Great PT Today!

Khyle had a great physical therapy session at home today. We have been working with him in a new (borrowed) chair called a Rifton and it helps to keep Khyle sitting firmly upright. It also has a tray on the front that is perfect for toys and such. He went 40 minutes in the chair today engaging with me & the therapist, Libby. Yay Khylie boy!!

Here Khyle sits unaided on the floor leaning forward--NO ONE IS HOLDING HIM!! He lasted about 4 minutes then got annoyed and I picked him up, but he did NOT fall. GO WARRIOR!!

September News

Khyle is continuing to grow. I can hardly lift him he is so big & that is a very good thing! We started with his new physical therapist Libby & we are doing well. We are trying him in a special chair called a Rifton that helps him sit upright and gain more trunk control. He seems to like the chair and does not tire easily in it, which is very good. Our PT goals are head control, upright sitting and increased mobility.

Coming up we will revisit the GI/Nutrition clinic and also see neurosurgeon Dr. Keating for a 3-month checkup. Also we will go for a general visit to the Craniofacial Clinic and check in with ENT.

Still searching for a pediatrician & home medical supplies provider. I hate the feeling that these medical supply companies are out to fleece us but sadly that is true of many of them. Online I can buy a box of feeding bags for Khyle's pump for about $250. The supply company we were using is charging $560 for the same case of bags!? Unfortunately we have not found another company that is in our network but must keep trying.

Maya is in first grade--yay! and is loving it. The fall weather is so beautiful, cool but sunny. We hope to go for a ride in the Shenandoah Mountains to view the changing of the leaves. Planning to stay in Maryland for Christmas and this does cause Maya some grief but we hope we can have lots of fun. Praying for no blizzards.

Love to all the family & you wonderful friends who keep us so encouraged!! We are blessed!

--check out 'Khyle The Warrior' on Facebook too

Warrior Update

Sorry I haven't posted in over a month, so here goes the update....

PNEUMONIA

Khyle currently has pneumonia. It got worse before it got better, we still have 4 doses of antibiotics to finish but we hope we are at the end of this little crisis. This has been the only illness since we left the hospital on June 17th so I am grateful for that and also for the fact that they did not admit it. A few rough nights at home but I much prefer keeping him AT HOME as long as I have all the equipment/meds to do the job right.

INSURANCE

We are unfortunately going through an insurance change. The new provider seems a bit inferior and we are losing our pediatrician for Khyle & Maya. The timing of the change created quite a lot of stress for me because I had to get Maya's yearly check-up and immunizations done so she can go back to school in one week. It cost lots of money I didn't have and now we are in a frantic hunt for a doctor who can manage Khyle and is in our network. I have a lead on a few people so will go and do some consultations. Still have not found providers in my network for medical equipment and supplies, so the search continues.

NEW THERAPIST

Sadly we have lost one of our favorite people in Khyle's chain of care--Melody our physical therapist. She moved to be with her family and we are devastated but we start with a new PT in 2 weeks. We are looking forward to another great lady who will fall madly in love with our little warrior.

PROGRESS

I do not know Khyle's current weight but we are certain he has gained weight. I think he is about 23 lbs (just a guess) but he actually has fat on his legs and his cheeks are chubby again. We are happy with the new feeding system now via pump. It works well and the weight gain is awesome. It is very expense to maintain though and so we hope we can figure out something manageable going forward.

Our PT did think she saw improvement in Khyle since the cranial surgery. She thought he was more cooperative & alert. She suggested that the next 3 months could prove tremendous growth for Khyle in terms of his physical and cognitive development.

MANY THANKS

In case we have not already thanked all of you who so lovingly helped us out this summer then I wish to say again that you were awesome!! So many of you prayed, made meals, gave us rides to/from hospital and showered us with love and encouragement. To our family at Rockville Assembly of God (RAG) who gave money, time and prayer, God's blessings on you for taking such good care of us. To my family and friends, thanks for praying, visiting, calling & just being there for us. Even though we were expecting to go to Children's for the cranial surgery it was very rough being admitted for malnourishment and spending over 21 days there, also having the big setback we did with the surgery was scary. Thank you for being there!

FUNDRAISING

In a few weeks Quincy and I will begin a fundraising campaign because the medical expenses, even with insurance, are tremendous. The insurance pays 80% so we have the 20% balance to pay on all hospitalizations. Also there are a lot of equipment & supplies not covered by our insurance. Please keep an eye out for that posting/email and be prayerful as to whether you may consider giving. But more on that later...

We are happy the boy is home, growing and succeeding. We are happy to be in this area where we are able to get such great medical care and we are thankful for our RAG & Fourth families who are God's arms around us. We miss our family tremendously and hope to see you soon, until then FB & email will have to suffice. Be blessed everyone and as always keep us in your prayers.

Getting Back to Normal

We went back to see Dr. Keating, the neurosurgeon, yesterday for the first time since discharge. He was very pleased with Khyle's progress. The incision is healed nicely and he thought Khyle was alert and responsive. We talked a bit and he says we should come back in 3 months for another follow-up.

This morning Miss Bev & Miss Liz came to the house and we resumed Khyle's therapy sessions. Beverly Upshur is the Vision Specialist and she tells us how to best engage Khyle despite his vision impairment. She teaches us a lot about how to 'read' what he is 'saying'--to recognize his attempts at language. We feel Khyle communicates a lot with us through his gestures and behavior. It is important that we not let him resort to crying & throwing tantrums to get what he wants. Liz Snead is the Occupational Therapist and she works alot with Khyle's fine motor skills. We work with lots of toys, reaching & grabbing and having him engage with the world through toys. Khyle is much more partial to people, Mom & Dad especially, but we want him to know the world is more than just us. It is also important for him to learn cause & effect--that 'if he pushes this button the music will play'. Then he understands that he is making something happen. He has the power to accomplish things on his own. Khyle is now on a muscle relaxant called Baclofen and we see an improvement in his overall tone which helps with movement and play.

Today's session was good, just starting up again since the surgery and we are setting new goals for the year--the calendar year follows the school year, August to Summer. So now is a good time for reevaluating.

We are very much trying to get back to our regular routine. I would say 'normal' but our life is far from normal! There are many changes coming and that is another post entirely. But we are well and Khyle is doing AMAZING!

Good Doctor's Visit

We had our first doctor's visit back at Children's since our discharge yesterday. We went back to see the GI nurse to evaluate Khyle's nutrition and weight. I was very happy he didn't lose any weight, he's still over 19 lbs, very close to 20 but they had hoped he had gained more. We hope to keep beefing him up but it may go slower at home.

We did change his feeding tube from a 12fr (size) g-tube to a 14fr Mic-E button. This is smaller and less obtrusive. You do have to attach an extra tube for hooking up to the feeding pump but can remove it when he is not eating and you don't have something dangling down that Khyle can pull out. Many of you know that Khyle pulled his feeding tube out 3 times now, the last time resulting in emergency stomach surgery & a 10-day spell at CNMC. But being his usual self he did 'unlock' the feeding cord this morning, but we caught it early and put it back on. He was soooo pleased with himself :) I am happy with the increase in size and hope this will prevent clogging. We were having some serious clogs with the feeding pump last week and I was exasperated so they bumped him up in size. He used to have a 14 fr. before the surgery in March and we had very few blocks.

We will be going back to the neurosurgeon Dr. Keating on July 17th for a checkup on the cranium. Not sure if we will resume in-home physical therapy before then.

I would like to ask for your payers concerning our new insurance. The parent company changed providers and it means that some of our doctors are suddenly 'out of network'. We are prayerful that all will be worked out, but please continue to pray.

Khyle is doing well, will post some new pictures soon. God bless.

One Week Home

It's been one week since Khyle came home and we are so enjoying him being here & not running to the hospital everyday. You can see that he is very comfortable being in his own bed, having us at his beck and call and not having doctors & nurses poking & prodding him every minute. No needles, no x-rays, no changing trach ties at 6am in the morning & very little equipment beeping. Of course we are over the moon to see his sweet little face in the bed next to ours at night and tucking him under our arms to hang out with us in the evenings.

We had some excitement with his feeding tube being blocked twice already but we were able to clear it. We're working with tons of new medical equipment for this, that and the other thing. We are learning how to (and not to) navigate through the insurance maze for someone with Khyle's extensive medical needs (& costs) and we had a lovely visit from a home healthcare nurse to go over everything we do with Khyle, making sure we are doing our very best. I think we got an 'A' on our report card for that and I must give a lot of the credit to Pat Bell who helps me take care of Khyle everyday.

We will have several follow-up appointments at Children's in July and I am also on the search for a new Pediatrician for Khyle & Maya because of a change in our insurance provider.

We will keep you posted on the doctors' reports for Khyle's progress. So far, so good. Praise God from whom all blessings flow.

Happy Birthday Little Warrior!!

Even Warriors take a little time to celebrate the great days. Khyle is 3 years old today!!

Yummy cake

Can we eat it all?!

Sweet birthday cards & gifts

WE ARE HOME!!!!!!

Praise God, we are home with Khyle!! We got here just after 8pm and he is already settling in. Oh we have so much to say but for now, Thank you God, thanks to friends & family & those of you who prayed so earnestly.

Equipment Bugs...

Friends and family,

Please pray that the folks at our insurance company get their act together. We've finally been told we can bring the boy home as soon as we get the equipment set up, which should have been days ago. However, the company that I am insured by is going through "changes" and we are being caught in the middle, so we need this to get straight and get straight now!

To that end, we're asking for your prayers.

Thanks.

Warrior Pictures

Have You Ever Seen A Sweeter Face?

That's My Boy!

Getting hair washed

Almost asleep

What a mug!

[Cue the "Jeopardy" time track...]

So. He's come through two surgeries on his head in two days with barely a grimace on his little face. Radical, extensive, invasive surgery - no problem. Eat, sleep and poop, like all babies do? Problem. By now, Suzette and I have explained why his digestive system is taking a while to reboot and get up to full operating speed, but to tell the truth, we're both tired of the explanation. We just want the boy home. So. [Cue "The Prayer" from "Les Mis"...]

Dear God, please bring my son home. Soon. Amen.

[Cue the ticking clock...]

Issues

Khyle is still having bowel issues. No food last night, just Pedialite & IV fluids. Started 1/2 strength Pediasure an hour ago, praying for the best. He needs to be eating, having regular bm's and no swelling of abdomen.

We may move back to GI ward today, still in Surgical. The cranial wound is healing well, the head looks good. Still some swelling but going down nicely.

The warrior has a birthday on Friday, yes in 2 days, need I say how much we do NOT want to celebrate it at Children's Hospital.

But it will be what it will be, as God wills. Hanging in here until that sweet day...

One More Day?

The mantra we are getting around here is 'Just one more day', then we can go home. It is that elusive 'tomorrow that never comes'. Of course it is Khyle who will dictate when we go home, but NOT TODAY.

His stomach was distended again this morning, so they stopped his feeds and put him back on the drip. There are lots of theories but basically Khyle's digestive system has not acclimatized post-surgery. He needs to eat & poop, eat & poop. But he gets constipated, starts spitting up, tummy swells, must stop food and wait, give enema and wait some more.

So at DAY 19 we are still waiting....

I am so glad I slept home on Sunday night. Maya clung to me like 'white on rice' like they say and it did my heart good to love on her and be loved in return. Quincy is back to work tomorrow, thus I am the full regiment tonight. Well me Jesus, God & the Holy Ghost that is :)

Keep the prayers coming friends, thanks!

Battle Photos

Very swollen yesterday 6/13

Daddy comfort

It's my right to FUSS!

My Biggest Battle Scar!!

Surgery Picture Gallery

Last night with full head of hair

Sending my boy to surgery--- Post-op - First surgery

See 'buckled' plate 6/10 ---Dr. Keating says 'Do-over'

Just a few shots --will load more later.

Food! Glorious Food!

The doctors have started the little Warrior back on his food again, thank God. Right now he's snoozing, and looking like an angry cartoon with his swollen head, but he seems comfy and I know he enjoyed snuggling with me and watching Transformers...AGAIN!

So hopefully we get word tomorrow[Monday] from the case worker that they've worked it out with the insurance people so we can bring Khyle home. That's really all we're waiting for at this point - we'll have to put him on a feeding pump, so we need the insurance to handle the pump and all the acoutrements.

I'm going to hit the hay now, and ruminate on how much I miss Suzette. She went home to give Maya some much needed Mummy time, and while I LOVE the boyz nights, I miss my wife. [A little confessional, but so what? That's what these things are for!]

Tummy Trouble

Okay, I was preparing a much more desperate post--Khyle's tummy was hugely swollen and we had to take a x-ray this morning & things did not sound good at all but some relief has come. I interrupted that post because GI came to examine him & miraculously his stomach was almost back to normal and very soft. Pheww!!

A doctor from the general surgery team was in earlier and explained that the x-ray revealed that his larger intestine is 'very enlarged' and it could 'rupture' and they would have an OR prepped for him 'just in case'. She said it very matter-of-factly but I began to get this feeling that maybe I was being 'punked' or I was in an episode of the Twilight zone. Certainly no one was suggesting 3 surgeries in 5 days!!!

Yeah but no less than 8 doctors have been in here to assess him since I started this post, the pediatric surgeon thinks he looks good and may resume food this evening. Until then he will be on IV drip.

Well please continue to pray over his digestive system for all to work well and for him to be eating again soon.

A (Somewhat) Quiet Day

Today we have done our best to be quiet & attempt some much needed rest. We were moved across the hall last night and are finally settled in our room. Khyle slept well last night and although I got up early to catch Khyle's doctors on their rounds, I went back to bed (uh, chair) and Quincy & I both snoozed until after 12 noon!

Khyle is doing well. He is more swollen today but he can still get his eyes open and he is on very little pain medicine. I held him most of the day & Daddy did too. There are still lots of bells alarming & nurses, respiratory therapists etc. coming in to check on him but we are just chillin' & letting Khyle know everything is going to be okay.

We'll probably find a cheesy movie to watch & then hit the hay super early. I miss Maya, I miss holding Khyle without all these tubes & interruptions and I miss my warm bed, but we will endure!

It is great loving this boy. Yes he is a brave and not-so-little warrior and he has conquered me wholly and completely.

New Digs

We have left Pediatric Intensive Care & are now on the 5th floor Neuroscience Ward. It's a quiet, private room and we hope to just cuddle with Khyle until we can go home. I am really hoping to go home on Monday but they were supposed to line up some feeding equipment for us to take with us, a process that was started on the GI ward and is still not complete.

Khyle seems very comfortable. He is snoozing now. Quincy went to pick up the troops from home & we will just hang for a few hours together, family time. I really miss Maya haven't seen her since Wednesday.

I would also pay cash money for SLEEP! I can not express how tired Quincy & both are. I kept getting up this morning to talk to the doctors but would then immediately collapse back into the chair and snooze until the next one came. I am praying for few interruptions tonight.

We are hanging in there. More later...

Battle Scars - A Post By Khyle The Warrior

Its all about battle scars. Right now, I'm laying in my mother's arms and resting up after my last battle, and I just heard Mummy counting my battle scars, and talking about what a Warrior I am. Well, I've thought about it, and I have decided that I AM a warrior. And my battle scars are the measure, the litany of my successful battles. I fought to get back to this world twice when I died nearly three years ago, and I have been fighting ever since. I have battled dragons, and monsters from the deep, so often that my Daddy sings a song about it, and calls it my Warrior's Lullaby.

So. Here I am ruminating on the meaning of battle scars. They are , I think, how one measures the true mettle of a warrior. Is he or she the kind that will fight from the back, from behind the protection of forts, and columns of infantry, allowing others to fall and die in his or her place? Or will he or she face the fight head on, armed only with what he or she can carry, and take the fight to the Enemy? Only a warrior like that can have scars. Only someone who knows how to march into battle at the front of the line can come away with scars and still be proud of them. My scars are the mark of the many battles I have fought. And won.

I am Khyle The Warrior, and I am victorious.

IT IS WELL

The second surgery is completed and Khyle is safe. Titanium plates have replaced the damaged dissolvable ones. There seems to be no reason why this happened. They have never seen this before. We are not pleased Khyle had two surgeries in two days but we are glad that he is here with us now and is comfortable.

Yes our faith is being challenged. Why God, why did this happen and there are no explanations? But we are taking our lead from the book of Job in the mighty Word of God on which we stand. When Job was tested & challenged he turned TO God and not away from God. We fight the good fight and we persevere and yes still lean on God even if we are not satisfied with our present state. Perhaps like in the book of Job our latter years will be greater than our former. We know that we know that we know, that God loves us, loves Khyle & has given him to us. We care for Khyle and ask God for wisdom everyday. Job asks "Should I expect only good from God & never trouble?" We seek God for God and not simply because he blesses us or makes our lives easy.

Thank you all for covering us & our sweet Khyle (and Maya) in prayer. We praise God even in our adversity and we continue to cling to Him and those of you who fellowship with Him.

It is well brethren, it is well.

Just a quick note--we are out of the second surgery & Khyle is fine. He is resting comfortably and the doctors are all still positive about the results of the second procedure. [This is Quincy, finishing something Suzette started. She'll be back with a more detailed post in short order. As for me, its just good to have my little Warrior back under my eyes.]

Unexpected Setback, Back to Surgery

Dear friends, we received the unpleasant news this morning from neurosurgeon Dr. Keating that the plates put in Khyle's skull have collapsed and repair needs to be done. We lost half of the advancement that had been gained and the plates are protruding through his skin and look dangerous (to the skin). Perhaps the dissolving plates were too malleable for Khyle so now titanium plates will be used instead.

Of course we are not happy about any of this. To be going back into surgery so soon.

God is still God. Continue to pray. We have asked God that he gives them wisdom to do only what will work for Khyle.

Praise Shout, and Prayer Request

It has been a very long haul since the boy was born and we began contemplating this surgery. But now that it is done, Khyle seems to have handled it like it was no big deal. And it was a very big deal. It was a radical, invasive and extremely complex procedure that required eight hours of surgery all told, and he just sailed through it. Awesome.

Except...

We are concerned about his bowels. The reason he was admitted early, remember, was centred on his inability to keep food down, and he has thrown up three times since coming to recover on the PICU. Right now he is floating in a morphine sea of painlessness and pink unicorns, but Daddy needs him to get his bowels together.


So...

Please pray that he keeps his food down, and that whatever is at issue with his bowels would be revealed to the doctors and dealt with speedily, so the boy can come home. Of course, pray for his healing and our peace.

Thanks. I'll keep you in the loop.

That Big Head Boy

Ok, so he looks a little funny but we are being warned that the worse of the swelling will come in the next two days. But he still looks like himself with a more protruded forehead & hooded eyes. He roused & cried which actually made me happy to see him being his little tyrant self again. They swiftly gave him some more painkiller though & he is resting with Daddy watching over him.

It is hard to see-- the bandages, the blood draining, the swollen eyes he can't quite open, but I am ok. I am his Mommy & if he can take it, I can take it. We are pleased the doctors declared it a 'successful surgery'. The RN in the OR said, "This is turning out to be an easy case for us." Thank you God! For directing everything and watching over our sweet boy.

Thank you all for the prayers and thanks RAG family for the good food.

One Down!!!!!

Just saw the boy rolled past us into the ICU for recovery from the surgery. It was a truly amazing thing to see him after such an awesome procedure had been carried out on his head. He came through the surgery fine, and the doctors were happy with the amount of advancement they were able to get, so in all, it was a big success.

What a warrior!

I now have to go and process this properly, but we wanted to tell you, and to praise God for our boy's successful surgery today. One down! However many to go!

A more cogent response to this day later...

12 OClock, And All's Well!

So...two updates so far, and thanks be to God, all is well. The surgery started at about 9:45, after they got lines and tubes hooked up to the Warrior, and around midday they were getting to the "interesting" bits. If you've looked up the surgery, you know what I mean.

Suzette and I are in good spirits, encouraged by the updates and confident that God is looking after our boy.

We'll have a more detailed report afterwards, but that's where we are for now. [Maya is reading this as I type it. How great a reader she is!!!!]

We love you guys. Thank you.

The Morning of the Day

D-day. Suzette is still signed in so we will make this post together. I [Quincy] want to say how happy and proud I am to be Khyle's Shield-bearer on this journey. Today is a big one, but we kn0w God is in complete control.

(Suzette Here) Dreamt about the surgery all night long, all different variations and now the dawn has come and it is time for the reality. God will guide hands & hearts today. We are covered in your prayers and we are strong enough to be at our boy's side through all of this. Blessed with a wonderful nurse last night. We are going to the operating theater now.

It has begun...

I signed the consent form a few minutes ago authorizing the Craniofacial team to go ahead and do the big surgery on Khyle tomorrow at 6AM. For the record, as you pray today, the procedure is called a BIFRONTAL CRANIAL ADVANCEMENT. Everything else in Suzette's post yesterday is spot on.

Some specific issues:
They are bumping up the Vitamin D and the salt in his regimen because both his Vitamin D and his sodium levels are a tad low. Pray for perfect balance.

We are considering what to do with him after the surgery. Does he go to a sort of halfway house where they can monitor him if he needs it, or [and obviously our preference] can we bring him home safely as soon as next Monday? Obviously, we want him home, but pray for wisdom and guidance to do what is best for all of us. He'll probably want to be home as well.

We have spoken to the Case Manager from the hospital who is liaising with our insurance about getting the equipment Khyle will need at home. Pray that this works out.

Suzette and I are tired, bone tired. Pray that we get supernatural rest and find joy in Christ, each other, our children and our families.

More as the day progresses, no doubt.

Day of Prayer

We have set tomorrow Tuesday, June 8th, as a special day to PRAY for Khyle regarding his cranial surgery on Wednesday. Please remember to pray during surgery time on Wed. as well. Feel free to share our request (& this blog) with all your prayer partners & to place Khyle on any church prayer lists. Many of you who live here in Maryland, from church & school especially, have already told us you have been praying and now the hour is almost at hand. We sent out a 'Prayer Event' reminder on Facebook & Khyle has 114 persons committed to praying. Yippee!!

Here are the details:

START TIME: 6AM
DURATION: 6-7 hours
PLACE: Children's National Medical Center, Washington DC
SURGEONS: Dr. Robert Keating & Dr. Michael Boyajian
PROCEDURE: BiCoronal Orbital Advancement aka Cranial Vault Advancement

Special concerns--
--Anesthesia, come thru sedation fine
--Blood transfusion, clean, safe
--No complications
--No drug errors, dosage etc
--No brain or bone infection
--Complete & swift healing
--No necessity to repeat (50-50 'chance' say docs that a 2nd vault is sometimes needed)
--Provision to pay the hospital bill in FULL


I know that there will be swelling & bruising. Most likely his eyes will be swollen shut the first day. Dr. Keating reports that he might look like an 'alien' at first. Dr. Boyajian warned that the procedure is for the long term and the look is something for him to grow into. They are giving enough space in cranium for brain growth for many years & so it may look a tad exaggerated at first.

Some research done on older children reveals that they feel little pain after this particular surgery. (Please God, let it be.) He is expected to go home in less than a week & be back to his 'normal' self in about 3-4 weeks. The incision will be completely healed in a month & we will see Keating every 3 months for a year for post-op evaluation.

James 5:16 "The effectual, fervent prayer of a righteous man availeth much."!!

Fat Feet!

Hey, its been a while. A good while. Since I looked at the boy and realized that he had fat feet. But, after weighing in at 8.62 kilos an hour ago, Khyle The Warrior now has FAT FEET!!!!!! Yaaaayyyyyyy!!!!!!

He's occasionally fussy, but talkative and napping in spurts right now.

So. There it is.

A Room with a View

We have a huge window in our room. It is almost like a skylight - 6 feet high and 3 feet wide. It offers a great view of the brilliant sky & the cathedral with that lovely cross --so inspiring.

Yet my friends, it is this view that gives me great joy every morning-- a fully stocked coffee machine right outside my door. French vanilla, Hazelnut, French Roast--ooh la, la. What joy! ;)



Anyone who knows me, knows that this is no exaggeration. I have been a coffee fiend, java head, caffeine junkie for as long as I can remember and all I can say is, this room was very well appointed. Thank you God!

Fussy Boy

Yay the boy is 19lbs!!!! How great is that!! Surgery is still on and he is healthy. However he does not seem happy with me tonight. He slept on Granny Gran, who just arrived from Nassau & he talked to Daddy sweetly but for me, he just fussed and cried and fussed some more. I had to put him back in the bed & then he went to sleep. Gee, way to hurt my feelings little man.

Well we had a blessed time at church this morning. The congregation at Rockville Assembly of God (RAG) prayed for us & we were greatly encouraged. We are spreading the word to pray for Khyle's surgery on Facebook and have set Tuesday June 8th as a prayer day for him, so join us if you can. I keep wishing I could explain to Khyle what is happening and what is about to happen. I pray that God gives him peace & brings him through safely with as little pain as possible.

He is sleeping comfortably now and I hope to join him soon.

Kisses for Khyle

I think Khyle is looking so big now--18 lbs 12 oz. We are very pleased. Some concern about diarrhea-is it just a reaction to new regimen or is it a bug? They are doing a test to be sure. he seemed very comfortable, I was over the moon to see him.

Had a fun zany day playing with Maya & Khyle. She must have kissed him 10 times. She took lots of great photos.

More Poundage...

Duuuuuuuuuuuude!!!!

8.505

The Warrior is continuing to chunk up, y'all.

Cuz why? [Old Bahamian saying, there, that means "That's RIGHT!!!"]

I may be punch drunk and tired, but my son is GAINING WEIGHT.

Mmmmmmm....Baclofen! Yummy!

So things are progressing quite well. His highness is plumped up nicely, and as you know has been deemed healthy and strong enough for the surgery. Last night was an interesting one, though. I discovered that all this while, I have been telling people that Suzette knows our son's medical history including medications and dosages and mixtures and percentages like the back of her hand - which is true - but through some kind of mystical osmosis, I have also retained much of that information. And the one thing having that information close at hand has taught me, as illustrated last night, is that we know our son best, and WE are his best doctors. The surgeons are invaluable, and the researchers are priceless and necessary, but it is the attentive parent who is her child's shield and buckler, his child's champion. So Khyle is back on Baclofen, a medicine that Suzette and I have had issues with in the past. It makes him very lethargic, and in our experience with it, did not ease the tension in his body significantly, which is why it was prescribed. So when they put him on it this time, it was a bit of a challenge for me to accept it. However, this is Khyle's journey, not mine, and I am willing to be led. But I am watching...

Mummy and Maya are spending the day together today, so its a Khyle-Squared lovefest at the hospital. We'll come up for air occasionally, and I'll keep you informed...

Staying at Children's

There had been some talk of maybe downgrading to another facility but since the surgery is so close they have decided to let him stay here on the GI ward (6th floor) until the day of the surgery. After surgery we will be on the Surgical Ward--5th floor.

Khyle was still a little fussy last night but overall he is well. His last weight was 8. 44kg, that is 18 lbs 9 oz and that is quite good. They are keeping an eye on his liver & trying to make sure it is not overtaxed by the new surplus of food. Khyle looks really well--plump & comfortable. They are also giving him a muscle relaxer for his hypertonicity & rigidness. They hope it will loosen him up overall and also help with his bowel difficulties.

I'll go home tonight & spend some much-needed time with Maya. Master Khyle will be overjoyed to have his Daddy on call. Bye for now...

Under my own steam...

Hi folks. Just wanted to say - as myself - that we are grateful for all your prayers and support. Khyle is a world-changer, and his journey is teaching us all something wonderful. Thank you for being a part of it.

Yes to Surgery

Friends it has been determined that they will proceed with the Cranial surgery as planned next week Wednesday June 9th, so start the prayers for that. I just saw the GI team, spoke with Dr. Scheider. He is very happy with Khyle's weight gain, his electrolyte balance and overall health. He'll be getting more fiber. The case manager is checking with our insurance to help us secure a feeding pump which will enable us to keep this regimen at home.

Dr Keating & his team will visit later for a consultation.

I am very pleased with this news.

No Rest for the Weary

So at last the boy hit the wall last night and he fussed ALL NIGHT LONG! He fussed when I held him, he fussed when I put him in bed. He fussed out the tech who came to weigh him and chewed out the respiratory therapist who gave him his breathing treatment. He was NOT happy. I attempted sleep at midnight and held out until 3am before I just gave up and stood at his crib rubbing his head, singing & talking to him.

It seems some sort of memo had been issued --'Party in room 609' because there were 3 nurses in here in full voice at 4 am to change his trach ties. Why trach ties have to be changed at 4am I'll never know?! At 5 am I again attempted sleep. I achieved some sort of semi-conscious state where I was able to dream and still hear every alarm bell, door opening & closing, doctor & nurse whispering orders etc, etc. But I must have slept at least an hour I'd say.

Then the sun rose right on my head--there is a huge window in here that I love, like a skylight and it blazed down on me reminding me that the day was going on no matter how plum-tuckered-out I was. Wouldn't it be nice if we could put the world on hold--"Sorry, N-E-E-D S-L-E-E-P, let's resume things in 8 hours". Haha, as you can see, sanity is the first thing to go in the sleep deprived ;)

Ok back to the business at hand--how is master Khyle doing? His weight last night was 8.39kg, that is 18 lbs 5 oz. Yes its down a little since Monday but that is quite normal. We have to consider that some of this rapid weight gain is water weight but they say he should balance out in a week. His feeds have increased and so has his liquid intake. He had several well-soaked diapers yesterday & through the night so we are pleased with that. Still hoping to see Dr. Keating, the neurosurgeon responsible for the Cranial surgery to find out whether we are still on for that (next week Wed, June 9th). Will keep eyelids propped open, hope....to....make...it...

Thanks for the prayers, thanks for the love.

That Boy is Looking Good!

He was happy to see Mommy

for sure but after about an

hour and a half he wanted

to go back to Daddy. Oh

well, I know he loves me. Isn't he

precious?!!

More Photos--

http://www.facebook.com/album.php?aid=12936&id=100000612884508&l=479c1d8442

Hanging with Khyle

8.42 and Rising...

This is Quincy, posting while Suzette is signed in...

Khyle The Warrior and I spent the day snuggling in his hospital room. It was a day of quiet communion, and we both missed Suzette but - as men do - silently agreed not to mention it to each other. One of his nurses, Bea, bathed him, and couldn't resist once she saw his hair. Now, instead of his customary afro, Khyle is sporting a head full of cornrows, and rather than a Warrior, today one might be forgiven for mistaking him for a little gangster of love. He's only missing the terrycloth running suit, the Addidas and the gold rope chain to complete the look.

On the medical front, he continued to do well today, dramatically increasing his pee output and putting on even more weight. He weighed 8.42 kilograms at about 4PM, so that meant he'd put on weight even from late yesterday. At this rate, who knows where his poundage will end up? As Suzette noted, the diagnosis under which he was admitted was "Failure To Thrive:" it appears to me that he is indeed now thriving, and that quite well. The difference in his physique is visible to the naked eye, which makes my four eyes very happy, to say the least. The doctors have increased his feeds, and also have put him on a regimen that gives him a break in the feeding. This will help him learn to tolerate more food and to retain the calories thus ingested.

During his first break from feeding, I took him off the monitors and we went on a little galivant around Children's National Medical Centre. Then we watched Sam Stosur put it on Justine Henin (even though I was pulling for Justine) and we watched Rafa Nadal destroy the young Italian fellow. The French Open was fun, and we are both looking forward to watching Stosur try to beat Serena Williams: what a war that will be! Needless to say, he enjoyed the walk, and hanging out with some other children in the lobby of the hospital. They thought he was a girl because he's gorgeous, and he inspected them while they did jumping jacks and ran up and down. Then it was back to the room for more snuggling and snoozing.

I'm up again tonight, so we'll have more to say about it tomorrow I'm sure.

Thank you all for your prayers and support My little boy is amazing.

Two Glorious Pounds

As of last night, Khyle's new weight is 8.29 kg or 18.27 lbs!!! So his weight has increased 2 lbs from 16 to 18 in 2 days. It looks like the feeding & IV regimen is working!

This is good news because it suggests that he does not have any underlying medical problems causing weight loss. He just needs more food & liquid. We hope to talk to Nutritionist/GI specialist tomorrow & work out with our insurance buying a proper feeding machine. Yes this will be one more cable plugged into the boy, but we will be able to feed him larger amounts of Pediasure continuously for 24 hours.

Quincy will also give a report later. He stayed as the hospital last night, I will be going to visit the boys soon.

Keep up the prayers...God is good!

More Pee Please

The great thing that is happening here is that they are measuring every ounce that is going in and then every thing that is coming out. It was assessed this morning that Khyle's pee measured just 158ml when they would like to see 180ml. (5ml=1 teaspoon/30ml=1 oz) So that means he is still dehydrated, so they gave him a large amount of saline fluid (300ml) at one time via an IV drip to replenish his body.

So this is how it will go daily. How much food/liquid does his body need, is he processing the nutrients, is he peeing enough, pooping enough? They will also look at his blood work from yesterday see how he is metabolizing every thing.

He is comfortable and sleeping now after his respiratory therapy. It is Sunday but I should see the doctor by midday.

More later...

Khyle Re-Admitted, 'Failure to Thrive'

I am not sure who told Children's Hospital we were ready to be back in their care quite so soon? We were planning to check-in on June 9th for the much prolonged/much anticipated Cranial Vault, so imagine my surprise when my Nutrionist/GI Specialist Ginny took one look at Khyle yesterday at Nutrition Clinic and said,

"Oh he's much too thin, he needs to be admitted!"

This was supposed to be a follow up appointment for nutrition since his emergency gastric surgery in March. I have been here twice to GI since our discharge & 4 times for pre-op appointments with neuro & plastic surgery in preparation for the Cranial Vault scheduled June 9th. Instead here we are May 29th and we find ourselves enjoying the hospitality of the Gastroenterology Ward on the 6th floor of the East Inpatient Towers at Children's National Medical Center (CNMC) in DC. My, my, my.

Khyle's official diagnosis is 'failure to thrive'. In December we celebrated when he finally reached the 20 lb mark but after the surgery and 10 days in hospital in March he fell to 16 lbs which is what he still weighs two months later. This is not good. Either he is not getting enough food, not processing his food properly or he has an underlying medical condition causing him to burn excess calories. The doctors are feeding him via a machine so that he gets the food slowly and can consume more and absorb/process it better. They are doing daily blood tests to check eletrolytes & are weighing & measuring all output :). I just saw the main GI doctor, Dr. Bader, he was very calm and reassuring but said he wouldn't give any estimates or advice about anything for at least another 2 days. Basically Khyle needs to eat well, pee well, poop well & GAIN WEIGHT.

It has been suggested that Khyle remains in hospital on this feeding regimen until the 9th & then go straight into cranial surgery. That would be 13 days plus new surgery plus new recovery time. It sounds exhausting but we want what is best for our dear sweet Khyle and will heed all medical advice. For certain we will have to change our feeding routine at home and get a feeding pump that can administer Pediasure to him at a slow continuous rate. Maybe if we can arrange that, they may let him come home for a few days before the Cranial Vault.

It is 11:30 am Saturday morning. I went to bed about midnight and arose at 6am. I heard the nurses all night long and they responded very quickly to Khyle's needs. I saw 3 doctors last night, six nurses, a respiratory specialist & someone else whose forte I forgot. This morning I saw 3 nurses, a dietician, the 'main' GI doc and a respiratory specialist. What else does the day hold? Our precious boy is sound asleep. I soothed him some early this morning & he has been asleep ever since. I miss Maya 'papaya' & hope to see her later.

Certainly it goes without saying we need your prayers for strength, wisdom, healing, provision and anything else you can think of. We love you, kisses & hugs to everyone-- xxoo.

Hospital stay

Rejoice!!

Yay family & friends Khyle came home last night! It was a difficult ordeal but we pray it is all behind us. We are so happy to be home, Khyle slept so well last night. We will continue to smother him with love & affection. Maya sooo wanted to hold him last night but he was a little out of sorts so maybe today.

Please continue to pray for his recovery. We are over the moon to have our warrior back home where he belongs.

On the Seventh Day

Okay I am beginning Khyle's blog with our current crisis.

We are at day 7 at Children's Hospital over a seemingly simple error with Khyle's feeding tube. He pulled it out, we attempted to put it back in ourselves but were unable, we went to local hospital where a surgeon upon attempting to replace tube instead punctured Khyle's stomach lining.

We were then rushed via ambulance to Children's Hospital in DC and prepped for emergency gastric surgery. That was last week Tuesday night/Wednesday morning.

Our first estimate was 2 days, then 5, now here we are at a full week and no one is saying when we might go home anymore.

The primary problem is that Khyle is not processing his food. His belly gets very distended because his bowels are moving so slowly, so then they reduce feeds for a while & then we start again. He had a few days of vomiting but that has stopped. Today I was informed he also has a respiratory infection. They may put in a PICC line tomorrow, which is a long term IV since his IV's keep failing.

I am very exhausted but little sweet Khyle is really the only one who gets to complain. He is sooo sick of this place. He wants to be held, to be cuddled, to sleep in is own bed. he wants to stop being poked and prodded every few minutes and fussed over by dozens of people daily.

That said the care has been wonderful. Doctors and nurses (mostly nurses) attentive around the clock. We were in PICU for one day and now we are in the Surgical Unit recovering as best we can.

Thank you to all of you for your prayers, all the meals & the help with dear Maya.
We shall overcome & be home soon, soon soon.