Let's play a game

I think most people have heard of the game 5-spot, or simply "Spot the differences" where you look at two pictures and pick out five things that are different between the two. Let's play a game of that with these two pictures....

Okay let's see, what's different? What's that? Why yes, THE VENTILATOR IS GONE!! (Ok, well it's actually in the closet not GONE gone) and not just for the picture! Hope has successfully weaned off of the ventilator! She hasn't been on it at all for over a week now. She's done absolutely great with the weaning process and doesn't need it at all any more.

The next big step will be getting the trach out (likely this fall). Our next appointment with the pulmonologist is at the beginning of September, and we see her ENT doc in August so hopefully they will both give the go-ahead for getting the trach out!

Oh, and for those of you who really wanted to play the game, there really are 5 (ish) differences between the pictures :)

Lots of progress

It is so nice that the weather has finally warmed up enough that we can get outside!! Hope loves to be outside! Now that she is free from the ventilator during the day it is much easier to go outside with her. Last year in order to go outside we had to switch her from her bedside ventilator to the travel ventilator, hook up a tank of oxygen, take her suction machine and travel bag and somehow figure out a way to take all of this outside with us. As you can imagine, we didn't make it outside any too often. This year it's as simple as plopping her in the wagon and heading outside. She doesn't need the oxygen or the ventilator and now that she's more stable we don't take the other bags outside with us. Hope just loves to go for rides in her wagon. She loves to feel the bumps and get the fresh air in her face.

Last Thursday Hope went to see her ophthalmologist. Normally when she goes the doctor quickly holds a few toys or other objects up in front of her face for just a second or two and makes a determination on her ability to focus, follow, track etc based on that. It can be a little frustrating because it takes Hope a little longer to process things. This time her vision therapist went with us to the appointment. Before the doctor came in the therapist got Hope all set up watching a simple vision therapy dvd (basically a slide show of some of the images the therapist has been working with Hope on). When the doctor came in he was able to see Hope focusing and watching the dvd. This was so very helpful! The doctor thinks Hope's vision is improving and he wrote her a prescription for lenses that are not quite as strong as the ones she has now.

The big news for Hope is that she continues to do well with her ventilator weans. She is currently on pressure support (this is where she has to initiate all of her breaths, the ventilator just gives her the pressure behind it) for 4 hours each night. We will continue to increase this every couple of days and once she is on pressure support all night we will begin to leave her off of the ventilator at night. We will start with two hours and increase every 3-5 days. Assuming all goes well the vent team at U of M are hoping to have Hope completely ventilator free by August when she sees them again. If at that point Hope is doing well we will get the blessing to see about taking her trach out! We weren't expecting them to suggest this until next year so this is a wonderful surprise. Once Hope has her trach out life will be so different! Go Hope! Go Hope!!

Major Progress!

Hope has made some amazing progress in the last few weeks! A little over a week ago we went to U of M for Hope to have a feeding evaluation. Since Hope is on the ventilator, eating by mouth would require some extra coordination beyond what is typical. The vent is pushing constant air pressure into her throat and lungs and in order to protect her airway when she swallows Hope needs to put forth extra energy. Because of this the biggest concern for her eating by mouth while she is on the ventilator is the risk of her now swallowing properly and getting food/fluid into her lungs. At U of M we thought they were going to do a full swallow study but they didn't. Instead they dyed some plain water blue and gave Hope a small amount from a spoon. Afterward we suctioned her trach to make sure she didn't take it into her lungs. No blue came out so that was a great sign. Next they dyed some applesauce blue and gave hear a small amount from a spoon. Once again we suctioned and once again - no blue! Yay Hope! Because she did so well with these "unofficial" tests Hope was given permission to have a small amount of water and pureed foods by mouth each day. We will go back to U of M in February for an official swallow study and depending on how she does we will see how much she will be able to start eating by mouth.

That is vey exciting progress but it is nothing compared to the progress Hope made yesterday.

We had been waiting for some blood work to come back before we made any more progress on weaning the ventilator settings. The blood work came back this week and it was perfect! Onward with the vent wean! We got the email with the wean order yesterday morning and we were so happy and excited at what the next step was. Hope was going to be OFF the ventilator completely for 20-30 minutes twice a day!!!

Yesterday evening we tried it for the first time. We disconnected He and turned off the ventilator. We have gotten VERY accustomed to the sound of the ventilator just being part of our everyday sounds so when we turned it off the silence was very very eerie. Hope was tube and wire free for pretty much the first time in her life! It was so exciting.

Look - no tubes!!!

Running through the house - just because we can!

Yay Hope!!