more fever

So, I'm sick. Right now, I'm sporting 101 fever and feel awful. I caught Gigi's illness. First I was freezing, then boiling hot, and now my throat is so sore that I can't bear to swallow.

Gigi finished her fever, but developed some sort of bacterial rash that required $75 ointment to conquer the infection.

Last night was terrible, Jules coughed for hours and hours on end and gagged so hard, his NG tube came out part-way. I didn't sleep a wink. The nurse came to get us at two am for help with Jules.

Our house looks like a cyclone hit it.

Scott had to leave work early to take gigi to the doctor for her rash because they wouldn't let me go to the pediatrics clinic with a fever and sore throat. Plus, I can't approach or touch jules, because it is too risky for him to get this.

So, scott is a single dad right now taking care of three sick family members and I'm tearing up as I type this because it just feels like too much. I know this is just life, but it feels so cruel not to be able to hold Jules and I just feel run-over. I feel guilty because my RA drugs make me immunosuppressed and when I don't get sleep for nights on end, it shouldn't surprise me that I caught Gigi's fever illness.

Back to bed.

Joy

good labs

Three sets of great labs! Best pco2 ever posted  -- a 36! Also recorded a 39 and 40 and all when he is enduring a cold. Maybe he is finally turning a corner with the lungs? We dearly hope so.

Gigi's fever ended monday morning, but she is still not quite up-to-snuff apparently.

Jules is wheezy and plodding along on prednisone and albuterol inhalations. He is vomiting only about four times a day instead of eleven, so we are  finally getting some sleep and back to only two loads of laundry a day instead of our high point of the weekend - SIX!

Also,this morning jules took his meds via his bottle instead of the NG tube for the first time. It was very exciting.

Joy

Hard weekend

Gigi still has a fever. the third full day of fever. If it is here in the morning, I am taking her to the doctor.

Jules has a cold and we are hovering over him, checking his temperature, checking his oxygen levels, watching and waiting. He threw up about eleven times today.

Keeping a sick gigi and jules content was impossible and the best we can say about today is that we survived it.

Goodnight,

Joy

Al Bundy Moment and some May Photos

From Beginning of May 2009

From Mother's Day 2009

From For a moment, nothing on Julian's face

Without a tube for a moment...

Last week, before his ng tube got pulled out twice on Friday, we changed his tube from his right side to his left side. Since he gets most of his food by bottle during the day we took the opportunity to get a few pictures without his equipment...

Rough night

So, we discovered gigi had a fever of 101 at six last night. We gave her tylenol and she started to feel better. Then, things went down hill. At eight, Gigi stepped on Julian's NG tube and it came out. Jules cried because it yanked the tape on his face.  He was very sad. very very sad.

When we tried to re-insert the NG tube, it did not go well. Jules started to bleed in his nose, vomited several times, and he choked during the insertion process and the tube went through his nose and out his mouth. Scott and I were both shaky and exhausted. I cried two times watching Jules suffer and scott only yelled at me once. It was quite nerve racking. 

Finally, we got Gigi to bed and Jules was asleep with a new NG tube. It was ten o'clock and we thought we could finally collapse in bed. We were wrong.

At eleven, Our night nurse accidentally pulled Julian's NG tube out AGAIN! We struggled to get it back in, scratching the back of his throat and causing more nose bleeding and much vomiting. On the fourth try, it finally went back in. 

At twelve thirty, Gigi woke up crying with her fever back. By the time we gave her more tylenol and made sure Jules okay, it was one in the morning and we had each changed shirts twice from the vomit and blood, our room was destroyed, and we were completely depleted. 

I stared at the ceiling bug-eyed on adrenaline and fell asleep around two in the morning.

Jules has been coughing a lot ever since and we are worried that we really hurt his throat with the NG tube.

Gigi has had a fever all day.

We are so wiped out.

Joy

clarification

We aren't sure which labs are to be believed. Jules is back home doing great and had his best eating day yet yesterday. The pulmonologists want to change his diuretic dose, but scott is unconvinced about that. Scott is waiting to hear back from the pulmonary team to discuss the issue. We are so pleased with his last labs and are going to repeat them weekly again for a while.
Joy

Bad labs

My morning was an emotional rollercoaster. Julian's labs were bad from monday. pco2 of 62. the pulmonary team called to tell me they were worried and were trying to figure out what to do.

I took jules to our pediatrician. He admitted us to the pediatric intensive cafe unit at swedish hospital for more testing. The new numbers were better, pco2 of 50. The pulmonary team called to tell us they wanted to switch julian's meds around, but we aren't really sure what to do. I will write more later.

Joy

Fever

Jules has a little fever of about 99.8 since last night at midnight. 

Mother's Day

I had a great day.
Scott and Gigi made me my favorite breakfast and scott took both Gigi and Jules to the park. I enjoyed an hour all by myself in our old house and it was SO nice.

This year, being a mother has been a seriously intense job, but so rewarding. I just took a video of Julian cracking himself up as he slept and had a dream about something that made him giggle. It was SO adorable. Hopefully, Scott will post it tomorrow.

Gigi and I went to the Fancy Nancy book tour yesterday with a friend from her school and she loved it. We also went to the welcome to new families party at her new school and that was very fun as well.

So, a great weekend actually.

Joy