I used to walk around composing blog posts in my head.
Without conscious effort, my brain would begin to craft a post outlining whatever adventures Noah and I had that day... and I would often take pictures with the express purpose of sharing it with the blog world.
...our parents who have loved us well through this entire journey.
...our friends who have called, written, emailed, texted, and come to Tuscaloosa to comfort us.
...to the Alabama athletic department who has overwhelmed us with encouragement and support and made us feel like family.
...the nurses and respiratory therapists at Children's Hospital who loved Noah along side of us and took great care of him (Special thanks to Sasha, Elizabeth, Kate, Vicki, and Frank in the PICU and to Courtney, Beth, Carri, and Amy on the 5th floor).
...Dr. Percy and Dr Winkler who spoke wisely and compassionately to us as we struggled with tough decisions.
...my friends in blog world who rallied so many to prayer and have shared our story far beyond what we could have imagined (Jodie, Fern, Katie, Heather... the list goes on and on).
...those we know and those we don't who have lifted Noah in prayer and showered us with love.
...our gracious Heavenly Father who has welcomed Noah home and healed every part of him.
Our sweet little Noah passed away yesterday. We were blessed and thankful to have him in our lives for 364 days. We are rejoicing because we know that he is now completely healed. We will miss him every day for the rest of our lives.
Noah's memorial service will be held at Capstone Church at 10am on Wednesday, August 20th, with visitation at 9:30am. Capstone Church is at 1907 University Boulevard in Tuscaloosa.
In lieu of flowers, we would appreciate donations to be made to The Rise School in Noah's name. Noah would have started school at Rise on August 13th and the staff members there touched our lives as they provided therapy to Noah throughout the summer. The address for donations is: RISE SCHOOL Box 870305 Tuscaloosa, AL 35487
At long last, our computers have been returned to us.
Even in the absence of my blog posts, we have been overwhelmed and awed by the love and support that have been poured out as we travel this journey with Noah.
Noah remains in the the pediatric intensive care unit on a ventilator. His MRI on Friday revealed that the damage from the leukodystrophy has extended into his brain stem... an area of the brain that controls involuntary functions like respiration. This was not entirely unexpected, but the speed with which the disease has spread surprised even our pediatric neurologist, who has been seeing Noah since March.
Noah, while stable, is still a very sick little boy.
We continue to covet your prayers for wisdom and peace and comfort.
Two weeks ago today we took Noah to the emergency room. I don't think Josh or I expected that he would still be in the hospital today.
Our conversation with the doctors yesterday was hard but informative. They gave us two options of treatment for Noah... both difficult, both requiring a leap of faith.
For now, we have decided to let our little guy rest and recover from all that has happened over the last 14 days. He is finally receiving food again via his g-tube (really only the second time he is being fed in these two weeks) and the ventilator is helping him breathe (although he is showing evidence that he can do it on his own when he wants to). Our plan is to give him several days to work back to full strength and then reassess. We also are requesting another MRI... hoping to gain additional information about what is going on in Noah's brain that might be causing his problems with breathing (it is very easy for the doctor's to blame everything on Noah's leukodystrophy but we would like a little more data).
Please pray that we would have wisdom, perseverance, patience, and strength. Please pray that Noah, more than anything else, would prove to the doctors that he is willing to breathe on his own without the ventilator.
PS... We are without any laptops at the moment as they are being repaired at the Apple Store. And, unfortunately, I can't seem to post to the blog from Josh's phone. So please be patient with my updates.
Noah's carbon dioxide levels were extremely elevated when we arrived at the hospital this morning. He was lethargic and wouldn't open his eyes.
I am so angry all I can do is cry.
We specifically asked the doctors yesterday if they were going to keep track of his CO2 and we were told not to worry about his gas levels. When they finally measured it this morning after I raised the alarm because of his odd behavior, they were higher then they had been during his whole hospital stay.
He is still on the BiPAP machine but if his numbers don't improve they will put him back on the ventilator.
Noah is simply not doing a good job exhaling and getting rid of CO2. His brain may be responsible but no one can really seem to tell us. They are finally going to start feeding him again... which hopefully will give him some additional energy to work on breathing a little bit more on his own.
Thank you for the flood of encouragement and love after my last post... it helped restore a little strength and hope in my spirit after a really hard and long day.
Our computer issues continue which leads to my infrequent posts... the battery on our laptop will not charge using our power adaptor so we have to use it sparingly throughout the day. Josh snagged an appointment at the Apple Store on Thursday to see if they can help us solve the problem.
But on to what you really want to know...
Little Noah Man came off the ventilator today!!! Hooray!
After a good chunk of sleep last night, he was in a much better mood today. We were able to distract him from the breathing tube by playing with him and that allowed his respiratory rate to stay in a much more normal range. They weaned him from a little of the support the ventilator was giving him and then took his breathing tube out around 5pm this afternoon. After a little coughing and sputtering, he took off breathing like a champ!
They currently have him on the BiPAP machine to try to support his respiratory system a little ... he looks like a cross between Darth Vader and Snuffaluffagus when it is on. He has a black skull cap that covers most of his head down to his neck and then a blue mask over his nose that connects to a long tube that goes over his head. Pretty funny looking. I'll try to snap a picture of him at some point as my description doesn't quite do it justice.
He was much more tolerant of the BiPAP machine this time around and seemed to be in good spirits. He has been playing with his toys and interacting with the doctors and nurses. He is still having a hard time resting as his current bed in the ICU is in a high traffic area, but he has taken a couple of catnaps over the course of the day.
A couple of specific prayer requests for the next few days:
-We want to have a pow-wow between the doctors we work with in the ICU and the pulmonary doctors who will take care of Noah when they move us back to the 5th floor... there has been a communication gap between these two teams that needs to be filled before Josh and I will feel comfortable with the plan for Noah's care.
-Noah will begin receiving formula through his g-tube tomorrow. Please pray that he digests this food easily and that there are no respiratory side effects, specifically with any feeds that take place while he is on the BiPAP machine.
-We need Noah's carbon dioxide levels to stay in the normal range.
-We need answers as to what is causing Noah's respiratory difficulties... no one seems to be able to tell us this at this point... and a course of treatment that will not dramatically affect his quality of life (freedom of movement, ability to go to Rise, etc).
Thank you, thank you, thank you, for joining us in praying for our sweet little guy. He steals my heart every time I look at him and I just want to scoop him up and take him home.
Josh and I both agreed that the best thing that happened today was that we found the stairs.
The elevators at Children's hospital are soooo slow sometimes and then become very crowded with all the people who have been waiting. We have been looking for stairs since last week and finally found them today...
But you know it has been a rough day when this discovery makes the top of the highlights list.
The rough parts of the day included:
-Noah staying on the ventilator today... and hating every minute of it.
-Noah being so agitated by the breathing tube that he could not fall asleep even though he was completely exhausted (they finally gave him some medicine around 6:30pm tonight that allowed him to rest)
-Me breaking our back up laptop... which is why I haven't updated the blog until now. It is the second laptop I have managed to wreak havoc on in the last month.
-Coming home to Tuscaloosa for the second time without Noah
I am very glad that day 11 in the hospital has come to an end. I only hope day 12 is better.
He had a really rough morning that ended with a slight obstruction in his airway and high carbon dioxide levels. They have put him back on a ventilator and he is breathing much more comfortably now. His numbers are back to normal but the trauma of the morning has resulted in a lot of fluid build up in his lungs. He is receiving treatment for this fluid every 4 hours and we are hopeful that much of it will be cleared up by tomorrow.
We have a lot of questions and very few answers.
One line of thinking is that Noah's digestive issues are continuing to plague him. We started feeding him via g-tube on Friday night. We found a middle ground with the doctors regarding his feeding regimen... not nearly the increase in volume that they were wanting but still a fairly ambitious plan that tested his stomach capacity. This was potentially our undoing. In hindsight, it seems that Noah started getting fussier yesterday after we hit the 3 ounce mark in our feedings... and then we used a continuous drip over night. All of that formula may have encouraged some reflux to sneak up past the fundoplication and add to the secretions that have been his nemeses from the beginning. These secretions make breathing more difficult for Noah and reduce his ability to vent carbon dioxide effectively.
A second line of thinking is that Noah's leukodystrophy is causing him to lose control of the muscles that help him keep his airway open. This is a much more discouraging possibility. It is not uncommon for kids with neuro-muscular disorders to struggle with breathing and many end up with tracheostomies to control their airways. Please pray fervently against this. We obviously do whatever is necessary for Noah but do not feel ready to take this step anytime soon.
We are exhausted but relieved but so thankful that Noah is breathing easier. He is likely to be in the ICU for the next few days and I am making no predictions about when we might be going home.
“You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.”
Just when it started to look like we were in the home stretch of this hospital stay, we things have taken a turn. Noah's carbon dioxide levels were escalated this morning leading to some additional (much to Noah's dismay) hours on the BiPAP machine. We are frustrated and discouraged... and unsure what direction this might take us. Please pray.
Today is the 1 week mark of our hospital stay with Noah. Hard to believe. It looks like we are stuck here until Monday at least, barring any major changes. Although I think some of the doctors wish they could kick us out earlier-more on that later!
Noah has had a really good day. He has been taken off the BiPAP machine except for potentially at night and has only minimal supplemental oxygen going in through his nose. His numbers have looked really strong... even his carbon dioxide levels have dropped into the upper part of the normal range, a first since we arrived last week.
The doctors want to do a sleep study because they believe Noah isn't venting carbon dioxide effectively. The study would help us know if he needs any kind of respiratory support while he sleeps at night. Unfortunately, no sleep studies are performed on Friday or Saturday nights... so the earliest we could have one done is Sunday night, and that isn't even a definite. Josh and I are hoping that Noah's CO2 numbers continue to remain the normal range so we can be discharged and schedule the sleep study as an outpatient procedure for a later date. Not sure if the doctors will be on board with this plan...
He seems to be recovering from his surgery with amazing speed... the small incisions from the procedure don't seem to bother him at all. We have just begun to feed him via his g-tube again... which is the source of fiery debate between us and the doctors. I won't bore you with the specifics, but suffice it to say that the "orders" for Noah's nutrition are ridiculously aggressive. Prior to being in the hospital, we were feeding Noah three ounces four times a day. The goal given to us this morning was to make it to five ounces five times a day by tomorrow... which is simply not realistic at this point. The nutritionists are making calculations without knowing Noah's whole story or even talking to us... not to mention the fact that the surgeon has told us time and time again that the biggest mistake made after fundoplications is OVERFEEDING!
We have already gone two rounds with the residents on the respiratory team (who don't quite know what to do with parents like us) and made a sweet dietician very uncomfortable. The bottom line is that Noah's nutritional needs are VERY different than that of a typical 11 month old and his stomach behaves VERY differently as well. We know that better than anyone in this whole hospital. We are willing to slowly increase volumes and work on his caloric intake but we want to do so at a conservative pace. I'll keep you posted on whether or not the doctors agree with our perspective!
Where to start? Josh and I are an ordinary couple who had an extraordinary little boy. Noah was diagnosed with a leukodystrophy that caused abnormalities in his brain.
He passed away on August 16, 2008, just 364 days after he was born. This is a story of our journey, the joys and sorrows we encountered, and the faith we relied on as we loved our little boy.