Rapid Improvement

Noah is looking great! His strength has returned quickly and he is up and playing in his crib these days. He is starting to get quite bored being isolated in his room, but he's got a great view of the front desk, so he can watch all the action. His latest cultures from PICU came back negative so his antibiotics and antifungal treatment will all be done this week. But we have much to sort out yet before Noah can get home. He is still O2 dependent all the time but with chest physio 3 times a day, he is getting rid of alot of crud and his lungs are sounding good. He is almost weaned off the morphine infusion and then we will have to work on the Lorazepam (which he is most addicted to). His fluid balance has also been an issue with rapid weight gains and losses of fluid so he is still lasix dependent. But at the same time, the lasix is causing issues with his calcium and electrolytes. This means daily changes in his TPN to try and find the right balance, so he needs to get to a more stable place before home TPN can happen. Noah also needs a more permanent central line and a stoma revision, but our surgeon isn't too keen on doing surgery right now and wants to give him at least another week to recover before she takes him back to the OR.

And so we wait out the days, unsure of how long we may be here yet, but just so happy to be headed in the direction of home! Seeing Noah giggle and play, it's almost impossible to believe that the past 3 weeks actually happened! I think perhaps it was all just a really bad dream! I thank God for this precious gift of time and I don't ever want to forget just how close we came to losing Noah.

CH5

Noah was moved back to the ward yesterday. We are so thankful to be back on our "home" ward and one step closer to home. Noah is doing very well. His strength is returning quickly and he was sitting up for a few minutes today. He is a bit frustrated as his strength isn't returning as quickly as he would like and he is not yet able to do everything he'd like to be doing already. His days and nights are very mixed up and so he wakes at 3am and decides that it is time to play. How can I help bit smile though, when I thought I may never see him play again. Still working on weaning...hoping to be off the morphine infusion in a few days from now, and then we will work on the Lorazepam.

Thank you so much to the wonderful PICU staff for the excellent care Noah recieved. We will always be grateful to you!

Faith of a Child

A good day for Noah today. No weaning on the morphine today as he is still quite jittery and not tolerating the weaning very well. I don't mind the pace at all and I'm happy to go as slow with the weaning as we possibly can. I don't want him to have to feel any discomfort from all of this. We switched his medazolam infusion to scheduled doses of lorazepam instead, as he can't be transfered to the ward with the medazolam infusion. If all is stable overnight, he will likely be transfered to the ward tomorrow. This evening one of the nurses said that she'd never seen a patient that had so many nurses and doctors come by just to see how he is doing. After she got some smiles from Noah she said there was no question as to why he is so loved so much here. That's my boy!!

Kailyn & Joshua came to visit yesterday. Noah was smiling and very excited to see them. I told them that Noah's tube is gone to help him breathe and that he is getting much better. Joshua just looked at me and stated very matter of factly; "Well that's because I prayed for that." The faith of a child...

Another Miracle!

16 days ago, I really didn't think it was possible. As much as I hoped and prayed, the words from the doctors was not very hopeful, and I really thought we may be at the end of Noah's journey. But Noah's time is not now...and thanks to the prayers of so many of you, God has chosen to heal our son and Noah was extubated today! He did wonderfully and is only requiring O2 by nasal prongs. His chest xray looks really nice, and other than some desats, he is doing so well! I cried tears of joy today as he smiled at me and tried to pull my mask off. My little man is amazing, and I am so thankful to have been given more time with him. He is responding and moving well (still very weak, but getting stronger), so it looks as if his time spent down during resuscitation did not have any major effects on his brain function. He had a lovely 8 hour sleep this afternoon once that tube came out. He was definately a happy little guy! Still haven't heard that cry, as he is still very hoarse.

We are having some issues with weaning his morphine and medazolam. Noah has become very dependent on the drugs and despite the slow wean, he was showing signs of withdrawal this evening. Poor little guy was so jittery, irritable, and unable to settle himself. So we had to back off on the weaning a bit just to make him comfortable and give him some Lorazepam to take the edge off. His latest blood cultures came back negative. His lung culture is still growing pseudomonous, and the strain has changed slightly, making it more resistant to some of the antibiotics and more difficult to treat. Hopefully the newest lung culture taken today will come back negative as his lungs are improving. And no more fever spikes since yesterday evening!

Thank you for all your prayers and support in so many ways. Thank you for the meals, treats, coffee and childcare. Thanks to the CH5 staff for all your visits and for showing me how much you all love Noah. That means the world to me. Thanks to our small group for taking the kids out for a special day on Monday and making sure that they know they are cared for too! I couldn't make it through these days without the support of so many people!

Leaps & Bounds

Noah has been improving by leaps and bounds over the past couple of days!! Despite continued fevers, he was able to switch to PSV mode yesterday so he is initiating all his own breathing and the vent settings are minimal now. He is slowly weaning off all the sedation and was quite awake this evening. His strength is returning quicker than we anticipated and we are already having to watch those little hands. This evening he was able to lift both his arms and legs off the bed. There is talk of trying to extubate him tomorrow and see how he does! What an incredible little boy we have! To see him open his eyes and respond to us just brings me to tears. I can't wait to hear that cry!!

Slow and Steady

Continued slow improvements over the past couple of days! Everyone is quite amazed to see how far Noah has come in the past week. We even got a smile out of him yesterday! What a fighter he has proven to be over and over again. Noah's hemoglobin and platelets are holding. We've been able to do a bit of weaning on the vent. We tried switching him to PSV (pressure supportive ventilation) yesterday, where he has to initiate all his own breaths. He did ok for the first hour and then decided it was too much work to breath all the time! So we had to switch back to full support. He is starting to initiate some breaths on his own today, but he just doesn't have the strength yet to keep it up. So the improvements are very slow, but they are there! The only down side is that Noah has been spiking fevers again yesterday and today. He was cultured yesterday, so again we wait!

Our view from Noah's room...

When I need a little "pick me up", I just need to glance out the window at all the hearts for Noah. Thanks so much Nicole and Mary for our little cheering squad across the street. It just makes my day to see how much Noah is loved!!

"When I said, 'My foot is slipping,' Your love, O Lord, supported me. When anxiety was great within me, Your consolation brought joy to my soul."

Psalm 94:18-19

Quiet

Very quiet day today...finally. Noah is settled on the ventilator and holding his own. Kailyn & Joshua came in to see him today. Now that the scary oscillator is gone, we decided they would be ok to come in. The kids did great and Noah even opened his eyes for them! He is extremely weak from being so sick and paralysed for 9 days, but he did manage to open his eyes for a couple of minutes throughout the day. He is very sedated, so he isn't focusing on much when he does open his eyes, but it's reassuring to know that he's in there somewhere! He tries to move his limbs, but it is too much effort at this point. He hasn't tried breathing on his own at all, he is letting the ventilator do all the work for him right now.
Noah's blood pressure is stable and his kidneys are working well. His chest xray is showing small improvements, but still very wet and hazy. His hemoglobin is drifting low again, so blood was brought in for him today. He will likely need another transfusion in the next day or two. His platelets are still low, but holding. He spiked another fever this evening. Still waiting for final culture results on the last blood culture to see exactly what is still growing.

Ventilator!!!!!!!!!!

Noah has taken some great leaps forward today...he is off the oscillator and on the conventional ventilator!! Never thought I'd be so excited to report that Noah is on a ventilator...it's all perspective, I guess. The transition went very smoothly. The oscillator hasn't left his room yet...the doctor isn't quite convinced he may not need it again, but so far so good! The ventilator is quiet, calm and it looks so much more comfortable for Noah. And he no longer needs to be paralyzed. He is still well sedated, but able to move his muscles now. He opened his eyes for a few seconds today and squeezed our finger. How that makes my heart soar!! We are so excited for this big step forward. We know he still has a long way to go, but there is hope and I feel like for the first time in 9 days I can breathe again. His blood pressures have been stable today and no more fevers. We've been able to start the Lasix again to help him get rid of more fluid.

Of course not all good news...his blood culture has come back growing a gram negative bug again. This explains the persistant fevers. It is likely still the Pseudomonous, but when it comes to Noah and bugs, NOTHING is assumed! So another antibiotic was added this evening to give him better coverage. Praying we can beat this one.

The Good, The Bad and The Ugly

A little of everything to post today. The good news first... Noah's lungs are slowly improving. We were able to make big changes on the oscillator settings today. The MAP is down to 18 and the Amplitute is 45. There is talk of trying to switch him to a conventional ventilator in the next day or two! A huge step forward for Noah!! The bad news...Noah has continued to spike fevers. No word on the cultures yet. Very worried. And the ugly...We are having a very difficult time maintaining Noah's blood pressures. He got rid of alot of fluid today, but it was so fast that he was having trouble maintaining his pressures. So we were forced to stop the Lasix for now, even though he still has so much excess fluid. And we are having to bolus him with Pentaspan to increase his blood volume. And he recieved albumin again this evening. His pressures are still unstable tonight.

It breaks my heart to see Noah like this, when he was so full of life and joy. I miss that infectious laugh so much and I ache to hear it again. I know that there is a place beyond this earth free of pain and sorrow. But that doesn't make it any easier to let go. I still beg and plead for Noah's life.

Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live...

Chris Rice

Valentine's Day

On this Valentine's Day, I have overtaken Nichole's Blogging to remember Noah's Laughter....enjoy. For Noah, thanks for bringing me such joy. For Nichole, thanks for being the awesome wife and mom that you are. You are amazing and I Love You so much!!


Brad

Just wanted to add that the squeaky sound you hear is our pantry door opening and closing. Noah found the sound so funny!!

Baby Steps

The last couple of days have been a bit more settled here. Noah has been able to wean down a small amount on his oscillator settings over the past 2 days. He started at a MAP (mean arterial pressure) of 34 and an Amplitude of 62 last thursday. Today his MAP is now 22 and his Amplitude is 50. He is also off his insulin and keeping his sugars fairly steady other than the odd hypoglycemic episode every once in a while. He recieved a dose of albumin during the night and we've increased the lasix infusion and his kidneys are starting to finally get rid of some of that excess fluid. He is still very puffy, but it is slowly improving. He was weighed this morning (a HUGE undertaking!) and he is 8.5Kg. This is 1.2Kg more than when he came in, so he still has lots of excess fluid and his lungs still look quite wet on the xray. These are all baby steps, but signs that his body is trying to heal itself. Seeing the oscillator settings decrease gives me hope, and at the same time, seeing how far he still has to go can seem so hopeless. It is still very much a wait and see game.

The gram negative bug came back as the dreaded pseudomonous again. He has grown this a couple of times in the past and seems to be colonized with it, so I'm not suprised that it has reared it's ugly head once again. He is growing it in his blood and also his lungs. He was fever free the past couple of days, but this evening he spiked a fever, so he was recultured once again! Praying that nothing grows!! His platelets were improving, but this evening they have dropped once again so we are getting close to transfusing. Still waiting on an answer in regards to the possible antibody in his blood.

It's been a week on the oscillator already. A week since I've seen Noah's eyes..seen his smile...heard his cry. I miss him so much.

Status Quo

Not much change today...still sitting at the high oscillator settings...still struggling with keeping Noah's CO2 from climbing too high. This morning's chest xray showed slight improvement...this evenings was about the same. Each day he gets more and more swollen as his kidneys just can't keep up. We've increased his lasix and he is getting Pentaspan boluses as well. The problem is that his potassium keeps dropping with all the diuretics, and then he requires potassium boluses. His blood pressures keep climbing with all the excess fluid, but the lasix does help bring it down somewhat. The good news...no blood or platelets needed today. Platelets are still very low, but high enough that we can sit tight for now. We are all exhausted and the tears just don't stop.

2 Steps Forward...2 Steps Back

The hours here are an unbelievable emotional roller coaster. It's difficult to put into words. We cling to every ounce of hope and at the same time feel such hopelessness. It was another rough day for Noah, starting during the night. He spiked another fever, his heartrate was sky high, his gases began looking worse again, and his CO2 levels just continued to rise. His pressures on the oscillator had to be increased again. So the doctor decided to try a position change and put Noah on his stomach. For those of you who know Noah well, you know how much he absolutely detests his tummy time!! Well, I guess he just needs a little sedation to tolerate it, because his CO2 began to go down, and his vitals began to settle out again. We were able to go back down a small amount on the settings but he is still higher than yesterday. So he spent his day on his tummy! At 6pm we tried to turn him on his back and sure enough, his CO2 levels began to rise again. So back on his tummy he went for tonight! We also had to double the amount of Morphine and Medazalam he is getting to get him more comfortable again, and he also gets a bolus of Lorazepam before position changes. I think we now finally have a better handle on his comfort level.

Noah also recieved another blood transfusion today as his hemoglobin had dropped again. His color is much improved this evening. And he is still a little platelet eater. He recieved 2 units of platelets this morning and another 2 units this evening. Our doctor is suspecting that he has developed antibodies to the platelets, but we are still waiting for results from the blood services lab to confirm this. If this is the case, then they can look for donors to match him and that should help his body hold on to the platelets. (Thanks Anne for that comment. It was exactly what we had been discussing today and I do hope that this is the answer).

Blood cultures from yesterday have also come back growing 2 NEW bugs!! A new gram positive and now a gram negative. The lab hasn't confirmed exactly what type yet, but we have added even more antibiotic coverage. Not sure there is much else he could grow at this point! The good news is that we are no longer getting positive cultures for yeast, so it must finally be under control with the antifungals.

Praying for a better night. Please also pray for Kailyn & Joshua who understand so much more than we give them credit for and are having a difficult time as well. Noah continues to fight, and as long as he does, we will fight too.

"The Lord is close to the brokenhearted and saves those who are crushed in spirit."

Psalm 34:18

Rough Day

We are told to expect a very rocky road, but it's tough when we thought we had made a bit a progress yesterday to have a day like today. This morning Noah's blood gases started going downhill again and we were forced to go back up on his oscillator settings. It was discouraging and frightening to see how critical his condition is and how quickly it changes hour by hour. Just when we think we have a moment to breathe, things change again.

We have had to increase his sedation to a combination of Morphine and Medazalam because his blood pressure and heart rate would go sky high whenever he was touched. So the Fentanyl just wasn't enough to keep him comfortable. And we are having alot of problems with Noah's platelets as well. He recieved another 3 platelet transfusions today and they are being used up almost as fast as we can give them. He's been having a fair amount of bleeding from his mouth and nose. His hemoglobin was down to 70 today as well, so he also recieved a unit of blood. We also had to put him back on a continuous insulin infusion because his sugars have been skyrocketing. He is even more swollen today but we have started Lasix which is helping his kidneys get rid of some extra fluid. The good news for today...since his old line was removed, Noah remains fever free for the first day in 2 weeks! We drew new blood cultures this evening from the new line and from his arterial line so we will wait to see if they grow anything.

This evening things are more settled again and I think I should be able to get a few hours of sleep. Thank you so much for all the support and prayers.

Holding His Own

Noah had a fairly uneventful night and seems to be holding his own. He had a fever spike this morning, but we were able to catch it pretty quickly and get it down before it caused too much havok on his other vitals. He's been needing quite a bit more sedation, as is shown by his heart rate skyrocketing when he is handled. His blood gases look better today and we've been able to go down a bit on the pressures of the Oscillator but his last chest xray didn't show much change, so we likely won't be able to go down much more right now. He is no longer close to the maximum settings, giving us a little "breathing room". His blood sugars have been up and down and all over the place and he's been needing insulin infusions as well as glucose boluses. We are still trying to find the right balance. His blood pressures were high this morning, so the Dopamine was stopped, but then they began drifting down again, so he is on Pentaspan which helps increase the plasma volume in his blood. His platelets were down to only 4 this morning, so he recieved another platelet transfusion. This afternoon they were only up to 7, so he will recieve another transfusion this evening. Our surgeon, (who is also the attending in PICU this weekend), decided to put in a temporary line in his jugular and remove the infected central line. This was all done right in PICU and it went well. We are hoping that by removing a partial source of some of the infections that this will give him a better chance to fight. He is quite swollen today because of fluids, but his kidneys are functioning better today and producing more urine. He has a catheter in so that his output can be measured more accurately.His other organs are holding strong and so we continue to fight. It has all happened so quickly that it doesn't seem quite real yet that we are in this situation. My arms feel so empty and I desperately long to just hold him. We are living on prayers, hugs and coffee. Please keep them coming!! Thank you for so many of you who stopped by yesterday. Noah's a pretty popular guy around this hospital and we love to see how he has touched so many lives.

Intubation & Oscillator

Noah lost the fight early this morning to breathe on his own. He began having respiratory distress again around 1am. At 4am he started to crash. He could no longer keep his O2 sats up on his own and had to be intubated quickly. Even with the intubation, the staff was unable to ventilate his lungs. A chest xray showed that they were so bad that almost no air was moving in them at all. After being unable to raise his sats above 50 with ventilation, we thought that we may not be able to resuscitate him. The staff decided to try him on the Oscillator and after a couple of attempts, his sats began to pick up. This is one step above ventilation support, and he is needing high settings. So he is almost maxed out on the amount of support that is available to him but he is now satting well on the Oscillator and his blood gases and chest xrays are showing small signs of improvement over the course of the day. We are still trying to keep his blood pressures stable with Dopamine. There is not much left that can be done at this point except to wait and see if his lungs will have a chance to recover and if his other organs can remain stable enough to fight off the infections. He is paralyzed to keep him from fighting the tube and sedated for comfort and he gets to rest and no longer has to fight for every breath. He fought until they intubated him though! Even with sats of less than 50 when he was being bagged, he fought hard against the mask.
After almost losing him this morning, I just want more time. I'm just not ready to lose him yet! And yet I know I have to be willing to place him in God's hands.

PICU

Noah went to PICU this morning after another RRT call for respiratory distress. Yesterday he was having some distress as well and RRT saw him, but he settled on the ward. His platelets dropped dangerously low again and he recieved a platelet transfusion yesterday evening. He is also neutropenic, meaning his WBC count is very low and his bone marrow is having a difficult time fighting all the things that are going on right now, so he is very immunosuppressed.

He recieved another blood transfusion this morning because of his low hemoglobin, and that helped his respiratory issues somewhat, but he is still struggling. And according to ID, Noah has taken the "hat trick". His NPA came back growing Influenza A (which must have been what we through our household) which has led to a pneumonia. His blood cultures from Monday came back showing yeast STILL in his peripheral culture. And his blood culture from his line is growing Strep bacteria. So he has managed to develop a viral infection, a bacterial infection and a fungal infection all at the same time.

Now he is in PICU fighting just to breathe on his own. He barely opens his eyes as he is so exhausted from the work of breathing. He is remaining stable on O2, but he can't keep up this amount of work for much longer. If he doesn't improve and starts to tire out, he will need to be intubated to allow his lungs to recover. We are praying it doesn't come to that as that could mean a long haul for him.

Did I Mention I Hate Yeast??

It's been a week now, and Noah is still not responding to treatment. A second antifungal called Caspofungin has been added, but so far he is still spiking high fevers bringing along with it respiratory distress. The RRT was called once again this morning, and they managed to settle him on the ward with fluid and potassium boluses. He has been quite settled throughout the day. His platelets and hemoglobin have once again dropped dramatically, and blood was brought in today in case another transfusion is needed. New blood cultures were drawn today as well. If these come back growing yeast still, then our surgeon will be forced to remove his central line and replace it with a temporary one until we get a handle on things. He has also been started on a course of Prednizone and antibiotics for the pneumonia in both lungs.
To top it all off, Noah's Gtube came out again and part of his stomach has herniated out of his stoma. Once he is well enough, he will need surgery to have his stoma revised before we can place a new GJ tube.
We are all exhausted and concerned. Noah is in a very precarious situation and I can't rid my mind of the "what if's"... I can't even begin to imagine what we would do without Noah, and yet the possibility that we may not beat this is always there. And yet our brave little guy is such a fighter through it all. He can be so sick, and yet still manage the odd smile! We appreciate all your prayers and support so much.

Still Hanging Around

It was a rough evening for Noah yesterday. His breathing got progressively worse over the course of the day, and he began having alot of respiratory distress in the evening and another temperature spike. The RRT (rapid response team) was called because his breathing became so difficult. He narrowly escaped another PICU visit, but we managed to settle him on the ward with fluid boluses, oxygen and multiple ventolin masks. His chest xray showed some pneumonia in both lungs. And new blood cultures were drawn, which have come back STILL growing the dreaded yeast. If the treatment was being effective, we should be getting negative cultures by now, so ID is trying to decide what course of treatment we should take next. His hemoglobin is still dropping, so this evening he recieved another blood transfusion. Hopefully that will help perk him up and give his body a good boost. He was looking much better today which was good to see after last night's scare. Please continue praying that our little man can beat this yeast once and for all!