And That's What You Missed On . . .

. . . Glee! No, I'm not going to post about Glee (though I am counting down the days . . . is anyone else a Gleek around here?).


What I AM going to do is try to recap our summer in little snippets and snapshots, attempting to showcase the highs and lows and get you up to speed, Glee Style. So, if you'll humor me, this post is created to be speed-read. Aaaaand, go:

So Henry got home from the hospital and everything was going SO well (despite the ng tube) that we went to South Carolina for a vacation with friends and had a great time . . .





We also had lots of visitors and cheered for the Phillies . . .




But after a while the ng tube was getting harder to insert so we finally got frustrated and brought Henry back to the hospital, where they discovered that he has a stricture making his esophagus as "narrow as a coffee stirrer" . . .



So he had a G tube put in, can't have anything by mouth, and has many procedures coming up to attempt to dilate his esophagus . . .



We celebrated Henry's first birthday in August and let him have a taste of the frosting (shhh) which he liked SO much that he threw a Royal Fit when we took it away . . .




We're all really tired from such an eventful summer . . .



Thankfully, Mommy got away for a girls weekend . . .



And now school is starting, therapies are in full swing, and we're getting ready for the Buddy Walk in a few weeks (Go Team Oh Henry)!



And that's what you missed . . .

Home!

I have been overwhelmed by the transition and have not had a chance to post, but Henry has been home for two weeks and is doing well! He is using an ng tube for all feedings until we have his next swallow study done on Aug. 3rd. Praying for good news that day, as we would love to move back to the bottle and food soon!

I will try to post a longer update soon . . . . Thank you for all of your caring words!

Making the Best of Boring

Hi, I'm Henry.  I've been in the hospital for four weeks.  And I'm bored.

So while my brothers are at Grammy and Paw Paw's house doing this . . .

My "big day out" going to the hospital atrium looks like this . . .

But I'm making the best of it.  I went outside yesterday with Mommy, Daddy and Uncle Matt, and I felt the wind in my hair.

I pulled my ng tube out when I got really bored yesterday, and I smiled and laughed.  Too bad Mommy and Daddy didn't get a picture of THAT.

So I'm having some fun.  I even had Music Therapy today!

They keep saying I will get to go home soon.  I hear it won't be today, but I'm sure I'll find something to do while I wait!

Setbacks

We thought today would be the day, but we're not home yet.  And it sure looks like we won't be until the end of the week.  Henry has had some setbacks over the weekend, including low grade fevers, the recurrence of a slight rash, a big bout of vomiting and several days of . . . hmm, I keep trying to think of the most blog-friendly way to say "diarrhea," but there doesn't seem to be one.  Feel free to leave suggestions in the comment box. ;)

The vomiting/rash combo gave me flashbacks about Day One, and I had a hard time holding it together when the resident said, "But he looks fine right now!"  Some day I'm sure I'll blog all about the frustrations of our first week here, but the theme of the week was, "He's fine, Mom!  It's just a virus!  He'll turn around by tomorrow!  You'll see!"  That is, until Day Six when he was moved to the PICU.  I know it's unlikely that the cycle would repeat, but after what we have been through, it was hard not to let anxiety get the best of me.  The good news is that the vomiting, rash and fever are gone.  Which leaves us with the . . . watery stools?  At first, we suspected that it was caused by the thickener we were adding to his formula (a necessity because he has been choking on thin liquids, probably as a result of being intubated for so long).  We tried some cereal as a replacement thickener, which seemed to cause or at least exacerbate the vomiting.  So we discontinued both thickeners and gave him a break from the bottle yesterday. 

In the meantime, he was scheduled for a modified barium swallow/videofluoroscopy this morning, which showed exactly where the liquid goes when he takes a bottle.  They offered him several different thicknesses to see if he could safely drink any of them.  Unfortunately, Henry aspirated every one, which means that he will be off the bottle for 6 - 8 weeks. I knew we would probably come home with the ng tube, but I never imagined we would have to go so long without offering him anything by mouth! After that, he will need to have another swallow study to see if there has been any improvement.  If not, we wait again and try again, putting several weeks in between each swallow study to avoid overexposure to radiation.  Good times.

Trust me, I know I should just be thankful he is here.  I am grateful for the miraculous recovery he is making.  But this setback was hard to swallow.  No pun intended actually, but it seems a fitting end to this post.

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.

Day 12

Henry had another uneventful night for the most part. Yesterday morning, the doctors were hopeful that we would be able to transition him back to the ventilator (from the oscillator), but he had some negative reactions to being suctioned and didn't recover fully (yet) for them to make the move. It makes me laugh a little . . . Last week when we were here and Henry was awake and feisty, they would try to suction his nose and he would arch back and put up quite a fight. It always took at least two people to hold him down. I took it as a great sign of the fight inside my usually mild-mannered little man! As much as I wanted to see him transition in a step towards breathing on his own last night, I LOVE the evidence that he still hates suctioning and has that fighting streak in him (even when he is fully sedated and paralyzed by meds). We just need to convince him that it's for his own good I guess. ;) I'm also happy that a slight change in his numbers put the plan on pause. The nurses and doctors are quick to react and are so careful to understand what caused a change and how to even things out again. It's amazing. The nurses work so hard, which helps us to rest when we can.

Scott and I are taking turns sleeping in a special parent sleep room the hospital provides. There are only five of these rooms and they are given to parents of the most critically ill patients. While I am grateful for the quiet dark space and bed, I get a pit in my stomach when I consider how big this hospital is and yet we are always given a key.

We continue to be amazed by the generous ways people are reaching out to us to help with meals, play dates for our big boys, and other needs. We can feel the prayers surrounding us and are in awe when people who don't even know us tell us they are fasting and praying for our boy. We definitely do not feel alone.

Our big boys are on our minds a lot. We were able to visit them at home last night for a while and give them their baths and put them to bed. It was wonderful to spend time with them, but being in my house with evidence of Henry in every room was almost unbearable. His pack and play, high chair, and toys made me long for our normal life back. Some of you have mentioned my post from January (Boring, In a Good Way) and how striking it is that we are in such a different place.

Many people have asked if Henry's Down Syndrome has contributed to this situation in any way. It's a great question and not one that doctors have been able to answer. Last week, before he was in the PICU, I asked it many times and the doctors there brushed it off (as they brushed off many concerns) and simply said no. But his PICU doctors seem to think that it has contributed to the extremity of his reaction. The doctor who is the "main boss" (according to others here) is a man of great knowledge and experience, and he told me he has seen many other kids with T21 who have had serious reactions to common viruses. He believes this is probably the case for Henry. Surprisingly, they have tested for numerous viruses and only one has been positive: rhinovirus. Sound familiar? It's the common cold. They have not ruled out that there may be another virus on top of that, but nothing else has shown itself in the blood tests, and the PICU doctors have said that some kids actually just have horrible reactions to certain strains of rhinovirus. They told me they had many kids this winter who had colds and ended up in the PICU with life-threatening pneumonia, and that some of those kids had Down Syndrome.

We are waiting for the doctors to do their rounds this morning. They usually start with Henry, so they should be here soon. We are thankful to be asked to stand in on rounds and participate.

To leave off on a positive note, one of the residents who has been involved with Henry's care from Day 4 until now had the weekend off. She walked in this morning to check on him as soon as she arrived and said, "Wow, he is doing great compared to where we were on Friday." I have to hold on to that and hope that this trajectory will continue.

Thank you for all of your prayers and the many ways you are helping us.

Day 11

Henry had a good night last night. I am beginning to feel like I need to come up with a new way to say that. I don't want to mislead anyone with the word "good." It's so very relative. Our new definition of "good" is that nothing scary happened last night. He doesn't appear to be declining. He is stable and showing very small improvements.

A clear picture of Henry is that he is on an oscillator, which has taken over the job of breathing for him so that his body can rest while it fights off the numerous infections which are threatening his life. He is heavily sedated and often needs additional medicine to be paralyzed because sometimes he starts to move around a bit and they have noticed changes in his vitals when this happens. We really need for him to just rest peacefully as the many treatments (antibiotics, blood transfusions, platelets, etc) do their work.

Our sweet boy does not look like himself right now. His whole body is swollen from the medications, and while they can give him (and have given) some lasix for this, it's a delicate balance and they have to watch his blood pressure, heart rate, oxygen saturation, ventilation, etc. One affects the other, which affects the other and so on. Sort of like "If You Give a Pig a Pancake," but not nearly as much fun.

The diagnosis of what caused all this (a virus is suspected but not confirmed) is still a mystery and may always be. Last week, diagnosis seemed important. Now, as I watch my baby fight for his life, I don't care what the initial cause may have been. I'm sure I'll care again later, but for now I just want my Henry back.

Scott and I feel so loved and truly appreciate all of the prayers and concern from our dear friends and family and what feels like thousands of others who are lifting us up.

Prayer Requests:
* Continued improvement. We are taking baby steps, but they are in the right direction.
* Our older boys, who haven't seen us much and are also very worried about the brother they adore.
* Strength and endurance for us and for my mom who is watching the kids so much of the time while she is dealing with the emotional toll as well.

Please Pray for our Boy

I am sending out an urgent request for everyone who still checks this blog to PLEASE PRAY FOR HENRY! He was admitted to the hospital 9 days ago for symptoms of dehydration due to vomiting. Fever and a rash persisted and worsened over the course of a week. By day six, Henry was fighting for his life. He is in the PICU and continues to fight. There is a raging infection in his lungs and his blood, in addition to a staph infection in his trachea. Henry is only 9 months old. He is the joy of our lives. His brothers adore him. We are devastated at the thought of losing our precious boy. PLEASE PRAY! Last night, Henry showed some small improvements. We are clinging to hope that this might mean that he is on the road to recovery, but the doctors are being very cautious and have reminded us often that he is not out of the woods.

I will try to update here if people seem to be reading the blog.

The photo above was taken about 24 hours before we ended up in the ER.

New Mama

Please, please go read this beautifully written (and photographed) blog about a new Mom of a child with Down Syndrome:

http://enjoyingthesmallthings.blogspot.com/2010/01/nella-cordelia-birth-story.html

Touring Europe

Surprise! I finally have something to say today because this week has been a bit overwhelming.

Another mom from the online Down syndrome community posted a status on Facebook this afternoon saying she wished she could leave "Holland" for a few days. The Holland reference is a common one in DS circles because of a poem by Emily Perl Kingsley which compares the journey of parenting a child with disabilities to a trip to Holland (when you were expecting to be in Italy).

I haven't felt like Henry's Down syndrome has been a source of stress for us, and admittedly we are some of the lucky ones. So far, he is in excellent health with no heart problems, vision, hearing or gastrointestinal issues. He is meeting most of his milestones and is by far the easiest baby I've had. But this week, I can definitely understand this other mom's sentiment that Holland can be a bit too much sometimes!

It's not just Holland -- I'm juggling too much. People ask me how I do it all (working from home, going to job interviews, and trying to keep my kids happy and healthy while caring for our home, bills, meals and mounds of laundry) and I often fear that I just don't do it all WELL. I know I'm in good company -- most of you moms out there can relate to all of this, right?

Despite my background and experience as a Special Ed teacher, my busy mom brain starts to spin when a therapist is giving me a verbal list of 100 things to try this week when I'm playing with Henry. It spins again when his doctor asks me exactly how much he is eating and whether we've followed up with the feeding clinic and the developmental clinic (I could barely get to his well visit on time today, let alone consider making appointments anywhere else!). Again when we arrived late this morning for OT because our visit to the pediatrician ran over due to health concerns with one of the other boys. Again when therapists are giving me differing opinions and advice. Again when I realize I've missed a Kindergarten event because I never went through the pile of papers. And again and again and again.

How do I do it all? I don't! Some things just get set aside. I'll catch up this weekend on bills and laundry and cleaning. I'll say yes to more play dates even when we don't have time, because I need time with other moms as much as my kids need time with friends. I'll allow myself the luxury of therapeutically blogging to get it all out. I'll give myself some grace and try to slow down and enjoy this trip to Holland and Italy and all the stops along the way.

Boring, In a Good Way

I've been trying to think of what to blog about now that the dust (both literal and figurative) has settled a bit around here. I set out to create a blog in order to share my journey, tell my story . . . but I have to be honest with you . . . there isn't much to tell! Henry is 4 1/2 months old, healthy and wonderful! He's rolling over, grasping his hands together, cooing and laughing. It's normal babyhood around here. I wake up, change a lot of diapers, do a lot of laundry, clean a lot of messes.

Boring, right? What a blessing. I wouldn't have it any other way!