Wednesday, December 31, 2008
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.
Tuesday, December 30, 2008
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.
Monday, December 29, 2008
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.
Sunday, December 28, 2008
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!
Saturday, December 27, 2008
The kids come home tomorrow...can't wait to see them!!
Friday, December 26, 2008
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...
Thursday, December 25, 2008
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!
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.
Wednesday, December 24, 2008
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.
Tuesday, December 23, 2008
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...
Enjoy, and grab the kleenix! (posted by erin, nichole's sis)
Sunday, December 21, 2008
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.
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...
Saturday, December 20, 2008
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.
Wednesday, December 17, 2008
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...
Off to TPN clinic this afternoon...Noah looks a mess. Praying he will kick this!
Monday, December 15, 2008
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...
Saturday, December 13, 2008
Wednesday, December 10, 2008
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.
Sunday, December 07, 2008
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.
Friday, December 05, 2008
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...
Monday, December 01, 2008
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...