardiology will be keeping an 'eye' on her since her case is so rare.

A big shout out to Jennifer Eldredge who is putting together a scrapbook for Rainey about her experience with all of this. I am artistically challenged in scrapbooking! I've seen Jennifer's work. . . .she's awesome!

I will probably stop posting from this point. . .you have all helped us through this and I hope this blog kept you up-to-date on Rainey's progress. Thank you, thank you, thank you for everything.

Looking good! Follow Up visit #1

We went to Children's Hospital for a follow up visit with the doctor's. Rainey had an X-ray, stitches out, and EKG. They said she looked good, her resting pulse rate is 75 (still a little high for her but normal after a surgery like this), but they want to keep an eye on her T-waves from the EKG. Nothing to be too concerned about . . . just something they are monitoring. She will have another followup visit on January 28 along with an exercise test before she's allowed to return to sports. She is to walk daily. She can go back to school when she is ready but to avoid any lifting of anything over 5 lbs and getting hit in the chest. It was a good meeting! As active (and ornery) as Rainey is, some of this will be hard for her to follow! All of her friends have offered to get out of class early to carry her backpack! :-)

We also got to re-visit the CICU to drop off thank you cards and visit with the nurses. It was a little hard to go back to that area of the hospital. Rainey has been working on a volunteer project to give back to the hospital that helped her. . . volunteering as a greeter or maybe something with stuffed animals.

Thanks again for your support! Stop by and visit Rainey when you get a chance!

Getting better everyday!

Dawn here. . . Aunt Tammy had to return to D.C. :-( We will miss her witty prose and you will have to tolerate my linear, void of interesting adjectives or unique titles, writing once again! (the pancake title still makes me laugh) I cannot thank her enough for keeping the blog updated.

Rainey is doing SO MUCH BETTER! Having her home for Christmas safe and sound was the best present ever and the only one I wished for. The first three days at home were pretty tough. . . she had migraine headaches almost everyday. Today was the first day without a headache in site! She has been walking almost daily and has reached her goal on the little blow 'thingy' that the nurses sent home with us. She looks better and has been able to 'get back to reading'. You know Rainey . . . she reads about one book a day. However, don't be fooled. . . her mind is set on getting back to where she was before the surgery health wise, academically, and of course, athletically. She won't ever give up and she does NOT want to look back! I'm pretty sure she was bound and determined to get up right after surgery and walk right out of that hospital! She talked about playing Lacrosse and Football after she is better! She's such a kidder!

She would love to have her friends come and visit. . . just please call ahead so we can plan. It's much easier for her if ya'all come at different times so she can rest in between. Board games, going on a walk , watching movies, and of course, looking at My Space seems to be the 'fun' things to do here! :-)

We cannot thank each and everyone of you for your kind words, your prayers, the groceries, (the wine!), the goodie baskets, and your continued support. It means the world to us to have such a wonderful circle of friends. Your blog postings were read everyday, sometimes twice. . . . Rainey's eyes would light up when she would hear what you wrote. I know it helped her to a speedy recovery. We would talk about all of our friends after each reading and how lucky we are to have you in our lives. Thank you. . . . thank you. . . . thank you!

I will probably post one more time after the doctor's visit on Wednesday, December 31st. Please do not hesitate to email me if you need an 'individual update' :-)

May you all have an enjoyable, exciting, and memorable 2009!!

Take care and keep smiling!

Day After Christmas Update

Rainey’s first couple of days home have been good. Of course, she gets tired and is not out of pain, but she’s being a total rock star: She has walked around her neighborhood, eaten well, and done her breathing exercises (and got the machine up to where she was before the surgery, I might add). Dawn and Rainey have gotten massages. Rainey has a weird knot on her neck that was at least partially caused by them trying repeatedly to put an IV in place, which they’re trying to get rid of with massage therapy.

This update is much less detailed because I am following my own anal instructions – my brother had a cold, so I stayed away Christmas Eve and Christmas, and now I actually have something. So now I miss my little buddy, too. Maybe one of you who can go see her can add to the blog in the comments? Smile.

Rainey may get to go to school in a few weeks, and may even be playing basketball within a month. (My favorite check out advice from the doctor when we asked him when she could play basketball again: “Well, so long as she doesn’t take repeated blows to the chest…” and he was serious.)

As you know, Dawn, Rainey, and Grandma Rita will continue to need your help – groceries, meals, errands, and the like. The next month will continue to involve a lot a healing. But with the help of all of you, I’m sure that they will make it through this better than ever.

Love,
Aunt Tammy

Christmas Eve Update

Rainey actually ate a piece of pizza last night, and had a huge breakfast this morning. She actually got out of the house to get a massage, too (her body started to hurt more and more, which is probably in part from this very active young lady not moving for about a week).

Thanks much to the Higgins family, who brought over everything that the family needs for a wonderful Christmas dinner!

So Rainey had a great day. Thanks for all of your thoughts and prayers that brought her home for Christmas.

Love,
Aunt Tammy

Help with Christmas Dinner for Dawn, Rainey, and Rita

Dawn, Rainey and Grandma Rita need help with Christmas dinner this year! (This is an earlier posting, but so far, we only have the wine and the pumpkin pie off the list.) Please pass this blog onto others so we can knock this out.

Here is a wish list. If you decide to bring something over, please note it in the comments section so that I know what’s left (and so we don’t end up with 50 turkeys):

- Grilled primed rib
- Turkey
- Asparagus
- Green beans
- Cauliflower mashed potatoes (I never heard of them, either; I guess you just mash up cauliflower)
- Jelly cranberry sauce
- Peach pie
- French Silk Pie

You can drop off stuff whenever you’d like. If no one answers, please leave it on the front or back door. Also, kindly please only use disposable plastic wear or the like so the family doesn’t have to worry about returning your nice cook wear.

When leaving what you will bring in the comments section, please give your name and address. (If you do not want to leave your address on the comments section, please e-mail me (Aunt Tammy) at tss2@georgetown.edu)

Thank you for making their Christmas merry!!!!

Rainey's HOME - Last Blog for the Night

All, Aunt Tammy and Rainey are going to go to sleep. Probably for about 15 hours. So no news is good news (just didn't want to freak anyone out with the lapse of postings).

More tomorrow - she had about 20 of her closest buddies to welcome her home. Much fun. Very cool.

Rainey’s Coming Out So You Better Get This Party Started!!!

We are 99% sure that Rainey is going to get out of the hospital this afternoon and is going home! Her hematocrit test came back at 34.8 and, honestly, we didn’t need the test results to see the difference. She’s tired, in a bit of pain, etc., but she’s our Rainey again.

So let’s give her a SURPRISE homecoming! I will be up at Dawn’s house at 3:00. Please show up with welcome home signs, in uniform, or whatever you want to do that you'd think she'd like. Please pass the word since not everyone has the blog address. Dawn will call me when they are five minutes away, and we’re going to line the street for our little buddy. My guess is that they will get there between 3:15 and 4:00. We'll kick everyone out soon thereafter so she can rest, but I know she really wants to see everyone.

YEAH! Thank you so much for all of the prayers and positive energy you’ve been putting out there for Rainey. It has obviously made all of the difference in the world.

P.S. We’re still doing the game room at 1:00. So help me, we’re doing the game room. That’s the only reason I’ve hung out here. It looks really cool, and you can only get in there with a patient. Smile.

Making a Break for the Teen Room at 1:00

Hey all, there is a teen room with a movie theater, games, etc. on the 2nd floor of the hospital. I have the best Christmas movie collection on the planet, and we're going to get there this afternoon at 1:00 if you would like to join us.

Check in to the right when you walk in the doors, and take the elevator to the 2nd floor. Turn to your left, and it is the first door to the right.

My cell is 202-550-3921.

- Aunt Tammy

Come for the Surgery, Stay for the Pancakes

Rainey’s heart rate actually got into the 70s, which is obviously good news. Incidentally, it also makes for a better experience when one first gets out of bed to take care of business. As I said in the last blog, that’s when stuff has usually started going downhill for us (and since it’s the first thing in the morning, days have not been fun). So far, though, so good. And Aces is even eating some pancakes (Children’s Hospital is apparently renowned for their pancakes – voted the best in Denver; maybe it’s just me, but I’d prefer maybe the hospital be known for, I don’t know, something other than their pancakes… Just kidding; they are, but still.)

She is about to get another hematocrit test to see if her red blood cell count is doing better. If it isn’t, she’ll probably get another unit of blood. That said, I may not be a “real” doctor (as my bro points out), but she seems to be doing a lot better today, so I would be amazed if her numbers weren’t better. The doctors are pushing her to get out of here today. We’ll do whatever Rainey thinks she’s ready for, but if she can’t make it down to the teen room, I don’t see how she’ll navigate her house. So today, we’re preparing for a lot of work to see how she does.

More later.

Very Early Morning Update

Rainey got her last unit of blood about two hours ago. She also took another lap and (thankfully for her as well as us) had a shower. Coach Jamie provided much needed motivation to do a lot of the things we needed to do this evening. And I’m happy to report that Rainey’s heart rate has been steadily in the 80s for the first time since the operation (normal resting heart rate in the 50s, but we’ll take the lowering at this point – she’s been in the high 90s or 100s since the surgery, which is one reason she is so weak; imagine being on a treadmill for almost a week straight, even when you’re sleeping…yeah, I know).

Tomorrow, more walking, more exercises, more. So far, the day goes downhill after she first gets up. So good vibes, please, for Rainey around 8:00 or so. I won’t tell you what we do when she first wakes up, but I’m sure it’s the first thing that most of us do.

Evening Update

Rainey got her one unit of blood for her transfusion (she’ll get two). She is still pretty tired, but still has to do a walk tonight, and is going to take a shower. Our hope is for a good night sleep and a great day.

If all goes well, we might be able to get out tomorrow. I won’t walk you through the blocks that she has to get through before she gets out as some of them are, well, private, but we’re working on it.

More tomorrow.

Afternoon Update

BLUF: Rainey’s hematocrit test came back low, so they have opted for the blood transfusion.

LONGER DESCRIPTION: After being told that the hematocrit test would not take long to come back, we opted to wait for that before making the decision on the transfusion. Well, it took 3 tries to get the freakin’ results – the first two blood samples clotted, supposedly. When Rainey was on her walk, I went to talk to Jennifer, a kick butt nurse who recommended the Dilantin last night. “Whatever it takes to get the stupid results, we need to do that since we’re waiting on that for the transfusion.” Jennifer came in and got the job done. We had results in less than 30 minutes.

We just got the results, and her hematocrit test came back lower – a 22.8 (it was a 23.7 yesterday). Remember, this is the number that’s supposed to be in the 30s. So we’re going ahead with the transfusion. They should start within a few minutes.

Do you know that Simpsons’ episode where Mr. Burns got a transfusion from Smithers and ended up stronger than ever? That’s what we’re hoping happens with the transfusion. Fingers crossed.

Red Blood Count, and Never Trust a 14 Year old on Dilantin Pain Killer

BLUF: Rainey might have to have a small blood transfusion due to a very low red blood cell count that is probably causing a lot of her dizziness, nausea, and exhaustion.

LONGER STORY: Rainey had to get an x-ray down on the first floor today. She is having quite a bit of nausea, dizziness, and weakness. For one of the x-rays, the poor thing had to lift her arms, couldn’t lean against her mom, etc. Well, that was about it for her. She asked, “Can I please lie on the floor? Please?” in the most heart wrenching voice imaginable – she has gone of the floor a few times because of the cold factor. I said, “Buddy, it will hurt worse to get you up, and instead of being back in your bed in a couple of minutes, it will take 20.” I thought I had gotten through – you know, really reached her. But just so you know, you can’t reason with a 14 year old who’s doped up, hot, and in pain. About ten seconds passed. Luckily, I was kneeling by Rainey when she DOVE –yes, dove – to the floor. Had in not being for seeing antics like this from my two year old, I’m not so sure that I would have caught her, but I did. No harm, no foul. But I still feel betrayed and bamboozled by my best buddy.

The same doctor who diagnosed Rainey’s heart problem just came in around 11:15. He thinks one of the reasons that Rainey might be feeling so terribly is because of her low red blood count (determined by a hematocrit test; the number is supposed to be in the 30s, hers is 24), so recommended a blood transfusion. I spoke to my brother, who’s the chief medical resident at Swedish, and given her symptoms, he thinks it is a good idea. For instance, Rainey has a normal resting heart rate in the 40s. Since her surgery, it has been in the 90s or 100s. So for her, that means she’s working twice as hard even when she’s resting – like being on a treadmill since she got out of surgery. No wonder she looks at us with the “are you kidding me?” look when we tell her she needs to walk four times today.

She just got an IV put in, and they’re doing the hematocrit test see where the red blood count is (I would be amazed if it was in the 30s, or above 24, but better be safe than sorry and make sure this is what is causing her to feel like doo doo before we give her a blood transfusion). We’ll update when we know more.

We’re going to give Rainey a target to shoot for, and there is a cool “Teen Room” on another floor. It has games, a movie theater, etc. No one can go in there unless they are with a patient, so I joked that the second she got out of the ICU, we would keep poking her: “Are you well yet? Are you well yet? Can we go to the game room? Can we go to the game room?” Not sure if we’ll get there today, but we’re going to try.

One thing I forgot to write about was “Snow Pile.” About 20,000 Harley Riders bring by presents to the Children’s Hospital for Christmas. Each kid gets to send one representative down to a room full of toys sorted by ages, genders, etc. Dawn would have gone, but understandably didn’t want to leave Rainey, so I got to go. You get to pick a “shopping buddy,” so instead of all the older folks, I picked the 16 year old totally decked out in Christmas gear, Sky, who was very helpful. Rainey got a whole bag full of stuff, including make-up, nail polish, a blanket, a huge gorilla, and a purse (yes, Aunt Tammy actually picked out a cool purse to the amazement of everyone, including herself).

More later,
Aunt Tammy

8:30 And All Is Well…

We didn’t even get to watch a movie last night because Rainey was out like a light. Her pain was managed pretty well throughout the night.

Our hope is that she has a good day. She has yet to have one of those. Today, she has to walk four times (yesterday she walked twice), do some exercises with her arms and legs, and suck into this thing to help with her collapsed lung. The good news is that Aunt Tammy has the most kick butt DVD Christmas collection, and there is a movie theater in the “Teen Room” that will hopefully provide some incentive. (Check the blog later and we’ll see if we can get her down there with some of you – I know she would love that.)

She has to get an x-ray fairly soon, so we’ll update in a few hours.

- Aunt Tammy