Wednesday, February 18, 2009


On Monday Deedee was a bit fussy and looked as if she were in pain. Early in Tuesday's morning she started desating out of the blue, being at 90-91. We did her routine therapy with some extra coughings on the sides to clear her up as when checking with stetoscope she sounded chunky. She then stay between 96-97 for the rest of the morning, but her heart rate was high (195-210) which made us think something was coming up.

In the afternoon I decided to change her mask to the prongs, figuring her teeth may be hurting because of the mask pressure, and therefore the high heart rate. Deedee started dropping and reached the 40's. We did inmediate suction, ambu and coughing. She would only stay in the 60's so we included 3 liters of oxygen, which helped her reach 92. Afterwards she hovered between an oxigenation of 88-92 and the heart rate kept on 200-210. We figured that she may have had a partial lung colapse, so we prepared everything and called 911. Fifteen minutes later, we were at the hospital.

As usual, ER checked x-ray and test for RSV and flu, plus blood tests. The X-ray showed almost the same as when she was dispatched in January, only with a bit more atelestasia on the right side as we expected. The pulse-ox showed 97/180 and again they were making plans to to release us when the numbers began to plummet again. Since she was not sustaining oxygenation with bipap, she had to be intubated and sent to PICU around 5pm.

Again, symptoms began at night. She began to develop a high fever around 8pm, at 102.3 of temperature. The fever would not give in for the rest of the night, until today in the morning. So, during the night Deedee was taking antibiotics, tylenol, IV and her food. The nurse and me were changing diverse ice packs that we were putting all over her as the fever would not go away (under legs, under arms, in back and face). When suctioning, the secretions were nasty green-brown. No doubt she has an infection, now we need to know what she has exactly... Baby was hurting the whole night, opening and closing her eyes, being restless and evidently in pain. It was a long night, as she looked weary, very pale, very tired. Her eyes just seemed to scream "make it all stop, please!". It was VERY unnerving and heart-breaking as there is only so much you can actually do to try easing her pain and the poking/probing of the staff is non-stop (a much hated necessity). At least the RT and the nurse last night were exceptional. I wish that was the team for the rest of the stay. They do everything they should do.

Today in the morning they took her X-ray and the temperature had lowered to 98.8. By midday it was 98.2. So far so good. No word yet on what kind of illness/infection she has, although it should not be RSV (she was negative to it). She was still taking Tylenol and antibiotics, and morphine. I had a minor "encounter"with the RT but then she confirmed what I told her with Weaver and problem solved. In the afternoon the morphine was higher and baby finally got to rest a bit more, letting go of the hurtful expression that she had in her face. Although she did open her eyes to watch bits of Batman Brave & Bold. That's my girl!

Daddy arrived at late afternoon to take care of tonight's night shift. We are crossing fingers to see if after 24 hours of antibiotics the infection begins to vanish. We are hoping Deedee can get through this quickly enough. Main problem has been her looking so tired. She needs more energy. Ironically enough, Daddy had finally got the carnitine on Monday. The "Carnitine experiment" was abruptly interrupted by the sickness emergency. Cést la vie!

Now it seems that the pattern will be a sudden drop, a trip to ER and then a stay when an illness finally shows during the first night. Interesting... I guess our Deeva wants to make sure she is in the right place to get all the attention she needs. Annoying? Yes. But looking at it with a "positive"view, at least she is in a place where action can be taken if things go beyond our knowledge or control. As long as we are in permanent watch and in control, no problem. We'll deal with it. The unnerving thing is convincing our beloved Deeva to keep the fight. We understand that SMA is a horrible thing, and the daily tortures she endures simply to breathe are not to be taken lightly... We wonder when will she get really tired. I guess it is a question with so many answers and opinions... We can only trust that her happy days outweight her sad days, and that what we show her of life makes it worth living. We all have to trust this has a purpose, even if sometimes it seems puzzling, unfair and questionable.

Fight, baby. You must fight and keep on faith and belief. A cure is near. You must try with all your will to simply be there when it finally is discovered. It is the only thing you must do: Trust in God and Will Yourself to Live.



Monica English said...

Oh, you guys. I'm so, so sorry you're back at the hospital with very sick little Deeva. My heart just breaks for you, the back and forth to the hospital is SO hard. You will all be in my prayers.

Maria said...

My prayers are with her, too. I have presented her cause at church, she will be fine. She is a fighter...