All Stitched Up

After some discussion on Monday, the surgeon who was on call, (our sugeon is away), decided that it would be best to try and stitch Noah's line in place. So we spent the afternoon in the ER and a couple of stitches were put through the cuff into Noah's skin to make the line more secure. This is a temporary fix, and not ideal, but Noah's line is just far too precious to lose, and short of changing the line, this is our only option. Since we still have some work to do to decrease Noah's dependence on this line, hopefully this will buy us a bit more time. His risk of infection is higher with no cuff to protect it, but even if we get a few more weeks, it's better than nothing! We've had this line since June, which is pretty good for Noah, but these lines should be lasting us much, much longer.

Placing our cares in the Father's hands...

Photo Shoot

My sister, Erin, blessed us last week by offering to do some photographs for our family. We've been talking about doing some with Noah for a long time, but just when we'd think about doing it, he'd end up inpatient again. I am so thankful we finally did it! We got some great shots and now I don't know how I will choose which ones to get printed! These are only just a small portion of the pictures we got. The shots I posted on his birthday were also from Erin.Thank you Erin! Please check out her website:

http://www.erinkeownphotography.com

Noah's antibiotics ended on Wednesday (although I have heard rumours that we might restart them??) but so far so good. We have also figured out the mystery of the brown spots, which are now gone (we think a bit of silver nitrate dropped on his neck while doing his dressing). Our big issue right now is that the granulation tissue around his central line has pushed the cuff of the line right out. The cuff is what hold the line in place and prevents infection from getting in around the line. Needless to say, it is very risky having no cuff as protection. I am waiting for Monday to call our TPN nurse and see what our surgeon has to say about this, and praying this will not mean a line change.

Party Time!

3 year stats...

Weight: 7.2Kg or 15lbs 13oz

Height: 75cm or 29 1/2 inches

We had a beautiful day for a BBQ on Sunday to celebrate Noah's birthday.

Of course, Noah got spoiled with gifts.
A little overwhelming, perhaps??Noah's favorite gift...his Baby Einstein DVD of course!

Unfortunately, he still couldn't eat his cake, but he certainly was fascinated with the candles.

Cleaning up!!

Happy 3rd Birthday

You are 3 today... our little bundle of joy... our beautiful ray of sunshine. We love you more than words can say and give thanks to our Father for bringing us to this day..

May the Lord bless you and keep you

May the Lord shed his light upon you

May the Lord look upon you kindly and give you peace.

Another Week!

We've been soaking up the last of these beautiful summer days and I managed to snap some pictures of the kids in the backyard last week.

Noah's long course of IV Ancef ended yesterday and I've been dreading this for a while, especially with his birthday coming up on Sunday. His line site is still draining crud and we've been silver nitrating it with no improvement. He's battling a cold, and yesterday was a particularly rough day of retching, secretions and worries about aspiration. (Not sure if this is cold related, or due to the small amount of Neocate we have started adding to his Tolerex formula. Time will tell...). Call it that "mommy instinct", but I've been worried about what will flare up once he is no longer covered with the Ancef. We are no longer in the "Noah's doing great" days, but rather in the "he's ok, but things aren't quite right" days. We met with ID yesterday, who wanted to stop the Ancef and have a team meeting down the road to discuss trying the ethanol locks. Not what I wanted to hear. I had been hoping that this would all be sorted out and ready to go. But the appointment was a bit of a jumble, since someone had cancelled it for some unknown reason, and no one was prepared to see Noah there.
Music therapy was a bright spot in the day though!

But it looks like we will be able to breathe for a few days longer and hopefully get through the weekend. Thank you, Doris, for once again being our advocate and buying us another week of antibiotics! We are going to restart him on Ancef this afternoon until next Wednesday. And hopefully by that time, we will have something sorted out with the ethanol locks.

Patience... a lesson I am continually being taught...

Another bizzare thing has cropped up. Noah has developed 2 very noticable brown mole-like spots that have literally appeared on his neck/chest overnight. ID was stumped as to what they might be and have suggested that for now we "watch and wait" to see if they change.

Placing all my cares in His hands...

Olivia

A special girl needs our prayers this afternoon. As I post this, Olivia is having exploratory abdominal surgery. Please pray that the surgeons will find an answer to her pain. We met Olivia at the Oley Conference and she holds a special place in Kailyn's heart. To see her doing all the normal 8 year old stuff, with "tubes like Noah", was a wonderful lesson for Kailyn. Olivia, we are all praying like crazy for good news!!

http://www.caringbridge.org/in/oliviablinndekold/index.htm

Goodbye Oxygen!

Noah had an overnight oximetry study done on Monday night and the results are in...no more oxygen! His study was dramatically improved and he was satting around 98% almost all night with only 1 minor apnea episode. The oxygen will stay in our home for now, in case things change when he gets sick. It is nice to still have that backup there as I'm still a bit concerned about how he will do long term. But hopefully he will continue to do well and we will be able to say goodbye to "the beast" once and for all! He is also only using his ventolin once or twice a week these days, so respiratory was very happy with his lung function! It's such an answer to prayer to see improvement! Now if only we could get that gut working right. One step at a time...

The house is suddenly so quiet at night without the roar of the concentrator...too quiet. I never realized the annoying sounds his other pumps make! Think we'll have to get a fan...

Walk/Run for Children

A huge thank you to all who donated in Noah's name. Together we were able to raise $370 for the Children's Hospital Foundation. Not bad for only deciding to do this a week ago! After dragging ourselves out of bed into a very brisk, windy fall morning, we all had a fun time walking the 3K around the University and enjoying pancakes, sausage and hot chocolate at the finish line. The kids loved the clowns, face painting and bouncers, and of course, Dr Goodbear.

~Fall is Here~

It's hard to believe the summer has come to an end. We spent the weekend at Grandma & Grandpa Loewen's and the kids had fun helping with the harvest...a sure sign of fall. And on Wednesday Kailyn started grade 3 and Joshua started grade 1, which means full time school for both of them this year. A big change for us, and suddenly the house is SO quiet! Noah is already becoming bored withough the kids to follow around all day which means I have become his primary source of entertainment (and his Baby Einstein videos of course!). Many of his days are filled with appointments and therapy which helps, and the RCC is running a music therapy program on Tuesday afternoons starting later this fall. This he is sure to love!

Noah is still behaving himself these days. Although his stoma and central line site are both still giving us grief. His line site is growing granulation tissue which we've been treating with silver nitrate, but it is still quite a mess. And his stoma still looks ugly with yeast. We did a 3 week course of Gentian Violet, which did not help. Now we are trying Viaderm cream for the next week. It is very raw and painful for him right now. I'm sure the IV antibiotics aren't helping the situation!

We had TPN clinic this week and Noah has lost a bit more weight (15lbs 12oz), so we have increased his lipids. There are big plans in the works to try and get Noah off TPN and get rid of his central line. This is our ultimate goal, as the line has caused so many complications. But we somehow need to get his gut to tolerate enough fat and for his body to actually gain weight without the lipids. The plan is to try to replace some of the Tolerex with Neocate to increase the fat content we are giving in his gut. It will be a very slow process, but it's definately worth a try. He's been on full Neocate in the past, but he's always been uncomfortable on it, had lots of diarrhea and did not gain well. However, perhaps in lower quantities, mixed with the Tolerex he may do better. So once we get our first shipment of Neocate, we will give this a go.

Tomorrow is the Investors Walk/Run for Children. A huge thank-you to those who have donated in Noah's name. You still have 1 more day to make a donation!! (see the blog entry below for instructions on how to donate)