Sabrina (Stefan\'s sister)
We were nervous and anxious. The moment he was taken out and suctioned he cried a little bit. Because of the anticipated known conditions, there were about 15 doctors and nurses in the OR/Delivery room, some for Hannah, the majority for Samuel. He was immediately handed to the neonate group right there in the room who performed his assessments, to see how he would respond on his own, what his breathing effort was, his heart rate, his oxygenation, his motor and cry response, etc. Within a few minutes of being born his heart rate dropped to around 60. For a newborn, it should remain above 100 at least. They ended up having to put an endotracheal tube in to assist his breathing. He was stabilized and moved across the hospital to the Children\'s Hospital of the King\'s Daughters (CHKD).
Samuel has a number of issues that in isolation can be treated well, but unfortunately the combination of them makes things difficult. As an overall, they are calling the condition Pentalogy of Cantrell. He is currently in a special ventilator called a Jet Ventilator that keeps his lungs constantly inflated/open. He will remain on that ventilator until he can be \"upgraded\" to the standard ventilator. Eventually, he will be able to breathe on his own. We knew about the conditions he had but did not expect the breathing difficulties associated with the liver\'s location. That was an unwelcomed surprise, which has changed everything including what will now be a lengthy hospital stay and even more interventions. In order of importance:
- His lungs. Samuel\'s lungs are underdeveloped, especially his right one. It has to grow before he can breathe on his own. The doctors determined that the part of the liver that is not in the omphalocele is up by his heart, where it obviously should not be, taking up space in his right chest cavity where his lung should be. The liver has likely found its way up there through a diaphragmatic hernia. No surgery can be performed on him to move the liver and close the diaphragm until his lungs mature enough to at least get him off the Jet ventilator.
heart. Tetrology of Fallot. He has a hole between his ventricles. This means
his heart is pumping a combination of oxygenated and de-oxygenated
blood. His pulmonary artery (carries de-oxygenated blood from the heart
to the lungs) seems to be small as well, and his aorta is somehow also
affected as far as how it is attached to the heart. It could be months or years before that
surgery is performed, all depending on how he does. In spite of these
issues, his heart is beating well, although currently with assistance of pressor medications.
- His sternum. Since his
heart was originally outside the body, he is missing part of his sternum
(breast bone). We hope it can eventually be fixed, but until such
time, once he starts crawling and walking around, he\'ll need to wear a
protective vest since there is little bone protecting his chest cavity,
i.e. his heart.
- His omphalocele. Part of his liver and his
intestines are outside of his abdomen cavity covered by a thin layer of
skin. While it is the most visually noticeable problem, it is the least
dangerous. Nurses covered the omphalocele with an antibiotic ointment
and gauze and one which will help thicken the skin around it. It will take time for it to be pushed back inside, and
eventually surgically closed-in (months). But before any such surgery
can take place, either for his heart or his abdomen, Samuel has to grow
and get stronger and have healthy lungs.
Samuel remains on multiple medications, the levels changing as time go depending on his needs. He has a PICC line and an arterial line in place. The meds are primarily to maintain his blood pressure (Dopamine and Epinephrine). He is also on a Fentanyl drip for pain, he is being given Sodium Bicarb to combat the metabolic acidosis taking place; he is being sedated with Ativan (Lorazepam) and most recently he has actually been paralyzed to keep him from moving and creating an increase in oxygen demand (so he can\'t move his muscles anymore). He remains on the Jet ventilator that unlike a normal ventilator that takes actual breaths (inflates and deflates the lungs) it keeps constant pressure in the lungs...in other words the lungs remain constantly expanded as much as possible. As already mentioned, the pressing need right now is for his lungs to improve to a point where he can be moved from this Jet ventilator to a normal ventilator, and of course eventually off it. The oxygen saturation in his blood is a key indicator as to how his lungs are doing and it is constantly checked. Once the lungs improve, they can start talking about figuring out how to move the liver out of the chest cavity to allow the lungs to expand further.
This is the most recent update as of 5/15/11. We appreciate your prayers first and foremost as we present our petition to God to heal our boy. All we can do right now is be at his side as often as possible, read to him, pray for him, touch him gently, and hope daily for obvious signs of improvement.
Stefan & Hannah
- Robin Pinkham
- Elaine Azcarate (Cathy\'s mom)
- Onkeo, Kaori, Kai and Grandma Chikako
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