Happy Happy Joy Joy

Noodles tried a piece of cold, leftover cheese pizza today!!!  It makes me smile so hard I think the corners will crack! He wasn't skeptical of it, he didn't gag or anything. He signed that he wanted some (yes, he initiated it folks), and when we gave it to him he just started gumming it. Coincidentally, an episode of Barney was on in the background and there were several kids learning to make a pizza with Barney at a pizzeria.  

As for me, I'm still sick but I've been takin' it easy and the meds are starting to do their thing.  I'm low on energy & I have a repeat chest xray next week to see if the pneumonia is still there. And as my wise Uncle Jon suggested, maybe your body just needed you to slow down.  Or maybe you should tell your body to shut up!?*@! Time will tell.

But I digress, back to the man of the hour.  I caught myself saying out load, this is amazing.  This is the first time he's ever had pizza!!  What a "normal" rite of passage for most toddlers - its just part of living.  But I actually cried because the joy is so different.  Everything is so much harder for Lewis that I've felt this shame and inadequacy with respect to eating encounters- you know, we're the elephant in the room kinda thing.  I am so encouraged and excited for more practice at eating as we hustle to get ready for Markus' next visit in the Spring.  Today, I feel a lot less anxious as we slog our way through :)

Pizza Pizza_Lew's New Fave_12.7.2010 from Jenn S on Vimeo.

Egads

Pneumonia.  My fever won't leave me.  My ribs feel like they're cracked.  My lips are indeed cracked.  How am I supposed to stay hydrated when all I want to do is sleep. If I drink water I'll have to get up to go to the bathroom? Saturday night through Monday night I woke up in pools of sweat.  I didn't sign up for this. It just reminds me that I am getting old. On the flip side, I did need to drop a few pounds after the Tgiving revelry; haven't had a sip of anything except soup (Josh is a good hubby- he made me turkey noodle soup from the leftovers), Gatorade, water and lemon-ginger tea.

The first antibiotic didn't work and the Tylenol with Codeine wasn't helping me sleep-I was still coughing up a lung. I'm on a new antibiotic as of this afternoon and got some fancy cough supressant called Tessalon pearls. I've had to cancel so many fun "dates" this week.  Woe is me, I know, I'm just havin' a hard week. I just needed to "unthunk my glunk" as Dr. Seuss would say. I'm on the mend. Alright. I've got to go to bed now.

Picky baby

Jenn and I both had good visits with Lewis today. He continues to be pretty fussy - he particularly likes being held, upright, by Jenn or I, with the parent standing up, swaying back and forth. He gets upset if we sit down, transfer him to someone else, or change his position. Even then, keeping him from crying seems to be about 50/50. At one point today, he was calm and quiet for a minute, it turned out that he was pulling out his feeding tube, which then had to be replaced and x-rayed to make sure it was in the right spot. Well, at least he's paying attention, right?

Speech - making some progress with sucking, though the therapist still can't get him to root appropriately (that's when he goes looking for milk). He did better with the pacifier and sucking on a finger today and he's better able to control his tongue, which is important.

Physical - making progress here too, but still a long way to go. Lewis is no longer weak in his trunk - he's now showing what the therapist called "hypertone", which is sort of stiffness of the muscles. He's arching his back a lot and keeping his legs stiff. Apparently brain swelling tends to make babies quite flaccid at first and then then hypertonic, after the swelling goes down. The progression is typical, but it is this stiffness that was anticipated and needs to be treated with physical therapy.

Meds - Lewis' IV was taken out today, so he's done with the meds from last week's pneumonia. The IV was starting to fail. Unfortunately, they'll need to start a new one for his surgery on Friday, this one wouldn't last.

I also spent a some time with the physician who is head of the NICU today, to learn more about the need for surgery. Ultimately, it appears that there aren't other good options in Lewis' case, so the Nissen surgery is our only good choice. Hopefully, Lewis will be happier when we solve the reflux problem. In the meantime, he's made it clear that he knows what he likes, so we'll humor him 'till Friday.

Another Lazy Sunday

Lots of visitors today, but not much news. Lewis seems to be recovering from his pneumonia nicely. He's had fewer secretions and had to be suctioned less. They changed his antibiotics somewhat last night, to just Nafcillin (from two other "-cillins" or "-myacins", we can't recall which). In addition to Jenn and I, Hank (Bop), Joanne and Et visited. (Josh's Dad, Sister and Grandmother, respectively). Lewis slept most of the morning, but he gave Jenn a hard time most of the afternoon, and was fussy while he was awake.

The surgery resident came by to see if we had any questions. We didn't learn too much, just that they're likely to do the barium survey on Tuesday or Wednesday. That'll tell us how the upper part of Lewis' digestive system looks and whether his reflux is bad enough to need the Nissen surgery we've mentioned before. We've been told the Nissen and the G-tube for feeding are pretty much a given. Lewis is up to 29 ml/h on the continuous feed. Jenn also learned how to administer his meds through the feeding tube today. Depending on what happens with the surgery, this may be the same process for Lewis once he gets to go home.

When we left today, Lewis was asleep in the baby swing, but Natalia in the crib next to him is rowdy and keeps waking him up. When we called just now, the nurse was holding Lewis and Natalia was crying...

Two Steps Back

Rough day at the NICU for Lewis. Joanne (Josh’s sister) and Jenn arrived and heard that Lewis’ secretions had been sent off to be cultured…it looked like perhaps the antibiotics for pneumonia hadn’t done the job…or perhaps he had aspirated into his lungs again. Just after we arrived, Lewis vomited quite a bit. On one hand, this is good, because it shows he has the reflexes to do this. On the other hand, the vomit was a greenish color and ended up on Jenn. From this green color, we were pretty well able to determine that Lewis might need more antibiotics.



Respiratory - Lewis was struggling to breathe and sounded very congested. He was able to cough on his own (good!) but needed more frequent suctioning to get rid of the large amount of secretions he produced. He needed more help breathing and ended up with a nasal cannula (breathing tube) inserted again with 40% oxygen. (There’s 21% oxygen in the normal room air.) After having the extra boost of oxygen from the nasal cannula, he appeared to rest more easily.

They did an x-ray and determined that Lewis has pneumonia again. The doctor sent an order out to get antibiotics for Lewis, and suspected the infection had spread to Lewis’ blood, so they put in an order for a blood culture. Then they had to have an IV re-inserted so that they could administer the antibiotics. Lewis didn’t like having the IV inserted, so the first time, he kicked it out.

Speech - Lewis was exhausted and slept through his speech therapy. All in all, he was pretty “floppy” today and not himself; likely because he doesn’t feel well.

Physical Therapy - it’s also possible that Lewis just had a rough workout. The physical therapist said Lewis was awake and did a great job today with his therapy, which happened early this morning. His trunk development is still a bit less than optimal but his arms and legs are doing well, as evidenced by his ability to pull out his IV by himself.

Feeding - with the additional calories Lewis is being fed, his weight has stabilized. Jenn was able to talk briefly to the surgeon about the potential Nissen surgery, but until Lewis feels better and has a week of antibiotics in his system, the surgery’s on hold.

Last Straw - we heard from the surgeon that Kaiser, the insurance company, didn’t have a contract with Georgetown Hospital and that Lewis would have to be moved to Children’s Hospital (much farther away) to have this surgery. As you might imagine, this is NOT the best scenario for Lewis as he has great care at Georgetown and this is already his second hospital experience. (He was born at Arlington Hospital.) We are pursuing this right away with the insurance company because a baby with pneumonia shouldn’t be going anywhere.



Late day update - by 4:30, Lewis’ nasal cannula was down to room air (no added oxygen) at 2 liters and he was sleeping comfortably, at 8:30 he was awake and still doing fine.

Sleeping Beauty

We hit the hospital in shifts today. Jenn visited from morning to early afternoon, I spelled her at lunchtime and dropped in again after work. Lewis slept all morning - including all the way through his physical therapy. He woke up when I was holding him and screamed for half an hour, then promptly fell back to sleep when I passed him back to Jenn. I don't blame him :) The Doc thinks Lewis is looking better over the last couple of days that she's been on.

Speech - the therapist was happy with his progress sucking, which amounts to a few seconds at a time with long breaks in between. He's also doing better at accepting a pacifier, in small increments.

Respiratory - no progress on swallowing secretions, but Lewis is making progress on beating the pneumonia, his lungs are clearer and he didn't need suctioning as often today. His last dose of antibiotics is tomorrow night, then he should be done with his IV.

Feeding - Lewis lost a little bit of weight over the last few days, so they're adding some calories to the milk he's getting. He'll be having a consult with a pediatric surgeon over the next few days to see whether he's a good candidate for the Nissen surgery and the g-tube for feeding.

Later today, Lewis was sleeping so peacefully that I didn't want to pick him up and wake him. When he does get cranky tonight, he gets to try the infant swing.

More Uncertainty - Friday Oct 24

When we look too far past the present, in this sort of situation, the range of unknowns becomes overwhelming. We took this lesson to heart almost two weeks ago - Jenn and I stick to thinking about Lewis' condition today and we don't get past our hopes for tomorrow, and things go okay. Unfortunately, today's 'family meeting' with the NICU neurologist forced us to move outside that manageable window.

The neurologist's prognosis for Lewis is "very guarded". Physically he felt that Lewis has made progress, but still thought that he was 'hyperexcited'. The MRI showed lesions on the part of the brain called the Basal Ganglia. Apparently it is difficult to differentiate the severity of the lesions at this stage. The Doctor explained that this portion of the brain regulates communication to/from the rest of the body. He expects that Lewis' "degree of deficit could range from moderate to quite profound" and that we should expect that he will require "comprehensive services" to include physical and occupational therapy and a bunch of other stuff that I didn't catch. He wasn't really willing to define "moderate" or "quite profound".

Though he shows no signs of seizures right now, they'll keep Lewis on the phenobarbitol until he outgrows the dose, rather than lowering it. That should equate to about 4 to 6 months. The next MRI will take place in 4 to 6 weeks, which may tell us more.

Respiratory - today was the first day that the doctors referred to the infection Lewis has as pneumonia (at least in front of us). This isn't as big a concern as one might think, since Lewis has been on the appropriate antibiotics since last Sunday. It isn't hard to see how he got fluid in his lungs, since he still isn't managing his secretions (swallowing). On the bright side, he is breathing just fine without any support (other than occasional suction to remove the junk he doesn't swallow) and coughing more - which helps protect his airway.

Feeding - up to 24 ml/h of milk today, which is a full diet, so Lewis has been taken off of IV nutrition. We also learned that his NG tube is in his duodenum (below the stomach) which is why they think he's had fewer digestive problems recently. They may challenge him by moving the tube back up to his stomach, but that's a ways away.

Speech therapy - the therapist spent about half an hour showing us different ways to work with Lewis on stimulating his rooting and sucking behaviors. She feels that he's made some progress this week, but I didn't write down all the details, so that's all I can tell you.

The plan over the next week is to intensify all of the physical therapy and treat the pneumonia. If Lewis doesn't make progress on sucking and swallowing, it is very likely that they'll perform a Nissen Fundoplication and put in a gastric feeding tube, so that he can come home more quickly.

I just reread this post. The part about the neurologist meeting sounds awfully negative. I understand that the docs can't see the future any better than the rest of us. Their task, when informing parents, is just about impossible. I'm not angry with them, or trying to "kill the messenger" - it just seemed to be the best way to convey the tone of the meeting.

Lewis is sleeping peacefully at the moment and apparently threw quite a fit when the nurse woke him up earlier, including audible crying. Nice work little man.

Even Babies Hate Mondays

Okay, well, Sunday nights. Jenn and I went to visit Lewis after Nate went to bed last night. When we arrived, he was in the process of getting all kinds of uncomfy tests, up to and including a catheter and "lumbar puncture" (spinal tap). Before we got there, Lewis' temperature went up from normal (37 C) to 38.2 C (about 100.75). The change led the NICU staff to do a blood test (CBC) to check for potential signs of infection. Since his white cell count on the CBC was elevated, they were working on a full battery of tests. Most of these will take a couple of days to come back with conclusive results.

On the bright side, Lewis wasn't behaving any differently (he didn't appear to be sick). They put him back on antibiotics right away, and his fever immediately came down. This morning, he was active and awake and Jenn and I each got to hold him for a good long while. The preliminary results of x-rays and observation look positive (not likely to be pneumonia or meningitis) but Lewis will be even more closely watched than usual, until they can explain the blood count and fever.

Respiratory - still having problems with secretions, but overall respiratory strength continues to look a bit better. They are moving the nasal cannula down to 3 liters today (meaning that Lewis will do more of the work of breathing on his own)

Feeding - decreasing to 3 hour interval, still 30 Ml per feeding through the tube, they are pushing to get him off IV nutrition as soon as they can

Physical Therapy - Lewis had his first visit with a physical therapist (PT) today. She was pleased with the tone in his limbs. His 'trunk' (neck, shoulders, lower part of face) is still a little behind. The PT says that that is not unusual following the full body cooling, and that it may be exacerbated by the phenobarb. Lewis will be having PT 3x a week, for now.

The speech therapist is visiting with Lewis now, to evaluate him and work on sucking and other important baby skills. Oh, one more thing - apparently Lewis let out a pretty good war cry when they did the spinal tap. This is a great sign, since he doesn't cry and hasn't made much, if any noise, so far...