Jack Today: For the first time since his Norwood (first open heart surgery) and since diaphragm surgery, everyone can see the clearness in his lower left lung! It’s still somewhat hazy, but it appeared open enough for the doctor to say, “time to start weaning!” (him off oxygen). Doctors say for a regular baby the x-ray looks “good “and in Jack’s case it looks “great!” So he is already on 3L of oxygen! That means he went from cpap to high flow 6L of oxygen to 3L of oxygen all in one morning! At 2L of oxygen he’ll be on a regular oxygen cannula. Ideally, Jack should gain 30 grams a day. He did gain weight again, it was only 10 grams, but we’re all excited he gained weight two days in a row (rather than losing it!) for the first time in a long time! The medical staff believes he can also have his swallow studies tomorrow. So please pray he passes that so he can begin eating orally again. He sure loved his bottle of milk before the Norwood and they always cut him off early for fear he’d aspirate and left him slightly hungry. It would be great if he can now drink as much as he’d like and even better if Robyn could move on to nursing him. Jack is still receiving the archaic machine, but now only every 6 hours now instead of 4. The doctors wanted to stop it altogether, but the respiratory therapist wants to keep it going to make sure the lung stays open. His lung could still close, so they have to make him cry every hour. We want lungs to stay open, continue clearing, keep gaining weight, and pass that swallow study tomorrow! P.S. For those of you new to following Jack or unaware of HLHS and its serious nature: Jack’s NICU visit is unfortunately not like the NICU visit experienced more commonly by most patients. His parents struggle with more than the typical NICU stressors. Jack will need at least three open-heart surgeries in his life. One at birth, another at 3-6 months and another at 3 years in order to live. It’s likely he may need a heart transplant to live past his 20s or 30s. This is the most lethal and complex heart defect one could have that can never be permanently fixed. So while Jack’s parents are in the NICU, of course praying he gets well so they can take him home, their fear doesn’t end when the NICU ends. Robyn lives/will live in daily fear that she will outlive her child, even after she takes him home. Fortunately, HLHS is heavily researched in medical science and it has come incredibly far in the last 20-30 years. 30 years ago doctors would only offer compassionate care knowing the baby would die. In another 20 years options may have drastically improved. We anticipate Jack will be traveling the world with his wife and three kids well into old age.
Posted on: Wed, 16 Apr 2014 17:56:19 +0000
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