The Doctor Won't See You Now

Little Miss Dee came home from the hospital late last night. She's on Tamiflu and a few other lovely meds. She was readmitted to the hospital on Sunday for hypothermia (95 degrees) and treated there for the flu - isolation/gowns/gloves etc. The house is strewn with her gear and equipment. We are all wearing face masks (the boys, begrudgingly so) and fighting to stay healthy. Gavage set ups, stethoscopes and Lysol Wipes in every room.

I am certain the baby's first words will be either "cover your mouth" or "wash your hands".

This morning I took Cal for his allergy testing (as part of his asthma work-up) and there was a huge sign on the office door "Plese do not enter this office if you have any of the following symptoms: fever, cough, cold, headache, body ache, diarreah, vomiting." So there I am with 2 of the symptoms and wearing a face mask at the threshold of the office trying to signal to the receptionist. See Cal is OK and he has the appointment. He isn't symptomatic. I am. I don't have the appointment. I'm just the ride. I waited outside for the her to confer with the Doctor. No go. No appointment. He's been exposed to me. So we rescheduled for next week.

Here I was thinking I was being all paranoid about the baby by keeping Cal and Bucksquat out of school this week because of the flu. Cal was in the ER last Saturday morning with flu symptoms and there are at least 130 kids absent at his school. Who needs the extra exposure?

Apparently I am not the only paranoid in town.

Too True Tuesday

Essie The Accidental Mommie at theaccidentalmommy.blogspot.com asked First thing you would spend your lottery money on! Tell the truth! Spare us the crap about buying your kids a Carousel or paying off your parents mortgage. The REAL truth!

The truth - I am all about house and home and staying somewhat local. No exotic islands in the tropics for this girl. That said:

It is a 3 way toss up between Maine, Prince Edward Island and Vermont:

A farmhouse on Pleasant Bay in Addison, Maine or Lubec near Quoddy Light( pretty much anywhere Downeast - Washington County)


Or a seacoast farmhouse with green rolling hills down to the red clay beach on the ocean in Prince Edward Island, Canada


And a big ol farmhouse and acres of mixed land (woods/meadows/stream) in the Northeast Kingdom of Vermont.


The clincher would be which place had a better library and better WiFi reception....

Tune Up

Took the little one to the pediatricians yesterday for her NG tube slipping out again from spitting up over the weekend (lovely)- She had the tube changed Friday because she had dislodged it by sneezing and coughing and doing this funky little jackknife move that would make an Olympic diver proud. Anyhow - her temperature was 97 when she arrived and her respirations were 60. Should be in the 40’s. Later during the exam her respirations were 64 with retractions and her temp was 95.5. Not good. Not good at all. The doc made some calls and PICU was waiting for us to drive on over. We didn't need to stop at the desk - just head on up to intensive care. Soon. The doctor thought she should go back to the hospital for a little tune up. OK. Tune up.

Isn't a tune up something you do to a car???

They are trying to figure out what her deal is - why her little body won't grow as it should and why she doesn't seem to be able to regulate her systems. I'm glad she is at the large hospital - when we "checked in" on the floor, the nurses remembered her and thought she looked like she had gained weight...The child-life coordinator (like a concierge) even remembered which mobile she liked and got her favorite little Fisher-Price musical thingy set up on the crib. While the staff were finishing her vitals and admission I went in the bathroom and threw up. Ummmm.... that nausea and headache I'd had all day was clearly NOT from lack of sleep. Yup The Flu. Lovely. I notified staff and scored a mask and some ginger ale and sat way on the other side of the large room until they finished asking me the necessary admissions questions. Baby Dee had the room all to her self. She looked so tiny.

I headed home to the guest room and have been popping white Tylenol and red Ibuprophen like they were Good-n-Plenty candies and have slept mostly of the last 24 hours.

The Other Mother has been playing nurse to us all. Love that woman. Just love her.

When I got up to heat leftovers for dinner Cal thought I should do something with my hair and it might make me feel better. I took a look in the mirror and realized I was one scary looking Foster Mama and headed for the shower.


Cal is still banished to the family room downstairs (with 2 TVs - Guitar Hero, Video games and 3 couches ----- could someone banish me there for a few days...please????? He had flu symptoms Friday: runs/vomiting/fever 103.7 and whistling asthma noises...his pediatrician sent him to the ER Friday night. We arrived at the ER at 1am Saturday and were triaged about an hour and twenty minutes later. He had a hard time understanding that he may have been the sickest person in our house, he clearly was NOT the sickest person in the ER. He was so tired and so sick – he just lay on the linoleum floor in front of the vending machines and slept. I took photos of him laying there in his pajamas and face mask on the linoleum floor. At least laying on the cold floor brought his temp down. Somewhere around 3:30 they put us on a gurney in the hall near x-ray. At 4:00 he had a chest x-ray and was seen by a doctor at about 5:30. The doctor said he didn't have pneumonia and prescribe Tylenol and Ibuprophen for him - but had to go calculate the proper dose of Ibuprohen...Cal is 5' 3" and 150 pounds. Cal was maybe 2 inches shorter than the good doctor but weighed about 10 pounds more....It took the doctor 45 minutes to “calculate” Cal needed 3 Ibuprophen. Great. Now can we go???? Because there aint no Tylenol or Ibuprophen here..... HOLY SMOKES was I glad to get him home and back cozy on the couch....

Cal has court tomorrow. It's not looking good that he'll go home. When I told his Social Worker that Cal had an appointment with his therapist later in the day, after court, she said “good – because I think he’s gonna need it” GREAT. His Social Worker won't be there but the supervisor will. Cal spoke to Grandma tonight. Apparently, Cal's mostly absent/uninvolved bio Dad has flown up from a far-away-southern state to lend moral support. Cal is mad and does not want his support or to see him or talk to him.. I think he is afraid he will be sent to the far-away state to live with Bio Dad. He visited Bio Dad over the summer - flew down and spent a week. I think this was his first time spending time with him since he was real little. So he hung up with Gram and had a good cry in the Family Room. Poor kid.

So Cal is on the mend from the flu and now Bucksquat has a little cough going (not uncommon for him after playing soccer...but I am being an optimist) I can't go back to the hospital for a day or so after I am symptom free....In the meantime I know she is well cared for and Bio Mom is visiting her tonight with staffing support. I'm glad Baby Dee’s not alone.

Calendar Girl

Visiting Nurse today. Social worker this evening. Cardiologist appointment tomorrow morning. Pediatrician Friday morning. Early Intervention Friday late morning. Pediatirc Gastroenterologist Monday morning. Pulmonologist first week in Nov. Geneticist will call us to set appointment once results are in.

Hmmmmmm. I'm gonna need a bigger calendar.

BIONIC ROBO BABY MEETS THE MOMMIES

The hospital called yesterday morning and said they'd be able to discharge Baby Dee -if I could come in for one more feeding to learn how to do her regular and NG tube feedings. When I arrived she was downstairs in neurology having a sleep study (kinda like an EEG). Oh My Goodness!!! - she was hooked up to about a bazillion little wires attached to leads all over her head and face and other leads and different interesting wires taped to her nostrils...in additon to the usual leads and wiress taped to her chest. She also had wires between her toes and an oxygen monitor on her other foot. She looked like a bad science fiction movie version of BIONIC ROBO BABY. Seriously - and trying to reposition her for feeding without tangling her was almost like following a complicated knitting pattern.

The Good News is (and if you've read my blog long enough you know there is ALWAYS Good News) now that I've seen her all hooked up to the machinery - when you take the wires and monitors away she is just a lttle baby...and I do mean LITTLE. She is still a little over 6 pounds at three months. YIKES.

She has pretty labored breathing that changes to gasps with fairly loud stridor (squeaky wheezy gaspy whistle sound...) Dee has some vomiting skills that would make fraternity boys blush. The good news is with her gaspy loud breathing you at least know she is breathing!!!! When she's quiet you need to worry.

From there we proceded to finish off her feeeding through her naso gastric tube (NG tube. It's process for such a little peanut: checking for placement with stethoscope anda small syringe, feeding with a large syringe, venting gas, flushing with a small syringe and such. We do her medicine through the NG tube as well.

We made a discharge plan to return after 5pm to meet with DFS social worker and her team to go over final instructions. I left the hospital and ran a few errands before picking up Cal at school for therapy. OK I went to Babies R Us to find the exact little Fisher Price sound/light machine she had attached to her hospital crib so she would have familiar sounds.....Then home to start dinner until the sitter arrived for the boys.

I didn't leave the hospital until almost 8:30 because she had a few odd episodes - mottling of her skin then going cold and clammy...then her extremities blanched grey white (she's biracial so this localized color change was obvious) but would refill. After we calmed down she decided to impress us with some mucousy vomiting and turning purple and getting very hot and dry. NICE. Then it took 12 minutes to get two vials of blood for more genetic testing. OUCH. Finally we got to leave!!!

The Good News is now I've seen some of her more impressive quirks, I have a much better understanding of the wide array of medically confusing issues she can present in a short amount of time.

Well, we made it through the midnight, 3 and 6 am feedings...but I never did get my nap.....

Finally, Some Baby News

FINALLY!!!!! News from the hospital this afternoon - they are NOT discharging Baby Dee until Wednesday mid-day. I have been pacing and pacing and waiting and waiting!!!!! Wednesday will be a big meet up at the hospital with Social Workers, Supervisors and Division oF Families Nurses and The Other Mother and me....for training and planning....

They will discharge baby Dee to us with oxygen but will remove the NG tube prior to discharge. She still is not gaining weight and they are concerned overall about her ability to effectively feed and gain weight - she has trouble with 2 ounces every two hours...very sluggish.

That leaves me a day or so to get a few more things done that will be challenging with a little one and when I am sleep deprived. Maybe I should go take a nap.

Adoption - Everyone is Doing It

Tonight while I was cooking dinner Cal and Bucksquat were watching SpongeBob. Yes. Sponge Bob. Don't ask - we have free cable for a month.

Cal: I don't get it. How can a crab have a whale?
Bucksquat: Maybe he adopted.
Me: Who had a whale?
Cal: Mr. Crabs
Me: What?
Bucksquat: Mr. Crabs. His daughter is a whale but he's a crab
Me: Oh.
Cal: Yeah. I don't see how.
Bucksquat: Maybe adoption.
Cal Hmmn...
Me: Oh.

OK. I don't know which is stranger. The fact that they were discussing the genetic improbability of a crab birthing a whale, or that they found a way to explain it.