"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.
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Thank you for the update. Thank you, Lord for the progress being made in little Peter's body!
ReplyDeleteContinuing to pray for him and all of you,
Carla
Hallelujah!!! YES, YES, YES--go bottle feeding!!! We are praying that Pater's body will smoothly adjust to the fats.
ReplyDeleteLove you all so much,
The Van Heests
Thank you for continuing to update all of us in Peter's circle; he remains in thoughts and I am so glad to see that he continues to improve!
ReplyDeleteRachael
Betsy,
ReplyDeleteThank you for sharing this with me. It was funny when you left the store and wrote down Peter's blogspot that I knew, I just knew something was "odd." And for some reason before I even typed in the blog, I knew Peter had a heart condition. Must be a intuition thing with parents that have children with heart conditions.
I must admit that it was very difficult to read through Peter's blogs. Too many familiar names, Overman, Moga, and Baker (Devon had the same surgeons and Baker was her #2 cardiologist) and terms, ECMO, Portagen, etc... But, I made it through. And it seems to me that you guys are making it as well.
If I may give one bit of advise and I hope this is appropriate, Dr. Baker told my wife and I this one day, "With these kids, it's not a sprint, it's a marathon." This was one of the quotes that helped me when I was down. I realized that I couldn't make Devon better overnight, but she could get better over time.
If you ever need to come up and chat, you have a place to come and chat with a parent that has gone through what you are going through.
Daren Jenson
Devon's Gardens
Dear Betsy, Michel, Daniel and *Peter* (that's an extra, gentle hug sent over the web),
ReplyDeleteThough we haven't been too good at keeping up with writing (social secretary is in the middle of the semester and NOT handling it all smoothly yet!), we have been thinking of you and praying for you often. We're so glad to know that Peter is able to do without at least some of the tubes and meds, and hope that the progress continues and that God grants you the grace to keep handling the snags with the strength that you have thus far. To paraphrase one of our favorite movie lines, whoever said that life would improve in one continuous slope was "selling something!"
Lots of love,
Kristina, Dave and Madeline