Monday, December 22, 2008

Report

Proverbs 3
5 Trust in the LORD with all your heart
and lean not on your own understanding;

6 in all your ways acknowledge him,
and he will make your paths straight.

We are still in the hospital with Scarlet. All day we have believed that she has pneumonia and bronchiolitis caused by RSV. These are very nasty diseases. Unfortunately, we are familiar with them, and I have been so sick with worry for Scarlet. Her arrival at the hospital on Sunday evening was by a dramatic ambulance ride, and something I never want to repeat again. That was after almost 2 hours spent in urgent care, and then we had 3 hours in pediatriac emergency at Beaumont, and only then was she admitted to the pediatric unit. And here we still sit. I am thankful for the doctors and the nurses, especially the nurses, who are really patient advocates as well as caregivers. Last night when we arrived I asked for(demanded) a pediatric pulmonology consultation to happen today, and the respiratory therapy staff and nurses kept telling me it would be "someone" who was an associate of this "wonderful" Dr. Doshi, and unfortunately Dr. Doshi was on vacation for the holiday. The nurses raved about him, the residents were kind of in awe as they spoke his name. Come to find out he is the Director of Pediatric Pulmonology here at Beaumont. Partway through the day, after I had asked a hundred times, I was told that he was coming, then I was told that maybe not, and then I was told that the computer system went down so they were unable to check who was coming in for consults, and the doctors were unable to receive pages because it is all done electronically. So I was disappointed, and I figured that we would just accept the diagnosis that we were given, and that I would be glad that I have the next two weeks off of work to help her recover. As my parents and Stefan were getting ready to leave for the evening, Dr. Doshi arrived, and after another long wait, he came into Scarlet's room (which we are now sharing...yuck), and spent quite a bit of time with us. We were able to explain that for the last three months, she has just not been able to overcome wheezing episodes, and that we didn't feel the medicines were helping, we didn't know how to help her, her pediatrician was beginning to question our choices, and we basically felt stuck between a rock and a hard place.

To add to that, I confessed to him that I have been scouring the Internet for any kind of literature, medical reports, studies, definitions, medical sites, patient boards, anything really, to pinpoint Scarlet's symptoms. The medicines that she is taking are powerful asthma medications, but they DO NOT seem to be effective against this wheezing. And the majority of the time, my girl is happy, eating and drinking just fine, sleeping great, smiley, and playful. It's very strange. And it's also very obvious when she does not feel well. She acts like a sick baby. But the sick baby times are way less than the amount of times she is wheezing. The wheezing is constant, sick or not sick, and it's maddening, worrisome, and kind of heartbreaking because as a parent, you never want to think that your baby is struggling for one of the most basic things: breath.

All of my constant reading late at night led me to something called Broncholmalacia
. I don't mean to say that I have it all worked out, but the symptoms of this disease are Scarlet. Along with its cousins tracheomalacia and laryngomalacia, which Slade was born with, all of these are basically congenital birth defects of the bronchus, trachea, or larynx. That's the bad news. The good news is that kids with these defects typically grow out of them by the age of 2, like Slade has.

So when we spoke with Dr. Doshi tonight, and I asked him about this, he agreed. The official diagnosis has to be made as a result of a bronchoscopy. We are going to schedule this in January after Scarlet has a chance to heal and recover from her sickness. He doesn't feel she needs the asthma meds. He cut out two of her medicines tonight, leaving her on one antibiotic for an ear infection, and a steroid for her upper airways, along with a leukotrine inhibitor, which is a safe drug.

After he listed to her for a long time, he said it could be bronchomalacia or tracheomalacia. The scope will be definitive. She does have to go through a sweat chloride test tomorrow morning to rule out cystic fibrosis. But he said he is 99% sure that she does NOT suffer from that. Please continue to pray the report from that test is a CLEAR NO WAY!

I know that no parent wishes their child to have a congenital birth defect. But trust me when I tell you that I will be so relieved to know a diagnosis. It will mean Scarlet will be a wheezer and that colds will affect her longer and harder than other kids. But it will also mean elimination of powerful medicines with possible negative long-term side effects. It will mean a peace of mind that all we hear is the sound of the air being pushed through, but that she is getting all the oxygen she needs to be normal and healthy. It will mean that she can go to daycare and we don't need to worry, they don't need to worry, she isn't spreading or getting sick from those kids anymore than any other normal baby.

I have to remember that God made Scarlet who she is the ways she is for a purpose. I don't know why she suffers with this. I don't know why any kid suffers. It will be one of my first questions when I get to Heaven. But ALWAYS, ALWAYS when I come through the fire of parenthood on the other side of a crisis, I see the Lord's work at hand. If I had taken her to the pediatrician instead of urgent care, we would have not been admitted to the hospital, or if we were, it wouldn't have been Beaumont. If I had not had prior experience with airway malacia, I would not have known what to look for. If Scarlet had not been assigned the nurse she was given last night, I would not have known to trust Dr. Doshi. If I had not kept asking for a pulmonology consult, he wouldn't have made it here. If the computers had not gone down, Dr. Doshi would never have called the hospital on the off chance to see if there was someone who needed him. The long three months we have endured may be ending.

If it's not bronchomalacia, then I trust we are in the right hands of a great physician who has an alternative treatment plan to figure out what comes next. And we can live our life with a lot less worry in the coming weeks because we know that even though Scarlet is wheezing, she is not "sick". She is healthy, she is oxygenating. She's just noisy. Some kids don't sleep. Some kids have weird behaviors. Some kids have hearing or eyesight issues. There are any number of things. My kids have a wheezing thing, one of which we know (Slade) was caused by laryngomalacia, and one for which I am hoping broncho/tracheomalacia.

At the end of the day, she is always in the hands of Jesus, and I freely admit that I have been angry and feeling forsaken for weeks. Unable to understand why my daughter can't breathe, or so I thought, I have begged and pleaded with the Lord to heal her or show me what to do for her. He has. Just not the way I thought he might. And so the verse I quoted at the beginnning of the post is one I will keep reminding myself of in the coming weeks as we continue our journey as Scarlet's parents.

Scarlet's bronchoscopy will be in January, a few weeks from now. Before he left and after he examined Scarlet, Dr. Doshi said she does not have pneumonia, and she has a much milder case of RSV and bronchiolitis than we were first told, and she will be okay.

Proverbs 3:4-6 (The Message)


3-4 Don't lose your grip on Love and Loyalty.
Tie them around your neck; carve their initials on your heart.
Earn a reputation for living well
in God's eyes and the eyes of the people.

5-12 Trust God from the bottom of your heart;
don't try to figure out everything on your own.
Listen for God's voice in everything you do, everywhere you go;
he's the one who will keep you on track.
Don't assume that you know it all.
Run to God! Run from evil!
Your body will glow with health,
your very bones will vibrate with life!
Honor God with everything you own;
give him the first and the best.
Your barns will burst,
your wine vats will brim over.
But don't, dear friend, resent God's discipline;
don't sulk under his loving correction.
It's the child he loves that God corrects;
a father's delight is behind all this.

5 comments:

Jessica D. said...

I totally understand the hospital thing. This time last year Paul almost died. We spent 16 day in the hospital one week in ICU over the holidays :(

The best advice that i received was demand what you What. What you think you need. Ask question. Even if they make you feel like you don't know what your talking about. It's all about that baby. And what Scarlet needs. Sometime if think the nurse's get so use to the situation that the tend to not use good bedside manor. Ask for another nurse if your not comfortable. File a containt with the hospital if you feel you not being treated right. (Been there.)

You'll get through. It will defiantly be a Christmas to remember. WE have one of those too:)

Danielle said...

Krista, I am with you on that question when we get to heaven! We will never understand why these things happen to children until we see God in all his glory. Please know your faith is an encouragement to others! I am happy that you finally have some answers and pray that they tests will be more conclusive. I am with you on that one too...it is just nice to know "what" is going on and then you can get on with life and deal w/the situation. I had gall stones back in 2003 and literally went to 6 different doctors and the emergency room countless times, had a spinal tap, was told to get on antidepressents, etc. before they finally foud out I had gallstones! I had weird symptoms! So, I agree you have to research and insist on things and I am glad you are in good hands @ Beaumont. Saying lots of prayers for Scarlet and you too!

Joanna said...

I am sorry to hear all that is going on. I hope you are able to enjoy the holidays with your family, resting and getting answers that are needed.

Hang in there!!

Jen Bernia said...

Krista,

I am praying for Scarlet, and also for peace for YOU!! You will all get through this. Just take each day one at a time, until Scarlet is feeling better. Be sure to take care of you, too!

kimmiedv said...

WOW!!! I totally understand what you are going through. I pray that things went smoothly w/ Scarlet's scope.

I totally understand what you are going through. My son at 8 months was diagnosed with the three malacia's via a scope. Now he is 10M & it is not getting any better. He has severe reflux which does have something to do w/ his breathing. I am at a low currently as he has a cold and you know how quickly the cold turns bad. I was searching for any info. on his condition and I came across your blog. It is just what I needed thank you. We live in MI but our son has always been seen at Children's in Detroit. Perhaps I should seek out your doctor at Beaumont. I think the hardest part of all of this is family members who just don't get it because when they see him his is breathing o.k. but as soon as he gets on the floor or goes to sleep boy oh boy his breathing is really scary.

Anyways, thank you for your blog it lifted my spirit as that is just what I needed. I will pray for your family especially your sweet Scarlet.

E-mail me any time (OH...I am a teacher too!) kimmiedv@comcast.net

P.S. Superb Website!