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18 APR 2000
Today, she was breathing over her vent. She had been taken off this morning but did not tolerate it well, so she was re-intubated. She was crying, we could not hear her because the vent goes between the vocal chords. We knew if we could only pick her up she would not cry, but the vent prevented that as well. We were not allowed to hold her. We were allowed to put our hands on her. She will be getting 2 doses of steroids. This is supposed to help her lungs, but then again so was the surgery. Lord keep our minds stayed on you, so we are not swayed by what we see.
19 APR 2000
Today we spoke with the doctor. He said, her liver is fine, her spleen is fine, Praise the Lord! They will attempt tp extubate her tonihgt or tomorrow. They are taking a picture of her brain tonight, to see why her head is so big, they don't know because every single test that they have run has come back negative, Praise the Lord!
There is a slight chance that she may be deaf, we do not think so, but she will be tested before she goes home. She is doing well today, she was very agitated earlier but seems to be calming down.
This is a picture of her taken on 5 April, we hope to see her like this again soon!
20 APR 2000
Today Rebecca was resting, because she was under sedation. They are trying to keep her calm so they can take her off the vent. They will be removing the central line today. She gets agitated and yanks on it, so the nurses are having to change the dressing on it daily. Everyone there is waiting for the word from the doctor to take out the vent, they are very confident. The nurse today said she is sure that Rebecca is not deaf, so Praise the Lord. We will go back this evening to check on her. Her nurse tells us that she needs to be held, we are very willing to do this.
21 APR 2000
Hello friends. Rebecca had a very bad day today. Her lungs were flooded with fluid, she cannot cough with the vent in so she gets agitated, and stopped breathing, her heart rate dropped to 40. They have decided to put her back on lasix to dry the fluid out. It seems this surgery did not work, perhaps it did, very hard to tell. We shall wait and watch and of course, pray. Tonight she is resting quietly, we put a small pillow over her and tucked some straps under her, it seemed to work, the nurse promised to leave it that way. Thank you for your continued prayer.
22 APR 2000
Rebecca is doing a little better today, she started her 5th week today. She still has fluid in her lungs, but it clearer and not pink like before, also when she was suctioned she was not so agitated. I bent over her and placed my arms around her on either side of her, and spoke to her, she looked me in the eyes and calmed down immediately. She looks so old in her eyes,"I will repay you the years the locusts have eaten- the great locust and the young locust, the other locusts and the locust swarm- my great army that I have sent among you. You will have plenty to eat, until you are full, and you will praise the name of the Lord your God, who has worked wonders for you." Joel 2: 25, 26.
23 APR 2000
Well, wouldn't you know, on Resurection Sunday of all days, after church we went to see Rebecca, they asked us to wait outside for a few moments, she has been extubated, and is off the vent! It is just after midnite now so she has been breathing on her own for 11 hours now. I just gotta Praise the Lord! We can hear her cry now, it sounds like a raspy breathing sound, the vent sort of hurts the vocal chords. We know they will get better in a few days and in time she will be using them to praise the Lord as well.
24 APR 2000
This is definitely a Monday, Rebecca was intubated again today. She had 23 hours off. Her oxygen was ok, she was just working too hard to breathe. The pulmonary band apparently is too loose and will need to be done again, this requires surgery again. The holes in her heart are causing her lungs to stay filled with fluid. Tonight we went back for a doctor conference, Rebecca was pushing fluid back up the breathing tube, she needs surgery or healing. Everything else is fine with her. Only her heart and lungs, even her lungs are fine, they just keep filling with fluid because of the heart. We will meet with the cardiologist tomorrow. God Bless.
25&26 APR 2000
We met with Dr. Leigh and the cardiologist on the 26th(he was not available until today), in the next 2 days Rebecca will go back to Atlanta for a cath, the will thread a catheter through the femoral artery up into the heart, inject dyes and take a look, the pulmonary band does not seem to be working properly, it is tight enough according to a heart echo today. They will decide what to do then, either increase diuretics to keep her lungs clear, or open heart surgery. There is some concern about that since she is so small, ideally she should be around 6 months old for this. She is 34 days old now. Her oldest sister Rachel came to visit today, Rebecca kept her eyes on her the whole time.
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1244 Ridge Road
Lawrenceville GA 30043-1244
770-338-7379