Friday, July 31, 2009

Lung Biopsy Results are In!

We got lucky, and this was the BEST case scenario we could ask for. This is awesome. We know to expect that he'll be admitted a few times throughout the high cold/flu/respiratory illness months. I can deal with that. We also know he's going to have a low threshold for work that may require added pulmonary support, like running, learning to walk, roll over, etc. But, we can work on helping him work on all those things. Not so bad, right?

The name of the disorder he has is NEHI (neuroendocrine cell hyperplasia in infancy). This is REALLY rare, so it's not 100% surety that he'll outgrow, but most of the known cases of it have indeed outgrown it. So, the odds are very much in Little Guy's favor. That works for me. I consider myself very blessed to know there is a light at the end of this tunnel for him.

We still have to work on the obstructive sleep apnea, which he may also outgrow. He's have a sleep study in September, and we'll go from there. No matter how you slice and dice it, though, he doesn't have the inoperable brain tumor they thought he had, he doesn't have cystic fibrosis, this isn't going to kill him, and more than like he won't have to live with this for the rest of his life. So, yeah. We are pleased. We will embrace what we do have to work with and be grateful for what it is...and what it isn't.

Thursday, July 30, 2009

Lung Biopsy Results Tomorrow

Little Guy has a visit with his pulmonologist tomorrow morning first thing. I'm feeling a little bit antsy about it because we're hoping to know something from his lung biopsy. I wouldn't mind them saying he's going to be fine and should wake up cured in a week or so. I don't think that'll be the case tomorrow. So, instead I'm sort of hoping and praying for whatever it is to be something that's not too horribly painful.

He's done really great since he's been home. We find that he has a cough that ebbs and flows some, but seems to not be too bothered by it. I think I'm more bothered because I worry about him. He's also got a low threshold for ability to work and play. Early intervention is going to help with that little by little. I can deal with that plan, I think.

The Beast pulled the tubing for Little Guy's hearing aid this morning, so we'll get that fixed on our way home at the same time tomorrow. Not that it matters. Apparently my memo telling him that hearing aids are NOT chew toys didn't really have much impact on him. I can't imagine it would feel good putting a slobbery hearing aid in my ear, but Little Guy seems to like it. That's the only thing I can come up with to explain why he insists on chewing those silly things.

So, those are the updates. Whatever your faith, we appreciate all the prayers you've offered in our behalf. They've worked miracles. I'll be sure to update as soon as I know something tomorrow.

Sunday, July 26, 2009

He's Happy to be Home

Little Guy LOVES his jumperoo. (It actually belonged to the Beast, and they've all used it since then.) Ever since coming home from the hospital, this has been one happy bouncing baby boy. Note that he naps in his jumperoo during the day, but doesn't sleep so well in his bed at night. And also note that he is NOT wearing his hearing aids. I'm not complaining. I'm just sayin'...

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A Memo to Little Guy

Dear Little Guy:

It appears that your stay in the hospital during which you had undivided attention at all times, both day and night, has caused you to have a little bit of confusion about a few things. Because I am your most adoring mother and love you so deeply, I'm taking it upon myself to offer you some valuable information.

First, and probably most important, is that night time is for sleeping. Being nocturnal isn't really all it's cracked up to be. It's more for rodents, owls, and freaks that go to sleazy bars. Since you're none of those things, it should be understood that you are not meant to be nocturnal. When it's dark outside, you should be sleeping. When it's light outside, you should be awake (except for the two naps you take daily, which are not to be tamped with. At all.). Should you feel the need to be awake at night, please be mindful of the fact that you share a room with me and your Daddy. Your singing, while it is delightful, and your witty banter are much more appreciated and enjoyed during the daytime hours. Additionally, throwing your toys at your sleeping mother is less than cute. Well, okay, it's cute. But it's much cuter at any other time of day.

Second, let's talk about your nasal canula. It isn't really meant to be a toy. I realize that the cat loves to chase your tubing around and that's a bad choice. He'll be receiving a memo about that shortly. I promise. It's actually there to keep you from turning three shades of blue. Blue is only good if you're a smurf. You are not a smurf. Therefore, I'm politely requesting that you keep your canula in your nose rather than on it. Thank you.

Finally, we come to the issue of your hearing aids. I'm not sure if you've noticed, but you have a LOT of other toys. None of your other toys cost nearly the amount of your hearing aids, and they don't help you hear like your hearing aids do. Please respectfully refrain from using your hearing aids as chew toys and from flinging them to far off galaxies when we're out. Seriously, those things cost more than seven mortgage payments, kid! Plus, if you keep them in your ears, you can hear yourself during the singing and witty banter mentioned previously.

Thank you kindly for your consideration regarding these important issues. Your prompt resolution to these situations is greatly appreciated.

With Love,
Your Adoring Mom

Thursday, July 9, 2009

We Are Home!

Finally, Little Guy and I are back where we belong! Four full weeks in a hospital leaves a person sort of wondering what the "real world" is really like. I have to admit that coming home and trying to get back into the swing of things is strangely foreign to me. I almost don't know what to do. I came home to a remarkably clean house with happy, healthy children to greet me. Dinner was brought in last night, so I didn't have to even work to do all that. But, still...Something is just...I don't know. Different. Part of me doesn't want to really believe we're home because goodness only knows how long this will last for.

Little Guy is doing well with his oxygen at home, and seemed to be happy to sleep in his own bed right next to his mama. I'm not ashamed to say that I felt just the same way. There was something so refreshing about being all cuddled up safe and sound between Little Guy and the King. It's the best night's sleep I've had in ages.

I thought it would be fun to finally download and display some of the fun pictures we took in the hospital. Enjoy!

And thanks so much for the prayers. They literally worked miracles.!

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Tuesday, July 7, 2009

There is an End in Sight

The preliminary results of Little Guy's biopsy are coming in little by little. There are some tests that will actually take weeks to get, but what we do know so far is that we have ruled out the really bad stuff. We'll take that. Honestly, after the roller coaster of the mass on his brain and always turning blue with no reason and the fact that we do know for sure that whatever he has is VERY rare, just knowing that the "really bad stuff" is not what he has seems like a real gift. Who am I to look a gift horse in the mouth, right?

We also know this is going to be a long-term illness for him. He'll have to wear his oxygen for several years to come, if not permanently (the results of the biopsy will tell us more about long-term expectations). We still have some out-patient studies to do, and we know to plan on some hospitalizations during the winter. What it comes down to is that he'll more than likely have to be hospitalized every time he gets a cold or the flu because his lungs won't be able to handle any kind of extra work. At least we know what to expect, though, and I'm okay with that.

So, the next couple of days are going to be used to titrate his oxygen levels and make sure he's safe to go home. And then, if all goes well, we should be home by the weekend!!!! I think this calls for some sort of celebration or party or something, but maybe not at my house. Church friends have made it so clean and tidy that I just don't have the heart to invite dozens of people in to mess it up.

Anyway, there you go. Put on your party frocks and meet us someplace other than my house to have a very low-key party that won't work Little Guy up into having to work harder to breathe and jump (carefully) for joy with us that we get to bring our sweet boy home and once again resume some semblance of normalcy. (Was that a run-on sentence?)

Friday, July 3, 2009

We're Out of Surgery

Little Guy did great through the lung biopsy surgery. He hasn't had to go to ICU and is back on the pulmonology unit, but is in a lot of pain. He is being given lots of pain control medicine, but still just lays there moaning in his sleep. So sad. Poor Little Guy. He also isn't urinating, so the left side of his face is swelling. The doctors have ordered a catheter to drain the excess fluids from his bladder. He doesn't want to be touched, so I'm confident he'll be feeling the need to send a strongly worded letter to someone when he's being cathed. Hopefully, as the days go by, his pain level will subside and he'll be able to rest comfortably.

Thursday, July 2, 2009

Little Guy Wants Your Smiles

All of Little Guy's tests have come back negative so far. So, tomorrow morning he will have a lung biopsy. There are some risks to the procedure and we're a little nervous about it. But, we have an amazing team of doctors and Little Guy received a priesthood blessing tonight that was both comforting and reassuring. This is our last-ditch effort. If this test doesn't tell us something, we're back to square one. We're opting not to even think about that right now and are instead thinking positively and just planning on getting all the answers we need from this biopsy.

One thing Little Guy just can't get enough of is faces looking back at him. Lots and lots of faces. We're trying to collect and print all the happy smiling faces we can get and put them all over his room and crib. A friend of our's kindly made him his very own blog. It's at . I hope you'll stop by it and e-mail your smiling face to the e-mail address listed on the right-hand side. He'll be so delighted to see all your faces smiling back at him and cheering him on. With the right attitude, we're just sure he'll be home in no time.