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.