"Never a dull moment" still describes our daily non-routines. One major mishap occurred on Saturday night about a week and a half ago. The port at the end of Peter's J-tube started leaking. (The J-tube is the inner feeding tube that goes into his jejunum or small intestine; the outer G-tube goes into his stomach. These tubes come out about 18 and 8 inches from his body, respectively. The port is a capped opening at the end of the tube used for connecting the food pump and administering medicines.) So the nurse discovered that as Peter was sleeping, about two hours' worth of feeding had leaked into his bed and never reached him at all. We tried to figure out how to fix it, but to no avail. In the end we wrapped the port in a disposable diaper and told the nurse to feed Peter a bottle if he woke up hungry.
The next day we called the hospital and when the doctor ascertained that Peter was eating well by mouth, we were given permission to stop tube feeding and feed him all his food by bottle. We were given a minimum intake guideline to prevent dehydration and a daily target for healthy weight gain. The nurses keep meticulous track of these things. So Peter has been getting all his food by mouth for eleven days now. It was with ill-disguised glee that we packed up his food pump and remaining feeding bags and put them in a downstairs closet.
This past Monday was our maiden voyage taking Peter back to the hospital for his first check-up. Daniel stayed home with Grandma, who was up for a visit. Peter coped very well with the new experience of car travel. A friend lent us a double stroller to transport Peter and all his appurtenances around the hospital. At the end of the day, Peter was taken off one medication (Zantac), the despised J-tube was removed entirely (a remarkably easy procedure), and ... drum roll please ... Peter is now getting 25% my milk in his food mixture! (The secret recipe also contains 25% skimmed donor breast milk and 50% Portagen non-fat formula.) We will return in another week for a checkup to make sure Peter's body is coping with the fat as it should. Please pray that this will be so. For one thing, we do not want a recurrence of the chylothorax. Moreover, the long-chain triglycerides (fats) that Peter has been unable to take up to now are very important for growth and development in infants.
Wednesday, September 30, 2009
Sunday, September 13, 2009
Never a dull moment
Hi everyone,
The four of us are beginning to settle in at home now. It took a couple of days for Peter to adjust to the new sights and sounds around the house, but he seems to enjoy the 24-hour access as much as we do!
One thing Peter has had to adjust to is temperature fluctuation. He is quite hot-natured and often likes to wear just a diaper with the air conditioning cranked up. A cool washcloth hat also helps sometimes.
We are also learning how to keep a "cool head" when all the alarms on Peter's machines go off at once. Example: Peter has a dirty diaper, which makes him very angry. He cries. The ventilator starts beeping because it senses the high pressure of his breaths. He kicks his feet, and the oxygen sensor on his foot also starts beeping frantically because the movement gives a false reading. The crying leads to a surfeit of phlegm, so we turn on the suction pump (sounds like a quiet air compressor) to suction his trach while one of us is dealing with the diaper. This is usually the point when the phone rings and the food pump beeps because it has run out of milk.
Speaking of food...Peter's bottle feeding has been improving exponentially. We haven't weighed him since he was discharged but we're sure he's gaining and growing. He's now working on a second chin--no mean feat when you're on a fat-free diet. He gets tube feeding for 16 hours a day, bottle feeding whenever he's hungry.
People have asked us about the nursing care. The nurses come to our house in three 8-hour shifts every day, at least for this first month. One week in, it has been quite a study in personalities. It is amazing how the nursing profession reaches across generations and walks of life. We are grateful for their medical expertise, enthusiasm and experience.
The four of us are beginning to settle in at home now. It took a couple of days for Peter to adjust to the new sights and sounds around the house, but he seems to enjoy the 24-hour access as much as we do!
One thing Peter has had to adjust to is temperature fluctuation. He is quite hot-natured and often likes to wear just a diaper with the air conditioning cranked up. A cool washcloth hat also helps sometimes.
We are also learning how to keep a "cool head" when all the alarms on Peter's machines go off at once. Example: Peter has a dirty diaper, which makes him very angry. He cries. The ventilator starts beeping because it senses the high pressure of his breaths. He kicks his feet, and the oxygen sensor on his foot also starts beeping frantically because the movement gives a false reading. The crying leads to a surfeit of phlegm, so we turn on the suction pump (sounds like a quiet air compressor) to suction his trach while one of us is dealing with the diaper. This is usually the point when the phone rings and the food pump beeps because it has run out of milk.
Speaking of food...Peter's bottle feeding has been improving exponentially. We haven't weighed him since he was discharged but we're sure he's gaining and growing. He's now working on a second chin--no mean feat when you're on a fat-free diet. He gets tube feeding for 16 hours a day, bottle feeding whenever he's hungry.
People have asked us about the nursing care. The nurses come to our house in three 8-hour shifts every day, at least for this first month. One week in, it has been quite a study in personalities. It is amazing how the nursing profession reaches across generations and walks of life. We are grateful for their medical expertise, enthusiasm and experience.
Tuesday, September 8, 2009
Home!
Psalm 126
When the Lord brought back the captives to Zion,
We were like men who dreamed.
Our mouths were filled with laughter,
our tongues with songs of joy.
Then it was said among the nations,
"The Lord has done great things for them."
The Lord has done great things for us,
and we are filled with joy.
Restore our fortunes, O Lord,
like streams in the Negev.
Those who sow in tears
will reap with songs of joy.
He who goes out weeping,
carrying seed to sow,
will return with songs of joy,
carrying sheaves with him.
This was the psalm that God used to keep me going through all these months. Praise be to Him! Here are some photos from this eventful day.
Monday, September 7, 2009
Clear for takeoff
Hi everyone,
Peter is all set to be discharged tomorrow! The past week has been very busy. Michel and I have each spent a night at the hospital learning Peter's night routines (thank goodness, he is a good sleeper). We have had five hours of training on his machines--ventilator, oxygen monitor, suction pump, food pump. We have learned how to administer his medications. We have rearranged the living room to accommodate his crib, equipment and supplies. We attended a discharge planning conference with his cardiologist, pulmonologist, respiratory technicians, care managers, and home nursing agency. We have signed papers and checked off checklists.
Peter, on the other hand, has no idea what's in store! He has been steadily growing and learning how to be a good eater. His tube feeding is turned off for 8 hours each day and during that time he takes his food from a bottle. He now eats the same mixture of 45% fat-free breast milk and 55% fat-free formula concentrate that he gets through the tube. The idea is to get more calories in by mouth so that the tube gets used less.
Tomorrow will be a busy day. The triumphant convoy back home will feature Peter travelling by ambulance for his comfort and the entertainment of our neighbors. There will be people in and out of the house for several hours checking and adjusting his equipment, etc. I am curious to see how Peter takes it all. He was so amazed at being moved from PICU to the third floor that he did not nap the entire day--no telling what he will make of this. Praise God that he has brought us this far, and pray that he will help us all adjust to this wonderful change.
Peter is all set to be discharged tomorrow! The past week has been very busy. Michel and I have each spent a night at the hospital learning Peter's night routines (thank goodness, he is a good sleeper). We have had five hours of training on his machines--ventilator, oxygen monitor, suction pump, food pump. We have learned how to administer his medications. We have rearranged the living room to accommodate his crib, equipment and supplies. We attended a discharge planning conference with his cardiologist, pulmonologist, respiratory technicians, care managers, and home nursing agency. We have signed papers and checked off checklists.
Peter, on the other hand, has no idea what's in store! He has been steadily growing and learning how to be a good eater. His tube feeding is turned off for 8 hours each day and during that time he takes his food from a bottle. He now eats the same mixture of 45% fat-free breast milk and 55% fat-free formula concentrate that he gets through the tube. The idea is to get more calories in by mouth so that the tube gets used less.
Tomorrow will be a busy day. The triumphant convoy back home will feature Peter travelling by ambulance for his comfort and the entertainment of our neighbors. There will be people in and out of the house for several hours checking and adjusting his equipment, etc. I am curious to see how Peter takes it all. He was so amazed at being moved from PICU to the third floor that he did not nap the entire day--no telling what he will make of this. Praise God that he has brought us this far, and pray that he will help us all adjust to this wonderful change.
Sunday, August 30, 2009
Bottle success!
Another update with good news. Today Peter drank 28 mL of skimmed breast milk from a bottle, about one fluid ounce. For most babies this is just a fraction of a meal, but for Peter this is really big news. Before now it has been only a few tastes, licking and chewing on the bottle--enough to show that he liked the idea. He just couldn't or wouldn't duplicate the vigorous sucking he can do on a pacifier.
We and our nurse had a theory that he just never felt hungry enough to really try to eat. Today, the doctor gave permission for his feeding tube to be turned off for 4 hours. After about 3 1/2 hours Peter was sucking anything, whether the pacifier or my finger (the latter so hard he was leaving gum marks in the skin); if I took it away he got testy. The nurse quickly got us a bottle ready and what do you know? Coordinated sucking and swallowing was no longer such a mystery!
Tomorrow Peter gets to go for six hours with the feeding tube switched off. We are hoping he will build on his success today and learn to relish the sensation of a full tummy. (Right now he gets fed directly to his intestines, so his stomach always stays empty.) After drinking the ounce of milk he promptly began to get drowsy; when we left he was sound asleep. Before he drifted off he gave me a satisfied, contented smile.
We and our nurse had a theory that he just never felt hungry enough to really try to eat. Today, the doctor gave permission for his feeding tube to be turned off for 4 hours. After about 3 1/2 hours Peter was sucking anything, whether the pacifier or my finger (the latter so hard he was leaving gum marks in the skin); if I took it away he got testy. The nurse quickly got us a bottle ready and what do you know? Coordinated sucking and swallowing was no longer such a mystery!
Tomorrow Peter gets to go for six hours with the feeding tube switched off. We are hoping he will build on his success today and learn to relish the sensation of a full tummy. (Right now he gets fed directly to his intestines, so his stomach always stays empty.) After drinking the ounce of milk he promptly began to get drowsy; when we left he was sound asleep. Before he drifted off he gave me a satisfied, contented smile.
Friday, August 28, 2009
New vent and new wheels
Hi everyone,
Once again we're overdue for an update. On Tuesday, Peter was switched over to the type of ventilator he will have at home. We were told it was small and quiet. As for the size, you can look at the photo of it next to the hospital ventilator and judge for yourself; it sounds like a junior Darth Vader machine. The pulmonologists tell us that as Peter grows and gains in weight and strength, we will be able to wean him off the ventilator at home. This will happen over a matter of a few months. Contrary to what I had always understood, the development of Peter's lung passages before birth was affected by his heart defect. This just means that he needs that extra time on the ventilator as his lungs continue to grow and adapt to the corrected circulation between heart and lungs.
In the meantime, discharge is starting to feel closer. We have met most of our home nurses, and the nursing agency gave us a schedule of nurses for the first month. No official word yet, but the agency chose the day after Labor Day (8 September) as a tentative discharge date for scheduling purposes. The medical equipment company will come and look at our "home environment" this Monday--mainly to see if our electrical outlets are up to snuff--and on Tuesday we will have three hours of training at home to learn about the ventilator and food pump.
Over the past couple of months it has slowly dawned upon us that our little Toyota Tercel would not be big enough to transport two boys, one with medical equipment, two parents and possibly also a nurse. Thus, for the past few weeks we have been squeezing car shopping into our schedule along with everything else, and we are now pleased to announce the result. We found a nice 1999 Honda CR-V in our price range that was so clean it looked almost like it had been brought brand new into the present in a time machine.
Now we can turn our attention to preparing the house for Peter's homecoming. His crib will go in the living room; we'll have to make space for his medical supplies and a comfortable workspace for the nurses. We're busy but very happy. Sometimes we could use a nap.
Once again we're overdue for an update. On Tuesday, Peter was switched over to the type of ventilator he will have at home. We were told it was small and quiet. As for the size, you can look at the photo of it next to the hospital ventilator and judge for yourself; it sounds like a junior Darth Vader machine. The pulmonologists tell us that as Peter grows and gains in weight and strength, we will be able to wean him off the ventilator at home. This will happen over a matter of a few months. Contrary to what I had always understood, the development of Peter's lung passages before birth was affected by his heart defect. This just means that he needs that extra time on the ventilator as his lungs continue to grow and adapt to the corrected circulation between heart and lungs.
In the meantime, discharge is starting to feel closer. We have met most of our home nurses, and the nursing agency gave us a schedule of nurses for the first month. No official word yet, but the agency chose the day after Labor Day (8 September) as a tentative discharge date for scheduling purposes. The medical equipment company will come and look at our "home environment" this Monday--mainly to see if our electrical outlets are up to snuff--and on Tuesday we will have three hours of training at home to learn about the ventilator and food pump.
Over the past couple of months it has slowly dawned upon us that our little Toyota Tercel would not be big enough to transport two boys, one with medical equipment, two parents and possibly also a nurse. Thus, for the past few weeks we have been squeezing car shopping into our schedule along with everything else, and we are now pleased to announce the result. We found a nice 1999 Honda CR-V in our price range that was so clean it looked almost like it had been brought brand new into the present in a time machine.
Now we can turn our attention to preparing the house for Peter's homecoming. His crib will go in the living room; we'll have to make space for his medical supplies and a comfortable workspace for the nurses. We're busy but very happy. Sometimes we could use a nap.
Wednesday, August 19, 2009
Closer to Home
Sorry for the long delay in posting--it's been very busy. We have been working with an agency to set up home nursing care for when Peter comes home, a day which is drawing ever closer.
Peter has been very happy in his new surroundings on the third floor, and so have the rest of us. Daniel's favorite feature is the big playroom.
Over the past week, we have worked hard on bottle feeding. He likes milk and he likes to suck, but after 3 months unable to indulge his nursing instinct, he just doesn't seem to be able to put the two together. This has made him rather dependent on the tube in his nose and finally the doctors decided that his progress to normal bottle feeding was too slow. Because he could not go home with a nose tube (which he would pull out every now and then, the rascal), they put in a so-called g/j tube today. This was, yes, another surgical procedure placing a double tube-inside-a-tube directly through his skin into his stomach, with a smaller extra tube running past his stomach into his intestines. This is fastened more securely than a nose tube and is said to be less irritating to the patient. Peter will be able to go home with this in place, so we can feed him through the stomach tube. At the same time, we will be able to keep training him on the bottle--every now and then he does catch on (and latch on) and we do hope we'll make more progress with the nose tube now out of his face and throat.
Peter was happy and awake when we left after his surgery today. He will stay in the PICU overnight for observation before returning to the 3rd floor tomorrow. Everyone still remembers us even in the fast-paced PICU and it was like being back in the old neighborhood.
By the way, we've updated the photo album on Picasa.
Peter has been very happy in his new surroundings on the third floor, and so have the rest of us. Daniel's favorite feature is the big playroom.
Over the past week, we have worked hard on bottle feeding. He likes milk and he likes to suck, but after 3 months unable to indulge his nursing instinct, he just doesn't seem to be able to put the two together. This has made him rather dependent on the tube in his nose and finally the doctors decided that his progress to normal bottle feeding was too slow. Because he could not go home with a nose tube (which he would pull out every now and then, the rascal), they put in a so-called g/j tube today. This was, yes, another surgical procedure placing a double tube-inside-a-tube directly through his skin into his stomach, with a smaller extra tube running past his stomach into his intestines. This is fastened more securely than a nose tube and is said to be less irritating to the patient. Peter will be able to go home with this in place, so we can feed him through the stomach tube. At the same time, we will be able to keep training him on the bottle--every now and then he does catch on (and latch on) and we do hope we'll make more progress with the nose tube now out of his face and throat.
Peter was happy and awake when we left after his surgery today. He will stay in the PICU overnight for observation before returning to the 3rd floor tomorrow. Everyone still remembers us even in the fast-paced PICU and it was like being back in the old neighborhood.
By the way, we've updated the photo album on Picasa.
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