No News is Good News

Not much news, but like the saying goes no news is good news! We have established a routine which is always good in my book. I get up to the hospital around 8:00am just in time to talk to the Rt about how J sounded. The nurse come in to give morning meds(a job I gladly hand over) Then she sets up his feeding pump for morning feeds. He is usually finished around 9-930ish. Then I put Jonah in the stroller and attach his portable oxygen to the back and we head out...well out of the room. We fist ride the elevator to the first floor where there is always lots of other children who wave hello to him. (Jonah starts waving as soon as we pass the nurse station and doesn't stop till we get out side) We then head for the spinning door where I go around a few times just to hear Jonah laugh. We then walk by a few sets of multi colored benches that Jonah tries to grab for and I intentionally walk past just so he can get some stretching in. We then go over to this beautifully secluded area called "Angels Garden" That our special place. We have had beautiful bonding moments there that I will always hold close to my heart. I let Jonah feel the water for a few minutes and then we head towards the parking garage where we then turn around and walk the front entrance a bazillion times. When he starts trying to escape the stroller (never fails) we go inside to where the pretend fish who are hooked up to wires 'swim' we then walk down to the pharmacy to the far elevators and go up to the 4th floor where there is a bridges that connects PCMC to the University Hosp. We walk over the bridge and watch the train aka Trax, we watch the med students run across the street we watch the big big buses and then we turn around take the elevator down to the 3rd floor where J's room is. at 11:30 the RT come back in for treatment that's when I escape in hopes that his CPT vest will sing him to sleep. I hide in a little nook of a room across from his. Here I update my blog, check Fb and of course do lots and lots of homework. I usually only get an hour of this 'free'time so I work fast...otherwise I will be up all night finishing stuff. well that's about it, sorry I don't have more to write about...still waiting for the dr to look at both CT 's

Update! Update! Read all about it!

It's been a rough start! But I am finally feeling better about things. Keep praying for Jman and sending positive thoughts my way. I can't even tell you how much they really do help. yesterday Jonah's lips started turning blue. I was glad that it happened here so the nurse could see what I have seen on a daily basis. (however this has not occurred for a little while now) She wrote a not on Js acart and when his pulmonary doc came in she went over some things with me. So, in some twisted way its a good sign that his lips are turning blue...follow me, Jonah comes here for a 'clean out' during this time he his pumped full of antibiotics that kill bacteria that is growing in his lungs. He has 3-5 treatments a day, each one lasting about an hour. He then gets his normal respiratory treatments (and by normal I mean everything we do at home) the combo of the two; the antibiotics and the RT starts moving mucus around. Jonah doesn't cough so it cant really clear like it should so it floats and starts clinging to what ever it can and sometimes it gets stuck in certain places until he can 'move it up, and clear it.' SO its good because we know that this treatment IS working for Jonah.

I am still waiting for the Dr to confirm some things but it looks like his lung disease has not increased! I will write more when I know more. His Dr seems to be pretty happy about the way it sounded in the little key note that the radiologist had written in the computer. She will view the CT today and look at both (the first one from Denver) and compare. I'm very anxious to hear.

Isaac turned 33! I can't believe he is well...OLD!I reminded him a couple time of how lucky he was to be married to a cute twenty something year old.

I am trying to stay positive but living in a hospital, missing family time, missing Morgan and her oh so cuteness is very wearing. I haven't been myself but I am trying so hard to be a pleasant person. This life style is wearing and frustrating. I asked J's Dr to estimate how much longer he will be doing clean outs for and her answer didn't surprise me, "years!" she said.

She tries not to cry as the tears fill her eyes

He's Not Just anyone, He's my son...A song that I constantly revert to when I feel like all of this is just to unbearable. I thought this hospitalization would be different...better...nope.

Jonah was NPO(no food or liquids)for 8 hours yesterday. We were asked to be up at the hospital at 1:00pm. I hurried and picked up Mo from school, and headed over to a friends house so Morgan could play until Isaac was off work and able to pick her up. Jonah and I drove up to the hospital and as we got closer I let off a little on the gas pedal and slowly said good bye to the freedom of home. We went to the little admit station and got all checked in. The admitter gave us a room number, a room number I knew was not on the unit Jonah is usually on. Sure enough I get to the pod where he is supposed to be and we are on a new unit. This saddened me greatly! I have a friendship with many of the nurses on the infant unit, now I know no one. I will miss them. Thank goodness for Face Book. I introduced Jonah and my self to the nurse and she says "OK Jonah stand up up like a big boy and walk with me." she obviously doesn't work with babies. When we go into his room there is a twin size bed...umm I said , he needs a crib he's only 22 months. I had to ask why he was on this medical unit instead of the infant and the response was "all CFers are on this unit." J does not have Cystic Fibrosis. What ever this is where they wanted him I could deal even though It's not what I wanted. Hold on, theres more. So the crib rolls in the twin bed rolls out. Then more drama about him being admitted & no one knew he was coming except for Js Dr ...just a bunch of BS you would only get if your child was starving and screaming and all of that. So moving on... In order to have a Picc Line placed you need an IV first so that they can inject the risen solution to see where the veins are to your heart. Seven times he was poked SEVEN times! Finally they found a decent vien. he went down and had his line placed. Finally at 9:30 he collapsed and fell asleep. A positive thing about being on this floor with a CF clean out is they do not wake him every 4 hours for vitals. Just one time at shift change. Nice. Through the night Jonahs Alarm kept going off. (I swear when I sleep here I don't sleep I lay down) His heart rate kept falling into the low 50s.
Today I was determined to have a good day with Jonah! It started a little shaky for him. More people picking on him...sad. I ran home to read some stories with Morgan and grab some brunch. When I got up here the nurse has said how well he laid in his crib and just watched the people pass in the hall. (darn i was hoping he was napping) She then said she needed to do a dressing change on his picc and G tube.(same nurse as yesterday) She asked for my help to hold his arm straight so she could remove the bandage. Jonah does not like to be held down! It took all of my upper body strength to hold him down then she says "sh*&, I cut the wire" SHE CUT THE FREAKING PICC LINE! Blood is pumping out all over his bed he is screaming I am in shock that this is really happening and then she leaves. She went out to get the charge nurse, but still she leaves me..(Wait she did clamp it before she left but the clamp was not holding it all in)I am holding him down practically laying on him and she returns with no help...finally a good 10 min later a team of people come in and one starts giving me options.(I hate options, I'm a middle child)At this point I had to leave the room. So I did and sat out on the couch in the family area and held back tears though a few escaped. Now it is 4:00pm he has not taken a nap and every time I almost have him sleeping someone needs to Listen to him or take his blood pressure and right now RT (respiratory is here shaking him up with some CPT while he is screaming, she is singing Twinkle twinkle and I am hiding in the corner so he doesn't spy me. Life is hard, especially for this precious kiddo.
Please keep Jonah in your prayers.
XOXO

Monday, Monday so Good to Me

It's been over a week I guess it is time for a new post. Before I start I just wanna give props to the Italian who created the cannoli! MMM It's my favorite desert ever. It can turn any frown upside down.
The wonderful Dr Pfeffer called me last week to let me know that Jonah will be admitted on the 24Th. He will be there for a bit, 10-14 days. He has been running a fever for over a week and just today I took his temp and was surprised to see it at 99.8 In other what the heck is she doing NOW news... I have the opportunity to meet with a man who is a self proclaimed healer. You might read this and think I'm a kook but I'm desperate. My plate is full, the grass is looking greener on the other side, the cup is half empty, and so on. So keep the judgments to a minimum.

Morgan started at her little preschool today. It is so cute! I love her teacher. We went in last Friday to meet her and the other classroom assistants. we filled out some paperwork and were able to ask questions. This morning I walked her over and as soon as we crossed the street she was..."sick." I wasn't going to let her play this game so I picked her up, squeezed her tight and carried her into the building. Of course she through a fit, but her teacher came over and invited Morgan to be the breakfast helper, and off she went. As I walked home I had a million thoughts run through my head, do they remember she is a vegetarian? Will they make sure she doesn't eat and red dye #40? Will they look in her cubby to see that she has a change of clothes if she has an accident? Should I call and remind them?

OMGOSH! I have turned into one of those moms!

I gathered myself together and made myself promise not to call the preschool. The three hours went by fast and I went to pick her up. I walked into her class to see her sitting at the table with her neighbor hood friend eating a bean burrito while those around her ate chicken nuggets. She was in the same clothes I dressed her in this morning so no potty accident had occurred. AHHH, what a sigh of relief, the teachers have common sence!

Prednisone hearts my son!

So Jonah is sick once again. He has been since last week. I called the doctor Monday, after Jonahs sats were droping into the 80's. His work of breathing was increasing and I started to kind of freak out. I was having flashbacks of how this usually ends up... in the ER!
Jonahs doctor told me to start him back on steroids (pred) so I did, this time welcoming the stuff. Anything to keep him out of the hospital. I set up a time on Thursday to have her check him and listen to him. She decided to scratch oour previus plan and have him admitted in a couple weeks. Bummer. Her reasoning was that Jonah has been placed on steroids 2x since he was weaned off. She is concerned that he has needed them and we have not even hit respiratory season yet. She is a great doctor so I will try not to second guess her. It is just so hard for us as a family to have Jonah admitted. Though we have done this enough to have a fine scahedual, it is a very stressful time.

Bye Bye Binky!

Morgan said good by to her best friend of 3 years. Bye bye Binky! We had a small good bye party for the occasion. My friend's son (who is a year younger) said good bye to his Binky's so the pressure was on. I asked Morgan if she wanted to go up to the hospital and give her Bink's to the babies. There was a slight pause then she asked me if she could just give the Binky's to the astronauts. Isaac and I looked at each other and kind of laughed. Then it hit me hey, yeah we could. We would just tie the Bink's to the end of balloons. viala! It worked. So today was the day... We walked across the street and let go of 6 balloons. When the balloons left the ground Morgan fell into complete hysterics! I wasn't sure how she was going to react, but I am not surprised that this was the result. After a little walk and a run through an empty parking lot with flying grasshoppers, she seemed to be much better. The astronaut cake that was waiting for her when she got home helped too.

I put Morgan to bed about 20 minutes ago and she has not cried yet. This is a good sign. I know she can do this. However I am warning everyone DO NOT BRING UP HER BINK'S....EVER!!! Thank you. And to moms all across the world...Don't wait till they're 3.5 before taking the Bink away. It is so hard and too much work!

And the Beat Goes On

I feel so good today. I have noticed that I go through cycles, most days I am forced to put on a happy face and I go through the motions of the day but still can't help but watch the clock and wait for it to be bed time. For bed time means I can sit on the couch or in front of the computer and disappear into la la land...sad...pathetic...not who I want to be. Being locked up in the house while Morgan had chicken pox has been rougher then I would have thought. I think that has a lot to do with my "Frumpy" self.

Today has been different. First off I feel so refreshed. Isaac has been so wonderful about getting up with Jonah through the night for the past week. It is so amazing to be a ble to wake up in the morning and have to ask your self if you really slept through the whole night. The second thing that goes through my head is to check on Jonah to make sure he's still breathing. Anyways I am getting geared up to start my September.

So much is going on this September, so many changes in our lives. I will be going back to school on Wednesday. Well kinda... It's over the Internet this semester, but still I am looking forward to it. I had big plans to this last summer but it never happened. Wednesday is the big day. I will be majoring in Family & child studies in hope to become a child life specialist one day.

In other fab news... Jonah had a doctor appointment with his lung doctor and she said he did sound better then he did last month so she will hold off on admitting him if that was okay with me...Well it actually works out nicely if he does not have to go in at all. So she will set up a CT scan in October to see what the lungs are doing. If he has further lung damage compared to the first CT scan she will admit him in October. I guess we will wait and see what happens.

Thank you for your out poor of prayers. I am touched by each and everyone. You wouldn't believe the miracles that we have seen. Good thing I'm writing that book huh?

synagis...oh the power you have over me

I have been dealing with so much political crap myself. I am dealing with insurance and its a full time job! I am trying to stay positive and make sure the company that wants to deny my child from getting appropriate vaccinations understands what he has been through. I call Molina health care every Monday so that they remember that I am the one who wont let up! Its super frustrating and yesterday I was told that it's the states decision. That's crap! Perhaps today i will gather all of Jonahs "sick" hooked up on life support pictures and send them to the state. What right does the state have to deny my son of a medication that he needs because he was born at a decent weight? It makes no sense. I constantly remind the person on the other end of the telephone how much money could have been saved this year if he only got the medication last year. I will not give up but I do not support universal health care! I am with Jonah 24/7 I think I know what is best for him. If these people would just listen I am making a lot of sense. This is a sick child who needs to be protected through the respiratory season! The state would rather protect their pocket books. It's sick and it's sad and Im tired of the silly back and forth games that are being played.

our house

So I have started writing my first book. I know, sounds crazy but I have a story to tell and hopefully inspire. Inspire other parents who have to deal with the pain and loss felt while trying to keep the up the home front and become a child's number one caregiver. It's the hardest thing I have ever been asked to do. I look back now and am surprised at my strength and willingness to follow orders...(I'm a little stubborn) I am thankful for the support that friends, family and medical teams have given us. I know Jonah is not healthy, but he is fighting and holding his own pretty well. I often try to put myself in his shoes...Could I endure all of this? He is doing great this week and I am so happy to see him growing in length and in development.

Morgan will be starting the head start program (preschool) the second week of September. She is not to thrilled about it, but I think it will be very good for her. She struggles with trying new things and leaving my side. Yesterday I took her into the doctors to learn she has a few chicken pox. Yes she was immunized but she caught the virus somewhere. Today she has gained another four spots. She does not scratch them, rather avoids them telling me that they hurt her. Poor doll.

Isaac is still working hard to support the family. He is getting bored with his job and most days irritated with the politics of the "new Company" However our flight benefits will start up next month and I am really excited about that!

Steve's Organ Donation Story - The Circle of Life

Hope you don't mind Steve! ;)