Sunday, February 22, 2009

Webster Lake

Nothing much to report from here, so that is good news.

We went back to CHB for clinic on Thursday, too. The weather was difficult (heavy rain and moderately heavy traffic), but the visit was uneventful. The echocardiogram still continues to look good and no one seems concerned about Emily's little cough, which has not gotten any worse. Her med levels were perfect so all of the medical aspect appears to be going well. She also gained one pound. We are working on that. Cousin Lisa helped on that front by making a great dinner for us for Weds and Thursday.

The physical therapist put Emily through a pretty hard workout on Thursday. Emily was quite discouraged because she found even the little bit of treadmill quite challenging. She feels like she should be doing what she was able to do with Coach Irion back in the fall. Everyone keeps reminding her she needs to give herself some time since she had a major illness and then major surgery only 3 weeks ago. She has been using Uncle Tom's treadmill to do some walking each day since the weather has either been cold and windy, or rainy (today). We seem to have missed most of the snow that you Queensbury folks have had to deal with. Thanks to Rick who is keeping our driveway plowed.

Friends have brought boxes of movies for us to select from which has been quite fun. Cindy and Fred Johnson-Mettler brought us a box full yesterday and it was great to see them (as well as thier movies).

This still feels like the perfect place to rest and recover. The most exciting thing here is watching the ice fishermen, and with apologies to all you ice fishermen, I can't imagine anything more boring. Tuesday Emily has her second biopsy, and sadly she is looking forward to it as a break from trying to catch up on reading the "Iliad" which she had been doing all week.

Wednesday, February 18, 2009

Emily is Famous

There was an article in the local paper today (the Queensbury Citizen insert to the Post star).

http://www.poststar.com/regions/queensbury/ Click on the link below the picture of the dog with Emily, and also look to the right and the top three article links are about Emily.

We went back to clinic yesterday, and everything appears to be good. The echo looked good and the blood tests were all pretty good. Dr. Singh and Jodi took out some remaining stitches.

They are still adjusting her med doses; they warn us the highest risk of rejection is the first 6 months. But so far, so good. Another visit on Thurs and another biopsy (to look for signs of rejection at the tissue level) in a week. We will continue to go 2x per week for a while, and then go down to once a week. At that point we can decide if we can go all the way home.

Going in and out of Boston yesterday was not too bad. We have to be there early, so we were up at 5, but beat the traffic, and were home for lunch. Other days will not be that fast. Then we all took naps. We have gotten good at napping.

Emily has a little cough, but they said not to worry. They will check on her on Thurs.

Sunday, February 15, 2009

1,000 Paper Cranes


Coach Kristi came to Webster Lake yesterday and brought Emily a gift from the Glens Falls YMCA Gators Swim Team. As you see in the photo, they folded 1,000 paper Cranes. With it they sent a book, signed by all the team. It also explains the significance of the cranes. It tells us that an ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury. The Gators folded a 1,000 cranes for Emily, with the wish that she recover quickly and enjoy a long life of prosperity and happiness.

Each one of the cranes is beautiful, altogether they are amazing. Thank you Gators for this wonderful gift and the effort you put in to show Emily your support. She misses everyone there, and hopes she will be back to help Coach Kristi to start the Long Course season in April.

We are doing well in this beautiful quiet house on Webster Lake. We have been mainly sleeping and reading. It is lovely here.

Thanks again everyone. The Gators and the GF YMCA have been an important part of our our lives for a long time, and your thoughts and support means a lot to us.

Deb, Bob & Emily

(PS -- Brother Jeff had an AWESOME meet at SUNYACs this weekend, doing best times in 400 IM, 200 fly and 200 back. He placed 3rd, 4th and 5th. The team had a spectacular meet, dominating for both the men's and women's team standings)

Friday, February 13, 2009

Safe Haven


Cousin Steve Roberts met us at the Mass Pike exit yesterday and escorted us to his parent's house on Webster Lake. We entered and we felt the tension of the hospital just lifting away. We visited for a short time and heated the dinner that Cousin Lynn had left in the refrigerator. We went to bed early, without checking vitals, slept all night without checking vitals, did not hear any beeping alarms, missed the 6 AM weighing, and got up in time for 7:30 meds. A few more nights like that and we may start to feel normal.

Kathy Gow came by with tons of food that she collected from our friends who contributed to our very own food bank. She took the picture of us with Webster Lake, frozen in the background. We intend to hang out, rest, eat, watch movies, and try to decompress from the tension of the past few weeks, months, and years.

Emily stayed up all morning, ate a big lunch of grilled cheese, apples, and ice cream (she has lost 14 pounds so all the dessert rules are suspended). She's napping now in her quiet, private, lakeside room. Thanks Tom and Nancy for the house--it's perfect.

Bob

Thursday, February 12, 2009

Go!

We're outta here!

Wednesday, February 11, 2009

Get Set

The biopsy procedure went fine today. We went from being the first case to the second, which delayed the whole day. The docs who watched said every thing looked fine with the heart and pressures in the heart. We will not have results from the biopsy for a day or two. She also had a chest x-ray and blood tests. The med levels were good this morning, so that means that we seem to have found a good dose of Prograf for now. Her neck is sore tonight from where the put in the catheter.

So they still say we will be discharged tomorrow. We hope it is true! We can't wait to get out of here. I know that this has been an incredibly fast recovery, but 3 weeks in this hospital has still seemed incredibly long.

For comic relief this afternoon, Bob took a singing greeting card (Thank you Wanda) and he and Emily made a door bell for our "ante-chamber" door with string and surgical tape. It worked for a while, much to everyone's amusement. Then the over-zealous PT staff came in and broke the string. Bummer. They better get us out of here soon, or Bob is going to re-wire the whole place.

Tuesday, February 10, 2009

Get Ready

So they are getting us ready to be discharged. We had med training today. We prepared a 3-page spreadsheet of meds and doses. We collected up some of the meds from a special pharmacy, and ordered some from CVS. We met with a metabolic specialist to review the supplements she is on.

Emily had a so-so day. She still has little appetite and her digestive system is still upset. However, it seems that we are balancing out the meds better, and are zeroing in on a dose for the cardiac meds. There were no headaches today, and her blood pressure was better, too.

Tomorrow is a biopsy, and hopefully discharge on Thursday.

I did laundry. I know you are all proud.

That was weird!

Emily is very good at describing things, and she scored some points with the nurses yesterday in describing the removal of her pacer wires. During her surgery, three wires were pressed into the outside of her heart and passed through her chest to the outside. These "pacer wires" were left so that she could be connected to a pacemaker if her heart needed some regulation. Her new heart hasn't missed a beat so it was time to remove the wires. We were a little apprehensive about removing the wires, since removing the chest tubes last week was very painful and gross.

The nurses said, "we ask all the patients what it feels like and all they say is, 'that was weird!'" So one of her nurses grabbed one of the wires, counted down from three and pulled about 8" of wire out of her chest. Emily yelped, "that was weird!" She said it didn't hurt but was just strange. They proceeded to pull the other two wires with a little squirm from Emily each time.

They asked her to describe it so that they could explain it to other kids. She thought for a few minutes and said, "it's like pulling dental floss through your skin instead of through your gums." The nurses liked that explanation and thanked Emily for the good description.

We're glad to see the pacer wires gone. The only tube left in her is one IV in her arm. That's quite a reduction from the maximum after surgery, which was three chest tubes, three pacer lines, a breathing tube, a stomach tube, a line in her neck, one in her groin, a right atrial tube in her heart, and three peripheral IVs (I may have missed a couple). All these holes are healing, and the stitches that close the wounds will be going soon. She is really over the worst of the surgery, but of course faces a long road adjusting to lifelong medications.

Monday, February 9, 2009

Probably Thursday

The team decided it would be best to stay inpatient through the normal course of waiting to have the first biopsy. That is scheduled for Wednesday, and it is to check the heart tissue for signs of rejection. If the biopsy looks ok, and all else seems stable, we may be discharged on Thursday. We will go to my uncle and aunt's house and come back for our clinic visits. We will hopefully be back in Queensbury in 4 -6 weeks.

It was a busy day with lots of doctor consults, EKG, echocardiogram, removal of pacing wires and even a walk/ride outside in the garden. Emily felt much better today, with better med balance, lower blood pressure, and consequently less headache and upset stomach. The goal was to eat and drink more and she did pretty well, even though she does not have much appetite.

We have kept the GI bug at bay, and our hands are raw from washing and washing. We don't let anyone extra in our room, and we try to touch nothing outside of the room. Emily's tutor came back today and she is scheduled to have an hour a day of tutoring starting tomorrow on the days she feels up to it.

Our day still starts with a 6 am vitals and weigh in. Then some food, and a blood draw at 8. So we try to go to bed early, but we have to have a nurse come in with meds and vital signs at 10.

We had fun opening cards and some packages today. Thanks for all the mail! We have more stuff here now than can fit in the Prius. Hopefully tomorrow will be another good day of healing.

Meds

The tricky part of treatment post-transplant is to set the doses of the anti-rejection meds. THis involves trial and error of dosing and measuring serum levels daily. Emily's surgical recovery has been very smooth. Getting the meds straightened out is taking some work. She is on a lot of meds that will be temporary, some she will be on for the rest of her life. It is very important that the level of the primary antirejection drugs stays at a certain level. Unfortunately, Tachro seems to make Emily's blood pressure go up and gives her headaches and nausea. So we are working at trying to keep food in her and keep her stomach settled while she is taking these drugs and yesterday her blood levels were way too high, making her feel sick.

The other challenge is that there is a nasty GI bug going through the hospital. The staff is being very careful, but by my estimate about half of the nurses were out sick last night. We are being very cautious, staying in our isolated room and not touching anything from the outside world.

The transplant team is meeting this morning. They will review her meds and discharge plan. We'll update the blog later. Rounds on Mondays are late so we won't hear until late morning.

Sunday, February 8, 2009

Air Handling

So here's another one. Bob, my beloved geek of a husband, starts roaming around the room with a strip of toilet paper, testing the breeze, shortly after we moved into this special isolation room on Thursday. He determines that the airflow in the room is negative (sucking air in from the hall), when for an immunosuppressed patient, it should be positive, with the air blowing out when you open the door to keep the germs in the hall. OK, so it seems wrong, so he asks about it and is told, "that is the way it always is." Not a good answer to give Bob. So, long story, but this gets elevated to the level of a hospital policy issue. And, the idiots, believe it or not, on Friday, came and reversed the air flow WHILE WE WERE IN THE ROOM. So the dust in the ducts from 3 years of sick, isolated patients was blown in on us. Another scene for SCRUBS. We have not yet come down with any detectable diseases.

Dr. Blume, who now I think of as Wonder Woman, breezes in here yesterday morning with a box of Dunkin Donuts. The woman is a treasure beyond measure. I only wish someday I could get her to sit still long enough to have a cup of coffee an chat. So we asked her if the air handling issue got up to her, and she lauighed and said, "Are you kidding, it was almost the only thing I did all day yesterday." And she said what the take home lesson is, is that when she is pushing us to leave this place we should listen. She is more worried about Emily getting sick here in this loony bin, than sending her out of here with us.

So at first I had a panic attack (mild) when it was suggested we should be discharged soon (Thursday or Friday or Wednesday or Monday, depending on who you talk to) . Now I understand why Dr. Blume wants us out of here. All we are doing now is adjusting meds, and we can do that out patient. There is a GI bug going around the hospital. The staff are back on precautions with Emily, and wear gloves and gowns in the room (like our photos from the ICU). Bob and I are wearing gloves outside the room.

The problem is that Emily is still adjusting to the meds. Her stomach did not take to the meds this morning and her blood pressure is up and a headache is back. These are normal hiccups in trying to adjust meds post-transplant, but very unpleasant none-the-less. At least the air is blowing in the right direction now. It also helps block out the hall noise.

Saturday, February 7, 2009

One Week

One week ago, at 7 am, our nurse came in and told me that our doctor, Dr. Singh, was on the phone for me at the front desk. It never crossed my mind what the call might be, although I should have known. We were so prepared to be waiting for weeks or months, it did not even cross my mind that this was "THE" call. But, in fact, his calm voice said, "We have a heart for Emily."

All the nurses knew and were standing in a large semi-circle behind the desk, watching me. I told him we were ready, and he told us what we needed to do. He said he'd be here in an hour and a half, and that I could call Bob, but wait to wake up Emily. I have to confess that I shook like a leaf, and the nurses asked if I was ok. I told them I needed coffee.

So on our first week anniversary we are grateful for:

1) the donor and the donor's family
2) Lisa Salberg and the HCMA - when we typed HCM into Google the first day of diagnosis we found all the info we needed, and better yet we found Lisa who got us in to Tufts the next week to see Dr. Maron.
3) Dr. Marty Maron - who saw us the first time as an added last case on a Friday night. he correctly diagnosed a diffiucult case, followed Emily closely and correctly determined when she needed to come to a tranplant center.
4) Dr. Blume and the CHB transplant team.
5) Great nurses and care here
6) health insurance
7) Aunt Susie and Jeff being here for those first days
8) Coffee
9) a private room
10) all of you who are sending your love and support

deb

Blog stats

We have been impressed with how effective this blog has been at communication. We are living in a cell-phone free zone. We can walk out to the elevators and stand and talk in a public place, but that is difficult. The blog has really helped us to stay in touch and we enjoy the comments. Jeff compiled the following statistics last Thursday night:

5,315 pageviews (not counting refreshes when nothing changed)
2,700 visits
685 visitors (supposedly unique, but more matched to unique computers than unique visitors)
Visitors from 33 states and 7 foreign countries
75% of visitors came to the site by typing in the address
and apparently the site was found with yahoo search a handful of times also.

Friday, February 6, 2009

Transplant Surgical Team



The transplant surgery was done here by Dr. John Mayer, and Dr. Ram Emani. Here is Em two days post transplant with Dr. Mayer (photo by Aunt Susie) and on the right with Dr. Emani today (Day 6, photo by me). Dr. Emani said today, again, that they are very pleased how well she is doing. She had a kind of sleepy day. She is trying to make herself eat and walk to keep improving, but we think the pain meds are catching up and and making her sleepy. She has an awful lot of meds on board, and is being weaned off some that are given in hight doses early on. All of these have side effects, but sleepy seems better than headaches. She had a visit with friends today and she did manage to smile with Dr. Emani.

Little Stuff

It is amazing that after a major major event like a heart transplant, it is the little stuff that gets you.

Em's new heart has not missed a beat. Her chest incision is not terribly painful and looks great (thanks Dr. Emani).

But what hurts is the IV lines, the headaches, the nausea from all the meds. I guess these are not small things in the sense that pain is pain. The other thing is that most of these side effects are related to the immuno-suppression and anti-rejection drugs. That part of the treatment is at least as difficult as the surgery, and actually lasts a life time.

OTHER THOUGHTS (from a noisy room at 5 am)
I realized yesterday as we settled into yet another new room, this feels a bit like camping in the midst of high technology. Each day we have an adventure, and many nights we have to set up camp in a new spot. We have to find food, worry about where we will sleep, ration clean clothes, and have a tiny little space to live in. We hoard plastic bags and scraps of paper. That all seem silly when you look out the window and we are in downtown Boston.

Sometimes it feels like this is a strange horror movie where there are patients and medical staff running around doing thier jobs. But in the background, visible with only special 3-d glasses, are zombie-like parents. You see them in the elevators carrying food, in AuBonPain in pajamas and slippers, leaning agains walls using cell phones. They are invisible to the visitors and hospital staff....ok, maybe not a good movie plot.....

Thursday, February 5, 2009

Out of the ICU

You know your viewpoint has narrowed when checking into a cardiac care unit feels like the pressure is lifted. They told us this morning they were going to discharge her right away, and it happened at 4 PM, which is record fast hospital time.

Yesterday ended up with everybody exhausted by four failed attempts at a PICC line, an IV that failed overnight, a reaction to one of the IV meds that caused her arm to look burned, and the other arm still sore from the last failed IV that infiltrated fluid and swelled her arm. The intrusive ENT people determined that a vocal cord was damaged (duh, she sounds like she's been smoking for ten years) but that it would probably heal by itself. She sounds better today and we have vetoed their idea to do "swallow studies." Another bit of hospital speak causes alarms to go off for us; if they say, "don't worry, it's not a big deal," don't believe it. They mean it's not a big deal for them!

Emily woke up in some pain. She realized that a component of the pain yesterday came from her reacting to the pain and having her blood pressure spike to 150/90, which exacerbated the headache. Last week's heart never got her blood pressure above 80/50, so the new heart is putting out more blood than she's ever felt. She consciously calmed herself and managed he pain while waiting for the meds to kick in. Then, in another feat of self-control, her stomach started to turn at a liquid medicine she had to take. She said that she was not going to puke, and she ate a few dry crackers and relaxed and the wave of nausea passed. Then she got up for a walking tour of the floor to keep her circulation and lungs working.

We packed up in the afternoon and waited for our new room to be readied. While Deb and I were out, they told her the room was ready. She got out of bed and walked out of the ICU, but the echocardiogram lady just arrived to do an echo. So two nurses, a lady pushing a cart with all our belongings, and the echo lady and her big equipment followed Emily through the twisting hallways of the 8th floor. Imagine how surprised Deb and I were when we got back to the room and it was empty! We've settled into a private room now and Emily is asleep.

I marvel at this wonderful gift of a new heart, especially when we see the echoes. It is working perfectly, but it must feel a bit worse than Emily does. It went through some type of horrible ordeal in the donor, then spent a few hours in a bucket of icewater, and then it was lovingly placed in a safe new home. Even now, it has no nervous connections to Emily, and it beats away at its default pace of about 95 beats per minute, now knowing how much it is appreciated by us all. Every year millions of people die of heart failure, and only a few thousand get another chance with a heart transplant. Among those, the matches are often not as good. We are sooooo lucky.

Wednesday, February 4, 2009

UpS AND dOWNS

We started out with an annoying IV line that made Em's arm swollen and really hurt this morning. There were lots of people coming in to see Em and telling her how well she looks. There is some concern about her throat, since she is still hoarse. They may have an ENT come look later.

She was told she could go for a walk all the way to 8 East to visit her old roommate. So we marched off with the PT people, almost running to catch up. (Miranda, if you are reading, there are some great floors here for sliding, if we didn't have to wear skid-proof socks). Everyone on 8 East was delighted to see her.

That activity made her tired and she went to rest. When she woke up, she had a very bad headache. At this stage, the new heart is beating hard, and there a lot of meds that have complicated effects. We worked through trying to deal with the headache. It had been decided earlier to try to put in a new PICC line. Unfortunately that did not work (with several tries), and she ended up with a new IV instead. Now she fell asleep after so many proceedures.

Our Nurse today's name was Nick and he was a lot of fun. He worked really hard to help Em with the headache. Tonight is the last night with some of th IV meds, so it is possible that she could go back to 8 East tomorrow. We'll see.

Thanks to the Borgos and the Gatorades for sending a great picture for Em's room. She is always telling everyone about her swimmers. She loved the photo.

Scenes for "Scrubs" TV Show

The purpose of this blog is to chronicle Emily's journey through heart transplant. This includes some stories of the activities around her that influence the experience. I'll include just one of the stories today that if it appeared on the TV show "Scrubs" would seem unbelievable. Now I believe that all those silly hospital antics on TV are based on real experiences.

Emily checked into Bed 24 in the ICU on 8 South after her surgery. Children's Hospital built two new ICU units down the hall in the middle of the ICU, just past Bed 12. Rather than number these new units 26 and 27 and have them in the middle of the floor, they renumbered all the beds above 12. Emily's Bed 24 became Bed 26. They came by and changed the number outside her door on Monday, and then the fun began. The nurses quickly adjusted to the re-numbering. The front desk ladies were sending visitors all over the place but that sorted out too. New numbers went up in minutes, and the operation proceeded like clockwork. The IT guy came in to reboot the computer that monitors vital signs so that it would display the correct bed number on the monitoring station.

After re-booting the computer it went into "Demo mode" and did not display Emily's vitals but insteady showed a hypothetical patient. Deb, Emily, Aunt Susie, and the nurse all understood that the monitor was not displaying real data, but the people monitoring out in the hall thought that her pulse, respiration, blood pressure, atrial line pressure, and other telemetry had crashed. About ten people came rushing in with a cart, EKG, and miscellaneous equipment. They looked at her numbers and started pasting wires on all over. They said her pulse had crashed and they didn't know why. Deb was looking at the strong pulse in her neck and said "she's fine, the monitor is on Demo." The emergency team continued to prepare for her demise while Emily said, "what's going on?" Deb assumed they were putting on backup leads but the team thought she was in distress. Finally Deb spoke up firmly over the crowd and said "the monitor is on Demo; it's not displaying a real patient." Finally the crash cart lady said, "oh" as the light dawned and she relaxed. They were gone as quickly as they came.

The nurse chased away somebody from pharmacy who delivered the wrong meds and our vigilence against the gremlins of the bed numbering continues unabated.

Emily got up and walked around the entire floor this morning, all the way to 8 East. She feels better except that her left hand and arm have swollen up. They pulled an IV to give that hand a rest. It is very sore.

Tuesday, February 3, 2009

Good end to the day


The day started with the hard job of getting the chest tubes out (see below). After a nap, Emily got up and went for her first walk. She was assisted by the physical therapy team and they made it down the hall and back. She worked really hard and accomplished much more than what was expected.

A truly watershed moment came for us when the did an echocardiogram this morning. We have seen many of her echos in the past (there's one at the bottom of this blog) but this one looked different--no thickened septum, no big "nose" protruding into the left ventricle, and most amazingly, when they turned on the Doppler to visualize the blood flow it positively whoooshed through without any regurgitation. We are finally convinced she has a new heart! Emily said about fifty times today, "I had a heart transplant three days ago!"

After sending Jeff back home last night, we had to say goodbye to Aunt Susie this afternoon. Their help has been great and we miss them already.

She had some chicken soup and a little pudding but her digestive system is not back in full swing yet. They took her PCA morphine "patient controlled analgesia" away this afternoon, and the pain got a little ahead of her. She got a shot of morphine that brought it under control, but it makes us realize how much she is coping.

After dinner we had a celebrity visit from Murdena Mills and Dr. Marty Maron from Tufts Medical Center. We were referred to Tufts after the original diagnosis of HCM and Dr. Maron directed her care up until the time he determined that a transplant would be sooner rather than later. That proved to be a difficult and timely decision, as her old heart began to give out very quickly after the referral to Children's. He and Murdena braved the snow and rush hour traffic to come across town to visit, and Emily and her parents were thrilled by the visit. They told her how her courage has been an inspiration to them and to many other people. Thanks, Dr. Marty!

The day is ending with more meds being added to suppress her immune system, another walk, and a much deserved rest. Although she is exhausted, you can see by the picture that her cheeks and lips are rosier than they've been for a long time as her new heart pumps more blood around than she has ever been used to before.

Day 3

She had a pretty good night and a very hard early morning. She slept pretty well, and at about 5, they started to get her ready to take out the tubes draining her chest. This was done with versid, so I am hoping she won't remember it all, but it was very painful. She is sleeping again. Having the tube out will ultimately make her much more comfortable, but she was hurting when she went back to sleep at 7 am. She was very brave, but it is hard to see it hurt so much.

They will continue to add and taper off a variety of meds working on anti-rejection and immunosupression. THey are weaning her off oxygen and the morphine. Without the tubes she will be able to get up an walk more.

Interestingly the heart is still settling in. Without nerve connections, apparently the feedback is very differnet and it adopts its own rythm. The doctors say her heart rate of a 100 is normal for a new heart, and it will settle down a little as it gets used to its new home.

Monday, February 2, 2009

Photo Op in ICU


Here is Emily and her support group (Aunt Susie was taking a well-deserved nap).

Sitting Up




















Emily got up out of bed for the first time. It was exhausting, and pretty hard because of all the tubing she was hooked up to.

Planning on Walking

Some doctors just came in to tell Emily that they'll be taking a few tubes out of her chest, and that they will have her try walking later today. She's had a little bit to drink and tried some jello but that seemed like a lot. She is doing deep breathing exercises to clear her lungs. This makes her cough and hurts, but it is good for her.

The new heart is beating very strongly; she has noticeably more color in her lips and her pulses are strong. They are starting to ramp up the anti-rejection medications.

Sunday, February 1, 2009

Address

Several people asked for the address at Children's.

It is:
Emily SInger
8 East, Cardiology
Children's Hospital Boston
300 Longwood Avenue
Boston, MA 02115

Thanks everyone. Notes and cards are great. We can't have flowers.

24 hours

It has been an amazing 24 hours. She hated having the breathing tube in, and struggled with that all morning. However, about 1:30 they took out the tube, which is amazingly fast. She was really relived and much more comfortable. She really really wants something to drink, but her digestive system is still affected by anesthetic, so she needs to go very slowly. She was able to make some small jokes, and after the tube was out we got some smiles. All of her data show she is doing great; the heart is working fine, and her other systems are strong. In fact, she is a bit of a phenomenon on the ICU; no one can believe she is recovering this fast. Right after they took the breathing tube out of her, a nurse stopped in her tracks, did a double-take, noticed Emily was missing her intubation tube, and asked if Emily really already had it out after less than 24 hours, we responded yes, and the nurse said, "She's a rockstar!"

ALthough recovery is going well, she has a long way to go. Moving hurts, and she needs to keep breathing deeply to keep her lungs working well. They are working on pain management, and being unsedated so early means she is thirsty and hungry and unable to start taking anything. We hope she has a quiet night. Aunt Susie is with her right now, letting us sleep.

Thanks for everyone's support. She really is a superstar, she is working really hard and is one tough kid.


Surgery Went Well

Emily is somewhat awake this morning, and every indication is that the surgery went extremely well. The new heart is "banging" according to one of her surgeons. Her ejection fraction, the measure of how well her heart pumps blood is now 4 times as high as it was previously. She has complained about the breathing tube and said she's hungry and thirsty. We may be on the fast track to get out of the ICU. Will post later...