Happy Halloween!

Here’s a treat from the medical staff:

Since arriving I’ve heard the words “improvement” and “better” with regard to the SOUND of Landon’s left lung.  The have brought in an infectious disease team to ensure they are utilizing the best mix of antibiotics, since his pace of improvement had previously been slow to non-existent.  They made a change today that will hopefully also give him a boost, and continue the improvement.

Landon is still very very sick, and is a vulnerable boy right now.  But it feels good to hear that he’s in the process of moving in the right direction, rather than still in a downward spiral.  Assumptions are still that he aspirated at some point, which led to a start of pneumonia, which spread aggressively between Monday and Wednesday despite everyone’s best efforts.   But we’re looking forward now, focused on improvement, and rooting Landon on.

And fear not, Iron Man is on duty, even when duty isn’t glamorous!  The entire nursing staff is dressed as super heroes today.  In other words, Landon fits right in.

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A treat for mama:

Landon opened his eyes ever so slightly when I was talking to him about the last few days.  He was probably laughing about the tricks Nolan has played on us lately.  And oh boy have there been tricks.

 

And lastly, here’s a treat from Landon!

He is still on the vent, but is breathing with and over it.  He is also back to taking some feeds.  Ignore the tape mustache, and appreciate that this is one cute and tough pup!!

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Lion Share of Hope

Landon’s chest X-ray today revealed that for the first time since Monday, the pneumonia did NOT get worse.  In fact, they saw a teeny tiny bit of improvement in the upper part of his left lung.  He still has a long road ahead of him, and that’s nothing to write home about (although I of course did, and sort of am again now).  But any good news is welcome, even in small doses.

I can NOT wait to get to him tomorrow.  This is the longest we’ve been split up, and I am not good at it, especially when he is so vulnerable.  Daddy has done a great job taking care of him though.

We continued the Halloween festivities here.  Tonight N got to wear L’s lion outfit.  He was not a fan.  And may have roared at me more than once.

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He was THIS happy to take it off.

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More to come tomorrow, when I am once again by Landon’s side.

Puppy Love

Nolan is sending Landon some puppy love.

Landon is still very sick, but is in good hands. It will be a quiet night as they continue to give his body and the antibiotics time to start fighting the pneumonia. We are hopeful that tomorrow will be the day he turns the corner. Thank you as always for the thoughts and prayers.

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Cause and Effect

It’s been an interesting day.

First and foremost, they are treating Landon’s pneumonia.  Priority 1 is getting his lungs cleared up.  They did determine that the pneumonia is bacterial, so they are treating with antibiotics, as well as breathing treatments.  Landon is getting tuckered out from all the hard work, so they have bumped him to Bi-pap, and most recently (perhaps as we speak) to intubation.  Don’t be too alarmed by that (yet), he’s been working very hard for a couple of days.  Getting more assistance will let him recoup and rest up, while the antibiotics continue to work on the pneumonia.  Then hopefully after a couple of days we’ll see him start to clear his lungs, and regain some strength.

A second effort; what caused all of this?  The current theory is that his sodium got dangerously low.  Low sodium can lead to a seizure, even in a healthy adult.  Being that Landon is even more susceptible to seizures, it was a bad combo.  (This would also explain why it wasn’t his normal seizure).  The seizure, combined with an NG keeping his pathway open led to aspiration, and the aspiration led to pneumonia.  Shew!  If you’re asking what caused his sodium to drop in the first place, you are not alone.  Their current best guess is dehydration.  However, we weren’t seeing that at home.  In fact, thanks to the NG tube we were able to ensure he got his fluids even more so than normal, and he was having good diapers.  He ended up with diarrhea, but not until Sunday afternoon (after the seizure).  So while he may have ended up dehydrated by Monday, I’m not positive that was the cause of the sodium/seizure issue.  We may never know actually.

Nonetheless, we will make some dietary changes.  AND…we are headed toward a G-tube.  That was actually already on the agenda for the boys.  We had been in the process of working out scheduling, but this has escalated things.  And given the new aspiration concern, G-tube is safer, and a  better long-term plan.  While putting the boys through a surgery isn’t ideal, we are not discouraged by a G-tube.  It will make life easier in many ways, allow the boys to use their energy on more important things, AND we can still work on oral feeding skills, but without something irritating their throat.

Dr Dad has been busy, and has done well at keeping mama updated and at peace.  Here is a picture of our sweet Landon, pretending to scuba dive.

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Landon Update

I have got to start updating you more often. As it is, it seems I only find the time to do so when things are going poorly…and that’s not a fair representation of our lives. There’s also a lot of good, and a lot of happy.  A lot of blessed.  Nonetheless, I wanted to share an update.

Since arriving home on 10/17, the boys have been steadily improving. It may take them weeks to recover to “full strength” after something like this, but they were on their way up nonetheless.

Aside from the fact he is eating via NG, I would say Nolan is himself. He is smiling, kicking, smirking, and back to his normal alert level. We still have the occasional big spit up, but it is infrequent enough. He is gaining weight well, and is up over 19 pounds!!! He seems to finally be gaining a little bit of strength back.

Landon has also been keeping down food well. Especially if you consider how far he has come from the 10/13-10/14 time frame when he couldn’t even tolerate medicine or small amounts of pedialyte. He had started to perk up a little bit more, and we had even gotten back to working on trunk control and assisted sitting a time or two recently. But alas…he had another set back. On Saturday night he had a seizure. Not an infantile spasm, which is what we’re used to seeing from these two. But a focal seizure, affecting his right side. We haven’t seen one like that in what seems like months. And we have never seen one that displayed that duration or speed. I patiently waited for 5 minutes to pass, but it did not stop or slow. For the first time ever, I used his rescue med. I gave him a dose of Midazolam nasally, and it stopped it completely within 5 minutes. He has been at varying levels of “ok” and “iffy” since then. He sounded good Sunday morning, and we even ventured out to church.  Never under stress. Never struggling to keep feeds down, or losing color, never a real fever.   But not quite ok, and eventually breathing abnormally.  Justin took him in to the DR, who helped order a chest x-ray and blood work.  Landon has pneumonia in both lungs.  I haven’t heard the severity.  This could be due to an illness returning, or it could be due to aspiration during or as a result of the seizure.  Regardless, the decision was made to get him to a children’s hospital.  This time, we have chosen to get them to our regular specialists, where their familiar neurology team is.  That will make it easier to adjust meds, and view this from the perspective of potentially being a neurological issue rather than a random respiratory issue.  

J is handling this one for now, and I am home with K and N.  K had a good evening and was in bed on time.  N is snoring beside me.  I was on the phone with one of the neurologists for nearly an hour this evening.  She understands treating the respiratory issue is priority 1 for now, but that I also have concern about where things have been headed.  I’ve been worried for weeks that we are starting to see some decline in Landon.  But it is nearly impossible to sort through what is an illness, what is over-medicating, and what is deterioration caused by Liss.  Either way, patience will be important, yet a challenge.  We will learn more in the coming days.  In the meantime, he is in good hands.

Home Sweet Home

We’re home!  We actually arrived home on Friday.  If you were unaware of that, and found yourself unable to enjoy the NFL games today because you were wondering if we were home, or if I was still orangutan gazing, please consider following TwoIfbyFaith on facebook.  I just hadn’t found the time to get back on here!

Friday morning rounds went well, and we were home by 4:00 pm.  Both boys are still spitting up, but they are all in all doing well.  They stopped being contagious a while ago, we are just working on getting up to full strength.  With their pace, and overall weakness, that might take weeks.  We are continuing the breathing treatments 1-2 times a day as needed, and as mentioned before, are exclusively feeding via NG tube for now.   The boys are still very sleepy.  I know part of this is due to illness, but I also continue to believe part of it is due to the med changes.  We have follow-up neuro visits scheduled, and we should begin pulling back on Sabril soon.  I’m curious to see what other next steps they have in mind.

Nonetheless, we are all so grateful to be home and together.  Saturday started with a nurse visit, then turned in to a lazy day at home.  We ventured out to church today.  We are relatively new there, so many of our seat neighbors don’t know details about the boys.  There, just like anywhere I go with them in public, they are just cute twins, and strangers can’t help but comment on how well-behaved, quiet, and…sleepy…they are.  But generally no one has any idea there is more to the story.  Today the feeding tubes provided a clue.   And led to a question, which led to a discussion.  I saw sadness and heartache for the boys through the fresh eyes of a kind gentleman.  And it really hit home.  The last few days have been a mix of emotions.  I’m thankful the boys came out of their first illness related hospitalization like fighters, yet I’m scared to death of how the winter will go.  Truth be told, I’m scared fairly often.  But I think it’s acknowledging that vulnerability that gives us the freedom to live each day to the fullest.  I’m not frozen by fear, but I’m emboldened by it.  I’m not running in fear, but I’m challenged by it.  Challenged to make the most of each day, each moment.  Challenged to fight for these boys.  Challenged to allow my heart to wander around, also vulnerable.

“Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking outside your body”
― Elizabeth Stone

Almost time to go!

Almost time to go!

Nolan getting some "fast food" before hitting the road.

Nolan getting some “fast food” before hitting the road.

EXIT!

EXIT!

Med time at home.

Med time at home.

Movie night!

Movie night!

Nolan was too excited to sleep.

Nolan was too excited to sleep.

Landon looking so big.

Landon looking so big.

We're doing a lot of laundry...

We’re doing a lot of laundry…

Sleeping N

Sleeping N

Sleeping L

Sleeping L

 

And finally, this one should have been captioned “3 wigglers”…

Spider Man PJ Party!

 

 

 

 

Thursday Update

Well…we are still here.  But I swear we are making progress.

 

Landon is completely off of IV fluids now, and despite spitting up more than the medical team would have hoped today, he is still staying hydrated, and producing enough wet diapers.  Provided there are no setbacks…I think he will go home tomorrow.  I’ve thought that before.  I’ve been wrong before.  We’ll see.

 

Nolan and I got in to a good rhythm today.  The feeding tube is surprisingly easy to handle.  More on that another time.

 

I learned that I can see the zoo, and that the orangutan exhibit in particular is visible from my window.   Despite a lot of effort, there have been no sightings.   In related news, my productivity is down.  In other related news, the orangutans reported frequent sightings of an 8th floor mom hovering awkwardly in front of her window.

 

All in all, the day went well.  Nolan and I finally strolled down to the Ronald McDonald Room for dinner.  You can’t leave with the food, so I made a salad and a plate and sat down, feeling relax, then noticed Nolan spit out a mouthful of blood.

(don’t panic)

(well, panic a little, because I did)

I threw my food right in the trash, mumbled something to a stranger who is probably still talking about “that weird wasteful mom” and bolted back upstairs.  Is it his lungs?  Something wrong with his tube?   I asked one of the nurses to take a look, and another one confirmed he did that a few nights ago.  It seems he isn’t quite used to one of his bottom teeth, and keeps either nipping his tongue, or bumping his upper gums.

If I were to make a list of things I don’t need right now, Nolan coughing up blood would likely be on the list.  Nonetheless, it seems we are dealing with more of a wayward tooth.  I’m trying to get him to chew on a pacifier rather than himself, but he disagrees.

My conclusion is it is time for us to go, before I become a complete mom-ochondria, or Nolan finds another reason to get attention from nurses.

 

Being here leads to a lot of reflecting, so I’d like to do another “this time last year”.  Here is a post from October 14th of last year.  Held in the Storm.

Thanks as always for caring about these boys, come rain or shine.