reuben's adventure

Yesterday Reuben had about 10 ounces of net fluid loss, and today he's on track to do the same -- this is fantastic, as it will help his lungs work better -- and get rid of his Dilbert-head.  He's down to 40% oxygen and statting in the 90s, which is also great.  They're going to leave him on the jet ventilator for now, since he's doing well on it.  He got to stop his antiobiotics today, which was nice.  And they're going to restart his breastmilk feeds -- they're trying with the tube straight into his stomach, but if he can't do that himself they'll put a tube into his intestines.  Because of all the morphine and vecuronium, he was having some stomach spasms that were preventing him from emptying into the intestine, so they can just bypass that if they need to.

He's having some nice "quiet alert" spells where he just looks around curiously, and it's wonderful to interact with him.  His eyes definitely seem to be brown, and somehow that really surprises me.  I didn't expect him to have my eyes.

Love,

Eric, Jonna, and Reuben

Reuben is having a good day -- he's statting at 100% on 70% oxygen, and they'll continue to wean both his o2 and his vent settings throughout the day.  He's peeing a LOT, which is great, because he needs to get rid of some of the fluid he gained while paralyzed.  All night he was contentedly wiggling his fingers and toes, even while he was sleeping.  It was very sweet.  They'll probably take out his chest tube today, since the pneumothorax is completely healed.  Tomorrow they'll likely put in a tube directly to his intestines so that he can start eating again (he's been getting all of his nutrition through the IV for about a week).  With the morphine and the paralytic medication, his poor little tummy has just given up for now, and this is how they'll get it restarted again.

Love,

Eric, Jonna, and Reuben

It looks like Reuben's pneumothorax (the tear in his lung) has just about healed, though they're leaving the chest tube in and open for now because it's still draining fluid, and any fluid Reuben can lose is good.  (He's started to get bloated again since the tear because he had to be paralyzed to prevent him from breathing while it healed).

This afternoon he started a "holiday" from the paralytic medication, and because he's been tolerating that well he's been allowed to stay off the medication.  They've even been able to wean his oxygen back down to 70% (he'd been up to 90-100% since the tear).  The nurses and doctors are always amazed at how quickly he comes off the medication (he was moving again less than an hour after they stopped the drip, whereas with most kids they would have expected up to half a day for them to begin moving).  I (Jonna) got to spend a wonderful afternoon with him mostly awake and looking around with his right, less swollen eye (he'd been laying on his left side to promote the inflation of his right lung, so the left side was too swollen for him to open his eye).  He was wiggling his toes and moving his fingers and even his arms a bit.  About four o'clock he fell asleep and has been sleeping most of the time since then.  I stayed with him again in case he wakes up in the night.

Much love,

Eric, Jonna, and Reuben

Two steps forward, one step back, a slip to the side.  I think he is dancing.

Last night was another setback.  Reuben developed another tear in his lung.  This time on the left side.  They were able to put in a chest tube to control the leak but his left lung has always been his good one.  His right lung is doing a wonderful job of trying to pick up the duty but it isn't as strong or "recruited" so they have to keep his oxygen pretty high and watch him very closely.  They all say that these lung tears heal up within a couple days after which he will hopefully be able to use both lungs again and start back on the path for recovery.

One small bit of good news is that the reason they feel the chest tube will work is that the pulmonary hypertension seems to be mostly cleared up.  It almost seems to me now (in my very unmedically educated way) that what is going on now is the process of recovery from the things which saved him while he had the hypertension.   His lung tore becuase is was "stiff" from being on the high speed vent for so long.  And a lot of his discomfort Jonna talked about is from weening him off the drugs he has been on.   Perhaps not a great bit of news considering that he is still very sick but it feels good to know that some progress is being made.  

I don't know why but this setback has been a bit harder on Jonna and I.  I guess it is only natural after this long, and we were feeling very good about his progress since he came off the ECMO.   So, while I know you all do, please think of us in your prayers.  

When Reuben came off ECMO, Sharon, one of his nurses, made us pom-poms that had little cheers written on each strand -- one of them said "Things 2 do today: 1. Breathe in 2. Breathe out."  Reuben is really taking this to heart -- this morning he was switched to a conventional ventilator, which assists him in taking normal breaths (his previous ventilator kept his lungs more or less constantly "inflated" and vibrated the tissues at high speed to oxygenate them; he could breathe or not, as he chose).  The machine ensures that he gets thirty deep breaths every minute, and he can take additional breaths if he wants to (and he does).  He's doing very well with the switch and didn't even need increased oxygen, which they had thought he might.

He's still not digesting his food very well, but this is apparently common when coming off ECMO and should resolve itself soon.

We're still not sure how best to be there to comfort him when he needs it, given that he can't make noise when he cries and we have to monitor him by watching his face -- I sat up with him last night from 12:30 until almost 5 because he was fussy on and off.  It's different than if a child were fussy at home and we could simply sit down on the couch and doze while holding and comforting him -- we have to stand up next to him or lay down across the room.  Plus he's frequently woken up by the various checks and medical things that need to be done.  We would really, really like to be there for him every time he cries, but I was completely exhausted today after getting only two hours' sleep and we (painfully) decided that I also need to get enough rest to make milk for him, and Eric needs to be able to keep going to work to maintain our insurance (the hospital bills are starting to pour in with totals the insurance company owes (but luckily not what we owe) that look like phone numbers.)   We're going to try having me stay at the hospital every other night and see how that works.  That way he'll have someone with him for 36 of every 48 hours.  It's not how we'd really like to do things, but none of this is, and we've learned that we just have to do the best we can.

Love,

Eric, Jonna, and Reuben 

Reuben is having another great day!  They weaned his oxygen to 40% and are planning to put him on a different ventilator tomorrow.  We still won't be able to hold him or nurse him, but it will start teaching him to breathe more normally. 

He was wide awake, in the "quiet alert" mode, for most of the afternoon, just taking short cat naps.  We think his eyes are brown, though it's still a little hard to tell.  He's very curious and interested in everything, and the lights on the monitors seem to attract his attention though they're too far away for him to focus on.

I (Jonna) am staying the night with him -- now that they're allowing him to wake up and cry, I hate to think of him crying alone.  The nurses will give him sedation if his blood pressure goes up too much, but he can cry quite a bit before that happens.  The only difficult thing is that it's hard to know if he's crying because of the trach tube in his throat -- he can't make any sounds so you can only tell he's upset if you look at his face.  I'm going to ask the nurses if they can set the alarm on the monitor to go off when his mean blood pressure gets to 75, because that usually means he's crying, so that I can wake up and comfort him, but I'm not sure they're allowed to do that.

A little bit ago he was trying to go to sleep, but he could only seem to stay asleep for five minutes or so before he would wake up again, and he was working himself into quite a state, so the nurse gave him some atavan.  That gave me a chance to come up to eat dinner and go for a walk.  Not all moms are lucky enough to have sedatives to give them time off:).

Love,

Eric, Jonna, and Reuben 

Reuben is having another great day.  He's down to 50% oxygen on the ventilator and they're weaning the nitric oxide, too.  They've weaned a lot of his medications, including the sedation, because he can now tolerate being awake without dropping the oxygen levels in his blood.  It's great to see him wiggling his fingers and toes and even looking at us.  On the flip side, it's hard to see him make crying faces and motions (the trach tube goes between his vocal chords so he can't make noise) and not be able to pick him up and hold him to comfort him.  We just have to remind ourselves that he cries because babies cry, and not because he's in pain -- if he were, his blood pressure and heart rate would rise and they would go ahead and give him more sedation.  It's great to see that there really is a person "in there" who will one day be able to interact with us more.

Love,

Eric, Jonna, and Reuben

All the doctors are very happy with how Reuben is doing.  He isn't as reactive as he was -- he tolerates being touched, noises, etc. fairly well, though we're still careful not to do too much around him.  He doesn't seem to need as many medications as he did before he went on ECMO, and he's maintaining good stats at 60% oxygen.  So hopefully we'll keep going, slowly and steadily.

Nate (the neonatology fellow who's been on duty all month) said we're probaby a third to half the way through the marathon. 

Love,

Eric, Jonna, and Reuben

The ECMO surgery went great!  The surgeon was also able to remove a hematoma (sp?) that had developed at the canula insertion point in Reuben's neck, so that's good news.  He's on 60 percent oxygen, but statting in the 80s or low 90s, which is great, and he's not on as many drugs to regulate his blood pressure as he was before the ECMO, which means he's better at doing it himself.  They've reduced his sedation considerably, and he's wiggling his fingers and toes quite a bit.  They still don't want him to move his head until the canula wound in his neck begins to heal, but he seems to be pretty willing to keep that still.

We feel so relieved!  The doctors have been careful to remind us that there's still a long way to go, but perhaps this is the turning point!

Thank you, as always, for all of your comments, thoughts, and prayers.

Love,

Eric, Jonna, and Reuben

Reuben had another trial off the ECMO today and did fabulously!  In fact, he did so well they are going to remove the ECMO (called decanulating) at 2PM.  So put out lots of good thoughts around then.