Friday, September 4, 2009

Trouble, part 2

Also titled "How we managed to visit three separate hospitals and the inside of an ambulance in one day" or "Another example of how my baby boy is going to be the death of me before he's one year old."

So yesterday, we met with yet another surgeon at the University Hospital.  Somewhere in the back of my mind, I was hoping against hope that this surgeon would be the one to tell us that every one else is blowing things out of proportion, that his head shape is fine and we need to find something else to worry about.  Instead, he tells us the same thing all the other surgeons have said: the first surgery has failed and Max will require another complete skull revision.  His recommendation though is completely different that the other two surgeons.  He recommends going into surgery as soon as possible.  His thoughts are that the bone hardens as he ages, and the longer we wait the more scar tissue and adhesions we may have to deal with.  The other Doctors have said we need to wait 9-12 months after the first sugery before doing another one so as to let Max heal completely and decrease the risk of uncontrolled bleeding. 

I left the office confused and frustrated.  My husband is in Ireland on business this week, so my normal practice of calling him and hashing through all the details was shot.  If it were up to us, we'd rather have the surgery this calendar year, so that our insurance would pick up the whole gigantic tab.  But we're also not willing to complicate our baby's health for the sake of a few bills. But now, how are we supposed to know what's right when two experts have told us completly different things? And how are we supposed to choose the right doctor to operate on our baby?  Its not like we can ask for before and after pictures, or take him back to our first surgeon and tell him to do it right. I was ready to cry at the thought of another hospital stay, another round of endless nights in the PICU with a baby who doesn't understand why his eyes are swollen shut.  

So being as my older girls are in school all day long, and I was in Salt Lake, I had planned an entire day of errnads to run.  I shoved the surgery issues into the back of my mind so I didn't have to think about it any more, and headed to the other end of town.   When I passed by a friend's house, I decided on a whim to stop by.  Max was hungry, so we settled in on her couch for a visit while he was nursing and when he finished, I set him down on the floor to chase their cat.  A minute later, he sat up with a big grin on his face and something blue sticking out of his mouth.

I operated on instinct and did what every mom would do: I took my finger and swept his mouth, popping out a piece of blue plastic.  I didn't think anything of it until he started coughing.  And coughing.  I turned him over on my lap and started thumping his back.  He started gasping and continued coughing.  I could feel his body trying to vomit, but nothing came of it.  He was still breathing, but not sounding great.  He started vomiting again, and it went all over me and all over the carpet, but there was nothing in it.  I sat him up and he seemed ok, so both my friend and I breathed a sigh of relief.  Until he started screaming.  I groaned inwardly, knowing that we were headed to the hospital.

His screaming intensified the whole way there, and I went from thinking I was being a hyperactive worried mother to knowing that something was really wrong.  Once we got to the hospital, I discovered the only benefit to having a coking baby: you don't have to wait in the ER waiting room.  In a weird coincidence, the first ER doctor that we saw had a baby of his own who had craniosynostosis, who had been operated on by the same surgeon we had seen that morning.  Max was shrieking in pain, and I was getting panicked.  I knew that because of his history of aspiration, he was at high risk of aspirating whatever it was into his lungs, and his incredible screaming (they had to come and close the door to his examining room because he was disturbing everyone,) had everyone worried that something was seriously wrong.  They ordered some xrays where they didn't see anything.

At this point, I had to call and cancel my lessons for the afternoon, (this is the second time I've had to cancel lessons at the last minute because I was in the ER with the baby) and figure out what to do with my older kids who were getting out of school in an hour.  I called my husband in Ireland to tell him I was sitting in the ER with the baby.  The poor guy had been awake for nearly 36 hours with only 1-2 hours of crappy sleep on the plane, and had just falled asleep to be woken with the news that his son was once again in the hospital and he was across a very large ocean.   I talked with him for just a minute before I had to hang up because Max was vomiting all over me, himself, and all over the floor.

Just then, a nurse walked in to help clean us up and tell us that we were going to be provided with do-not-pass-go, do-not-drive-your-own-vehicle trip to Primary Children's hospital.    The nurse told us that Max would likely need a bronchoscopy, an endoscopy, or both, and they weren't equipped to do it there.  I almost started to cry right then and there.  The thought of having an emergency surgery on my baby when my husband was an entire planet away nearly sent me into panic mode.  And we were heading to our third hospital of the day, which just happens to be right next to the hospital we had left that morning.  They called the ambulance for transport and I kept trying to calm down my hysterical baby.  One interesting fact about hospital transports: if possible, you bring your own carseat and they strap it onto the stretcher.  It was rather eeirie riding in the ambulance- the last time I rode in an ambulance was after delivering Ashlynn on the side of the freeway. 

We got to Primarys and had to start all over.  I had to tell the story to every nurse, intern, resident, physicians assistant, and doctor who walked into the room.  We paced the floors and tried to get internet access or texts through the vortex of cell service that is Primary Children's hospital.  No one ever seems to be in a hurry at that hospital, which I imagine is a good thing, because I'm sure they would hurry if they thought it was emergent enough.  They finally decided on more xrays.  Poor Max at this point hadn't eaten anything or even nursed in about six hours, and was exhausted from the screaming and the pain he was in.  They were insisting I couldn't feed him because of the possiblity that we might have to head to surgery. The problem is, you can't really explain that to your baby who just wants to nurse.  I hadn't eaten anything since breakfast, was leaking breastmilk everywhere, and felt like I was reeking of vomit.

The xrays didn't show anything in his trachea or his lungs, so I was finally cleared to feed him.  He gratefully and greedily nursed.  We were told to watch for more choking or vomiting, but he kept nursing like his life was depending on it.  Once they knew he was going to keep it down, they decided to discharge us.  My dad had to come and get us because I had left my car at hospital #2.  I was so grateful to load up in the car and drive away.  Max was completly exhausted, and slept from the time we put him in his carseat all the way until I put him in his crib in Heber.

The whole time we were at the hospital(s) and in the ambulance, I felt very strong.  I even joked about it, saying that nothing could compare to what we had already been through.  Which is true, but on the way back up the canyon, I completly lost it, and sobbed almost all the way home.  I could have lost my baby.  He could have choked and not been able to breathe.  We were at three hospitals. We were in an ambulance!   All those things coupled with the definite knowlege that we were headed to another surgery left me feeling beaten, sad, exhausted, and incredibly grateful that we had been so blessed. 

A decent night's sleep last night improved both of our outlooks dramatically.  My husband will, if all goes well, (and really, haven't we had enough trauma for a week?) be home tomorrow night, and we can deal with the questions about surgery then.  And Max is acting like his old self again.  It might take me more than a couple of days to get past the PTSD from being back in that hospital again, though.  And after sweeping a magnet, several pieces of cat food, and some rocks from Max's mouth today, I'm seriously contemplating buying a baby-sized plastic bubble for Max to live in until he gets past the "put everything in my mouth" stage.


  1. It is so hard in that stage, especially when you have older kids that leave things on the floor. I always felt like Sariah must have had some kind of guardian angel, because she surely should have choked. She is still extremely oral. She actually did swallow something once, and while it was not an emergency situation, we did have to take her to the doctor for x-rays because she kept making this weird sound when she breathed.

    I'm glad Max is OK, sorry you had such a awful day, and hope things get better from here! You've had quite the ride this year!

  2. WOW!!! What a day you had. No mom or baby should ever have to go through that. That is just so scary. WOW!!!

    So I know how you feel about who to trust and who to go through with surgeons but I truely believe Siddiqi is a great surgeon and he has not only had Nathan as his patient but my Brycelynn as well. He placed Brycelynn in a helmet when she was just a baby and that is how I put my trust in him for Nathan's ear. Brycelynn's head was forming the wrong shape and luckly she only needed to wear the helmet. Anyways just pray about it and hopefully you will know what to do. Sorry I wish there was more I could tell you but you could always ask the doctors if there are other parents that have been through this same situation and you could always call them and ask them what they did and what they recommend. Good Luck to you guys! Megan

  3. So sorry to hear that Max is needing surgery again! My little Holly is having surgery this week on the 11th! Sounds like you had a very trying day! I wish knew what to say about the surgery, the only thing I know to say is pray about it and trust that Heavenly Father will let you know what's the right thing to do!! Your family is in my prayers!

  4. I'm so sorry you've had to go through all this! I wish I could come on over and give you a big -everything is going to be all right- hug! Just don't forget to pray, read your scriptures and listen to the spirit. Everything will work out in the end and your whole family will be blessed because of it.

  5. My land, Stacy. So, uh, when do you want to do lunch? :)

  6. Wow! What a tramatic story and day for both of you. Is that child ever going to make it to his first birthday??

    I'm so glad everything turned out okay. Drama seems to follow you guys wherever you go.


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