PICU Day 13

Thank you all for "storming the heavens" for our Noah. Someone was listening...

Noah continually amazes us with his resilence, despite his frail, malnourished state. Everything about the surgery and post-op has gone so well. He was extubated this morning and went straight back to the CPAP with absolutely no difficulties. He even spent a short while off the CPAP this afternoon, sat up in bed, watched TV...shocking those who were just discussing end of life plans with us yesterday. Yep...that's our Noah. Another miracle to be where we are today.



The past couple of days Noah was having sinus arrythmias and bradycardias (his heart rate would drop in half and his blood pressure would sky rocket). Yesterday he had an ECHO and EKG done to assess heart function and everything looks ok. Today this too, seems to have stopped, and he has had no further episodes...no one has an explanation for what was causing them, but just something that we will continue to watch.

So where do we go from here??


Everyone is only thinking in short term plans right now...how to get Noah out of PICU and back on the ward...one step closer to home. There are too many unknowns to plan much further and many things need to be discussed and sorted out. Right now we have this precious line for much needed nutrition and blood products, and yet, we know that it was these precious lines that have caused so many complications, almost taking Noah's life in the past. And we also know that short of very extreme measures, this is the last line he will get. So I can only hope and pray that we have made the best decision we could have, given the alternatives.

The security of the line does give us the ability to focus on the other issues holding him here in PICU. The first plan of action is to get him off the CPAP...he will continue to have short trials throughout the day, until he can be completely weaned off. Still needing ventolin masks, but those too are slowly being weaned. And secondly, the bleeding has to be under control...he has had no bleeding the past 2 days, so we will try him off the Pentoprazole infusion again tomorrow and see how he does. The rest of the issues can be managed and sorted out on the ward.

Feels as if we have been here 13 weeks, rather than 13 days, but starting the new year with a renewed hope.



.

PICU Day 12

We have a line...

Noah went into surgery this evening. Everything went smoothly, and the surgeon was able to thread a line through the left internal jugular. The vein was scarred and takes some odd twists and turns, but it wasn't completely blocked off as we had feared. Noah is intubated now and heavily sedated tonight. We are so incredibly thankful...thankful to the surgeon who was willing to try...thankful to the PICU staff who have backed up our decisions, even when they didn't fully agree...thankful to our gentle heavenly Father for guiding us through this day. There is much to overcome yet, and with Noah's line history, this is by no means a solution...but we have bought ourselves some breathing room...and a whole lot of hope for a little more time with Noah.

PICU Day 11

A crummy day...I am emotionally spent. Things continue to look bleaker and no one here knows if we will ever get Noah well enough to make it out of PICU. It all feels quite surreal, and I hope to wake up and discover it was all just a bad nightmare.

Our peripheral IV is still there for now, and our crappy central line is still functional enough to get some TPN in. Noah was also switched back to the CPAP settings today. We are starting very tiny amounts of tube feeds, as Noah's gut may soon be all we have left for nutrition. Those are all the good things.

But Noah is in a bad place right now and we are backed up against a wall, with no good way out of here. He continues to ooze blood, (although it is slowing once again) and needed another transfusion this morning. With line access being such a huge issue, we had a team meeting this morning. Unfortunately, with the holidays, many of the people who know Noah are away, but we had to put some sort of plan in place. It was time to discuss end of life plans, and what heroic measures we want done to save Noah's life. We were asked if perhaps this is the time to stop things, make Noah comfortable and let him go. The major reason being that Noah has no good line access left. We knew eventually this would become a life/death issue for him. I just never thought it would be now. But we did a floroscopy study this afternoon, and discovered his major vessels on the right side are all either clotted or very scarred, as well as his femoral veins. The line he has right now is right up against major scar tissue, which is why it is flowing backwards. Unfortunately, the left side is still an unknown. It may be a possibility according to ultrasound yesterday, but his circulation paths are now so changed that there is no way to know without taking him to the OR.

After many discussions throughout the day, thankfully, the surgeon has left the decisions up to us, willing to do whatever we decide. We have agreed to send him to the OR tomorrow afternoon to attempt one last line insertion. I am not done fighting for him yet, and we think this is his best chance at getting over this major hurdle so he can be assessed by Toronto. We have said no to the more heroic measures of a thoracotomy for line access (an incision directly into the chest cavity) as this is a highly painful procedure, with major post op lung complications, and if survived, can lead to a lifetime of pain issues. But even this regular line insertion is filled with risks as well and there is no way to know if it will be successful. There are just no good answers here, and getting a line in will not get us out of the woods, it may only lead us further in, but I am praying that it will buy us more time to figure out a better plan. Praying for another miracle...

I am unable to look farther than one day at a time right now...to think further than that is completely overwhelming. One day at a time...

Thank you friends for the goodies you brought by today. You made a miserable birthday a little bit brighter.

PICU Day 10

I hardly know where to begin today...it all started around midnight...Noah dropped his O2 sats to the 60's, and his lungs were so tight, he was no longer moving air. The attending was called as it looked like he'd have to be intubated. While waiting for her to arrive, Noah got 9 backtoback ventolin masks with some hand ventolation, and finally his lungs began to open up again. So it was decided to try to hold off on intubating and put him on BIPAP to take over even more of the work of breathing. With the BIPAP he began to settle. He was also started on Atrovent to help with bronchospams . A couple of hours later, our precarious central line became problematic and we completely lost one lumen of his double lumen line. This meant that there was no where to run the Pentoprazole, so it was decided to stop it. About an hour later, Noah began actively bleeding again.

That brings us to the day...his hemoglobin dropped quickly and he recieved another transfusion. As the blood was running in, we noticed his central line leaking blood almost as fast as it was going in. After a multitude of pokes, a peripheral IV was finally found and we were able to at least get some of the blood in him and restart the Pentoprazole. We are still using the central line for TPN, but there is a constant leak of fluid from the site and we may lose to whole line at any time. This evening we again lost his peripheral IV...Pentoprazole had to be stopped again...he began bleeding again...finally got another IV established. Praying this IV will at least last the night! It's been a crazy whirlwind day of just trying to keep up with one issue after another.

So yes, Noah's lungs are still a big issue, but the even bigger issue tonight is line access. Right now, this central line is Noah's lifeline. We cannot afford to lose it...if we lose all access, there is no way Noah can survive this. Our surgeon is away, and the surgeon who is covering for her was in no hurry to make any big decisions on a Sunday night. They did do an ultrasound to see if Noah even has anywhere to put a new line, and they think he may have a place, but it was unclear as to how scarred it is and whether it truly is a usable spot. They likely won't know for sure without trying. But trying means another trip to the OR...another intubation... which means likely not being able to extubate him again anytime soon. Tomorrow, this all needs to be addressed and some tough decisions made...we are between a rock and a hard place once again, with no good answers.

In the midst of all this, the kids came home today. We brought their gifts to the hospital and had a little Christmas with them here. It was so good to see them again and Noah was excited to see them too. They even got a smile out of him, despite how tuckered out he was!

PICU Day 9

Still here...not much change. Still on CPAP and needing hourly ventolin masks. No one is suprised that this adenovirus is still playing havok on his asthmatic lungs. Apparently it can take a while to run it's course. But we are all surprised that he looked so good on Wednesday, and now we have backtracked. I figure Noah's good day on Christmas was his little gift to us! He's a very tired little guy today and is now using up so much energy just to breathe. Weight continues to drop and we are down to 13lbs 5oz (6.05kg).

The kids come home tomorrow...can't wait to see them!!

PICU Day 8

This morning the plan was to get Noah to the ward...but, once again, Noah showed them he wasn't ready. Seems he wants to settle in for a good long stay here! He started needing more ventolin again during the night, but this morning he looked good. He sat up for a few moments and we saw our first smile when we put on his Baby Noah video!! But as the day went on, his chest began sounding worse, he became very irritable, and had a really tough day, just struggling to breath. We were doing ventolin masks every 45 minutes, which helped for short periods, but he was getting very tuckered out. So late afternoon, he was put on CPAP (a mask which delivers continuous positive airway pressure) to help him out, in the hopes of avoiding another intubation. As soon as the CPAP went on, he began to settle. He is now resting very comfortably, too tired to even fight the mask. His sugars are now running low with his TPN, so no more worries about starting insulin. And the GI bleeding has stopped again. Just got to somehow get those lungs healthy.

It is skeleton staff right now on the wards for the holidays, and so we are thankful today that Noah is still where he needs to be, where staffing is good. As much as I want to be out of PICU...he is safe here on the monitors, with many people watching him closely.

And so we continue to sit tight and wait this out...

Touched By An Angel

Yes, two posts in one day...but this needs to be shared...

A few days before Noah went into hospital, someone I met on one of the boards that I frequent online, posted about what had happened in their hospital just recently... an angel standing guard outside the PICU. I did not want to post her personal story here, but I just discovered today that it has now made headline news. Amazing!

http://today.msnbc.msn.com/id/26184891/vp/18424824#28365352

Here is the post that I read a couple of days before our own PICU experience. Believe me, it will give you goosebumps...

"So many of you have heard me tell the story, but I wanted to pass it along anyway to those who didn't hear it and for those who wanted it in email.A couple of Wednesdays ago, I got an evening phone call from the pediatric ICU at Presbyterian Hospital, where I work as a child life specialist. Usually when they call at night, it means something bad has happened. This, however, was different. My coworker told me that the most amazing thing had just happened and she just had to call to tell me.We had a patient who has really grown up in and out of the hospital. All the staff knows her and her family. She had been in the Pediatric Intensive Care Unit (PICU) for about a month, and had been intubated - on life support. She was not doing well. The doctors had approached mom about taking her off life support the Saturday before. Mom was okay with it, and said that she'd been through so much and if was her time to go she wanted to honor that. So they had taken her off.It was Wednesday and she was still alive. Amazing. The doctors approached mom about taking off her oxygen mask. Mom was supportive, and began praying over her daughter. The mother of another young patient who was in the bed next to her began praying with her.The nurse practitioner went to the nurses station to chart that she had taken off the oxygen mask. While doing so, she looked up at the security monitor that videotapes the double doors leading into the PICU. It records anyone who may be waiting outside the doors to get in since it is a secure unit. She saw a man standing there, and it looked a little funny to her, so she decided to walk down the hall to open the double doors personally. When she opened them, no one was standing there.She walked back down to the nurses station to finish charting, assuming he had walked away, but saw him still standing there on the monitor. So she opened the doors with a button near the nurses station and leaned over to see him walk in, but no one was standing there.She pulled over another nurse and both stood staring at this man on the monitor and opening the doors to find no one there. The nurse practitioner leaned in closely to look at the man on the monitor and said, 'Oh my gosh. That's an angel. You can see his wings!' They said that the sun starting shining so brightly and the whole PICU was strangely filled with light. They said he was a tall man and you could see wings behind him.They pulled over all the staff of the PICU and the two praying mothers and everyone was staring at this man on the monitor and opening the doors to find no one there. Crying, everyone pulled out their camera phones to take pictures, but no one could get it to show up on their camera. The mother of the girl pulled out her camera phone and finally got a picture of the angel who was guarding the doors to the PICU. He turned out as a man of light. I have attached the picture from her phone.The girl was later discharged from the hospital to go home.A Miracle."

When I first read the post, I was moved to tears. But at the time, I did not know how much it would touch me. The night Noah went to the OR, as I sat and waited and prayed, that image carried me through. Tangible reassurance of a greater power in control. Closing my eyes, I could see the OR room filled with angels watching over Noah. He's got some pretty special ones working overtime these days!

The evening has gone well, and after restarting the continuous IV Pantoprazole infusion, the bleeding has stopped.

So This Is Christmas...

Christmas Day...a day I've actually been dreading since we knew we'd be spending it here. I've shed my tears for what could have been and what should have been today...and yet so thankful for what is...a quiet day with our son...a day to reflect on what truly matters.

We were hoping to be able to be back with our CH5 family on the ward for Christmas, but Noah is not ready. We are struggling with TPN issues and we may have to start insulin tonight to combat his high sugars. He also started bleeding again this afternoon...a slow, but persistant bleed. Blood has been brought in house for him in case we need it tonight, but for now, we watch and wait.

"Tears are falling, hearts are breaking

How we need to hear from God

You’ve been promised, we’ve been waiting

Welcome holy child

Welcome holy child

Hope that you don’t mind our manger

How I wish we would have known

But long awaited holy stranger

Make yourself at home

Please make yourself at home

Bring your peace into our violence

Bid our hungry souls be filled

World now breaking heavens silence

Welcome to our world

Welcome to our world

Fragile finger sent to heal us

Tender brow prepared for thorn

Tiny heart whose blood will save us

Unto us is born

Unto us is born

So wrap our injured flesh around you

Breathe our air and walk our sod

Rob our sin and make us holy

Perfect son of god

Perfect son of god

Welcome to our world”

Michael W. Smith

~~Blessings to you all this Christmas season~~

Merry Christmas Kailyn & Joshua!! We love you so very much!!

PICU Day 6 ~ Christmas Eve

Santa came to visit this morning with gifts. Noah managed to open his eyes for a moment to see him. No pulling on his beard today!
But we recieved the best gift this afternoon...Noah was extubated!!! It was time, and he has done very well all day, only requiring oxygen by nasal prongs. We are so blessed. If the night goes well, he may be able to go to the ward for Christmas day! He is still very weak and tired, but alert and awake for short periods after the sedation wore off.

Now that he is extubated, more and more of the bits and pieces of the happenings of Friday begin to come out. Many of the staff have commented as to how dire things looked in the OR, and over the weekend. They say he was very lucky...we know it was the hand of our gracious heavenly Father.

So thankful that He chose to spare our son's life once again.

It is Christmas eve and I miss the kids terribly...watching them put out the cookies for Santa...filling their stockings...anticipating the excitement of Christmas morning...it is a very lonely place here.

All I Want For Christmas...

Erin...words cannot express...thank you!

A wonderful day with leaps and bounds of progress...thank you God! Still trying to wrap my head around all that has happened, but I feel as if I can finally exhale today. We were able to wean completely off the IV ventolin and he is handling just the inhaled ventolin very well. We were also able to wean his vent settings...he is now doing the breathing, with the vent there just to give him some support. Huge steps forward...Noah is showing readiness to try breathing on his own, however, he is still so profoundly weak. The question being...does he have the strength yet, or will it be too tiring for him.


But the new goal...extubation for Christmas!!


TPN was finally started today for nutrition...potassium is still proving to be difficult to maintain, requiring multiple boluses...heartrate is still irratic. He has lost alot of the excess fluid and is looking more like Noah again. We miss him terribly...slowly we are seeing glimpses of our feisty boy. Can't wait to have him back.

So thankful...so very thankful...

this blog has been hijacked......

I have never snuck onto a blog before but I thought all you faithful Noah readers would like this little video......hopefully I don't get into trouble! This video was a joint effort between myself and Noah's cousins.
Enjoy, and grab the kleenix! (posted by erin, nichole's sis)

PICU Day 4

Another quiet day...overall a good day with baby step improvements. After continuous IV ventolin infusion and a ton of steroids, Noah's lungs are finally opening up and the ventilator is able to do it's job. He is spending alot of time coasting on the vent (allowing it to initiate his breaths for him), which is a good thing for him right now. Blood gases are improving and the plan is to try to wean down the IV ventolin overnight. His secretions came back growing Adenovirus, so we have an answer to the nasty culprit that sent Noah into this downward spiral.

He recieved another blood transfusion this morning, as his hemoglobin continues to drift down. He is still puffy, but getting rid of lots of excess fluid with the Lasix...all good things for those lungs. We started a teeny bit of pedialyte running through his gut, but his abdomen is hard and distended. It's no use in trying to feed him right now, so we are starting TPN to get some nutrition into him. Potassium is still a big issue, and he is needing crazy amounts in his IV maintenance fluids. His heartrate has been a bit irratic, but that may be due to our potassium jumping around so much.

I've allowed myself a bit of a pity party today over Christmas plans...looks like we are settling in to spend Christmas in the PICU. Yes, it's just another day, but still so hard to be here this time of year...listening to those around us planning their dinners and gatherings. Thankfully, our kids are quite happy where they are, even though it's not the Christmas they had anticipated...and Noah is with us...that is what's most important.

Once again, I am overwhelmed...so much love and prayers from so many...many of you who know us only through a computer screen. Please keep the prayers and comments coming...they are what sustains me in these long days.

Quiet

It's a quiet day today...we know how quickly things can change and so we relish the quiet. The whole PICU is quiet...the nurses spent the morning building an amazing gingerbread house. Many things to be thankful for...the bleeding has stopped and we are coming down on the GI bleed meds...his blood pressure is stable. The big concern is his lungs. He is full of secretions from the pneumonia, and his lungs are very wet from the excess fluid he has required (once again he is very swollen). But at the same time, he is very asthmatic with a tight, tight chest and lots of bronchospams, causing him to fight against the vent. The IV ventolin has not done much good. This makes him complicated to ventilate properly. His blood gases are still not good, but his O2 sats remain good. A very conservative approach is being taken right now in the hopes that waiting it out will be best. Right now he is sedated, but able to initiate his own breathing. If things don't improve, he will need to be fully paralyzed to allow the ventilator to take over completely while his lungs heal. But the concern is, since he is so very wasted, we may never be able to wean him off the vent if that route is taken. So for now, we sit tight and wait...

Many thanks to mom and dad who have taken the kids and are making sure they have some Christmas fun. I have not allowed myself to think much ahead to Christmas yet, although reminders of the season are all around us...for now it is just one hour at a time.

Thank you, Erin for the song you posted. The words mean so much to me...

LIttle is Much - Downhere

What is the measure of a life well-lived

If all I can offer seems too small to give

This is a song for the weaker, the poorer

And so-called failures

Little is much when God's in it

And no one can fathom the plans He holds

Little is much when God's in it

He changes the world with the seeds we sow

Little is much, little is much

Who feels tired and under-qualified

Who feels deserted, and hung out to dry

This is a song for the broken, the beat-up

And so-called losers

Consider a Kingdom in the smallest seed

Consider that giants fall to stones and slings

Consider a child in a manger

Consider the story isn't over

What can be done with what you still have

PICU Day 2

It has been an absolute whirlwind trip these past few days...

I will somehow try to put it all into words and fill in the gaps...

Thursday morning, Noah was still quite lethargic and I was worried about his hydration. So we headed in to the ER...Got there around 2pm, got an IV started, bloodwork done and some fluids going. He was draining some dark old "coffee grounds" blood from his g tube at the time. His lungs sounded ok...likely virus, but they decided to be safe and admit him for fluids as his potassium and sugars were low. While waiting to be moved to the ward, we lost the IV and it had to be removed. This was about 10pm. Getting another IV proved to be horrendous. We had every available expert come try, and finally 4 hours later, a PICU doc got one using ultrasound to guide her. His lungs started sounding worse, and a chest xray showed a right side pneumonia. We made it to the ward and about 2 hours later, we lost this IV. His viens are just SO fragile. There was no one left to try to get access, so we started his pedialyte, and prayed we could get some gut absorbtion to get him through to the morning.

We managed...and our wonderful nurse from PDU was able to get a scalp IV in the morning. His breathing continued to deteriorate throughout the morning, but with oxygen, he was holding his own. It was that afternoon that things began to fall apart...Noah developed a sudden massive GI bleed and we were rushed to the OR. The PICU doc estimated he lost his full blood volume...by the time we got to the OR, Noah was shocky, his lungs were failing and he literally looked like death. I have never been so afraid to send him into the OR and we knew he may not come out. It was a terrifying wait...our surgeon got a central line in, started blood, plasma and albumin. They also scoped him, but were unable to find a source for the bleeding. But with medication to decrease the bloodflow to the gut, they were able to get it under control. The bleed was likely caused by a combination of stress and malnutrition.

He is now in PICU...still on the ventilator...still really struggling. His blood gases are still poor...his chest is very tight and he is on a continuous IV ventolin infusion to try and open up those lungs. Still needing albumin and likely more blood...things are still critical. The road ahead will be long. But he is here...things could have gone so much worse yesterday. His angels were watching over him...he is here. For now, that is all that matters.

Update

Today was "one of those days". Nichole had taken Noah in Thursday at around noon. She was in the ER until 2:30 am trying to get a good IV Line. They were finally able to find one using ultrasound in his scalp. This was actually a good start to the day considering what was around the corner. Friday afternoon, Noah started have bright red blood show up in his GT Drain and also in his diaper. With the source of this internal bleeding unknown and also a poor access site he was rushed to the Operating Room. After 3 hours in the OR, he is now resting in PICU with a new central line, arterial line, blood infusion, intubated and on the ventilator. Believe it or not, this is a much better situation than it could have been today.

Hopefully both he and Nichole are able to rest well tonight.

Thank you to all those who have been praying for us, it is appreciated. This is a good reminder to all of us what is important and what really is not this Christmas Season.

Praise God!!

Brad

Clinic

TPN Clinic...bad news and maybe, possibly good...??

The bad...there will be no surgery happening anytime soon. Yes, I'm calling this bad...I was SO hoping we had found a problem we could fix!! But our surgeon is not convinced that she can do anything to help Noah. The possible malrotation that I was hoping would be the source of some issues, may only be the heaviness of the GJ tube weighing down his intestines, in which case, surgery would not help. To put it bluntly, she doesn't know if he could survive a major abdominal surgery, and to take that risk when we don't know if there will be any benefit is just not worth it. She also believes we have exhausted the TPN route as well and if we went that route again, he would not survive the line complications. We are at the end of what they can offer him right now. Difficult words to hear...

Which leads us to the possibly good news...it is time for a second opinion...new eyes to look at the situation. Our doctors are going to consult Toronto Sick Kids. At this point we will try to do a teleconference, rather than having to travel. Praying for some amazing new ideas to come out of this!!

To top off the day, Noah continues to struggle this evening. His lungs sounded ok at clinic, so likely a virus, but he is still febrile and lethargic. The question will be whether I can keep him hydrated with just his GJ tube while this virus runs it's course. His sugars keep dropping too, which I've been able to bring back up, but it makes me nervous to try and manage him like this at home.

Praying things look better in the morning...

Bugs!!

We have acquired a household of bugs here...Joshua is home with a stomach bug. (Started yesterday during their school Christmas concert. Poor guy threw up on stage! Very traumatic!) I am still trying to kick a nasty cough. And Noah has now gone to the other temperature extreme and started spiking fevers yesterday. So today is a pedialyte day which will hopefully keep him hydrated.

Off to TPN clinic this afternoon...Noah looks a mess. Praying he will kick this!

Treading Water

I am finding it difficult these days to answer the question "How is Noah doing?" Well, we are home, yes, but I feel as if we are just barely keeping our head above water at this point. The secretions have become progressively worse, despite increasing the glyco dose, but I am unsure whether this is cold related or feed related??? It's a full time job just getting rid of those constant secretions!!

The big concern right now though is this downward spiral we are on with his weight. Today is another loss at 6.37Kg (exactly 14lbs), so he is back to the weight he was a year ago. His body temperature runs low these days, likely because he has NO fat to keep him warm. And the absolutely FRIGID temperatures we have right now doesn't help. We dress him in layers and keep him in front of our fireplace most of the day. His energy level is not like it used to be and he spends much of his day lying on the floor (we are wearing out his Baby Noah DVD), with some energy bursts here and there. But he is not constantly on the go as he was this summer. I am worried that he has no reserve and we could get into very serious trouble if he continues to lose. Wednesday we have TPN clinic to reassess things.

Praying we can stay out for the holidays...

Our Boy is Famous!!

Takes a few minutes to load...

Blessings

We dressed up the kids and braved the mall to give Santa our wish lists. Couldn't get my boys to smile and Noah almost debearded Santa! I love the wonder of Christmas...watching the joy of children who still believe in the magic.

As we prepare for Christmas, I can't help but be reminded of how close we came this year...how this Christmas picture could have looked so different...so thankful for our complete family.

Blessed...we are so blessed.

Noah's Wish

More on Noah's wish...

We were first contacted by The Rainbow Society (another wish granting organization). However, after a brief conversation, I was told Noah did not qualify for a wish because he is unable to verbalize. I was shocked and disturbed at this policy and I hope that those who donate to this society understand how this foundation works. Of course, I wasn't going to give up so easily. Knowing that Noah is deserving of a wish, I contacted the Children's Wish Foundation, who have been absolutely wonderful, and with our doctor's approval, Noah immediately qualified.

The Children's Wish Foundation grants children with life-threatening illnesses one special wish...a travel wish, a celebrity wish, or an item. We've all had lots of fun thinking about what Noah's wish might be. Yes, we all had our own wish lists and I had a few tropical islands in mind!! But this is not our wish...Where would Noah be happiest?? And where would Kailyn & Joshua, (who deserve this wish just as much as Noah), be happiest??

Well, "The Happiest Place on Earth" of course!

So after hearing about a wonderful place in Orlando called Give Kids The World (a resort just for wish children and their families, complete with everything any child has ever dreamed of), we filled out Noah's wish request. His official wish is "A Trip To Disneyworld to see Tigger and the animals at Animal Kingdom". The kids have been bouncing off the walls with excitement.

We now wait for Noah's wish to be approved by the foundation, and then we can request travel dates. We'd love to go this winter if it can be arranged, especially while Noah has no central line, but with so many unknowns right now, I don't know when it will happen.

A blessing amist the appointments, disappointments and hospital stays.

http://www.gktw.org/pre/

Colds have hit the household in full force here. Praying Noah can fight his off.

Settling in...

Things are slowly settling into new routines here...

We started adding Polycose to his tube feed on Wednesday. He is still losing weight and so we continue to try and stuff more calories into our boy. He had a bad night of diarrhea Wednesday night, and was on the dry side Thursday morning, so we had to back off. 1 Tbsp of Polycose in his 24hr feed seems to be tolerable today. The goal is 4 Tbsp, so I will try increasing every couple of days. Bloodwork yesterday looked ok, alot of "borderline" stuff, but no major worries at the present. Still talk about surgery, but no definate plans. We do know that we need to get a bit of weight back on him if he is to go to the OR again.

With Christmas approaching, I'm nervous as to how the timing will play out, however most of the gifts are now bought, the tree is up and so I'm feeling better about things. Just getting anxious to hear something from our surgeon as I hate feeling "in limbo".

Some hospital pictures taken by my sister, Erin back in November, along with the first picture (love having a photographer in the family!!) Hope you don't mind I stole these from your blog...

Some good news...Noah has officially been granted a wish from the Children's Wish Foundation of Canada! Waiting to hear more...

Back Home

Noah had to be admitted yesterday because there was no radiologist to put in his tube until today. So we ran IV fluids overnight, and his tube went in this afternoon. It was a difficult placement this time, and once again, it is in a strange position (although different AGAIN from last time). The radiologist was stumped as to why his small bowel seems to be in a different position with each xray, but suggested possibly a malrotation. He showed me all the xrays over the past year, and they are all bizarry different. He did put some barium down the tube to make sure that it was passing through to the small intestines, and it did. We are still waiting for surgery to weigh in on this. There is talk of exploratory surgery to figure out his anatomy. Hating the thought of another possible hospital stay at this point.

Feels like we've been through the wringer today. Noah crashed on the living room floor as soon as we got home. My own bed is calling my name...

Just As We Were Settling In...

I am missing Noah's line today...

When I picked Noah up out of bed this morning, his GJ tube was completely out. Usually we would have just run fluids through his line until we could get an appointment with radiology on Monday to have it put back in. But we have no line...

Which means it's off to the ER for some fluids, and hopefully to find someone willing to put the tube back in on a Sunday. Otherwise we will be stuck there until tomorrow...

Dentist Visit

We saw Noah's pediatric dentist this morning. I was concerned about some dark spots in many of his teeth. They are just calcium spots and of no worry. He does have at least one tooth (top front) that will have to be pulled whenever his palate surgery is done. It is growing backwards in front of another tooth and doing no good. As for the grinding...well, his advice was to get myself a good bottle of scotch! There is some wear on his teeth, but overall, the grinding causes no harm.

After his appt, we stopped to pick up some stocking stuffers as I've been feeling the need to get prepared for Christmas while Noah is still at home. Noah very quickly began to meltdown, (these sleep issues make for an irritable boy) so not much was accomplished. With Kailyn & Joshua at Grandma & Grandpa's, hopefully I can get more done this weekend when we have some respite for Noah.

Medically, there is alot going on right now, and we may not be home as long as I had hoped. Life just doesn't seem to settle down around here. Because of a strange-looking xray on Monday when we were checking Noah's tube placement before discharge, some of our doctors have been reviewing Noah's previous abdominal scans/bariums. His bariums have all been normal, however the xrays from this year look different. They are thinking that Noah's anatomy looks unusual and changed from last year. Still waiting to hear more on what the plan is from here.

Happy Thanksgiving to our US friends!!

Settling In

I'm feeling a bit of post-inpatient blues...sounds strange to most of you I'm sure. Yes, we are content, and thankful to be through another crisis. But those of you who have "been there" know what I mean. The switch from one world to another can be tough, especially the long stays, after being isolated and in crisis mode for weeks. It takes me some time to emotionally work through all that has happened. Home is a good thing of course... It's just an adjustment time... for all of us.

Bedtime and naptime are the big adjustments for Noah. After being used to falling asleep by my side with the hospital action, he finds it very difficult to go to sleep here at home. Hoping to settle into some sort of routine again.

We have started using Glycopyrrolate (Robinul) twice a day for Noah's secretions and we've seen big changes. He still gets some secretions, so we may have to tweak the dose a bit, but he is no longer coughing and choking on them all evening as he had been. This is a huge improvement for him.

On Monday, Noah's weight was 6.7Kg (14lbs 12oz) on our home scale, so that is the weight we are working from. We have alot of ground to cover to get him back to his 7.2Kg weight before this last hospital stay. Wish I could fatten him up with some Christmas goodies!

Home

It is official this time...we are home!

A wee bit of weight gain today and bloodwork looked ok, so Noah has been officially kicked out. Hopefully we have found the right combination of saline flushes and extra potassium to keep him stable without a line. It is hard to believe we have come home without a central line. It all feels a bit surreal right now...no TPN to hook up...no fluids to run...no IV antibiotics... This will take some getting used to. Depending completely on his gut is still very frightening for me. Only time will tell if this can be a long term solution, but we will enjoy any time we get without a line to complicate our lives and give us a bit more freedom. This will give Noah's body time to completely heal and not be knocked down again in a few weeks with another line infection. Who would have thought a few months ago that this would even be possible?? Even a week ago I doubted that we would ever get Noah home without a line.

It is definately a day to celebrate God's goodness and faithfulness.

Halloween

Thought I'd post Noah's hospital Halloween pictures. Considering how crappy he was feeling that day, he still looks super cute! Unfortunately, Brad didn't take pictures of the other kids...sigh.

Thanks to our nurse, Anna, for the pictures!

Day 28 ~ Out On Pass!

I am writing this from the comfort of home. So thankful to be outside the confines of those hospital walls, even if just for the weekend.

Noah has a pass until early Monday morning, when we will go back for bloodwork/weight etc. His lytes have still been an issue, and I am praying the weekend goes well. We have increased the concentration of the saline flushes to help bring up his sodium and chloride, as yesterday they were down again. His potassium is now holding steady. The watery stools seem to have resolved, however, now he is draining more from his stomach, which worries me. It seems if we are either continuously losing electrolytes from one end or another. So this weekend will be the test to see if we can keep him hydrated and balanced at home. His weight is still an issue, and he is down again. But his energy level and mood has improved, and yesterday he was finally bum scooting down the hospital hallways!

Thank you to all who have been helping keep our freezer stocked. You have blessed us more than you will ever know!

Day 26

The "D" word is finally being discussed! The plan is for a weekend pass, and then if bloodwork looks good on Monday, then he will be discharged. Hooray!!

We are still struggling with weight and watery stools, but it looks as if they will be ongoing issues that we can work on at home. We are doing saline flushes into his GJ every 2 hours during the day and have added potassium to his tube feeds. His IV has been out for 24 hours now, and so far his electrolytes are looking good. So hopefully we have found the right combination of fluids and lytes to keep him stable without a line.

An ultrasound yesterday showed his liver and spleen are still enlarged, however no changes for the worse. His INR and PT (blood coagulation tests) are still high so we are treating with Vitamin K. These are all things that will be followed as outpatient. And no plans for a surgical jejunostomy (J-tube) anytime soon. More discussion as to the benefits of this needs to happen before any decision is made.

Hopefully the next update will be from home this weekend!

Day 23

The days continue to drag on here. No huge changes to write about. Still struggling with the feeds. The watery stools continue and we haven't been able to move up on the Neocate. At least the downward weight loss spiral seems to have stopped and he is settling in around 6.7kg. His energy level is still low (no weight bearing or bum scooting down the halls) and I really hope all that energy wasn't coming from his TPN. He seems to be having these intermittent pains, which I am assuming are gut related. Praying we can figure out a way to make him comfortable all the time and not just most of the time.

We are trying something new to get the essential fatty acids into Noah. Apparently, in some people, they can be absorbed through the skin in the same way that we absorb Vitamin D from the sun. So every evening, we will be lubing Noah up with 5mL of Sunflower oil (which is actually alot, when you try to rub that much oil into Noah's tiny body). It will be a few weeks of trial before we will know if this will make a difference or not, but if it does, what a simple solution this would be for part of Noah's nutritional needs.

The IV antibiotics finished yesterday and today we switched Noah's antifungal to GJ rather than IV. Still have to figure out a way to get all Noah's fluid requirements sorted out to be able to get rid of the IV completely and get him home.

Day 20

Yesterday was the G-tube trial and it was miserable. I was secretly hoping Noah would shock us all and tolerate stomach feeds, but I wasn't expecting it to go well. It was even worse than I had imagined, and he was absolutely in agony with retching, crying and choking on secretions. We had to stop after a couple of hours as his lungs started sounding crappy and the risk of aspiration was too high. Radiology put his GJ tube back in and we are back to where we began. At least we now have an answer as to what he can tolerate and we can cross that one off our list.

As far as where we go from here, I'm not exactly sure yet. We may be looking at another surgery, but that is still up for discussion. Noah still needs another few days of IV antibiotics and another week or so of the antifungal by IV, so no plans for home yet. He is also still having issues with the feeds. We are slowly going up on the Neocate, but the loose, watery stools are still happening, and as long as he has that, he requires the extra IV fluids and potassium to keep his lytes stable. He is looking good though, and was even able to go to playroom this morning for the first time this admission.

And so we continue to sit and wait this out, praying that this will all be worth it in the end and we will be able to go home with no central line, hopefully reducing our hospital admissions. So, although this admission seems incredibly long and never ending, I have to focus on the bigger picture here and pray that we are doing the best thing for Noah.

Day 18

Things are looking a bit brighter this morning. Yesterday we started adding a very small amount of Neocate into Noah's formula and he has tolerated it fairly well. Still having a few watery stools, but I am hopeful that it will settle. He is still fever free and starting to sit up and play for short periods. Seeing those beautiful smiles again makes my heart soar and I am so thankful that things seem to be progressing in the right direction.

The next step this week is to give the G-tube (stomach) feeding a try. The GJ tube holds Noah's pylorus open, causing lots of bile to back up into Noah's stomach which we continuously drain off. Without the central line for hydration, the concern is that we will continue to have electrolyte/dehydration issues with so much drainage coming from Noah's stomach. If we could eliminate this, that would be the ideal situation. So in the next couple of days, we will take out the GJ tube, put in a G tube and try some stomach feeds. I do not think that this will go well and I am concerned about retching and aspiration issues. But we haven't tried stomach feeds in a long time, so we need to give it a try to at least rule it out. If it doesn't go well, we may look at a surgical option, such as creating a separate stoma for a J-tube.

Day 15

It's hard to believe how slowly 2 weeks can pass, and it feels as if we've been inpatient for much longer. Still no specific end in sight. The gallium scan came back clear, which is good, but that means there is no good explanation for the fevers. However it has been almost 48 hrs now since the last fever spike, so praying we have seen the last of them. That is the good news.

Now for the bad...we tried adding a microlipid (fat source) to Noah's feeds yesterday, which I was so hopeful about, but it was miserable. Diarrhea and abdominal cramps all night last night made for a night of very little sleep for anyone. It was very obvious that his gut just won't accept this type of fat. By this morning he was looking dry from all the water loss stools, so he needed a couple of fluid boluses to get him back on track. So that brings us back to square one again. This coming week, we will try adding the Neocate again in an effort to get his fat requirement in. His weight continues to drop and I don't know how much more he is able to lose. It seems as there is almost nothing left to him, and his energy level is so low that sitting up for a few minutes is enough to wipe him out for the next couple of hours. He is almost a kilogram less than before this hospital stay, and it is so frustrating to watch him shed all those grams we worked so hard to gain. I get more and more concerned with how we are going to manage without our central line. 

Brad is doing night duty at the hospital tonight and I am looking forward to a decent night's sleep. Praying things will look better once I am more rested. 

Day 12

We are slowly starting to see glimpses of Noah again, as he is spending more time awake and starting to sit up for short periods of time. Fevers are still persisting, so a gallium scan is scheduled for tomorrow morning. Praying this will give us an answer as to what is going on. His blood cultures continue to come back negative and his platelets have returned to normal. GJ feeds are going well, except for an excessive amount of secretions. He is back to his full feeds, so now we are trying to push his gut further to get in the calories he was taking by the lipids in his line. In the next day or two we will try adding some fat to his feeds (what type of fat is still us for debate). Overall, we are heading in the right direction, but still lots of work to be done.

Leaning on our Heavenly Father for patience and daily strength.

Day 10

Day 10 today...it's been very long days. Noah's central line was removed on Thursday. The line actually broke that morning, so it was good timing that it came out. The line tip was sent for culture and came back growing pseudomonous. So antibiotics were restarted along with the antifungal. On Friday Noah recieved a blood transfusion for low hemoglobin, which has given him a nice boost. We did manage to dress him up in his Tigger costume for Halloween and the med students came with candy for all the kids in the evening. Of course, I had to help Noah with his candy!

He is tolerating is GJ feeds again, and we are almost back to his full feeds. However, he continues to spike fevers, usually a couple of times a day. Still waiting on the most recent blood cultures, but so far they are negative. The question is whether there may be another possible source of infection in his body. If the fevers don't stop soon, we will likely do a gallium scan. He is still requiring a bit of oxygen, but is slowly starting to look better and spending more periods awake. But he is still so far from his bright, energetic self. This slow recovery is unusual for him, but a fungal infection can be tough to beat.

For now it's a "wait and see" game. Wait and see what the fevers do...wait and see how the feeds go... There are still many unknowns and differing opinions, but the one thing we all agree on is that we need to try and keep Noah line free. The risks of an infection ending Noah's life is very high and right now, this risk outweighs the benefits of TPN. It's a frightening step, and no one can predict how it will turn out, but we have no choice but to try. The next plan of action is to try and figure out a way to get enough nutrition into Noah without having to put another line back in. He has been wasting away these past days and any fat he did have on his tiny body is gone. It's tough to fight without proper nutrition and this has taken quite a toll on him.

I feel like we are in between a rock and a hard place right now with no great solutions. Praying we can make the best choices to give Noah the best quality of life that we can.

I miss my Noah.

Yeast

It's official...Noah is once again fighting a yeast infection in his blood, the line likely being the culprit. He spent some time in a monitored bed as his blood pressures were drifting a bit too low, however, they have stabilized and he is back "home" to CH5. He is still retaining fluids and is relying on doses of Lasix to help him get rid of it. The fevers are still around and he is still so far from looking. So everyone is in agreement that this line needs to come out, and somehow we need to keep Noah line free as it has been one complication after another.

Tomorrow our surgeon will pull this line and we will try to do without one and use a peripheral IV to run his antifungal drug. We have started TPN basics today as he is still not tolerating any feeds, (no lipids as his liver is still enlarged). But once we lose this line, I am unsure of what we will do for nutrition until Noah's gut starts working again.

There is lots of talk...ideas floating around...everyone seems to have their own opinions on what is best and where to go from here. But as of now, there is no definate plan and things seem more complicated than ever. Praying for answers...

Monitoring

Noah is currently spending time on CH4 in a monitored bed. Preliminary tests have found a fungal infection (location yet to be determined) along with an enlarged liver and spleen. He is also retaining a lot of fluid which is not great either. Blood work does show some concerns as well.

Continue to pray for Nichole as she is spending her days advocating at the hospital. It is hard to believe that with all of the above problems, one ER doc was willing to send him home with a prescription for antibiotics (not a beneficial treatment, in fact a counter productive treatment for Noah's fungal infection). Thank goodness for Nichole willing to be there all the time and look out for him. Some may say it is over attentive, but obviously needed. Pray for energy and peace as it looks like the start of a longer stay again.

Brad

Going In...

Once again, mommy instinct is right. Noah started spiking fevers yesterday, he is swollen this morning, barely peeing, respiratory rate is up and it looks like maybe cellulitis around his gj tube stoma. Heading in...will update when I can.

TPN Clinic

Clinic was interesting today. Once again we discussed taking the plunge and trying G tube feeds. Seems that we are running into a bit of a brick wall with the GJ feeds (not being able to increase rate or concentration) and it is time to forge ahead and try something new. Low potassium is still an issue, likely from the output coming from his drain. If we could get rid of the constant drainage and be able to feed into his stomach, we could eliminate some issues. We've gotten ourselves into a "catch-22" with trying to fix issues by adding more things and complicating everything even more. So it is time to sit back and re-evaluate. It has been about 2 years since we've tried stomach feeding, so there is no way to know if he would tolerate it unless we take the plunge and give it a try again. This will likely have to be an in hospital trial. It scares me as there is always the risk of aspirations again and the terrible retching we had before. But perhaps he has developed enough to be able to do it now. The shape Noah is in right now though, I refuse to try it until he is looking better though.

We have started a potassium supplement to try and bring his potassium back up, and hopefully help him feel better. For now we are still home...

Still Hanging In...

We got Noah's GJ tube replaced yesterday and it went very smoothly. Also repeated his bloodwork again to keep an eye on that potassium. I didn't hear anything back about it, so I'm assuming that it's ok. But Noah is still not ok and I just dont know what is up. He doesn't play or smile like usual and he is still so very tired all the time. We are using ventolin regularly and so much suctioning!! TPN clinic tomorrow, so I can make my concerns known.

I also got a call from Joshua's teacher on Sunday. He has been identified as one of the kids in the class needing extra help learning how to read. So each day he will spend 40 minutes working with an EA to help him catch up to the rest of the class. I don't think he has any particular learning difficulty, rather, this is just another reminder of the sacrifices we have had to make. Unfortunately, Kailyn & Joshua get neglected in particular areas when we are in survival mode. I can't help but feel guilty, but also thankful that there are programs in place in the school to help. Praying that the Lord will protect them and that they will never grow up to resent all the time we have had to spend with Noah.

One of Those Weeks...

Yes, it's been one of those weeks...Noah continues to not be quite right. We got a call yesterday morning that his electrolytes from his bloodwork on Tuesday were wonky. His potassium and chloride were both low. So it was off to clinic yesterday to have the bloodwork redone. The new lytes showed some improvement, which means hopefully they are correcting themselves, so we are holding off on supplementing with potassium for now. That may explain why he has been so incredibly tired all week. Alot of retching and increased output from his stomach too.

We also got a call today that radiology is concerned about this temporary tube that was put in this week. The right size was not available, so this tube was cut to fit him until his new tube could be ordered in, which has it's risks. So now that the new tube has arrived, we have an appointment on Monday with radiology to change his tube again. Not looking forward to that.

Hopefully the weekend is uneventful!

Thanksgiving

Thanksgiving this year was very low key for us and I ended up working most of the weekend. Monday I took the kids to see the new Disney movie "Wall-E", which was super cute. We left Noah with Doris, but right before we left, the balloon on Noah's GJ tube broke and the whole thing came out. So we ran fluids overnight to avoid going to the ER on Thanksgiving, and then yesterday, after physiotherapy, it was off to PDU for his monthly TPN bloodwork and to radiology for a new tube. It took nearly an hour and a half to get this one in. For some odd reason, they just couldn't get it threaded out of his stomach. Noah was so exhausted from fighting that about halfway through he actually fell asleep and slept through most of the rest of it. What a blessing this was, as it is always very uncomfortable for him.

Today he looks very unwell, though. I'm not sure what is going on, as he has no fever. But he has basically been sleeping since yesterday afternoon. And the dark green bile has started draining with alot of retching. Not good signs...

Just OK

Things around here have been just "ok". Noah hasn't looked great since he came home and has been so tired, but he's holding his own, and no fevers, so we continue to wait and see what he does. He has been struggling with SO many secretions in the evenings lately, and we are using Ventolin daily right now. Hopefully things will settle down and I will feel confident enough to unpack my bags. But it's the start of the "germy" season now, which is never a good thing.

No big plans for this Thanksgiving weekend and I am glad we are planning to stick close to home. I'm planning to pick up a shift, and hopefully we can do some family things as well. So it should be a quiet weekend with some time for reflection. We have so much to be thankful for this year.

Home

Home!! Definately one of our quickest admissions ever! Blood cultures came back negative, meaning no line infection!! ID kept him on IV antibiotics until the 72 hour mark, just to be sure we had nothing slow growing, but all looks well and his line is still safe. Everyone was quite stunned that nothing grew, as it is so rare we get a negative culture when he is sick. So we are chalking this up to something viral that threw him for a bit of a loop. After a couple of days of full TPN, he is back up to his normal tubefeed/lipids and doing well. No IV antibiotics to go home with, which is a bit odd for us, so praying that we can keep him home!

Hospital Update

Noah was admitted on Thursday, as I suspected. Cultures were done and all the big gun antibiotics were started to cover him for anything. The good news is that after getting Noah's fluids sorted out, other than being a bit puffy, he is looking good and hasn't had a fever since Thursday evening. We are also approaching the 48 hour mark this afternoon, and so far Noah's cultures are still negative! We are all suprised that this may not be his line, but I won't believe it until those final results come back. So hopefully this may be just a virus after all, which means this could turn out to be a short stay. I am hoping to get some GJ feeds restarted today and we will see if he will tolerate that.

It's the little things that are beyond my control here that get to me the most, like not getting TPN for a second night because someone forgot to fax the orders to pharmacy. I so hate being at the mercy of the system.

Packing Up

I have spent the evening packing up, as I am 99% certain we are headed inpatient. Hoping to hold off until the morning, rather than having to sit in the ER all night. Noah is spiking fevers and his gut has shut down. He is miserable...I am miserable. Praying for strength for all of us to get through the next few days. Praying that this is a virus, and not his line...

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.