Feelin' the Love

All three kings had some fun today. . . William and Edmund monkeyed around with Daddy and Uncle Matt:

. . . and we took them to see the Karate Kid.

Meanwhile, Henry had Grammy and Paw Paw (my parents) all to himself.  They are heading home tomorrow and will be missed so much.  I don't know what we would have done without them . . . they are a huge source of strength and support.  Here's Henry giving them some thank you hugs and kissies:

We have been blessed beyond measure by the love and support of family and friends.  From the local visitors bringing immediate needs like phone chargers, clean clothes, an extra car . . . to those offering coffee and "please-come-now-on-call-friend-therapy" . . . to the visitors from afar (Louisiana, California, Ohio) . . . we have felt so loved and cared for. THANK YOU for the meals, the babysitting, the cards and gifts, the packages for our big boys . . . all of these things - the many ways you are filling needs before we even have time to realize them - have been such an encouragement to us.  I'm so thankful for the connection to people online as we continue to spend lonely nights here in the hospital.  Above all, thank you for your prayers.  We do believe that God has heard the cries of His people asking to heal Henry.  Of course there is no way to actually measure prayer, but I have a sense that this effort was enormous.  I do believe all continents are accounted for save Antarctica (please, Antarcticans, correct me if I'm wrong).  And this vision of people in all parts of the world collectively sending up pleas for our boy . . . it brings me to tears.  We love him so much.  He is a gift and a miracle.

Weaning

So . . . when is he coming home?  This is the question on everyone's minds.  For the past two days, there has been talk of sending him over to an inpatient rehabilitation program.  We had mixed feelings about that idea, because it includes at least 3 hours a day of intensive therapy.  For certain, Henry is not back to where he was, and it may be a long road to regain some of the skills he already had.  But he tires so easily that it seems excessive for him.  Still, I was willing to give it a try if it meant that we would still be able to have all the resources of a hospital surrounding him. 

Until last night, they were weaning him off of his oxygen.  Two nights ago, he only needed a small amount for about an hour.  Last night, he never needed it!!

He is also weaning off of his pain medications.  This is something we can do at home, but I have felt more comfortable being here for it since he has shown signs of withdrawal and they have made changes to the dose accordingly. 

He is also learning how to use the bottle again.  Yesterday, he took three 2 oz bottles over the course of a day!  His ng tube may be in for a while, and we have been told to prepare ourselves to bring him home with his tube. We would be trained to use the pump and reinsert the tube if needed (he's getting the hang of hooking the small, untaped part of the tube with his finger and trying to pull it out).  Again, I know we can do it, but we've had one nurse insert his ng tube into his lung - fortunately an x-ray showed the error before it became a problem.  Without an x-ray, I'm not sure I'd feel comfortable doing it myself!

Today, they have determined that the inpatient rehab program is not the best fit for him.  Their best guess is that he will be here through the weekend and possibly be discharged on Monday.  Henry is probably ready to leave the confines of the hospital . . . It's MOMMY who needs to be weaned!

Smiles!

Look at my happy boy at 1 am!  He sure knows how to cheer up a sleepy Mommy.

What Happened?

We'll always wonder what happened.  How did he get so sick?  What made Henry go from this:

to this (this is only Day 4 -- I'm sparing you the worst photos because I can't bear to put them online):

in such a short period of time?

No one knows.  Here we are at one of the top hospitals in the country, but no matter how amazing the doctors are, they are the first to admit that they don't have all the answers.  And Henry's case has been called a "head scratcher" by numerous physicians.  Those are not the words any parent wants to hear. . . we would like a clear diagnosis and plan of treatment, of course.  But all they can do is put their heads together and give us their best guess.

From the beginning, they have said, "This is probably viral," but the only virus to test positive was rhinovirus.  On Day 5, due to his rash and persistent fever, they began to consider Kawasaki Disease, which is not viral.  It also does not have a definitive test, which makes it very difficult to diagnose.  Instead, it's a constellation of symptoms that fit together and point towards the condition.  Henry has had several of the symptoms of Kawasaki, but not all of them (and some of the most obvious symptoms were missing).  His blood work, for the most part, has not pointed to Kawasaki (but in some ways it has, adding to the confusion).  It was explained to me on Day 5 that they needed to determine whether this was Kawasaki before Day 10, for after Day 10 a multitude of effects could occur (affecting his heart, liver and other vital organs).  There is a treatment for Kawasaki that can be highly effective if given before Day 10.

By Day 6, most of the doctors believed this was not Kawasaki and decided not to treat him for that.  Also on Day 6, his chest x-ray showed pneumonia, his breathing became even more labored, he was showing signs of sepsis and he was admitted to the PICU in the middle of the night.  Diagnosis needed to take a back seat to maintaining and saving his life.  And they did, praise God.

However, diagnosis became important again when Henry went from this (much better):


back to this:

in just 12 hours.  The rash came back and we started to feel like we had backtracked to Day 3 all over again.  It was so hard not to begin to lose hope.  We couldn't bear to walk down that road again.  Not when we had just gotten him back.  And worst of all, doctors began revisiting Kawasaki.  Now.  On Day 17.  A full week after treatment would have been effective in preventing serious heart problems (like coronary artery aneurysms), liver problems, etc.  To say the least, we were scared.  And angry.  Teams of doctors from Dermatology, Infectious Disease and Cardiology were called in to look at him yesterday, and for the FIRST time, they all wanted to see the photos I have been taking every day (which show the progression of the rash).  And of course, there was no consensus.  Dermatology said it's probably Kawasaki.  Infectious Disease said they'd bet not.  Cardiology said definitely not.  We didn't know whether to be relieved that most of them thought it wasn't Kawasaki or just frustrated that NO ONE KNOWS.  At that point, we asked for an echocardiogram.  They didn't feel the echo was necessary after determining that it's "probably not Kawasaki," but in my opinion, why WOULDN'T we do one, just to be sure that there were no ill effects on his heart?  We needed to know, if for no other reason than to put OUR hearts to rest.  And it did.  His echo was clear.  And we are thankful.

And yes, still frustrated.  We don't know why his rash returned on Saturday (perhaps it was a reaction to meds, perhaps it had been blocked by steroids for a few days and returned, perhaps . . . perhaps . . . ). But we are coming to accept the fact that their "best guess" is all we will ever have.  At this point, they seem to be sticking to the diagnosis of rhinovirus with a secondary superinfection of Staph Aurea.  They have seen cases of Staph Aurea which, oddly enough, mimic the rash of Kawasaki Disease.  This, in the end, sounds like the most reasonable explanation.  The rash appears to be slowly disappearing and I'm happy to report that Henry now looks like this:

Regardless of the diagnosis, Henry is HEALING.  And that, of course, is the most important news of all.  

Leaps and Bounds

William was able to visit yesterday! He is our sensitive soul who has an extra special love for his baby brother. He asked me a few days ago if Henry was going to die. At that time, I didn't have an answer for him. He knows enough about Sydney to know that we have had such a loss before and that babies can die. Perhaps this contributed to the immense anxiety he has experienced in the past two weeks. I was so thankful that Henry was well enough yesterday (and looked like himself enough) for William to see him and know that he is getting better.

The big news is that Henry came off the ventilator today! I can hardly believe it. Just one week ago, we were bracing ourselves for the worst. The ugly words were "pneumonia, sepsis, very sick baby, can't promise you anything, very very ill." Today we are hearing new words like "fabulous, amazing, improvement, good numbers, extubate." I can't even begin to describe our emotions and thankfulness. Last week we prayed for a miracle. Today I finally believe we have witnessed one.

Here is our miracle baby looking a lot more like himself:

Henry's fight isn't over, but we do believe that he is winning!!  Please keep praying for him and join us in thanking God for the huge steps he has taken this week.

Not Me

I open my eyes to darkness and my confusion is replaced by a reluctant awareness of where I am. The Connelly Center. Room 4. Far removed from the bustling noises and lights of the hospital. A separate, silent wing behind double doors which lead to a large, dark sitting room full of sofas. Beyond that is a locked door leading to the five private rooms given to those of us who would otherwise not sleep for days or weeks on end.

It's so quiet that I couldn't handle it last week and chose to go back to the comforting beeps and ventilator breaths of Henry's room. When Scott arrived from Bolivia, I was finally able to rest here. Now we take turns, night after night, so that one of us can sleep without interruption.

Tonight is my turn. But it's 2 am as the phone rings down the hall and I'm suddenly wide awake. I think of the other four and my breath catches as I realize that no one is answering and it might be for me. Perhaps all of us are hearing what I hear in my head: "Not me, not me, not me . . . ." There are no voices as the phone stops ringing, but a door opens at the end of the hallway and I wonder if it's the guard who mans this wing, coming to rouse one of us. "Not me, not me, not me . . . " I hear a soft knock, but not on my door.

(Written at 3 am because I couldn't sleep)

Does it sound too dramatic? It was.

This place . . . we have seen scenes here I wish I had never seen. I was able to block them out the first week . . . the other families who are going through their own worst days too. But this week, I see them. The couple standing outside the ER screaming and placing blame on each other. The young boy with no hair being wheeled into the hospital, recognizing where he is, becoming hysterical and terrified as his parents try to talk him into letting them make the pain go away. The mother sobbing in the waiting area of the PICU as her own mother tries to comfort her. I saw that woman and I've been that woman.

I will not miss this place.

Big Step and Baby Steps

Yesterday was a bigger day than usual. After I posted the "Day 12" blog, the doctors came for rounds and decided to switch Henry back to the ventilator after all. We were surprised, but have gained such a confidence in the Attending Physician that we felt fine about the decision. And it was a good one! Henry was switched back to the vent yesterday morning and was able to come off the paralytic medication at the same time. We hadn't realized we would see him wake up from his medical "slumber" yesterday, so it was really exciting when he began to open his eyes and realize we were there. He focused on each of us and even started to try to cry when he made eye contact (it was SO heartbreaking . . . especially as he struggled with the ventilator while crying . . . because we can't pick him up to comfort him).

He has been alert for long intervals since then, and it has been a joy to catch a glimpse of our Henry behind all the wires, tubes and swelling. He is losing some of the swelling, especially in his face, but his body has a long way to go. He weighs an extra 3 kilos right now, which is over 30% of his body weight. The lasix is helping him lose the edema, but it's not a quick process.

We were on a bit of a high yesterday as such a BIG step was taken, and I have to admit I've hit a low today. It felt like the pace was picking up and giving us hope yesterday, which all came to a screeching halt as not much has changed today, but I do remind myself that no news is still good news at this stage. We're back to baby steps today, but we are so thankful that they are in the right direction.