TGIF

We're glad to report that we got safely to the doctor's office and back this time without incident. This was the first time the pediatrician had seen Peter. He said he was glad to finally meet this little guy after hearing so many rumors of his existence! The doctor approved special monthly shots (Synagis) to prevent respiratory viral infections. He also gave the green light for starting solids, so we wasted no time mixing Peter up a nice bland bowl of baby cereal this evening. Peter's initial verdict: "Hmm... this is an interesting but weird way to eat."

In other news, Peter has been 'talking' a lot lately, making the usual sounds a baby makes at 5 months. We are very excited, because it's not always possible for a baby with a trach to make sounds. He seems most talkative when Daniel is in the room but also carries on conversations with his toys.

Just another manic Monday

Hi all,

Things had been going so well.... Today we were supposed to take both boys to the pediatrician for a checkup. We packed up and had to go in two cars because it would be hard to squeeze a nurse in between two carseats in the back. I went with Daniel in the smaller car. Michel, Peter and nurse drove away before we did, so we were surprised when we got to the doctor's office and they weren't there yet.

Come to find out, on the brief 10-minute drive from home to the doctor, Peter threw up all of the large feeding he'd had before we left. It went everywhere--including down his tracheostomy, which blocked his breathing. Michel and the nurse had to pull over and change out his trach and suction the vomit, then they rushed to the nearby hospital's emergency room as Peter was still having difficulties.

By the time they got word to us at the doctor's office, Peter was stable once more. Daniel and I left the doctor's office in mid-checkup. When we got to the emergency room, Peter was happy to see us and his face brightened at the sight of his big brother. Peter's been tired but otherwise quite normal since we got home. That's more than can be said of his parents. The appointment is rescheduled for Friday, so perhaps we'll all have recovered our strength and sanity by then. On the bright side, the ER doctors did a chest X-ray and Peter's lungs looked even better than they did at his last cardiology appointment.

50/50

Peter has now been home for one month! We went back for another checkup at the hospital on Thursday. The cardiologist and pulmonologist were extremely pleased with the way Peter's chest X-ray looked. They even saw an improvement compared to the previous visit. Consequently, Dr. Baker said that Peter could go to a 50/50 mix of my milk and the Portagen non-fat formula. This also seems to agree with Peter, as he has been eating heartily and growing! There were no changes to his medications or ventilator settings this visit.

With our busy lives we don't have as much time to enjoy our favorite genre of pleasure reading, the mystery novel, as we would like. Luckily we get the real-life version every few days. First it was The Mystery of the Missing Stethoscope, which disappeared for almost a week but actually never left the room. Then yesterday it was the Case of the Nurses' Shoes. We had two nurses for a certain shift. (One of them was doing orientation.) They were both wearing similar shoes. When their shift ended, Nurse A left and Nurse B was distraught when her shoes were nowhere to be found. Fortunately she had an extra pair in her car. Five minutes after she left, Nurse A turned up to return Nurse B's shoes, which she had put on by mistake, and retrieve her own. Nurse B's shoes are still here.

Daniel is doing a great job as a big brother. Today he was trying to teach Peter the alphabet using flash cards. You may laugh, but Peter watches everything Daniel does with rapt attention. He may have Peter so well educated by next year that they will be able to start kindergarten together.

More progress

"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.

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.

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.

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.