Hospital Monday

Ellie is doing a little better today. Her Wheezing has decreased and she has been weened a little bit off of oxygen. It looks like we will still be here for at least another 24 hours. The Dr. would like to see her completely weened off O2 if possible and observe her a little longer. Actually I am starting to get used to the stiff board feeling of a hospital couch. :)

Ellie was also tested for Cystic Fibrosis today and we are waiting on those results. She was also tested for some different bugs, including RSV. Those came back negative.

I will keep you posted. Thanks for your encouragement and prayers.

--Adam

Ellie Hospital Update Sunday

There hasn't been much improvement yet for Ellie. She is still requiring oxygen and continues to be wheezy.

Pulmonologist Update: This morning they did a chest X-ray and found a pocket of "stuff" on one side (not Pneumonia). So they are continuing with treatments to relieve the constriction and inflammation so that she can breathe more easily.

The trach swab did come back as Staph. Apparently it is not uncommon for kids with trachs, but it is the better one of the two strands if you are going to have it.

Still planning on being here for a couple more days at the least.

Thank you for your prayers and words of encouragement.

--Adam

Ellie Hospital Update

Today we met with the pulmonologist to talk about Ellie's condition. At this point we are at the theory stage in which there is no real concrete answers. Some of the standard tests were done to check for infection, blood gas, electrolytes, etc.

Ellie is still a bit wheezy and cannot breath on room air by herself. She has had good awake times today, and seems to be comfortable.

So far they have found an increased white blood count from a trach swab, but no organism identified.

They have also noticed an increased level of "I can't remember or pronounce the name" which happens when someone has an allergic reaction.

The pulmonologist thinks that it could be an asthma like condition with an allergic source but is unsure. So the course of action at this point is more symptom focused in an attempt to get her off of oxygen and on to room air. This consists of breathing treatments.

So at this point this is all we really know -- which isn't much -- and it looks like we will be here for a couple more days so far.

Thank you for your prayers, keep it up. We trust in God for all things and know he has Ellie in his hands.

--Adam

Ellie in the Hospital

Ellie has been on oxygen for almost the last 3 weeks. Now that she is healthy we assumed that she should have returned to her normal self without oxygen. Well we were obviously wrong. Ellie has now been admitted to the hospital to be evaluated by a pulmonologist (respiratory doctor) . We are not thrilled about being in the hospital but it was the only way to get to the bottom of this. Otherwise we would have been waiting a while to get in to see a pulmonologist.

So I am here in the hospital with Ellie and we may be here for a couple days.

Please pray that Ellie doesn't get sick here.

Please pray that we can figure out this O2 problem.

I will check in with updates as things progress.

--Adam

Update

We are all feeling better. The sickness was limited to Adam, Seth and me. Noah was able to stay healthy and spent the day and night with my parents having fun and missing out on the action.

We are disappointed to have to cancel the appointment in Cleveland, but surely God has his reasons. We will be able to reschedule for some time in April.

Ellie also missed out on the stomach bug so that is good. She is still on oxygen pretty much full time, but otherwise is quite stable. She is going in tomorrow morning for fitting for her hearing aids. We are not sure if we will be getting the actual aids tomorrow or if there will need to be adjustments made. We can't wait to try them out!

thanks for the prayers-
Emily

Prayer Request-updated

Seth also came down with the stomach bug so it appears it will move through the family. We have decided to postpone the trip. We are praying they will be able to reschedule soon!

Prayers Needed

Well, this was supposed to be a happy post about how we are packed up and ready to leave for Cleveland. That is still true, but the bad news is that I came down with the stomach flu tonight after coming home from a party. I could really use your prayers that this is just a 6-hour bug and that the journey would not be horrible. Please pray that I would still be able to meet with the doctor with Adam and Ellie. We are leaving at 6 am on Wednesday morning. The appointment is at 1 pm.

Prayers are also needed for the visit with the doctor, that we could glean some information about Ellie's condition and maybe even have a glimpse into our future.

We will be staying at the Ronald McDonald house. It seems like it is a really nice place to stay and we're so grateful that they had a room available. They do have wireless, so we will make sure to update after the appointment, provided we aren't both lying in bed sick!

Thanks everyone!

Leaving on a Jet Plane...

Adam took off for an IT Conference on Sunday. He will spend the week in Salt Lake City learning a bunch of interesting stuff about computers. Back on the home front, we are having an exciting week for the boys: they get to go to a friend's house to play, to a hotel with grandpa and grandma, and a special day at meijer gardens with mommy and friends. I was able to rearrange some of the nursing schedule for the week, so I have a nurse coming for two mornings to help out.

Eleanor is pretty much the same. She has two little teeth poking out of her bottom gums. She is growing well--up to 13 lb 9 oz and the 10th percentile. We are not sure why she continues to need oxygen, but are praying that she will be able to do without it soon. We are praying that it is not going to be a permanent fixture for her.

Plans for Cleveland are falling into place. I spent all day yesterday on the phone with doctor's offices and insurance people, but I am pretty sure things are moving in the right direction. I will be glad when that business is all done and we have prior authorization secured.

Ellie Update

I'm sorry for the delay in updating. I know you have been praying and wondering how Ellie is doing.

Things have not changed a lot since I last updated. Ellie continues to need oxygen on and off, more on than off unfortunately. We took her for another check-up at the pediatrician who was concerned that things had not improved. The main goal for us and for our doctor is keeping Ellie out of the hospital. She said that it is good that Ellie continues to fight off whatever the virus is, but it is concerning that she has not kicked it yet. So, we left the office with an additional antibiotic that should kick this thing once and for all, as well as some breathing treatments that will open the airways and allow her to breathe easier.

So, we added another piece of equipment and three new medications to our already exciting regimen. We are nervous that Ellie continues to need these additional helps, but are relieved that she has not had to be admitted yet.

Yesterday was also a big day because we took Ellie for her MRI. It went off without a hitch. We also had some blood drawn for additional testing, which did not go as well, but we are glad that is done.

The big news is that we will be headed to Cleveland on March 26! They were able to make the referral much quicker than all had thought, so we hope to know more about Ellie's condition yet this month.

Thanks for the prayers--I will try to keep a bit more updated as things settle down around here.

Ellie and Oxygen

A disappointing post to make. Sunday night, when Ellie woke up from her nap, she was really warm with a fever. We were able to reduce the fever with damp cloths and a little tylenol, but she was having a fair bit of difficulty keeping her O2 saturations at a good level. We had to use some of our emergency oxygen for about an hour. After she slept well that night, we hoped that would be the extent of it, but when she needed more oxygen the next morning, we made a visit to the doctor.

The good news is that her chest x-ray came back clear, so there is no pneumonia, but she does have an ear infection. They gave her an antibiotic for her ears. The only explanation for the oxygen is just that she has a weakened immune and respiratory system due to her neurological issues, so a virus can cause respiratory distress. Since she is still requiring 02 on and off, we had to have home O2 set up at the house. So, we now have a huge tank of oxygen to add to our hospital ward, and Ellie continues to need a boost of oxygen on and off.

We are so thankful that she is not seriously ill, but we are confused and disappointed at this sudden need for oxygen. Please pray for Ellie.

Ellie's first trip outside

The nice sunshine and "warmer" temps drew us outside with Ellie for the first time. Obviously, she has been outside before, but only in her carseat with blankets covering every exposure to the air. So, truly, this is the first time she has had a chance to look around and check out the great outdoors. We hope it will be the first of many days we can enjoy outside as a family.