Tuesday, June 30, 2009

No New Answers, But Oh 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 Many More Updates 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

And So We Return to the Hospital

We weren't out of the hospital very long. That's just how things go sometimes, I guess. We ran into Little Guy's Deaf ed. teacher at Target on Tuesday after he'd been out of the hospital. She noticed that he was a little bit blue just above his lips, but figured I knew about it. So, she didn't say anything. Then, Wednesday night, my friend T. was feeding him and we noticed some rapid breathing. I took note of it, and tucked it away in the back of my mind. Thursday, he had Deaf Ed. When he got there, he was really working to breathe. He was retracting and blue in the face. Ms. Kristi (his Deafed. teacher) basically told us she couldn't let us take him home and met us at the ER.
His sats were at 88% and dropping. We put him on oxygen, and it was determined that he'd need to go back to Children's hospital. That was Thursday. Today is Tuesday. We're still here. My friend, T's, vacation. Nice, hun?
Basically, it appears that he has a baseline O2 level of 92-94%. He randomly desats and goes down to the mid 80's and turns slightly blue. You might be able to see it just above his upper lip in the close-up picture I've posted. (Thanks, T, for bringing your camera!) he hasn't stopped retracting since we've been here. Not once. Ever.
This has been a whirlwind of emotions for us. Doctors can't figure out the problem, even after tons of tests. We've had cardiologists, pulminologists, SLP's, ENT's, and probably a couple of veterinarians here. Seriously. That many people have looked at him. We've had a brocoscope, MRI, EKG, blood tests, and anything else you can think of. No echo, but it doesn't sound like they're going to do one. Tomorrow will be an MRI.
Some dr's have suggested we just take him home with a good understanding of how to do CPR, and then plan to take him to the ER when it happens again. Yeah. Because it seems like a good plan to hope he'll wake me up to tell me to initiate CPR so we can be put on an ambulance and sent right back here again. Right? I think not. Seriously? What kind of person suggests taking home a baby that we know for sure is going to desat his O2 levels for no good reason and just hope to be right with him and awake when it happens??!?!?! Are you freaking kidding me?!?!!?
We finally got a good pulminologist to come look at him. He has assured me that Little Guy isn't going anywhere until we have answers or at least a solid plan for how we're going to treat him. Since this is a teaching hospital, most of the alleged doctors seem to be about twelve years old. Our pulminologist is definately older than that and has much more experience. (Not to mention great hair and teeth). He has a working relationship with Snort's pulminologist and he's not afraid to ask questions and stick up for us. Thank goodness!
The food here is terrible, the nurses sometimes forget to answer the alarms when they go off, the floor I'm sleeping on is a little bit hard, I haven't seen my other children in nearly a week, and it's safe to say I'm just tired. In the end, though, I think it will all be worth it. At least I hope so.
I'll continue updating as new events unfold. Tomorrow we go for the MRI. PLEASE pray that we find a test somewhere that tells us what is going on with him and why. And, even better, what we can do to help poor Little Guy out.

Sunday, June 7, 2009

So Much for a Simple Hearing Test

On Tuesday morning, Little Guy was scheduled for his quarterly ABR. We know he has a progressive hearing loss, so we do hearing tests every three months to make sure we're keeping him aided as well as possible. Because he's a little bit older now, he had to be sedated using chloral hydrate. My other children have been given this drug before with no problem and we fully expected the same for Little Guy. When will I ever learn to always expect the unexpected with my children??

Within about a minute of being given the drug, the attending nurse noted that his oxygen saturation levels were falling. The continued to fall, and the nurse had to provide oxygen to him throughout the duration of the test. After the test, which showed a decrease in his hearing, he woke up and seemed quite responsive during his visit to Dr. Peters.

On the way home from his hearing test, we stopped off at Dr. Michele's office to adjust his hearing aids. We took a little longer than usual because we determined that his current aids no longer meet his needs, so we had to spend some time choosing him another model aid. While we were there, we all noted that his breathing was very loud and shallow and he was retracting.

I contacted Dr. Peters' nurse who instructed us to go the ER to get Little Guy's oxygen sats checked. The ER was across the street, so I went straight over figuring that I was probably just over-reacting and would be sent on our way. I was wrong. His sats were between 85 and 88 on room air. Not a good thing.

We stayed at the ER for about four hours during which time he had a chest X-Ray done showing nothing outwardly wrong. He stayed on oxygen the whole time we were there. A couple of times, they tried taking him off the oxygen, but his sats dropped quickly without the oxygen. The ER doctor wanted to admit him then and there, but the on-call pediatrician didn't feel comfortable having him there unless he was in the ICU. WHAT?!?!? ICU!?!? The ER doctor felt that it would be a better choice to trasfer him to the hospital where the hearing test was done. So, an ambulance was called and we were transported back to where we'd started to be admitted through the ER.

When we arrived at the hospital, the ER doctor removed the oxygen and monitored him for a little while. He seemed to be doing quite well. For a good 45 minutes, his sats stayed up where they needed to be. It looked like the chloral hydrate was finally out of his system, so we were released. The King came down to pick us up, and we were on our way.

We weren't driving very long when we noted that his breathing sounded labored and he was sputtering and coughing. We were back in the town where the audiologist's office was, and knew that the after hours pediatric ER would be open. So, that's where we went. We explained what had happened and Little Guy was placed on a monitor. Sure enough, his sats were variable but mostly staying well below 90%. The dr. there opted to monitor him for a while. He was doing pretty well when he suddenly lost control of his head, turned blue, and sort of passed out. His sats were down to 72% and the doctor had oxygen rushed in to him immediately. He contacted another hospital, which sent another ambulance to come for him.

So, we wound up all the way downtown at Children's hospital ER asthma unit. We got there just after midnight and sat there for six hours before being admitted. At that point, the King had to go home so he could work. He left, and I stayed behind with Little Guy. We were in our own room for about twelve hours before being switched to another shared room. I won't go into all the details of that, but suffice it to say we had no amenities on our side of the room and spent the night listening to Mexican opera and having a couple of little girls peek behind the curtain every time I tried to nurse. Little Guy began struggling again, and was moved back to a private room.

Two or three times they were ready to release us, and he'd bottom out again. So, a hearing test on Tuesday morning resulted in four ERs, two ambulances, and a hospital stay that didn't end until Saturday night. It did give us the information we needed plus some. We now know Little Guy is overly sensitive to chloral hydrate. We also know he needs $7000 worth of new hearing aids and will have some lovely hospital bills to pay in the near future. *sigh* So much for a simple hearing test.