CF

So today one of the doctors informed me that because Hudson is dealing with this chronic pseudomonas, and because he is in need and on many of the treatment regimens for Cysytic Fibrosis, they are going to do a sweat test to test for CF.

I am told they think it is a slim chance that he does have it.

So please keep this is prayer.....we don't need to add to our list of ailments and diseases.

1 week down....1 to go

 We have changed our plans....

Coming into the hospital we thought we would be coming home at the half way mark with picc line in, and antibiotics. However, after much thought it was really a no brainer. Hudson needs to stay in the hospital for as long as he is on this picc line. He is getting respiratory therapy, similar to that what I do at home, but they are doing it 4 times a day. They are also very aggressive and getting alot of gunk out of him....I am definitely not as aggressive, I'm his mom, it breaks my heart to upset him or cause him more hurt or discomfort.
I also could never have the time in a day to treat him 4 times a day on top of living in the real world; two other kids, school, sports, activities, etc, etc.
So what's best for Hudson is to remain in the hospital the entire duration of intravenous antibiotics.

He is doing well. He did amazing getting his line put in and came out of the anesthesia like a rock star. He is such a strong kid.

Praying we see big improvements this week. It's been slow, but it has also been forever that he has been suffering with all these respiratory issues. I don't expect things to clear overnight, and they are not too encouraged that we will get all the pseudomonas, but my prayer is that we see a significant change and that we can get to a new and better baseline.

Quick Hospital Update

We got here Monday, they tried to place the picc line without anesthesia and Hudson was not having it. No surprise, my little fighter was so mad they couldn't place it. So he has had an IV since Monday getting two different antibiotics.

Today (Wednesday) he will be put under anesthesia to get the picc line placed. As you can imagine, I am really worried about this process. Anesthesia can be very tricky and difficult with mito.
Prayers are appreciated as always. I need him to do well with this whole process. I need to be on the other side of today with Hudson stable and well.

The unexpected call

I was feeling optimistic how things were going. The combo of nebulizer treatments, albuterol, and vest therapy, it seemed to be doing its thing, making a difference. There have been still alot of secretions, but they had thinned out, the color changed from yellow-green to frothy white. When I finally took a sputum culture it wasn't looking as nasty as it was prior before we started the above treatments.
I felt like the floor fell out from under me when I got a direct call from Hudson's pulmo asking me to call her, giving me her direct office line. I knew it wasn't good. When I found out his body is still growing the bacteria pseudomonas, I was devestated. Hudson's lung is also partially collapsed. We had to come up with a plan, an aggressive plan. With flu season right around the corner this is just heartbreaking news for me and Hudson. Mito/pseudomonas/secondary illness could be devestating.

The Plan:

Tomorrow (Monday) we go inpatient. Hudson will be getting a Picc line placed and will get intravenous antibiotics for at least two weeks. If he does well, we won't have to stay inpatient the entire two weeks. I will administer at home through the Picc line.
I was told to be "cautiously optimistic" They don't believe we will be able to kill all the pseudomonas. We will clear his lung, and the inflammation, and kill off as much as possible. The bacteria burrows itself in the tissues making it hard to reach and treat. They believe this has been in his body longer than we think.

Medicine may not eradicate it all.....but God is the greatest physician. Your prayers for this bacteria to leave his body entirely would be greatly appreciated. Also that the procedure of placing the Picc line would go smoothe and with little trauma to his body.

I will try to update during the week while in the hospital.
Thanks ahead of time for prayers for Hudson, my children at home, and my worried momma heart.

Best News Possible

Hudson's CT scan showed no signs of damage to the tissues of the lungs or bronchial area. There was a specific area they were looking at that is commonly affected by pseudomonas. Praise the Lord Hudson shows no signs of progression or damage in this area. They also scanned his sinuses....NORMAL....not a term we hear often.
The pulmo was hugely concerned over the right side of Hudson's chest. She said it is completely full of mucous. Not a big surprise to me. We have started a regime of albuterol, saline nebulizer treatments, and then his vest therapy. The whole process takes us over an hour and is done twice a day. Thankfully Hudson's caregiver is familiar with using the nebulizer, so she is able to do one of the two daily sessions for me.
Next I will need to get a sample of what he is coughing up through a trap that attaches to his suction machine.
Once I get that to the lab we will find out what exactly it is that has inhabited that right side of his chest. The pulmo believes he is going to need a highly aggressive and long series of antibiotics.

My son deserves a cape...
If you listened to him breathe through this crud, if you saw what he coughs up, if you witnessed the toll it takes on his little body....he truly is miraculous. He demands so little, suffers so much, and fights for survival every second of his life. He inspires me....because he wants nothing of this life...toys, clothes, money...things just don't matter. He only has a will to live, and its not even an existence that any other human being would desire.
He fights...every day....through seizures, weakness, mucous, blocked lungs, meds, tube feeds, therapies...
He fights so hard, and I am so grateful, and yet my mind can't wrap around how hard he has fought and survived the last 6 years, and how hard he continues to fight.
Yes, Hudson is a superhero....he is my hero, and I see his cape flowing behind him morning, noon and night as he carries a giant S on his back.

The End of Summer....

I can't believe this is the last week of our summer ...
for the most part it has been a really great couple of months. The weather here in Seattle has been absolutely gorgeous and warm, Hudson has managed to stay out of the hospital since May, I was able to jet set to CA kid- free, we did a family trip out of the country (Canada), we have enjoyed friends and family, bbq's, swimming, birthdays....the list goes on and on!
I am not ready to send my kids back to school, and all that it entails...early mornings, homework, schedules, therapists....I need another month or two of summer!

Hudson is still struggling as usual, with seizures and respiratory issues. I believe the vest has saved us from several trips to the hospital. I shake him 2-3 times a day. I think it keeps things loose and prevents him getting clogged up and into respiratory distress and failure. I guess the true test will be this fall/winter when the cold season is at its worst. I do think he has caught a few colds over the summer but has pulled through without hospitalization because of this vest. So I am really grateful we have it and serving its purpose.

This Thursday, I take Hudson first thing in the morning to Children's for a CT scan of his chest and sinuses. Thankfully, we do not have to use any anesthesia, but he needs to be sleepy and still. I will admit, I am a little nervous for what those results will show. He struggles so much in this part of his body, but answers and a new treatment to help this struggle would be the best case scenario. Remembering to lift Hudson in prayer on Thursday would mean so much.

 My trip to CA, wine tasting.

Canada

 12!

 Surprise party at GWL!

Easing back to our routine

Thanks all for the prayers...

We got discharged Friday afternoon. It was a really long week, as I literally stayed inside those hospital walls the entire stay. My mom had a cold, and so I couldn't risk either one of them catching anything more, so I powered through the week with Hudson ....sleepless and weary.
I still feel like I am recovering.
He is doing okay. We did have a go at the therapy vibrating vest the entire time we were there. The RT said she has never seen a kid cough up so much stuff after using it. So guess what? I am getting trained so we can use one at home. I am hoping insurance will cover the very unfashionable $16,000 vest...not its not a Versaci or Gucci....it's a Hill-Rom Therapy Vest with a huge price tag!!!
Our hope is it will keep him out of the hospital if we use it on a regular basis.
Hopefully by the weeks end we will be using it daily.
Hudson is still super gunky like always, but sleeping like a champ and feeling much better.
Our plan for now is to get a CT scan sometime this summer of his chest. We need to know if the pseudomonas has been eradicated, or if it has buried itself deep into the tissue of the lung. Praying it is gone...because worst case scenario, he would need surgery to remove that portion of the lung...and that is just not an option for Hudson....so we don't entertain the idea. Hopefully the CT scan will just give us a baseline of what his chest looks like.

Hudson and I were happy to be home for the 3 day weekend, to be with family, and to be in our own beds!

I thought I would share some pics of recent big happenings over the last few months...

 Hailey turned 9

 

 Hudson turned 6

 

I turned...(never mind that one!)

How did we get here????

A week ago Hudson was doing so much better, and I thought we were finally getting to the bottom of his ongoing respiratory struggles...he sounded better, looked better, and NOW look at us....

We found ourselves driving to the ER at 1:00 a.m. this morning. We sat sleepless and miserable in the ER from 2a.m. until 10:00 a.m.
Hudson is on bipap, getting CTP every 4 hours with the therapy vibrating vest, on two I.V. antibiotics to treat what looks to now be pneumonia, as wells the pseudomonas, as well as rhinovirus!

We are a HOT mess!
I say we and in include myself in that equation because I am as sleep deprived as they come, and I froze sitting in the ER for 8 hours sitting in a hard chair in a stupor....I dream of a hot bath and sleep , but that is not happening as long as I am here. Not sure how long we will be here this time around.

So your prayers are once agin appreciated.....Hudson must kick this once and for all as my little champ continues to go to battle.

Breathing Easier

Finally!!!

It took almost a week being on Ciprofloxacin to finally start seeing a change for the better. His coughing is SO much better, and no more long coughing spells. All the thick gunk he would cough up is less in volume and has thinned out alot. I still am getting some thick goobers but nothing like it was for the past several months.
Definitely breathing a sigh of relief....so good to see some relief in this area where it has been such a struggle for so long.
I honestly don't even know what Hudson's baseline is anymore, it has just been so long since he has been at baseline. Please continue to pray for this to clear up...it is not totally gone and his regimen is for 21 days, so we still have time to see the antibiotic continue to do its thing. In the meantime I am just so thankful to see some improvement.

Guess who turns 6 next week???

Fighting Infection

Hudson needs your prayers.

This will be quick....my iPad /blogger doesn't want to do this post for some reason (very frustrating)

Hudson was put on Prednisone and antibiotics after seeing his Pulmonoligist last week. We did a chest X-ray and it was unchanged since his last hospitalization. She had me take a sample of the very thick mucous he is coughing up. This poor child has been coughing up the most vile, thickest mucous I have ever seen. He wakes anywhere between 4-6 in the morning and coughs for 30min to and hour non stop for a good month now. I sit by his bed and suction so he doesn't choke, aspirate, suffocate.

I took the sample in to the lab and got a phone call this week from the pulmo clinic.
Hudson has a bacterial infection positive for Bronchitis. He is also growing another bacteria called Pseudomonas . I was told if not treated effectively it can cause long term damage. We changed to a new antibiotic to better treat these bacterial infections. We started this new one on Tuesday night.
I have yet to see a change...it is likely to soon. I am suppose to call the nurse to let her know how he is doing. If he doesn't start to improve, he will need to be admitted and get intravenous antibiotics. Clearly I would like to avoid a hospitalization. However ultimately I would give anything to see him have a great improvement to this never ending respiratory struggle we have been dealing with that feels like forever. Hudson suffers enough with mito and seizures....all of this is just too much .it is heartbreaking to see how much he endures. What is amazing is for the most part his spirit is pretty calm and happy and relaxed. No big crying jags, or increased fussiness. I have noticed bigger, longer seizures lately, which is tough to watch.
This antibiotic is a real pain ...it can't be given with dairy, and of course Hudson is only fed Peptamin Jr.  through his gtube. So, in order to not totally mess up his normal feed/med schedule, I am having to wake at least 2 hours prior to his first a.m. feed and two hours past his last p.m. feed. The formula will ultimately make this med inaffective if given together or within the 2 hour min. time frame.
As of now I will be giving him this for 21 days....I am one tired mom!

Prayers....
we just need prayers something will give, he will get better and stop suffering so much with respiratory issues. What scares me the most is the thought that maybe his respiratory system is deteriorating because of his mito. The Pulmonoligist wants a CT scan done on his chest this summer. I am sure it will tell us what state his respiratory system is in.

I have all the faith Hudson will fight through this like he always does...he is such a vessel of strength, such a mighty warrior!

Spring Break

A slew of emotions flood me as spring break arrived this week....

It is a serious mix of emotion....
My kids are off all week, I don't have to work...wouldn't it be fun to whisk away on a plane somewhere tropical, hot...where there are beaches or swimming pools and I could sip on some sweet fancy drinks with umbrella's. Sometimes it feels like everyone around me is doing just that...making memories with their families, feeling the sun on their skin, enjoying time off.

In my world I never get a day off...I have to get up at a certain time to make sure I keep Hudson on schedule, I can't jump on a plane, or surprise my other two kids with a fun trip to Disneyland or Hawaii or any place other than WA. We can't go farther than a drive in the car for the day. Hudson is so medically fragile, I can't take him anywhere really. Home is the best and safest place for him.

Monday was our first day of break...I spent it with Hudson at Seattle Children's Hospital. Hunter and Hailey were happy they didn't have to go when I offered to let them go to "Spring Break Awesomeness" A teacher from their school is doing a day camp throughout the week and all the money goes to their sister school in Liberia.

Day two was me making an attempt to surprise my kids with something I thought they would enjoy. It was a pretty spring sunny morning so we drove to the Harbor, parked and walked along the harbor...the air was crisp, and the sun was shining and it felt glorious!

We walked to a little diner in the Harbor and had breakfast. Hudson was with my mom that morning, so it was a little one on one time with two of my favorite little people. On our way home Hailey had said something pretty profound, and strange in a way.....

"I think we are lucky to have a sick brother with a disease because we don't have to worry about spending money on expensive trips, we can just stay home and do fun things together here."

I am not sure what exactly she meant by that. I did tell the kids it is not where we go or what we do, it is just being together that matters...because on the flip side of feeling sorry for myself that I never get a real break or that my kids have never had a real vacation in the last 5 years...is that I would never ever want those things because the price would be too high...

 If I could keep Hudson forever and do what I do on a daily basis for the rest of my life, I would without hesitation sign up. He is my world, he is a living angel that I have been appointed to, to love on and care for the rest of his life.....however long that may be. Every day is a gift. Every day I am grateful for his presence on this earth....I would bask in his presence for the rest of my life and never bask in the presence of an exotic beach, or a trip to Europe, or any amazing vacation that I could dream up....

It is because I know that there will be a  Spring Break that may look so much different than today, that I am able to be grateful for this spring break at home with all 3 of my kids. As sick as he is, it is with a grateful heart that I can say he fights on, and continues to go to battle each and every day as he is so strong and such a warrior. This life with mito is so uncertain, and so scary at times. I see Hudson struggling more and more with respiratory issues, my heart aches to see what he endures on a daily basis....When I think of the possibility that I may one day have to live without him... I fall apart. It may seem cold and heartless to think those things, but it is the reality of this degenerative disease. Every day is a gift....every moment, every snuggle, even the suctioning, the pushing of meds,thoe hospitalizations, the lifting and carrying, the diapering....all a gift, because one day I will mourn doing those things....and to me that seems unbearable.

So....

I imagine his legs walking one day, running....I imagine his hand grabbing mine.....I imagine the feel of his arms around my neck....I imagine what a kiss from him would feel like.....I imagine the conversations we one day will have.....

I layed my head down last night and prayed for him as I always do....I imagined Jesus touching his frail, broken body and I imagined healing....I prayed and asked for healing as I have the last almost 6 years.....and then I prayed if it is the will of our Father.....and I know in my heart this is how Hudson must live on this side of heaven. He continues to teach though he can't speak...he is one amazing little boy.

I continue to try to do my very best balancing parenting two healthy vibrant kids and one very sick child...all while doing it as a single mom. Thursday I am taking all three of my kids to Olypmic Game Farm in Sequim. Hudson can go as we stay in the car and drive through a "zoo" of sorts. Hunter and Hailey are super excited. No, its not Palm Springs or Disneyland....it is just me trying to make the best of this life we have been handed....trying to teach my kids the value in what we have and showing them how to find joy in what we have been given. Whether they ever know spring break to be different than they do today, I think Hudson continues to teach all of us how to be grateful for the simple things in life.

My Little Brother

 As I was going through Hailey's Friday folder  containing her work for the week, I came across this.

Sometimes I think the kids only see Hudson and his illness....nothing on this paper says seizures, mito, or sick....
My heart swelled when I read her words about her little brother...So beautiful!

Time

I am not sure how to come back here after completely hijacking this blog.
I'm not sure if I can give this the time and energy it takes to do the whole blogging thing.

I must rephrase...I am certain I don't have it in me, I am certain I have likely lost Hudson's faithful readers and prayer warriors, I am most certain of all the reasons I don't want to come here....

But then I am also certain I have heard God whisper to me several times over the last 5 months that I have not been blogging, and I am convicted by what I hear.....

that my life song is Hudson's story...if I don't blog, Hudson's voice is not being heard, and in return Gods goodness is not being glorified. I had put an end to blogging Hudson's story out of selfish reasons.
All I can say is we are back...
I'm not sure how often, and I'm not going to try and back pedal and replay the last 5 months, but I will do my very best to share my Hudson with the world, as he continues to fight his battle with mitochondrial disease and multiple seizure disorder. His story will be shared so his voice can be heard to the glory of God.

The story has not changed much....
Hudson still battles seizures daily, he has mito with no known origin, he has been in the hospital more times in the last 5 months than I can count (we sit here today inpatient under respiratory distress) he has physically grown a ton, he is a warrior beyond comprehension, and he soldiers through this most difficult life with amazing grace and strength.

We have been through a lot....more than most....but we stand because we don't rely on our own strength but only on His strength, our eyes are fixed on Jesus....He is our Rock.