Anxiety

I really will get back to writing about this PT thing. I’m so very excited about it. And for a while, that was enough to stave off my anxiety.

No longer.

I try to tell myself that Mr. A is twice as big, more than three times as old, surely more than four times as strong, and five times as amazing as he was when he last had surgery. But I’m so very scared.

The first time A was intubated was shortly after birth. The first time he was extubated was not even a day later. Shortly after I’d been kicked out of the NICU, I got a call in my room. It was the neonatologist, telling me not to be alarmed, but they were going to have to re-intubate him, so I shouldn’t be surprised to see him on a vent (but it wouldn’t be the oscillating ventilator, just a regular one). I’d read up on preemies, what with being told I would likely deliver at 26 weeks, so I wasn’t all that shocked. Two steps forward, one step back, blah blah. So I went to his next cares, and was indeed surprised. Because no, he was not on the vent. Yes, he was working hard, but he was holding his own (with the help of the Vapotherm).

The second time A was intubated was when he was just over 2 weeks old, for an MRI. He was extubated immediately after, with no complications.

The third time A was intubated was on his one-month birthday, when he had his first surgeries. They couldn’t extubate him. They tried twice, and he extubated himself once. My husband and I walked in one day to find him grey, surrounded by doctors, nurses, and staff, while they tried to replace his tube. It was awful. A week came and went, and many concerns were raised. But, I’m somewhat ashamed to say, I wasn’t all that concerned about the vent. Yes, I hated that I couldn’t just pick him up and hold him. But he’d gotten off it twice before, he could do it again. And it was becoming clear that something was wrong with his gut, as he still couldn’t handle even a trophic feed. I was more worried about that–worried that they’d seriously fucked something up during surgery. (This was when one neonatologist informed me that A would never be on full feeds. I countered with, “Well, he was, prior to surgery.” This news surprised him, but he came back with, “Sometimes kids with syndromes just get worse.” This was the first–but not last–time I felt like medical professionals weren’t doing what they could for my son and were not interested in doing any more, because of his unique chromosome. I mean, maybe sometimes babies just get worse, but when you have an intervening event, such as–oh, hmm–major open abdominal surgery, maybe you shouldn’t just chalk things up to a few missing genes.) Then A began having frequent bradycardia episodes, and they eventually theorized that the tube was irritating his vagal nerve. They yanked it for a final time, and it worked. All told, he was intubated for about 10 days.

The fourth time A was intubated, he was 4.5 months old, and having his second round of surgeries. I was so eager for the Nissen, as it would (I assumed), save his life. And let me tell you, it did. I haven’t had to give my sweet baby CPR since he got his Nissen. He only coded once afterwards, and it was because of the damn tube. (It got jostled during a transfer from his bed to the table for a fluoroscopy, and was kinked or pressed up against the side of his trachea or something. Repositioning the tube was really all it took, and the code was over almost as soon as it began–the first responder was, by pure coincidence, our favorite fellow, who wasn’t even working the PICU that day, and who said, “Oh no, is this A??” upon seeing my baby, immediately making me glad it was him, not just for his expertise, but because he recognized and cared about my child but still, one of the worst days of my life. He took charge and saved my A.) But once again, they were unable to extubate him. What should have been a simple stay turned into a 35-day nightmare. He caught pneumonia from his vent. When they were finally able to extubate him, he was on such high BiPAP settings that they were unable to feed him (it forces air into the tummy as well), and his PICC line (which we’d had at home for 2 weeks, and then was changed and then changed again) got infected and he got septicemia. And I kept trying to explain that he was mad, so very mad, and in pain, and that’s why his breathing was so labored. And I was ignored, until finally I wasn’t. (Which I have written about before.)

So I will be a better advocate for him, this fifth time of intubation. And he is bigger, stronger, older…and I just hope, so very, very much, that it will be enough.

We have to check in at 6am on Monday. I don’t know how I will make it till then, and through the surgery itself. We have never been called back to the recovery room, since he has always been sent back to intensive care, following failed extubation. Please please please, let us see that room.

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Intensive Physical Therapy

For quite a while, I wasn’t sure if Mr. A’s motor delays came from him being unable to perform the task, or him simply not caring. Back when I used to take him to Feldenkrais therapy, his therapist would try to get him to roll by holding toys and such. He had zero interest. Frankly, Mr. D, who could roll, would not to it to reach for a toy in the manner she was forcing, which is part of the reason why I realized she was simply out of her depth with children, much less a special/amazing one. He did learn to roll, belly-to-back about 7 months, back-to-belly about 10. But then he wouldn’t continuously roll, as in, to travel around the room, for quite some time. When they were about 6 months, we hung out with their cousin, who is a month older (though he was full-term, which mattered a lot more then than it does now). He was sitting all by himself. I thought “Huh, I wonder if D could do that.” Put him into sitting, and what do you know–he could tripod and progressed to full-on sitting within a week. A was different. We worked and worked and worked, and when he suddenly realized he could play with his toys (which also required him wanting to play with said toys) better while sitting than while lying on his back, side, or tummy, he began to work. And work and work and work. (And get sick, lose all progress, gain it back, and then get sick again.)

Now we are working on standing. Out of nowhere, he surprised me by doing something of an army crawl. I couldn’t believe it, called my husband in tears. He is not very good at it, yet. It requires so much effort. He doesn’t know how to work his limbs. Half the time he ends up flipping onto his back, then flipping back over, only to repeat. He tries to use his left leg for leverage, since his arms aren’t very strong. (He still can’t hold his abdomen of the floor…though he never really saw much point to it, I dare say.) And I think, from the way he watches Mr. D, that he wants to walk.

I think these skills–sitting, crawling, walking, talking, writing cursive, etc–were all the same to him. I think they fell into the category of “other people do this”. D was pulling to a stand, cruising on furniture, sitting, crawling, all before A really became aware of him in that “I think he might be a person/I think I am a person” way. But walking has happened within the past 3 months. Suddenly, D can appear out of nowhere, grab the toy A was playing with, and walk off. Just like that. When he couldn’t, before. I think A really gets this. I think he understands that he, too, might be able to walk.

This is something I have discussed at length with his PT/OT through Early Intervention. She agrees with me. He now has the desire, but not the ability.

Enter a physical therapy practice about 45 minutes south of us. This place uses fancy types of therapy, but really what it is is some sort of boot camp/torture session. For 4 hours a day, 5 days a week, for 3 weeks, your child has physical therapy. That is a lot of therapy. It is much-discussed on the local Facebook page I belong to, for parents of awesome kiddos. Everyone who’s done it says the same thing: it is incredibly difficult, but very worth it.

Because I feel like the time is right, and also in order to do something concrete rather than obsess about A’s upcoming surgery, I began doing serious research. I called our insurance company to see what they would cover. I set up a consultation. I got excited.

And then, a mom who was putting her kid in it for Round Two (or possibly more), expressed dismay. Her favorite therapist had left the practice. Several other moms chimed in–oh no, not him! He’s our favorite! He’s the one who kept everything running. He was the best, hands down.

He is opening his own practice, not more than 5 minutes from my house.

I scheduled a consultation with them. And I’ll give my thoughts on both places, as well as our decision, later. Once again, I have run away with a post and am out of time. (Which is to say, I am done pumping breast milk for the night, and am going to bed!)

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The dreaded justavirus

When D’s nose started running about 10 days ago, I promptly freaked out. My mother, grandmother, aunt, and several others I know have had an awful clod/flu thing that lasted about 3 weeks and made them feel like death. I did not want that for Mr. D, and I especially did not want it for Mr. A, given that he gets surgery on the 25th *and* had to go to the ER (as in, our pediatrician sent us there when we went in for a check…) with what turned out to be parainfluenza in September, and was full-on admitted to the hospital with what turned out to be rhinovirus (aka “the common cold”) in December.

Sure enough, a few days later, both Mr A and I were sick. But it’s not whatever awful bug everyone else had (which means my poor mother is actually sick again, since she came over to help on my sickest day, figuring she was immune…not so much). Yes, my nose is still stuffy and both the boys are plowing through Boogie Wipes, but it’s not that bad.

Mr A is handling it remarkably well. His reflux is acting up (which…you try swallowing the amount of snot he has, and get back to me on that) and he is more tired than usual, but I’m nowhere near calling the pedi, let alone taking him in.

Surgery, as of yet, is not cancelled.

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Them bones, them bones, them jaw bones

When Mr. A was born, nothing was said about his jaw. It was brought up later, when discussing Pierre-Robin Sequence (PRS), but no one could decide whether he had it or not. So, not much fuss was raised over his probable micrognathia. When he was just over 2 weeks old, he was transferred to the children’s hospital, where the doctors went about trying to find every possible thing wrong with my son. (No, really. Name an organ or system, and they examined it, usually multiple times, usually with high-tech equipment. I grew to hate the neonatologists and the NPs as well, as they never had any answers or seemed to want to “fix” anything, just to order more and more studies.)

Luck of the draw gave us Dr. M as an ENT–he was on-call for NICU the day they decided to delve into “dysmorphic facial features”. He offered an opinion on Mr. A’s jaw: micrognathia, but not very severe. He gave A his first (of many) bed-side scope, and said his tongue did fall back, but not so much that he was worried about it. He recommended side-lying, which we were already doing for reflux, and said he’d talk to us again after the sleep study. At this point, Mr. A had been on room air for about a week. The sleep study revealed both central and obstructive apnea, and they decided to put him back on O2 (just 1/8 of a liter, and we were discharged on 1/16) as he was dipping down into the mid- to high-eighties more than they’d like. Dr. M came by as promised, and said he didn’t think it was A’s tongue causing the obstruction, but perhaps something else in his airway, and said he would like to do a rigid broncoscopy when A had surgery to fix his intestines and insert his G-tube.

When your child is operated upon by multiple surgeons during one “go”, each surgeon comes out to talk to you after finishing their part. And so it was, that on A’s one-month birthday, Dr. M told us he didn’t really see anything to explain the obstructive apnea. He said his trachea was slightly narrow (but qualified this with, “and he is still very small”–true both in terms of weight (about 4.5 pounds) and age (still should be in utero)), his larynx might be small (again, same modifiers apply), but that he didn’t really know. It certainly didn’t seem like his jaw was to blame, and so jaw surgery was taken off the table. When the days passed and they were unable to extubate A, Dr. M scoped him again, and again offered the same opinion, but did say he would consider it. Luckily, we were able to get him back on the nasal cannula and airway fears were swallowed up with fears that his intestines would never work again. (One charming neonatologist even informed me that “sometimes kids with syndromes just get worse, so…” despite the fact that non-functional GI tracts are not in any of the (sparse) literature regarding A’s chromosomal deletion.) (His intestines just needed some time, and work just fine, thankyouverymuch.)

Fast-forward 3 months, to Mr. A in the PICU. He had had a Nissen, hernia repair, and ear-tubes (hi, Dr. M! Hi, 2nd surgical scope!), and was once again proving difficult to extubate. Dr. M gave him at least 2 scopes. He also developed the habit of popping by to say hi, particularly when there was going to be an extubation attempt. Dr. M was there when he was finally successfully extubated, and helped with suggestions of how to encourage A to breathe (positions, nasal trumpets, etc.) And when A was still on BiPAP (and high settings at that), and everyone wanted to trach him, Dr. M stopped by again, for another scope and a discussion.

This scope is the one that is the deal-maker, by the way. I watched him examine every angle–in deeper, shallower, left, right, all the while telling the nurse to thrust his jaw forward, release, thrust, release. The “thrust” mimics jaw distraction–giving more room in the lower jaw where the tongue can go, instead of falling back. But Dr. M did not see any difference whatsoever in the thrusted vs. relaxed positions. He told me he did not think jaw surgery would help A. He said his jaw really wasn’t that small, and didn’t seem to affect his tongue, which didn’t seem to be causing the problem.

This was probably day 28 or 29 of what should have been a 3-4 day stay. I had been told all sorts of dire things about my son. One charming attending told me, when I asked him what exactly he meant by saying he was “worried” about Mr. A, that: “The sickest children in 6 states come to this hospital. The sickest of those are in the PICU. So when I say I’m worried about him, I mean he is the sickest of the sickest of the sickest.” Thanks, asshole, but what I really meant was: are you telling me you think he will die. Anyway, suffice to say I was a wreck. I liked one fellow an awful lot, and had explained to him how A grew tachypneic when he was angry or upset. When they would attempt to wean him from BiPAP, they always turned things back up because his respiratory rate would sky-rocket. That’s because, on CPAP, you’re allowed to control your own rate of breathing, whereas on BiPAP, you’re really not, very much. They would tell me that he would never be able to sustain that rate, and turn things back up, as Mr. A had a sign declaring “CRITICAL AIRWAY” over his bed. (He’s hard to intubate, and they didn’t want to do an emergency intubation. Though some of those trach-happy residents probably did…) But I knew he was just mad. I mean, he developed a pressure sore from the BiPAP mask that I pointed out, and that you can still see, almost 8 months later (though much, much less obvious). He was in pain. He was mad. He was detoxing from the extremely high doses of sedatives he’d been on while intubated. Oh, and he had fought off ventilator-aquired pneumonia and central-line-aquired bacterimea.

I wasn’t able to properly advocate for A, and I’ll never forgive myself for it. But Dr. M, Fellow G, and I worked out a plan. We would risk the emergency intubation and just go to CPAP until he started to desat. We would give it the night. If things didn’t look stable, we would do jaw surgery in hopes of avoiding a trach. Dr. M was largely responsible for getting the attending to agree to this plan.

And by morning, A was on minimal levels of CPAP, ready for highflow. Less than a week later, he was home.

So, obviously, when we had our pre-surgery consultation in January, I was anxious. I wanted to be sure this stay won’t be like the last (surgical) one. We worked up an excellent extubation plan, and I once again asked about his jaw. Dr. M said he was extremely glad we hadn’t done the surgery, and that A’s jaw had done a lot of catch-up growth, and he no longer considered it clinically significant. He said it might not totally catch up, but that would be a cosmetic issue we could address after (or during) puberty if we desired.

So I thought that was the end of the jaw.

Ha.

This tale is dragging. Suffice to say, Dr. M strongly disagrees with Dr. S. We’re siding with Dr. M, as he knows A’s airway better and has looked and looked and looked at the jaw issue. I’m nervous we’re making the wrong decision, but the surgery is extremely painful and required 2 separate operations, plus then the palate repair, and I just don’t want to subject A to more pain and suffering and put off repairing his palate (and thus ending the constant food/vomit/everything-in-sinuses and maybe, possibly, hopefully, help him learn to speak) any longer.

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Clinic recap

Things started off so well. The first specialist we saw was the feeding/speech therapist. She’s the whole reason I wanted A in the clinic—everyone who is anyone (or who is raising anyone) agrees that she is, hands down, the best oral motor/feeding guru around. And impossible to get in to. Our conversation was pretty much like this:

 

Me: He really needs help. We’ve seen 2 speech therapists with EI, and frankly they’re useless. Our PT/OT is awesome, but I get frustrated spending our PT/OT time doing feeding, because he also needs to learn to crawl and, apparently, pick up a Cheerio and put it in his mouth (before I extract it in horror). (I haven’t blogged about his evaluations yet. I will. Suffice to say: really? Cheerios aren’t going anywhere near his mouth, thankyouverymuch.)

 

Her: Oh, you see Ms. PT/OT? I love her!

 

Me: So do we.

 

Her: Yeah, she’s one of like 3 people who know anything about feeding. I’m pretty picky when it comes to standards of care.

 

Me: Well, so am I.

 

Her: Great, well, I’ll refer you to myself and see you twice a month to start, maybe once a week or possibly even once a month, depending on how things go. Come in 3-4 weeks after his palate repair.

 

And then it was boring: dentists looking at his teeth and telling me his mouth looks fine so far, a social worker asking me if I am getting enough support, and would I like more information about anything, an ENT saying the ear we thought might be clogged is clear, but the other tube might have some dried wax in it, but everything else is fine, etc.

 

Then our handbasket decided hell seemed like a nice place to visit.

 

The craniofacial surgeon, Dr. S. He was ‘getting a cup of joe’ and then ‘we have no idea where he is’. Then he walks in and says, “Nice to meet you.” I explained that we’d actually met before, in August or September. He didn’t remember, and I’m not surprised. We waited over an hour for our appointment to see if Mr. A needed a helmet, and he took one look at him, declared him to be at the level of a 3-month-old developmentally (which, really? From a tired, cranky child who’s been waiting, you deduce this in one glance), didn’t even feel his sutures, and said, “He just has an odd head shape, no helmet needed”. He was, hand to God, in the room for less than 30 seconds.

 

Anyway, he briefly looked in A’s mouth and said his palate was unrepaired (I know) and V-shaped (everyone agrees on that now). He asked me when I would like to fix it. I said it was already scheduled, for March 25th. He got rather upset, and asked how on earth we could have scheduled it without even seeing him. I said his ENT was doing it. He was nonplussed. I guess he assumed he would be repairing it? Why, I have no clue. And it also, frankly, told me that not only did he not read A’s (extensive) medical record, he also didn’t look at our “important notes” section of the intake form, where I listed this very information.

 

He then asked me when A had last had a sleep study. (In the NICU, probably about a year ago exactly.) He asked me if he snores. (Yes.) He then said:

 

Well, you really should have one done. He probably has very bad obstructive sleep apnea, and it will get worse after the palate repair. Also, in typical kids with micrognathia, we see catch-up growth with the lower jaw. I don’t think we’re going to see that with your son. In fact, I think that, regardless of what the sleep study shows, you son should get a jaw distraction done before you even consider repairing his palate.

 

Any questions?

 

My heart just about stopped. He was shooing us out the door before I could decide whether to cry or not.

 

Jaw distraction has haunted us, taunted us. I thought, in January, that we had finally closed the door on it entirely.

 

This is longer than I thought it would be. So, to be continued, I suppose. I’m tired and blogging while I pump, and the well has run dry (in both senses) for the time being.

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Cleft Palate Clinic

We have our first visit to the craniofacial clinic today. Although we were originally referred (and even met with a surgeon from the clinic) at the hospital where I gave birth and the boys spent their first two weeks, the specialized children’s hospital Mr. A was transferred to and then spent nearly 2 more months chillin’ in their NICU…well, they decided that we just didn’t need to go.

Or something. I was told things like “politics” and “you’re already seeing an ENT, so…” and things that just didn’t add up. It slowly occured to me that they just didn’t want to waste precious time and resources on my son. Getting the official confirmation that yes, they thought he would die before he needed his palate repaired or any of the other services (feeding! for christ sake, FEEDING!) was the final kick in the pants to start this blog.

And now, in just over 6 hours, we go. They told me to expect 2-3 hours since it’s his first time, and that he might not meet with all the specialists. Let’s skip the dentist but NOT the SLP, ok?

Anyway, I’m nervous as all get out, and I’m not sure why.

And in a month exactly, he gets his palate repaired. Terrifying.

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Teeth Grinding

In addition to getting the measles-like rash from his MMR shot, Mr. A has also gotten his third tooth: top right center. He is putting it to use, grinding away. I have to say, when Mr. D (who currently has 7 teeth!) went through this phase, I hated it. And it’s still nails-on-a-chalkboard. But all I can think is: check out my man’s oral motor skills!!

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