Monday, April 2, 2012
2 Years Post-op
Max's first 18 months were difficult ones. It felt like one medical problem, one specialist, one hospitalization or surgery after another. Craniosynostosis was such an ugly word that took up so much of our time, energy and emotion.
But to look at Max now, you would never in a million years guess what he's been through.
I might be a bit biased, but isn't he adorable? We are so proud of him. He is such a smart, charming, funny little boy, who is meeting all his milestones and has grown out of all his initial feeding problems and other health struggles.
I am so grateful that the majority of the cranio ugliness is behind us. We are supposed to follow up yearly with our cranio facial surgeon, but for various reasons we find ourselves right now without health insurance (for some strange reason, it's really hard to find a company willing to insure a 3 year old who has had 4 surgeries and 4 hospitalizations,) so we'll wait on the follow up visit for now.
For the most part, we're pretty satisfied with the results of the surgeries. The top of his head is ridiculously lumpy and bumpy, but he has so much fabulous hair that no one would ever notice. There are still a few things that concern me- he seems to have some indentations above his eyebrows that are getting more pronounced, and there's some weird ridges on the edges of his forehead. But let's be realistic: I'm probably the only one who would notice them in a million years anyway.
I'd be lying if I said the journey we took with him wasn't the hardest thing we've ever done as parents. I'm also very grateful to say that craniosynostosis occupies very little of my time and energy these days. And that's just the way I like it, thank you very much.
Friday, April 1, 2011
Craniosynostosis Surgery- a year later
Before my son was born and diagnosed, I had never even heard of it. Once he was diagnosed, I had to ask the doctor to say it again and again, then finall had her write it down so I could come home and research it.
Now, nearly two and a half years after that diagnosis, not only have we had two surgeries and a whole host of complications to go with them, but I could probably bore you to tears spouting more information, facts and stories than you ever wanted to know. I could probably challenge most pediatricians in a game of "Cranio Jeopardy" and win. (And wouldn't that be a riveting game show?) I could tell you the best-known surgeons in the US, (and Great Britain for that matter), I could decribe in depth the difference between the endoscopic repair and the more traditional CVR, and I could give you all the secrets you would need to spend a week at a Children's hospital.
This week marked a year since Max's second big surgery. I can't say that I've been feeling nostalgic, but I've done more than a little looking back this week and thanking the powers that be that cranio isn't something we worry about on a day to day basis anymore.
In general, we are satisfied with the results of the second surgery. To an untrained eye, (in other words, to anyone except me and other head picking, cranio-obsessed moms,) he looks like any other little boy. His long crazy curls cover up the fact that the top of his head has more bumps and ridges than a moguls course. The poor boy will never be able to rock the shaved-head look. He still has some weird lumps on his forehead, some narrowness above his eyebrows, and every so often we'll see what has to be a screw poking out underneath his skin, but there's nothing that would make us consider another surgery for a second.
But for the most part, the medical chaos that followed us for the first eighteen months or so of Max's life seems to have subsided dramatically. He hasn't been to the doctor more than once in the past six months, which is quite a change from the first year of his life, where we were lucky if we went a week without one doctor appointment or another! He is a bright, happy, cheerful, busy, trouble-making, tantrum-throwing, house-destroying toddler, and thankfully, we wouldn't have it any other way.
To know Max is to love him. You can't help be captivated by his crazy hair, his infectious laugh and his hilarious take on life. (And yes, I realize that his hair is long enough to take over the world, and yes, I probably should get it cut. But I can't bring myself to do it. It's his third head of hair. It's never gotten this long without someone strapping him to an operating table and shaving it off, then handing it to me in a little plastic bag marked "biohazard." So we're probably gonna be keeping it long for a while yet. And in my defense, it doesn't always look this crazy!) You would never guess all he's been through in life just by looking at him.
A year ago, we were sitting in the Pediatric Intensive Care Unit at Primary Children's Hospital. Max's swelling was at its peak, and we were all praying that his sodium levels would get under control soon so we could be moved to a regular room. We were trying to find a pain medication that would do the job and desperately praying for comfort for him and for us.
Sunday, May 2, 2010
One Year, One Month
It's a good thing that when we were sitting in the hospital a year ago that I had no idea we would be doing it again eleven short months later.
Yesterday also marked a month and a day from surgery number two.
Max is doing beautifully. Looking at him, you would never know that he has been through such an ordeal, not just once but twice. His head is filled with the normal post-op lumps and bumps, but there is nothing overly concerning, which is saying something because a month post-op from his first surgery, I could still see the triangular shape to his forehead.
I can't describe how much I would love to put all of this behind us and never think of it again. We have our first real post-op appointment this week, and I'm hoping that's a significant step towards that.
Oh, and did I mention that yesterday was my birthday? We got a sitter, saw a movie, and ate crab legs. Good day.
Tuesday, April 13, 2010
Two weeks post-op and a lot of random pictures
Still not sleeping much, but I'm suspecting that might have as much to do with two impending molars as it does with post-op anxiety, fear, or other weirdness.
His hair is starting to make an appearance, albeit slowly, so at least he's not looking bald as a cue ball. I'm anxious for the stitches to start dissolving so that his scar is less noticeable. Or less inviting to toddlers, children, and well meaning but rude strangers to touch his head and say "what happened to his head?" It feels a little bit like pregnant woman syndrome where perfect strangers think nothing of coming up and touching your belly. I can't count the number of people who, over the past week, have thought it was perfectly acceptable to put their hands on Max's scar. Just for the record, its not okay. (And am I the only one that thinks it's strange that I even have to explain that? Seriously, people! Get a clue!)
Thursday, April 8, 2010
Recovery
Monday, April 5, 2010
There's no place like home (especially after a week in the hospital!)
Ahhh, what's that they say about good intentions?
The truth is, the time in the hospital was incredibly difficult, physically and emotionally, and there was very little time to do anything besides attend to Max's needs, and then collapse into sleep in any available quiet second. Now that we are finally, blessedly home, I'm going to try to piece things together.
We spent two nights, and the better part of a third day in the PICU. Thursday morning we were promised a transfer, but ended up staying until almost five o'clock while they made sure all his levels were stable. His sodium was still fluctuating, although trending upward, which made the Drs convinced that it wasn't actually SAIDH this time around. He did have low blood albumin levels, which bought him three iv bags full of albumin, and a chaser of lasix, all in the hopes of bringing the swelling down. Within a few hours, the puffiness in his body was markedly lower, although his eyes still looked like he'd been on the losing end of a prize fight.
We were transferred to the regular floor that night, and took up residence in the NeuroScience Trauma unit. Happily, all the rooms in the NTU are private, and we settled in nicely.
One of the biggest problems throughout the hospital stay was getting Max to take his medication. Because of extensive ear infections and whatever else, he has a huge aversion to taking medication by mouth. Actually, aversion is too mild a word. Despite all our efforts to give him anything, he would scream like we were trying to kill him and spit every little bit out. We tried explaining this to the staff, and they would pat us on the arm and tell us "Oh, we'll figure something out." Max showed them. While we did morphine via his IV for a few days, we really didn't want to be giving him that much medicine if he didn't need it. So the next challenge became getting him to take oral pain meds. They prescribed liquid lortab, and we tried everything to get him to take it. One nurse though that if we sweetened it with sugar water it would help. No. He got maybe a quarter of that dose. At 3 am Friday morning, one nurse thought if she added strawberry flavoring it would help. No again. In fact, it was a complete disaster. He spit everything out, and it ended up running down his neck and under the bandages covering his central line. Utter panic ensued. Because the central line goes directly into his jugular vein, everyone was panicked about the possibility of infection, and the central line had to be removed right then. The anesthesiologist had taped it seventeen different ways, and then stitched it in incredibly tight, so removing it was miserable. While it was nice to have him connected to one less set of tubes and wires, getting it taken out was one of the most painful things we had to go through in the hospital.
Being on the regular floor had its priveleges though. When Max was awake, all he wanted was to be up. We spent hours walking the floors of the hospital and taking him for rides in the wagon all around the unit. When we weren't wandering the halls, we were standing and swaying or rocking in the rocking chair. He started to get incredibly anxious if one of us wasn't holding him all the time, because he knew as soon as we put him down or someone else touched him that something annoying, uncomfortable or painful was going to happen.
There aren't words to describe how difficult it was to see him struggling like that and not be able to do much to make it better. It was scary to see Max so depressed. He wasn't talking, signing, or giving us any real glimpse of his personality. I can't imagine how scary it would be to be a baby and have all these painful things happening and not even be able to see what is happening or who is interacting with you! We kept praying for his eyes to open, even just a little bit. His last surgery was so different- his eyes were only swollen shut for about eighteen hours or so, and we hadn't seen his eyes since before the surgery!
Friday was by far our most difficult day in the hospital. Max was refusing everything by mouth: food, water, breastmilk, and especially medication. He got put back on IV fluids, which felt like a huge step back. We were trying to avoid morphine, but the rectal tylenol they were giving him just wasn't strong enough, and by Friday morning we were dealing with an absolutely hysterical baby. Nothing we could do could get him to stop screaming. he was obviously miserable. Finally, they decided to go ahead and push the morphine so that we could get his pain under control, and then the doctors and nurses went to work to try and get his pain managed better. They finally decided to discontinue the lortab and start trying oxycodone, a stronger medicine that required a much smaller dose. We decided to do everything we could to get his med in him on time so that he could finally start to feel better.
The new medicine made a world of difference. He slept most of the afternoon on Friday, (as did we!) and by Friday night, we were finally starting to see a touch of his personality. We got a few smiles and he responded to us more, although we could tell he was still uncomfortable. We had all but given up on the hope of going home on Saturday. We were told we weren't able to go home until his pain was managable and he wass eating and drinking everything he needed. We resigned ourselves to hanging out in the hospital until Easter Sunday, and kept out fingers crossed for him to start feeling better.
Friday night was the turnaround. They gave him an enema to get everything cleared out from the surgery, (and clear out he did, almost all over me!) and that made him visibly more comfortable. Then he proceeded to sleep nearly the whole night through. He woke up to take his meds and then went right back to sleep, and Saturday morning, he seemed like an entirely different baby. Although his eyes were still swollen shut, he was trying to play with me, he wouldn't let go of the iphone, (its quite funny to see a baby who can't see try to play his favorite games!) and most importantly, was begging to eat. He downed a string cheese like he was starving and then ate a plate of scrambled eggs without taking a breath. Our doctor came in and told us that she was ready to send us home if we were ready to go, and we jumped at the chance.
We gave him a bath to remove a week's worth of surgery goop, medicine, antibiotic ointment and whatever else from his hair, (that they were supposed to shave but didn't) filled what felt like a thousand prescriptions, gathered up our things and headed home. It only took Max a few minutes to realize that he was home, and he immediately wanted to get down and explore. Problem was, his eyes were still swollen shut. So he would toddle around for a few minutes, then bump into something and scream. Then we would pick him up to comfort him and he would scream because he wanted to be down. We were petrified of him falling and breaking open his brand-new head, sending us right back to NTU room 2022, so we spent the next few hours following him around to keep him from falling, and trying to convince him it was okay for him to go to sleep. The battle for sleep took about two hours, a dose of pain meds, and a few tears, but Saturday night's sleep was well earned.
Seeing his eyes open just the tiniest bit on Sunday morning brought us all a sigh of relief. Even though it was just the tiniest slit, Max was thrilled to be able to see what was going on around him, and was quickly back to his old antics. It took him about 30 minutes to find the box of baby wipes and start emptying it, and he probably would have spent hours playing on the iphone and the xbox if we would have let him. The only trauma yesterday came when we sat him up in the high chair and shaved what was left of his hair. The surgeons told us they were going to shave everything before the surgery while he was under anesthesia, but when they removed his turban Friday morning, they had shaved a strip about three inches wide, leaving him a tiny patch of hair in the front and a see of crazy curls in the back. As much as it killed me to lose all those baby curls, it will be easier to take care of and look a lot better. So Tom got out the clippers and we buzzed all his hair. He wasn't at all happy about it, but we can now see that his head is *perfectly* round, shaped just the way its supposed to be, and yes, he still has a nasty scar.
So now, Monday morning, things are blessedly back to a new normal. He's a little bit more clingy and scared than normal, (like I can't leave the room without a screaming fit,) and his eyes are barely open, but from the way he's acting, you would never suspect that he had been through such a major trauma just a few days before. Its going to take me much longer to recover. And the house and the mountain of laundry? Well, they may never recover.
Wednesday, July 29, 2009
Second (and third) opinions
Today we met with another craniofacial surgeon to get an opinion about how Max is progressing after surgery. Despite hearing that we needed a repeat surgery from a specialist in Texas, we were both hoping to hear something different today.
The surgeon we saw today was very knowledgeable and very thorough. He actually trained our first surgeon, and told us that he has done around 1500 cranio repairs. His opinion was that Max's head wasn't corrected enough. He couldn't tell us for sure if his bones were shifting post-op, or if the swelling was just subsiding enough to show us the true shape of his forehead, but it was obvious to him that the results of the surgery weren't what they were supposed to be. In fact, he told us that when he first walked into the room and looked at Max, it looked as if Max had never had any surgery at all.
The frustrating thing about the visit with this surgeon is that he wouldn't recommend for or against surgery. He told us that it wouldn't get better from this point, and could possibly get worse. But he also told us that Max is at risk of developmental disabilities just by virtue of having metopic synostosis in the first place, and that doing a secondary correction doesn't decrease his likelihood of delays. (Fortunately as of now, Max is meeting all his milestones and progressing great!) He said that Max is not, as of now, in danger from increased intercranial pressure, and that he could help Max's eyes space out more with a second surgery. But he also told us that a second surgery is significantly more complicated, due to scar tissue, increased risk of bleeding and the fact that he would be undoing something another surgeon already did. Because his recovery was complicated previously by low sodium levels, there is a greater possibility we would be facing that again as well. So we have to weigh the risks of surgery against what we think the benefits would be.
I don't know how we are supposed to make a decision like this. How can I put my baby boy through another long, painful and risky procedure. But then again, I keep picturing how I would feel if Max came to me when he was 15 or 16 and told me he wished we would have fixed this when we had the chance. I worry about doing all this for "cosmetic" reasons. But the women I have talked to whose kids have all been through this keep reminding me that this surgery isn't cosmetic, which would take something normal and make it better. It's corrective, meaning it's taking something incorrect, or defective, and making it normal.
We left the surgeon's office planning to make a return trip in two-three months so that we could evaluate with him the direction Max's head shape is taking, and make a more firm decision about surgery then. When we got home, I found this email waiting in my inbox:
Stacy,
I agree with you. I think the temporal area of the forehead is settling far more than I would have expected. We have two options. First, we could wait to see if his head shape improves with time. I expect that if we take that approach, we would see some improvement, but probably not normalization. Second, we could return to surgery and reposition the brow with some bone grafting to help it remain secure. The bone graft could be taken from surrounding cranial bone so we would not have to take bone from another part of his body. As difficult as it is to say, I believe we would be better off going back to surgery. I am sorry about that. But all things considered, it is probably best to do that now while he is still young enough to not remember. I would love to talk this over with you by phone or in person. My cell phone number is xxx-xxx-xxxx.
So that settles it. One cranio-facial specialist from Texas say surgery, our original surgeon says surgery, and another surgeon says surgery is an option we should consider. It looks like we're headed for another surgery.
The question is now, how do we know who is a good surgeon? I know for certain that we won't go back with our original surgeon. In fact, we're contemplating a malpractice suit at this point. How do I trust that the surgeon we met with today has the experience to tackle what he defined as a difficult and rare procedure? There is another craniofacial surgeon here that we'll meet with just to cover all our bases, but how can I just take someones word for it when it involves my son's life? Naturally, we want the best for him, and if that involves flying to Texas to get the best possible care, we'll do it and enjoy a giant steak while we're there. But even then, how am I supposed to make this decision for him? Who decided I was smart and responsible enough to do this? I don't think I signed up for this...
Saturday, July 11, 2009
The Cranio-coaster
Wrong.
Turns out that my worries post-op are just as pronounced as worries pre-op. Turns out that I obsess about Max's head at least twenty-five times a day. Turns out that there hasn't been a day when I haven't worried about him having another surgery.
And it turns out that once again, things never go quite as I expect them to.
Ever since Max's swelling decreased enough for me to see the finished product, I haven't been thrilled with the results of the surgery. I was prepared for this- I had read stories of lots of moms who freaked out over every little bump and I swore I wasn't going to be one of those moms. But I started taking weekly pictures, some of which I've posted here. About four weeks post-op, I noticed that his ridge between his eyes had returned. In the eight week post-op pictures, I thought that his head still looked a little triangular, and spent about an hour comparing pre-op and post-op pictures and scrutinizing them for differences.
In the past two weeks, Max's head shape has changed even more, to the point where it is looking almost as it did before surgery. Although the ridge down the middle of the forehead is less pronounced, its still there. His head is tending more and more towards that triangular shape every day. And he once again has significant narrowing above his eyebrows- we refer to that as pinching. Finally, I couldn't handle worrying about it anymore, and emailed some pictures to his surgeon. Wanting to cover my bases, I also emailed some pictures to a renowned cranio-facial surgeon, Dr Jeffrey Fearon, in Dallas TX. Quite a few women on the Cranio board have been patients of his, and he is more than willing to give opinions over email. (Yeah, I know. I sent pictures off to an "Internet doc." But he's THE expert on craniosynostosis surgery. Rather than being a plastic surgeon who does boob jobs and tummy tucks, and an occasional cranio surgery on the side, Dr Fearon does exclusively children's cranio work. People travel from all over the world to work with him. I've seen him not recommend surgery, I've seen him tell parents to watch and wait, and I've seen him recommend surgery. So I felt pretty comfortable asking for his opinion.) Less than 48 hours later, I got this reply:
Thanks for your e-mail. I looked at the pictures that you sent me of Max, and I do have to agree with you that he doesn't really look all that different, aside from the scar across the top of his head. I agree with half of the advice you have gotten, which is to wait. As for the watch part, I do not expect it to get better. We recently published a study that showed that after surgery, children with single sutural synostosis (like metopic) do not grow normally after surgery, with a tendency to grow back slightly toward the way
they were before surgery, over the course of many years. We recommended
slightly over-correcting at the time of surgery to help avoid the need for a
second operation. It is my impression that Max did not get an adequate
correction, and I would not expect it to get better. I am sorry to say
that based on what I can see in the pictures that you sent, I would recommend repeating the operation, but I would suggest waiting at least 9 months from the last operation to let him heal in completely. I would be happy to either take care of your son, or just offer advice (by e-mail,phone consultation, or office visit), whatevr you prefer. Although you didn't tell me who did the initial surgery, I would recommend considering going to a different surgeon for his next procedure.
I was stunned. I felt like I had been sucker-punched to the gut. Although for weeks, my mother instinct had been telling me something wasn't right, I kept expecting that I would be told "Its normal, and you have nothing to worry about. And here I was being told the exact opposite.
We resolved not to do anything until we heard back from our surgeon. He told me exactly what I thought he would- "Its normal, things are progressing the way they should." The problem is, I know they're not. I've been following the pictures of other boys who are Max's age and had surgery about the same time, and the differences are dramatic. Max's head is triangular again! So I pushed the issue, explained to him that things had changed significantly, even in the past two weeks, and he asked for another round of photos. Problem is, he's going out of town for a week, so won't even look at the photos until then. Sigh.
So yesterday, I say Max down for another round of pictures.
I knew that things weren't right with Max, but when I saw these pictures, I had a good long cry. Because I knew that if I were looking at these pictures for the first time, I would think that kid had metopic synostosis and was going to require surgery. And then I realized that no matter what my surgeon says, we are likely going to have to repeat this entire process.
A few hours later, I got an email back from my surgeon's nurse saying she could see exactly what I was talking about and she would show these to the Doctor right away. I hate the waiting part.
So I sent these pictures off to Dr Fearon in Texas, and set up a consultation for a second (or is it third?) opinion with another cranio-facial surgeon at Primary's. We've actually kicked around the idea of traveling to Dallas to make sure the surgery gets done right the second time...
So it turns out my friends at CranioKids were right. It is a roller coaster. One I thought I would be exiting a long time ago, but it turns out the roller coaster is just gearing up for another go-round.
Sunday, June 28, 2009
Thursday, June 11, 2009
103.5
I'm not a panicky freak out mom when it comes to my kids' illnesses. More often than not, I let a fever run its course, and its typically over and done in a day or two. I'm not a germaphobe, and I'm definitely not a neat freak. However, that's all changed when it comes to Max and his crazy long health history. When I saw his temperature it was all I could do to not rush him to the pediatrician right then.
The good news is, he's still acting relatively normal. The last time he spiked a fever and we were readmitted to the hospital, he was crying inconsolably, and nothing would make him happy. Today he just been a little whiny, a little clingy (this translates roughly into him screaming bloody murder every time I leave the room!) and very sleepy. So as of right now, I'm repeating the mantra "Its just a virus" over and over again, and hoping against hope that we can weather this one without yet another trip to the hospital.
And for crying out loud, can't my poor little boy catch a break?
Tuesday, June 2, 2009
Having a healthy boy.... priceless
291 minutes in the OR= $4949.91 or approximately $17.01 per minute.
Daily Charge for a room in the PICU= $1185.10 (Should have gotten a room at the Grand America Hotel instead. Cheaper, better beds, better food! And just so you know, this does not include nursing services or anything else. It just includes ths space we took up in the PICU and the air we breathed.)
1 tsp dose of Lortab= $6.18 (1 Bottle of Lortab is a $4.00 generic prescription at Smiths!)
Plates and screws put in Max's skull to remodel it and help keep his new shape: $15007.06
1 Dose of pediatric Versed to prep him for a spinal tap: $429.63 (billed at a half-hour of concious sedation.)
Total Bill from the Neurosurgeon= $6137.68 (Now really, I'm not knocking the guy. I know he's very smart and very skilled. But he was only with my son for an hour!)
Total Bill From the Hospital so far= $47,382.72. We have yet to see a bill from our main surgeon, the anesthesiologists, or the radiologists. I'm betting, by the time all is said and done, we will top out around $75,000.
Really, its not as bad as it seems. The hospital bills the insurance company, and the insurance company tells the hospital there's no way they're paying $6.18 for every dose of lortab, so the bill is settled for much less than the itemized statements that I have. Plus, we have a $3,000 out of pocket maximum before the insurance company pays out at 100%. But still, its a huge bill! Tom and I can't wait for the day when Max is 16 or 17 and wants to do something dangerous like skydiving or stupid like getting a tattoo, and tells us, "It's my body, and I'll do what I want with it!" Because, um no. Between the outrageous amount of money that we paid for fertility treatments to get and stay pregnant, and the amount of medical bills we're paying now, we own him. For a long, long time!
But speaking of surgery, yesterday we reached the one-month post op mark! Woo-hoo! I am obsessively taking pictures of his head, so here's the latest, meant to show one month post surgery.
Saturday, May 16, 2009
Two Weeks
One week pre-surgery
Day of surgery.
Wednesday, May 13, 2009
The aftermath
Paraflu is the nasty little virus that causes croup, and it can also cause RSV. We caught it on the early side of things, just as it was causing a rip-roaring fever. It wouldn't have been such a big deal had we not been 10 days post op. Apparently Max is just excercising his family gift for the dramatic. He can't just get a little flu bug. Oh no. It has to be a big mighty flu bug ten days after a huge skull operation that freaks everyone out and results in another nights' stay in the hospital. I know that you have two crazy sisters buddy, but you really, really, don't have to try and out-do them, I promise!
Max has been through a lot in the past two weeks. I have been in tears many times during the course of this because he was so scared, or in so much pain, and I couldn't swoop in and rescue him. And I'm not a wimp, but I had to leave the room when they did the spinal tap on Monday, because I couldn't handle the idea of seeing him go through that and not being able to do anything about it. But the recurring message I heard throughout both hospital stays from the doctors and nurses was "Its such a good thing you're doing this now. He's a baby. He won't ever remember this." and "This is so much harder on the moms than it is on the babies." To that, I call a resounding "bull^%&*!" (Edited for your reading pleasure, and to uphold the illusion that I don't have a potty mouth.)
These past two weeks have changed Max. He's always been such a happy baby; social and loving. He's the kind of baby that works really hard to get people's attention, and when they notice him, he rewards them with a high voltage grin. I was holding him once in the grocery store line, and he got visibly upset when the person behind us wasn't paying attention to him. Well, Max still smiles at people, but he now has a viscious case of stranger anxiety. In his experience these past two weeks, anyone he doesn't know who comes near him is going to make his life hard. At best, they're going to use a cold stethescope to listen to his heart; at worst, they're going to hold him down and repeatedly jab him until they can get an IV in him. By the time we left the hospital yesterday, he would look away if anyone unfamiliar looked at him.
And today really convinced me that what has happened to him has made an impact. He woke really early today, and was ready to go back to sleep by 9am. Problem was, he had no intention of sleeping anywhere outside my arms. And anytime I would put him down after rocking, swaying, bouncing, or nursing him to sleep, he would instantly wake up with a look of panic on his face and start screaming. It was a difficult morning because I was feeling the pressure of a huge pile of laundry, a cluttered house and some very pressing errands to run. (Our car registration is two months overdue and we've been cited twice in the same day for it, and my driver's liscense is expired. I'm trying to avoid getting pulled over and having to explain both of those. I don't think that even the "My son was in the hospital" excuse would get me out of that court date.) Not to mention that fact that my hair hadn't been washed since Saturday morning, (an unscheduled hospital stay will do that to me,) and that I was looking and smeeling something like the creature from the black lagoon. All I wanted was for my baby to take a nap so that I could take a shower and catch up on a few things.
Instead, I spent all morning rocking, swaying, bouncing, nursing, singing, trying to put him down when he closed his eyes, and then seeing him wake up in panic. I could tell he was anxious, scared, and still feeling crappy. I was tired, emotionally drained, and feeling crappy. It wasn't a great mix.
The classic motherhood moment came at about 12:10, when I was sitting in the rocking chair with Max who had exhausted himself into a sleep, with tears running down both our faces. Sweet Ashlynn came in the living room and said "Mom, I'll make my own lunch today, ok?" That was perfect. And when she came in and told me that she made herself a peanut butter sandwich with no jelly, I was just grateful I didn't have to get out of my chair.
So tomorrow, I'm going to remind myself that my poor six month old baby has been through a lot these past two weeks. And if he wants to spend the whole morning rocking in the rocking chair and nursing, I'm going to do it. The least I can do is help his world feel a little more organized and secure. And besides, I washed my hair today, and a day or two of peanut butter sandwiches never killed anyone.
Thursday, May 7, 2009
Home Sweet Home
They decided to discharge us yesterday afternoon. His sodium levels were low, but stable, and the doctor in charge said that his kidneys were kicking in, and that his levels would normalize, but there was no reason for us to sit around the hospital until it did.
So after six days in the hospital, we packed up and left yesterday afternoon. It felt so good to be outside and to take my little guy home again! There is something to be said for a big long comfy couch, a fridge full of your own food, and sleeping in your own bed. I was worried that Max's sleep schedule was going to be completely upside down, but we had a great night's sleep last night, and he's been sleeping this afternoon for over four hours. I've had a couple of naps too, and its amazing to feel like a real person again.