~Teddy Bear~

 

Ethan has gotten attached to his teddy bear lately.  He never was a guy that needed anything to sooth him…no soother, no blankie, only a brief time of thumb sucking…so this is a cute change.  Teddy goes all over the house with him, even goes potty with him!  Teddy has been there since the beginning, we bought him the first day Ethan was in the Stollery to show our support for the hospital.  So it’s nice to see that he has a connection with him…besides there is nothing cuter then a little boy snuggling a teddy!

~Hospital Scary Time~

So we got hospitalized for the first time a couple of weeks ago…I knew that it would happen sooner rather then later but it didn’t make it any less scary for Ethan, Randy or I…

He choked on a piece of a Nutragrain Bar and it got stuck in his esophagus…I’m sure you can piece together the rest of how that went.  So he couldn’t eat anything and everything came up that we tried to give him.  So after 6 hours of nothing being able to go down I took him to the emergency room to get checked out.  They consulted with our specialists at the Stollery Childrens’ Hospital and decided to hospitalize us for observation.  If it worsened then we would be transported to Edmonton…

So we checked into room 329, right outside the nurses station, and settled in for the weekend.  We found the play room and the movies and the little kitchenette and got comfortable with our little environment.  They put Ethan on an IV and took blood to check him for infections and did Xrays to see if they could see anything stuck.  None of which were easy or fun for Ethan or I.  He was traumatized by the whole experience and it broke my heart to watch him have to go through it…

I stayed at the hospital with Ethan;  Randy came back and forth with the coffee and food for me…

It took until Saturday night until Ethan was able to eat anything and that was a Danino yogurt.  We were so happy!  From there we switched his hospital diet to a puree diet which he ate for two meals, then we switched him to a minced diet which he ate without problem the rest of the time we were there. 

We met with the Paediatrician on Saturday followed by the surgeons from Grande Prairie.  They all thought that he had suffered something being stuck and that it was likely now swollen or bruised and thereby difficult to eat.  The surgeons told me that they could do a scope to see what is going on but I told them that I would rather be sent to Edmonton where they deal with paediatrics if that was the course of action…

Long story short, he made a good recovery and we got discharged on Monday morning after meeting with our family doctor.  They made us an appt at the Stollery for Thursday for a check up and meeting with the specialist.

I had to fly to Saskatoon on Tuesday for work and Randy and Ethan headed to his Moms’ house in Vegreville until the appointment.  My boss (in my DREAM JOB) let me change my flight to stop in Edmonton so that I could be with Ethan during his tests.  Unfortunately my flight didn’t get in until 10:20am and his test was at 8:45am and I missed it…but I did get to go to the appt with the specialist in the afternoon.  

I have to say that it was the best meeting we have had so far with a specialist in regards to Ethan's’ care.    He gave us concrete “what to do in this scenario” actions and how to deal with different situations.  I’m very happy with the information that he gave us and feel better about what we can do when he chokes…that being said, we are going to get in touch with someone in GP who can teach us children's’ first aid.  It is time to educate ourselves…

We are all home now and Ethan is doing okay…we are cautious and keeping his diet pretty simple…I’m hoping that we gradually aren’t scared and feel okay with feeding him normal again…but I’m not rushing it!

So that was our excitement/scary time with Ethan…poor little guy!  Thank goodness the hospital had 1 Max & Ruby VHS tape, it kept us sane when Ethan was tied to an IV and couldn’t run around the playroom! 

~No more Surgeries!!!~

We are so happy to let everyone know that Ethan will NOT be needing any further surgeries at this point.  He went through a camera scope of his esophagus and a dilation of his esophagus on Monday and when we spoke to the specialist afterwards he told us that everything is as good as it can be.  So it is a mixed result.  In one hand we are relieved because we won’t have to go back and forth to Edmonton and put Ethan through a series of procedures.  On the other hand, how he eats is as good as it will get.  So we will have to watch him eating and be careful at least until he gets a little older and gains some understanding.  He is already improving leaps and bounds from where he was and rarely chokes anymore.  He is learning already how to chew and swallow his food to make it easier to go down.  It also helps that he has a mouthful of teeth now too!  So we will just carry on and love up our little guy just as he is!

So we can carry on making plans for the summer now that we know that everything is alright.  So we are going to put Ethan into a Gymniks class and swimming lessons for next month.  He loves to tumble and jump so we thought he would love a gymnastics type class.  I’m so excited and now am looking forward to summertime and all the fun it will bring.

~Appointment Update~

Well we had a good trip to Edmonton last week. We were able to combine the appointment with some fun time and had a great time with some old friends. We drove up to Edmonton on Wednesday and hit West Edmonton Mall for some Vietnamese Food (shocker eh?) We went to Walmart to pick up a few things I needed for Ethan and then headed to Ft Saskatchewan to stay with Chantel, Cory & kids for the night. We had such a great time and it was so nice to have time to visit without a deadline of needing to go somewhere. We sat around and visited with Chantel until Cory came home and after a bit he BBQ'd us up some burgers and we had a yummy supper.

After supper it was bedtime for all the kids...haha as if Ethan was going to sleep!!! He ended up going to bed around 9:30pm the little sneak. Anyhow we sat around shooting the breeze and at 9:30pm Randy, Cory and Coby went with the neighbours to watch the fireworks, it was Canada Day after all. Chantel and I lasted until 11pm visiting and despite neither of us wanting to end the great conversation we were having we knew we needed to get to bed. She was starting her daycare the next morning and we had Ethans' appt.

In the morning we got up and headed to the University Hospital for the first part of our tests. It was a clinical test were she simply observed Ethan eating. He was hungry so he ate like a little trooper for us. He didn't have any problems while she watched so it was a little discouraging since she didn't see what we normally deal with. She did however make observations and asked sooo many questions that I really felt that she understood and legitimatized our concerns.

We had time for Randy and I to have a quick bite of lunch before the next part of the test. This was an MRI where they laced his food with barium and I fed it to him (while wearing this massively heavy and hot lead apron!) We had the same specialist in the room with us as well as a couple of radiologists. Randy got to sit in the room with the monitors and watch as Ethan's food went down.

Ethan was a trooper though and did so well on that test as well. I didn't have high hopes going into it based on the set up. They have a little chair seated next to the machine and the Xray thingy comes up beside him. It had stickers all over it and they wanted Ethan to look straight forward...I was like, then why did you cover that thing with stickers. So we had a few minutes of convincing him to look forward but in the end he did really well and they got the views they needed.

So the long and the short of the whole experience is that he does have a problem with the muscles of his esophagus. They don't move food as quickly as they should. Also liquids are pooling at the top of his throat and when there gets to be too much they go into his airways. So there is nothing they can do medically for it. It is what it is. So we are just to feed him slowly and keep his food minced for him until he gets teeth and can break it down himself. As for liquids the bottles are gone and he has to drink from a sippy cup. I'm still trying to figure out how to wean him off the nighttime bottle though (if you can help, let me know, I'm ready to go around the bend!!!) A bottle is a continuous flow and he can't have that because it doesn't go down fast enough and it overflows into his airways. So now we know why he was coughing and choking so much at bedtime. It also explains all the little colds, the ear infection...

So he is on a sippy cup now most of the time and if he still has problems with that then he will need to drink thickened liquids. This would be as thick as honey. Mmmmm sounds thirst quenching doesn't it? So we're hoping (and so is the specialist) that it doesn't come to that.

I'm guessing that we will have a follow up here with our Neonatologist specialist and he may order more tests based on the esophagus not moving food very well but we don't know.

After all the tests etc. we decided that since Ethan had been so good we would take him to Toys R Us and Chapters and get him a toy and book. We got him a sorting puzzle and a wooden block train that he can tear apart and put back together. He also got a great new peekaboo book for bedtime.

We headed to Grandma Maxines' in Vegreville after the bookstore and went for supper and had a visit. It was a short visit but she was sure happy to see Ethan and so surprised at how big he's grown. Ethan got to sit on a horse for the first time at Grandmas' and he wasn't too thrilled about it. He got really scared and freaked out. Poor little man.

Anyhow we didn't get many pictures of our trip because someone forgot to charge the battery on the camera and didn't bring the charger...oops. But I did get a couple of really nice ones of Randy and Ethan at the acreage.






Kizzy the horse did very well being patient while Ethan pitched a fit on her back...

So thanks for the emails and thoughts and prayers while we went through this latest hurdle. We are thankful that it isn't more serious and that it is something that we as a family can deal with. We got some great news in the last couple of days so wait for an update in a week or so as to what it is!

----no I am not pregnant----

~Hey Family!~

Hi all,

So because of Ethan's fistula problem we have been referred to genetic counselling to ensure that this won't happen to us again if we have another baby. He was very lucky and only had the problem with his esophagus and trachea, it can occur with severe mental impairment; heart, kidney, vertebrae and brain anomalies. So we want to be sure that his was an isolated case and not something genetic that could affect us again.

So of course we need to collect family information. Specifically any on this list:

Blindness
Blood Disorders (ie: hemophilia, sickle cells, thalassemia)
Cancer (breast or bowel, more than 2 affected people)
Chromosome anomalies (ie. Down Syndrome)
Cleft Lip and/or palate
Cystic Fibrosis
Deafness
Early Childhood Death
Epilepsy
Heart Disorders
Hemochromatosis
Huntington Disease
Limb abnormalities (ie. clubfoot)
Mental Retardation
Metabolic diseases
Miscarriages (3 or more)
Muscle problems (ie. muscular dystrophy)
Neural tube defects (ie. spina bifida, anencephaly)
Neurological disorders (brain or nerve)
Seizures
Skeletal (bone) disorders (ie. dwarfism, multiple fractures)
Stillbirths
Tay Sachs disease
Visual problems

So this list is just an example of most common disorders that they come across. If there is something that is not on the list feel free to add it to your email. They not only request info on my siblings but also on nieces and nephews so please list if there is anything down the line from you...

They will be studying Ethan's surgical records and doing some tests with him and once we get a report from them I will share the information. Now obviously it is more relevant to us because of Randy's information but he really doesn't have any medical history on his side so it won't change it much. I'm fairly confident that they won't come up with much but we're just trying to do the best for our little family!

I would love it if I could get the info before Tuesday of next week because I have to send it back to the genetic clinic next week so that we can hopefully get in to see them before the snow flies up here.

Email me if you have any questions at scrapinitblue@yahoo.ca!

(I did email a few of you that I had email addresses for but I thought I would post it here too to catch some of you that may read my blog but not be included in my email list. If you are that person you need to get me your email address so you can be included!!!)

~Day 2 of Ethan's Recovery~

This morning we made it into the NICU at 9:30am in time for the Dr's rounds. When we left last night at 9:45pm they were giving Ethan an additional dose of Morphine because you could tell he was experiencing some pain. It totally broke my heart and I left the NICU in tears.

This morning Dr Narvey and the other practioners told us that they were going to be decreasing his morphine by half to 10mcg/kg/hr, and also starting to wean him from his intubator. He is able to breathe on his own but because of the morphine he gets too relaxed and won't. So they are attempting to gradually wean him from both so that a) he doesn't have withdrawals from the morphine, and b) so that he can gradually take over his own breathing. They also told us that they are removing half of his staples this evening at midnight and the other half tomorrow night. A very good sign that he is healing quickly!

Our nurse today also told us that it may be as soon as this evening that they take him off of intubation and that we may be able to hold him tonight. I'm scared of the idea of holding him because he has sutures inside him and I'm scared of tearing them out but the nurse assured me that it wouldn't.

He looks really good though and all systems are a go. They did an echocardigram this morning to check out his heart because sometimes there are heart anomallys that go along with his type of fistula but it all came back great. So glad to hear that. We ran into his surgeon again today in the hall and he asked about him which made our day. What a compassionate man he is.

His little hand with Randy and mine.


Grandma Rogers got to hold him the other day before his surgery. Here is the pic of them cuddling in the NICU.


The morning after his surgery. Scary tubes and wires everywhere but doing the job to make him healthy again.






He got to meet Grandma Grounds yesterday as well. Her and Cliff came to the city to meet the little guy. It was a short visit but she'll be back again next week. Uncle Mike, a dear college friend of mine, is coming by for a visit tonight. It's his birthday too so we got him a card...Ethan's first card, LOL! We went to the gift shop today and bought a Stollery Childrens' hospital bear and another fun little dangly puppy dog toy to put in his bassinet. Both of us will now be upping our support for the Stollery Children's Hospital. We encourage our friends and family to do so as well...they are truly miracle workers!

Anyhow, thank you so much for your love and prayers. We appreciate all of the support coming in for our little man from all over. We can't wait to take him home and be a family!