Posted (Tina) in All Posts on June-27-2010

Well, a lot has happened since the prior post.

Last weekend, it just seemed like the diarrhea was never going to end. All of this continuing with feeding diluted formula (50/50). She is totally losing weight and you just know something isn’t right.

Josh and I decided to give her guts a break and only give Pedialyte on Monday, the day before her Upper GI. We just felt like she needed it. Then, I left a message with her GI doctor to give an update and push for getting an answer to this problem. I planned to touch base again while I was at the hospital, to see if I could get him to look at the images and let me know if he sees anything. Well based on Ella’s symptoms, the GI doc thought that maybe Ella should be admitted to the hospital on Monday when I called (I think that only giving Pedialyte concerned him). I compromised and agreed to touch base after the upper GI on Tuesday, to see if that would give us more answers. If it seemed like Ella needed to be admitted to the hospital, we could walk right over from radiology and make that happen.

So, Ella had her upper GI test last Tuesday. There were a few loops of bowel that looked distended to the radiologist, but no big deal in the opinion of her GI doctor. The main finding: her gastric emptying is good. This is great because we no longer have to take Reglan. But, it usually takes just under 2 hours for barium dye to travel through your small intestine and reach your colon. It took Ella’s system 4 hours. So her motility is definitely slow. Based on her history, we already knew this fact. It just confirmed that it has not changed since her recent surgery.

Unfortunately, this test did not give us any answers on why Ella continues to have diarrhea with mucus and blood on a frequent basis. We’ve still been spending lots of time with round the clock diaper changes, lots of baths and loads of laundry. Since the test did not give us any answers for why we might be seeing these symptoms, we reconvened with her GI doctor once the upper GI completed. First, he wanted to still admit her to the hospital. After we talked through all the info together, we came up with a plan that both of us felt good about executing.

The plan: Ella is being admitted to the hospital tomorrow (Monday, June 28th). Her GI doctor will be on service, meaning that he is the doctor on the GI team that rotates around and treats patients in the hospital with GI issues. Well that works perfect for us – it just makes it easier so we don’t have to re-explain everything. Plus, her pulmonologist has been on vacation. He is going to be back at the hospital tomorrow. It’s funny though – her pulmonologist called in to check on things while he was out. He heard about Ella coming tomorrow and started to put a bunch of things into place. First, he wants her admitted under the pulmonology service. Since Ella’s primary condition is pulmonary hypertension, the pulmonolgy team already knows Ella. They can manage her fluids. Once again, a comfort in not having to explain things over and over. They have all of her history, especially the pulmonology team.

While Ella is in-patient, her GI doctor wants to “scope” her. The procedure is scheduled for Tuesday, June 29th at 12 noon MST. This is where they take a camera and look at the lining of her intestine and colon. In order to do that, they have to put her under anesthesia. This is another reason that her pulmonoligst wants her under that team of care. He put the plan in place to make sure that there is a cardiac anesthesiologist (someone who is trained to watch her pulmonary hypertension more closely). Her pulmonologist is also trying to see if he can schedule a CT scan while Ella is out. This way she won’t move and he could get real good images of her lung tissue. Lastly, they want to do an echo. They want to see if the pressure gradient in her SVC is stable or getting worse than the echo she had in late May. So tonight, we’re packing for a trip to the hospital.

Josh had a great Father’s Day. We just hung out as a family and walked around Cherry Creek. Although Ella had a couple of explosions, it was still nice to be out.

Another outing: we had another CDH family contact us. We’ve been watching each other’s blogs for awhile. This family started reading our blog when they were pregnant and diagnosed with CDH. They were going to be visiting Denver and wanted to meet, so we decided to go to the zoo together. It was a great time visiting with them, sharing stories/experiences, and connecting in person with another CDH family.

It’s definitely summer and it has been nice to have friends over and take advantage of the grill. Just looking at my pictures makes me ready for this meal all over again!

As we’ve mentioned, Ella’s therapies in home through the Early Intervention program are going to end on her third birthday. This means no OT, PT or speech help. It just stinks because Ella really needs it. The only other way that she would get these services is under Medicaid. She has been approved for a Medicaid Waiver and has been on the wait list for 2+ years. The state of Colorado only services a certain number of families based on funds and then they just keep a wait list. So, the only other way to get Ella some help is via the school district. Even then, the school district is going to focus on educational needs, not necessarily the other developmental areas that Ella really needs help with right now (walking, eating, talking, etc.).

So, the Cherry Creek School District came out to evaluate Ella this past Thursday. The nurse collected all the info and got permission for medical disclosures from Ella’s doctor. The rest of the team evaluated her for developmental delays and goals for what it will take for Ella to progress toward being in a school setting. Fortunately, her current Early Intervention Case Manager plus two of Ella’s current therapists came to the meeting and pitched in with their professional opinions. Apparently, they take all this info back to a committee at the district in charge of the home bound schooling program to decide if she qualifies. I’m amazed that being on oxygen, tube feeds, tons of meds on a certain schedule, no ability to even talk or communicate does not qualify a child for limited education in a home setting. It has to be deemed medically necessary that she not be around children in a school setting, in order to be approved for the program. Preschool normally starts here on August 25th, so I’m thinking we may find out the week before. If she does qualify, they will tell us what that looks like. For example, it might even be just a Teacher’s Aide who comes to the house for 1 hour each week.

The biggest piece of news for the West Family: Josh got the full-time job he really wanted. On June 25th, it had been one year since he left his last job. His new job starts this Thursday, July 1st and is very excited about the opportunity. It will be good to have stable income and benefits for the family. Finally as of August 1st, no more COBRA. Although the new PPO insurance is expensive for all of us ($560/mo) and not as good of coverage, it is better than COBRA running out! It will be interesting to see how the policy truly plays out and what is covered and not covered. Only time will tell.

We praise God for Josh’s new job and trust that He has a plan for all that Ella is enduring. We pray for answers to her intestinal issues this week and a short hospital stay.

Philippians 4:6 (NLT)
Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.