February 15, 2005: Theresa didn't do as well yesterday on her ET-CPAP trial as we had hoped (she
had some trouble breathing throughout the entire 4 hours) so the doctors had her repeat the 4 hour trial again. Today,
she did much better, and rarely did her oxygen saturations go below 95%. Tomorrow they have orders to start her trial
before they arrive and will possibly extend it if all goes well.
Her feeding amount was increased to 16 cc/hr (around half of what it should be), they discontinued her lipids (the "fat"
she was receiving via IV) and lowered her TPN (other IV nutrition) amount. She has been urinating well having plenty
of bowel movements (yes, I'm still discussing her poop) so there definitely isn't any sort of bowel obstruction
or anything.
The physicians also ordered that her morphine and lasix (diuretic) be given orally, so that as they wean her IVs
they can plan on removing her central line (the IV that was surgically implanted in her chest after decannulation) later in
the week. Once this is removed and she is extubated, she will only have external leads and wires and we can hold her
often!
Gail, her occupational therapist, showed me several exercizes that I can do help her mouth muscles stay strong and prevent
her from developing "oral aversion" (which is when they hate anything touching their mouths since they have so many tubes
and irritations in their mouth while in the NICU). Basically, they consist of massaging around her face and mouth and
allowing her to suck on my finger (she seems to do well). These should help when she transitions to eating orally.
February 16, 2005: Another "quick" round by her doctors. She did well yesterday on her trial,
and was continuing to do well on the 4 hour one today, so they extended it to 8 hours. They also discontinued her TPN
(so she has nothing going into her IV except saline to keep it "open" just in case they have to use it) and are planning on
removing her central line on Friday. Her feeding amount was increased to 19 cc/hour (almost 2/3 of her requirement)
and will continue to be increased if she can tolerate the larger amount.
A pediatric surgeon fellow that we hadn't met yet (named Steve) came and recommended that her OG tube (the one in her
mouth that's venting the excess gas, bile, and gastric juices) be removed because it only holds open her valve in her
stomach leading to more reflux (the same theory as her surgeon had) so we'll see what her neonatologists decide to do about
this. There is a smaller amount of juices draining out so they also want to allow her stomach the chance to get
rid of this on its own.
Hopefully, tomorrow they will increase her feeds and her ET CPAP trial again.
February 17, 2005: Theresa has lost some more weight (probably due to the fact that breathing
on her own uses up some energy) and so they added powdered fortifier (called Enfacare) to her milk to increase the calories
and nutrients without increasing the overall volume. They are hoping that this will cause her to gain some weight.
Her attending physician suprised everyone when he extended her ET-CPAP trial to 16 hours today (instead of the expected
12)! She did very well on it. She is supposed to get her central line out tomorrow, so that's going to be something
to look forward to.
February 18, 2005: Since she did so well on her trial yesterday, and her doctor is going to be
on duty over the weekend, he decided to extend her trial today to 24 hours (instead of the expected 20), so this will put
her ahead of where we had hoped she be by the weekend. She'll continue the 24 hour trials over the weekend and so we'll
wait and see how things go, and then they may extubate her early next week! (fingers crossed and keep praying)
She lost more weight from yesterday, so they are going to increase her feeds tomorrow if she doesn't gain weight (they
cannot increase too much because of the fact that her milk goes into her intestines and you can't overload them or else they
will just "dump" the excess and not absorb the nutrients). If she doesn't gain any weight, or continues to lose, she
will go back to pressure support on her ventilator and stay intubated to help her from expending too much energy from breathing.
Her central line was removed today. Steve, the fellow, said it was a very "clean" job and he was able to do it
at the bedside without any extra incisions (thank you to the surgeons who put it in so perfectly). So, she no longer
has IVs, but all her blood is drawn from her heel now instead of the line. She was a trooper and didn't require any
additional pain medication (other than the morphine she already receives and a sugar water dipped pacifier). She was
even breathing normally during the whole thing and didn't need to have additional respiratory support either.
Now, if we can just get her to gain weight over the weekend!
February 19, 2005: EXTUBATION DAY!!!
Theresa had been on ET-CPAP trials for around 27 hours when the doctors held rounds today. Dr. Weissman surprised
everyone when he pronounced her ready to extubate (removing the ventilator). She had done so well on her trial, and
was continuing to do well that he didn't see the point in prolonging it. Tim and I were so shocked we basically didn't
say anything, just in case something should make him change his mind. About 10 minutes later, they pulled the ET tube
and put her on oxygen via nasal cannulas (short probes on a tube into her nose which provide oxygen) She is on about
1/8 Liter per minute (around 30% oxygen, but with the room air she gets around them and via her mouth it averages out to a
little less).
Now that she doesn't have a ventilator, she is much easier to hold, so Tim and I took turns holding her for a long time.
This is a day we had been hoping would happen for some time.
The doctors warn us that her airway may swell and she will require a breathing treatment or steroids, but so far that
hasn't happened, and they don't notice any of the early symptoms (like a squeak) which would indicate the need for it.
Also, if her trachea is weak, she may also need to have a tracheostomy, but again, no symptoms for it so far.
Her cry is somewhat raspy and hoarse, but that will change over time as her vocal cords heal and get used to working.
She has gained some weight, but not too much, so they are still watching her carefully and monitoring her on that.
