Posted (Tina) in All Posts on June-30-2010

Last night around midnight and again this morning at 8am, Ella had two large diapers filled with blood. The amount was substantial, so they did another CBC and got a blood type and cross, in case she needed a blood transfusion. This required two sticks this morning around 10am. Otherwise, she seemed comfortable and was behaving normally, but they just wanted to make sure that she was not losing too much blood between the procedure yesterday and the aftermath. The likely cause of the extra bleeding is the blood thinners she is taking these days.

Most of the day was casual and simply in a waiting mode. She spent the day on IV fluids and horsed around in her crib in-between restful naps and video watching.

Finally, Ella’s biopsy results came back this afternoon around 5pm. The GI doctor was a bit surprised – he was thinking that the biopsies would be 100% clear. But, one came back with positive results: Eosinophils.

So, what exactly are Eosinophils (ee-oh-sin-oh-fillz)? They are white blood cells that help the body fight certain infections. Eosinophils are most commonly associated with allergic diseases. Eosinophilic gastrointestinal disorders are chronic digestive system disorders in which eosinophils are found in higher than normal amounts in areas of the digestive tract. These disorders typically occur in three areas: in the esophagus — eosinophilic esophagitis; in the stomach and small intestine — called eosinophilic gastroenteritis; and in the large intestine — eosinophilic colitis. Endoscopy and biopsy is the only way to confirm the diagnosis of EGID.

Her blood work from yesterday and today shows an elevated amount of Eosinophils intravascularly. The biopsy shows an unusually high amount of these white blood cells concentrated in her colon. They could be there for a few reasons and it takes a bit of trial and error to attempt to figure it out.

It might be that she is allergic to a food or medicine that she has been taking. We don’t tend to think it is an allergy to medicines because she has been on all the same meds. The only exception is the narcotics – methadone and ativan. We mentioned those to the GI doc, but he confirmed that those would not be tied to elevated levels of Eosinophilis in the colon.

We changed food in February of this year – we’ve tried Nutren Jr prior to surgery and both Nutren Jr & Peptamen Jr since surgery. Both of these are medically formulated foods for toddlers and children that have GI issues, but they are made from pre-digested (hydrolyzed) proteins. Generally, these are partially hydrolyzed casein or whey proteins (from cow’s milk) and are considered easier to digest. But sometimes a stricter diet – an elemental diet – is needed. An elemental diet means no protein, either in its whole or incomplete (pre-digested or hydrolyzed) form. Special elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.

In the past, Ella was using EleCare from Sept 2008 – January 2010. EleCare is an amino-acid-based, hypoallergenic formula that is a completely elemental formula – everything is broken down already so the gut is not having to work hard. Interestingly enough, when I went to EleCare’s website, they phrase it this way:

The body needs protein for growth and maintenance of tissue. But some children are allergic to food protein, cannot thoroughly digest protein, or cannot absorb enough overall nutrition. Instead of whole or broken down proteins, Elecare is made of free amino acids — the building blocks of protein — and can help provide the nutrients needed for growth. EleCare (also known as an elemental formula) is specially designed for infants and children with food allergies, eosinophilic gastrointestinal disorders (EGID), short bowel syndrome (SBS), or malabsorption.

In other words, one theory might be that she is allergic or cannot tolerate foods like Nutren Jr and Peptamen Jr that do not have the proteins completely broken down. Maybe the irritation in the colon started way back in February, surgery just exacerbated the issue and once surgery was complete, we’ve seen all these GI issues with food. To see if maybe this is simply a food issue related to allergies and Eosinophilis, we are switching to EleCare tonight and going to give Ella her first feed and keep her on the IV fluids (in case she does get diarrhea). We’ll see how she does. The GI doctor stated that it might take 3-4 days to determine if she will tolerate the food, if it will eliminate the diarrhea and ultimately reduce the inflammation in the colon. This seems like it would be one of the easiest things that it might be although the long term impacts of only being able to eat elemental foods is not a fun thought.

The GI doc mentioned that it would be rare but maybe she has a parasite. This is another cause of elevated Eosinophils. They check this with a blood draw and stool samples. It has to be sent to an outside lab and takes 8 days to resolve. Finally since EGID is typically tied to allergies, they want to consult an allergist and do skin pricks and patch testing to see if/what might be causing an allergic reaction.

If we go for 3-4 days and the diarrhea/GI issues do not resolve, then we might have to try a round of steroids for several days to see if that treats the issue. If steroids don’t resolve the issue, then we may have to go home on TPN and Lipids for parenteral nutrition.

We’ll see how the next couple of days go with her on full EleCare feeds. Maybe if she does really well, we can go home and manage the remainder of the tests and other things on an outpatient basis? In some ways, that would be good simply because her doctor will not be on service next week. So as we go and try to resolve this, we will have another doctor driving the process. What we do know right now: there is still a lot of mystery and so we’re not sure how long we’ll be here.

Also, the real kicker: these are just the issues that might be tied to the confirmed biopsy results. Remember that there are still dilated loops of bowel in her small intestine where the surgery was performed. The tests we used cannot reach into that portion of her intestine to look at the lining and biopsy that area. This is why we are going to try and treat for the condition that we know we have in the colon. If that doesn’t work and eliminate all her symptoms, then it might just be that small intestine is truly causing the all the problems. This is why the parenteral nutrition would be used: to give the guts a complete rest and hopefully heal.

Praying for smooth sailing with the EleCare and a restful night of sleep. Also, tomorrow is Josh’s first day at his new job. We pray for a successful start to this new chapter.

UPDATE @ 10:30pm: Well, I fed Ella her first round of EleCare. About 30 minutes later, the nurse came in the room because her monitor showed her heart rate elevated in the 170’s, even as high as 185. I explained that it was probably due to the food. We usually see her heart rate elevate a little bit. I agreed with her – it did seem high. Then, about 15 minutes later the noise came. Gurgling diarrhea. I got up and paged the nurse so she could come and retrieve the stool sample and help me clean up. It was pure water with some mucous and blood. Very similar to what we see at home when we give food. Then, Ella was in a good amount of pain. She was crying and barely consolable for about 15 minutes. Once it passed, she seemed fine.

Well, I guess just changing the food isn’t going to do the trick. Since that didn’t go very well, maybe we’ll be starting steroids earlier than 3-4 days. Also, Josh and I still think that something might be wrong with her small intestine near the surgical site, especially considering the timing of the diarrhea once we feed her. If things continue on this path, maybe the TPN and Lipids with complete bowel rest is just what Ella needs. Please pray for discernment for us and the doctors as we make these decisions.

Psalm 33:22 (NLT)
Let your unfailing love surround us, Lord,
for our hope is in you alone.

Posted (Tina) in All Posts on June-29-2010

It has been an eventful 24 hours for Ella.

Last night, the doctors wanted a set of labs as a baseline before her procedure. The night shift tried, but they were unsuccessful (after jabbing around several times). We were not up for more of that activity, so we just put our foot down and told them to wait until the AM.

The main reason for coming to the hospital before the procedure was for them to empty out her intestines adequately. So starting around 6pm yesterday, they started giving Pedialyte and Miralax every 2 hours. Amazingly, she had only 2 rounds of diarrhea that night. And for some reason, she was still up and partying at 1am – standing up in the crib and babbling. She finally retired at 1:30am and I followed shortly thereafter.

I fully expected to be woken up several times to diarrhea. After all, the nurse was coming in every 2 hours and giving more Pedialyte and Miralax. But no more diarrhea output. By morning, they decided that if she had not gone adequately by 11am, they were going to order an enema to help move things along. Apparently when they prep you for a colonoscopy, the output has to be clear (you have to really clean out your system so they can see with the camera).

This morning, they stopped the Pedialyte and Miralax by 8am in preparation for the procedures later in the day. Around 11am, the charge nurse was successful on the 2nd attempt to get labs. All her electrolytes came back looking good, including her potassium at 3.8 (we’ve been giving a potassium supplement 4x/day since we left CHOC, so its good to know it has been working). They wanted to get an IV in her before all her procedures started to avoid any dehydration. But since we could tell that she was doing fine along with it being such a challenge to place an IV, that is where the advocating started this morning. I pushed to see if they would wait until her procedure – why not have the anesthesiologist place it once Ella was sedated? Finally, they conceded to wait until she was sedated.

They took her down to get her CT scan first. Ella enjoyed her wagon ride downstairs.

They let us go into the room and the anesthesiologist had her inhale bubble gum scented gasses that put her out. They wanted her sedated for the CT scan so they could get real good pictures and to ensure that she would be still. The last time she had a chest CT scan was in the NICU when Dr. Kays was trying to figure out and resolve her chylothorax. Her current pulmonologist wanted to take a look at her lung tissue. Before they left the CT area, the nurses needed to get an IV placed for access. Later, they reported that it took 30 minutes just to place the IV with 5 attempts (it is a bummer that it is in the crook of her right arm, opposite side of her elbow). We’re so glad that we pushed for her to get the IV under sedation. At that time, they also gathered a CBC which showed all good levels and a slightly elevated white cell count. This goes along with the recent stool sample that tested high for white cell count. Once again, just another marker of inflammation and unhappiness in the intestine.

From the CT scan room, they took her over to the GI area for her endoscopy and colonoscopy. So they took about an hour and went down through her esophagus, stomach and the upper part of the small intestine. Then, they went through her bum and looked at her colon and a portion of her large intestine.

Unfortunately, the area of real concern is in the small intestine where the surgery took place and it is not accessible with this procedure. The great news: everything else looks good in the lining of her intestine. Nothing looked scary or questionable to the naked eye. While they were there and she was sedated, they went ahead and biopsed from all the areas. The biopsy results should be back by tomorrow afternoon. That will confirm that there is nothing wrong with Ella from a disease standpoint.

If you’re curious, you can click on each thumbnail to see pictures of Ella’s intestines! The one that is interesting: the second thumbnail and the far picture on the right, you can see her g-tube!

As the documents reference, the images are “normal”, so this begs the question: what is wrong? Since they can’t look at the portion of the small intestine that seems to be inflamed and angry, there are many theories as to what might be wrong. Is it bacterial overgrowth? Is it still healing from the adhesions? Is there not enough blood flow getting to that part of the intestine? Is the intestine simply uncoordinated? In other words, her intestines worked on the obstruction for a long time. They were used to contracting like a muscle in a certain way. Now that there is no blockage, the muscle can be uncoordinated and not work effectively. Is all of this just a chronic GI issue from having a bowel obstruction and surgery?

If the biopsies come back with a diagnosis, we’ll start with treating for that diagnosis and it will explain the mucus and blood in the stool. If the biopsies all come back normal, then it is highly likely that we may simply have a chronic GI issue. It might just mean that Ella needs more time for her bowels to heal and function in a more normal way. This could result in giving her guts almost complete bowel rest while still giving her nourishment.

Yep, there is a chance that parenteral nutrition (PN) is in our future. For those of you who do not know, parenteral nutrition is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas containing salts, glucose, amino acids, lipids and added vitamins. It is called total parenteral nutrition (TPN) when no food is given by other routes. As we learned in the NICU, TPN and lipids are like burgers and salad.

“Parenteral nutrition is provided when the gastrointestinal tract is nonfunctional because of an interruption in its continuity or because its absorptive capacity is impaired. It has been used for comatose patients, although enteral feeding is usually preferable, and less prone to complications. Indications: TPN may be the only feasible option for patients who do not have a functioning GI tract or who have disorders requiring complete bowel rest, such as the following: Some stages of Crohn’s disease or ulcerative colitis, bowel obstruction, certain pediatric GI disorders, e.g., congenital GI anomalies, prolonged diarrhea regardless of its cause, or short bowel syndrome due to surgery (The Merck Manual, 2008). ~ Wikipedia

We would go this route to help her gain weight, nourish her adequately and give her intestines a true break. After all, she’s lost 3 pounds from the diarrhea and not being able to take full feeds. Along with TPN and lipids via intravenous access, we would use minimal amounts of food via her g-tube with the food pump and slowly over time (months), work up to her guts tolerating food again. It may even mean using or trying a different food again.

So tonight, Ella has had some discomfort since the procedure. To minimize pain, they gave a one time dose of morphine. I’ve heard her with a rough cough a few times (from being intubated). By far, the main discomfort has been gas. When they do a colonoscopy and endoscopy, they fill the intestines with air. Before finishing the procedure, they try to minimize air by suctioning at the end, but it is never all eliminated. So as time marches on and she passes gas, she is feeling better. They did notice an anal fissure right inside her rectum which could be a cause of bleeding we’ve seen in her diapers. Plus, they did biopsy in several areas so she did have one diaper this evening that was filled with pinkish fluid. But of course, even with discomfort, she is still Ella. In those moments when she is not feeling any pain, she is standing up in her crib, smiling and being her silly self.

Until tomorrow, she is just on IV fluids. We’re hoping to get biopsy reports tomorrow afternoon that support what her GI doctor saw today with the naked eye. From there, we will need a meeting of the minds to determine the next best steps for the Bun. It will likely include some form of intestinal rehab.

Thanks for all the continued prayers for Ella. They are so appreciated during this time.

Here’s an excerpt from my devotional reading:

If we have completely entrusted something to God, we must keep our hands off of it. He can guard it better than we can, and He does not need our help. “Be still before the LORD and wait patiently for him” (Psalm 37:7).

Things in our lives may seem to be going all wrong, but God knows our circumstances better than we do, And He will work at the perfect moment, if we will completely trust Him to work in His own way and His own time. Often there is nothing as godly as inactivity on our part, or nothing as harmful as restless working, for God has promised to work His sovereign will….It is such a comfort to drop the entanglements and perplexities of life into God’s hands and leave them there.”

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.

Posted (Tina) in All Posts on June-16-2010

We went for the barium enema on Monday morning. I wish that was the only test we needed to diagnose Ella’s intestinal issues, but it looks like 1 or more tests are likely in our future.

The test was torture. Mostly because it is not comfortable for any toddler to get an enema, but this toddler also does not understand and is tormented by ongoing medical procedures she’s had in her short life. She cried and cried the whole time. Ideally, it takes maybe 5-10 minutes. Ours took nearly 30 minutes. Why? Because this is Ella and nothing ever seems to go by the book with her. So the normal barium enema did not work because she simply clamped down and tried to push this foreign object out of her butt. And along with it, the barium dye. So, then they had to get resourceful but since it was not planned, it took them awhile to come up with the idea and get all the appropriate tools they needed. They ended up using a foley catheter to place up her butt and filled the balloon with the barium dye. And of course, she is naked and screaming on the table the whole time while a stranger is holding down her legs, they are taping foreign objects into her already-tender toosh. I had to hold her arms up and she was looking at me, screaming for me to save her. She doesn’t realize that I’m trying to save her by having this test done. I guess that experience summarizes a feeling that all parents have throughout this journey called parenthood: doing what you know is best for your child, their temporary comfort aside. Gee, that sounds awfully spiritual too. Maybe God deals with us the same way?

The radiologist noted that he was looking for her cecum, which is considered the beginning of the large intestine. Normally, it is on the left hand side and is easily detected. Because Ella’s intestines are malrotated and did not develop normally, hers might be in a completely different location. We were looking on the right hand of the screen and watching the barium dye, but it would stop at a point. He promised to look at any prior studies of her in the computer and see if he could verify that was her cecum on the right side. Either way, he showed me how we were unable to get any dye past this particular point, which seemed a bit strange. With that in mind, he noted that this test would not preclude having the Upper GI which will send the barium through her g-tube and small intestine.

Yesterday was such a nice and warm day in Denver that I decided it was time to get outside. We walked around the outdoor mall for a bit and Ella seemed to enjoy it. Then, I pinged a good friend to see if she was up for the spontaneous get together. The good news: it worked out. I dropped off Lola to Grandpa’s house for a couple of hours to play with his dogs and we met at a different outdoor mall. It was enjoyable except that Ella’s diarrhea has not stopped…it’s still here. So once we stopped walking around in the heat and went inside to get a soda and relax, I lifted Ella out of her stroller and it was everywhere! That meant a 10-15 minute trip to the public restroom to clean her and the stroller, change clothes, soak/scrub stains from clothes. Then later, Josh and I met up to have some time outside as a family (he was already out and about too). Later, it happened two more times. So although I enjoyed being out of the house, I definitely paid the price by dealing with diarrhea on the run (pun intended). It was even more messy and unpleasant to deal with since I didn’t have all my tools with me.

So instead of going outside today and smelling the flowers, we are staying inside and pretending to be flowers (this cute headband was a gift from Aunt Marla, one of her favorite nurses in the NICU).

Psalm 103:13 (NIV)
As a father has compassion on his children,
so the LORD has compassion on those who fear him

The Bun watching videos

Ella being a goofball

The Bun playing with her baby

Ella smiling at the hippo that Maeve gifted recently

Posted (Tina) in All Posts on June-13-2010

We were able to get in a visit from some old friends today. It’s so good to see people. I know that sounds simple, but when you have been living a sequestered life, just visiting with friends is huge for us. They were headed in our direction and stopped by for an hour or so on the way to another engagement. After making sure everyone was healthy, we all hung out and visited. Their little girl, Maeve, who just turned 2 years old is adorable. I think my favorite part was her wanting to look around the house for the cat as well as trying to articulate “Lola”, but it sounded like she was saying hello in Spanish (“hola”). Speaking of Lola, she seems to be feeling better and more like herself these days.

And the famous question…how’s Ella? It’s been a rough week for the Bun. Her GI system is not responding favorably. As a matter of fact, since we’ve seen the GI doc last Monday, she has been moving in the wrong direction. We’ve had sleepless nights, lots of changed diapers, soiled clothes, blankets and lots of baths. Diaper changes are frequent and the consistency is from one extreme to the other including mucus and more blood. It just isn’t getting better.

Last weekend, we could tell it wasn’t getting better so we backed down to 1/2 strength with 1/2 pedialyte. At the same time, we ran out of Lactinex (probiotic) but the GI doc wanted us to try Peptamen Jr with Prebio. That part is nice and convenient because the priobiotic food is already mixed into the liquid formula, but then things became worse. After 4 days, we thought it might be the new food. She did seem more uncomfortable. So as of yesterday, we switched back to regular Peptamen Jr and spent the money for a new priobiotic called VSL#3 ($65 for a 10 day supply). This is the probiotic that her doc told us to use if she did not tolerate the Peptamen Jr with Prebio or our insurance was not able to provide the food. Even though it is pricey, she is just having such a hard time with her intestines that we felt giving the probiotic was a necessary step. Hopefully, it helps her guts feel more comfortable.

The first GI test is this Monday – the barium enema. It almost seems like the tests can’t come soon enough. I wish we could do them both on Monday, but they have to be conducted separately at least by a few days, but he prefers a week. The second test is not scheduled until the 22nd. The process just feels like it is dragging along. I’m planning on touching base and leaving a message for him tomorrow, to give an update. We’ll see if the plan changes at all.

It’s kind of depressing because we thought that we invested all this time and effort by having to go through surgery and the hospitalization. Now, we’re having daily issues with her GI system. I guess I thought that it would get better after surgery, especially with more than two months under our belt. But it isn’t and honestly, it is depressing. I’m only having to do the clean up from the mess. I can’t imagine how Ella feels. We calculated as of 8pm tonight, we had 12 diaper changes today (there were 6 just between 3pm and 7:30pm).

Please pray that we’ll be able to figure out what is going on with her guts (even with just the barium enema tomorrow), that she will begin to tolerate feeds and feel better soon.

1 Corinthians 13:6-7 (NIV)
Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

Posted (Tina) in All Posts on June-9-2010

I know, I’m completely guilty of not sending any updates lately. I wish I could tell you that it has all been smooth sailing. We are still definitely dealing with some issues, mostly GI related but we’ve had some other great highlights too.

Let’s start with the more fun stuff. We decided that it was summer and the time to take some more calculated risks, so we’ve started attending church together as a family. We’re going on Saturday nights when it is less busy and we can sit off in the corner of the large sanctuary with Ella and her stroller. We’ve done this twice now and it’s worked pretty well. We’ll see what happens as she ages – I’m not sure she’ll stay quiet enough. But we have really missed this part of our lives and felt it was time to start again. We just hope and pray that Ella does not catch any infections! One thing is for sure: she does not have any stranger anxiety with the youth pastor – as a matter of fact, she LOVES him!

Josh has started his job hunt again since we’ve been home and he is very excited for a specific opportunity. The in-person interview is this Friday – please pray that it goes well. It’s been nearly a year of unemployment and we really need medical insurance. COBRA has sustained us, but it is expensive and it will run out. With bills like you saw last post from just CHOC along with all her daily expenses, insurance is a really important part of our survival. But finding a new opportunity is a key part of our family survival too – financially and emotionally. Please pray that this opportunity will go through and if it’s not the right one, that something even better is around the corner.

Ella has been doing great in many areas. We had a 6 month review with all her therapists and the Early Intervention program to update her file, and she met all the goals that we came up with for her 6 months ago. And the biggest surprise: even though we were gone for 2.5 months and she was hospitalized for a good month of it, she did not regress. All the therapists were pleasantly surprised with the advances that she has made recently. Part of this evidence is in the bumps and bruises since we arrived home. She has been roaming and trying out different things with her crawling and balance. The bruises seem a bit worse and more exaggerated because of the blood thinners, but we’ll take them as a good sign of Ella’s mobility and willingness to try new things. The PT even had Ella trying to climb up and down the stairs at the last session. I can’t even imagine when that really starts.

One project we worked on this week: getting pictures with words of many of her toys, placing them in plastic bins around her play area and trying to get her to touch the picture with her hand to get the object. Again, trying to make some forward progress in the communication realm with the idea that eventually she could point to pictures to tell us and others what she needs/wants.

We’re still dealing with narcotic withdrawal symptoms. At times, it seems like more neurological signs: blinking alot, squinting eyes, making funny faces, stretching her jaw funny and just acting like she’s had a few too many beers. Both the methadone and ativan are being weaned. Her pediatrician does think that many of these ticks could be coming out while we’re weaning the narcotics. If this continues once those are out of her system, we may have an MRI in our future.

Pulmonary-wise, Ella has been making good progress. She is stable on 1 liter and we have been able to wean the Bumex to every other day. We’re in contact with the pulmonologist and hope to wean even further as the days progress. Although her latest echo showed a higher pressure gradient in her SVC, one thing we’ll be looking to see is if we can wean the Bumex and get back to where we were before surgery…which was no Bumex. We don’t want to stay on the Bumex too much longer either because last time it caused nephrocalcinosis on her kidneys (excess calcium deposited into the kidneys) and the deposits already formed usually cannot be eliminated. Nephrocalcinosis can lead to kidney stones and acute/chronic kidney failure. Pray that she’ll be successful as we wean the Bumex.

We were finally able to see Ella’s pediatrician on Monday. We caught him up on all the latest medical happenings with the Bun. He recommended Aquaphor around Ella’s lips when the exzema breaks out because it can provide a true barrier to her saliva which is probably breaking down the skin further. Also, he’s calling in a prescription for Desonide which is a mild steroid cream that is safe to use 2x/day and around her face and hands. Apparently, this one is safe enough even if she ingests a little and will help with the skin conditions when they arise.

Also, he was not too concerned with the lump in her neck. As he suspected, it is her lymph node and the bump that has appeared can stay for months or years. He noted that kids can have them up until they are 7 or 8 years old. As long as it is rubbery and moves around, does not get larger, show redness or becomes painful for Ella, it is no big deal. That was reassuring.

We also discussed how food has been challenging the past couple of weeks. We’ve gone from 1/2 Peptamen Jr and 1/2 Pedialyte. We made it to 2/3 strength and 1/3 Pedialyte. Progress halted at that point. When we went to try 3/4 strength and 1/4 Pedialyte for about 4-5 days, we had increased fussiness and food intolerance. At the same time, we ran out of probiotic, Lactinex. Since it is over the counter and costs about $90/month, we asked the GI doc if there were any other solutions. He recommended Peptamen Jr with Prebio because that way the probioitic agent is directly in the food. We just started that on Sunday and ran into other problems again: loose stools and discomfort. We’ve tried to isolate and determine if it is truly the food or not and we’re still in the process of making that call. Right now, we’re trying to see if she can tolerate the new food at 1/2 strength. We’ll really be able to tell over the next few days.

Last Thursday, we rec’d a phone call from the GI doctor’s office. Ella’s stool samples had come back and instead of having a follow-up appointment at 4 weeks, they wanted one sooner. The nurse was not able to give me a bunch of info – I just knew that it couldn’t be great news. When you call to make a regular appointment, you’re told 4-6 weeks. If it was Thursday and the doctor was finding time to see us Monday, there had to be a good reason. When I asked the nurse about the stool samples, a few came back negative. These are the tests that would indicate infection. Unfortunately, one came back positive: lactoferrin. Lacto-what? I asked her to spell it out for me so I could research on my own before the appointment. This is a marker for intestinal inflammation. Many times it can be a marker for IBD (inflammatory bowel disease) and a cause for further investigation.

Fortunately when we saw the GI doctor this past Monday, he did not mention being concerned about IBD. But he did note that this is not something that usually comes back positive when there is no infection present and it means that there is a part of her intestine that is inflamed and not happy. I asked if it was possible that her intestine was still just healing from surgery. He noted that her intestines are still healing, but a kiddo that has had surgery 2 months ago would not normally return a positive result for elevated lactoferrin. So, we just need to figure out what is going on with her intestines. The GI doctor explained that many times there can be adhesions from surgery or a kink and there is not enough blood flow getting to part of her intestine. The elevated lactoferrin levels along with the fact that we have not been able to successfully increase feeds leads him to believe that there is likely something going on. So he ordered two more tests to be done over the next couple of weeks: a barium enema and a upper GI small bowel series. They will insert contrast from her butt and g-tube (two separate appointments one week apart) and take pictures every 30 minutes or so for 2-3 hours to assess the function of her intestines until the contrast moves through from one end to the other. If there is nothing evident on these tests, then they will provide a good baseline and it might mean that we just have to be extra easy on her intestines and go through intestinal rehab related to feeds. If not, it could even be another partial obstruction.

I know that there are some other details, but those are the major ones coming to mind. Please pray for Ella’s health and her progress forward with feeds, weaning narcotics and Bumex. Also that Josh will do amazing at his job interview this Friday.

Matthew 6:25-34 (NIV)
Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.