Lines!!!

It has been a very frustrating few days. It seems that Noah thinks New Years is overrated, and prefers to spend them in hospital. On Thursday, Noah managed to pull out his GJ tube, balloon and all. He became so frantic with pain and got a good yank on his central line. There was a weak spot in the line, and with that yank he managed to put a hole in it. Of course, this all happens when we are 3 hours away from the hospital out at Brad's parents place. So we headed back to the city. By the time we got Noah to the ER, he looked terrible. His temp was 38.5C, he was beginning to have some respiratory distress and his blood sugar had plummeted to a frightening 1.6. Noah was given a ventolin mask and an IV was quickly started to rehydrate him and get some sugar into him. He started looking much better after that. Blood cultures were also sent and he was started on IV antibiotics in case he had developed another infection. Because of the worry of IV access and second IV was started as a backup in his scalp. Poor guy now has a really bad shave job on one side of his head!

By morning, yesterday, we had already lost both IV's and the search for a central line repair kit began. Apparently the line Noah has is an obscure size, so no one in Winnipeg has a repair kit the right size. Two were found in Canada and are being flown in to Children's Hospital here. But until someone could try to repair his line, Noah was in dire need of IV access. So yesterday he was taken to the OR and our surgeon inserted a PICC (peripherally inserted central catheter) in his right arm. This will get us through until we get the line sorted out. We thought he may have to go to PICU overnight, but Noah did great in recovery room and was able to go back to the ward yesterday evening. He also had a new GJ tube inserted yesterday by radiology. Needless to say, when we finally got back to his room we were both exhausted. Noah slept 17 hours straight, barely batting an eye when the nurses bugged him!

And what does the little monkey decide to do today? He pulls out his GJ tube once again!! So this afternoon it was back to floroscopy to have the tube reinserted one more time! And as we were there, his central line completely fell apart into 2 pieces. It has been beyond frustrating and one of the rare times I have actually felt like just giving up. And yet, somehow, by the grace of God, we find the strength to get through each hour of each day. We pick ourselves up and move on to the next hurdle. Now it is just a waiting game, as we wait for the repair kit to arrive. It was supposed to come today, but we are still waiting. So we are praying...praying that the kit arrives...praying that the line will be repairable...praying that we will be able to get the line unclotted...praying for negative cultures...praying that this whole mess can be sorted out quickly.

The good news... Noah's Ampho is DONE!!!

Thanks for Christmas

Thanks to all of those who prayed that Noah could stay out of the hospital over Christmas. We had a great time with family and friends. Christmas is now over and so is Noah's escape from the hospital. He pulled out his GJ Tube today and Nichole also discovered a small crack in his central line. Either of these would have earned him a return trip to the hospital, but Noah managed to accomplish both on the same day. May as well fix them during one visit rather than two. Although frustrating to have to return to the hospital routine, we are grateful for the opportunity to have Christmas on the outside.

Nichole will spend her birthday in the hospital for the second year in a row, but we are just happy for the blessings we do have. Please continue to pray for us and enjoy the blessings we all have each day.

Brad

Santa

We braved the mall on Monday evening to take the kids to see Santa. I thought Noah might freak out, but he was thrilled and, of course, tried to grab his glasses. He did manage to get a nice handful of Santa's beard and I had to pry Noah's hand loose, just avoiding a major catastrophe!! The Christmas countdown is on and the kids can hardly wait!! Just praying that Noah will stay relatively healthy. He's still got a cold brewing with the odd low fever. Seems to be his "norm" these days.

Noah's appointment Monday morning went well. All seems relatively stable right now. We are holding his feeds at 26cc/hr, along with the supplemental lipids. We are still needing to add the extra potassium and sodium chloride into his Tolerex to balance his electrolytes. He will have his bloodwork repeated again on Thursday. He has stopped gaining weight, but he's been maintaining since we got home at 15lbs 12oz (7150gms). Hopefully soon we will be able to work the feeds up again and start nudging up his weight.

The Ampho is still a miserable experience everytime, but we are counting down the treatments. Only 5 more to go!!

Mattea Joy

On December 5th, our good friends Kim & Ernie had their 4th baby. After 3 boys, they now have their baby girl. Now that both Noah and Mattea are out of hospital, we were able to get together last night. Kailyn is especially excited to have another girl around.
What a sweetheart!

COLD!!!

Minus 40 today with the wind chill! And yet, we have this amazing sunshine sparkling on the new fallen snow. Although cold, Manitoba really is beautiful in the winter! Looking forward to a white Christmas!
Noah is doing well, other than his usual upper respiratory stuff. We premedicated before the Ampho today and it went a bit better. Still miserable, but at least his temp didn't climp quite so high. He WAS up to his full tube feed rate (33mL/hr), but the last few days we have been having to decrease it, as he is losing too much bile through his gtube drain. So we are at 26mL/hr now and his gut seems to be settling out. So we will sit tight at this rate for now. If we have to go down anymore on his rate, we will have to restart the basics TPN. We'll see what his tummy decides to do over the next few days. Noah had bloodwork and TPN clinic yesterday and despite all this, his electrolytes aren't looking too bad. His kidneys are also holding their own. He is scheduled for bloodwork again on Monday to continue to watch things closely with his gut not behaving quite right.
The good news is that yesterday Noah got his portable Intermate to run his D5W during the day. It looks like a baby bottle attached to him. So with that and his portable feeding pump, he is now pole free during the daytime!! It makes life a whole lot easier! Despite the cold, today I was able to take him out to Superstore for the first time in a long time! He loved the outing!!

Can I Actually Unpack???

Other than some cruddy cold symptoms, Noah has stopped having the low grade fevers, so it looks like I may actually be able to unpack some bags for a while. His last day of antibiotics is today, so we will see what happens. We will restart the oral Septra tomorrow. However, again today he had a reaction to the Amphotericin with screaming, spiking fever, rigors and mottling. I talked to the pharmacist today, who suggested that we try premedicating with Tylenol and Benadryl before the next dose on Friday. Hopefully that will help his comfort level. He still has 2 weeks of the Ampho left to go. Tomorrow he will have all his bloodwork done and we have TPN clinic as well, so we will see how his electrolytes and his kidneys are doing with all of this.

In the midst of all this, I am trying to get our Christmas preparations done, so things are quite busy. Can't complain though...how wonderful it is to just be home and sit down in front of the computer with a cup of coffee...to tuck the kids in bed at night... to sleep in my own bed!! A huge thank you to all of you who have provided us with meals and goodies. You don't know what a lifesaver that has been!

I've added a couple of pictures of Noah in hospital with his home care nurses, Doris and Nicole, who we love! I don't know what we'd do without them!!

Officially Home...For Now

Well, Noah was looking well this morning, just running his usual low grade fever (38C) that he's had all weekend, so he was officially discharged over the phone. 3 hours later, what does he decide to do?? He spikes to 39.5C and has been sleeping all day. I was running his Amphoterrible at the time, so I'm hoping it was just a bit of a reaction, although he hasn't had a problem with the Ampho for a while now. So now we are just sitting tight, waiting to see what he will do. We did manage to get the Christmas tree up yesterday, and I have done some internet Christmas shopping. But there is still so much we want to do in the next couple of weeks. So I'm just holding my breath and praying that we will not have to go back in. What's even worse is if we had gone back this morning, we could have just gone straight back to his bed on the ward. But if we go in now, we have to go through the ER again. Uggg!!
The good news is that Noah is now completely off the TPN basics!! His tubefeed is now running at 30mL/hr and he is tolerating it quite well. So now he is just on the TPN lipids that run over 10 hours at night to get in his fat requirements. Our surgeon has decided to try keeping his central line running all the time with D5W (dextrose and water solution) rather than locking it with Heparin when he is not on the lipids to hopefully prevent clots from forming. So right now he is hooked to the pole and pumps 24hrs/day, but soon we will have a portable Infusemate to use during the day so that he will be more portable.

Home On Pass

Noah is out of the hospital this weekend. He hasn't been officially discharged because he is still spiking fevers. He is on antibiotics and the antifungal still, so he is well covered. His latest blood cultures are negative. Everyone is hoping this is just a virus. It felt strange taking him home when he is still not well, and I'm still quite worried, but since they weren't doing anything for him that we couldn't do at home, we decided to try it and see what he does. If he is still spiking on Monday, we will have to go back in and they will draw new cultures and perhaps broaden his antibiotic coverage. But if all his well by Monday, then he will be officially discharged.

Who Mentioned the "H" Word??

OK, someone around here must have mentioned the "h" word to Noah!! I think he does this every single time we start making plans to go home!! He has started spiking fevers again last night and all day today. He's been pretty miserable and not sleeping much at nights. His nose is very cruddy and so hopefully it is just a virus. But we did new blood cultures this morning, so again we wait...praying that our line is ok!! If the cultures come back negative and Noah's fevers settle, then the plan is for discharge on Friday. We are still tying up all the loose ends here. The tube feeds are going pretty well and Noah is already up to 19mL/hour. The goal is 33, so we aren't that far away. If we can get there, then we can get rid of the TPN basics, and just run lipids through his central line. So far the Tolerex is living up to it's name!!

Day 32

Things are looking pretty good here. Noah did have a fever spike on Saturday, but since then he's been stable again, so hopefully it was nothing. Things are in the works to try and spring Noah out of here hopefully by the end of this next week. We started some continuous tube feeds yesterday with a formula called Tolerex. We tried this formula about a year ago, and it went well until we tried adding the oil component. So we decided to try the formula again without the oil, the goal being to get rid of his basics (the sugar part of his TPN) and just run lipids through his central line. This would hopefully put him at lower risk of developing line infections if we don't have glucose running through his line. So far he is up to 9mLs an hour through his GJ tube and he's having a bit more retching, but overall, tolerating it not too badly.

Tomorrow Noah will also be able to start recieving his Ampho 3 times a week rather than everyday. If his electrolytes remain stable with this change then we should be able to get him on the home IV program and finish the ampho and antibiotics at home. At the very least, Noah should be able to start getting home on passes in the next few days.

Kailyn & Joshua spent the day at the hospital yesterday and had a great time running endlessly in the hospital tunnels. They spent over an hour running in circles. I could barely drag them back to Noah's room! Who knew how much entertainment hospital tunnels could provide!

Again, thank you to all who have dropped food off both at the hospital and at home. We appreciate it so much! And thank you all for your continued prayers. Another friend of ours from my TPN support group has passed away this week. Please keep Zach's family in your prayers as well. http://www.caringbridge.org/wi/zachsam/

Day 28

Noah's fevers have stopped and he is looking very well. He certainly looks like he shouldn't be here anymore. However, his electrolytes are still an issue, and we continue to make small changes each day in the hopes that soon he will be stable enough to finish off his treatment at home. He is getting quite bored here and wants to be entertained all the time, so we are getting to the playroom and spending lots of time wandering the halls. All good signs that hopefully home is not too far away! We need to get out of here before Noah catches something new! Thanks for all the continued prayers and for the encouraging comments. We appreciate it so much!!

2 Steps Forward, 1 Step Back...

Noah has been spiking fevers again the past couple of days. So far his latest blood cultures are negative, so we are not sure what is going on. It is suspected that these fever spikes may be coming from his bone infections. If that is the case, then we just need to carry on with what we are doing. He has now completed 2 weeks of Ampho and antibiotics, and he has 4 more weeks to go. We are still unsure as to whether we will be able to get Noah stable enough to finish out the treatment at home, although his electrolytes are looking better the past couple of days. Noah's chest is much better and he is off the oxygen during the day now. We are still doing hypertonic saline masks 3 times a day which really helps loosen up the mucous in his lungs.

We are so tired of hospital life and feeling pretty frustrated these days. Thankfully Kailyn & Joshua were able to go to Mom & Dad's for the long weekend. Brad is at the hospital tonight, so I am able to sleep in my own bed tonight. How wonderful it is to be at home, even if it is only for a few hours. When I drove up to our house today, I saw the snowmen that the kids built this past week when we had our first good snowfall. It brought tears to my eyes...a reminder of all the simple things I am missing out on at home.

Day 20

Not much to update these days. Noah is doing well and we are just waiting it out here. His bloodwork was sent yesterday to confirm the latest diagnosis. The Ampho continues to deplete Noah's potassium levels and so he continues to need daily potassium infusions. The latest we have heard is that Noah will need a total of 6-8 weeks of Ampho. We are hoping that if we can ever get him stable on the Ampho, that we could finish some of it as an outpatient, however we don't know how long that may take. So for now we just continue to put in our time here and try to be patient.

More Rough News

Noah is doing much better today. Still no more fevers, his bronchiolitis is improving and today he was actually sitting up and playing in his crib. His platelets are beginning to come up on their own. His hemoglobin is still low, but no longer dropping. We are having a hard time keeping enough potassium in his body, as the Ampho B has been depleting his body of potassium, so he continues to get potassium boluses. Still no plan on how long we need to keep him on the Ampho, and so we continue to take it one day at a time.

However, we recieved some difficult news yesterday from the Metabolics doctor. They have diagnosed Noah with a metabolic disease, based on a metabolic workup that was done. The final bloodtest to confirm the diagnoses will take a couple of weeks, and so we won't know for sure for a while, but the doctors are quite certain from the high level of MPS found in Noah's urine that he has Sanfilippo Syndrome (MPS Type IIID). We are only just learning what this means, but basically Noah's body is missing an essential enzyme that breaks down a complex body sugar called heparan sulfate. The sugar slowly builds up in the cells over time, causing neurological regression and death usually in the teen years. It is a degenerative brain disease with no cure. So even if Noah is able to fight through all the health problems his chromosome deletion has caused and even if through hard work he learns to walk, talk and eat, there is this disease lurking in the background waiting to take it all away. This is so discouraging and just so very sad. I'm pretty overwhelmed by it all right now and it is so hard to try to look at the short term and not think too far ahead. Sometimes I think it's better not to know. And so I must ask "why God?". Does Noah not have enough to deal with? Does he really need a double whammy? It seems that we just manage to make it through a crisis, when another one is right in front of us. I know I will never understand these things and the future looks even more frightening right now.

No Fever!

We've made it 24 hours now with no fever spikes, and Noah's latest blood cultures are still negative! All good news! However, Noah seems to have picked up something new here. Lots of coughing and wheezing today, and needing ventolin masks every couple of hours. The chest xray from today didn't show any new change from his last one, so likely a virus. Between that and the hours on the Ampho (which today gave him a crazy rash), he doesn't get much happy time. He did make it to music time on the ward though, which is always a highlight for him!

The bone scan results are back, and it looks like osteomyelitis again. The infection has seeded in 2 places: one of Noah's lower ribs, and his T10 vertebrae. This doesn't really change to much as far as treatment, except perhaps how long ID decides we need to treat for. Noah's platelets have draopped again today and he's been having nosebleeds. His hemoglobin is also back on its way down. But for now, we are still holding off on more transfusions. Hopefully his body with begin to rebuild once this Ampho really starts taking effect. His kidneys are looking ok, and we are doing what we can do with extra fluids and sodium to protect them. ID is still quite concerned with the combination of drugs he is on, but they are undecided about how many more days of Ampho B we will do.

We've also come up with a new plan regarding Noah's line care. He now has his own protocol written up in his chart. No more alcohol swabs, but rather chlorhexidine on his line. An each time his line is accessed at all, the nurses have to glove, gown and mask, and use sterile technique. It may seem a bit extreme and it makes a whole lot more work, but we are hoping to prevent any new hospital bugs from making their home in Noah's line.

Hospital Update

Things have been up and down here with not alot of change. Noah is still spiking fevers, although today he only had one spike, so that's an improvement. He is in a very precarious situation right now. Having yeast growing in his bloodstream is very dangerous, and very hard to clear. But it was almost inevitable though, after all the antibiotics Noah had been on. We have 2 services with completely differing opinions right now. ID (Infectious Diseases) wants Noah's line out. And our surgeon refuses to pull the line. She is not convinced that pulling the line out would help, since we already have an infected clot and possibly a bone infection (still waiting on the final bone scan results). And right now, because of the remaining clots, Noah has only 1 site left to put a line back in. So it is critical that we try and save this line. There is no right answer here, and either way, we may lose this battle. And so it really is a waiting game at this point to see what Noah's body will do and we continue to reassess the line situation daily.

Noah started the Ampho B (antifungal) early Saturday morning. It's nasty stuff that takes 5-6 hours once a day to be infused. It makes Noah itchy, gives him a low temp and basically just makes him miserable. So far his kidneys are handling it ok and they are being watched closely. His platelets and hemoglobin have been dropping and he's been requiring more oxygen, so yesterday evening he recieved a blood transfusion. His hemoglobin is looking better today, however his platelets continue to drop, so he may need another one in the next day or two.

Thank you for all your thoughts and prayers. Please continue to pray for wisdom to make the best decisions for Noah.

Yeast

Things just aren't improving here. The line tip from the old line that was sent for culture came back growing Staph & Yeast. And now Noah's latest peripheral and new line blood cultures are also growing yeast. The lab is still trying to identify what type of yeast. This is very dangerous for Noah and yeast is difficult to treat. He continues to spike fevers as all these antibiotics aren't touching the yeast. So our brand new line is in jeopardy. ID wanted to pull the line tonight, however, our surgeon is out of town until the morning, so we decided to wait until she is back tomorrow before making any decisions. He had another bone scan done today to see if the yeast has seeded anywhere else. No results on that yet.

Noah will be started on Amphotericin (an antifungal medication), however the drug is very very harsh and can have bad side effects, including toxicity to the kidneys. He is at even greater risk as he still needs the antibiotics (Vanco & Gent) to cover the Strep bugs. These alone are hard on the kidneys. However, we have no other options at this point.

More Fevers

Noah had a pretty good day yesterday, but today has been spiking fevers once again, with his brand new line! His last cultures showed 2 different Strep bugs growing. Today we drew new cultures, so once again we wait for results. Until we can figure out what is going on, ID has added a third antibiotic (Vanc, Gent & Piperacillin). He is still needing the extra oxygen and is getting chest physio 3 times a day. His blood pressure has stabalized and platelets are coming back up to normal. The ECHO that was done in PICU showed another new clot in his right atrium.

Hoping the fevers are just viral. When his fever is down, he is actually in pretty good spirits despite it all! Thanks for all your prayers, visits and food!!

On The Road To Recovery

Noah is doing much better today. Surgery went well on Saturday and he now has a new line tunnelled into his left external jugular. He began to improve dramatically after his "sick" line was removed. We are still waiting the final culture results, but it looks like he is growing a Strep type bug this time. Yesterday he was going to be moved out of PICU, but he began to have some respiratory difficulties in the afternoon. A chest x-ray showed a small atelectasis (lung collapse) in his right lower lobe and his lungs were "wet" from all the fluid boluses he recieved during his rescuscitation. After some Lasix to get rid of the extra fluid, today he looks better. His respiratory rate is still high and he is still needed extra oxygen, but he was able to be moved out of PICU today and back on to the ward. He really gave me a scare this time and I am so thankful to see him looking improved. Praying that things continue to go in the right direction here. Thankfully Brad is back from Florida tomorrow!!

PICU

Hi. Just a quick update. Noah was admitted Thursday morning with line sepsis. He started going into respiratory failure on the ward yesterday morning. The rapid response team was called and he was taken to PICU. We thought we'd have to intubate, but with lots of rescuing with fluids and O2 he has somewhat settled, although is still spiking fevers on antibiotics, so he is going to the OR this afternoon for a line change. Hoping to see improvements after that.

Starting November in Hospital

This is Brad posting from FL. Nichole had to take Noah into the hospital yesterday due to difficulty breathing and fevers. He was also having difficulty maintaining a steady blood pressure. With fluid treatments, they have him stabilized and await the results from blood cultures to know if it is a bacterial infection or a virus.

Please pray that this will be a short stay for Noah and Nichole.

Halloween Fun

A few pictures of our Halloween night. No, Noah didn't get to go trick or treating, he stayed behind with Doris, our home care nurse. But we did have to get him dressed up to snap a couple of pictures!

Rainbow

We have made it through a tough week here at home, each day expecting that we would have to take Noah in and not knowing how things were going to go. The ups and downs are so difficult and I find it even worse than if he would just get sick quickly, get admitted and get it over with! How crazy that sounds, but living in this waiting with our bags packed is just as awful. However, it looks like we may have actually waited this thing out! The Septra must be doing something, because Noah is much improved since yesterday. Still has a bit of a nasty cough and I'm wondering if perhaps this may have been RSV he's been fighting or maybe a viral pneumonia. But whatever it is or was, things are finally looking up here and I think we can actually see the rainbow peeking out of this lastest storm! I may even be able to unpack today! His stoma sight is looking really bad lately too because of all the coughing and extra drainage. So we are stopping his tube feeds for now and will reassess next week as to whether we will start them again.

Noah spent most of the week sleeping on the living room floor and the kitten rarely left his side!

Kailyn & Joshua are really looking forward to Halloween so I am so thankful that it looks like I will be here with them tomorrow. Brad is leaving for a conference in Florida tomorrow as well, so my mom is coming to be my backup help! Oh how I wish Noah was stable enough that we could go with him! Hopefully we have a quiet week around here while he is gone.

We did manage to take the kids to Boo at the Zoo on Thursday. It was a beautiful night and everyone oogled over Noah. Although as you can see from the pictures, he didn't look so great. He was quite fascinated by it all though!

Bring The Rain

Seems we are in a holding pattern here. A week since my last post and still the same symptoms continue on, with the low fever coming and going with no rhyme or reason. But Noah is holding his own and is actually quite happy despite it all, and so for now we wait... I'm feeling like we are on pins and needles as we wait for this to turn into something serious enough to head off to the ER. And so I have gotten the kids ready for halloween and I'm trying to finish up all the little things around here in case we go in again. Praying that I'm wrong though and that we can beat this one out of hospital. Brad was up in the Arctic Circle doing training this past weekend and got snowed in an extra day. So now that he is home I can breathe a little easier that we can manage if Noah does go back in.

I heard a song last week that summed up so beautifully the way I have been feeling. Somehow we feel that bad things only happen to other people and we have this feeling of entitlement to a happy, healthy life. But then the rain comes, and we are forced to make a choice. It may not be an easy choice, and we may have to choose over and over each day. We can choose to live a bitter, resentful life, hating the clouds, the wet, the cold...Or we can choose to embrace the rain...be thankful for the rain...love the rain. For we know that in the grand scheme of things, what's a little rain??

Bring The Rain

I can count a million times

People asking me how I

Can praise You with all that I’ve gone through

The question just amazes me

Can circumstances possibly

Change who I forever am in You

Maybe since my life was changed

Long before these rainy days

It’s never really ever crossed my mind

To turn my back on you, oh Lord

My only shelter from the storm

But instead I draw closer through these times

So I pray

Bring me joy, bring me peace

Bring the chance to be free

Bring me anything that brings You glory

And I know there’ll be days

When this life brings me pain

But if that’s what it takes to praise You

Jesus, bring the rain

I am Yours regardless of

The dark clouds that may loom above

Because You are much greater than my pain

You who made a way for me

By suffering Your destiny

So tell me what’s a little rain

So I pray

Holy, holy, holy

Is the Lord God Almighty

~Mercy Me

To listen to the song, check out this link http://youtube.com/watch?v=ElISFieaukc

Stable Here

No fever this morning, just lots of cough symtoms. Hoping the Septra will keep this from turning into pneumonia. Although it is giving Noah some wicked bowel issues, so I'm unsure if he is actually absorbing any of it. So for now, things seem stable here.

And so it continues...

Noah has been home just over a week now. He finished his IV antibiotics on Friday, so now we have started a prophylactic broad spectrum antibiotic (Septra) once a day through his GJ tube. Our hope is that this will help prevent some of these constant reoccuring infections. But this evening he is already running a low grade fever and coughing up lots of junk. Praying it doesn't turn into anything serious. Although already in my mind I am planning out how the week will go if he ends up in hospital. I just feel tired thinking about another possible admission. I think emotionally, each time gets tougher than the last. And yet, Noah is so worth it all and I would do it all a thousand times over just to have him in our lives. In the midst of the struggle of accepting that this constant upheaval from home to hospital is our life, comes great blessings in our beautiful son.

And so our precarious life continues...


"Whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me. For he who is least among you all--he is the greatest."

Luke 9:48

Our Household Is Growing...

As if we didn't have enough going on!



During my pregnancy with Noah, we got a kitten to give us all something to focus on, other than the dark days of waiting. After Noah was born, and we were spending all our time in NICU, our neighbors took the kitten in and loved it so well that it refused to come home again. We told the kids that someday when things settled down we would get another one. Well, Grandma & Grandpa had some kittens on the farm...the kids were in love...and life is never going to settle down...so it was time. I have to admit, she is quite adorable. And pets are supposed to be therapeutic, right?

Noah's introduction to the kitten...

At first... with big sister, it was kind of fun...

But alone with the kitten...

...he was less than thrilled.

Welcome Judah Daniel!

Welcome baby boy! What better way to bring in the thanksgiving weekend! On Friday, October 5th, after a very long wait, we welcomed a new nephew/cousin, Judah Daniel. At 9lbs 4oz, he is a big, healthy boy! Congratulations to Joel & Laura. We praise God for his safe arrival and look forward to meeting him in person! To see more pictures, take a peek at their website:
http://wayofthelordministries.blogspot.com/

On this Thanksgiving we are so thankful for family and friends. We thank God that we can be at home. We are thankful for Children's Hospital and the wonderful staff who love our son. We are thankful for livegiving TPN, lines, tubes, oxygen, medications, and for a healthcare system that allows us to focus on Noah, rather than bills, insurance issues and bankruptcy. And most of all we are thankful for Noah's smiles, happy disposition and fighting spirit through it all!

Birthday Pictures

You're a little piece of heaven

You're a golden ray of light

And I wish I could protect you

From the worries of this life

But if there's one thing I could tell you

It's no matter what you do

Hold to Jesus

He's holding on to you

The world will try to tell you

That might is more than right

That beauty's on the outside

And being good's a losing fight

But remember what I've told you

Because the world will make you choose

Hold to Jesus

He's holding on to you

Hold on to Jesus

Cling to His love

Rest deep in His mercy

Whenever things get rough

Don't lose sight of His goodness
And don't ever doubt this truth

That when you hold on to Jesus

He's holding on to you

Hear me dear Jesus

Rock this little one to sleep

Keep him close when he's scared

And give him grace when he's weak

I know he'll stumble
But I know he'll make it through

If You hold to him just like You said You'd do

Hold him, Jesus

So he'll hold on tight to You

~Brad O'Donnell

Home!

Noah had his scan done today, which came back clean. So he was officially discharged this afternoon and we are home again! Noah is looking great and we are so happy to finally be home! He will be on IV Cloxacillin every 6 hours for another week and then we are going to try giving prophalactic Septra three times a week (an antibiotic through his GJ tube). This will be in the hopes of preventing infections. However, there are risks of growing "superbugs" with long term antibiotic use that would be much more difficult to treat. We are going to give it a try for now though.
Our ID doctor today told us that there is a 50% chance of this Staph infection reoccurring in this line. Not great odds, but hopefully we will get a bit more time out of this line yet before we will be forced to change it.

Home on Pass

Good news! We are at home tonight on a pass from hospital. Noah has to go back tomorrow morning for his WBC scan, and as long as it comes back normal, then he will officially be discharged tomorrow. His last blood cultures came back negative, and his bone scan was normal. He also hit 14lbs today and is just shy of 27 inches long.

Our team meeting on Monday went well. It was decided that we will try to save this line as long as possible since we now have negative cultures and our one lumen is working well. And the general conclusion from everyone was that Noah is line & TPN dependant for the present time. The risks and complications of having the line are high, but when you see the energy, the development, the weight gain and the increased comfort level for Noah on TPN, it's difficult to justify going back to just tube feeding. Without his line, Noah likely wouldn't have much of a chance at life if he can't absorb nutrients, fat and sugar properly. So even though the line complications could potentially end his line too, it still seems like his best chance. We've never really figured out exactly what is wrong with Noah's gut and why we can't make it work normally. All the tests and xrays we've done have come back normal. So on paper, it looks like there is absolutely no problems, and yet things just don't work right.

So, hopefully the news will be good tomorrow and we will be out of hospital and home for Thanksgiving. Thank you to all for your continued prayers and support. Even though we may not say it enough, we appreciate the visits, the coffees and treats. These gestures mean so much to us!

Jesus love me this I know

For the Bible tells me so

Little ones to Him belong

They are weak but He is strong

Made It Through Another Week...

Noah is looking well and is no longer having fevers or breathing issues. However, his 2nd set of blood cultures done on Tuesday have still come back positive again. So despite the fact that he is looking well, his blood still continues to grow bacteria. So we are now looking to see if the infections has seeded somewhere else again or it may be that the infection in the line can't be cleared. His ECHO was clear, which is good news. A bone scan was done today, which we are still waiting for results. A 3rd set of cultures were drawn today so hopefully this one will come back negative.
We also started a bit of tube feeds, which at 5mL an hour, Noah seems to be tolerating. The insertion of the tube went fairly well. Although, the Lorazepam we gave him before the procedure to sedate him, ended up having the opposite effect. He was literally bouncing off the walls for 3 hours after we gave it, unable to settle himself. Don't think we'll be using that drug again!!
We have a team meeting scheduled for Monday morning to discuss the plan for this line and more long term plans. We are so tired of this place and days like today there seems to be no end in sight.

Hospital Update

Well, it seems that we are in a vicious cycle of clots and line infections. Noah was admitted on Saturday with pneumonia. Blood cultures were also done and they came back growing a Staph infection. His platelets are also quite low, so there may be a new clot brewing. His ultrasound today showed that his femoral clot from last admission is still there, but shrinking. Tomorrow he will have an ECHO done of his central line and heart to look for any new clots. We are hoping to be able to save his line, but it will depend on the results of the ECHO.

We are also going to try to restart some feeds, so tomorrow Noah will have his GJ tube put back in under flouroscopy. Hopefully he will be able to tolerate at least a small amount of feeds.

We are tired and discouraged and praying for a better solution to these reoccurring issues. Noah is in good spirits and looking much better today.

Spiking Again...

After a wonderful day of celebrating yesterday with friends and family (will have to post pictures another time), we awoke to Noah spiking fevers over 40C. His chest sounds cruddy and he's been fighting a cold for a while now. We've been suctioning lots. Thinking it's probably pneumonia. Praying it's not his line. We are heading to the ER this afternoon. At least we all got to be together for his special day yesterday!

Noah is 2!!

~~Noah is 2!!~~

Who'd have thought...2 years!! 2 years....

Our baby is no longer a baby! Our little peanut, our ray of sunshine...

We praise God for another year, another milestone we can celebrate. It certainly hasn't been an easy one. We spent 235 days this past year in hospital, muddling our way through so many new issues and illness, and prayed our way through a few more surgeries. And yet, somehow, Noah's birthday has crept up on us. Somehow another year has passed. A reminder of God's goodness and faithfulness through it all.

Happy birthday our dear sweet boy. We love you more than words can say. We pray for many more birthdays to celebrate!!

And in this crazy life, and through these crazy times

It's you, it's you, you make me sing.

You're every line, you're every word, you're everything.

~Michael Buble "Everything"

Tribute to Connor

Heaven is a brighter place today...

Connor, a beautiful boy from my TPN support group has gone to be with Jesus yesterday. His life has touched so many. He is now tube free forever. What a stark reminder of the fragility of our medically complex children and how quickly things can change. I can't even begin to imagine...

Your family is in our thoughts and prayers. We grieve with you.

http://www.caringbridge.org/visit/connorscott99

Line Woes!!

We are back from a very frustrating day in PDU. We tried TPA into Noah's line, but it was so blocked that the nurse couldn't get it in at all. So after speaking with our surgeon, the surgical nurse clinician tried taking the cap off the line and injecting the TPA directly in with a 1mL syringe. After a bit of time, she finally got it in. We were all thrilled! So while waiting for the TPA to do it's thing, I took Noah for a walk to get some coffee. He was playing with his shirt, and when he lifted it up, I noticed his line had ballooned out! All the TPA had found a weak point in his line and ballooned out from there. We quickly went back and they pulled the TPA out, but the line is ruined. It has been weakened too much and when we try to flush it, it just balloons out, looking ready to explode. So, after only 1 week with this new line, we are already down to one lumen. The most frustrating part is that this line was sluggish when Noah was discharged from hospital on Monday. If we had TPA'd it then, we could have saved ourselves alot of grief. An unfortunate lesson well learned. This is such a critical line and the surgeon had a very difficult time putting this one in. We can't afford to lose it.

The good news is that the other lumen still works well, so we are able to use it for the TPN and antibiotics. But having only one lumen is risky and at any sign of sluggishness with our working lumen, we will have to head in. Why can't things ever be easy for Noah? All these line complications are so frustrating and to lose half of this brand new line already is very disappointing. At least we were able to come home, but what a waste of a day.

Blocked Central Line

Never a dull moment around here... one of Noah's lumens on his line (yes, his NEW central line) is completely blocked. We tried to access it last night and couldn't flush it at all. I could see a clot sitting in the cap, so I changed the cap and tried to flush it out with heparin, but no luck. How frustrating!! Fortunately, his other lumen works beautifully so we can still run his TPN, but we need to get this line working properly again. So first thing tomorrow morning we are headed to PDU (pediatric day unit) so that some TPA can be put in Noah's line to try to unblock it. Unfortunately this process can take a few hours, and sometimes it has to be repeated more than once, so I guess we'll be hanging out there for the day.

I took Noah to Superstore this afternoon while he was unhooked from his TPN. We hadn't been there for months, and yet a woman who works there recognized us and came over to remark on how much Noah had grown. I was shocked, as I had only spoken with her a couple of times many months back. But Noah's story had stuck with her and she had been wondering how he was doing. Strangers are very drawn to him. His smile is so infectious, that we usually end up striking up more than a few conversations when we are out. So many lives he has touched in only 2 years... When times seem tough and I find myself wishing for a more "normal" life, God sends these gentle reminders that what we are doing really matters. Noah's life will have an impact beyond what we could ever imagine.

Some new pictures...yep, he still loves to ride in Joshua's dump truck...and play dolls with Kailyn (or rather be one of Kailyn's dolls himself)

Short & Sweet

We are home once again! It feels strange to be in and out so quickly this time, almost like something is not quite right. But we certainly aren't complaining! It is so good to be home again and to be here when Joshua got off the bus from his first day of kindergarten. So now it is time to face the mounds of laundry and everything else that piles up around here. I always feel a bit disjointed when we first get home and it takes a couple of days to get back into routine here.

Noah is doing very well and he looks terrific. His cheeks are filling out and he is happy and full of energy. Hopefully we get a bit of a break before the cold/flu season is on us full force once again.

New Central Line & Doing Well!

It's day 6 of Noah's hospital stay and things are looking much better. An ultrasound was done last week of Noah's femoral line and another large clot extending from his line up to his liver was found. Hematology is stumped as to why Noah's body still produces these clots even on enoxyparin and heparin. He has been tested for clotting disorders, but so far everything looks normal. It looks like as long as Noah needs a line, we are going to be dealing with this complication. This means long term enoxyparin injections twice a day for Noah. His poor bruised thighs are only going to get worse. The idea of adding another blood thinner such as ASA was tossed around, but the hematologist decided that the risk of bleeding would be too high. So we will continue to do what we are doing and deal with the clots as they come. It's very frustrating to be dealing with so many line problems. We know that having a line is not ideal, and yet when we see how well he does on TPN (Noah is over 13lbs now!!), it still seems to me that this is our best option right now.

On Thursday the surgeon decided to go ahead with the surgery. She removed his femoral line and put in a new tunneled double lumen Cook line in his chest. Noah did really well. He spent Thursday night on the surgical ward in a monitored bed and was then moved back up to CH5. Once that old line was out, the fever spikes stopped. He has been fever free for 3 days now and looking great. So the plan is to go home tomorrow once we get everything organized with the home IV and TPN programs.

Going Back In...

Noah is headed back in to hospital this morning. After talking with the pediatrician, we decided that Noah needs to come in to hospital so that Infectious Diseases can figure out what is causing these unexplained fevers. So after I get things a bit organized here at home and make sure the kids are all ready to start school, we will be headed in to stay until things get cleared up. Not sure what this will mean for surgery on Thursday...

Praise You In This Storm

I was sure by now that You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen" and it's still raining

As the thunder rolls I barely hear You whisper through the rain
"I'm with you"
And as your mercy falls I raise my hand and praise the God who gives
And takes away

I'll praise you in this storm and I will lift my hands
For You are who You are no matter where I am
Every tear I've cried You hold in your hand
You never left my side, and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry, You raised me up again
My strength is almost gone, how can I carry on
If I can't find You?

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

~Casting Crowns

My sister-in-law gave me a copy of this song when Noah was born. Yesterday I read the lyrics on my sister, Jamie's, blog and once again they touched me. Noah is continuing to spike high fevers again this evening. No word on the blood cultures yet but if we don't hear anything by tomorrow, then it's good news. So if this is just a virus, we are praying that Noah can fight this off soon so he can be well for his surgery next week.

"Sometimes God calms our storms. Sometimes he chooses to ride them with us."

ER Visit

Well, we ended up spending yesterday evening in the ER. We had gone to see our pediatrician for Noah's pre-op appointment. I mentioned to him that Noah had been having some low fevers, cough and runny nose since Wednesday afternoon. We figured it was likely just a cold, but when the pediatrician checked his temp he was 38.9C. So he decided we'd better head off to the ER for blood cultures, a CBC and a urine culture just to be sure. After thoroughly checking him out and waiting for blood results (all in all, about 5 hours), his CBC came back normal (his white count was great) and all looked ok, except for Noah's temp which kept climbing while we were there to 40.5C. The ER doctor preferred that we be admitted until Noah's blood culture results came back. But sitting in that ER, I couldn't bear the thought of going back in already, especially when his bloodwork looked so good. So after much pleading, debate and discussing it with the other docs, it was decided that we could come home. But if Noah begins to look worse or if his cultures come back positive (takes 48 hours to come back), then we will have to go be admitted.
So for the first time, we were actually able to go home from the ER! All the nurses were as shocked as I was. I told the doctor he was going to have to help me find the front door as we had never actually gone out of it before!
During the night, Noah's temp was still high, but this morning he is looking much better and just running a low grade fever. So hopefully this is all just a nasty virus that will pass quickly. We are praying that this line will last us one more week!! We desperately need this one more week at home!!

Our Little Vacation

This past weekend we packed the van literally to the brim and headed off to my parents cabin for a few days. It's amazing we didn't lose the kids amidst all the stuff we had to pack for Noah, but once we were there and unpacked, it was well worth the effort. The weather was beautiful and the kids got a chance to spend alot of time swimming and canoeing. Noah loved spending time out on the deck and his TPN even attracted the hummingbirds (wish I had gotten a picture of that one!). So I think we've found a new use for our leftover TPN (if only it didn't attract the wasps as well!).

This weekend made me realize just how quickly Kailyn and Joshua are growing up, and how much of it I have been missing. I continue to pray that their childhood is a positive experience and that the life lessons they take from all this will help them grow into stronger, more compassionate people.

Now we are back home, and already gearing up for Noah's next hospital stay. It seems that time these days is measured based on Noah's admissions. We are now 2 weeks post-hospital, and one week to go before we go back in. Noah's surgery is scheduled for Thursday, September 6th at 1:15pm to have his tunneled line placed. We don't know how long he will be in this time. Hopefully it will be a short stay. So I am frantically getting the kids ready for school, and making sure everything is in place for when I will once again be gone. I am really dreading it, but it will be nice to be rid of this femoral line.

Grand Beach

We were able to take a day trip to Grand Beach on Sunday. It worked out quite well with Noah's time off his TPN. We drove in the morning while he was still hooked up, and when we got there we were able to unhook him. We spent the afternoon there until it was time to hook him up again. The weather was absolutely beautiful and it was a wonderful relaxing day. I think everyone should go spend a few weeks of summer in hospital to truly appreciate the sun, beach and fresh air!!

Noah is weighing in at 5620grams (12lbs 5oz), and will be 23 months on Wednesday. Tomorrow we go for his regular TPN bloodwork.

Summer Days

Noah has been home for a couple of days now and we are trying to get as much enjoyment out of these last summer days as we can. I'm hoping for some nice hot weather yet! Noah loves the outdoors and spends lots of time in his swing or just sitting on the deck watching Kailyn & Joshua play. I am trying to just let go of so many things around the house and the yard that sit unfinished. Perhaps in another season of our lives they will become important again, but for now, family is our number one focus. I still haven't completely unpacked my bags from the hospital and it seems like I will never be able to. All the plans we make these days are very tentative as we know it is not a matter of if, but when the next ER visit will be. We are getting used to living life in crisis mode and unfortunately, our kids are getting used to hearing "if Noah's not in hospital, then maybe...". I know it's hard on them and they know far more about hospital life than any child should, but for them, this is the norm. I'm not sure any of us would know what to do with ourselves if things settled down for good. And so we just try to pack in as much as we can while Noah is at home.

In hospital we stopped Noah's tube feedings completely to give his gut a rest for a while. He seems to do better with tolerating his feeds if we rest his gut every so often. And he is always so much happier when we don't feed him. If only I could trade him my love of food for a while!! So we are doing full TPN 18 hours a day. This means he is fed everything he needs directly into his veins through his central line (technically the line he has right now is called a PICC). The tricky part about this is that for those 18 hrs each day, he is not very portable as he is attached to a big double pump and an IV pole. His time off is from noon until 6pm, so we try to plan our day around that time. Because of his hypoglycemia issues, right now this is the most time he will tolerate off the TPN. Next week we have an appointment with the Rehab Center for Children to see what they can come up with so we can attach his pumps to his stroller. The good news is that for now, Noah's liver seems to be tolerating the TPN and his triglycerides that were an issue before, now look great!

Because of the new clot Noah developed in July, we have to continue to anoxyparin injections twice a day until October. Noah is also on IV antibiotics again every 6 hours for another 4 weeks that we give him here at home. Once his antibiotics are done, he will have to go back into hospital for another surgery to reinsert a new more permanent central line in his chest, likely around the end of September. (IF we can get this line to last that long!) During that hospital stay, Noah's GJ tube will get reinserted as well and we will try to restart some tube feeding.
I've included some pictures of our last few days. Some of Bison Transport family day at the Winnipeg Stadium (Noah was not impressed with the dressed up Bomber characters), and our afternoon visiting Aunt Bertha in Steinbach.

Once again, a huge thank you to all of you who have been praying faithfully for us and for all the support we have recieved these past months. Thank you for the meals delivered to our house and for the coffees and treats brought to me in the hospital. We appreciate the reminders that we are not alone in this journey.

Home!

Noah came home today! He was supposed to be discharged yesterday, but decided to spike a fever Saturday night. His blood cultures came back negative today, so he was discharged. We will miss our CH5 family, but we are so glad to be home.