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)

~Walk For Noah~

On Sunday, September 7th, the Investors Group is sponsoring a walk/run for children http://www.investorsgroupwalkrun.com/default.shtml
So our family has decided to participate in the 3K fun walk/run in an effort to "give back" to our children's hospital. If you would like to make a donation, please go to http://www.runningroom.com/dashboard/donations/findathlete.php?guest=1
Search for Noah Loewen.

Donations can be made online and you will recieve a tax deductable receipt.
All proceeds go to support the Children's Hospital Foundation of Manitoba.

Back Together Again

Noah is all fixed up and back together again. It was a difficult insertion this time and it took many tries over 2 hours, but his GJ tube is back in. I asked if someone could maybe superglue it in this time...I was only half joking! Really, someone out there needs to invent a better tube, or an easier way to insert it. Hopefully we can take a bit of a breather now before September rolls around and the kids are back in school, dragging every virus home with them. Despite the little blips, it has been a good summer, so much better than last year and for that we are so thankful!

Weekend at the Cabin & Tube Woes Again!

Noah has been doing well since discharge. He is now on Ancef IV until mid September which will hopefully help to keep him out of hospital. And once the antibiotics are done, we are hoping to try ethanol locks in his central line. It feels good to have some plan of action to hopefully try to break this vicious cycle of infections. No guarantees that it will help, but it's worth a shot.

We were able to spend a wonderful weekend at my parent's cabin at Lake Metigosh. The weather was perfect and we spent lots of time out on the boat. I forgot my camera, so I don't have any pictures to post, but hopefully you can email me some, Mom. This week the kids are at Vacation Bible School here in town and we are slowly getting back into school mode. Still have a couple of elusive school supplies to buy, but for the most part, we are all looking forward to September!

And now today Noah's GJ tube came out...again! It's becoming a huge frustration and I just don't know what we can do differently. He is just so busy and constantly tugging at those lines. I wish we could somehow super glue that thing to his stomach! His stoma is still a bit of a mess with yeast (we've been painting it with Gentian Violet), which doesn't help the situation. So tonight we will just run fluids through his central line and tomorrow afternoon Noah has an appointment to have it put back in. No, we are not very popular with the radiologists!

Home

Discharge finally! We are home.

Still Waiting

I'm starting to think there is some conspiracy to keep Noah inpatient. We went back in first thing this morning, only to discover that we were no where closer to getting things lined up for discharge. So after a long frustrating day, we were finally allowed home on a pass for the night, to return again first thing tomorrow morning. Hopefully things will be organized for discharge tomorrow, although I won't hold my breath. Doris, we miss you!!