Hospital+iPad =Sanity

Besides the hospital providing exhaustion and frequent mental break downs due to feeling confined, it also provides an opportunity to do just about nothing!

Thank goodness for technology such as the iPad ....it has been my BFF these past 11 days.
I have been able to blog, read blogs, surf, shop, watch movies, read....
I usually have such little time to read how my bloggy friends are and their kiddos, but I now feel all updated and on top of the blogging world. I have been doing lots of praying....not just for Hudson, but all the needs that are out there and all the kids and their families. So I feel good about knowing the latest and praying for your needs as you pray for mine.

My heart is grateful for Hudson's care, and at the same time it hurts. Hurts because what child should spend their summer sick and hospitalized...why do his siblings have to endure a summer like this...
I know the answer....this disease does not discriminate....summers, holidays, birthdays...at any time we can be spending those days here...it is just the way our life has been written.
So I flip-flop between feeling sorry for myself and all 3 of my kids and feeling grateful to have Seattle Children's and all the wonderful care provided.

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

Enough about me and my crazy feelings....
Hudson did great last night with his first night on cpap. The goal is he will have a more restful, solid sleep with it on, therefore helping his energy level, alertness, possibly seizure activity during the day. The doc said it could prove to give some positive changes for his day to day, but will also take time to see those possible changes.
So...from a medical standpoint he is pretty much at his baseline, and ready to go home. The timeline however prevents us from going home...it's Saturday, and I need the equipment and training on how to use the cpap at home, and that won't be happening until Monday or Tuesday.
Many of you have mentioned a cough assist for Hudson....they are going to try that this weekend while we are here...we will see what Hudson thinks of this idea!

All I have left is a few pics of my amazing little fighter...
I am so proud of his will to fight and his courage and strength as he endures so much...too much for one little boy.

Hudson on cpap during the sleep study

Feeling better after a much needed bath

A singing, toe-tapping bear from the Mitochondrial Research Guild.

Sleep Study

This will be quick....I am exhausted and have been up all night...

At 1:48 a.m. Hudson had 10+ episodes requiring the start of cpap. His sats were dipping a lot last night along with his heart rate. He tolerated the process so well, like the little soldier he is. The official report will be back this afternoon but it more likely than not that we will be here through the weekend trying cpap at night, and see how it helps. Like I said this is speculation, and won't know for sure until this afternoon.

It's been a little easier doing quick updates on FB...I have also posted some pics....so if any blog readers want periodic updates you might want to find me their.

Thanks for continued prayer.

Getting answers

We have been in patient almost a week now, and it is still in question how or why Hudson was SO sick.

To re-cap...
He was highly acidosic (?) when we arrived in the E.R. He was having respiratory failure and ran a temperature for 5 days. His chest X-rays showed nothing significant. His gases and blood counts stabilized with bi-pap, bi carbonate, and he has been on several antibiotics. Nasal swab came back negative for common bacterial infections.


Today is day 4 fever free. He is managing sats fine on his own since getting off the bipap, with the exception of Sunday night he was dropping in the low 80's and they had to put a mask on him ( he's a mouth breather) apparently atbsome point he pulled the mask off, in the morning the nurse found it lying on his chest and he was sound asleep.

So....

The plan is....
A sleep study has been scheduled for Thursday night. The concern is that he may have some underlying respiratory issues and this respiratory infection exacerbated the issue. This study will indicate if there are any obstructions, apnea, etc. It should give us a clear indication if he needs a C-pap at home for bed time. The Pulmonoligist also indicated it would help with the gunk we so often hear Hudson struggling with as it draws it out.

I am having mixed emotions...
I am happy they were able to work this in, as it is typically done out patient in the Bellevue Clinic. I am feeling like my fear that this disease is progressing may be coming to fruition. His clinic Pulmonoligist had mentioned sleep studies in the past but didn't feel he was really a candidate. Now he is. Is this disease now affecting his respiratory system? That was what I feared. I guess we will find out after the study is complete. It could be yet another integrated part of this life we lead...a disease with no cure leads to the possibility of progression and change...it SUCKS!!!

If Hudson remains stable we should get out of here Friday. Praying the trend continues and that happens...I feel so displaced being away from home for almost a month and then straight to the hospital for over a week. Life just seems so uncertain these days. The things I am certain of...
Gods faithfulness...his love and strength, the joy all 3 of my kids bring me, The love and support from my family and friends...I can't survive all of this without these in place.

For now I focus....my precious boy is here....I can hold him, kiss him, savor each and every moment God gives us....he is such a fighter and is so strong...together we will fight this disease!

This is how I found Hudson this morning...across the width of the bed...not sure if he is trying to give the nurses the "finger" or is just in deep sleep thought! Lol

Love from strangers

I say strangers, because many of you who read about our journey, have never met us face to face. In that regard, I say stranger....

In many other regards you are no stranger at all....
You are the mom or dad who knows the pain I feel daily watching your child struggle with illness, you know the fears and joys this life encompasses when your child is anything but typical...
you know that unconditional love you feel and receive from your child although you have never heard those words pass through their lips.
No....you are no stranger at all to my world.....
You too have sat minute by minute wondering if your child will survive all that stands before him/ her....
you worry like me....
you cry like me.....

you treasure the little things....
the smell of their hair, the touch of their hand, the way their helpless body feels in your arms....you know they are completely dependent on you for everything....and there is nothing you wouldn't do....give up...sacrifice....for the sake of their well being.

To all of you...the "strangers" who have a heart connection to me like no other...who glimpse into my world yet live a similar existence....you who have been praying relentlessly for a boy named Hudson for whom you have never met...I thank you.

For the emails, such as this one.....


"Just wanted to tell you that sweet little Hudson has been on our hearts!  We've been praying continually for that little stinker!  Thinking of you, praying that God puts his healing hand on Hudson, that his fever breaks, and he won't need the Bipap.  Praying that God gives the doctors wisdon to treat Hudson with the best care and that God gives you strength!  We love that little boy and he is always on our minds.  A**** refers to him as "Hudsie."  My in-laws have also been praying for him!  Special prayers all around going out for him!  No need to respond, I know your consumed with everything going on.  Just know that you and your angel are in our prayers!"


.....I thank you!

To another "mito mom" Clara-Leigh, who made me and Hailey the above mito awareness bracelets (which i love, btw!)and recieved while in the hospital, and then left me this message....

"Sweet Deb, We are praying, especially for Hudson and Lucy each night. My girls actually prayed for them out loud before I could get to it tonight. You know, God hears the children first usually!!! As for the bracelets, DO NOT send a single red cent to me for them....ever!!! Enjoy them, and if you want more, just drop me an email!!!! I am so touched you took the moment to let me know you got them, and not many of them had "believe" on them as that came in a pack with other words, and the pack went rather quickly. Let's hand the credit to God on that one!!! I hold you in my prayers and heart and hope to see some improvements in your precious angel Hudson's temp very soon. In Christ, Clara-Leigh"

....I thank you!

To the Mhyre Family....as I walked into Hudson's hospital room there was a cute Curious George ballon tied to his hospital bed...some color and cheer to an otherwise depressing room...a note attached read... "Debbie and Hudson...Thinking of you and sending hugs and prayers"

.....I thank you!


An example of so much love from those we have never met...
So humbling to see Gods people and His love all around us. To know Hudson is to love a beautiful angel boy....he has blessed so many and preaches a sermon with his presence, his fight, his daily living, which is all instrumented by God....Hudson is such a gift to so many.

I continue to be utterly grateful to each and every one of you who faithfully pray for Hudson and our family....friends, family and strangers alike, you all are priceless gifts to us in our lives...God bless you all!!!



 

Things are looking up...we moved 3 floors down!

We moved....We are out of the ICU today!
Hudson has been fever free for 24 hours as well as off the bi-pap.
He is off I.V. fluids, and is tolerating his bolus feeds just fine.
He is getting his antibiotics through I.V. And is still coarse and junky sounding, sleeping a lot through the day, but all in all huge improvement.
He is under the care of the respiratory team...seizures have remained baseline for the most part since he has been here.
After no sleep for 5 nights in a row, my mom insisted I go home last night and sleep. She stayed with Hudson...today I feel a little more human. It was weird being home after not being there for a month. I have to say my bed has never felt so good. It was hard to leave him,but in the icu, Hudson has a nurse sitting in their at all times...all the nurses and doctors were fabulous...he was well taken care of. Now that he is on the regular floor, I will have to attend to him a lot more...

So many have been praying....between blog, Facebook,texts, and emails, I am blessed with such love and support...Hudson is loved by so many...it is all very humbling and comforting.
I know God has been walking with us.....it is one of those things as you look back on and the chain of events, that you can clearly see God at work...

It has been one of the most stressful, scary situations to be in....I am so happy to be seeing "the light" ....today is the first day Hudson looks better, his eyes have even been open more throughout the day too.

My love and thanks to all of you who have been faithfully praying for my baby...please continue...Hudson sends his love and thanks too!

Friday's Rounds..

Hudson has a 104.5 temp this morning. He has been on several different antibiotics and nothing is working. Still on bi pap but the skin is breaking down under the mask, so they are going to try and give 2-3 hour breaks off. Wound care will consult. If breathing issues persist and they couldn't use the bi-pap they would have to place a breathing tube. (praying this does not happen)
when the nurse took off bi pap to suction she said it smelled of a bacterial infection in his mouth.
More blood draws...
Another chest x-ray...
Possibly a bronchial scope to culture...
Still frothing at the mouth...

There is just so much unknown as to why he is spiking such a high fever and the cause....
We need answers! Praying for answers so we can help him...he is uncomfortable and agitated at times and was given morphine...

Exhausted and worried...please pray for my baby!

A little clarification

The kids and I took a morning flight back to WA yesterday, went straight from the airport to the hospital E.R.
I knew he was sick....I thought 3 days of fever and Vegas heat he needed I.V. fluids and we'd go home....never imagined this...
I have never seen him so sick....I have never seen him need a bipap....with days of no sleep and seeing him like this it all feels very surreal .... I was told had I not gotten him here when I did he would have crashed hard....his #'s across the board were bad...I don't even know, other than by the hand of God, how we were able get from Nevada to WA so seemlessly, when it was pure chaos on our trip down. One minute I am laying pool side, the next I am on a plane....divine intervention!

This morning his #'s have stabilized. Rounds have not been made but I am hopeful maybe the bipap will come off and we will see if he can maintain on his own. He has continued having a fever but this morning that is better. His poor little face is so swollen...I wish I could scoop him up and hold him....there are too many leads and he is so out of it....

My kids are with my mom...always so grateful for my family...family is everything in such an uncertain life we lead...if Hudson's nasal swab comes back normal we will be out of isolation and my kids can hang with me, otherwise we are isolated!


Praying we move forward and in the right direction today...sorry this post is so random...,I haven't slept in 3 days, so I am using that as my excuse!

Thanks for the prayers...Thank you Jesus...for tugging at me...and aligning everything up perfectly so Hudson got the help he needed in time. Although we are not out of the woods...I have a grateful heart!

(as I post..they removed the mask ... Off for 1 hour to give his face a break, at 10 they will check his gases and see how he is doing on his own)


UPDATE:

AFTER ROUNDS;

He will stay in PICU
They will lower the settings of the bipap but not remove it
We will try and give him a normal bolus feed and see how he tolerates it
We believe the respiratory failure is indicative of respiratory infection and not the mito disease ( that is certainly my hope as well)

PICU

Hudson is in the ICU...in need of prayers..Fever, on IV drips, Bipap,acidosis ...have yet to find the cause...likely severe respiratory infection

A living angel....

+ 2

= my 3 H's...love  'em!

An alternative for seating and it's NOT medical!!!

Flying to LV limited us to what we could bring for Hudson in terms of equipment.
I only have his stroller for seating...otherwise he is on his back.
His P.T. has this marvelous idea...and it is not "special needs" and did not have the medical price tag attached!

Whats great is that he we can form his body in it to keep him aligned, and we can tilt it upright as little or as much as we want. The only problem I have found is that because he does move, he slides down towards the floor the more upright he is. All in all, a great tool...I may even get one for our WA home.

I got it at Target.com for $100.00/free shipping. The outside case zips off and is washable.

It is getting used by the other special kids in my life with not so special needs :)....they seem to think it great fun to not only lye on but also to put on a WWF smack down show.

The Holy Alphabet

The Holy Alphabet




A lthough things are not perfect

B ecause of trial or pain

C ontinue in thanksgiving

D o not begin to blame

E ven when the times are hard

F ierce winds are bound to blow

G od is forever able

H old on to what you know

I magine life without His love

J oy would cease to be

K eep thanking Him for all the things

L ove imparts to thee

M ove out of "Camp Complaining"

N o weapon that is known

O n earth can yield the power

P raise can do alone

Q uit looking at the future

R edeem the time at hand

S tart every day with worship

T o "thank" is a command

U ntil we see Him coming

V ictorious in the sky

W e'll run the race with gratitude

X alting God most high

Y es, there'll be good times and yes some

will be bad, but...

Z ion waits in glory...where none are ever sad!



So when life throws you a curve, remember, that

the shortest distance between a problem and a solution, is the

distance between your knees and the floor. After all the one

who kneels to the Lord can stand up to anything!

good-byes are never easy (unless its a med!)

This morning I had to say goodbye to my family...they are heading back to Washington.
We had so much fun this last week...every moment has been filled with lots of laughs, relaxation, pool playing, too much eating and drinking, a little gambling, some adventures, lots of spoiling, great memories made.


Hailey ..scootering around the pool


I am not good at saying good bye to the ones I love. I am very family oriented, and love making memories filled with those I love...
mom and I both cried as we hugged and said our good bye's.

I guess no matter how old you are...you always need your mom...

It is eerily quiet now...
Hudson is sleeping, kids are vegging, Paul is at work.....

We made alot of great memories over the past week...
we had some great BBQ's, a fun and memory filled 4th of July...
Mom and Fred got the kids Razors for our LV home, so they have been scootering around like last year...
Unfortunately I can't post many pics...my camera broke and I have been using my moms and don't have the cord to download. I have a few from my phone, but the best of our week were on her camera.

I bought a new camera yesterday, so I now have to learn how to use it :)

As well as our goodbyes to family this week, we say goodbye to Lamictal. (a welcome goodbye..with no tears!)
Hudson is officially off 1/5 seizure meds...yahoo! This is one I was hoping he would get off of, and he did fine....I have not seen any seizure increase as I took him off over the past few weeks. Yesterday we increased the Clobazam another 2.5mg. So he now gets 2.5 a.m., 2.5 in the afternoon, and 7.5 in the evening. Hoping to see less seizure activity. I definitely know adding the Colabazam has made a change in seizure activity for the better. He is having around 5-6 tonic seizures a day, no clusters of spasms, no vomiting. He is having lots of little jerks, but I was told they are not seizures but myclonic jerks.
He still is gunky, coughing up thick mucous, but I am hoping the desert air will dry him out, I know my allergies have gotten alot better since coming here. Yesterday was a cloudy but warm day, so I shared my chaise lounge chair with him...he loves the heat...he is so mellow and relaxed laying for a good hour with me....

Last night we went to U-Swirl frozen yogurt, and Hailey really wanted to give Hudson a taste. Hudson takes no food by mouth. He used to eat baby food over a year ago, but with seizures worsening over the year, his swallow did too, making it unsafe for him to eat orally.
Hailey loved the days where she would help feed bites of baby food....I did too...it makes me sad that he gets nothing orally...but I can't cause him more problems....right now feeding would cause serious problems. Maybe if we gain more seizure control that would change...at least that is what I have been told.

I couldn't resist letting Hailey give him a taste last night...

He LOVED it...lapped it up like a little kitty cat...so cute and wonderful to see him enjoy something.

When Hailey was all done, he started making noise, as if to say "more!"
He did get a little more gunky, so we stopped...I also couldn't risk any tummy issues.

Today will be a clean the house day...
the kids are anxious to get in their room, as they gave it up since we got here....lots of cleaning, laundry, etc. just like home...

Next week my brother is coming up for the weekend, so we won't be too long before more family will join us here....
it is a blessing to have a place like this where family can come and gather...make memories, and enjoy time together...its a bit strange for me to be so isolated from my friends and family who I am surrounded by all year...I have no friends out here...my family here is the kids and Paul....hoping to get some well needed family time now that it is just us...

I will certainly miss my afternoons filled with my mom and Fred...they spoiled me....I didn't have to make dinner, I got drinks delivered to me at the pool, kids were attended to and spoiled as well.

My mom reads my blog, but never comments, I guess we talk to much for her to "comment"....

Hey Mom...

thanks for getting us down here....thanks for all you and Fred did while here...we had a GREAT time and I miss you guys already!

quick LV update

Our adventure to Las Vegas was interesting...
I didn't have much luck with the luggage...
got charged and extra $50 for my big suitcase...he asked if I wanted to move stuff out of one suitcase to another to lighten the load, but I opted to just pay.
Next bad luck was security....

I had taken 2+ months worth of meds....this is the case I carried them in...they had me remove every liquid med I had, scanned it through a individual machine, I had to remove the 10 cans of formula I had carried on as well, I was given a full body search, Hudson was searched....the stress level was through the roof...
seeing his meds scattered all over the place as the TSA's were throwing them around...
the process took at least 30 min...leaving us just enough time to run to the gate and get our seats. We were close to the last ones on.
Prayers were answered...
we got 6 seats clear in the back of the plan straight across. Hudson did amazing. Quiet as can be....

He was awake the whole flight but drowsy. He crashed about 30 min. before landing.

He was so good. Never cried....my little angel.

Hunter and Hailey were very excited. We had to get up at the crack of dawn...so we were all pretty tired.




My mother, Fred and Kate are all here still. We are having a great time...it is SO hot, but it feels amazing!

We are very busy with all the family here...
Hudson is doing ok so far...yesterday was his first day in the pool, and lying out with us.
He has been pretty sleepy, sleeping until 1p.m. typically. Getting him up for the flight at 4a.m. messed up his internal clock a little.

Thats it for now...a 111 degrees day ahead....must work on my tan ;)....aahhh...summer has arrived for us!