Not Appendicitis

May 23, 2005

That’s great news, as yesterday was marred by a trip to the doctors followed by the emergency room for Jen. We were out a mall yesterday when Jen started complaining of abdominal pain. Shortly thereafter, she could barely move because of the pain. I rushed her to the doctors (with H, non-the-wiser, in tow) and for the next 6+ hours we began yet another hospital oddysey… because, you know, we haven’t had enough of those in the past four months. After a CAT scan, the doctors concluded it was not her apendix, but could be ovarian cysts… still no good, but not life threatening.

So, after that scare, I’ve got a healthy Jen back, and Hayes has a healthy mom. Thank goodness! I’m hoping that on Hayes’ 5th month birthday we have an easier go… to0 many more of these is going to send me into a panic attack! But, as they say, all’s well that end’s well. Happy 4 months, Hayes!

I Apologize on Behalf of Children’s

March 11, 2005

Oh wait. That’s the end. Let’s start from the beginning.

What’s worse than having your child treated as a possible abuse victim? The x-ray actually uncovering what appears to be abuse.

Oh, too far. That’s the middle.

Wednesday night, after I wrote, I had a fitful sleep with a vivid, recurring dream. I dreamt of a bespectacled (I always wanted to write bespectacled. Bespectacled. Bespectacled. Excellent.) man with grey hair and beard. I was arguing with him about the necessity and merits of doing the full body series of x-rays on any child with an unexplained head trauma. How many times does this actually uncover an abuse that you would not have otherwise suspected, I asked him. How many times does the child have no outward signs of abuse but just an unexplained head trauma that the x-ray helps you see actual abuse? 1%? He shook his head at me in a sorrowful disappointed fatherly-type way.

“No,” he responded. “More than 1,000 times a year.”

I felt awful that I was getting so upset about this. Surely it was worth our trauma and the unnecessary radiation to save these children. I then thought about this without the help of my dream invented old man.

Bullshit.

This is wrong. They need to fix this policy. Have we gotten to a point where in order not to profile people or waste more time in the insanely expensive world of medicine, that instead of asking questions of parents and the doctors that know them best, we just send them all to get x-rays to prove their innocence?

But when did it cross this precarious line? Why did I feel my rights as a parent were so needlessly violated?

I left for Children’s on a mission. Our child would no longer be treated as if he were a possible abuse victim. We would be vindicated quickly, get our MRI and get the hell out of there.

Oh, how wrong I was. The day I thought would be turned into top-5-worst-days-of-my-life.

I arrived at the hospital at quater to 8. Jen was tired. Really tired. She — forgive me Jen — looked awful. Hayes was great. He had slept well. In fact, our roomate a 2 year old with a chronic kidney condition, had not slept as well, but it didn’t seem to bother Hayes.

Jen told me that the x-rays had all come back without incident. No one was worried, she said.

Jen then told me she had spoken with the resident we had first met at Brighams. She had told the resident that she didn’t appreciate their diagnosis. That Jen had read the hair braiding case on the internet that they had mentioned as proof that small head trauma had caused said injury. It was not simple hair braiding but corn rows. On a two year old. It wouldn’t have been suprising if a lot of force was used. Further, if this truly was the case, then why was it not more common and why did no one know WTF was going on, Jen argued. The resident apologized (the first and least impressive apology of the day), saying that she hadn’t thought of it that way, and perhaps their diagnosis was off-base. She said the more experienced team would be in by morning and would discuss it with us then.

All the nurses were enamoured with HBomb, calling him cute. Stopping in to see him for no reason. Saying hi. Everyone loved Hayes. But when we asked when those nurses when the doctors were going to come, they were all strangely vague and noncommital.

Finally, we got a straight answer. Our medical group, Harvard Vanguard, had their own attending doctor, and everyone was waiting for him to come see us. They were a bit intimidated by him.

When he showed up at 11:30, I could see why. He was the craggly old veteran type who made statements that began with ‘In my 35 years…” He was very informative, but seemed at times to be more interested in hearing himself talk. I was not going to let this guy make us feel worse. I asked him about the necessity of the xrays. He launched into what would become the staff matra: “If you can pull yourself away from this personally…” No I can’t. Anyway, he explained that the radiation from one x-ray is really not much worse than spending a day in Boston. Ok, that wasn’t that bad, right?

“I ‘ll cut to the chase, I’m a very straight forward man,” he said to us. “There is a slight abnormality in the X-ray of the tibula. A slight abnormality. One that could be caused by inflicted trauma. We will need an additional x-ray of that to take a look.”

To borrow a phrase from Jon Stewart, whaaaaaaaa aha ah at?! How could this continue? How could they find something that makes Hayes look like an abused kid” Whaaaaaaaaaa aha ahaaha?

We were stunned. The doctor continued with, “This is not a popularity contest. Everyone here thinks you both are great, but when there’s signs of…” I turned off. I tuned back in for: “There was this scruffy woman in here a while back….blah… blah… DSS and the police got involved…. blah… blah… blah… turned out an uncle had tripped and his knee had landed on the babies head and he hadn’t told anyone!”

And what the fuck did that have to do with us? Were DSS and the police going to get involved? How could this be happening? I felt like I was on one of those Hallmark channel or Lifetime (not that I watch those, I actively block that channel with my cable parental controls) movies starring the mom from Growing Pains. This couldn’t be happening. This was happening.

We were both instantly transformed into jello. My brain started racing. I have a weird reflex in my ankle, one that caused my last doctor to collect the entire office staff to see it in action. I asked the doc if this could be heriditary, and if so, perhaps it was the cause of this irregularity. He scoffed at me and proceeded to launch into an explanation of how reflexes work. Before he left he told us that he had asked his good friend, Mark R. Proctor, MD, a neurosurgeon at Children’s to take a look a the CT scan. He said that he really trusted his opinion, and perhaps it would shed light on this situation.

From there we were shepparded down to the radiology department for the MRI and the x-ray. Things were still sinking in. How could this be happening? They put us in a little room with a nurse who was very nice.

Hayes was bawling. Part of the MRI procedure is that the patient can’t eat for 5 hours prior. I’m sure this generally doesn’t pose a problem for most adults, but for a 6 week old that loves to eat and his parents… this was hell. Not to mention Jen and I were on the edge.

The nurse asked us if we wanted to be in the room with Hayes, went through the things we couldn’t have on us to be in the room and made us fill out more paperwork. Two more nurses entered. There was a loud commotion outside the door. Hayes was bawling, The nurses announced that they would have to make another IV pick, as the one that took them three tries the night before was no longer working. Jen’s eyes glossed over. Hayes bawled.

“I can’t be in the room with him,” I announced to no one in particular. “I need to get out of here.”

“Me too,” Jen chimed.

The nurse looked like a deer in the headlights.

“Oh you can go wait in the waiting room, and we’ll come get you.” She said, as Hayes struggled on my lap to get away from the nurses proding him.

“I need to go now.” Jen said. I handed Hayes to the nurse and got up with Jen in tow. We barely made it out of the room before Jen started to cry uncontrollably. I wrapped my arms around her and began to cry too. We stood in the middle of the hallway crying. The anesthesiologist who had been attending to us walked by.

“Are you ok?” she asked.

“This whole thing has been atrociously awful!” I snapped back.

We tried to find the waiting room, but were too far preoccupied in thought. Another nurse found us, as we were now crying uncontrollably in a much more public place.

“Do you need a sedation room?” She asked me. At least I think that’s what she said.

“No!” I snapped, clutching a crying Jen in my arms. “Get away from me.”

The nurse looked frightened. I thought it best to find that waiting room, so we stumbled down the hall until we came to it. We sat down. Jen was bawling. A family came in with twins and a 3 year old girl. The kids stared at us, smiled, talked. Thank god for them. I brightened up a bit and tried to pull myself togther. Tears still streamed down Jen’s face. There was going to be hell to pay when they vindicated us. They need to change this policy. A sign next to the door had a photo of a smiling kid with a caption that read something like, “We want to make this experience great for both children and parents.” Bullshit.

“Are you Hayes’ parents?” A male voice asked.

I looked up to see a doctor in the doorway.

“Yes.”

“I’m doctor Proctor, a neurosurgeon here at the hospital. You’re attending physician asked me to look at Hayes’ CT scan. Everything looks fine. It’s a subgaleal hematoma. The cause was very likely cephalohematoma caused by the long labor. Typically it’s noticed shortly after birth and is absorbed back into the body over time. It’s not very common for this to happen, but we see these things about once a month.”

We were stunned.

“Your the person we’ve been waiting to here from!” Jen blurted.

“Then why are they treating him like an abuse victim?” I asked.

“Sometimes Social Services get’s a little too worked up about those things,” he scoffed. “This was not caused by you. I will go to the mat for you on this.”

To the mat. With that, he left.

“Maybe he’ll call them and tell them to back off.”

“Yah, right.” Jen said. “Do you really think he’d do that?”

“That’s what I’m going to think, because that’s what I want to think.”

But what a really wanted was an appology. A good one.

Suddenly, my head snapped to the right. I heard Hayes crying. There were lots of babies crying. But I heard Hayes. Anyone who has ever had a baby in room full of babies knows what this is like. Jen heard it to. Several minutes later, they came to bring us to the recovery room. Hayes was in there, all doped up. The nurse explained that it usually takes several doses of the Nebutal to put a baby to sleep, but with Hayes it took just one. They said he must be really tired. Duh.

After a few minutes they escorted us back up to our room. Finally, after 30 minutes or so, the second social worker came in.

“You look really exhausted, “she said to me.

“I’m done,” I responded. “You can talk to my wife you if need information. But you don’t want to talk to me.”

I had had it with this shit.

Jen explained what had happened. How we felt we were mistreated and mislead and never quite given the whole story. The social worker used the hospital mantra again, “if you could just take yourself away from the situation…” That’s about when I snapped.

“No! No, we can’t Everyone keeps saying that. And we can’t. You probably couldn’t either. We’ve done nothing wrong, yet everyone is treating us with what seems like sacharin sweetness.”

This sent the social worker into defense mode. What were we worried about, that they would call DSS? No one has thought that (not true). Everyone here thinks you are doing great.Blah, blah.

I took it upon myself to explain to her what I think they should do to make this easier on parents. I’ve had more time since to think about it and I would ammend it. Much like Hayes’ prognosis was constantly ammended. I told her that they took away our ability to ask informed questions. I told her that we felt taken advantage of. That no one really explained what was going on and why. They kept giving us the vague answer of “this is sort of SOP.” I told her they needed to have a sheet to give to parents that not only explained the possible abuse procedures, but also told us why they did it. I also told her I wanted statistics about how many abuses this kind of thing uncovers when there is only one sign of trauma without any sort of bruise or anything else that makes it look like it was abuse. Finally, I told her we took this personally. And asked her how any good parent wouldn’t.

That’s when the tide turned. She said she would talk to the doctors and figure out what was going on and give us a timeline. And she did. Our attending physician was going to be back in two and a half hours to discuss the findings. We would have to wait until then, but she would do what she could to speed this up.

Before our attending returned, a resident showed up with the findings. No brain problems. Everything up there was fine. No fracture. Everything down there was fine. I launched into my plan to make this sort of thing easier on scared parents. He listened. Tried to explain why they had done it and appologized.

But the best was yet to come.

Our attending showed up.

“What have you heard?” he asked.

We told him.

“Yes. Everything is fine. The takeway here is that his brain is completely normal. I would like to appologize to you on behalf of Children’s Hospital. You can thank Dr Proctor for this. He called me after he met with you and told me to call off the dogs. I want to appologize on behalf of the entire emergency room team. They could have easily called the neurosugeon, and should have when they found out this wasn’t brain trauma. That’s what needs to be done. They will be hearing from me and this is going to change. You might not believe it, but I was the first person to run the emergency room here. We’ve all learned something here from this. In my 35 years I have never seen a subgaleal hematoma manifest itself in this way.”

He went on and on and on… then said “We’re discharging you.”

HOORAY! VINDICATION!

We got home last night about 6PM. To celebrate we had a 1979 Chateau Cos D’Estournel and a 45 day old Hayes. The Cos D’Estournel was excellent. Hayes, well, he is the best.

At Children’s

March 10, 2005

Hayes has been admitted to Childrens for observation. Mom has volunteered to spend the night, as they only allow one parent to. I, being the odd man out, am wrinting to you from home. I miss them.

Today was an ordeal — technically, I guess it was yesterday. We went in to see our pediatrician who recommended we go to the emegency room to seek another opinion from someone who may have seen this type of thing before. We went and were immediately admitted. What followed was scary and humiliating.

More truama questions. Hayes was then given a CT (cat scan). Good news — fabulous news — no fracture, so this is not brain related. However, since this was an unexplained head truama, Hayes was treated as if he might be abused. So much for innocent until proven guilty. It was humiliating. We spoke with a social worker, which wasn’t the bad part. I understand the importance of that. The bad part is that then Hayes had to get a FULL BODY xray. We, at first, thought there was some medical reason. It quickly became apparent that there was only one — to prove we had not abused Hayes, which one of the residents later cheerfully admitted to us.

The full body xray was not one xray, as we had assumed, but almost 20 of Hayes’ various parts. Hayes screamed, puked (the spinning head exorcist type puke) and I cried. It was awful. I have never felt less self worth in my life. Jen and I were pissed. No, that’s not quite right. We were fuming. Why did Hayes need to be subjected to all this excess harmful radiation in his fomative months? To prove we had not abused him. So instead of us abusing him, the hospital did a bit of abusement. Fucking ridiculous.

After that, we went upstairs and were admitted. The staff of three pediatricians came by and one looked familiar. It was the NICU resident that I had met when Hayes was first born. She remembered us, and how Hayes was so huge compared to the premature babies. They explained that what Hayes has is likely something that babies get when suction is used on them in a vaginal birth. It was also possible cause by trauma when this late in life. And by trauma, they explained, it could have been just a slight bonk on the head that wouldn’t have even bothered Hayes. You know, when your putting the kid in the car seat and accidently hit his head on the handle and you go “oh shit, sorry!” and baby goes “gah!” and continues smiling like nothing has happened? That has happened. Hardly abusive.

Anyway, I feel like Hayes and Jen are in good hand right now. I also still feel violated. But most of all, I am just happy that it looks like Hayes will be just fine. Happier than I can possibly express.

BTW, did I mention that they scheduled that MRI tomorrow afternoon?

About last night…

March 8, 2005

Yah, uhm, last night… Ok, here’s how it happened. I was holding the Hbomb, stroking his blond locks (an overstatement) and suddenly I came upon a raised spot on his head. A large, squishy raised spot on his head. In fact, it was as if a small waterbed had taken up residence on the top of his head. Right there where the back of the head starts to slope down to the flat back of the head, was a three inch wide horizontal waterbed. It freaked me out.

“This isn’t normal,” I told Jen. She agreed. “We need to call the doc.”

She agreed again, and called the doc. We got through and the person on the other end (are they medically trained? hard to tell) asked the same old questions. Is he sleeping? Does he eat? Did he have any head trauma? Do you have it out for him? Ok, I made that last one up.

She told us that she would have someone contact us. We waited. I turned on the Simpsons. Thank you SImpsons for wasting the half hour it took for someone to f’n call us back.

Same questions. Finally: “Well, you could go to the emergency room (THE EMERGENCY ROOM?) and wait for4 to 6 hours subjecting him to all sorts of ailments, or you could wait to see your pediatrician tomorrow.”

We choose the latter.

Our pediatrician doesn’t come in on Tuesdays until 2pm, so we waited. The escorts us the room and asks us about the bump on his head. It’s more than that, we explain. It’s fluid. She doesn’t check, kinda shrugs it off, weighs HBomb (12.4lb!) and leaves. The doc arrives goes over the Zantac first. We tell her it seems to be working. We’ve switched Hayes to the easy to digest tapioca based formula. He’s been sleeping a ton more. No longer cries when he poops. Etc.

“So what’s wrong with his head?” she asks

“There seems to be… uh… it seems like… kinda like…. well, you should just feel it.” I tell her, swinging Hayes into her reach. She washes her hands and touches.

“Oh!” she exclaims.

After the did he have head truama, is he sleeping, is he alert, does he eat discussion, she decides that the symptoms don’t add up. She consults the other pediatrician in the practice, the one that called me out in the hospital for leaving Hayes unattended on the bed. She feels around.

“Hmmm… Ok, first thing. We think about is how this happened. No head trauma, but you might not remember that. Is it blood or something else. Did you call Children’s?” she asks our pediatrician. Children’s is Children’s Hospital, perhaps the best children’s hospital in the world.

Great.

It is decided that we need to go to Children’s to get a sonogram. We get into the room and the tech takes a look. She is really quite and barely laughs at the joke I make about the sonogram gel in Hayes’ hair. It takes about 20 minutes. The joke wasn’t that funny. She tells us she needs to speak with the radiologist and leaves.

10 Minures later… ok more like 2 minutes but it felt longer, she reappears with the radiologist. He does the same thing. Mutters something about “it crossing the midpoint”or something, then remarks to the tech something far more criptic, announces he is done and asks us what we are doing next. We explain that our doc will call us when she receives word about the results.

“Oh, so you don’t have an appointment next? Hmmm… well let me call her then I can tell you what she said.”

Uhm, ok.

“You can stay in here if you want… it’s more private for when he comes back,” the tech says to us after the radiologist has left, then promptly leaves herself.

Fuck.

We spend what feels like 30 minutes waiting. He returns with the tech.

“Ok, talked to her and shared the results. She’s going to call you,” He says. Jen and I look at each other then I look back at him, hoping to telekinetically move to explain his findings. He does. They found some stuff. “Nothing to lose sleep over,” he tells us.

Our pediatrician calls us 40 minutes later. The radiologist told her there is definitely fluid up there. Duh. Also, good news, no blood on the brain. Though nothing else can be gleaned from the sonogram. They still don’t know what the fluid is, what caused it, who killed JR… any of that. The sonogram further showed that the top part of his brain may be a bit thin. This caused our pediatrician to call the neurologist. They recommended an MRI.

So, we’re getting an MRI. They are hard to schedule at Children’s so we need to wait for them to call us tomorrow to see where we fit in. In the meantime, our pediatrician has told us that her gut instinct is that this is an anomoly, and that it will turn out fine. I think that’s true, too. Jen, well… she’s hopeful.

Now we wait for the MRI.

More Pictures

January 31, 2005

Since Hayes is sleeping more, I am feeling more motivated to post some of the half million or so pictures I have taken since the H-Bomb was born. Man, it’s amazing how much more crazy I’m likely to go with photos when I don’t have to pay for developing! I’ve built a little gallery, beginning with Jen going in to get dilated, and ending with a picture I took yesterday. Hope you like!

A Hard Day’s… Milk

January 26, 2005

The breastfeeding thing is very frustrating for Jen, Hayes, and me (though I feel sorta bad about including me, our pediatrician said I feed him very well and am important, so that’s why I am). It’s not the latching, which is the case most of the time. It’s the milk, or I should say lack there of. Hayes needs a lot of sustanance, and Jen just isn’t providing as much as he wants.

It’s not her fault. The fates have conspired against us. Hayes was bottle fed in the blizzard short staffed NICU and since has wanted — no expected — that much food at feeding. And Jen’s milk hasn’t come in. It sucks, keep the pun. So we’re left dealing with a hungry Hayes unless we find another way to feed him. And we have.

This breastfeeding thing seems to be kinda a societal stigma. ‘You are breast feeding right?” Well, take this from a man who has been through quite a bit in the past 5 days. Sometimes it’s easier said then done. On NPR the other day there was a linquist talking about how different languages have words for experiences that other languages don’t. He said the Japanese have a word that is only used when describing learning English… something about rice… and in some Middle Eastern languages there is no word for “compromise.” Literally.

With that in mind, I would like to suggest a word to describe the intial difficulties of breastfeeding. I’m calling it “milksour.” As in, “Both Hayes and Mom are milksour.” I think if you were to talk with other moms having the same problem, they would agree that that sums it up well. Whether they will or not, right now I’m wishing things were a bit less milksour.

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