Thursday, January 20, 2011

Another Diagnosis

Remember this post? I talked about not worrying about a possible health issue that is going on in our immediate family.

I think we are beginning to have some answers.

Caleb has been having some episodes of weird breathing and gasping for air.

At first I ignored them because I would notice them when he was leaning over things- the computer desk, the arm of the couch, the dining room table. I thought maybe the pressure of his body on the hard surface just caused him to gasp for air a bit.

But then I started noticing it while he was just sitting or as he was laying in bed.

One morning he crawled into bed with Shane and me and he was doing the weird gasping thing. Shane and I laid there listening to it and Shane said something along the lines of "That doesn't sound right...maybe we need to get that checked out." I didn't want to admit it, but I agreed.

So I called the doctor and took him in. She wrote orders for a chest X-Ray, but she wanted to wait and see if he had any more episodes. I was hoping that he wouldn't, but over the next few days we noticed that he had quite a few of them.

We took him for the X-ray and after she looked over it, she thinks he has some mild asthma.

I feel like I should be rejoicing. At our appointment with her, she was concerned that he could have possibly been having some episodes of SVT ( basically episodes of dangerously fast heart rates). I was worried that some sort of CHD was beginning to make itself present. But that was not the case and I should be so SO thankful for it.

But instead of sitting here feeling relief, I'm sitting here crying. I should be thankful it's just asthma and not a heart defect or anything else. At least it's manageable. (I guess I was really hoping to be told that I was crazy and totally overreacting....)

I watched my brother struggle with asthma his entire life. Although his case was severe, and Caleb's does not seem to be, I still see a life long struggle of keeping his breathing under control.

Our family received the most devastating diagnosis of our entire lives with Joshua. We watched him struggle and go through things that no human being should ever have to go through. So why in the world is this mild diagnosis of asthma causing me so much grief?!

I guess it reminds me that no matter what diagnosis a child receives, whether it be asthma, a heart defect, cancer, or a bad case of the flu, it sucks....because its your child. None of us want to see our child struggle or get sick. Yes, some are worse than others, and some are more life threatening than others, but any diagnosis SUCKS.

I'm going to stop whining now, put on my big girl panties, and figure out our plan of action to make sure that Caleb is well.

Thanks for listening reading my pointless pity party....I'm better now.

13 comments:

Jennehrm said...

There's nothing pointless about a pity party if it helps you to feel better :0) I have asthma and I'm no worst for wear because of it. My daughter however was diagnosed with asthma when she was 4 and we treated it accordingly. Now - shes 8 and there's no signs of it at all. She can do anything - soccer, skating, she even ran on the cross country team this year and came in 30th out of 120 in the 3 km run. Kids are amazing and I will pray (yes I will PRAY) that he grows out of it or at least manages it just fine.
Note about the praying part - I am coming around and it has so much to do with you and your amazing faith in God. Thank you again for sharing your life and your family's lives with me (us).

Anonymous said...

I remember when Evan was barely a week old, his newborn screening came back abnormal and he had to be repeatedly checked for Congential Hypothyroidism. This was happening in early October, just before Joshua died. I cried & cried over the heel sticks and over the possibility that something might be wrong with my baby. Something that is completely treatable -- granted it requires lifelong medication but I've had ashtma my whole life (moderate/severe, requiring daily medication) so I wasn't daunted by that thought. I felt horrible for feeling so sad over something that seemed so trivial when I was watching you go through all that with Joshua. Granted I was running on PP hormones too LOL! But still... I felt horrible for you and felt guilty for feeling bad for me. In the end, Evan's thyroid was fine, it was a false positive. But a friend reminded me that no matter how minor or major, when it's your baby there is no diagnosis too small that you're unjustified to feel sad over it. Yes it could always be worse. But that doesn't mean you don't have the right to grieve over whatever is making you sad.

In your case, I think you still have PTSD rearing its ugly head in Caleb's diagnosis. Yes, asthma is totally managable. Trust me, I've had it since I was 4 and I was in sports in high school and I did everything everyone else did. I just needed daily medicine to keep up but it's no big deal to me. It won't be to him either.

{{hug}}

Amy (Amy H-g) on my husband's computer again ;-)

Nikki said...

You have EVERY right to be upset, Jill! Joshua's sweet little heart thrust you and your family into a world that you will never have the fortune of being oblivious to. You're in it for life. What people on the outside (I use this term because they can be sympathetic but they can NEVER understand the struggle a CHD parent and child have to endure) don't understand is that it affects you in ways you never imagined. You over analyze EVERY LITTLE THING that MIGHT be related to the heart (for example, I was bathing Orson the other day and panicked to see purple nails and fingertips. I was so unbelievably angry for about 20 seconds, then I realized it was probably because they were cold. Sure enough, a dunk in the warm water and he was fine)

So it's a mild case of asthma, you can absolutely be thankful and ticked off at the same time. It's your child...you've been to Hell and back the last few months. You have the right to be mama bear :)

I'm not comparing AT ALL but hearing the CHD diagnosis with two of my 3 kids...I know that I was so unbelievably angry, especially the 2nd time around, but I was also thankful that they were diagnosed early and their defects were easily treated.

I'm thinking of you and praying constantly!

Nikki
Mom to Dade (Pulmonary Valve Stenosis), Emmett (Patent Ductus Arteriosus, Patent Foramen Ovale, Pulmonary Hypertension) and Orson

www.brokenheartsmended.blogspot.com

The Real Life of a Red Head said...

Amy- that is exactly it....any diagnosis, no matter how big or small is hard....

Jennehrm- thank you for praying. I'm so thankful that our struggles have brought you closer to Jesus. :o) Much love to you!

Jill said...

This is not a pointless pity party. Cry and be upset. Caleb will be fine. Asthma sucks, but it could be worse.

I love you.

Lisa said...

Jill,

I get it. I do. After Eli was born, it seemed like all of my kids were getting diagnosed with something. I never thought anything would trump the heart defects, but you know, each diagnosis was painful in its own way.

Lois said...

Jill, It is absolutely okay to be so upset with everything you have been through. It is just unbearable to think that anything could be wrong with your child especially after losing one. Last week my grandson had the flu and fearing he may be dehydrated we took him to the ER. I was so upset (his brother died 22 months ago from HLHS) that I was a wreck. I couldn't bear to have to go through another serious illness with someone who is the light of my life. Once was more than enough.

Mommy K said...

God sort of hit me with my children's diagnoses backwards from yours... My first child had severe reflux and was on medication, no big deal, right? My third child had recurrent ear infections and ended up with tubes at 13 months. I was terrified of her going under anesthesia, but we made it through. My fourth child had recurrent urinary tract infections as a boy and we found out he had VCUG and was looking at surgery to fix his kidney reflux and a hole in his bladder. I cried all the way home and was actually pulled over by a cop because I was speeding. He let me go when I whaled that my 3 month old might need surgery. (Sort of amusing now to think of, actually.) But, we prayed over Zeke like crazy and guess what?! God showed his faithfulness and Ezekiel was healed of all that by 18months with no surgery! My son's reflux improved and my daughter hasn't had an ear infection since. In the mean time I had 2 friends loose their babies, multiple friends have miscarriages, a friend's daughter have issues with seizures and my nephew was born 6 weeks early with some complications. I believe all these experiences led up to me being able to survive all that has happened with Myra. I think He knew I probably couldn't have handled such a blow without these small experiences. But, each and every one was devastating in it's own way, though they might seem trivial to other people. These are our BABIES and we have every right to be "mama bear" for them. But, it is through these experiences that God forms who He wants us to be. As we take in and respond to each experience, He molds us. And I just have to trust He will find the good in ALL circumstances. And He has proved His faithfulness to me over and over, despite each new diagnosis or delay. Who better do we have to trust in?

Romans 8:28,31 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose....What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things?"

I hurt with you as any mother who finds out their child has any kind of issue...

My children love to look at Joshua's pictures, btw. They know he was one of Myra's 'sick baby friends'. I still think of him (and your family) so very often....

Peach said...

I had asthma when I was young too. Severe chronic asthma that was onset by strong emotion, I almost died more than once. And then I grew out of it.

I'm praying that Calebs case is one his lungs out grow. I understand your sorrow and the little bit of relief you think you should feel. It's OK, you deserve to be upset and disappointed and scared. But it will be alright.

Hugs and Prayers,
Peach and Drummer

Jessica said...

its okay to cry about little things. and it is no pity party. its your son and you are concerned which is how it should be. praying that his asthma doesnt get to bad or that God heals him all together!

Young's said...

Hey Jill!

I just wanted to let you know that I pray for you and your family every night.

And I just read your new post about Caleb....I was recently hospitalized and had a very scary SVT episode....the docs don't know why but I did have my PCP give me a medication that I can take if I start to feel my heart racing. I do realize that Caleb is so little and may not be able to tell you when he is having an attack, but be assured it is something you can live with.

I'm sorry for his asthma diagnosis. That is not what you need to have to deal with right now.

Hang in there and know that prayers are continually headed your way!

Jill

Diana said...

Hey Jill!

First of all, I am sorry about Caleb! If it makes you feel any better, my brother has mild asthma and he still played baseball and ran cross-country in HS! It was mild and he kept his inhaler with him, but the only times he ever needed it on the field were: when his basball team came in first (overcome with excitement) when his baseball team came in first for the second year in a row (delerious excitement) and after his first cross-country meet (probably heavy breathing due to pride and relief)!!! It was a minor annoyance at best to have the inhaler, but overall, things are just fine! :o)

Secondly, maybe you were sitting there crying out of relief and you just didn't recognize it as relief? You said you had fears that it was a CDH manifesting itself, and it turned out to be mild asthma (which is still disappointing, but as you said, he will be fine). I know that when I go through a series of bad things in my life, I am hesitant when I receive good news or when things aren't as bad as I feared...I sort of wonder if that is really it or if the good isn't going to last. And I would imagine that is probably magnified the worse a situation has been, and it has been a rough year for you!

As always, I am praying for you and the family, but I will also send up a few thanks and praises that Caleb's heart is fine and that you and Shane caught the condition before it had a chance to be a problem!

LOVE!!!
Di

The Porn Widow said...

It's your child. I'd be concerned if you DIDN'T worry. We would do anything for our kids and when something happens that doesn't allow us to DO anything, to fix it or help it, the feeling of helplessness and frusteration comes fast and strong. I'd cry too. But now that you have, it's time to put on your happy face and teach him how to cope which is something you CAN do. :)

I'm sorry you're going through it, but I'm happy it's nothing more serious :) Happy Friday!

 
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