Ike-a-saurus update

I am home for a moment, visiting the other kiddos and eating some food. I just wanted to check in to let everyone know what is going on.

The tests came back from Infectious Disease and Ike does NOT have the flu. Even after three rapid tests confirmed both Influenza A and B, the true tests say nope. I don't really understand this, but the doctor tells us there is nothing to doubt now that the fancy test results are in. No flu.

There are other cultures out to see what virus he has, and a trach swab has tested positive for pneumonia. However, his lungs are fairly clear (as of now – knock on wood). He is being treated with antibiotics as if he has pneumonia, though. And it could be developing, we don't know.

It seems that the true problem is his airway. We knew about the laryngomalacia (floppy larynx) because of the stridor when he breathes. But our pediatrician was never convinced that it was just the LM causing the noise. Though even after being referred to two different ENTs, no one was willing to take a healthy baby into the OR to give him the bronchoscopy needed to see below the malacia to see if there was anything else obstructing his airway. At the time, this was fine by me. I didn't want him to go to the OR either, and if he was thriving we could live with the noise.

But the noise was getting worse and worse and then the runny nose hit, and congestion. He wouldn't eat and when we took him to the pediatrician Friday morning he suddenly turned very pale. His o2 was down into the 70s and our doctor called 911 to transport him to the children's hospital. I rode in the ambulance, forced to be up front with the driver, but I could see Ike in his car seat on the gurney in the back through a closed circuit TV. I could hear him, too. I watched the other EMT administer oxygen as we sped to the hospital. My husband was following behind us.

As a side note, I was very impressed that other drivers actually got the hell out of the way of the ambulance.

So we were at the ER for hours and hours while he was assessed. At that time, he was obviously sick, but OK. He wasn't interested in eating, but I could comfort him with a paci dipped in sugar water. They decided to give him an IV because he had been peeing orange crystals – not awesome – and a sign of dehydration. It was a toss up whether they were going to put him on the regular floor or the "intermediate floor" (with less kids per nurse and more monitors). They decided he was OK enough for the regular floor, so he was admitted and we moved upstairs.

We were there several hours and he was obviously getting worse. His o2 sat level had initially gone back up after they fit him with a canula, but then it started going down again. The mucus was so bad the nurses had to keep suctioning him with this huge vacuum thing. They started holding an oxygen mask along with the canula and even that wasn't helping. Various medicines were administered, nothing was helping. So they decided to move him to the intermediate floor (but only after an excruciatingly long time of bumbling med students trying to figure out what to do).

We rode to the intermediate floor with me on the hospital bed and Ike in my arms, with the respiratory tech holding his oxygen and monitors on the bed with us. 

We were only on the intermediate floor for minutes. I put him in the crib in the room and as soon as I put him down his sats dropped, his heart rate dropped and he turned gray. He was crying and wheezing and there were so many people around the bed. They couldn't get his o2 levels above 60, even when they were bagging him. So they pushed the bed out of the room towards ICU. We ran down the hall and they told me they were going to have to intubate. The last thing I saw was his blue/gray body, covered in wires and people's hands, with the bagging mask over his face. I could still hear him crying. That's when they made me go to the waiting room.

Thank goodness my friend Amy was with me. My husband had gone home earlier to be with the kids and I had told him everything was OK (because it was at the time) so he went to sleep. Even with the phones by him he slept through all my calls. Finally, Amy was brilliant enough to take my phone and call his sister, who drove to the house and banged on the front door, alerting the dog, who woke up my husband by barking.

So I was in the waiting room, completely freaking out. Keening is probably a good word. I was nuts. And Amy held me and tried to comfort me and I'm sure she is scarred for life now from having to see Isaac like that and then having to see me like that. I fucking flipped out. Flipped out. I haven't stopped shaking since that night.

Finally, a doctor came and told me that the tube was in. They had a very hard time with it. The correct size tube wouldn't fit and neither would the size smaller or the size smaller than that. It took a preemie-sized tube because his airway was so narrow. But they didn't know why it was narrow. Probably a congenital obstruction combined with swelling. It took them long enough to get the tube in that his heart stopped very briefly (less than a minute I was told) and they had to do chest compressions.

After they put in a central line, a foley, several other tubes in his nose and other things, I was allowed back to see him. By that time my husband was there.

Ike was – and still is – heavily sedated. They are paralyzing him to keep him from moving. His "critical airway" cannot be jostled at all because the tube is so tiny.

We are waiting for the infection(s) to get better now so that an ENT can come do a bronchoscopy and see why his airway is so narrow. It could be a congenital obstruction (webbing, a lesion) or it could be that his airway is malformed and needs to be completely reconstructed. We just don't know. We also don't know how the bronch will be done because the tube they use is bigger than the tube that fits in his throat – and both tubes have to be in place so that he can breathe during the procedure.

If they find an obstruction during the procedure they can possibly fix it. But we don't know if they'll be able to even do the procedure at this point. It's very confusing and scary.

So we are waiting. His o2 levels and heart rate plummet every so often while he's being suctioned or moved or sometimes for no discernible reason. We don't really know what's going on but the doctors and the nurses and the techs are doing everything they know how to do.

I feel like something inside of me has broken.

But being strong for Isaac is so important. When I talk to him he will open his eyes to look at me – even under sedation. Big tears fill his eyes. His shoulders twitch as he tries to move. Words cannot describe how it is to see your baby like that. People tell me to eat, to sleep, to pump. But how do I do anything? My milk supply is decimated right now. I have slept maybe four hours in the past two or three days. I try to come home for a few hours in the morning and evenings to see the wee one and the wee-er one and smile and be a happy mommy, but it is damn near impossible. The wee one asked if it was his fault because he goes to school with kids who have the flu. He said, "but I change my clothes when I come home!" And he does. I assure him over and over that this is not his fault. And now that we know it isn't the flu, that helps him understand, too. The wee-er one just wants Ike home. She doesn't understand why we keep coming home without him. I am not sure how a broken heart is able to break in new places everyday, but it can and it does.

We ask for prayers. Good thoughts. Vibes. Whatever energy you want to throw out into the ether. It is

A

Bad

Time

My husband continues to look for work, after being laid off on January 30th, but you can imagine how easy it is for him to concentrate right now.

Our community is reaching out to help and a website: www.ikeasaurus.com has been created to keep everyone updates on the things they are planning.

I don't even know what to say about this. It's just too much. So many people surrounding us with love and support… it feels undeserved, but we are very grateful for it. Very very grateful.

I am terrified for the future. Everyday something excruciating happens, and we haven't even gotten to the part where they attempt to figure out what's wrong with his airway.

I hesitate to post all of this. It seems so dire and personal. And, superstitiously, it seems like whenever I post something to the blog, something bad happens. But this blog is part of me. And with my community of mamas – and the community as a whole – reaching out to us, I wanted to write this post. I needed to get it all out. It's still not all out. But now you know the basics.

My baby boy. How did this happen?

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19 thoughts on “Ike-a-saurus update

  1. So many good thoughts for you & Ike coming your way. Stay strong Mama, Ike needs you! : ) Hoping that that sucky infection of whatever kind goes away fast so Ike can get back to normal. Hugs!

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  2. Nothing I can really say, but want you to know we are reading/watching/witnessing this battle. Thank you for the update. Know that at any given moment there are hundreds of people pulling for you, thinking of your struggles.

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  3. I know the world feels like it’s crashing in on you right now, and there’s nothing I can really say to make that better, but I will share this.
    Love is eternal. Love is the most powerful and awesome thing in the universe. You might feel broken with worry and fear, but underneath is love and it will keep you together.
    I know this is overwhelming and I feel for your pain.

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  4. I’m so sorry that your mommy heart has to watch little Ike go through this. But mommy hearts are the strongest force in the world. We’re all here, hurting with you and praying for you. Ike has already proved he’s a fighter. He’ll get through this, and you will, too. Stay strong momma, and we’ll stay strong for you.

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  5. I’m so sorry your momma heart has to watch Ike go through this. But momma hearts are the strongest force in the world and your strength will help Ike get better. We’re all here hurting with you and praying for you. Stay strong momma and we’ll stay strong for you.

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  6. My heart is in my throat, as I choke back my tears. I’ll be saying prayers for all of you, and send all the positive energy I have out into the universe. There is a huge force of love surrounding all of you, and we want to help pull you through to the other side.

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  7. oh, kari. i’m so sorry that you are all going through this. i’ve been following your blog and the story of ike for a while, but lost touch for a couple months due to changes in my family. i think of you often, and now i am thinking of and praying for ike all the time. my heart aches for all of you.

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  8. My baby boy was sick at birth for a long time. It is scary and awful. I will pray for your family to have strength, and Ike to have health. You can do this.

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  9. Tell that sweet little Ike for me that he won’t always be in the hospital sick. One of these days he’s going to be a great big boy running and playing with his brother and sister.

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  10. Kari,
    You and your husband are such great parents. You guys handle everything with such grace,as a parent you must be dying inside. Stay strong though, Ike is gonna do great. He is a fighter, we have seen that, but so are his parents. As I watched you two with him on Friday I was amazed at how truly blessed Isaac is to have such wonderful parents. I was worried sick about him and you guys and am so glad that he got the trach and can breathe. Hang in there. It won’t be long!

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  11. I happened on your blog quite by accident. I’m so glad I did. Having had 3 healthy Sons that I thanked God for daily & still do I have a precious Grand Daughter who spent the first months of her life NICU.I can only offer you my heart felt prayers & you can count on me for them,believe me.God has never let me down & I know he won’t this time either! Bless you & your family. Linda

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