Posted (Tina) in All Posts on May-25-2010

Monday morning came too quick. I was up at 6am to administer Ella’s withdrawal medicines and the day started. We had to be at the Children’s Hospital for an 8am appointment with GI.

Before the appointment started, we got a weight – 13.9 kilos. Not too bad considering that she has only been having half of the normal amount of formula for several days. The appointment seemed long – we were there about an hour and a half. The doctor took his time to get a thorough history of Ella. He was real nice and I’m looking forward to working with him although I’m hoping that Ella doesn’t have chronic GI issues.

After discussing everything, we came up with a plan. First, he wanted 3 abdominal xrays. He wants to see where she is at post-surgery. It can also serve as a baseline since the last abdominal xrays they have on file in Denver are not great films (from last February when we stayed for a week due to possible obstruction).

Along with xrays, he ordered 3 types of stool samples. We want to make sure that there is no infection. It could also be that Ella’s intestines are simply not happy yet. He recommended asking pulmonology tomorrow if we can give the potassium supplement in 4 doses per day versus 2 per day. He’s thinking that could be contributing to the loose stools.

Speaking of stools, Ella’s stools are still not normal but the diarrhea stopped a few days ago. The change? Well, I figured out that it was not a volume issue so then I tried diluting the formula. So instead of feeding 8 times per day (125ccs of food, wait 2 hours, then 125ccs of pedialyte, etc, etc,) I’m only feeding 4 times per day but I’m diluting the formula 50/50 with pedialyte (125 ccs of formula plus 125ccs of pedialyte), so she is not getting any formula full strength. Since I made that change, the constant diarrhea stopped. This tells me that it has something to do with the food and her guts. Both times that I’ve held off on formula or diluted it, things seemed to improve. Since they started to improve, the GI doc recommended that I keep up the same plan for another 1-2 days. Then, he wants me to slowly change the ratio of formula and Pedialyte. First, 2/3 formula with the rest pedialyte, then 3/4, then 7/8, then full strength formula. Each change should be 4-5 days apart. From there, work up to an additional 345ccs of free water for a total daily intake of 1345ccs.

The GI doc wants us back for follow-up visits at 4 weeks and 8 weeks. Before we departed, I asked about Lactinex which is a probiotic to help replenish the good bacteria in the intestine. It is over the counter, so insurance did not cover the cost. It runs anywhere from $75 – $90 for a 30-day supply. We went ahead and paid for it from CHOC, but I asked this GI doc if there were any other probiotics that he could recommend. His first though was getting it in the formula: trying Peptamen Jr with Probiotics. If we can’t get that food supplied via Apria, then he gave me a prescription for another probiotic called VSL#3. At least it is not over-the-counter, so it will actually be less money each month.

Speaking of money, this is a true testament to the need for healthcare reform. I’ve explained on earlier posts just how expensive prescriptions were compared to other locations we’ve experienced like CO and FL. Well, I got the hospital bill from CHOC today. See for yourself. Ella was there from 4/8 – 5/9, just past the one month mark.

Do you see those numbers? I’m in complete disbelief. It was 1+million dollars for Ella being in the NICU in Florida – but that was for 6 months. This was 1 month in CA with 1 surgery, not multiple surgeries. The cost is crazy – heck, they even charge $40k+ each day just for administering nitric oxide – a gas – to help control her pulmonary hypertension since her gut was not absorbing the sildenafil. I knew it would be more expensive and costly, but I had no idea it would be that drastic of a difference. I should have known when the sildenafil was 3-4 times the cost. Once again, a clear reason why I could never live in CA. We would hit our lifetime maximum on our insurance policy in no time.

Once we got the abdominal xrays this morning, we returned home to the mess. We took about 4-5 hours yesterday to unload the RV from living in it for nearly 3 months. But all we had the energy to do was bring it inside to our living area and dump it in a big pile. Now, we have lots of unpacking and organizing to do. The good part is that we were able to take the RV back to our storage place and not have to leave it out in front of our house for days.

Around 6:15pm tonight, Ella had a big poop. The consistency was better and it had been about 36 hours since she had a stool. It was very dark, almost black. I’ll spare you the photos, but it was still scary looking. As I put my gloves on, I dreaded the task ahead of me. I had to fish for stool to place in three separate sterile containers as stool samples. Fortunately, Josh was around to help me by holding Ella’s legs in place so I could get that unpleasant task over. The bigger bummer: the stool has to be fresh for the sample (they want you to deliver it within an hour), so we had to drive 30 minutes each way to the hospital to turn in the samples. Too bad that Ella could not have just pooped tomorrow when we are there for cardiology and pulmonology appointments at 10:30am and 1:30pm. That would have been so much more convenient.

One more highlight to our return home this past weekend: On Sunday, we were back to enjoy the annual 2010 Weimfest. Yes, our Weimaraner (va-may-ran-er) joined other similar pooches from the Denver area for a fest of celebration. It was out on the east side of town over country acres where the dogs could roam free and play with each other while owners socialized. They even had fun games for the pooches like bobbing for hot dogs. Pretty cute. It made us realize how petite Lola is for a Weimaraner. And of course, just how pretty she is!

Now, it is Tuesday. We left for the hospital at 10am and finished at 3:45pm. It was a long day.

As a follow-up from yesterday, the nurse from the GI department called back to let me know that the 3 abdominal xrays looked normal. That was good news. The stool samples are still in process but we should hear back shortly on that too.

Our first task at the hospital was an echocardiogram and EKG. Overall, the EKG was fine and the echo looked pretty much the same except that the pressure gradient in her SVC was higher than before. The last echo in Denver, it was 2.5. During an echo at CHOC on 4/27, it was 2.7. Today, it was 3.8. You typically only want it between 2-5. So although it is not alarming, it shows that things are not going in the right direction. Unless we notice any clinical symptoms, we’re planning on returning in 3 months for a follow-up echo to reassess. One other reason to investigate sooner is if we have any problems going off of the Bumex. We have not used Bumex since early Feb 2009 and even then, it was only once every 2 weeks. The fact that we are using Bumex daily is not a good sign and if we continue to keep needing that large dose, it may be indicative of something else.

Next, we went over to pulmonology. It’s always good to see this doctor – he is a major reason that Ella gets such great care in Denver. He understands her so well. After discussing everything that happened at CHOC and reviewing GI and cardiology, we came up with a pulmonology plan. First, we’re going to spread out the doses of potassium chloride. The GI team thinks it might be impacting Ella’s stools and wants to see if we can give her a similar amount, but spread it out more. Pulmonology had no problem with that request so now we are going to give her 3ml, four times per day versus 5.6ml twice per day. Also, the pulmonologist wants to Ella to have all the fluid and nutrients that would be beneficial for her. This means that we will increase Ella’s overall fluid intake to 1345ccs (this is similar to what she had prior to this bowel surgery). Most of it will be diluted formula, pedialyte and free water. Over the coming weeks, we will work with the GI team to phase out pedialyte and get her to full strength formula plus 345ccs of free water. Right now, Ella is only getting 1000ccs so this is an incremental increase of 345ccs of fluid per day. Once she has been taking full volume for 2 days, then we are going to try and wean the Bumex (the normal dose every other day). If we have problems weaning the Bumex and Ella still requires daily doses, we may be headed for a trip to the heart cath lab where they would not only check the SVC stents but also measure the pulmonary pressures. We’re going to follow-up with pulmonology in 3 months for an in-person appointment but manage the details of the Bumex over the phone. And of course, if we notice any clinical signs from Ella we might be investigating or going back to the hospital sooner.

As if we don’t have enough things to contend with already, it appears that eczema might be rearing its ugly head. Around Ella’s lips and especially her hands, it is red and inflamed. We’ve tried regular lotion, hydrocortisone cream, aloe vera. It’s hard because it is her hands which she puts in her mouth all the time, plus the area around her mouth. I just feel bad for her. This is one of the bummer hand-me-downs from her Daddy since he has it too. I’m hoping that it will not get worse.

Please pray for us as a family. Life has been stressful and is taking its toll on us.

James 1:12 (NIV)
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

Ellie Brown on May 26th, 2010 at 5:32 am #

Almost 2 million dollars!!! Do you have to pay the difference I noticed insurance only was billed for about half of it? I have always supported insurance reform. For the sake of children like Ella we need to all get behind making sure health care is available for everyone.

loren lizotte on May 26th, 2010 at 6:02 am #

Great pixes. Good to see you are back in colorado. 2 of my kids have bad eczema, see if you can get some rx wescort its gentle and works fast. I also found that baby oil in gel formula works wonders when added to their bath water

Elizabeth Norman on May 26th, 2010 at 7:44 am #

I am so happy for you that you had that wonderful outing with Lola. After all your stress, that looked like so much fun. We continue keeping you in our prayers.

Kevin Orbaker on May 26th, 2010 at 10:05 am #

This is a job for the media. That is completly unjustfied and excessive. Hope you don’t mind; But there is no way this can go on. We don’t need health insurance reform, we need medical regulations. Seriously the feds regulate everything now. Why would they allow this?

Kern Sutton on May 26th, 2010 at 10:43 am #

I feel for you all – our son Max had issues at birth and was in NICU here in NorCal… nothing like your journey so far, but enough to help me understand how tough & loving you guys must be!
Try Lush products for the eczema – Dream Wash for the bath and Dream Cream for after. Clears up our daughter’s eczema well. Also organically sourced vitamin E oil. Watch out for drug interactions from anything Rx… and check to help reduce her environmental toxins exposures.
Congratulations on your strong beautiful girl!

Jill E G on May 26th, 2010 at 9:05 pm #

Just wanted to let you know you guys are in my prayers. Hang in there!

Jim and Char Snyder-Jordan on May 27th, 2010 at 9:51 am #

Bless you all for a good rest and improved health all around.
Love you, Char and Jim

megan on May 27th, 2010 at 8:07 pm #

Doodlebug I am so glad that you are back in Denver and sorry I didn’t get to see you and Mommy when you came. I miss you bunches and you are in my prayers! Love you guys!

Shayneh Starks on May 27th, 2010 at 9:25 pm #

the only cream my dermatologist recommends (and that works) for me and my girls’ eczema is the tub of cetaphil. The thick thick cream in the tub, sold at costco. when the rashes are bad enough to be scabby, only a prescription steroid cream will do. once the prescription heals the rash, using the cetaphil cream each day after bathing will prevent future rashes.

Julie's friend Lynn on May 28th, 2010 at 7:27 am #

I’m glad to see you’re quoting James. It’s my favorite book of the Bible for hard times.

Could colloidal oatmeal baths help Bun get more comfortable?

Sara Allen on May 28th, 2010 at 2:30 pm #

you continue to be in our prayers. I must say, I had to crack up over the idea of convenient poopin! Sure would be nice. Is there such a thing? You are amazing parents. May God grant you the grace you need each moment.

Tara Hayes on June 2nd, 2010 at 8:39 pm #

Prayed for your family tonight. Sweet dreams!

Amber Redman on June 4th, 2010 at 9:22 am #

Hi, my daughter was born 07/25/07 with RCDH and at 18 months had a complete bowel obstruction. My family is in the military and we will be relocating to Colorado Springs in October, and I was hoping, if you have any time to spare, you could answer some questions for me. Thank you 🙂

The Brittain Family on June 7th, 2010 at 9:13 am #

Thinking of you and saying a prayer with love

Dana and Lauren on June 8th, 2010 at 10:20 pm #

Just had not heard anything from you all in a while and thinking about you. Hopefully things are smoothing out and even the dog is feeling better! Will be missing you at NAA at the end of the month.

Laura Marold on June 9th, 2010 at 8:04 am #

You two are such wonderful parents. Ella is so lucky to have you. Your understanding of her health problems is truly inspiring. I don’t think I would be capable of learning all that you both have learned just to keep her well. I know this is so difficult for both of you and I keep you both in my prayers. She needs you both so, so much. Much love, Laura M.

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