We've had 2 hours of sleep and 14 different classes...shunt class, CPR class, discharge class, car seat safety class, etc. It's unbelievable! I have a whole bag of information we are suppose to remember. We have medicines we are giving around the clock. We are feeding for an hour every three hours so I have NO idea how I am suppose to ever sleep again. He has a feeding tube and will have it for a little while. We have to give him the bottle for 20 minutes and then put the rest through the pump. Once we get discharged we've got an appointment every week in Atlanta for 6 weeks, not counting his appointments in Albany. I need a nurse nanny - QUICK! Oh and home health will come to the house every week for 18 weeks. So needless to say our lives will never be the same! But we wouldn't have it any other way! He is precious and we will get the hang of everything and it will be our life.
We are so excited about the prospect of going home. We have had a small taste of family life with just the two of us taking care of our little man since last night. It has been really nice.
We were reminded this morning by the Hospital Cardiologist that our son's condition is still critical. We need to be aware of any changes in his skin color and breathing patterns. He is much more succeptible to infection than a non CHD baby. We have to monotor his fluid intake and outflow because dehydration is a serious issue for him. Just looking at him he looks beautiful and perfect to us. There are no signs of his broken heart.
Please continue to pray for all of us... Our journey has just begun and it will be long and hard but he is worth every minute of it. God has given him to us for a reason. He has touched so many lives and will continue to bless more. Thanks everyone for the love an support.
Jordan is doing so unbelieveable well. I'm so happy to hear it! It is stressful in the beginning with ALL of the appointments. I honestly didn't mind having home health coming and having cardio appointments weekly for awhile for reassurance that we are doing everything right. After awhile, everything will start to slow down and sometime after his second surgery you will probably be going months without appointments! I know it doesn't seem like something that will happen but it will! Give Jordan a big hug for us and we are praying for you all always!
ReplyDeleteAm glad to hear that his step down is going well!! Praises for God's continual faithfulness!
ReplyDeleteI was gone for a few days and was missing the Jordan updates - this is all such good news. I remember the step-down unit, crazy nights and classes all so well. Hang in there - he is such a strong little man!!
ReplyDeleteOh how I feel for you. I can totally relate to that moment when you are force fed all of that information and have this overwhelming feeling of "how are we going to do all of this". We had to do the tube feedings that took an hour every three hours and I can tell you that we didn't get any sleep because Logan also had severe reflux so after every feed he would vomit. So it was always feed, clean up vomit, bathe, rock back to sleep only to start it all over again. I can tell you this though it DOES get better. You get a system figured out and it all becomes like second nature.
ReplyDeleteOne piece of advice would be to see if your insurance company will pay the rental for a feeding pump so you can do a continuous feed overnight (overnight drip) so everyone can get some rest. After four exhausting and sleepless nights our believed pediatrician took one look at our exhausted and overwhelmed faces and got us a feeding pump. Life got better after that.
Your cardiology nurse practitioner or social worker should be able to check into if you can get one. Praying for you!!