It's been a crazy day. I'm trying hard to be patient with all the different docs and nurses who are involved in Liam's care, but today it was a challenge. This morning, it looked like we were set to be discharged. Liam hit all his feeding goals late yesterday and overnight and when he pulled out his NG tube overnight, the night nurse left it alone and said they would probably remove it entirely this morning. The morning nurse, med student, and resident who came in early this morning all started preparing me for a discharge today, pending the opinion of the cardiologist.
When the cardiologist came by, she told me that Liam had lost weight. Since he was hitting all of his feeding goals, she said she wanted to increase the fortifier in his breast milk. I said, "What fortifier?" Turns out she had ordered a fortifier 48 hours ago that was to be added to the breast milk with every feeding and no one ever followed through on it, leading Liam's weight to start dropping. I wasn't even aware it had been ordered. So, we are here in the hospital for another 48 hours to give Liam a chance to gain back what he lost. The cardiologist was very frustrated with the entire situation, and arranged almost immediately for us to be moved over to the regular cardiology unit. We had been on cardiac overflow, which is actually an oncology unit, and the nurses just didn't seem to know how to manage Liam's care. I noticed an immediate improvement in nursing care when we moved over to the regular cardiology floor. It just felt like we were suddenly all speaking the same language.
Please pray we are able to go home in the next 48 hours. Sarah is having a tough time dealing with Mama being gone so long, and Mama is really homesick, too.
Some good news, though: They did another heart echo today and found the pressures they were so concerned about last week were "dramatically improved." Additionally, the coarc repair continues to look beautiful, and some of the growth they wanted to see in certain areas of Liam's heart is starting to happen. :):):) We were all very happy to hear this!!!! Please pray we will continue to see improvements in Liam's heart as he grows.
In Christ,
Bill and Lisa
The Serenity Prayer seems very appropriate tonight: "God, please grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
Subscribe to:
Post Comments (Atom)
4 comments:
I know that it is very hard to be patient. The Serenity Prayer is a good one. The 23rd Psalm is one of my favorites too for dealing with hard times. Hang in there, Lisa. We're all so happy to hear about Liam's good news!!
Ali
You are so close to getting home that you can imagine what it is like, so I'm sure that makes it harder to wait. The hunker down mentality has given way to hope and new expectations. It will happen. Your whole family will be in your own home soon. Doesn't that sound great!
Love, Karen
You're on the home stretch. I remember how endless the "waiting to gain weight" process was. As I said yesterday, it took a while for Wren to gain weight for a few days. Even though he was on the calorie supplement (they have different calorie additive levels) he continued to lose weight for a few days. It turned around after that but it was discouraging to be so close.
It also meant that we had to keep the ng tube longer even though he was nursing okay. That too was only a short period at home.
Good luck and I hope it is just a matter of those 48 hours of even less!
Here is some of the story of our weight gain and discharge experience:
Echobaby
I'm glad to hear that they've got you on the regular cardiac floor. It has to be so frustrating, but try to picture yourself in 48 hours being home with Liam. You are getting closer -- just keep your eyes on the prize, having your entire family at home.
Post a Comment