Skip to main content

Four Weeks Old

Well our little man is now four weeks old and getting closer to his due date! Almost time for the doctors to stop adjusting him to gestational age - now they will just adjust his age starting from his due date.

 But we don't care about that! Lucas is 4 weeks old to us!!!

 The last week Lucas has been going through a growth spurt which has made things a little interesting on the PKU front as it has caused big changes in his Phe levels. When he goes through a growth spurt or when he gets sick he will need higher levels of protein to keep up. This meant we increased his breast milk intake by quite a bit which hopefully will help him put some more weight on. He weighed in at 5lbs 12oz on December 4th and we will have an updated weight on Thursday this week.

 As people can guess we have decided to bottle feed Lucas due to needing to closely monitor exactly how much breast milk he is getting vs how much formula he needs. He still gets my breast milk, but this just means I pump and bottle it for him. Means Mommy can leave Lucas with Daddy or Grandparents and sneak away if she so desires!

 So now let me talk about this medical formula for a moment. From what Jeff has found, this formula runs around $100 a can - which Lucas has gone through two and a half cans in the 3 weeks he has been on it. Today I received our next shipment of formula which contained 8 cans. Meaning at the moment we have approximately $1,200 in medical formula sitting on our shelf. Now this is where I am going to sing praises to our health care system.

 Yes, Alberta Health Care has some flaws and problems (but I am not here to go into those) but let me take a second and point out what Jeff and I have NOT had to pay for:

  • I was on medical bed rest at home for 3 weeks with a home health care nurse visiting me daily to monitor me & baby
  • When it became necessary I was admitted to the hospital for 12 days on bed rest where I was given 3 meals a day
  • 3 times baby showed signs of distress and I was given an emergency ultrasound - the last one was the one that discovered that baby was indeed in distress
  • I was induced and then taken in for emergency cesarean section
  • Lucas was hospitalized for 10 days in the NICU where he was given the heel poke test (as all newborn babies are) which is how his PKU was discovered
  • Lucas received referrals to his medical team and dietitian AND was started on the PKU medical formula
The formula Lucas will be on now, and most of the non-perishable medical foods he will need to eat for the rest of his life, will be paid for by the health care system. They pay for it because it is life threatening to babies, children, teens, and adults if they do no have access to this medical form of protein.

I am very grateful for the province we live in, I know there are many many who are not provided for in this way.

Approx. $1,200 in medical formula for Lucas

Labels:

Comments

  1. Anonymous10 December 2014 at 14:11

    Our system has its flaws but its because of our system that Lucas will grow big and strong! <3

    ReplyDelete

Post a Comment

Popular posts from this blog

Introduction

Hello & thank you for taking the time to find and start reading this blog about our journey as we discover what parenting an infant with PKU means for us. Now most people who we talk to (including a fair amount of medical professionals) have no idea what PKU is or what it means to have this condition.  So let's start by trying to explain PKU to those who don't know what this condition is (just like Jeff and I the day the doctor told us that Lucas had it). The following is information provided by  http://www.canpku.org/  which is the Canadian PKU site. PKU is short for phenylketonuria (pronounced fen'-il-kee'-to-nu'-ria) PKU is a rare, inherited metabolic disease that results in mental retardation and other neurological problems when treatment is not started within the first few weeks of life. (Lucas' condition was caught within the first days of his life and treatment was started the same day) People with PKU are missing an enzyme to break down pro
3 comments
Read more

Drug Trial

As 2016 is coming to a close I am very much looking forward to the very exciting things that the new year will bring our family. One of the big things we are looking forward to is Lucas doing a drug trail with a medication called KUVAN. What is KUVAN & why should we try it? (much of this is copied from the http://www.kuvan.com website)  This medication trial offers us the chance to see if Lucas is a responder to KUVAN. KUVAN is a form of the cofactor (or helper) BH4 that already naturally exists in your body. In people who respond to treatment with KUVAN, it works in the body just like BH4 does to help stimulate residual PAH enzyme activity to convert Phe to tyrosine and lower blood Phe levels. KUVAN has been prescribed along with a low–Phe diet to lower blood Phe levels in many people with PKU of all ages and types In many people with PKU, KUVAN increases the activity of the PAH enzyme that isn’t working properly. In other words, the PAH enzyme that isn’t working “wakes up” and s
3 comments
Read more

Reality Check

While visiting a doctor's office for a standard procedure for Lucas I had panicked moment when they went to give him Infant Tylenol. I realized I had no clue what medications he would be allowed, only that there was many he would not be able to have due to ingredients that would effect his phe levels. We stopped them from giving it to him and I placed a call into his dietitian to inquire. The Tylenol is fine, as it has no aspartame.  This served as a strong reality check for me that this is something that will happen in his life and I will have to find ways to adapt and make decisions based on the knowledge I have of his condition. This is where again I am thankful for our health care system where I am able to call his clinic and they can help us out.
2 comments
Read more