The Turkey and The Pumpkin

I don't think Maverick was too thrilled about his costume!






We took Ethan outside in the snow for the first time today. Below is a video of his first sled ride.

Sleep, Snow and Sounds

I like to sleep. No, I love to sleep. I was always a good sleeper. As a kid, even a toddler, I would just put myself to sleep if I got tired. I never worried about missing anything while I was sleeping because I loved to sleep. I am not a night owl and I prefer to be in bed by 10:30pm at the very latest. I am not a morning person either because I like to sleep in. (I always say my best hours are between 10am and 10 pm.) Ethan has, for the most part, followed in my footsteps and has been a great sleeper. In bed most nights by 7 pm and up between 7:30/8:00am. Not to mention his nap during the day.

Why then has he decided to wake every morning at 6 am? I don't like 6am...it's early. And, he doesn't get to get out of bed at 6 am either. Here's the thing--most kids who wake up would babble or talk in bed (if they can't climb out) but Ethan sets his alarm off as soon as he stands up because it can't pick up a reading. It pretty much goes off every 7 minutes after that. 7 minutes is enough time for me to get up, silence the alarm, put him back down, go back to bed and start to fall asleep right in time for it to go off again. And, we can't turn it off--neither of us is awake. You can't just turn off life saving equipment when neither adult is awake. Some would say he must not need as much sleep, but that isn't the case. It doesn't matter when he goes to bed--either 7 pm or 9 pm, he has been waking at the same time the last few mornings. (This all ahead of the time change!)

At first I thought he was probably hungry. Most 18-month-olds eat real food and thus their body has to break down that food, keeping them full longer. But because Ethan is on a liquid diet, the body can metabolize it quicker. (He still gets one large feeding with the pump at night.) I thickened it last night with some cereal, hoping that it would keep away the hunger, if that is indeed the problem. Guess what time he was awake this morning?! Yep-6 am. The other thing that wakes him up is a poopy diaper. Before our weekend getaway to TCH a few weeks ago, Ethan's had a pretty set dirty diaper schedule. It was always after his breakfast, which was perfect. Since we have returned, it wakes him up first thing in the morning. However, that used to be at 7 am. Now he wakes at 6 am, without a dirty diaper, and very tired (still giving all the signs that he is very tired) and then will remain up until he has a dirty diaper. At this point he is very awake, so even if I change it right away, he won't go back to sleep.

Here's the thing, he needs the sleep. He wakes up tired. His is exhausted by 5 pm most days, even after a good nap. We will be working on this and hopefully will get him back to what he used to do.

If you don't live in Colorado, you may not have heard about all of our snow the past 48 hours. We measured 16 inches in the backyard yesterday morning. Ethan loved to watch it snow. He would just stand at the patio door and watch the backyard fill up with snow. He also loved watching Maverick play in it. It is too cold for Ethan to go outside, but maybe if it warms up tomorrow, he can experience snow. (Since Ethan doesn't use his upper airway, there is nothing to warm the air going into his lungs, so it is rough on his lungs and not good for him to be out in cold weather.)

Craig and I were also up in the middle of the night last night. Ok, I woke up Craig because I heard a loud crash. It woke me from my sweet dreamy state and scared me. I had Craig check the house, then I checked the house and then we both went to check the garage. (Yes, that was on my insistence.) I don't know if it was snow falling off the roof or what it was, but it was loud!! We didn't find anything, so that was good.


Maverick loves to help Craig shovel--here he is in his jacket.


Watching the snow


Maverick playing and getting lost in the snow.

No break

Poor Ethan can't catch a break. And, this is nothing big, but now he has another tooth coming in and it seems to be bothering him much more compared to his previous seven. Since he has an oral aversion, the typical tricks for teething babies don't work for Ethan. He won't put a frozen/cold washcloth in his mouth or gnaw on frozen fruit. He gags if you put the mouth gel on his gums.

As I was cooking dinner tonight I looked over at Ethan and saw that a vital part of his equipment was broken. Ugh. It was 6 pm. I didn't have a replacement part and that meant that I would have to disturb the on-call person at our oxygen company. I was so frustrated because I haven't had to use the on-call (because I normally try to have a spare for every part) and with the weather being so nasty, I felt badly for anyone who would have to come out. But, we couldn't get through the night without the tiny part. I called and of course, our delivery man was more than willing to come out. It worked out because I had to go and pick up a prescription not far from where he lived. He met me at Target and handed over the vital part. I felt a little better knowing that he didn't have to drive all the way down to our home. Everything is now fixed and we are prepared for the winter storm!

Much improvement!

Ethan had a great weekend! As of yesterday his secretions are finally back to their normal color (cloudy white) and he seems to be working less to breathe. He has his full amount of energy back!! Since he is responding so well to the meds, we only have to do a three day steroid burst, instead of a five day. He also seems to be doing well with less humidity. Thank you all for your prayers! They truly mean so much to us!

Tracheities

All week I have been concerned about Ethan. The blood in his trachea seemed wrong. While he has had blood before, this amount seemed to be way to much just for a little agitation. Our pulmonary doctor was able to get us in for an appointment this afternoon. Our doctor decided to do a quick laryngoscopy (small camera sent down Ethan's trach) to see if there was a granuloma causing all the bleeding. Ethan sat on my lap during the very quick procedure and did great. While there wasn't a granuloma, the laryngoscopy showed that his trachea is raw, inflamed and bloody. Poor guy! They did give him a little lidocaine and that helped him feel better for about 45 minutes. He was diagnosed with tracheities or an infection of the lining of the trachea. We were given antibiotics and steroids to help him get over this.

The best news of all is that we looked quickly at his bronchi and they look GREAT!! We couldn't believe how amazing they looked. And, while they are far from perfect, our pulmonary doctor said he was very encouraged by the quick pictures. In December, when we have the regular bronch, we will be able to get a better picture. But, it was so exciting to see how great they looked!!

Slowly healing

Ethan seems to be making progress, although his breathing is still rough. He is still retracting a good deal and his secretions are still so bloody. Most likely we will start him on a short oral steroid burst to help calm the inflammation. I am keeping him humidified, but it isn't easy considering how mobile he has become. The great news is that he hasn't had a fever for 36 hours! I just don't like seeing him work so hard to breathe. Ethan is in good spirits though--as seen from pictures below.

It looks like he has the beginnings of a granuloma at the entrance of his g-button. That is why he is in his pjs so much. I am detaching the tube when he isn't being fed to help (then it doesn't get pulled on). If he is wearing day clothes, it is hard to get access to the button every time he needs to eat. Enjoy the pictures and video!



Ethan really LOVES this game! This is the day he started a fever...still had some energy.


This is Ethan at the E.R. Energy was gone. I was trying to entertain him with my sunglasses.


Sleeping at the hospital.


Feeling better after a nap at home.


He was trying out some ranch dressing. He did pretty good.


Since I have to keep him contained (for humidity), I had him in his walker.


Again, we play this game a lot!




He got stuck trying to get through my strategically placed chairs.


This was on Saturday in the hospital. He likes to dance to music on my iTouch.


Ethan loves to give Maverick treats. This was before Ethan got sick.

Humidity

Ethan had a rough night last night. His breathing and cough from about 4 pm on was terrible. He was wheezy and tight. We tried taking him in the bathroom and running a hot shower, but it only worked for a few minutes. I have given him an extra dose of one of his inhalers to help him breathe better. Since he is normally so active, we don't humidify him during is waking hours. However, I am trying to keep him on humidity all day today.

To do that, I need to keep him about 4 feet from the humidifier. Right now he is in his walker because he can't get very far and I can keep him contained. I am sure he thinks this is an awfully boring day so far! But, I hope it will help him to loosen up a bit.

Our little friend Annika is doing really well. She only has her i.v. for antibiotics and is up and moving around the room. She needs to have more of an appetite, but is off of oxygen completely!!

I am due for some pictures and will try to get them up later today!

Bleach

My house smells like bleach. I just bleached many of Ethan's toys. The only "problem" with toys these days is that so many have mechanical parts that I can't soak them. Those toys will have to wait for the wipe down tonight. I will probably wait to give E these toys back until we are officially in the clear. As for now, he is thoroughly enjoying the plastic cup I gave him to play with. I may go to the basement soon and get him a cardboard box. After all, isn't that what kids really want to play with?!

Ethan had a better night last night. I was up with him from 4:30-6:45 am, but otherwise he did ok. He hasn't had a fever this morning, so hopefully that means he is on the mend. He keeps coughing and moving the junk out of his lungs, so that is a good sign. It is still mostly bloody though. The only thing we can do to help with that is to lavage him (squeeze small amounts of sterile saline down his trach) but, considering that he is raw down there, I don't think that feels too good.

His oxygen is still triple his baseline, but I was able to come down yesterday. Sunday night he was quadruple his baseline. We are headed in the right direction! He took a three hour nap yesterday and because I was so tired from the weekend, I did too. :)

Ethan's bronch will now be scheduled for the first week in December. And, for the first time, I don't care that it has been moved back. I guess that I am slowly learning that God's timing is the only one that matters.

One thing I am trying to do is to figure out how to disinfect wood flooring. We have a lot of it and if Ethan wasn't still crawling, I wouldn't worry about it. But, he spends the majority of his time playing on it, so I would like to get it nice and clean. And, I don't want to do it often, just after major illness or once a month or so. I can't find a way to do it that won't hurt the wood, so if you have any suggestions, feel free to pass them along. The only one that I have heard works and won't damage the floor is the dry steam, but I don't have one of those machines.

Oxygen

He is still sleeping this morning. His saturation levels are better, but his oxygen is extremely high (we have never had him this high). Last night we were struggling to keep him 90 or above, but when I got up with him at 4:30 am, he was up to 98. It is a bit of a mystery because when I listened to him last night, he sounded clear as a bell and yet, was still having trouble. Then, when I got up with him, he sounded terrible and was coughing this deep, intense cough. We are still getting some blood when we suction him.

Last night Ethan was so tired (which may be playing a part in the saturation levels) that he sat up, eyes closed, but with tears running down his cheeks while I suctioned him. At 4:30 am, I did get a smile, but you could tell that while he was very tired, he wanted to stand up because it was easier to breathe.

I have had some questions about Tamiflu. Tamiflu is an antiviral drug. Because the flu is viral, it can't cure the flu. However, what it does do (as I was told in the hospital) is contain the flu. So, instead of allowing the flu to spread to different cells and thus, throughout the entire body, it contains the flu and isolates it. It order for it to work, one must start taking it with 24-48 hours of the first symptoms of the flu. Tamiflu lessen the intensity and duration of the flu because of the fact that it keeps it from spreading over the entire body.

Home sweet home

We left the hospital late this afternoon. It is so nice to be home. Ethan is exhausted and after a bath, was asleep before I finished giving him his Motrin and Tamiful, despite the fact that his light was shining in his face. It is such a great feeling to be in your own bed--I can't wait to go to sleep.

I was surprised that Ethan needed more oxygen than usual. This because we tested him at the hospital on his own settings and he was fine. Since I put him to bed, he has needed much more. But, we can manage it.

Thank you again for all of your prayers! I hope that in the next couple of days he can be feeling completely back to normal!

Discharge

It looks like we are going to be discharged today! It can take up to a few hours, so we aren't on our way yet. But, it is nice to know that we are going to be able to go home and let Ethan finish healing there.

E still has a fever, but I think that it is going to take a few days until the fever is completely gone. And, the cough will linger as well. As long as we can stay away from a secondary infection, he should be ok. I don't know, however, if we will be doing a bronch in the near future. Since he has been sick I have a feeling that we will have to wait 6-8 weeks to have a bronch. I will have to double check about that though.

Our little friend Annika is improving as well. She has been moved out of the PICU, so that is very exciting! He chest tube is gone as well as her arterial line. Yay!

Nice surprise!

Ethan had a much better night last night. While he went to bed late, he slept all night and didn't seem to have any problems. His cough is still intense and his secretions are thicker than normal, but the nice thing about trachs is that you can get it all out!

We don't know the plan today but I was so excited when a friend (and past NICU nurse) came to our door this morning. I thought she was coming for a visit but instead, she was floated up here! Yay! We had a wonderful nurse yesterday, but the ability to have her is so perfect! It was such a nice surprise. :)

Craig and I slept better as well. Once I know more, I will update.

Feeling better

While Ethan hasn't been fever free yet, it has been much lower compared to last night. He is doing well and standing up in his crib. He almost smiled for a few nurses, but the mask makes him leery. I don't know what the plan is for tomorrow, so we will have to wait until rounds. I was told that most of the kids they are seeing with presumed swine flu are doing just fine. Seems that many of the media outlets are a tad dramatic. That isn't to say that there aren't kids that are having a hard time with this and it is hitting a population that it normally doesn't hit as hard. However, I was told that the kids they are seeing here come in for a day or two and are monitored and they go home, barring they don't get a secondary infection. And, because this is widely known about now, many are put on Tamiflu right away. Of course, you don't want your kids to get this because you don't know how they are going to respond to it.

Ethan's cough still bothers him and he is quite dry even with humidity all day. But, he is slowly getting better. We had visits from two friends during their breaks and I also ran into past nurses in the cafeteria. Ethan has made many nursing friends on this floor and has been given stuffed animals by a couple. If only he would smile to say thanks. Right now he just frowns and starts to cry. Poor guy.

Thank you again for all the prayers!! Like always, they provide such a peace. We are praying that Ethan has a quiet and rest filled night. (Us too!) And that his symptoms do not worsen, but continue to improve.

X-Ray

Ethan's x-ray looks fine. No "fluffy" stuff. :) Since he had an x-ray about two weeks ago, it was nice to be to have something to compare it to. He is feeling quite bad, but, he is acting better compared to last night. His stranger danger has increased and since he has the flu, everyone must mask and gown up when they come in the room...that doesn't help.

A funny story from yesterday...
Ethan was sitting on my lap and his diaper had been loosened from a rectal temp. Apparently it was very loose because all of a sudden I felt my jeans get really warm. Yep, you guessed it, he peed all over me. And, since it was in my lap, it looked like I had wet my pants!

Our friends Ingrid and David and their daughter Annika are still here. However, Annika has made great strides! She is extubated, off of some meds, and had her chest tube removed today! Praise God! She is doing really well!!

Rest?

Ethan had a fairly good night last night. It took a little bit to get the orders written for Motrin and Tylenol, but once he got the Motrin, he did a lot better. The tylenol wasn't touching his >103 fever, but the Motrin took care of it. He finally got his inhaler, so that helped his breathing. His pulse finally came down once he slept, as his respiratory rate declined as well. It is assumed that he does have the swine flu, as the seasonal flu has not been seen yet. I don't know if he is going to be tested for swine, per se, but he did have his seasonal flu shot a few weeks ago.

This morning he is doing much better. His numbers look great compared to the past 48 hours. (And, yes, he looks better too.) He is still feeling yucky and is super clingy, but the look in his eyes is back a bit and on smile snuck out this morning. He was able to get his second dose of Tamiflu and that is SO key right now. It is early, but the fact that we caught it so early means he may be able to get over this quickly.

We "slept". I think napped is the more appropriate word. But, as always, we have great doctors and nurses. And, we already had a visit from a close friend who works downstairs. We are waiting to see who Ethan's chest x-ray looks. We are praying that it looks good and that there are no signs of pneumonia. Rounds should be coming soon, so if there is anything new, I will update. Thanks so much for the prayers!

Back to the CPCU

We arrived at TCH at 11:30 pm. Poor Ethan. He is tired and feels horrible. And, oddly enough, we have the exact same room we had last time we were here. I was happy that he didn't have to go to an ICU. The plan is to watch him for 24-48 hours and if he doesn't get any worse, we will be able to go home. Right now he is finally sleeping. We just got done talking to the doctor. So far it seems that we caught it early enough and the fact that he got a dose of tamiflu earlier today is a step the in right direction. His poor little lungs are tight and wheezy. His fever spiked in the ER to 103.5. But, with some Tylenol and Motrin, he should be able to rest comfortably tonight.

I started to cry a bit when we heard that Ethan would need to be admitted. Every other "visit" has been planned and the unplanned visits are always harder. We were able to stop at home very quickly and he got our things packed.

Please pray for Ethan. Pray that he will heal quickly and that he will not worsen. Please also pray for Craig and myself. Clearly we are both at risk for contracting the flu. I will update more tomorrow.

FLU!

We are at the ER with Ethan. Our doc had asked us to get a flu test done at an urgent care so that we could know if Ethan should remain on the tamiflu. Well, both of the urgent cares that I called refuse to see trach babies. So, we ended up at the ER. Ethan is positive for the flu and because they are not seeing the seasonal flu right now, it is assumed that he has the swine flu.

We have been here for a few hours and Ethan looks beat. I feel so badly for him. HIs little face is so pathetic and his cheeks are bright red. His breathing is labored as well. We are waiting for the ER doc to call our doc at TCH to see if Ethan should go on antibiotics because there was some "fluffy" stuff in his left lung. (I have NO clue what fluffy means...I am more used to doctors using appropriate terns for things with Ethan and not generic terms.)

I will update more later. If he has to be admitted, he will be take down to TCH. I don't think that is going to happen, but we are just ready.

Strike that, our doc at TCH wants Ethan admitted. We are waiting to hear if we can drive him or if he has to take an ambulance.

Sick baby

Ethan is sick. Poor guy. His fever wasn't terrible this morning (100.7), and he was playing a little bit, but not compared to what he normally does. It didn't take long for his work of breathing to change and his O2 requirement to go up a bit. His heart rate is elevated from the fever and he can't sleep. After an email correspondence, it was decided to start him on Tamiflu, as his fever is climbing and is now at 101.5. He is wheezy as well. I was hoping he would fall asleep after he got his Tylenol, but no such luck yet. It may be time to spend some quality snuggle time in the rocking chair....

ECHO

Ethan had a follow up ECHO today. I knew he wasn't going to do well with it, so I requested some nasal versed at the very beginning of the appointment. He cried through getting weighed and having his vitals checked, so I knew there would be no way he would stay still for his ECHO. Nasal versed is very fast acting and it was pretty clear that he was feeling good once he had it!

The best part was that our doctor is thrilled with how the ECHO looks! Thrilled! He said that the valve is functioning amazingly well and that the pulmonary arteries look great! We are so excited. He said that he could not have imagined a better outcome from the surgery. And, now we get to wait 6 months until we see him again. (We are now 2 for 3 in being able to not go down during the winter season!!)

I can't tell if Ethan is getting sick, but both Craig and I are a little worried that he might be. We have turned up his oxygen and he is quite junky. So far his temp is normal, so I hope it is just that he is very worn out from today and is sleeping so hard he isn't breathing deeply enough.

We all want to see what Ethan's bronchi look like. I have been trying for weeks (literally) to schedule a bronch, but for some reason, I am hitting many roadblocks. Our cardiologist is also very interested to see the results of the bronch. It will happen soon, I am sure. We feel so blessed by what God has provided us! His guiding hands during the surgery and His healing hands post surgery have touched Ethan greatly.

Since we were down at TCH I stopped by to see our friend who is in the PICU with her daughter. So far, her daughter is still intubated, but there are hopes for extubation tomorrow. She is on blood pressure meds, sedation, antibiotics, etc. Her parents are devoted believers who are trusting the Lord fully during this difficult time.

Wow

Tonight, I was shocked. Ethan and I were dining at home on a scrumptious meal. I offered him some of the sauce from the potatoes. He was interested and wanted more. And then some more and then some more. About 20 bites later, he was finished. My meal got cold as I didn't want to break great pattern he had going. He had half on his shirt because he is still getting used to moving food in his mouth.

I would pause when I thought he needed a break and try to take a bite myself. Once Ethan saw that he would bang on his tray and babble at me to get my attention. I would then give him another bite. The consistency was that of pasta sauce and his bites were almost a full baby spoon. He only gagged twice, but neither time resulted in vomit. I didn't know what to do. I wanted to film it and/or take a pictures, but my camera was out of battery (figures). It was so exciting. He seemed to understand what he was doing too. I really, really hope this was not a one time deal!!!!

Tubing

In the pictures from Sunday, you may have noticed that we have somewhat changed up the tubing situation during the day. When Ethan was moved from the CICU to the CPCU, the respiratory therapist made a trach mask that could be directly hooked up to oxygen. It was used for transporting Ethan, but we took it home. Ethan only receives humidity while he is sleeping and we have been doing that for some time. There would be no way to keep him hooked to the humidity while he is awake because it is only a 4 ft tube. If you are curious to what it looks like, scroll down to my entry from Sunday. (You can see it best in the picture entitled "Reading.")

We had to wait until Ethan was close to his baseline to use the new set up and it is much easier. There is a little bit of light blue tubing attached to the oxygen tubing. Overall, it makes life a lot easier!

Ethan's little tushy seems to be healing. His diarrhea seems to have slightly improved. Otherwise he is his same happy self. :)

As for an update on our friend's daughter...she is stable. Last I heard she had a procedure to try to clear the fluid from around her lungs. She had been extubated, but was reintubated after the procedure. Her hospital stay most likely will be a few weeks. Please continue to pray for her. Thanks!

New tricks

Before I write about Ethan, I ask you to pray for friends of ours and their daughter. I hadn't asked for permission to publish her name (so I won't until I have that), but her little girl (6 years old) was airlifted down to TCH with serious pneumonia. She is in the PICU. I was able to talk to her mom and give her some insights into life at TCH. Please pray for the entire family, but mainly for God's healing hand on her daughter's lungs. It is very serious as her daughter is intubated with a chest tube. Many of us are lifting her up in prayer tomorrow morning at 9am, so if you have the opportunity, I would greatly appreciate it if you would. Thank you!

Ethan has been doing ok the past few days. He has had some bad diarrhea for the past two days and has slept a lot. His poor tushy is red and bleeding from diaper rash. He rarely ever has diaper rash and I am glad that he is handling it much better compared to when he was in the hospital. At that time he would clamp down and have to be bagged out of it.

Friday night to Saturday he slept 15 hours. His normal is 13 hours at night and two in the middle of the day. He doesn't have any other symptoms, so hopefully he just needs to work something out of his system. We are still on lasix once a day. And, while his oxygen has gone up a little bit, his work of breathing has not, so we did not go back up on the dosing.

Ethan has made some big steps with his eating lately. On two separate occasions, Ethan has taken 4-5 half baby spoonfuls of food. Once it was pasta sauce (he really likes anything tomato based) and the other was with my potato soup. It isn't much, BUT it is so much more compared to what he has been willing to do. He also was very interested in my pizza the other night and tried to take a bite. His signs for eating have improved as well--he will lean forward and open his mouth now, when he is interested. And, he now licks his lips to get a taste of whatever I am giving him. It is a VERY slow process, but it is encouraging to see such improvement. I can't imagine what it will be like the day he eats a full meal or even a cup of applesauce--be prepared in advance for a very excited mom!

While he still doesn't like his AFOs, he is up and moving more. He is doing better at transferring from one object to another. Ethan's new thing is to crawl or go anywhere with something in his hands. Below are some pictures!


Ethan has figured out how to give Maverick treats.




Reading





Sweetly sleeping

Results

I tried one room air trial this past week and it didn't go so well. 15 minutes into it, Ethan was right below 90 and he is supposed to be at 93 or above. However, I don't know if it is because we are also weaning his lasix right now, which I don't think he is tolerating that well. We have already turned up his oxygen slightly and he may need to be turned up again. It looks like we may have to go back to a twice a day dose.

Our pediatrician had said that sometimes it takes kids a couple of weeks or a few months to come off of lasix. Maybe once we get that all figured out, we can try the room air trials again. Otherwise, Ethan is doing well.

I realize I need to put up some pictures, so stay tuned! :)

Because they are never too young

I was cleaning Ethan up after he vomited all over himself this morning. My friend Monica and her daughter, Madelyn, were patiently waiting so that we could leave for our morning walk. The doorbell rang and I looked from the kitchen to see a police officer standing at my door. When I opened the door, he told me that there had been several (several!!) 911 calls made from my residence. I was dumbfounded. I knew I hadn't called 911. And, really, could it be that an 18-month-old did so? Surely not! Well, ok, yes, he could and yes, he did.

I had been in the bathroom and he was playing with the phone. He likes the phone and I never thought he would get the pattern correct for a 911 phone call. But, I guess he got the pattern correct multiple times! They did try to call back and I heard the phone ring, but again, I was in the bathroom and it was my business line. When I came out of the bathroom, Ethan had tossed the phone. I didn't think anything of it. This is when he vomited all over himself, so I didn't even look at the phone, but busied myself with changing his outfit and cleaning him up.

The officer was very nice, but I am sure, a little annoyed. I apologized numerous times and thanked him for checking out the situation even though I am sure they realized it was not an emergency. (He told me that had seen multiple buttons pushed.) I guess I need to get Ethan a play phone....

Room air challenge

We have been given the clearance to start room air challenges with Ethan. We will start out at one hour, twice a day. After a day or two, if Ethan isn't showing any signs off struggle, then he can move up to two hours twice a day and so on. While I was pretty convinced he was ready, this evening I am a little less convinced.

His pulse ox machine broke last night at about 3am. We got it fixed until the morning, but the same thing happened during his nap. A new one has been delivered and it may just be the new one that is giving a different reading. I will still have Ethan try tomorrow because even if he can't do it, I will be checking him often enough that I can hook him back up. But, it would be great if he can!!

18 Month Appointment

Ethan is just shy of turning 18 months, but we had our appointment anyway. His pediatrician is very happy with how well he is doing. Ethan's height has increased quite a bit, while his weight is the same as the day of his surgery. Like most parents, I was concerned that Ethan isn't meeting goals "on target," but I was assured that he is doing well and as long as he learns something new each week, there is nothing to be concerned about.

The day ended up being a little rough on him. Before his appointment he had a chest x-ray to see if we could go down on his lasix. Since the day of pre-op, Ethan gets very upset with any procedures. He cried through the x-ray and then, once we were in the room, he would cry when someone entered the room or when they left. He had his PMV on him, so we all could hear him. :)

Ethan got a larger Mic-Key button (the part of the g-tube that is actually in his tummy). This doesn't hurt at all as he pulls it out a lot--although if you don't deflate the balloon, then it can hurt. He also got his seasonal flu shot. The best part was that we were told we didn't have to come back until he is two! Yay!

Ethan is enjoying pushing his walker, although he is becoming less and less of a fan of his AFOs. He has also learned that he can just fall on his behind if he needs to get down from standing. Before he would just stand for a long time and start to whine because he couldn't figure it out.

In two weeks he has a cardiology appointment and hopefully he will be able to come off of sternal restrictions at that point! We still lift him from his behind and, while it is strengthening his core, it is harder to do. Around the same time of that appointment, Ethan will also have a bronch and pulmonary appointment. Speaking of, his oxygen situation has been interesting. He is back to baseline and he seems to be able to do without for a little bit of time.

For example, since we have returned from the hospital, Ethan has become a tummy sleeper (just like me!). However, it is very easy for the trach mask to wrap around his neck and provide oxygen to his back. When I got up this morning, the mask was on the back of his neck and his sats were still in the 90s. I left it because I wanted to see how long he could go like that and I didn't want to wake him. A hour later he was still in the 90s. We may start short trials during the day of no oxygen, but I need to talk to our pulmonary doctor before I do so. But, if he could be without oxygen during the day, that would really free him up and his development. He would not be tethered by a 50 ft oxygen tube. Plus, going out would be SO much easier. Please pray for his new and exciting development! :)