Pixie Dust

We recieved a showering of pixie dust yesterday...a package arrived from Meg...(it actually arrived on Wednesday, but everyone had to wait until Noah was feeling up to opening it!)

Ripping open the paper...Noah's favorite part!!

Despite not feeling so great, the gifts were definately a hit with Noah...(please ignore the snotty face!)

Kailyn showing off her loot...

Mr Serious and some of his loot...

We especially love the flashing Disney pins! They will be lots of fun to wear at the parks!!
And someone knows the way to my heart! A Tim's card!! Mmmmmmmmmmm!!! Can't wait to get myself a double/double, or maybe one of those new latte's I've been hearing about!! It was like Christmas here!! Meg, thank you so very much. Your generosity has blessed us in a big way.

Pneumonia

So yesterday turned into a crazy day. I took Noah in to the pediatrician, who took one listen to Noah's chest and sent us off to the ER. I had been hoping to avoid having to go that route, but off to the ER we went. His O2 sats were low when we got there so we started oxygen and he got 3 back to back ventolin/atrovent masks which seemed to help open up his chest. Did a chest xray, bloodwork, blood gas and cultures. His bloodwork all looked good, and the cultures are pending, but the chest xray showed a significant pneumonia on Noah's right side. Thankfully the ER attending was one of the docs who knows us pretty well. So after a few hours of observation, he left the decision up to me. We could admit him, do IV antibiotics and oxygen, or I could take him home, do antibiotics and continuous oxygen at home. Since his bloodwork and gas looked good, no fever, and Noah himself looked ok, I felt comfortable taking him home. I just couldn't bear the thought of another hospital stay when we've only been home less than 2 weeks.

So we are home...for now. Hopefully this is where we will stay. So thankful today for Noah's line which we can keep him hydrated with and for home oxygen. Starting to get worried about how we are going to make it through our trip with no medical issues. Praying that the magical healing Florida air will be just what Noah needs.

Got another package...will post pictures once things settle down here a bit!

A bit worried & Ears...

So I'm getting a bit worried again...

Noah's IV antibiotics to treat the e. coli ended on Friday.


Since then he has not looked great. His chest is cruddy, his nose is a constant fountain, he's been sucking back the ventolin...likely just a virus he's picked up, but with Noah...it is always worriesome. At least no fevers, and we can keep him well hydrated with his line, but those lungs worry me.


Started doing some packing this weekend of Noah's supplies...yes, we still have a month to go, but just preparing ahead, in case a hospital stay is in the near future. I have learned from our last trip, and I am hoping to be more organized this time. I made up bags for each TPN hookup/unhooking so that we will just be able to grab a bag when we need it and it will have all the supplies in one place. Hopefully this will save me the grief of searching through bags, looking for supplies each day. Of course, I can't pack the actual TPN or meds yet, and I still need to figure out all the other supplies that we will need. But it's a start, and I no longer feel quite so overwhelmed with the thought of packing for Noah.


I managed to get a shift in at work this weekend. It really is a nice break to go back...my own sort of respite I guess. And the extra money will come in handy for Disney as well!


Today was Noah's hearing tests and ENT...the hearing tests were a bit of an adventure since he was being his busy little self, so it was difficult to figure out what he was hearing and what he was not. He was definately hearing some from his left ear, which we already knew, but his right ear was questionable as to whether he hears anything from it. After much discussion with the ENT regarding ear tubes, we decided the best course of action right now was to do nothing. He would benefit from the tubes to drain the fluid and hopefully increase his hearing, but since we are not having ear infection/pain issues and he does hear some, it is just not worth the risk of another general anesthesia. So the new plan is to retest his hearing in 4 months and decide from there. If the tests aren't good, we will look into a hearing aid, rather than tubes, since his hearing loss may be more than what tubes could fix anyways.


With everything that has gone on in the past few weeks, after only being able to think in increments of hours in regards to Noah's life, it is difficult to think long term. When we lose this line, if we have no other answers and are forced to look at palliative care, then what is the point of worrying over hearing, speech etc. And yet, we just don't know what will happen, so we have no choice but to continue forging ahead with the more minor issues. So I am quite happy with the new plan in place and the non surgical options.

More Big Give!!

We've all been anxiously checking the mail each day. Yesterday there were 2 packages waiting in the mailbox...

Kailyn reading a special letter just for her...

Noah scratching his head, trying to figure out what is going on...

Inside the first package were beautiful bracelets for both Kailyn and I from Maroo. Kailyn modeling hers...

Joshua hoping this next package has something for him...

A cute pirate shirt for Joshua (notice his new gaping hole!)...

And an adorable Cinderella outfit for Kailyn. Twirling time...

And we just couldn't resist taking this picture. Kailyn's blanket made by Granny!! Can you tell she's a princess fan?? She's very thrilled to have a dress to match her blanket!

April, thank you so much!! These are both so nice and you did a fantastic job! Can't believe you apologized in your letter for your sewing skills. They look amazing!!

Maroo and April, thank you for blessing our family with some pixie dust and for making the kids feel so special today!

Ethanol

We are slowly settling in again...so much has changed with Noah's care, I'm still trying to get myself organized. Noah is doing well and has settled in easily this time. We have not ventured out with him yet, but Kailyn has been asking for a while to have me bring Noah in for show and tell. She talks about him lots, but the kids have many questions, so she wants to show them his tubes and pumps. So tomorrow morning I will bring him in to the school. Should be interesting!Some good news is that we have finally been able to start ethanol locks in Noah's central line! This is something that we first heard about at the Oley conference last June, but we couldn't convince the powers that be to try it until now. Noah triglycerides were starting to climb, so it looked like he needed a few hours off the TPN to give his liver a rest. And since we'd have a few hours off, we finally got the go ahead to try the ethanol. So each afternoon, we stop Noah's TPN, inject ethanol into his central line, leave it in for 4 hours, then pull the ethanol out and restart his TPN. The ethanol is supposed to sterilize the inside of his line and decrease line infections. There are some good studies out there with great results, so we are hopeful that this will make a difference. The only risk is that we may have issues with clots forming. Seems that there is never an easy answer, but we have to give it a try to hopefully extend the life of this line. And the bonus is that Noah gets 4 hours a day where he is free of pumps and able to just be a normal kid!!

Christmas & Big Give

Some pictures from Noah's Christmas yesterday...

After he found the bells in his stocking from Granny & Grandpa, he didn't need anything more...

We also had a package waiting for us when we got home! A couple of weeks back, I was contacted by a group of Disney fans on the internet, who do what they've named a "Big Give" to a family going on a wish trip to Disney. They make clothes for the kids and send other goodies too. I was touched that they had seen our story and wanted to do this for our family. I continue to be overwhelmed by the generosity and kindness we have been blessed with lately. We filled out a form with favorite characters, colors and measurements, and then began waiting for the packages to arrive. At first I was a bit hesitant, as this came at a time when a trip did not seem possible anymore, but I didn't want the kids to miss out on this fun. So when the first package arrived yesterday, it felt like we could finally begin to anticipate this together. I had to hold the kids back so I could get the camera...

Inside were puzzles and coloring books for each of the kids, as well as adorable fabric crayon holders...Minnie Mouse for Kailyn, Pirates for Joshua, and Pooh characters for Noah. Thank you so much Kim! These were a huge hit!!
Things are crazy right now...trying to settle in again...getting used to the many changes with Noah's care. We have someone finishing our basement right now too, so the whole house is in a bit of an uproar. It's going to take a while to get organized and feel at home again.

Day 29 - Home

We are home...

Noah looks better than he's looked in a very long time. We had Christmas for Noah tonight...we had been saving all his gifts here at home. He had a great time opening them and such fun just being together. It's going to take some time again to settle in to home life and all the changes with Noah's care. But we are home...so many times we thought we'd never be the five of us here again.

So much talk lately from our children about dying lately. They have been exposed to so much in the past weeks. A boy in our school passed away suddenly this week...grade 4...asthma attack. A very stark reminder of the fragility of this life and how so quickly it can be snatched away. Although we do not know this family, my heart is broken for them. Today, expecting the worst just weeks ago, we brought our son home, as this family, never expecting this week to be any different, is now burying their son. So many things that just will never make sense this side of heaven.

Thank you for all the prayers, coffee and food. So many of you have blessed our family.

Thankful for this precious gift of time...there are no other words...so very thankful...

Day 26

We were hoping for discharge tomorrow, but there are still too many loose ends to tie up in regards to oxgyen, home IV program etc.. So the new plan is for discharge on thursday. At least we have a plan! Yesterday, I was a bit worried Noah was getting sick again, (retching and diarrhea), but today is much better. Brad and the kids have not been well, so it is probably good that we are not home yet.

Cannot wait to be home to start obsessively planning for Noah's wish trip. We got word that we have flights booked to leave February 24th. Our doctors are aware, and they are in agreement that we need to take this trip. Noah needs his wish! I finally feel that we can start planning and talking about it again. Praying that we can keep him well enough to get him there. We SO need this time away together.

So glad we are able to share Noah's laughter with you all. From the silence of PICU to this...
what a gift.

Prayers Work

As you have read for the past couple weeks, we have placed our hope in our Lord Jesus Christ and once again he has been faithful. I have no doubt that it is due to the prayers of hundreds and in accordance with his will. Whether one believes in God or not, the truth remains that he is real and he is good. I have no doubt that Noah's life is exactly what God wants it to be.

Thank you to everyone for your prayers and support. As you can tell by Noah's video below, he is thankful too. He is a good reminder to me what is really important in life.

Brad

Day 24

Another good day...

Really very little to blog about...Noah continues to look well...better than we've seen him look in a very, very long time. Amazing what some good nutrition can do. The consult has been done to Toronto, and so now we wait to hear back from them. We are all hoping to do this through teleconferencing, rather than having to travel. We just really don't want to have to leave the family again and be in Toronto for an indefinate amount of time. But we will wait to see what they suggest.

Home TPN is in place for next week...just waiting on home IV program. Hopefully by the middle of the week we will be home!! With an end in sight, the days just seem to get longer! I am so itching to be out of here.

Day 22

A good day today...

Noah looks great...full of smiles and giggles for everyone, looking better than he has looked in a very long time...he had an absolute blast with music therapy...reminding me over and over and over what we have been fighting for these past few weeks. So very thankful...

The overnight oximetry went well, so Noah is off the CPAP and he will go home using 1 litre of oxygen for sleeping again. Started him back on a low dose of enoxyparin (blood thinner) so it's injections twice a day again. Although not the best thing for Noah with the risk of bleeding, however protecting the line from clots is the top priority. No more fevers and so far the 2nd set of blood cultures are negative. We should get final results tomorrow. ID's opinion is that this infection likely did not originate from his line, but rather from his gut (since it's a gut bug and he had all those bleeds), considering how quickly he has recovered from it. This is good news, as hopefully that means our line has not colonized itself with the e. coli. Although we will never know for sure, and the line is still at risk, so we will still be cautious and treat with IV antibiotics for a few weeks.

Discharge plans are in the works...hopefully everything will be in place for next week. These walls are closing in on us here, especially with Noah still in isolation. What would we do without our DVDs! (Cassidy, Noah is loving his new baby einstein DVDs, especially the part with the bugs...makes him giggle!!)

One Step Closer

One step closer today...finally out of the monitored bed this afternoon and back "home" (by home I mean CH5 of course!). Took us a while to convince everyone that Noah was ready to come off the monitors. He has sufficienty scared everyone this admission, so caution has been the name of the game here.

Never been so happy to be back here!!

The past few days have had their ups and downs. I didn't have access to the computer for a bit, which is the reason for the lack of updates. We'll start with Monday morning, our first morning out of PICU...Noah begins spiking fevers again...high fevers...septic looking fevers. Blood cultures were drawn, antibiotics started, and by noon, his temp had come down and he was looking quite good. I felt pretty confident at that point that this was probably just a new virus he'd picked up. Tuesday morning, we heard from the lab. His culture...our week old, brand new line...is already infected with a gram negative bug. Just found out this evening it is E.Coli. So very, very frustrating...seems we just can't catch a break this admission.

The good news is that he seems to be responding well to the antibiotics and looks quite good today. This gives me hope that we will be able to save this precious, precious line. But the awful reality, is that we just don't know right now if it can be completely cleared. Repeat cultures were drawn this morning, and so we wait, hope and pray that these will be negative. Everyone is on the same page, and we all agree that losing this line is just not an option. So we will agressively treat Noah with the line in place, taking our chances that it will be enough. We all know that time is of the essence now, and the plan is to get Noah home on TPN and IV antibiotics as soon as things can all be sorted out and put into place. I hate wasting precious days here in hospital. We are doing a trial tonight off the CPAP, and just on oxygen to help figure out Noah's requirements for home.

Home...all we want is to just get home.

We've Moved!!

PICU got suddenly very busy today, and so Noah got kicked out...a good thing really. He still needs a monitored bed and the CPAP for sleeping, and so we are on CH4 in a monitored room. Not quite "home" yet, but one step closer and at least I am able to sleep by his side tonight. Hopefully he won't need the monitoring too much longer. No more fevers, so it's been another good day.

PICU Day 16

A good day today...

Noah spent all of his awake time off CPAP, and just on nasal prongs for oxygen. I still don't like the way he works to breathe, but he is quite comfortable and certainly not in distress. He tires so quickly though...don't know what we would do without Treehouse and his Baby Noah to lie and watch all day. Had a bit of a scare this morning when he spiked a fever. Never a good thing for Noah, but especially worrisome with his central line. If he spikes again, we will have to draw a blood culture from the line. But I think he just wanted to wake me up this morning. The staff is being very cautious with him and are still worried about sending him to the ward. They have seen just how rapidly he can change. But we are making good progress and will hopefully head there soon.

PICU Day 15

Noah spent a few hours off the CPAP today, charming the nurses with his infectious smile. He still works quite hard to breathe while he is off, and tires very very quickly, but the improvements are slow and steady. Xrays show alot of chronic lung changes, so we may have to accept that some of this may be permanent lung changes. Noah's new line is working beautifully and the TPN is helping him gain back some of the weight he lost in the past month at home. It makes me confident that we have made the right decisions for Noah...he has proven that he is not ready to stop fighting either. Sometimes I wonder how many times we can be so lucky (although luck isn't really the right word)...is there a quota of miracles out there?? I certainly hope we haven't used them all up yet...we need an endless supply around here!

Looking forward to a quiet weekend here, and to the end of the holidays. Monday we should be able to put together a plan with everyone to get Noah back to the ward and one step closer to home.

Thank you all for your many prayers and comments. Thank you especially to Kailyn for your comments. I miss you too and can't wait to see you this weekend!

PICU Day 14

Finally...a quiet day with very little to blog about. We are seeing more and more of our Noah coming back to us. He is spending more time during the day off the CPAP, and is slowly gaining his energy back. He can sit up for a few minutes at a time now...of course, he is especially motivated when his Baby Noah animals are on the dvd player! We have had our first full day of no bleeding while off the Pentoprazole infusion! We are very slowly and cautiously attempting small amounts of GJ feeds (still doing full TPN as well). And he is gaining weight!

The newest plan is to wean Noah off the CPAP completely during the day (while awake) over the weekend, but continue use for sleeping. Then Monday it's time to regroup regarding his lung issues. The attending is thinking that perhaps continuing nighttime CPAP would be helpful, as it would allow Noah to conserve more calories while sleeping. As we can tell from the monitors, despite his last good sleep study, sleep apnea has become a big issue for Noah again. So perhaps not having oxygen at night the past few months has been contributing to his weight loss. Once the CPAP issue gets sorted out, and if he remains stable, he can be transferred to the ward!