My patience wearing thin

Had Hudson not had that very highly anticipated ENT appointment, I am certain a trip to the ER would have been had. We were up all night, he was running a low grade fever, coughing endlessly, and we were both exhausted.
Since his appointment was first thing that morning,I stayed up all night tending to his needs and praying we would make it through the night so we could make this appointment. I knew if I opted to take him to the ER before then, we would loose that appointment.

We made it.... and because we were up all night, Hudson slept through the entire appointment. Thankfully we had his MRI so Hudson didn't have to participate in the appointment a whole lot.

So... Did we come up with a plan?
We did, but nothing will change over night. Hudson's sinuses appear to have plenty of clear space where air can pass through. Where the problem is, is in the nose. The tissue inside the nose is swollen and enflamed as well as the adenoids. This can make it difficult for him to breathe, and as you can imagine, I can't use his cpap, in fact I haven't for months. The swelling and the apnea are not a good combo at all.
It was decided to put him on a steroid nasal spray, as well as continue with the antibiotic nasal spray. I was told it will be about 2 months before I should see a significant change.
TWO months!!!!!! Ugh!
The hope is the steroid will bring all the swelling down, including the adenoids, to avoid surgery. Surgery to remove the adenoids would be the last option.

I ended up getting him back on Augmentin too, because along with another fever, he started coughing up green mucous.

This all happened last Thursday.
Today the mucous continuous to drain out of his nose and mouth. I have to carry towels with us because I am constantly wiping his face and nose.... Yes, it is towel worthy, because a tissue simply doesn't cut it.
We will return to ENT in 2 months.

With all of this, Hudson has been SO cranky,and irritable. He cries and cries and cries as long as he is awake.....
No matter how much I adore him, no matter how sorry I feel for him, as much as I know this is his only way to communicate.... I am human.... and I long for peace and quiet....I wish I could take away the pain, soothe him, understand what it is exactly he is trying to tell me.... But I am left tired, frustrated, and in need of a calm, happy Hudson.... it just hasn't been so for a very long time.

My patience...

It is being tested in so many arenas of my life....

I try to understand this timeline, how I think I need things to work, how it would be perfect if God and I were on the same page with these things that are wearing me so thin....I am learning to stop praying for things to happen now, when I want it, and just trust that these things will happen when God sees fit and right... it is a very difficult thing to not argue with God why, and how....when we clearly need a break and some simple relief. Yet day after day, I struggle with things not falling into place like I wish they would....and instead of asking "why".... I am trying to replace it with..."why not"...and trust in His providence.......
I know looking back, months, maybe years from now, I will see clearly how perfect His timing was.

February 16.... Requesting prayer and a plan!

Hudson is not doing well. For some reason today he has really taken a turn for the worse.

Although he has been suffering with all this sinus crud for way too long.... months, maybe years... for some reason today his body is reacting negatively.... he has been pale, lethargic, extreme secretions...
But the worse thing of all....
His seizures have significantly changed...they have been so intense and strong it takes my breath away... he shakes and quakes as the seizure grips him... I have seen these before, but it's been a while. My head is not in a place to see this old familiar enemy...
I hate the grip it has on him... It scares both of us... and the last one he just had ...well,it even scared Hailey... and unfortunately we are used to seeing seizures, but some are worse than others and these are in his "worst" category.

My take on it is the sinus crud is so bad it is taking a toll on him.

Although we have not seen the ENT Dr. at children's, through a "connection" he took a look a Hudson's MRI while we were there last week. He determined that his sinuses were not any more impacted than that of a child his age with a case of rhinovirus.
What he did see however was...

- a deviated septum

- enlarged adenoids

- Inflammation and swelling of the turbinates

He had the nurse put a rx for a antibiotic nasal spray, which I have been using religiously for a week now. Obviously I am not seeing any real change.

Between this sinus problem and intense seizures... constant suctioning, and worrying.... I'm just ready for a plan, some resolution to this ongoing problem. I need Hudson to catch a break.... When does he get to catch a break??!!??

Please...
Just pray for answers tomorrow... A plan... Relief for my sweet, sweet boy.
I don't know how long I can bare to see him suffer with this...enough was enough long ago.




(and now he is running a fever....)

One day at a time

I am not sure I am in the right "space" to be coming here...
I'm not sure I can accurately collect my thoughts....

I am here, partially out of guilt, because a few months back I was asking for steadfast prayer for Hudson regarding Epi, and then, because of life circumstances, I fall off the radar.

So I feel a sense of responsibility to update on how Hudson is doing.

This blog was created to reach out to others, to be a platform to show Gods love and grace and mercy poured out on me and my littlest soldier....it was created to help me sort through one of the most painful areas of my life,and in return help others to know they are not alone...it was to help me find purpose in Hudson's suffering and to show God is good and loving in spite of such worldly struggles.

For those reasons, a few years ago I went from a caringbridge, very private site, to a public blog. It has made me vulnerable, and uneasy knowing I have no control who is reading my most personal thoughts.... exposing my heart, our sufferings.... my mito/seizure boy that suffers on a daily basis.

This blog will remain Hudson. It will be his journey as it was intended and I will keep it open.

I have learned that in the depths of my pain and suffering, I am a very, very private person. I hate feeling exposed.
What the kids and I have endured is tragic.... It is also very, very personal and private. All I ask is for respect and prayers... I believe in my heart the kids and I will be o.k. We are surrounded by much love and family.

In so many facets of my life, including this blog, there has been an out pour of love and support. I am humbled by the love poured out upon me and my children.... I see and feel Gods loving hands lifting us daily, in ways that bring much comfort and peace.


I want to end this part of my post by saying thank you for all of the prayers, cards, emails, texts, FB messages of concern and love.
My faith in our Lord and my reliance upon Jesus is only strengthened in having to relinquish all to Him.
I am tired of the enemy attacking my family.... I will not concede to the attacks or let it shake my faith....the kids and I trust God and his providence now more than ever.....always!

**************


My kids are gone all week....
Which is why I decided if I am going to come here, now is the time with little interruption.
Their Uncle, my brother, took them on a week long ski trip to Mount Bachelor, in Sun River Oregon.
They are playing "hookie" from school and are having a blast.
They chose no electronics... It has been non stop skiing, bike riding, game playing, book reading, hot tubbing fun!
They have ski'd half the mountain and Hunter told me both him and Hailey did jumps for the first time.... this mom doesn't want to hear about that! No broken bones please!

I can't think of 2 kids who deserve it more!



I believe we are on week 6 of the drug.
As part of the baseline screening process, Hudson had to have an MRI.
Besides hearing the awful news that Hudson's brain shows atrophy due to years of daily seizures, it also showed severely impacted sinuses. For at least 3 months now, handfuls of Rx' s of antibiotics, Hudson is still coughing and loaded with thick mucous pouring out of his mouth and nose. He struggles with breathing daily, and you can physically see the added stress on his little body. His chest X-ray for the most part came out fine. Well that makes sense because it is all loaded in his sinuses dripping down causing upper respiratory junk! Ugh!
In one week we have an appointment with ENT. I am SO anxious to get to the bottom of this, and come up with a plan. Hudson is MISERABLE. He cries and cries mostly in the evening. I can't go anywhere with him, so we usually hunker down at night.

With all of this sinus stuff going on, I feel like I can't get a good assessment of how Epi is helping Hudson... If it is.

Was really holding onto some kind of hope.... ANY change we would be wonderful.... and yet all I see is a little boy miserable, gurgling on mucous that pools and drips in the back of his throat causing it difficult for him to breathe comfortably. :(

I really try not to get discouraged.... But sometimes I feel so defeated.

Today we head to Children's .... it is a weekly occurrence and we are used to making the trip. Hudson never gets used to the blood draws... It is the most difficult part of the weekly visit. Today he will also have EKG, physical exam and possibly a chest X-ray.

What a fighter he is.... Even on his most miserable evenings, when I start to feel frustrated, I hold him close, grateful to hear his voice and feel him in my arms... I know so many moms wish they could have their child back in their arms, even if it was to hear the sound of their babies cry.


Their is more Hudson news to come....
I don't have time now, it's a whole other post.

With his upcoming ENT appointment I ask for prayers and wisdom on how to help my little guy.

Love....Deb

(a few txt pics I received from the kids)

December 30, 2011

On this day, Hudson started Epi-743....

that evening, I found out my husband passed away.

Please keep the kids and I in your prayers.