Surgery scheduled for 9/17

Picture of HRHS (Hypoplastic Right Heart) with Pulmonary Atresia

(Abigail's heart condition)

Picture of the Glenn Shunt Procedure

Well we received the news yesterday that they would rather do her next surgery (the Glenn Shunt) sooner than later. So the BIG day is planned for Sept 17th. As they have told us many times before, nothing is set in stone.... if for some reason it becomes more urgent they will do it sooner. Or if something more urgent comes up for someone else she could get bumped. They have also talked about enlarging some valve (not sure which one, cause they really haven't said) with the next surgery also. They think too much blood is accumulating in the right atrium and it is kind of backing up, too much blood flow to the liver and bowel. They think that this affecting her appetite which= her poor eating habits and difficulty gaining weight. They placed a NG (nasogastric/ feeding tube) down her nose last night. Anything she doesnt eat by the bottle will go down that. Hoping to "bulk" her up before surgery. I guess that means for 3 wks... and she has already pulled it out once. But doing well in hospital. Gained weight today, yeah!

Just a copy and paste of the Glenn Shunt Proceure (which is done open heart) and description of HRHS....ope this helps explain stuff.

Glenn shunt: A surgical operation for children born with cyanotic heart disease ("blue babies"), in which a large vein (the superior vena cava) is anastomosed (connected) to the right pulmonary artery so that blood bypasses the malformed right chambers of the heart and is shunted directly into the lungs to be oxygenated.

What is hypoplastic right heart syndrome (HRHS)?

Hypoplastic Right Heart Syndrome (HRHS) is a condition that is even more rare than Hypoplastic Left Heart Syndrome (HLHS). HRHS refers to the underdevelopment of the right side structures of the heart, which means that the chambers, valves and related blood vessels on the right side of the heart are malformed. This malformation involves the pulmonary valve atresia which has not formed, a very small right ventricle, a small tricuspid valve and a small hypoplastic pulmonary artery. As the ventricle has failed to grow and develop the ventricles muscle structure is poor, so additional problems are encountered as the heart attempts to pump blood to the pulmonary valve for transfer to the lungs. The proper amount of blood pumped from the right atrium is not sufficient and this causes the blood to be not pumped efficiently to the lungs.

Main Problem:
Pulmonary valve atresia which is absent is a valve that normally opens and closes to let blood flow to the pulmonary artery.

Secondary Problems
A very small (hypoplastic) right ventricle is the lower chamber which normally pumps blood to the lungs,
A small tricuspid valve which is the valve that allows blood to flow into the right ventricle
A small (hypoplastic) pulmonary artery.
The blood flow into the coronary arteries may be abnormal causing damage to the heart muscle

Post Cardiac Cath/ Hospitalization

Just thought I would update you all on Abigail's status.
So, Abigails cardiac catherization went great. Dr. Matthew Crystal was her interventional cardiologist. He became our hero. In the previous cath they had seen that her Right coronary arterty was closed off, not making the connection needed to supply blood flow to her heart muscle. Increasing her risk of sudden complications. During the cath on Thursday, August 20th, Dr. Crystal said that her right coronary artery is open and the connection is made to her heart. That is WONDERFUL news!! It was unexpected news, but we were excited to get it. Otherwise they did not report that there were any other new changes or problems with the heart. We did have to stay over night, but was discharged home on Friday AM.

Abigail remained very sleepy throughout the day on Friday from the anesthesia. Saturday she became extra fussy and was not eating well. I called Cardiology to report this, they requested us to go to the ER at TCH. So we spent about 5 hours for Abigail to poop, eat, and get an EKG before we were discharged home.

The next couple of days she continued to be a poor eater, she was losing weight, and continued being fussy. We were sent back to the ER on Tuesday afternoon to be re-admitted back to the cardiology floor, where we are at this time.

So, the update since arrival....
Had a cardiac echocardiogram on Wed...- they say no significant changes noted, which is a good thing.
All the lab work they have done has been fine.
After talking to the docs today in rounds, they are concerned with her poor feeding and weight loss, really having no explanation to why. They said they will give her through the weekend to improve before trying more extraordinary methods . They did mention nasogastric tube (NG tube through nose) for feeds possibly if she doesn't get better. Trust me, that I will fight against that one. But the goal in mind.... gain weight, be a chunky little girl for her next surgery, to which they seem to think the bigger, the better, the healthier= better recovery. I anticipate the next surery in the next month, maybe two.

I do think she is eating better since admission and is less fussy, overall very happy. She has lost weight in the last week.

Abigail did have an ultrasound of her blood clot last week. I met with the hematologists today. After 4 months of twice a day Lovenox shots.... there is no change or decrease in the clot. So the plan with that.... stop the Lovenox. I'm so glad Abigail will no longer have to go thru the shots everyday. She will just probably always have the clot. They will continue to follow her care.

So thats about it for now. I will try to keep you all updated since we are stuck back in this prison.

Cardiac Cath Tomorrow

Things are going good for us at home right now... been home for 3 weeks now! Yeah!! Abigail is eating better, gaining weight (11 lbs 6 oz).

Today she had a follow up ultrasound for her blood clot, no news on that yet. Have appt next week for results, along with the FEARED lovenox level. I expect the blood clot to still be there. There is a chance it will never go away.

TOMORROW... another BIG day for Abigail. She is having her 2nd Cardiac Cath done. This is required before the 2nd surgery. I think they measure the pressures in the heart and just look at the anatomy of the heart to be well prepared for surgery #2. Still no plans for that at this point, don't really know what will be the deciding factor. The bigger she is the better, so a few more months at home would be great!!

Thanks again to all of the Abigail supporters out there. Glad to have you in our lives!!

DISCHARGE PLANNED FOR TUES JULY 28TH

We are on track to be going home on Tuesday,YEAH!! We are on day 40 of 43.

Abigail will be 110 days old on Tuesday... she will have spent 87 of those 110 days in the hospital and only 23 at home.

Sorry to not update the blog more frequently, but not too much to say. Things are going well. Abigail weighs 10 lb 5 oz as of this AM. She is still having difficulties eating well. One day is good, the next not so great. We gain weight, then we lose. WE get in trouble frequently for that. But I sure do try hard everyday to make her eat.

Health update: So this week... Abigail had a cardiac echo: results were fine. She had another doppler/ ultrasound of her blood clot. 3 months of lovenox shots twice a day and the blood clot is still there, no bigger, no smaller. So they plan to continue the Lovenox for another month and then re-evaluate. They say that sometimes the clots never go away.

We plan to go home on the Lovenox twice a day, Enalapril (blood pressure med) twice a day, Asprin once a day, Vitamin once a day, and Corn Oil ( yeah, gross like veggie oil, for extra calories) once a day.

Plan for next surgery: No specific day planned, they " think" it will be sometime around 5 or 6 months old. It just depends on her. We hope to get a little time at home.

Family report: I have gone back to work as much as I can, hard to juggle sitters, taking and picking up Jack, Nathan's work (Financial Advisor: for any of you people that NEED "life insurance, college savings plans or your kids, help with investments... he is only one phone call away!!)

Jackson is doing great. He has spent many nights and days with me at the hospital. He has done very well with our stay here. He thinks the hospital is the coolest place. He sure does love his baby sister. He is very caring. He is currently working on his potty training skills.

Thanks: I have to say thank you to everyone who has helped us so much! The people that have given their time to help with Jack, sit with Abigail, bring me food/ snacks/ dinner, provide me company at hospital, help around my house, gave donations, sent flowers, or just offered their help in whatever way we need. You know who you are, and I'll never forget these acts of kindness. I owe so many of you! Wouldn't be were we are now (especially with a smile on my face) if it wasn't for all of you AWESOME friends and family!! Thanks a million!!

June 29th

We are at week 2 of our 6 wk stay.... I can't imagine 4 more weeks in this joint. The days are long and lonely. Visitors are welcome anytime (hint, hint). They are the highlights of my day. Abigail is doing good. Unfortunate that we are here only to receive antibiotics. She really isn't sick. They just want to make sure the "infection" is really gone this time. Not much really to say.... Jack spent the day with me and Abigail last friday. We played in the toy room, painted , rode cars, etc. We had a great day together. Me and Nathan attended a conference held by Its My Heart on congenital heart defects on Saturday. I'm just happy to say there i not much to report at this time.

Please pray for Abbey, Ben and their family. They lost their precious little girl, Emma, on Saturday June 27th.

6 week stay!

Well, just got the news today that they intend on keeping her in the hospital for 6 weeks. They do not think she has endocarditis, but the treatment course will be the same. The 1st two cultures came back positive for enterococcus faecalis (same bacteria from previous hospital stay). They last 2 blood cultures are remaining negative at this point. They suspect that the infection has been hanging out either in her shunt (which is a foriegn object to body) or her blood clot. Both places would have difficulty getting rid of infection. They intend to keep her on IV antibiotics for 6 weeks, and long term oral antibiotics to keep it suppressed.
My heart sunk when I heard this news. Hate living life out of a suitcase and trying to manage time with both kids and husband. And most of all, them just messing with her all the time. They plan to place a PICC line on Monday.
Overall she is doing great, eating well, gaining weight, and looking cute!!