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!!

Not going to be a short, quick stay!

As you can see, baby Abigail doesn't look sick at all.

Today during rounds with the doctors:
*2nd blood culture came back positive again (some sort of infection in blood)
* no change in the blood clot

Impression: possible infection (endocarditis) of the heart or infection in her blood clot or just in blood in general

Plan: antibiotics for 10-14 days. If they come to the conclusion that the infection is in heart or clot they will do six weeks of antibiotics. Repeat blood cultures everyday until negative.

Summary for the day:
She got a successful IV( for antibiotics) today started in interventional radiology on the first try!! Woo Hoo!! Hopefully it lasts. Once blood cultures negative, possibly place another PICC line.
She had an echocardiogram of the heart to look for signs of endocarditis. They did not see any signs, but they say it doesn't always show up. Not sure how they will be able to come up with a definte diagnosis. They finally got the Lovenox level they have been trying to get for weeks now. The level was low (non-therapeutic) . So now they will increase her dose. They are pleased that there is no growth of clot. Will remain a 3 month treatment. ( Her poor legs and arms are already bruised, with knots). She is on three high dose antibiotics, lovenox, baby asprin, and enalapril). She continues to eat well, and you would ever know that there are germs setting up house in her little body.

Well, that is it for now..... start your prayers back up!! We enjoyed being at home much better.
Brother Jackson is sick too... tested positive for strep throat. Possible source of her infection

Back to TCH!

Well, not excited to writing about our new stay at Texas Children's Hospital!!Yesterday we went to our regular pediatrician appt for hr 2 month shots. Abigail weighs 9 lbs. 2 oz. and 21 in. long. They took her temperature on forehead- 100.6. Bad mother that I am, I hadn't noticed. So not shots for us yesterday. The pedi notified the cardiologist. We were instructed to go to TCH- ER. All because of a low grade temp.

While we spent 8 hours in the ER, we had blood cultures drawn, CBC, chem 7, chest x-ray, EKG, flu test, and to top things off a spinal tap! Her white blood cell count was elevated (23, a sign of infection). Flu test negative, spinal tap negative for meningitis. About 12am last night we were transferred to the cardiology floor to hopefully just stay overnight.

So update from today.... 24 hours has turned into 72 or more hours!! Lucky us!! No fever since she was admitted. Blood cultures initially have come back positive which equals need for IV and antibiotics. They say the sample could possibly be contaminated, so they drew another sample today. We had 5 different tries today for an IV by " the best", " the experts", " the people who never miss".... NONE were successful, surprise!!! So after many discussions, they have decided to give her antibiotic orally. She went for another ultrasound of her blood clot... still waiting to hear any results. So for now thats it. Just hard to be the one to watch her go through this torture all over again. Lets hope this stay is much shorter than the last.

Brother Jackson at home today also with a fever. So maybe we are just dealing with a little virus. Need my kids to be healthy!!

I am planning my return to work on July 5th!! Exciting huh?!?! Any takers on babysitters, need a little baby love, got the baby fever and your husband not willing?? Just going to be working once during the week and one day on the weekend.

I will keep you all updated!!

Doing GREAT at home!

Abigail is weighing in at 8 lbs. 10 oz. now!! Eating and growing well. We have had no problems since we have been home. Thank the Lord! We have had many doctors appts in last two weeks. Cardiology last Friday. They did an echo cardiogram of heart (GOOD), EKG (GOOD), chest x-ray (GOOD), blood pressures (GOOD). Her oxygen saturation's have been within the normal range for her.We return for another visit on Friday. We had Hematology appt on Friday also, with the intent of drawing blood for a Lovenox level. Not surprising that they only tortured her not to get their sample. (Remember, they had difficult time while in the hospital drawing blood). We returned today for them to try again. Tried twice, unsuccessful. Plan to try again on Friday. It makes me so angry to watch them hurt her over and over. We went to Audiologist today to re-check her hearing test. She had failed the test in the left ear previously. Today we passed in both ears, YEAH!! These doc appts keeping me busy!

Abigail is a good sleeper during the night. She is letting me sleep 4-6 hours at a time. This is great because in the hospital they made us wake her up every 3 hours regardless to feed.

Big Brother, Jackson, is doing awesome!! Has had no problems with the new addition to our home. He is actually great with her, very caring, and very helpful. He talks about how her heart was fixed, asks if she's okay. Randomly goes up to her and talks to her, pats her head, tells her he loves her, gives her her pacifier. It's so sweet!

So overall, things are great in the Rorick household. Sorry its been so long since an update.... but, not too much to say lately since she doing so well. Her next surgery date is still undetermined. They say typically between age 3 mon- 6mon, but sometimes up to 9 mon. Just depends on how she does in the weeks and months coming up.