Another cut and paste job

I apologize again for the cut and paste, but I wanted to update everyone about Ethan. This is from our care page posting, and I am going to bed soon!

I need to start out by saying how extremely thankful we are for all the prayers that have been offered in our behalf today. Through all the fasting, prayers, and thoughts, I was able to feel some peace today and we actually got some answers. We still have a ways to go, but we are now on the right track I believe. We are so blessed with our fantastic families that always jump in when we need them to! I have been touched so much by everyone. Thanking you just doesn’t seem like nearly enough!

Are you waiting for the answers yet?

I e-mailed Ethan’s cardiologist last night. We are so blessed to have him as Ethan’s doctor! I can e-mail him and usually get a response back that same day. He is truly a great doctor! He helped put my mind at ease some when he said that it doesn’t sound like Ethan’s heart is the problem. He said that if it was Ethan’s heart, he wouldn’t have the energy he has now!

On to today…last night I had also e-mailed our friendly NP from the vent team just letting her know of what had happened last night after hours. She called me this morning and said that she felt we should just bring Ethan to the ER at U of M and it was finally time to get down to the bottom of this. So, like good parents, we took Ethan to Ann Arbor and spent the day there. Ethan finally got the ultrasound done of the lumps on his neck. The preliminary verdict is that they are just groups of blood vessels. The theory is that when we tried to take away some of his diuretic, the fluid just backed up and it is showing up in his neck. Ethan got another whammo dose of Lasix in the ER and he will get one more dose tomorrow. His pulmonologist thinks that he is retaining fluid in his lungs and that is why his oxygen levels are lower than normal. It seems so simple, but yet so complicated.

The other theory that cardiology threw out at us was that “something is blocked somewhere.” We are to give the meds and watch Ethan. If the lumps do not disappear within the next week, Ethan will probably have to undergo more testing, like and MRI or something similar. Out of all of this, we have more questions, but we finally seem to have some answers too! Weylin, Ethan, and his nurse are heading to Ann Arbor again for a fun-filled day of appointments on Thursday! I am a little sad that I am missing the appointments, but it will be good for Weylin to do! Ethan will have an echo and see his cardiologist, see his vent team, and have his yearly check-up with the nephrologist.

Again, we appreciate every single prayer offered for us!

Bad Blog Slacker...

So, it has been a long time since I have written on the blog. I just wanted to ask for prayers for our family in this tough time. Ethan has been throwing us for a loop and came up with some mysterious lumps on his neck. Nobody seems to know what they are yet, and this is so stressful on me. This is a copy of what I have posted on our carepage today.

I am going to attempt to get through this. I am not going to lie, it has been a long and emotionally exhausting day for me. The problem that I wrote about last, about the mysterious lumps on Ethan’s neck, still has not resolved at all. They are the exact same as they were last week. This is very concerning to us and Ethan’s nurses still. I feel like I have been on the phone all day today, and last Friday, about this trying to get someone to see things the way we see them! Like I said before, patience is not a strong point for me, so I was on the phone A LOT!

Let’s start with the weekend…Ethan seemed to be doing better, or so I thought. His heart rate was coming down, which is always a good sign! We had attempted to take away one of the doses of his diuretic, but we had to add that back in over the weekend. I held such high hopes that this would help, but it has only helped him not wake up with swollen eyes. We did as we were told and watched him over the weekend closely. He was his happy, sassy self all weekend!

Today…I got report from Ethan’s night nurse that his oxygen saturation was 95% nearly all night long. For all you non-medical people—this is a good number, but it’s just not Ethan! We have instructions from Ethan’s pulmonary team to start giving him oxygen when his levels drop below 93%. Today he was flirting with that during his nap. We even tried putting Ethan on the vent for his nap and it didn’t bring up his oxygen either. Soooo, off to the doctor we went again! This doctor we saw thinks that Ethan’s problems are linked to his SVC Syndrome and suggested that we go see Ethan’s cardiologist this week. He even threw out words like congestive heart failure…yeah, I am really freaked out right now and have shed many tears. We will be seeing Ethan’s cardiologist sometime this week or next Monday.

Sorry if this doesn’t make a whole lot of sense. My mind is about to shut down right now. We are having a family fast for Ethan tomorrow. If you are able to, feel free to join in! I am so blessed to have the family I do! They keep me going when I feel like I can’t anymore and they listen to me blubber on the phone. I am so very blessed! If you get a chance, please say a quick prayer for our family, and for Ethan’s caregivers so they may have guidance about this matter. Thank you from the bottom of our hearts.

A very special day

Two years ago today our miracle child came home to live with us after spending over 220 days in the hospital! Where has the time gone? I really can't believe that Ethan has been home for 2 whole years now! When I reflect upon all that he has accomplished it amazes me! He went from being a child that did pretty much nothing, who laid on a blanket on the floor on his boppy on the vent and on oxygen! Now, today, he is walking and talking and is on the vent, without oxygen, only while he sleeps. We cannot keep this child still even while sleeping!

It makes me sad to think that only half of all parents that have a child born with a congenital diaphragmatic hernia even get the chance to bring their children home. The odds aren't good at all. Please spread awareness in honor of Ethan about this birth defect so that others may be made aware and research may go forward. More and more families need to be able to write updates like this!

What a blessed two years we have had at home as a family of four and we hope to have many, many more!!

Where do I begin?

I promised on another site that I would try to update the blog today! I didn't know what I was getting myself into! We have been busy this summer trying to do many family activities and enjoying it as much as we can! Last summer Ethan was on the vent 24/7 and this summer he is only on the vent while he sleeps! He has made such great progress, which leaves the options for our activities a lot more open! Since it has been almost two months since I updated, I'll start with what we did in June...

It wasn't the best month for me! I ended up severely spraining my ankle, and no, I don't have a good story to tell about it! It has been almost two months and it still bothers me at times. Yes, I did a really good job! This happened as we took a break at a family member's house from our first real family bike ride. It started off as a great night! We loved getting out and Ethan tolerated the ride pretty well!

Weylin decided to take a week off work while I had my long stretch of time off work. We made plans to go away for an overnight family vacay. Since we were already heading to Ann Arbor to see one of Ethan's doctors, we just went a little farther after that appointment and went to Sandusky , Ohio to the Great Wolf Lodge. Bryce and Weylin had a blast! It was fun for me, but I had just sprained my ankle 4 days before leaving...yeah that was good timing!!! Ethan, well he has some sensory issues and he really didn't care for the water park. He also ended up getting sick the night we were there. We ended up leaving early the next day to take him back to the ER at U of M. It is never a dull moment with Ethan!

We also got to spend a day with our good friends, the Bakers. We met them at U of M and one of their children was born with CDH just like Ethan was. We miss them dearly and love getting together with them! Bryce and Zane always have a blast when they are together. We always get a little worried when Noah and Ethan get together, just out of fear for what medical mystery they may plan next for us!

Last, but not least for June, Weylin and I celebrated our 9 year anniversary! Ethan was kind enough to help us spend it away from home, and he helped us get reservations at the Ronald McDonald House in Ann Arbor! (This is a joke between Weylin and I!) I am so blessed to have Weylin as my husband! I love him dearly for everything that he is to me!

Stay tuned for July's updates...and if you're lucky some pictures too!!!!!!

Family brag session...

We'll start with Weylin this time. He is crazy as ever! Gotta love him...I sure do! There is no doubt in my mind that we were meant to be together! He is so lighthearted and is so good for me! He has been working very hard at karate and has finally earned his green belt! I now have 2 green belts in the house. I feel safe and protected more than ever now! We are very blessed that Weylin has survived yet another round of job cuts through the State of Michigan! The biggest cuts have yet to come in October when the fiscal year starts, so keep us in your prayers for that! Weylin carries our benefits, so we really need to keep this job!

Bryce just finished 2nd grade on Thursday. Where does the time go? I cannot believe that my baby is such a big boy now! He is such an awesome reader! He finished the whole Harry Potter series this school year! My biggest challenge will be trying to keep him entertained this summer! Thank heavens there is a park within walking distance of our house! Bryce always seems to have some energy to get rid of! He loves the show Wipeout! The best part of the show is watching it with him and listening to him laugh!

As for me, not much is going on. I am still working part-time nights--only 2 nights a week. As anywhere else, some nights are better than others, but I am just thankful to have a job in this economy! I got a bike and I am so excited! Listen to me, just like a little kid! It has seriously been forever since I have ridden a bike! Now our whole family has bikes, and we have a little carrier for Ethan too! We are looking forward to long bike rides as a family this summer!

And now for the biggest news! Ethan is WALKING!!!!!!!! On Thursday he just decided to take off and walk across the living room and he hasn't stopped since then! We have waited for this day for soooo long! It almost makes me cry just thinking about all that Ethan has accomplished! I was talking with another CDH mom about giving her our Boppy and it brought back such vivid memories of Ethan laying on the Boppy. That is all he could really do when he came home just a little less than 2 years ago. Today he is walking! It is amazing to be in the kitchen and then look up and see him walking towards me, knowing that he came from the living room! I absolutely promise to get it on video and post it! Ethan knows that he is such hot stuff now too! He only wants to hold on to someone's hand when he wants to! He is hilarious!

Details...I need details...

Here is a cute Bryce story for you:

Last week we were driving home from Okemos and I said something to Ethan. Ethan promptly responded, "Why?" (I think he is too young to be using this word!) I just responded with, "Because."

Bryce didn't think this answer was good enough. Here is our conversation that followed:

Bryce: Why mom?
Me: Because I said so and let's just leave it at that!
Bryce: No mom, I need details. Why? Give me details!
Weylin: We'll just give you the details about how long you can be grounded!
Bryce: OK, I don't need details anymore!

Home, sweet, home

Yeah! We were able to break out of Sparrow just a couple hours ago! We are so thankful to be home! Ethan is sitting in his chair watching Blue's Clues as I type! I cannot believe the turn around he has had in less than 24 hours! Wow! He is back to his sassy little self again! I swear he is even asking "Why?" to some things we tell him now! Isn't he too young for that! Ethan is completely off the oxygen and has been since about noon today! We are still having him on the vent at all times, but we'll survive. Ethan's lungs still sound pretty bad, but they are sounding overall better than yesterday! The PICU doctor showed us the x-ray they took last night and there is a very clear bubble of infection in his left lung. We don't know where it came from, but hopefully it will be gone soon! Ethan came home with a new breathing treatment, nystatin, and 2 antibiotics. We'll be busy for the next 10 days or so with all the new meds! And the Diuril wean is on hold for now. We don't know if that was part of the problem or not, so the doctor just increased the dose back to what it was. Thanks for all the prayers! There is absolutely no doubt in my mind that they work! There is absolutely no way that the child I took to the hospital yesterday would be home with me today without your prayers! Thank you so much!

Ethan's plans...

Are not our plans...

Yesterday Ethan started acting really funky. It worked out really well, coincidentally, or rather divinely inspired, that Bryce had a check up at the pediatrician yesterday. I called and wouldn't you know, they had an appointment available for Ethan right before Bryce's appointment. How blessed were we?!?!

Anywho, Ethan had been a little congested for the last week or so, just with allergy symptoms like I had. He was still his sassy normal self, all over the place and into everything in the house! Until yesterday mid-morning...something hit him and it hit him hard. His oxygen levels went down and he was just crabbier than crabby! He didn't sleep well during nap time and his heart rate was high. We gave him a couple albuterol treatments which didn't seem to help much. His lungs sounded bad. In fact, Dr. G. is not one for mincing words, especially with me because he knows I am a nurse, and he said that Ethan's lungs sounded "awful with a capital A!" He got another albuterol treatment in the office and it didn't help. They put some oxygen on Ethan and that brought his sats up. At that point, Dr. G. asked where we wanted to go, meaning Sparrow or U of M, and I told him home. He said that Ethan needed oxygen and I very politely told him we had oxygen at home. He then told me he thought Ethan had pneumonia and would benefit from IV antibiotics. I couldn't argue then.

So here we are at Sparrow in the PICU. The doctor last night was wonderful! He was very thorough and has been around for probably longer than I have been alive! He knows his stuff and he is willing to stick around and share it with us! Right now Ethan's heart rate is coming back down around his normal and his fever has broken. His chest x-ray showed some pretty good pneumonia going on and his white blood count was way up around 32! That is high! He is getting 2 IV antibiotics. He is on the vent 24/7 right now with minimal oxygen, but his oxygen levels are still not where they normally are. He is starting to feel better already thank heavens! Hopefully soon we can break out of here! We should know more after rounds today.

I cannot express my thanks and gratitude enough to Christina. There is a song from church that has a line that says, "The errand of angels is given to women..." reminds me of Christina! Thank you so much for opening up your home to Bryce and letting him have someplace fun to go when Ethan throws things in our way we didn't intend upon! We are so blessed to have your family in our lives!

It is never a good thing...

When a member of your church's leadership calls you on Tuesday and wants to meet with you...Weylin and I experienced that this week. We did meet with someone today, but because nothing is official, you will have to stay tuned until probably next week to find out what new responsibility we were asked to take on! I have to say, I was a little surprised, but I am more surprised at how excited I am! Any guesses from anyone?

Most importantly, today is Weylin's birthday! Happy Birthday Weylin! I could not have asked for a more loving man to spend the rest of my life with! He loves me unconditionally and more than I deserve! I won't tell you how old he is, but he is just a year older than last! Love you dear!

All about Bryce...

We have a separate website set up that we keep updated about Ethan, so I thought I would write about Bryce today! He certainly keeps us busy with all that he does, but I consider it a privilege to be his mother! This is a young boy who just a couple months ago when we talked about him getting baptized was crying about the fact that he would have to dunk his head under the water. However, this did not stop him from ever wanting to get baptized. He woke up on Sunday, which was also the best Mother's Day I could have asked for, and was so excited that he was going to be baptized! He was going to become a member of the church! Here is a boy who is terrified of putting his head under the water, but yet so excited to do it! Bryce did such a great job on Sunday at the baptism. I know that it really helped that Tyler's parents let us baptize Bryce on the same day that Tyler was being baptized. I like to call these boys twins separated at birth! They have practically grown up together and Tyler's mom has always watched Bryce for us, except for the short time they lived in Utah!

Bryce is also so blessed to have some great aunts and uncles as well! All of them flew in for the weekend, for Mother's Day and for his baptism. Bryce's Uncle Jared came from Utah, Aunt Elaina came from Nevada, and Aunt Tiffany came from North Carolina. We can't leave out his Aunt Meggen and Uncle Josh who are local here in Michigan too! It was great to have everyone together, as it happens so rarely now!!

Bryce played in his last soccer game of the season on Tuesday and did really well. I am hoping this summer we will get the chance to help him expand his skills even more. He has told us that he is interested in playing next year again! This will be his 4th year! As he grows up more and more, I feel more and more sad that he is so big. Where did my little Bryce go? I don't think I am going to let him get any older! Any tips on how?!?!

P.S. You will also have to pardon the pictures where they are! I still need to take the time to mess around with the blog to fully figure things out!!!! E-mail me with any tips you might have! I am not that good with technology sometimes!

So much to do, so little time...

I feel like such a slacker for not using the blog for the last 5 weeks! We also have a website at carepages.com that we use to update everyone about Ethan. The biggest problem with the blog is that I cannot access it at work, but I can access the care page at work. Oh well! I will repent and move on!

So much has happened and I can't even try to catch up. The most important event was Bryce turning 8 years old. I clearly cannot be old enough to have an 8 year old! As a great Mother's Day gift to me, Bryce has chosen to be baptized on Sunday. I could not be more proud of him than I am now! I am one proud mama! We are looking forward to getting together with friends and family this weekend and celebrating this life-changing decision Bryce has made! We are thankful to John and Christina for letting us share this day with them, as Tyler will be getting baptized as well. It was originally Tyler's date, and they let us join the date!

The first post...

Hello everyone! Welcome to our family's blog. I had decided long ago to start a blog, but hadn't taken the time to actually write on it, until now! We will be using this blog to update everyone about all the happenings in our family! We hope you enjoy reading!