day four

Day four...not so bad. Jonah took a wonderfully long nap! I even snuck away to the bank and post office and when I came back he was still snoozing! His pulmo doc came in and we chatted a bit about stuff.

Stuff. So the up to date plan... we will do a bronch right before his next clean out and admitt him from there. That way he will have super clean and shiny lungs....okay I dont know about shiny, but clean, goop free? YES! Sounds like a great plan to me! Im sure J will agree.

Jonah started a strange breathing pattern this evening. RT came up and listened to him and he sounded clear but had nasel congestion. I pointed out the pulling under his neck with each breath and she decided to deep suction him. I left the room but when I came back the RT and the nurse were overjoyed with what they pulled out of his nose. I will spare you the details and just say it was a lot of snot! SO now, as I type they are giving him his CPT and hooking up a "bubbler" to his O2. (humidifier that goes through his tubing) All seems to be better now. He is not contracting and is breathing with more ease. I will be going home to catch some zzz's soon, I am hoping for another functional day tomorrow.

day 3

My my my, what a day, day 3 has been. We were so busy the day just flew bye. Jonah spent the morning in the FYE (forever young zone) we played with a sweet little boy who has CP. Jonah wore himself out so I ended up caring him back to his room for he had zero energy left. A great way to use your energy I might add. I love seeing him happy, its medicine for a mommy's soul.

The pulmonary doctor came up around 7 to discuss the chest X-ray. He does indeed have acctalectasis...(collapsed area of the lung) He also has a tiny bit of fluid in his lungs as well. I can't help but feel sick about this. Dr Pfeffer mentioned that maybe it wouldn't be such a bad idea to have Jonah go back to Denver Children's hospital to look at his FEV1 counts and get a better idea of things. She asked my opinion and I told her I would go, but I would like for her to do another bronchoscopy on him first to see if that does anything. (Bronchoscopy, or bronch, "power washes" the lungs then the goop/secretions are suctioned out) this will require Jonah to be put back on a vent for the procedure. We both agreed that this would be a great first step. The doctor will look to see if she can get him in on Tuesday. If not I asked that we do it in late spring due to all of the respiratory crap that is still floating around up here.

So...that's the summery of day three.

day two

So like I mentioned in my earlier post, when I arrived at the hospital this morning, Jonah still had some crackles in his lungs. Crackle noises are not good. he has had 4 doses of his iv antibiotics so far and will continue to get 3 doses a day for the remainder of his stay.

Jonah went in for a chest X-ray this afternoon and I just had the nurse read me the results, while she was hooking up his night feeds. She said that compared to his last visit (x-ray) his right lung looks worse. (*cringe*) I guess as of now his middle right lobe is collapsed. kind of depressing... It puts his disease back into reality for me.

I'm so tired of being here and it's only been 48 hours. I have not left Jonahs side for more then 15 minutes all day. He is finally sleeping so I think I will check out as well. Thank you for your calls, emails and comments of support.

day one

Day one went really well. I love hospitalizations that start out this way. I will remain positive that it will finish this way as well.

We got up to the hospital around 10:45am. Unfortunately we had to wait 45 min until a room was cleared out, then cleaned. we got his room number and went up to his room. I was so excited to see a familiar face! We had a nurse who has taken care of Jonah many times during his last hospitalization. I love when the hospital pays attention to our personal paperwork. (patients who freequent the hospital are asked to fill out a freequent flier history card where I am able to request nurses) Jonah first has his iv placed then a few hours later he went and had his PICC line placed. Everything went smoothly! He was so awsome. The poor kid was NPO for 11 hours!

Morgan spent the day with Grandpa Doug who flew out for the weekend. He spoiled her rotten. She had a blast! I was so greatful to him for giving her the attention that she so much deservs. Later in the evening I had a few visitors. It was so wonderful. It really made a difference in how I felt being back up here. I really appreciate the support. It was also nice for Isaacs dad to be able to see the hospital that saved little Jonah's life. It was an over all great day!

I was a little disappointed to come in this morning and hear that he still had some crackles at the basis of his lungs. I hope that by day number 3 he will sound tons better.

Tomorrow is the big day...Dun Dun Dun

Tomorrow is the big day. I will be bringing Jonah up to the hospital around 11 for check in. Then the fun begins. I am having a harder time then I thought I would be having. This is not a new thing for us, I have plenty of time to plane things out but for whatever reason I am having a hard time. I think it's mostly because Jonah is older but he just doesn't understand. I have guilt. I don't sleep at the hospital because I feel that it's important that I see my little Mo everyday, oh yeah and get some real sleep. Wish us luck. I will write more tomorrow. Please keep your fingers crossed that the PICC line is placed with no problems!

Just got the Call

I just got the call from Jonah's Pulmo doctor that he will be admitted on Monday at 11am. Hopefully he will be able to get his PICC line placed earlier that morning. If not earlier, it will be placed before the day is over. Jonah's veins are mostly collapsed so placing a PICC is getting more and more difficult...You all remember the fiasco that went on in October! (the nurse cut the line)

Jonah goes to the hospital for CF clean outs. No, he does not have CF but his disease is cared for the same way. He does all that a CFer would do on a daily basis except he does not take enzymes. Bronchiectasis disease is strictly in his lungs...sadly, both of them. It's a 10 to 14 day treatment which consists of physical therapy, intravenous antibiotics and lots of boredom. The purpose is to rid the lungs of excessive infections and mucus. Ugh, I really hate having J up at the hospital. It makes for a super rough two weeks. Though it desperately needs to be done. This is Jonahs 4Th time having a "clean out." He is now on a new unit so we never have the nurses who have oh so many times nursed J back to a state where I could care for him at home. Jonah has spent so much time with those nurses, we consider a few of them family. October was our first visit on the "new" unit. The unit where they have to wear strange white hats, as well as the very scary yellow gown. (Jonah hates the yellow!) We are on a unit where most of the other children are suffering with Cystic Fibrosis.

Oh my. I guess I will need to start planning for little Morgan. I am pretty sure that the hospital is still not allowing Sib's due to the RSV factor. One more thing to make this a bit more stressful. I just have to keep reminding myself IT HAS TO BE DONE. Jonah is so much better for a few weeks after.

A Different Kind of Perfect

I have never read a book that has affected me the way this one has. A Different Kind of Perfect. It is a book made up of compelling stories that parents of special needs children have written. I am finding so much strength through these pages. I have related too, and have seen myself in EVERY story I have read thus far. Everyday I am recognizing my stregths. I have this book to thank for showing me that I am a good, strong, and loving mother.

LIFE IS NOT FAIR, GET USED TO IT

-Bill Gates



I find that I am constantly having to remind myself that life isn't fair. I think it should be fair. If life were fair we would not have war. We would not have discrimination, and we would not have a crazy mommy ranting and raving on her blog about the unfairness of life!

But hey, life isn't fair, so here I go!

I'm not trying to be a Debbie downer, rather an honest Anna. I am so confused by Jonah's illness. I know so much about it but still find myself knowing nothing. How can this be?
First off I have yet to find a child who is where Jonah is, illness wise. It seems that the people I have "met" who have Non CF Bronchiectasis are learning that they DO in fact have Cystic Fibrosis. I am feeling more and more alone and abandoned with this disease my son has. Where are the answers? Why can't it be clear cut? Why is my son who was just as sick as another little one doing so poor, and the other child doing so well and thriving? Why is Jonah still on oxygen after two years? I believe I was told he would need just a whiff for about 2 weeks and then he would be fine. Why won't his lungs improve? When will the antibiotics and steroids stop? I'm just at a point where I can no longer cry tears of sadness but tears of desperation.

The uncertainty that I feel day to day about Jonah's health is a hard cross to carry. I find that I go through waves of emotion. I am reminded daily that life is indeed not fair. Luckily I do have a sweet boy to remind me that it is all so worth it. Because of him I will continue to ask all of my questions... even if there is no one to answer them.

Happy Birthday Mo!

It had to happen, I know but oh how I wish she could stay small forever! She is my joy. Oh how I love my sweet Morgan Elizabeth. Happy Birthday Little star! This is the song I used to sing to her when she was that oh so small and happy baby. Now I have to go squeeze her and sing it to her! Yes, she will run away, but I know she loves that I still sing to her. Thank you for those of you who have sent Morgan birthday wishes! I think all her wishes are coming true. Oh how easy it is to grant wishes for a 4 year old.

Never forget who you are
Little star
Never forget how to dream
Butterfly

God gave a present to me
Made of flesh and bones
My life, my soul
You make my spirit whole

Never forget who you are
Little star
Shining brighter than all the stars in the sky
Never forget how to dream
Butterfly
Never forget where you come from
From love

You are a treasure to me
You are my star
You breathe new life
Into my broken heart

Never forget who you are
Little star
Never forget how to dream
Butterfly

May the angels protect you
And sadness forget you
Little star

There's no reason to weep
Lay your head down to sleep
Little star

May goodness surround you
My love I have found you
Little star

4 years ago tonight...

Tonight is the eve of my little Morgan's fourth birthday. As we were clearing the table from dinner my mind wondered back to the night I went into labor...that would be 4 yrs ago tonight. I remember this night so well because I did something crazy, something I don't recomend, somthing the mid wife told me to never ever do... I made a special little concaction. Why? I was what I thought in my mind "over due" (Morgan was born right on her due date mind you) plus I was so ready to meet my baby. I had waited so long. So I took a shot glas and poured 2 shots of 1/2 Castrol oil & 1/2 Pepsi This equaled one sick Jessica! 3 hours after I was in the hospital sadly I was in labor at the hospital for 15 more hours...