Tuesday, June 30, 2009

No New Answers, but So Many Blessings

This morning, I found myself in a puddle of tears sobbing on the phone to my dear friend, Anne Marie. After almost three long weeks, we are still no closer to finding answers we need or going home. This baby has been poked and prodded and tested and tortured and given medications "just to try", and so much more. We've had to move rooms to accomodate other children with contagious diseases, have had part of our house flood, have been apart as a family for weeks now, and...well, I know there's more. I just can't think of it right now.

So, there I was just sobbing and just wanting to beg Anne Marie to make it all go away (as if she could just wave a magic wand and make that happen, right?). I haven't slept in a looooooong time, and I think my thinking might be getting a little foggy at this point. (Thank goodness for happy pills!) I'm frustrated and maybe just a little bit frightened. I miss my other children horribly and The King tremendously. He is my best friend and the shoulder I cry on in times of trial. And yet, we're so far apart. And I hate it.

Anne Marie promised me that, through Heavenly Father, amazing things would come of horrible trials. I told her she'd dang well better be right or the Lord would be getting a strongly worded letter from me. She's not typically wrong, so the odds were good that positive things would come to pass.Let me just tell you about the incredible blessings that have come because of Little Guy's hospitalization. I can't begin to name them all because I'm not sure I've even recognized all of them. Honestly, I'm not sure that I ever will. Our church family has rallied in ways I can't begin to describe. Women have taken all of our laundry home to wash, dry, fold, and return it. My kitchen has been deep cleaned and reorganized. My children's rooms have been top to bottom cleaned. The flooded parts of my home have been cleaned and repaired. Closets have been organized. My master bathroom has been completely made over. Women have remembered little things I've said in the past and used those memories to make my home into something I can love and enjoy. My children have been cared for lovingly by people who have really no time to do it, but love our family so much that they'd give of themselves for us. Food has been provided. Love and support has been endless. I don't know of all the people who have been working tirelessly on behalf of my family, but I know they're there. And I know they're tired. And I'm grateful. Words won't ever begin to express my gratitude.

Today I got a visit from one of the girls I taught when she was a youth and young adult. She lives nearby and just knew I needed a visit. Brooke (that's her name) brought me a gossip magazine and chocolate. Nothing could have been more perfect. Nothing.

And then there's the MOFia. Some of you may know that I'm a proud member of an online message board for LDS moms. It's a private board full of women who all know at least one other person in real life (in other words there are no dirty old men). We are a tight knit group of about 130 women who are always there for each other. I've never met anything like it. It's like the perfect model of an LDS Relief Society.Taffi is a member of the MOFia. She came just a for a visit just days before Little Guy was readmitted to the hospital. She has extended her trip four times since she got here and given of her time and resources. She has stayed up through the night on nights that I could just not stay awake a minute longer. She has endured hosptial food that requires immodium and pepto to digest. (Not even kidding, people! Don't eat the hospital food). And she has done it freely and without any expectations. She's leaving Friday, and I was preparing to take the reigns here at the hospital on my own.

When Taffi came back from visiting with Angela, she informed me that another MOFia member, Lisa, would be arriving Friday evening for another week or so to help out. Her husband heard of the situation and they wanted to help. I can't begin to repay her or even promise her a fun time. And she knows about the food here, too. (Maybe she likes living on the edge?) She just chose to give of herself for no other reason than she could. And there is such a need. I can't even begin to explain my level of gratitude.So, here I sit at the end of a day that started with tears and heartache and fear. I'm looking at the bigger picture and realizing how blessed we are. While our baby is no closer to finding answers to explain his breathing troubles and our finances are no longer what we'd planned on them being and our family is not currently residing in the same place, we are blessed. We are so very blessed. And loved.

Anne Marie challenged me to pray. Any prayer. Just prayer out loud. I'll be honest and admit that I've not heard myself pray out loud alone in years. I've always felt I sounded a little "weird" praying out loud. It's going to take more time to get to where I pray out loud. But the prayer in my heart tonight is one of hope and thanks.

Saturday, June 27, 2009

The Latest Updates

Little Guy had his broncoscopy yesterday, which really didn't find too much. His trachea isn't as wide as it should be because it's being compressed by an aorta (or something like that), but it's still wide enough that he shouldn't be having the troubles he's been having.
The doctors waivered about whether to go back and reconsider if his hamartoma (brain thingy) was the problem, but discussion determined that it is indeed not the trouble. So we've ruled out any kind of neurology issues and narrowed it down to just pulmonology.
Last night, they started him on an infant C-pap machine, and he hates it. REALLY hates it. It's interesting because he breathes better with it in terms of the retractions, but his sats drop quickly when he's on it. So, I'm not sure what that's all about. Maybe he needs to up the O2 concentration on it?
Today, they also drew some labs on him and are looking into his thyroid. I'm doing a little research and am finding some things that actually sound a little bit like him having to do with that. (infantil myxedema?) So, I'm interested to see what the labs show. I'll know more about that later today.
So, we continue to sit and wait. We've felt your prayers and your love and so appreciate it. I'll update again as soon as I can.

Thursday, June 25, 2009

Not Much New News to Share

We've done an EEG for 48 hours. I don't know what the results are of those. The pulminology team has tried treating with steroids, which would work if it was bronchiolitis or asthma. The steroids didn't work. We do know there is a distinct thickening of the bronchial walls. We don't know why yet. We also know his retractions are getting deeper and deeper, and it's getting harder for him to breathe. Poor Little Guy. Tomorrow, Little Guy will have another bronchoscopy where they'll put a scope down his throat and look at those walls as well as his lungs.

So, we wait. Dr's say best case scenerio is that we're done here in a week. Worst is several more week. I'm hoping for the best but trying to prepare for the worst.

Monday, June 22, 2009

We *Might* Have Some Answers

This is a copy of Taffi's post to the MOFia regarding our updates. I think it says it pretty well.

We just had a team of like 5 or 6 neurologists come in (I think they were mostly interns, actually) and they had semi-good news. They want to do a video EEG to gather more concrete data, but they believe he has been having little seizures and want to see if they can record one. They believe the seizures are caused by the hamartoma. We asked if the hamartoma has gone from being an incidental finding to being the major cause, and they said yes - but they do want to see the EEG before they say 100% this is it. Good news is, it is treatable with meds for life. Bad news is, they're not sure how he'll tolerate the meds. However, meds are pretty much the only option - the neuro said you would be beyond hard pressed to find a surgeon willing to go in. They said there is a chance he may have some learning disabilities as he grows, but it's too soon to be able to say for sure. Bottom line, this will be life-altering, but not life-threatening.They were really fascinated by him, really. The neuro said that the chances of having a child with a hamartoma along with the vistibular malformations that cause the deafness are more than one in a million.

So, we don't know for 100% sure that this is the issue at the heart of all the problems, but I will say it does feel right to all of us. I have to laugh about the more than 1 in a million chances of seeing a baby with this kind of brain issues. It seems all my kids have rare thing going on. I should call TLC. Maybe they want to make a show about us.

Saturday, June 20, 2009

Swallow Study is Done :)

Sick of hearing about this yet? We had the swallow study, and it was negative. YAY!!!! I knew aspiration was NOT his problem. The SLP said she's not seen a kid swallow this well in a long time. We all need a talent, right? Tonight is the sleep study we think. He definately has much more trouble when he sleeps, so I'm interested to see what it brings us. He got his oxygen off last night and went down to 82% saturation. Luckily nurses were paying attention and came in to help him put it back in position. Sooooo, we wait.

Friday, June 19, 2009


The echocardiogram and EEG were both negative. I guess that's a good thing. Tomorrow morning, we do the swallow study for aspiration. As simple as an answer that would be, I'm praying really hard that this test is negative. My heart just tells me beyond words that aspiration is not the problem. It just is NOT the issue. If this test comes up positive, I'm really concerned that they'll stop looking and miss something. Maybe I'm nuts. Who wouldn't be after more than a week in a hospital, right? In any case, pray for Little Guy's silly test tomorrow.

Thursday, June 18, 2009

The Good News and the Bad News

I'll start with the good news. That is that prayer works. We have absolutely felt the prayers of everyone today. Liam went in for his follow-up MRI, and what they thought was a tumor is definately there and is a mass. But it is NOT a tumor. It is not cancerous. It does not need to be removed. It is called a hamar toma, and is like a "skin tag" on the brain. We will be watching with MRI tests every three months. But, for now, it's harmless.

The bad news is that the mass does NOT explain his hypoxia and rapid breathing. So, more tests are needed and we're looking at about another week or so (at least) before we get to go home. I will, of course, keep everyone posted.

I don't even know where to begin on the thank you's. There are just too many to count, and we're still only just beginning.

It's a Tumor. Please Pray.

We are going for another MRI and they're doing it STAT. I'll know more then. It's on the part of his brain that controls breathing, which would explain his hypoxia and blueness. Please pray. I'll update as often as I can.

Tuesday, June 16, 2009

Grand Central Station, How May I Help You?

Little Guy is back in the hospital for some breathing issues. It hasn't been fun. This is also my friend, Taffi's, vacation time. She's spent pretty much her whole vacation here in a room with Little Guy and me.

I thought it would be fun to document all the fun that she's had since she's been here. Heaven forbid we ever forget all that's gone on in the last ten days. Ten days! That's it. All of the following things have happened in just ten short days.

1. Five pounds of sugar, seven eggs, half of my spices, and a package of kool-aid mix were all mixed together in the Beast's bed and in the back of his closet.
2. Number One brought her breakfast in bed.
3. We broke the Sabbath to buy Snort an enema. Trust me when I tell you that he really did need it.
4. Taffi got to sit with the Beast in his new summer school classes so I could take three other kids to a dr. appt.
5. Taffi woke up to discover that her roommate (Snort) prefers to sleep in the nude. And he likes to pee the bed.
6. Taffi watched the kids so I could take the Beast to summer school. While she was there, the neighbor's very large dog dug a hole under the fence and came bounding in the back door. Two days in a row.
7. We went to the laundromat and did 35 loads of laundry. Seriously. I have photos to prove it.
8. We grocery shopped with all five children.
9. I set up a massage for Taffi and a luncheon with all the ladies at church so she could get to know them. Instead of going to those, she was with me following an ambulance to Children's so Little Guy could get some oxygen.
10. The chair she got to sleep in was broken, so she slept in the fetal position for a couple of nights until a kind soul brought her a sleeping bag.
11. The King woke up to discover that a pipe exploded and we had a flood in our room and the Beast's room.
12. A hundred different doctors gave us a hundred different explainations as to what is going on with Little Guy. None of them were right.
13. The hospital food gave me the hershey squirts. It made Taffi throw up. We're ordering out now.
14. The Beast's ride home from school didn't work out so well, and he was stranded there 45 minutes after it was all over.
15. Snort had to go stay at Grandma Kelly's because he misses his mommy too much.
16. Pretty tried to have a sleep-over with her friend, Kristen, but missed her Daddy too much. So, she went home.
17. Angela found matches and the butcher knife in the Beast's room. Don't even ask what he planned to do with those. Weird kid.
18. Snort washed some clothes in the toilet. Someone hadn't flushed it before he put the clothes in the toilet. Nice.
19. Pretty put nail polish all over herself, Snort, and the bathroom.
20. Someone (we're pretty sure it was Pretty) put my lipstick all over the dog's backside. I think the King threw the lipstick away for me. At least I hope he did.
21. The King didn't know where the kids' clothes were, so he just bought them whole new sets of clothes.
22. The hospital dryer didn't work, so we had to hang our wet clothes in the shower to dry. We look like white trash.
23. We've nicknamed the pulmonologist Dr. McDreamy. If you met him, you'd say the same.
24. There is a pair of doves that likes mating outside of our window every single morning. One actually crashed into our window once. Apparently she was happy with her husband dove. Since they only do it in the morning, we can only assume they're morning doves.
26. Taffi's flight coming here was about 6 hours late and actually got in at about 1am. Then she got stuck here with me. I went to change her flight home so she could stay longer, and it cost more than the original ticket. So, we just bought a whole new flight thinking she'd get time to play before she leaves. From the sound of things, she'll be going from the hospital to the airport anyway.
27. I think that's it, but I know there's more that people just haven't told me about for fear that my head my explode.

Honestly, if I didn't know better, I'd think I was working for Grand Central Station.