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