Posted (Tina) in All Posts on September-9-2008

Well, I’m glad that our pics don’t look too bad, but the sleep hasn’t been that great. Last night, Ella was up more than a few times. Once again, seemed to be having troubles with food intake. It started to make us wonder if it was truly a volume issue or if there is something else bothering her tummy.

The morning feeds were just as dramatic. Ella clearly was telling us that her tummy was hurting. Her heart rate was up between 185-195. Around 11am, she also had a slight fever.

This lasted until early afternoon when a dose of Maalox seemed to calm her tummy and give it some relief. Within 10-15 minutes of dosing it through the g-tube, she was clearly more comfortable. The tummy issues came up not only with feeding but sometimes when she was just laying in her crib.

We did see some fresh blood come up once through the g-tube. We know that the steroids she’s been taking can cause some irritation to the stomach lining. Also, her tummy might be tighter and more sensitive for a bit due to the surgery. At this point, we are not really sure what is causing it, but now have a plan on how to make her more comfortable.

When rounds were completed this morning, Ella showed weight loss from yesterday. Her overall urine output was down. Her BUN came back and it was 10…hmm. They realize that may mean more fluid on board, but feel that the Captopril is beginning to show its impact in that she can tolerate more fluid in her system without it causing her respiratory distress. When Ella had a BUN of 10 before the Captopril, she was in a very bad place. Yet today, she seemed good respiratory-wise except for the tummy troubles.

Along with her tummy troubles, she had a bit more retching and coughing this morning. The retching is different now and almost seemed like pure nausea. It is definitely not the hard core retching that she was doing prior to surgery. Praise God that is better now!

Another medicine added today: Prevacid. Although it will take 3 days to really see the impact, this medicine is intended to assist with Ella’s stomach lining. It should help minimize any belly pain she is experiencing when eating.

They added a thiazide diuretic and a potassium sparing diuretic today. With her current dose of Bumex plus the other two, it will work her kidneys evenly and is better for long term management.

Her blood pressures have been higher than normal. With the Captopril, you would expect them to be lower. So they are thinking that these symptoms are signs of her pain in her belly. But they expect to have to increase her Captopril dosage over the coming days to optimize the impact.

Another great surprise. Josh was telecommuting today and I was thirsty so I asked him to watch Ella for a few minutes while I went downstairs. My timing was great. I walked back into a smelly room. Apparently, Ella had a blowout of diarrhea. Josh had to ask the nurse to help him with clean up. It was everywhere and lots of it! Diarrhea is listed as a side effect of the Captopril, but time will tell.

Throughout the day, we were able to get a few other meds that helped. We started using Mylicon for the gas. As we have experienced before, it doesn’t eliminate or reduce the gas for Ella that much. But during one feed, it did seem to bind the gas bubbles together more, making the venting process easier. It was certainly better than venting 3 separate times for 35 minutes after a feed. Later tonight we tried it again, and it didn’t seem to have much impact. The jury is still out on this one.

So, I just have to share all the meds that Ella took at various dosages today: Captopril, Diamox, Sildenafil, Bumex, Tylenol, Maalox, Mylicon, Prevacid, Hydrothiazide/Spironolactone combo, Multi-vitamin, Reglan, and a Potassium-Chloride Supplement. Wow, so many things…

The rest of the process is really fine tuning and more of an art than science. They will spend the next few days dialing in the Captopril to the correct dosage that is the most effective for Ella. We still have to figure out the feeding/tummy issues, making sure she stools properly, and the art of the diuretics for her long term management.

Now that it has been 36 hours on the Captopril, we are convinced that it is having a positive effect. She doesn’t seem compromised from a respiratory standpoint. And normally going this long without massive amounts of diuretics plus a BUN of 10 would be really, really bad. Also, we decreased her oxygen at 6:30pm to 1 liter and she has been saturating great.

We don’t want to get too excited but feel like they may have figured out “why” Ella is so fluid sensitive. Who would think that it is because her left ventricle in her heart is more narrow and works harder? And that giving her a blood pressure medication would help solve Ella’s fluid issue?

We’re so glad that pulmonary hypertension is such a specialty in the Denver area; we’re so thankful to be surrounded by experts. It was not the place to be for a CDH diagnosis and saving her life, but it is definitely the right place for Ella’s long term care.

At this point, we realize that it may still be several days for all of this to pan out. The earliest timeframe on returning home would be this weekend or early next week, if everything continues to go well.

Thanks for all the support and prayers. You are seeing the evidence in Ella’s smile. Please continue to pray for the doctors wisdom in coming up with the “art” of Ella’s medications to make her feel the best and have the greatest long term impact. Also, pray that Ella continues to get stronger – that we can resolve her tummy issues and that her oxygen requirement will get lower and lower, towards her baseline.

We praise Him for giving the gift of life to Ella. This is such a tough journey, but she is so worth it. She is such a blessing to us and to so many of you. She reminds us each day of our Heavenly Father and brings His truth to our hearts in such a real way.

Isaiah 46:4
I will be your God throughout your lifetime—
until your hair is white with age.
I made you, and I will care for you.
I will carry you along and save you.