Monday, April 5, 2010

There's no place like home (especially after a week in the hospital!)

Before we left for the hospital, I was determined that I would document everything that happened, as it happened, not only so that we could have a record of it for ourselves, but also so that it would be of help to the growing number of moms with cranio babies that I have been in contact with.

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.
We spent so much time standing, swaying, and rocking. 

And sleeping.  But it never felt like enough.

The turban is off! 

Taking a wagon ride.

This isn't a great picture, but it shows how flat and broad his forehead is now.  We're anxious to see how it looks once the swelling is gone.

So tired after the Friday craziness.

Home!  So glad to play with familiar toys!  (And you can see how bad his hair really is!)

After the haircut, playing with the ever-present iphone.

Loving with Grandpa.

Just chilling. You can see his eye open a tiny crack- the other is still pretty closed.

I tried to get a birds eye pick of his head while he was in his high chair, but instead just got this sweet face!


  1. Oh, sweet Max. I'm so sorry everything didn't go as well. I guess this is why they usually want them younger. Although, you tried that and we know how that went.
    Anyway I'm so glad he is home! I can tell a big difference on his head shape. It will be interesting to see him with his eyes fully open. Good luck!

  2. Wow, he's looking good! And I'm glad you're home. I'm loving the xbox picture - how funny! Hang in there sweetie! I wish you lived closer so I could come help clean your house!

  3. I am so glad he's doing better! The swelling has started to go down and I am sure both you and him are happy about that! Try to relax now that everything is behind you.... His forehead looks fantastic :)

  4. I think his head looks great! You made a great decision!!!

  5. Oh my goodness Stacy! What an ordeal - again! I'm so sorry you guys had to do it again, but I'm glad he's home and seems to be doing good. It really is amazing how resilient kids are.

  6. Oh my, oh my. Those pictures were so sad. What a brave little man.
    Sorry it was So hard the last couple of days. I'm glad they were able to figure it all out and that you are now home safe and sound.
    I had to giggle just a little over your comment about worrying about him breaking his new head.
    I remember that feeling when Alayna fell down the stairs only a couple weeks after her surgery! And Luke STILL worries about that!

  7. So glad he's home! What a horrible week, but now hopefully things will look up.

  8. I am so glad you made it through. That is so tough. I remember being in the hospital with my little boy. My prayers are with you.

  9. Stacy, Max is such a beautiful boy. The shot of his surgery stitches surprised me. I had no idea of the extent of his surgery! His baby curls will grow back in time, just you wait.

    My prayers for Max to recover and get back to his old self again, Iphone and all. :) Much love to you & your family.


  10. Hi, Stacy. I am here via Terresa at the Chocolate Chip Waffle and was gripped and alternately horrified by the ordeal and inspired by the loving determination you show in dealing with all of this. I found the description of Max opening his eyes just a slit especially moving — on Easter Sunday of all mornings, a time to celebrate hope.

    I wish you, Max and the family all the best.

  11. Hello, Stacy. I also came over via Terresa at the Chocolate Chip Waffle. What a beautiful family you have! Max is gorgeous. I am so sorry he is going through all this pain, and I will keep you and Max (and your entire family) in my prayers. I agree with Lorenzo...your story is moving, and it is full of love. Best wishes. -Julie

  12. Max is beautiful! You are both amazing parents. Thanks for sharing your story and journey with us.

  13. I just found your blog through The Chocolate Chip Waffle and hope you don't mind me commenting. Your baby Max sure is a trooper. I'm glad things are looking up for him and your family.

    I had surgery for craniosynostosis as well, when I was two months old. After the surgery my mom would always keep little hats on my head so people wouldn't stare. Thanks for this post. He will be in my prayers.

    Natasha from Today's Gift:


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