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!