Tuesday, April 28, 2009

Braces & Standers

We spent the morning at Rehab Center for Children. Our physiotherapist has been trying to get us in there for a while, and there happened to be a cancellation today. Noah saw the new orthopedic doctor to assess his weight bearing issues. His left hip and knee are very, very tight, which is what is keeping Noah from progressing to fully standing on his own. The xrays showed that his hip is slightly out of place, but not enough to do anything about it...the good new is that it's more of a muscle issue. Because it is only on one side, it is very difficult for him to even try and compensate. So the best thing we can do is to work on stretching and positioning. They decided to fit him for a stander...a device in which Noah will be forced to stand and weight bear. Ok, that sounds a bit barbaric...actually, they do look a bit like some barbaric torturing device, but it's really not that bad. It will have a nice tray in front, so basically like a high chair, only he will have to stand rather than sit. I'm thinking this will probably be a challenge to confine him. We will have to think of some fun activities to do when he is in it.

He was also fitted for AFOs (ankle foot orthotics, or braces) to help position his ankles better. This involved casting both of Noah's feet up to his knees to make molds. This was NOT fun. Noah was VERY mad about this procedure and it was quite the wrestling match trying to get these casts on. Wish I'd had my camera...we were quite the sight, with Noah kicking and screaming...plaster EVERYWHERE! So in about 4-6 weeks, we should get the stander and braces. The stander he will spend short periods each day in, and the braces he will wear as much as possible, even for sleeping if he will tolerate them. Just another thing to add to the mix! We did get to pick a custom design for them which was fun...Noah's will be blue with cars, trucks and airplanes on them.

CPAP is going much better. At our appointment last week, we got a different mask to try, which has different pressure points. It fits him so much better and his nose is healing, with no further skin breakdown. We are now getting very little leak in the mask, which means much fewer alarms during the night. The way things were going when we first came home, I did not know how we could do this long term. But things are so much better and Noah is getting used to his nightly ritual.

Sunday, April 26, 2009

Weekend at the Farm

We were able to spend the weekend away at my parents farm, since Brad had some teaching nearby. We have not been there since last summer (not for lack of trying), so it was good to get away for a couple of days. And my camera decided to sporadically work again.

The kids spend lots of time on the trampoline, despite the chilly weather...

Kailyn & Joshua got in their craft fix with Granny...they don't see much of the sewing machine at home...

The finished products...

Monday, April 20, 2009

Quiet Weekend

It's been a quiet few days around here, which we certainly needed. Kailyn & Joshua are feeling better, and no one else has managed to catch whatever bug they had. Noah is still feeling well and is into everything, tearing apart the cupboards these days. It is so good to see him doing things he hasn't done in months. CPAP continues to be a bit of an adjustment...many alarms during the night when the mask starts to leak, and skin breakdown on his nose. Noah loves the CPAP when he is sick, but when he is well, it is an all out battle getting it on and getting him to sleep. Hopefully as this all becomes routine, it will get easier.

I am slowly falling into routine here again, although I still haven't relaxed with Noah. I think the fact that the issue from his last admission remains a mystery, so there is no telling whether it will happen again. So everytime he starts to cough, I find myself looking for bleeding.

Our camera has been having issues, hence the lack of pictures lately. I think it is officially time to lay it to rest. So I am on the lookout for a new one through the airmiles website. (Gotta spend those airmiles on something!) But since I am just so indecisive, there will likely be no pictures for a while! But I do have many more Disney pictures to post, so I will start working on those again soon.

Wednesday, April 15, 2009


A beautiful, spring day and we are home!!

Noah was moved to the ward yesterday and did well overnight. We did have to start the Nexium again today, as he is having old blood draining from his NG tube that seems to come and go. Today it was just a matter of getting our CPAP teaching done and then he was able to be discharged. We are so glad to be home, however an hour after we got home, both Kailyn & Joshua started throwing up. So I've been cleaning up puke all evening, and praying that Noah will stay safe. Anyone know where we can get one of those bubbles like on the latest Huggies commercial???

This evening Noah was all over the house, into everything...Brad & I sat and marveled at the energy he had tonight that we have not seen in so long. I don't know if it's the CPAP or just that he is feeling better, but we are hoping it will last. So now Noah is all hooked up to his CPAP, oxygen, TPN and monitors...all is quiet other than the odd beep...hopefully our first night at home goes well. And hopefully this is a longer stay at home.

Monday, April 13, 2009

PICU Day 6

Another gloomy day...where is our Manitoba sunshine???

Things are settling down nicely...Noah is doing well and had another good day off CPAP. He is ready to be transfered out of PICU and to the ward, however because of a bed crunch and staffing issues, he is still in the unit for another night. Hopefully tomorrow we can get to the ward and then put together a plan to get home soon. The respirologist on call is on board, and so it sounds like home nocturnal CPAP is the new plan...hopefully this will go a long ways in helping Noah.

Sunday, April 12, 2009

PICU Day 5 ~ Easter Day

A rainy, gloomy Easter day here...it actually seemed quite fitting. It is always easier to be here when there is not a beautiful sunny day beckoning outside the window. Another good, quiet day...Noah spent the whole day off CPAP and is back on for sleeping. He did great and he was back to his charming self, flirting with the staff and showing off all his tricks. He had a small episode of coughing up some bloody sputum this morning, but it never amounted to anything more than that. Surgery came by to talk about scoping Noah, however, we are hoping to just leave well enough alone. Right now no definate plan...just waiting this out. We are so thankful this Easter day...thankful for a gracious, loving, heavenly Father...thankful for another miracle in the life of our little one.

Saturday, April 11, 2009

PICU Day 4

A good day...Noah's 1/2 hour off CPAP turned into an hour, which turned into 2 hours, which turned into 3...he ended up spending most of the day off CPAP and did very well. It is back on for night now, but hopefully tomorrow he can spend all his waking hours off. He spent most of his day watching his Baby Einstein videos (or "baby crack" as one of the doctors has named it...seeing how addicted Noah is!), so he is quite content.

Wishing everyone a blessed Easter season.

There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say "It is well"
Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise
There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes
Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise
(Chris Tomlin)

Friday, April 10, 2009

PICU Day 3

A quiet day here, which is what we want...no more bleeding...Noah is content on his CPAP. We did try about a 1/2 hour off the CPAP today. Noah did fairly well, but was definately working to breathe by the end of the trial period and his sats began drifting down. But it is a good start to weaning, and hopefully tomorrow we can do a longer period off the CPAP. There is more serious talk once again about the need for CPAP at home. It obviously seems to help Noah so much...perhaps having him on it at night would allow his lungs some rest, give him more daytime energy and hopefully improve his overall respiratory status. We have some doctors advocating for us, however, he does not fit the normal criteria for home CPAP, so it seems there may be some hurdles to get past. However, we are getting quite used to jumping through all the hoops to get Noah what he needs.

So we are settling in for the long weekend...the kids get to have Easter with my parents...for which I am grateful. But once again, our family is separated for another holiday and I can't help but feel disappointed, knowing that we are missing out on so many memories we will never get back.

Thursday, April 09, 2009

PICU Day 2

Just when we think we've been through it all...

Noah decided to bring some excitement to the small community of La Salle yesterday. And he did it in true Noah fashion. One moment we were watching Treehouse, and the next moment Noah is coughing up large amounts of blood. It happened so suddenly...I began suctioning...and suctioning...but he just wasn't stopping. Never have I felt quite the urgency I felt right then. We have been in really bad situations, but I have always driven Noah to the ER myself, knowing that because of where we live, it is just as fast as waiting for an ambulance and going with them. But this time there was no way I could get him to the hospital with the constant need for suctioning...I called 911. Yes, there was a moment, (or moments) of pure panic, but the adrenaline took over. When the paramedics arrived, they took one look at Noah, covered in blood, and we were in the back of the ambulance on the way to the highway to meet the helicoptor. That part I certainly wasn't expecting!! How surreal to think about it all now...the helicoptor landing in the middle of the highway...police...firemen...traffic lined up. Those are images I will not soon forget. Because of policy, at first they were not going to allow me on the helicoptor, but thankfully they decided to make an exception. And so we had our first helicoptor ride (I think Brad was pretty jealous) and within 4 minutes, before I could even comprehend what was happening, we were at the airport. Here we were met by another ambulance who took us to Childrens. We were definately the talk of the hospital, and we even heard the story on the news that evening. How bizarre that we just happened to have a helicoptor standing by...amazing how God watches over Noah. It was wild...crazy and very frightening, but how thankful we are for the way it all worked itself out.

During the transport to hospital, Noah's bleeding/coughing did settle. Given Noah's history, at first everyone assumed this was a GI bleed, however, he was not bleeding from his NG tube(until later, when he had swallowed blood). Once in the ER, Noah was resuscitated with fluids and was settling nicely. He then had another episode of cough/bleeding, and it was at that point that we all decided that it looked like pulmonary hemorrage (bleeding from his lungs) and he was transferred to PICU. His xray showed some definate lung changes as well. CPAP was started to put pressure into the lungs and help stop the bleeding. We also started the pentoprazole again, just to cover him in case there was any GI bleeding. He did have one more episode yesterday evening, but since then the bleeding has stopped and he is now stable. Once again, he is happy on his CPAP and his work of breathing is much improved. As to why this happened, no one can give us an answer. His bloodwork all looks okay...no clotting issues that would have caused the bleeding. Of course, his Enoxyparin (blood thinner) puts him at higher risk for bleeding, however he is on a pretty low prophylactic dose. There was some talk of scoping him to look for a source, but the risk of anesthesia right now is far too great. So if he continues to remain stable, we may have to settle with never knowing the reason behind this new issue.

Thank you for all your thoughts and prayers. Once again, we are looking at another holiday in hospital which is very disappointing. But we are thankful...so very thankful to have our son with us this Easter. Praying for a boring, uneventful holiday weekend.

Wednesday, April 08, 2009

Up in the Air !!

Where to start. Today has been a crazy one.

At around 1230 Nichole had to call 911 because Noah was coughing up large amounts of blood. She then called me at work to let me know what was going on.

When I met them at the hospital, I noticed that they were being escorted by a flight crew rather than the typical paramedics. Then it all became very clear and at the same time astonishing.

Last week a helicopter air ambulance was brought to Winnipeg from Calgary (because we do not have one here) for the anticipated flood medevac concerns. I had met the STARS crew yesterday at the hanger as it was a pleasure to see them in Manitoba. When I saw them again today, I was even more glad that they were here.

Because of Noah's condition, they were dispatched to La Salle for him. (No flooding anywhere close to here by the way). It is interesting that Nichole had already heard about them last night from me and knew more about them than the responding paramedic crew. Regardless, they picked him up very close to our house on a major highway that had been blocked by Police and were in Winnipeg in 4 minutes.

It is not all about time, but also having experienced flight nurses and paramedics to deal with these critical and unique situations. Thank you to the STARS flight crew, the responding ground medics, and the foresight of dispatch to make the right call.

Noah is now in the PICU on CPAP with a suspected Pulmonary Hemorrhage. We will continue to see how things progress. Thank you to each person for your prayers and support as we plan to spend this Easter long weekend in the hospital.


Monday, April 06, 2009

Clinic Day

I've been so busy working on my other blog (Noah's Wish Trip) that I've been neglecting this one. But all is still "ok"...we are still home and hopefully we will not be in hospital for Easter this year. Noah had bloodwork last Thursday, and this morning we had TPN clinic. Bloodwork all looks good, even his liver enzymes are coming back down. And everyone is very happy with his weight gain. So I feel I can relax a bit...

We talked a bit about Toronto as well. We had heard back from them the day before we left for our trip. They wanted us to come to Toronto Sick Kids for April 1st and stay for a month of investigations and testing. With our trip, and then our PICU stay, we decided that we just couldn't do April. So for now, we are asking for a teleconference, in the hopes that we can do some things without having to travel and be away from home in a strange city for weeks. I am having a difficult time with the whole thing. On one hand, I do think we need some fresh eyes on Noah, and perhaps there will be some new ideas out there. But to be away from home, from Brad & the kids, to be in a strange city, surrounded by strangers...well, it's tough to think about.

We also talked a bit about the stoma surgery...there is no way our surgeon will do it anytime soon, with his lungs in such a bad place. So for now we need to live with our stoma and try an ostomy bag to cover it. Noah is still oxygen dependent almost all the time...still wheezy, very much like he was in Florida...which keeps me on edge...my bag is still packed and I continue to wait for it to escalate. No one seems too surprised though, considering all his lungs have been through this winter...apparently the adenovirus can leave long lasting issues. I am just praying that this lung damage is not permanent, and that we will be able to wean the oxygen soon. It just makes it even more difficult to get out of the house when we have an oxygen tank to drag around on top of everything else.

Brad is coming home tonight after a week away in San Diego for a conference. We will all be glad to have him back!

Wednesday, April 01, 2009


Ok, mother nature. Is this some kind of cruel April fools joke??? Another snowstorm...oh the joys of Manitoba weather. Spring can't come soon enough!! Hope you are enjoying California, Brad!

Noah is still hanging in there...very up and down...quite attached to his oxygen and ventolin...draining yucky brown crud from his NG tube...very little energy. Bloodwork tomorrow and then TPN clinic appointment on Monday. I am curious to see what his bloodwork looks like.

I have added more to Noah's wish trip, so be sure to check it out!