Home at Last

We are finally home! They wanted to keep Ellie for one more day, but we convinced them to let us finish her treatments at home. They were not doing anything there that we can not do at home anyway, except for the cough-assist machine, which will take a while to get ordered. (yay-- another piece of equipment for our small family room) Ellie is still not 100%, but her periods of time without additional oxygen are getting longer. She will stay on oxygen at night for the next 6 weeks just as a preventative and healing measure. We are hoping to get her off of oxygen during the day very soon though. Thanks for all your prayers. Things are still far from perfect, but at least we are all home together!

Not Today

Ellie is doing better-her lungs sound better and we have her down to minimal oxygen. But she is still not well enough to go home. We are hoping we will be able to wean her off of oxygen completely today and then go home tomorrow. We are so ready to go home. The boys are playing video games in the room right now while I take care of Ellie. Adam went to work to try to get some stuff done. He has missed a lot of work this time around. I am not sure how we would survive if he did not have a great employer like Calvin. So, we hope to be discharged tomorrow, or at least Wednesday. No place like home!

Progress is Slow

It is Friday and we are still in the hospital. Ellie's progress has been slow, yet we are thankful she is making some small steps back to being healthy. Status: 1. Wakefulness - Ellie had not opened her eyes much in the last week and a half, but in the last couple days she has had some more wakeful periods. Emily and I connect with Ellie by touch and through her eyes, so we were really missing that connection with her. It has been good for us and her to communicate again. 2. Breathing - Ellie is still wheezy and crackly. She has been receiving several breathing treatments to help open up her lungs and dislodge the fluid trapped in there. She has added another machine to her collection, a cough assist machine. During this illness Ellie has not been coughing productively and that has contributed to the severity of her illness. The cough machine bursts air into her lungs and then pulls it out in order to simulate a typical cough. 3. Diagnosis - The Doctors are calling this illness Bronchiolitis, which is a virus. They don't think that it is pneumonia or RSV. They did also find pseudomonas in her trachea which is a bacteria that isn't terrible in and of itself but combined with everything else she is dealing with it becomes a factor in her overall health. Right now it is a waiting game. Thank you for your prayers and support. We are really looking forward to Ellie being healthy again and returning to normal. --Adam

Back in the Hospital

We're back in the hospital with Ellie. After running a fever for almost a week, and a poor chest x-ray, the doctor thought it would be best to be admitted. Ellie is still sleeping most of the time. Her breathing is really labored and coarse-sounding. They have started the barrage of tests that come with being admitted in the hospital. At this point they are leaning toward bronchiolitis or pneumonia. If it is viral, there is nothing we can do except keep her comfortable and wait it out. The boys have been sick with respiratory colds as well, which is why they are leaning toward bronchiolitis--just a worse form of their cold. We have had strict orders not to let them come visit Ellie since they are unwell. Being in the hospital is like being on vacation ;) I will be able to watch the Tigers lose on the cable TV in Ellie's room rather than listening to them on the radio at home. I just had a tray of gourmet food delivered to the room. We have a great view of the city from our room this time so we can gaze out at the beautiful Spring day. Sounds fun, doesn't it? No, seriously, please pray for us this week because it is really hard to be separated and running around like this. We'll update when and if we know more.

Updates

Sorry it has been so long. We had a long and busy week.Ellie is sick again, or never really got better. She has the same symptoms as last time: fever, labored breathing, oxygen needs. We took her to the doctor but there is not much they can do, since she does not have one of the "major" illnesses (eg pneumonia, RSV, etc). She is back on a precautionary antibiotic (her poor gut ) :( We have increased the breathing treatments as well, though nothing is making an immediate impact. She has not been awake really since Tuesday night. We miss her with her eyes open. 

 

The boys are doing well. They love to wear matching clothes, so this spring I went to Target and just grabbed two of everything they needed.  

This picture was taken right before I took Seth in for his "spring haircut." I'm sorry I don't have an "after" picture. I will work on it and put one up later.Noah lost his first tooth! It was quite exciting for all of us--another sign of him growing up. He put the tooth under the pillow and then mommy and daddy switched it out with two new books for him.Adam's parents are in town for the weekend. They chose a good one, because we have much better weather here than in Chicago this weekend. They were outside with the boys most of the day yesterday, working in the yard.

Home from Cleveland

We met with the neurologist at the Cleveland Clinic today. Emily had her well organized binder of all of Ellie's lab results and reports and even had copies to give the Doctor. I think he was impressed, I know that I was :)

As we had heard several times before Ellie's case is complicated and severe. The Doctor did a physical exam of Ellie and asked us a lot of questions about Ellie and her story. He then collected all of Ellie's reports, labs, and films and went back to his office to digest everything and consult other specialists. Upon returning he described what he thought may be going on with Ellie.

Going to Cleveland we had an idea of what may be going on after a very good meeting with our neurologist at Devos Childrens earlier this week. But we did not share this idea with the neurologist in Cleveland. We didn't want to influence his opinion. When he was describing what he thought might be going on with Ellie, both Emily and I were nodding our heads. He stopped and said, "You have heard this before haven't you?" We acknowledged his hunch and he responded by saying, "You were going to make me work for it weren't you?" Absolutely, no free ride here!

So, the theory today is, that Ellie may have a problem with her peripheral nervous system as opposed to her central nervous system or a muscular dystrophy. The most helpful pieces of the puzzle that helped them to consider this area were her physical exam, MRI and EMG. There are a handful of disorders that could be causing this, all extremely rare. They can be tested for with a blood test, and we hope to pursue that here in Grand Rapids.

The Good thing about Cleveland was that we were able to get a second opinion on Ellie's case. As a bonus, both opinions matched. It also affirmed our confidence in our neurologist here in Grand Rapids, who has taken an interest in Ellie and is deeply invested in her case.

Thank you for all of your prayers and support this week. Cleveland was not an "ah hah" experience, but it was worthwhile, and it confirmed a direction that we were heading. We can already see God's hand in why our original trip to Cleveland was delayed. It is comforting to know that we sit in the palm of His hands and under the protection of His wings.

We will keep you posted as this unfolds.

--Adam

Cleveland Clinic

Tomorrow we have an appointment at Cleveland Clinic in Ohio. We are hoping that this will be a worthwhile trip and that we can learn more about Eleanor's condition. Please pray for us tomorrow morning as we meet with a Neurologist there. This trip may be one meeting or many depending on the outcome of our appointment on Wednesday morning. We will update everyone when we learn more.

Ellie's feeling better

We're so happy to report that Ellie is doing much better. She is pretty much off of oxygen and is acting much more like herself. We have even gone for a few walks around the block in the early spring weather we have been having. We are so happy to be somewhat back to normal.

Home Sweet Home

we are home from the hospital. The pulmonologist said Ellie sounded so much better this morning. She is still weaning down to minimal oxygen, but he is pretty confident she will be able to wean completely off in the next couple of days. He was fine with letting us go home and continue the treatments here.

We are so happy to be home. Thank you for your prayers.

Emily