Happy Holidays!

Wishing you and yours a very Merry Christmas and a happy, healthy and safe New Year!!!

Out of Critical Care...

It has been a long journey but Ethan is now out of critical care and up on the regular floor for the remainder of his recovery. He was technically well enough to go up earlier but there were no beds available.

Last Friday, Ethan returned to the O.R. to complete the surgery started on Tuesday. It took them longer then anticipated (4 hours), but they felt they were able to get a decent correction with the new spinal rods. His blood pressure and other stats remained stable during surgery. After surgery he returned to the critical care unit for recovery. While there, he had to start the low blood pressure medication again (which seems to be what happens to him when he gets out of spinal surgeries), he required more blood products and they gave him some calcium and potassium supplements by I.V.

When he came out of the first surgery, he had three I.V. sites and over the course of last week, two of them have been removed. They were able to extubate him (remove the breathing tube) on Wednesday and he has been on room air since yesterday. They were also able to remove his catheter on Wednesday and he has been going well on his own.

During the two surgeries and while he was having troubles with low blood pressure they were giving him lots of fluids to try and bring up his blood pressure/keep him well hydrated. Unfortunately, much of the fluid ended up third spacing (which means that it was collecting under his skin instead of flowing through his veins and then out with his urine) and this made him super puffy! (Anyone who has had water retention during pregnancy knows what this looks and feels like!) He was swollen from head to toe. I was surprised by how heavy it made him! It was hard to move his limbs and it felt really weird when you touched his skin. It took a long time, but he seems to be pretty much back to his normal (slightly too skinny state) as of today. It is weird, we were so used to his usual size that when he got so puffy it really concerned us and now that he is back to his usual size, I'd like to see just a bit of that weight back on so his ribs and other bones don't protrude so much.

You can see how puffy he is in this photo, especially in his arm, chest and eyes. This was taken after his first surgery. The scars on his eye are due to the tape they used to keep his eyes shut during surgery. He has been super sensitive to tapes lately. They used a different technique for the surgery on Friday which was much gentler on his skin.

When compared to Clayton's hand, you can see how puffy his hand was earlier this week.

 



Now he just has to finish his antibiotics and tolerate sitting in his wheelchair and then he can come home. :)

Thank you for all the good thoughts that were sent over the past 11 days, they are greatly appreciated!

Nine Hours Later...

...and Ethan finally came out of surgery. It took almost another hour for them to have him settled in critical care before they let us see him.

Before we were able to see him, the surgeon came to talk to us and let us know that surgery did not go quite as planned. It took a long time to access his airway and his veins and then once surgery started, they found that parts of Ethan's spine had spontaneously fused. So instead of the single osteotomy (cutting into the bone to allow it to collapse upon itself), they had to do six. The spinal rods were removed and the screws for the new rods were secured. Unfortunately, they were having troubles keeping Ethan's blood pressure high enough and they had to stop the surgery before it could be finished.

Ethan has been in the critical care unit since Tuesday on a breathing tube (intubated) and sedated. He is also receiving continuous pain meds. Today they were able to wean him off the low blood pressure medication and restart his tube feeds. He also received a blood transfusion to bring up his red blood cell count.

Tomorrow morning he goes back into surgery to finish what they started on Tuesday. Please send any spare good wishes you have, he could use all the extra positive energy to help him through this. They are anticipating it shouldn't take more the 3 hours.

Fingers crossed it goes smoothly and he can start a full recovery tomorrow!

Requesting Good Wishes...

For later today when Ethan goes into surgery.

After almost 10 months since his last surgery, two significant respiratory illnesses, another admission in May and significant weight loss, he goes into the O.R. tomorrow to have his spinal rods replaced and they anticipate having to do a procedure that will cut away at the bone on his spine to have it collapse on itself and hopefully result in a straighter spine for Ethan.

Any good wishes you have to spare that the surgery goes well, is a success, that he recovers quickly and feels better for all of it would be greatly appreciated! It is always a bit nerve wracking before we go in, I just hope that we can keep on top his pain management throughout as that is the hardest part, seeing him in pain and not being able to do anything to help him!

To prepare for his surgery, he had his hair cut a bit shorter this weekend. We are trialing a different wheelchair and he was able to sit in that without the headrest while he got his hair cut. He is getting to be such a big boy!

Something New

On the weekend Lorelei had her birthday party with friends and family. For the second year, we brought Ethan along to celebrate too! Her party this year was at the movie theatre and we went to watch the new Minions movie.

We brought Ethan in after the previews and sound check and he sat through the whole movie! :) He typically isn't a huge fan of feature length movies and this was his first time at a movie theatre. Clayton sat next to him and was prepared to leave with Ethan if things didn't work out. He did chat a little, giggled some and pretty much just went with the new experience.

Lorelei had wanted to sit next to him, so she sat next to Clayton and she was happy he was able to participate in the movie portion of her party! After the movie, the rest of the kids went to the party room for snacks and cake while Ethan headed home. Overall another check mark on typical experiences we've had with him and that he has seemed to enjoy! YEAH!!!

Although he didn't quite make it fully intact to the theatre (some icing got stuck to the wrap we used), here is the cake I made for her this year. I had some extra hands helping with the actual baking of the cake and looked at different images of cakes other people had made when I iced it.

Lorelei loved it and was very proud of the job I did. :)

Happy Birthday Beautiful!

It is hard to believe that our baby girl is now 10 years old!! She has changed so much over the years, but always keeping her wonderful personality, confidence, kindness and love in the forefront! I hope as we transition through puberty into her teen years that we all survive it without too many fights and come out the other end all the better.

Since she is a summer baby, they always celebrate her birthday in June at school. Her teacher shared with me how wonderful Lorelei was to have in her class and that when she was asked if she could have anything for her birthday, what would it be?! Lorelei's teacher was quite surprised by the answer she received. It turns out Lorelei did not say she would like a Lamborghini like some of her peers did, nor any other item of fame and fortune. She asked for the same thing she asked Santa for...a hospital bed for her brother! How awesome is she?!

To celebrate the most important girl in my life, I've put together a collage through the years...

We love you sweetie and hope all your wishes and dreams come true this year and in years to come.

Posted too Soon???

Well, it feels like I posted the last update a bit too soon. On Sunday, Ethan started vomiting and having crazy diarrhea. We couldn't understand how he was suddenly taking such a turn in the wrong direction. He was still doing well with his oxygen needs but was no longer tolerating the bit of food he was getting. Any bit of feed we were trying to give him came flying out of him almost as soon as it went in.

We had to stop his feeds again and he relied on the IV for fluids for another day. When we tried to restart feeds the next day, he was only getting 10 ml/hr and was still not digesting it hours after the feed had ended. So his feeds were held for about 12 hours as we discussed what this might mean for him. He has lost enough weight that his dietitian commented she really doesn't want to know how low his weight is right now as you can see he's lost again. They started talking about giving him nourishment by TPN (Total Parenteral Nutrition) which goes directly into the bloodstream. Given Ethan's veins can be pretty weak (thanks for that one Omi!) and the fact it can be painful by IVs in the hand, our dietitian said he would have to have a central line placed into a major vein leading to the heart to deliver the nutrition he needs. We have friends who have used this with great success for their little man, but it does come with its own risks (mainly if the main line infects and accessing the vein could be an issue also).

As a last ditch effort, we started him with very tiny amounts of Pedialyte for the first bit and then building slightly as we could. Thankfully, he was able to keep this in. The next day we progressed to 1/2 Pedialyte and 1/2 his feed strength at low amounts, and continued daily until last night when they started giving him full strength feeds which when run all day provide him with all the calories he needs. They have since been building the speed at which his food is delivered and giving him time off the feeding pump.

On Thursday, Ethan was switched to nasal prongs as his oxygen requirements came down really well. The prongs were irritating his nose so they switch to smaller ones yesterday and today he decided to remove them on his own when the medical team was in. He was still getting good oxygen saturation numbers so has remained off oxygen all day. We're hoping he goes through the night as well but have the prongs ready should he need them.

Most of us would think, "Yeah, I'd take them off too if it were me!", right?! Well, when he was on the oxygen mask I was repositioning it each time it needed it, but there was one time I must have been too slow at it because I watched him move it himself (similar to how I'd been moving it) so that it sat better on his face. It was really neat to watch! I kind of thought as soon as he was feeling better he'd be trying to get the mask off as quick as possible but he must have known/felt it was doing him some good.

On the Move

Ethan had a really good day on Saturday with his oxygenation needs. He was weaned down to 30% oxygen and is almost getting his full calorie allotment throughout the day. He woke early and was in a bit of a foul mood for much of the day but he took a late nap and awoke much more pleasant. He was sent from the critical care unit up to the pediatric floor to continue his recovery late in the evening and is settling in well.

Back in Hospital

Well, it has been just over a month since our last visit to the emergency department for a respiratory illness and Ethan had been doing well since his discharge from hospital.

Then the last Wednesday in February, while he was at school, he got sick several times. When he came home, he was fine, he just had an occasional barky, wet sounding cough. Thursday and Friday morning he got sick once first thing in the morning and continued to have this occasional barky cough. We increased some of his medications and he seemed to be improving the next three days without any emesis. On Tuesday, after we thought we were on the road to recovery, he started to throw up again and was starting to look like he was coming down with another respiratory illness. Wednesday he was still throwing up several times a day and in the afternoon his nose started running, he was sneezing lots and he wouldn't stop coughing. At bedtime he was really starting to work hard to breathe and was pretty agitated with anyone doing anything to him (giving him his usual puffers or changing his diaper or repositioning him). I was starting to get quite concerned with his health but we waited to see if he would settle through the night. Which he did not! By Thursday morning he'd had a really rough night, was still working really hard to breathe and was not tolerating much of his food. We decided to head to the emergency room to have him checked over anticipating he would likely be admitted to hospital.

And admitted he was. He is back in critical care on 50% oxygen but doing pretty well at keeping his oxygen saturations high. He is improving but still working hard to breathe. He has been able to rest a couple times and goes into deep periods of sleep.

About the only thing that is good about showing up at the hospital in cold and flu season is how quickly they are able to provide results for respiratory illnesses. He is RSV positive, so they want to keep a good eye on him. He tested positive for RSV in March of 2011 and was quite ill from that. He still looks so very thin (may have lost even more weight). We restarted his feeds and are working to increase his calories.

Walking Papers...

Ethan just got discharged from hospital! :) I will be heading out shortly to go pick him up.

He was off monitors and has had his IV out for a few days now. We were just working up his feeds and he needed the smallest whiffs of oxygen at night. Last night was his first night without any oxygen! :)

Happy Valentine's Day! Great gift for your family Ethan!

The Road to Recovery

Ethan is now well on his way to recovery. He was moved from critical care to the pediatric floor yesterday, is able to go on just 0.5 litres of oxygen without issue and had his chest tube taken out this evening. How amazing is that from a week ago?

They tried to clamp the tube for removal yesterday but the pneumothorax in his upper right lobe had grown a bit when we challenged him so they unclamped everything and decided to leave it in another day.

It is kind of funny the emotional rollercoaster you ride during times like this.

I was sick over the weekend and had to go home to take care of myself. When I saw him yesterday morning I was taken aback by how thin he looks. It's not like Ethan was in need of losing any weight to begin with but his bones just seem more predominant then before. Then he failed the first challenge with the chest tube, has a really sore bottom from the antibiotics and last night when he finally fell asleep it was into a super deep sleep where his heart rate kept causing the monitors to alarm for at least the first few hours. He just seemed so frail to me. It isn't often I feel this way about Ethan and I have to say it is good to have Clayton be the rock for me. He said how strong Ethan is and that he would bounce back. In my heart I know this it is just when he is in such a vulnerable time that it is hard to see past all the tubes, and monitors and challenges.

Then we welcomed in today and the new gains he's made. He is getting his full calories now and we're working to increase the rate so he isn't feeding all day long. Ethan is quite well known at our hospital, just about everyone I saw today said to me that it's been a long time since they've seen him. It is good, it is true, he's amazing!

It is so hard to believe my amazing little boy will be 7 tomorrow! Happy Birthday sweetie, we look forward to celebrating with you tomorrow and for all the tomorrows that follow, may they be more then I could dream to count!

 

Taken this afternoon, you can see his chest monitor, nasal prongs, IV...and that he is in need of a haircut! It was all kind of swooshed up and back today, very cute!

In Hospital

Ethan has been doing really well lately, but caught himself Influenza A recently and it is just too strong for him to beat at home. We managed for about a week at home, including a trip to the doctor for antibiotics. After we finished the course of antibiotics, he was still not well - working harder to breathe, throwing up anytime we tried to give him any of his formula and pretty lethargic so we brought him back to the doctor...who suggested we bring him to our children's emergency room.

That was Tuesday night, we've since been admitted to the critical care unit and he is getting high-flow oxygen delivered by nasal prongs. He was somewhat improved yesterday playing and smiling with me.

Then things went downhill. He became more lethargic and his oxygen requirements became increased and to say he was irritable is to put it mildly! I had left for a quick shower - felt good to wash off some of the grime of being in hospital - and when I returned he was really working hard to breathe, they had his oxygen set up to 100%, he was in rough shape and they were talking about intubating him.

After a chest x-ray it was found he had a significant pneumothorax or as they referred to it, pneumo. Say what?! Pneumo like pneumonia? Nope! Like in a leak in the lung causing air to build up between his lung and ribs. Sure explained his disposition though! Surprisingly his x-ray was textbook imaging of a pneumo...but in true Ethan style his presentation was anything but! Typically you do not hear lung sounds when this occurs, especially when it is as significant as his was. The treatment for a significant pneumo is to put a tube into the cavity between the lung and ribcage to vent out the air (which if it continues to grow can crush against the organs as it continues to build). The doctor who did the procedure did extra imaging to be sure the x-ray was correct!

Thanks to the attentiveness of his nurse, the nurse supervisor (who was his nurse the night before) the resident and rapid response of his doctor, they were able to deal with it relatively quickly. Although the tube is still in, the procedure was very successful. His oxygen needs have greatly decreased, he is working less to breathe and is improving. Apparently it can be pretty painful though and that seems to cause him a lot of discomfort. With sufficient pain meds he has been in a wakeful state all afternoon and even making vocalizations, smiling and playing with his hand again! :) Here's hoping he has a good night!

It has been almost two years since his last bad respiratory illness that saw us spend 11 days in critical care and another 6 days recovering on the pediatric wing.

Happy New Year!

I know it has been forever since I've had a chance to post and I have to say today is not the day I can catch up, but I wanted to send a quick greeting to anyone who might still be checking in on us.

Things have been rather busy lately, but I do hope to update things as we have had lots going on for 2014 and look forward to more new things into 2015!

We hope everyone had a great Christmas and rang in a happy and healthy New Year!