Where has this kid been all this time?

Well, it's Monday, and around here Mondays are for therapy.  John goes to Occupational therapy at 9am and Physical therapy at 10am every Monday morning.  Then he goes to school for the second half of the day.  Which means, he's pretty pooped by the time he gets home at 4:00. So this morning, on this rainy, dreary day, we loaded in the car and hauled ourselves to therapy.

He hasn't been in 2 weeks.  His physical therapist was out last week, so we decided to take the week off from occupational therapy as well.  So I wasn't sure what to expect after missing a week.  Normally, he does really well for OT and then is extremely stubborn with PT.  His OT has been working on him moving food around in his mouth with his tongue, chewing food before swallowing, and drinking from a cup.  He has been doing well with these things even though it is still hard for him.  You never realize how much work you actually have to do with your mouth in order to eat food until you watch someone who can't do it.  His OT is always happy with the work he does and she has seen improvement since we started this past summer.  But today, she said he was in his own world.  It was kind of his way or the highway and he didn't work as hard as he normally does for her.  So I guess I can give him one bad week, since he normally does really well.

When we got to PT at 10:00, I was a little skeptical.  If he was stubborn for OT, what on earth was he going to be like for PT.  He's always stubborn for her, so I can't imagine him being worse.  All of the things she is trying to get him to do for her, he does at home with no problem.  But for some reason, when he is in that room with her, he won't do any of it.  So this past week, I took some videos of him at home.  One was him crawling on all fours with his head up, like she has been trying to get him to do for months now and one was of him walking along the wall in the hallway.  She was so excited to see those videos to know that he really can do those things.  After we saw him last time, I got the impression that she was very frustrated and discouraged with what they have been able to do so far.  But all of that changed today.

The first thing she did was put him in a set of parrallel bars that they have to see how he would stand in them.  Not only did he stand in them, but he grabbed on and started walking.  That was the first big surprise.  Then she wanted to do just some static standing with him to work on his balance and stability.  The PT tech that was with us had a toy that really caught John's attention and he stood there and played with that toy for at least 10 minutes.  The PT sat behind him and held his belt loop and had one hand on his shoulder and John did the rest of the work, without holding onto anything.  He was having so much fun with that toy, and his therapist just couldn't believe how well he was doing.  Then she wanted to see him walk with a walker.  The one we used today was different than what we have at home.  At home we use a gait trainer.  It's heavier and has lots of straps and supports for him.  But the walker is more like what you see older people use.  The bar goes in the back and he just hangs onto the sides and walks, guiding it where he wants to go.  There are no straps or supports for him and it isn't as heavy.  With this, he walked around a section of hallway that was about 250 feet.  He was a little slow, and she had to use her foot to keep him from crossing his feet as he walked, but he made it all the way around.  When we came back into the therapy room, she gave him a short break and then worked with him going from the sitting position to the standing position.  He did pretty well with this as well.  Although going from standing back to sitting is a little more difficult for him.

Overall, it was an excellent therapy session and I think it even rejuvenated his therapist some.  She seemed to be less discouraged now that she has seen all of the things he is capable of.  She has a better sense of what he can do and where to go from here, so I think that will really help us going forward.  I joked with him saying that the clothes he was wearing was his therapy outfit and that I was going to make him wear it every week to therapy.  I really was only half kidding.  Hey, if something is working, why change it, right?  The only other factor we could think of was that he was wearing his hearing aids today.  Apparently, I haven't been putting them on him before therapy in the mornings, but for some reason I did today.  Maybe he was more alert with them on and that is why he was doing well.  Or maybe it's just taken all of this time for him to get comfortable with the therapist and to decide he wanted to do the work.  Whatever it was, I hope he keeps it up.  It's definitely something I have been praying about, for us to figure out what exactly was going to motivate him to work.  It's very exciting to see him do so well.



I'll end this post today with two pictures and a video I took of him at therapy.  He is such a big boy!

reaching for a toy

Progress...Maybe?

It has been 9 nights since we took John off of the ventilator, and honestly, I'm not sure how it's going.  The first 3 nights were great.  He slept with no ventilator and no oxygen and did quite well.  But when Friday night came around, all of a sudden, he needed oxygen right away.  So he slept with oxygen that night until about 3am, when the nurse was finally able to turn it off.  Saturday night was much the same, except the oxygen was turned off at 4am.  So at this point I'm thinking, 3 steps forward and 2 steps back.

Sunday night came and we were able to get him to sleep without the oxygen.  So I thought we were making progress.  But in the morning, the nurse told me he turned the oxygen on from 1am to 4am.  DRATS!  I still can't figure out for the life of me why he didn't need the oxygen the first 3 nights but now he does.  I'm just thinking maybe he's more tired and not taking deep enough breaths.

Monday and Tuesday were much the same.  He needed oxygen part of the night, but not all of the night.  By now it's really starting to bug me.  I guess all of these years with John has not given me much patience.  I want to see progress but I'm not doing so well to wait for it.

So last night, we put him to bed and it was the same thing.  His oxygen levels were below 92 and wouldn't come up without oxygen.  And even with the oxygen, they were only around 93 or 94.  None of it made any sense to me.  He should have higher oxygen sats with oxygen.  So I sat down in the chair in his room and began to tear up.  I'm just about at my breaking point and about ready to put him back on the ventilator.  I want my baby to sleep well and I want to make sure he's able to breathe well.  So my genius of a husband suggests that we take the probe off of his toe and put it on his thumb just to get a different reading.  We have been struggling with the pulse ox probe on his toe.  It's very tricky to get it in just the right spot to get a good reading.  But his thumb is smaller so it shouldn't be hard to get it on there right.  So we get it on his thumb, and low and behold his oxygen saturation is 98%.  AMAZING!  Of course that was with oxygen, but at least we knew then that it was the probe not reading right on his toe instead of him not getting enough oxygen.  The problem, of course, is we can't leave it on his thumb because he likes to put his hands behind his head.  That would cause a problem with the signal picking up.  So again, my brilliant husband suggested that we put it on his second toe instead of his big toe.  It's smaller and we shouldn't have a problem getting it on.  So that is what we ended up doing.  And VOILA!  No oxygen was needed all night long.  He still has his moments of apnea and his oxygen levels do drop down when he has those, but according to our nurse, they never went below 90% and they always came right back up.

So maybe the progress wasn't necessarily John's this time.  He has probably been doing just fine all along and we didn't know.  Maybe the progress was mine.  I am the one who needs to learn a little patience.  I just need that voice inside my head (or the voice of my husband) keeping me calm and reminding me to see the big picture and give it some time.

Baby Steps

Yesterday, we had an appointment to see John's pulmonologist.  It was his 6 month check up.  The fact that it's been six months is a good sign, because until recently, we were seeing her every 3-4 months.  We've gotten in the habit of going to these appointments with little to no expectations.  Things don't seem to change much and we just expect them to tell us to keep the status quot.  But something seemed different about this appointment.  Maybe it was God telling us that it was going to be important. 

Tommy doesn't always go with me to his doctor's appointments.  After John's first year or two, he decided that there wasn't new information being discussed and he didn't need to take time away from work to be there.  But yesterday, he really wanted to be there.  So he had to rearrange his schedule a little to make it.  Of course, the wait was forever and I was glad to have him there.  He went out and lit a fire under them after we had been there for an hour.  I wouldn't have done that, because it's just not my personality.  But he has no problems doing it.  Within 3 minutes, the nurse was in to see us.

The doctor came in and looked over his records and read through the sleep study he had last May.  While he is still having a significant amount of central apnea at night, the number of events per hour has drastically decreased.  In the beginning, he was having 100's of apnea events per hour of sleep.  In May, the report showed he was having between 5 and 6 apnea events per hour.  I'd say that's a huge improvement, but it was still somewhat of a concern.  The other part of the equation is what his oxygen saturations look like during that time.  At home, we try to keep him above 90% and that usually requires a ventilator and oxygen.  During the sleep study, without the ventilator and with some oxygen, his saturation fell as low as 81% during an event.  So that is somewhat concerning.  The reports do no indicate that he is ready to have his trach removed just yet.

Now for the encouraging news.  We made a plan.  It's always nice to have a plan going forward and not just come home and keep doing things the same way, hoping that he will just magically improve.  So we decided to take him completely off of the ventilator at night, and to start the night on room air (no oxygen).  We tried this some the last time we saw her, but we were just trying to ween him off and weren't consistent with it.  For the past several months, he has been on the ventilator every night.  She wanted us to just stop using the ventilator completely, and see how he does.  The two main concerns are what his oxygen saturations will look like when he does have apnea and whether he's getting enough rest at night to be able to continue to thrive during the day.  The brain is designed so that if you have apnea for so many seconds, it will wake you up in order to breath.  This could cause him to have a restless night and not get enough rest.  A lack of rest at night can cause problems with learning and overall development.  Obviously, we have enough trouble with that and we don't want to add to it by him not getting enough rest.  She told us to try this every night and after a month, check back with her and let her know how he does.

So last night was our first try.  He was very tired yesterday and could barely stay awake.  He fell asleep as soon as he finished his dinner.  I put him in bed just after 7:30, put his pulse ox probe on his foot and immediately the monitor said his oxygen was 98%.  That's a great start.  When he sleeps off of the ventilator, we usually have him on just oxygen.  So we put something called an HME over his trach.  This is something that helps to humidify the air that he is breathing in since it's not going through his mouth or nose.  It is not good for someone to always breath dry and cold air.  It dries out your airway.  This is attached to an adaptor that connects to the oxygen tank so that oxygen can be fed through the HME and into his airway.  So I put this on him last night, attached it to the oxygen tank, but didn't turn the oxygen on.  The plan is to keep his saturations above 92% with as little oxygen as possible.  Of course that number will dip below from time to time when he is having apnea, but as long as it comes back up, we aren't so concerned.  But if the number falls below 92% for 4-5 minutes at a time, then we would want to turn the oxygen on and see how that helps.

After I put him in bed, I stayed up until 10:00 when the nurse got there.  His oxygen had dropped 3 or 4 times in that period, but it always came right back up.  When the nurse got there, his oxygen was 96%.  I explained to her what we were doing and what she needed to watch for and when she may need to turn the oxygen on for him.  I asked her to keep track for us how many times his number dropped, what the lowest percentage was and what was the longest amount of time he spent below 92%. 

NICU at 3 months.  She knows his night time routines better than we do.  He is her baby and she takes care of him better than any nurse we've ever had.  She is pretty conservative too, so if she thought for a second that he might need oxygen, she would have turned it on.  So the fact that he stayed off all night is very encouraging to us.

We both said that we wouldn't get our hopes up.  We have done so too many times to count and we have been disappointed every time.  So while we aren't getting our hopes up, we are encouraged.  It was just the first night, so time will tell how he is really doing.  Our big focus will be whether we see a difference in him during the day.  I've already talked to his teacher at school about it and she is going to keep a close eye on him and let me know if she notices any changes.

All of this is just baby steps towards our ultimate goal of having his trach removed.  And even though the steps are small, they are still the biggest we've taken towards this goal so far.  The long term plan is to continue this at night and then in a few months we will have a sleep study.  If all goes well with the sleep study and the doctor thinks he is ready, we will be able to take that thing out of his neck for good.  It will mean so much to us if we are finally able to do that.  It will improve the quality of life for him and for us.  There are so many things he will be able to do, that he can't do now with the trach, and overall, we just won't have to worry about him so much.  One thing I can't wait for him to do is go swimming and splash the water as much as he wants.  But the first thing we will do is throw a giant  party and you are all invited.

Please pray for us as we go through this process.  Pray for John that he will continue to thrive and have good nights.  And although I know he will have bad nights on occasion, please pray that the good nights far outweigh the bad.  Pray for Tommy and I, that we will know what is best for him.  Pray that we will see the signs if this isn't working for him and we will know the best way to help him.  And pray for the doctors as they will be making the ultimate decision for us.  Pray for God's wisdom and guidance so that when the time is right to have the trach removed, it will be obvious to us all.

Thanks once again for taking this journey with us.  We couldn't make it without your love and support and you will never know how much your encouragement means to us.  I hope to post more updates (hopefully all positive) as we continue on this path.  And with that, I will leave you with a couple of photos I took of John this week.

He sure gets excited about sweet potatoes

Yesterday was a very long day.