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.

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.

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.

Monday, August 10, 2009

Peter's new digs

Hi everyone,

Good news! Today Peter graduated to the third floor "Intermediate Care" unit, or as Daniel calls it, the Getting Well Floor. His new room is several times the size of his intensive care room. It has a sofa, a bathroom, and other features that will make it more comfortable for us to spend a longer time each day together as a family. There is a playroom which sent Daniel into ecstasies. The atmosphere in the new unit is serene, a great departure from the bustle of the PICU. Peter will probably have to adjust to the quiet!

Peter is currently on the lowest ventilator setting (CPAP), which means he is taking all his own breaths with just a little pressure support. Soon he may be ready to go without the ventilator for part of the day, wearing what is called a "nose" over his trach. (I had imagined the "nose" as something out of a Mr. Potato Head set that attached to the trach, but it is actually just a sort of filter.) Also, Peter went down a notch on his methadone over the weekend.

Peter is getting better at sucking on his pacifier and has had some success drinking from a bottle. Now we are hoping he will really catch on quickly. If this does not happen the doctors may decide to insert a G-tube, which is a tube that runs directly into his stomach (not down through his nose). His long, agile little fingers are very adept at pulling out his NJ tube (nasal feeding tube). So our prayer requests remain the same: less vent, less drugs, more success bottle feeding!

Sunday, August 2, 2009

Two Brothers

Hi everyone,

Time for another update. Peter continues to make progress on three fronts: reduction of his ventilator support, reduction of medications, and increasing his feedings. His ventilator settings have been reduced daily over the past week. His ativan and methadone weaning has to be slower; if it is reduced too drastically he shows symptoms of gagging, fever, and anxiety.

As for his feedings, Peter is receiving a 60/40 mix of nonfat breast milk and Portagen (a non-fat formula) through his feeding tube. It is necessary to mix the two to ensure he gets enough calories. The occupational therapist continues to work with Peter on teaching him to use his mouth to eat. Peter is certainly interested, but the presence of the trach and the feeding tube in his throat, not to mention his lack of experience up to this point in life, make swallowing difficult. Today the nurse told us that because he was now receiving enough food in his feeding tube, they would be reducing his IV fluids each hour until they were discontinued entirely sometime tonight. This is good news for Peter's kidneys. Apparently the concentrated nutrition in IV fluids puts a strain on kidney function. Peter is still on pretty heavy-duty diuretics, and these can be reduced now as well.

The medical staff are hopeful that Peter will be ready to move up to the recovery unit and out of intensive care soon. We'll keep you posted! Here is a picture of Daniel's first chance to hold his little brother. Daniel was very careful and gentle, and it was a delight to see how pleased and proud he was.