Saturday, January 31, 2009

New Heart is Beating

The surgeon just came in, the surgery has gone well so far, they are closing her up. It seems like the new heart is working fine, and is currently beating well without the help of any drugs. We should be able to see her in about an hour.

Heart Transplant

Emily was offered a heart this morning, so there is about a 99% chance that she will be having a heart transplant sometime later this morning or this afternoon. We'll keep this as updated as possible.

Thursday, January 29, 2009

Here for the duration

The transplant team met yesterday morning and it was decided the best plan would be for us to just stay here in the hospital until transplant. That way, Em can stay on the Milrinone, and keep feeling well and be strong for surgery. The doctors are happy with the balance of meds, and very happy with how well she feels. Since she is high on the list, the doctors are optimistic it could be soon, but there is really no way to know. Maybe only weeks to wait, not months.

She is doing pretty well. Yesterday was supposed to be her first day of school with the tutor, which will be 2 hours a day. But, alas, as it was for many of you, it was a snow day at Queensbury, and consequently a snow day here. So instead, she made a painting of a horse on one of the ceiling tiles for the activity room.

So perhaps today will start the tutoring. We are also high on the waiting list for a private room, which is unbelievably helpful in making this scene bearable. We've had three roommates the last three days, and the disruptions make rest very difficult. As a long-term patient we get higher priority for a single. They had a large number of transplants in January, and post-transplant patients all get private rooms. Some of them are going home and some rooms are opening up, according to our spies. Keep your fingers crossed.

Tuesday, January 27, 2009

Settling into a routine at Children's

We are settling into a routine. The Milrinone is making her feel much better. Her lungs are clearing up and her energy level is back to where she was several months ago. However, we are realizing that she should probabl stay on the Milrinone, and the attached pump and IV line, until the transplant. Hopefully that won't be too long.

We are starting to develop a life in the hospital, as opposed to suspending our lives while here. Emily is starting physical therapy, a tutor is coming every day for two hours, and she has "activities" in the activity room. They are bringing a dog in to play with her "pet therapy" and she has charmed all the staff. They still wake her up a few times a night (and her mother) and the PICC line continues to be a hassle (sometimes clogging).

We had some great visits: Lynn, Steve, and Courtney Roberts, Kathie Gow, and John Ogden. Kathie took some pictures that I will try to attach.

Emily qualifies for a "make a wish" and she is thinking of things to wish for her. If anybody has any novel ideas let us know. She has thought of doing a segment on HCM or heart transplants on the Today Show. John Ogden is trying to get olympic gold medalist Ryan Lochte to call. I have suggested that she ask for a new airplane for her family, but that hasn't really gone over well. So comment on the blog if you know her and think of things that might be impossible for her to do otherwise.

We're hanging in and appreciate everybody's support.

Monday, January 26, 2009

Settling into 8 East, with a few hiccups

After the PICC line adventure, we moved into a room on the regular floor. It was a double but we were assured that nobody else would be moved in. That lasted about 3 hours, when a post-surgical girl and her family moved in during the middle of the night. The room is very small with two families. This seems to be a sleep deprivation experiment.

We spent most of yesterday in the "activity room" to give the other family a little space. Emily is feeling much better and her lungs are clearing. One of the docs spent some time with us and thinks that it might be best if we just stay here for at least two weeks. There's little point in going home, having her feel bad again, not being able to go to school, and then having to come back. They think we live too far to go home with the Milrinone pump, but if we find housing nearby we might be able to leave for a time. While on IV meds the likelihood of getting a transplant is much higher.

I left last night shortly after they found out that one of the ports on the PICC line was clogged, probably with clotted blood from a morning blood draw. They were going to soak it with an enzyme, wait two hours, and then try to flush it. That means another sleepless night for Deb and Emily.

Jeff left yesterday for his 11 hour train ride back to Rochester. It was great having him here but somebody has to maintain normalcy.

I am losing my housing today at the Devon Nicole house today, so I need to figure out housing. This place is just short walk from the hospital; the only alternative this close is the Best Western at $170/night, so the logistics are challenging. Also, I told the airport I would leave on Wednesday, but heavy snow is forecast so that isn't happening. It's amazing how busy we can keep ourselves without doing anything.

Thanks to everybody for your support...Bob

Saturday, January 24, 2009

PICC line in, leaving the ICU, we hope

Last night they had a major problem putting the PICC line in. They tried to put it in her upper arm on the left side, but as they threaded it up toward her heart, they ran into the ICD lead. So it was actually very difficult and uncomfortable for Emily, and very scary. In the end they took it out, and re-did it this morning.

Today went a lot better. She was REALLY brave considering what she went through yesterday. She is relaxing now after Panera soup that Jeff went out and got for her. She is listening to her book on tape and we are waiting for a room on 8 East to be able to leave ICU.

She is doing well on the Milrinone, and hopefully this will start the boring part of hanging out with IV meds and waiting a few days on 8 East while they watch her.

Friday, January 23, 2009

In the ICU

We got into the ICU a couple of hours ago, and Emily was started on the Milrinone after she got her second IV. While she didn't like having two IVs it seems like she is feeling a little bit better. Right now she is getting a picc which is a basicly an IV that goes directly into her heart. We expect to be able to leave the ICU in the morning.

Thursday, January 22, 2009

At Children's

Emily and I drove out today, and she was admitted this afternoon. There was not a bed available in the ICU, so they put her in a regular room. Since the Milrinone has to be done in the ICU, they can't do that. Instead they have put her on Lasix, a diuretic, to reduce the fluid on her lungs, and hopefully help the cough. We don't know if she will do the Milrinone this time or not. While she is in here, not on IV Milrinone, she remains status 2 on the waiting list (same as if she were at home).

She is comfortable, and doing ok. She is actually quite boring to be with because she is listening to the second book in the Twilight series on a CD with headphones. She is so absorbed by the book, she won't do anything else.

Bob and Jeff are going to come out tonight in our plane. Bob just picked Jeff up in Rochester, and will be flying into Logan tonight. They are staying in the hotel next door. So we will either see them tonight or in the morning.

Wednesday, January 21, 2009

Going in tomorrow

Emily is feeling pretty crummy, and hasn't had the energy to go to school. So the doctor at Childrens thinks we should come in sooner. She can treat her and make her start feeling a little better. She felt there was no sense in waiting if Emily wanted to come. So we are driving out in the morning. Bob will hopefully be able to pick Jeff up in Rochester, and fly to Boston and meet us. If they can't get her into the ICU to start the IV milrinone, then they will probably give her diuretic to help reduce symptoms.

Friday, January 16, 2009

Scheduled for Admission

Our transplant team has taken another look at Emily's data from her visit yesterday and they have decided Emily should not wait for too long to be admitted and start treatment. She is now scheduled to be admitted on Jan 23 (one week from today). She will be in the ICU for 24-48 hours over the weekend when they start the IV medicine (Milrinone), then inpatient probably for 3 more days. It is possible that she will be released by the 29th or 30th. After the first couple of days she should start feeling better. They also said that the expectation is that if the treatment is successful, she will feel better for a few weeks, and go back to school. Then she will need to go back for another round of the IV meds in the hospital. The intervals between hospital stays will become shorter. Then hopefully, during one of these stays, she will get her new heart.

Thursday, January 15, 2009

January visit to Childrens

We just got back from a monthly trip to Boston. Emily had a blood test, electrocardiogram, echocardiogram, a chest x-ray, and a visit with Dr. Blume and Jodi Elder on the transplant team.

Emily's heart function has taken another nose-dive. Her heart is even more enlarged, and her ejection fraction is down to 20%. That's the percentage of the left ventricular volume that is discharged on each pump. 50-60-% is normal. Last year she was at 45%; she was at 35% in October, so the additional drop is a sign that the decision to list her last month was correct.

She has picked up a cough the last week, and it is related to the heart failure. Her left ventricle is not pumping as much as it should, so the fluid backs up into her lungs. The plan is now to admit her to the hospital next month to put her on a drug called Milrinone. This drug will relax the heart muscle and improve its function, but it must be administered IV in the hospital. There is some risk of cardiac arrhythmia when they first start, so she'll have to spend the first day or two in intensive care. After that it will be just a boring few days. They expect to release her after five days and she will be much better for a while, but the symptoms will come back and hospitalization will be required again.

As explained in a previous entry, while she's in the hospital she moves to the top of the transplant list, so one of these hospital visits is likely to end with transplant surgery. In the meantime, it's back to "normal" for us.

We also want to thank everybody for writing to Blue Cross Blue Shield about their contract negotiations with Tufts. Dr. Maron called us and thanked us, which means a lot to us. Maybe the corporate moguls are listening too.