12/08/2009

Today was a good day. I was able to spend 5-6 hours with Emerson and 5 at the hospital with Chi AND I was able to spend a few hours with my husband after Emerson went to bed. John took a 1-2 hour lunch break and spent some time with the Chi before coming home to have a Daddy date night with Emma. I was pleasantly surprised to see Malachi resting COMFORTABLY when I arrived to his bed this afternoon. There were definitely moments where he would have been SCREAMING if his endotracheal tube was out, but it's nice for his mommy to see moments of peace. His nose is definitely requiring less prn suctioning (they are suctioned out REALLY good every three hours and then just on an as needed basis in-between).

Speaking of ET tubes, the doctors are considering extubation and taking him off the ventilator...(Drum roll please...) TOMORROW! We know that the stents are keeping his nasal passages open though. Yesterday during one of his feeds his reflux kicked into high gear and there was a disgusting episode of emesis (aka upchuck) that spewed out through his mouth AND both nostrils--a picture that stuck with me the rest of the night. So, we'll see how it goes. I would hate for him to have to be re-intubated after the ET tube comes out. BUT, I am very excited to see what our little man looks like without all that tape and stuff on his face. I think he will be MUCH more comfortable once he gets used to it. hopefully we'll have pics to come.

Prayer Requests:
*Knowing the right questions to ask and things to bring up at the care conference.
*Extubation goes smoothly, so that he does not have to be re-intubated.
*Further assessments and evaluations go as smoothly as possibly.
*Nothing gets overlooked during this hospital stay.
*Weather stays decent enough so we can safely get to the hospital and back.
*Cardiology can figure out Malachi's heart rhythm situation.

Current list of problems as listed in his chart (for record keeping purposes):
CHARGE (multiple congenital abnormalities as individually listed problems below)
Suspected chromosomal anomaly
Bilateral choanal atresia
Coloboma of the optic disk
Respiratory failure (under control)
Undescended testes
Congenital heart disease
History of aortic atresia
Atrial septal defect/Ventricular septal defect
Hypertension (resolved)
Cutis aplasia (healing on its own)
History of tracheoesophageal fistula (repaired)
Bradycardia
Suspected DiGeorge Syndrome
Oxygen desturations
Suspected seizures
Leukopenia
Right lagophthalmos
Hypocalcemia
Gastroesophageal reflux

Further testing to be done:
Ear x-rays, brain MRI, GI workup, hematology/immune system work up, swallow study, sleep study.

Possible operations:
Pacemaker placement, G-tube (w/ Nissen fundoplication)