Saturday-August 20th

AGAIN, BACK AT CHOP....

Unbelievable! On Friday we took Wyatt back to his Cardiologist, hoping to find that the increase in his lasix would have decreased the fluid build up around his heart (pericardial effusion), but not only hadn't it decreased, it actually doubled in volume!!

We were told that we had to get Wyatt right back to CHOP ASAP, since the rapid rate at which the fluid had increased was a big cause of concern. So, here at 4:30 pm on a summer Friday, peak of rush hour, we were to make our way down to Philly, again.

I tried to make it a "fun" event for Paul, calling it our own private slumber party. Paul was thrilled, actually. "You mean we get to have our very own Mommy & Son Day??". So we lined the coffee table with all sorts of snacks and sweets, and sat huddled on the couch watching videos and eating yummy treats for our dinner.

It took Bruce a little over 3 1/2 hours to drive down to CHOP, but given the time of day etc., he did very good time. And a room was all ready for Wyatt and the admittance went through very smoothly. Wyatt and Bruce have a semi private (2 patient) room on 6W (step-down unit) and there's a pull out couch right next to the crib for Bruce to sleep on.

Best news was that, amazingly, they did NOT put an IV into Wyatt!! Yipppeeeeee!!! I was SO relieved to hear that!!

So aside from the halter monitor, Wyatt is totally needle free, and able to walk around the unit and play in the play room this time. And aside from being poked for this morning, he really hasn't had any "painful" experiences so far. The plan is to try him on a combination of heavy duty diuretics over the weekend, orally (which is great in terms of no pain, but very challenging for Bruce, who has to try and get Wyatt to swallow large amounts of awful, yucky medicines without Wyatt gagging and throwing it all up! Not an easy task by any means!). We'll just have to keep hoping and praying that this will work. And if not, they will most likely have to tap him (tube back into heart to physically drain the fluid). But let's see what these new do.

All in all, Wyatt's spirits are up and he seems quite happy thus far.

I plan to get all the chores done here at home today, plus take Paul to "Chucky Cheeses" which he has been begging me to do for weeks and weeks, and then after Paul's cousin Sasha's birthday party tomorrow, drive down to CHOP with Paul and Nanny.

We'll keep you posted as best we can.

As ever, our deep gratitude for your amazing continued concern, support, prayers and love.

xoxoxoxo Bea

Tuesday-August 16

FLUID'S RETURN....

Oh brother...... just when we thought things were finally stable and that we could get on with our "normal" lives.... Since our last update, Wyatt has been getting more and more energetic, so amazingly happy, and everything had been moving along so fantastically. At our last two visits with his cardiologist, the fulid around his heart had decreased to the point that they lowered the amount of Lasix that we were giving Wyatt. It truly seemed to be a done deal. But at today's echo we learned that the fluid around Wyatt's heart has suddenly increased!! We were so confident that it was all but resolved. Yet this morning, for the first time, Wyatt was complaining that he had chest pain. "Ouwi Mama. Ouwi herrt" he would say, pointing to his chest. The cardiologist said that it is usually about 2 weeks after surgery that this other issue can starts to appear, if it's going to appear, and that is that the body begins fighting the site of incision of the heart's exterior lining, seeing the invasion as a bad thing that needs to be fought off. He's attacking his own body as it were. So we are increasing his lasix (diuretic) again and putting him on Motrin around the clock (to bring down the inflamation) and we are to go back to the cardiologist on Friday.

This news just slammed us like a ton of bricks. We had all thought that this issue had been resolved..... I pray that we can fix this with our local cardiologist... I truly don't think I could stomach taking Wyatt back to Chop again. Aside from his complaints about the chest pain, Wyatt has been as happy as can be, full of energy (too much, almost!) and for the first time since we returned, he has slept through the night two nights in a row!! I am greatful for that, at least. It's so hard to imagine the condition of his heart when you look at him from the outside.

Any how, we need to ask you all again to please pray or visualize or think positive thoughts... what ever it is that you do, that the increased lasix and motrin will decrease the fluid levels by Friday. Please oh please oh please!!!!

xoxoxo Love, Bea

Tuesday-August 9

SO FAR SO GOOD ....

Bruce and Nanny Joyce took Wyatt to his cardiologist yesterday to do an echo (echocardiogram, like a very detailed sonogram of his heart) and were very pleased to see that the fluid around his heart did not increase since our discharge from CHOP. It hasn't decreased either, but at least it's staying stable. The fluid does need to eventually come off from the outer lining of his heart, but as long as we can keep it from increasing, we can continue to try and treat it with oral diuretics from home. The cardiologist wants to see him again on Thursday to do another echo and an EKG and most likely some tests (to see how his body, especially his liver, is tollerating the large amounts of diuretics).

Sunday night, Wyatt awoke at around midnight and refused to go back to sleep. Bruce went in with him and ended up awake most of the night. Wyatt would start screaming and crying every time Bruce tried to get him to sleep. Eventually, Bruce gave in and brought Wyatt downstairs and they sat and watched Sesame Street's "Alphabet Jungle" video over and over for about 2 1/2 hours.

Yesterday morning, Wyatt was in a terrible mood, angry, y, crying and unconsoleable. But by the time they drove to the cardiologist, he seemed to have snapped out of that mood.

And last night was pretty much the same as the night before. Wyatt awoke at around midnight, refusing to go back to sleep. So I went in with him this time, and ended up letting him "sleep" with me in Paul's bed (who was in our room, sleeping with Bruce). As long as I held him, he seemed quite happy, but not in the least bit sleepy! We were basically awake all night, save for a short spell from about 4:30 to 5:45 am. And we've all been awake since then. {{{Yawwwnnnn...}}}. It's really tough when Wyatt gets into that space where nothing we do seems to please him. He clearly wants something, but what exactly that is, he isn't able to communicate yet, or else he himself doesn't quite know. Given all he's been through I'm not at all surprised that his emotions are all coming out now that we are home. Same as it did for me that first day we were home (the first time).

So health-wise, things are looking good so far. Now it's just catching up on some much needed rest and working through the host of emotions that had been building for all this time. As long as Wyatt gets another good echo on Thursday, it looks like the good recovery has begun!

A thousand thank you's to the incredible RCNS moms who have been bringing us home cooked meals this week. With everyone busy with their own families and lives, that they take the time out to prepare and deliever an extra meal for another family... that is true community support. We truly are so blessed. Thank you. And thank you to team Ambac, and especially Bruce's boss, Bob, who has been so very understanding and supportive in giving Bruce the time off from work needed to be with his family during all 3 of Wyatt's heart surgeries. Another one of the great blessings in our lives! Amen!

Sunday-August 7

DARE WE SAY..... home again??

Apologies for no updates the past few days for those of you who've been following this chapter in Wyatt's journey. But as of now, we are home, again. With all our thanks to the blessings of grace, Wyatt's body responded well to the IV therapy, and by Friday afternoon, he was graduated to Oral Lasix (the same diuretic given orally instead of via IV). Boy, was he (and we) ever thrilled to have that IV taken out. Poor, guy. It had gotten kinked and had to be replaced as it was, so this meant that he had been jabbed and stuck with an IV 5 different times in one week!!

Once that IV was out of him, he was basically free of all wires save for the 5 halter monitors stuck on with stickers, and that was a breeze in comparison! He began zooming about the 6-West unit on a plastic car, and playing in the play room, or riding in the wagon. You would think he was at an amusement park the way he carried on! He was as happy as could be, save for the vital sign checks that would be done every so often. But even for those, he made a game of it for the most part. What an amazing little guy he is! Never ceases to amaze me and put me in awe!

We made a point NOT to have any "Welcome Home" party this time, for fear of jinxing our good fortune, and we await the cariologist visit tomorrow, keeping all our fingers crossed that the fluid is continuing to decrease or at worst, stay the same. As long as we can keep this going, we will not have to return to CHOP.

Wyatt is doing great, and Bruce and I are heavy with the deepest kind of exhaustion, but extremely happy, if cautiously so. All is good today. We are blessed. We are home with both our precious boys and our G-d send Joyce, Bruce's mom, without whom we never could have gotten through all that we have. Joyce Mattaway, you are our Rock. You truly are the best mother, mother-in-law, grandmother and friend that anyone could ever hope for! Thank you for all that you have done for us and the boys. I know that your grandchildren are your life, but you give so much, so much more than we would ever dare ask. I thank the heavens for you in our life. We love you with all that we are! Sugar isn't the only one who dances for joy when you arrive or panics when you leave the house!

As ever, with our deepest gratitude and love, Bea, Bruce and Da Boyz xoxoxoxo

Thursday-August 4

THE IV LEAGUE

Last night Wyatt had been given a high dose of Lasix (diuretic) via IV in hopes to decrease the amount of fluid that had built up around his heart. This morning, after drawing and doing an echo cardiogram, we learned that the fluid did not decrease at all since yesterday. But at least it didn't increase either. So the plan of action at this point is to keep Wyatt here for the next two days with 3 IV treatments each day, and then on Saturday, they will do lab work and another echo to see where the fluid is at that point. If the IV Lasix works and he is able to rid his body of the fluid on his own, that will be great. If not, they will consider more aggressive measures. The problem with diuretics is that Wyatt's potassium is dangerously low from having had all that diuretic put in him already, so they can't go up too much on the amount they try and give him.

Good part is that Wyatt won't get stuck for or have to undergo an echo again till Saturday. Aside from the 3 daily IV treatments and the routine vital sign checks (temp, which he s, preassure, we he tolerates, and a reading of his oxygen sats on the pulse sox, if he's been unhooked) Wyatt will get a much deserved break from other unpleasant "tortures" for the next 2 days. Hooorraaaayyy!!!

His mood has remained much better this time, though he goes through moments of total anger and frustration at being here again. But when no one is poking at him, he actually smiles and laughs and we make jokes and everything! Bruce and I take turns wheeling him around the ward in a plastic wagon, and he even walks around a bit, dragging his monitors behind him. The time back home, even if only a day and a half, sure turned out to be a blessing as far as Wyatt's atitude is concerned. It was a healing balm that he dearly needed, as he was drying up inside by the end of his first week here.

So all things do happen for a reason, and as annoying as it's been, if we were meant to still be here, I am at least grateful for the day and a half respite we were able to sneak in. It revived most of our spirits and was great for Paul as well.

So that's about it for now. We'll be here till Saturday for sure, and after that is anyone's guess. I'm not going to even hope or guess for fear of jinxing things. One day at a time. One moment at a time.

All things considered, I still feel extremely blessed. So many people have it so much worse.

With love and gratitude, xoxoxoxox Bea

Wednesday-August 3, 2005

BACK AT CHOP.....

Today at Wyatt's follow up visit at his own cardiologist, it was discovered that he not only had fluid around his lungs, but now there was a buildup of fluid around his heart as well. This condition, if not treated right away, could turn into something extremely dangerous and so here we are, back at Children's Hospital of Pennsylvania, less than 2 days after coming home.

It all happened so suddenly that we weren't able to see Paul before we left. He is at home now and Nanny drove right back up from Queens to be with him.

Wyatt was so cheerful and happy in the car on the way down here, and he even remained happy, telling "knock knock" jokes (a 2 year olds version, that is!) while we waited in the Emergency room. But once they started poking him with needles to draw and stick an IV back in him, his mood went downhill rapidly. This all is so unbelievable for us... to be back here again so quickly. Almost as though we never left. Like some kind of a very bad dream from which we can't wake up.

We won't know till tomorrow what course of action they will take with Wyatt. I will update as I can.

Please say some extra strong prayers for Wyatt. He's been through so much already. It kills me that he has to endure yet more and more.....

Tuesday-August 2, 2005

FIRST DAY HOME

Last night, upon our return from hospital, Nanny had gotten welcome home balloons, cake and all sorts of yummy treats for a small little welcome home party for Wyatt. He truly WAS thrilled to be home. We saw him smile and talk for the first time since surgery. He even tried walking a few times, but was uncertain on his feet, and still clearly not having the energy. After all, besides the surgery and all the invasive procedures he’s had to endure, the little guy has eaten only about ¼ cup of solid food total in 6 days!! He sat in his high chair at the kitchen table as we ate dinner all together, and he happily held up his sippy cup to each of us as we toasted his happy return.

Paul was soooo happy to have us all home and he had covered the driveway leading up to the front door with hearts and smiles that he had drawn with chalk, and had pictures he drew for Wyatt taped up to the front door and on walls all around the house. Wyatt, though, was very timid with Paul’s attempts to hug him, and would say “no” and push Paul away. Wyatt is still extremely sore and uncomfortable and feeling weak, tired, a little dazed and very grumpy. We’ve been explaining it as best we can to Paul, but Paul is a little unhappy himself, not having his enthusiasm reciprocated. On some level, though, I think he does understand. He’s just feeling a little down, as we all are in this mixed bag of post-surgery emotions.

It’s actually quite surprising to me, to experience the level of sadness and overwhelming depths of emotion I’ve been feeling since our discharge yesterday. It’s like all of the emotions that had been building up for the past 2 months (since the surgery was announced) have all come to a head and now that the “crisis” is behind us, it all comes flooding through. The grief, the fear, the anxiety and even the relief and the rejoicing… all bundled together with a huge dose of exhaustion to boot. According to many of the families in our heart support group, this reaction is totally normal after coming home from surgery. Though we are truly happy, relieved and grateful, in that relief, we now can afford to feel the grief that any of this had to happen in the first place, and the awful feelings of having to watch your sweet baby endure so much pain and hardship.

We met many other families both at the hospital and at Ronald McDonald House who have children with the very same condition as Wyatt who haven’t been as lucky. One boy who had the same surgery as Wyatt is still in the hospital after being there for over 6 weeks, with no end in sight. The families who had surgery the same day as Wyatt are still there with various complications, and some of them haven’t even left the intensive care unit yet. And tragically, at least 2 babies died while we were there, one of them in the same room we were in. It just breaks your heart. We also met a 13 year old boy with Wyatt’s condition, who was in for a repair to his pace-maker (quite common for kids with hlhs to eventually need one, or else they need a full heart transplant as they get older, but we won’t even think about that for now! One step at a time or we’ll never make it through this life!!). What should have been a fairly straight forward procedure ended up with more and more complications, and he is still there, waiting for things to turn around enough that he can get back home.

We pray for all the families still struggling through, hoping and praying to be told that they can finally go home. Mentally, I KNOW how incredibly blessed we are, and how fortunate we have been so far. Yet all my emotions are still there, and I just need to allow my grief to move through, so that I can truly revel in the joy that I know is waiting once I release the other emotions that need their time as well.

There are still some interesting stories that happened while at CHOP (such as Wyatt's midnight "date" in the recovery ward) that I intend to write here when I have more energy. I also want to post a few photos of our champion Wyatt too. So check back over the next few days if you aren't totally bored with us and our story already! But for today, the main thing is that we are home. Wyatt is very weak, and he complains of pain and of major itchiness of his scars (which is a sign of them healing, but rotten for YY), and he’s extremely clingy and very demanding; wanting things HIS way and NOW, but all of that is totally to be expected. He slept for 5 hours this morning after being up for about 2 hours. He looks ready for bed now and we haven’t had dinner yet. Speaking of which, the amazing, loving, supportive moms of Paul’s coop preschool, RCNS, have offered to bring us meals for the next few days to allow us to focus our energy on Wyatt and his recovery. They truly are an amazing bunch of people and we are so blessed to be part of that wonderful community.

We take Wyatt to his local (in Hackensac NJ) cardiologist tomorrow, to get chest x-rays, work and possibly to remove the stitches from his arterial line (in his wrist). We will be praying for a clean bill of health from the exam.

As ever, we truly do thank you all from the depths of our heart for your care, your concern, your love and support. We appreciate all of your kind gestures more than you may ever know. Thanks to all, seen and unseen, who protected our precious Wyatt as he went through this past week. Thanks be to that!

xoxoxoxoxox, the grateful Mattaway family

Monday-August 1, 2005 (7:00 pm)

MIRACLE!!

Ok folks, are you ready? We're HOME!!! YES, the amazing Wyatt was discharged this afternoon and we are now back home in Bardonia!! Can you belive it? This can only be due to the amazing soul that our Wyatt is, and the miraculous, healing, supporting and mystical power that your prayers and energy has created around Wyatt this past week! Truly, we can't thank you all enough.

There is a lot to tell, of the past day or so... each day at the hospital is like a lifetime. It really feels like we were away for a year. We sure are happy to be home. I don't know if I would have made it through another day, watching the spirit of my little YY sink further and further from view. He was soooo dispondent, and we were sooo emotionally and physically drained.... it's hard to even describe what it was like. But the important thing is that we are all home, safe and sound.

Seven days we were gone. Wyatt is back at home less than a week after open heart surgery. It truly boggles the mind.

First order of business is SLEEP!! We all feel like we could sleep for a week solid. Except for Paul, of course, who will be up nice and early in the morning, I'm sure. Any how, I will write an update tomorrow to fill you in on all the events that took place since the last update.

With our deepest thanks for the immesurable blessings that have showered us. All our love, Bea, Bruce, Paul and the Amazing Wyatt Mattaway!!!

Sunday-31st (10:10 pm)

Step-Down Unit!!

Sorry I didn't get a chance to update until now. It seems like yesterday was a life-time ago already!

First off, Nanny & Papa arrived yesterday afternoon with our darling Paulie. Wyatt almost smiled when he saw Paul! Paul was being so good with Wyatt, trying to comfort him in any way he could think of. But Wyatt was so miserable that even his big brother Paul couldn't really cheer him up. I know it did some good, though, to see them all. Then Nanny stayed with Wyatt for the afternoon into evening shift while Bruce and I went back to Ronald McDonald House with Paul and Papa George. It was great to see Paul and he was sooooo happy to be with us. Earlier that morning, I had been with Wyatt while Bruce went back to RMH to try and get a little sleep, and during that time, I got a mat and some blankets and sat on the floor with Wyatt. He just wanted out of his hospital bed so badly, but wasn't strong enough to stand up let alone walk. So he was happy, sitting with me on the floor. The head nurse finally said "Ok, ok! We'll get you a room so you don't have to camp out on the floor anymore!" In the late afternoon, we got word that Wyatt was going to be transferred to the step-down unit!! We got a double room in the stepdown unit, and were right down the hall from a buddy of mine who I met on our internet support group; LittleHearts. Paul, Bruce, George and I had dinner together, and then all went back to the hospital around 7:30 pm, said good night to Wyatt, and Bruce traded places with Nanny, keeping vigil with Wyatt over night.

Today, Wyatt has been doing a little better. He is looking amazingly good, with great color and slightly more alive eyes. Nanny spent most of the day with him, pulling him around and around the unit in a little wagon, where he was propped up with pillows. They even sat on the floor of the family play room for a little while, looking at some of the toys. Then, this afternoon, while I was there with them, Wyatt actually ate a bit of solid food!! He ate almost one and a half meatballs!! We were thrilled! And he had a BM and a number of wet diapers, so things have been moving along! The fluid in his lungs is almost all gone (knock wood), and his oxygen levels are looking great. He is a little low on his Pottasium (most likely from the duretics they are giving him for the effusion), but otherwise all things are looking fantastic. And get this: one of the doctors said that there is a good chance Wyatt will be discharged.... are you ready?...... tomorrow afternoon!!!! Now I don't want to jinx anything, and nothing is for certain, but that this is even a possibility?? One week?? That is a record! Let's just keep those amazing prayers going really strong tonight and tomorrow, and who knows? But this certainly is amazingly good news, don't cha' think?? Woooo hoooooo!!!

And thank you so much to PFE and Ambac for the lovely basket of goodies you sent us!! It's been fuleing us through these longs days and nights! Thank you all so very much!

Well, I got to get back to Wyatt's bedside. Bruce is finally letting me take a night shift, so he can spend a little time with Paulie and get some sleep!

Good night to all, and let's see what the universe has in store for us tomorrow!!

With our love and deep gratitude, Bea (for the Mattaway gang) xoxoxoxox

Saturday-30th (9:40 am)

NO CHANGE.....

Wyatt had a fairly ok night.. was able to sleep on and off, though he was clearly uncomfortable. There still is a little effusion (the liquid around his lungs) and he isn't drinking, let alone eating, much at all. This is the big challenge; to get him drinking, then eating, and eliminating and moving. Wyatt is sooo unhappy, I can't even get the tiniest smile out of him no matter what I try. So unlike our ever happy and cheerful YY. You can just see in his eyes that he is fed up with all the poking and prodding and now cries or screams at the slightest touch from any doctor or nurse. Poor little guy... this part is just gut wrenching.

My beloved in-laws, Wyatt's Nanny & Papa, are driving down today with Paul. We'll see if it seems ok for Paul to see Wyatt or not. Depends on how Wyatt is doing when they arrive. But at least Bruce & I will be able to see our darling Paulie and spend some time with him. Nanny will take over the holding of Wyatt. He loves his Nanny so dearly, I'm hoping it will cheer him up to see her. At least he doesn't associate his Nanny with any of this yucky experience yet. He sure isn't happy with Bruce or I, I tell you. All completely understandable. What an ordeal to have to go through at such a tender age. And to think that this is his THIRD open-heart surgery! It really boggles the mind. Any how, please continue to pray for his recovery. We'll keep you updated as best we can. (It's actually a good way to pass the time when we get kicked out of the room for the doctors "rounds"!).

With our love and appreciation, Bea, writing for us Mattaways.... xoxoxoxo

Friday-29th (5:00 pm)

SPOKE TOO SOON.....

Nothing terrible; just that they won't be sending Wyatt over to step-down unit tonight. He'll stay in the Cardiac Intensive Care Unit for the night. I tell you, Wyatt's had it with this place. He is trying so hard to stay up-beat, bless his heart, but it's hard. He feels like crap and he's super uncomfortable. I try to give him massages, which seem to help a bit, but he also needs to have a BM which he hasn't since Tuesday night!! They gave him a supository 30 minutes ago, so we'll see. It kills me not to be able to comfort him much, though I will say that his oxygen saturation levels, which had been in the low to mid 70's range (very low; NOT good) went up into the low 80's when I held him. That felt good. The saddest part is watching him grow dispondent. That's not good. He really isn't drinking much and has so little interest in even trying. I've ordered up some chocolate pudding and we'll see how that goes. Wish us luck. Gotta get this guy eating and moving. That's the next step!

As ever, with love and gratitude, Bea xoxoxo

Friday-29th (1:30 pm)

CHEST TUBE IS OUT!!!

My gosh things are moving fast around here!! Wyatt's drainage had slowed down enough over the morning that by 11:30 they decided to remove his huge chest tube!! Hooooorrraaaaaayyyy!!

Of course, the procedure was agony for my darling YY; he had to stand up while they drained what was left, and then the removal required quite a process, as the tube was held in place with sutures. I actually had to run to the bathroom and throw up, listening to Wyatt's screams. But, being the amazing being that he is, once the tube was out, he calmed down and settled back quite quickly. Right in the middle of the procedure, Wyatt suddenly yelled out "Baba!!", and I was standing out of Wyatt's sight but I was able to motion to the nurse that he wanted his bottle, so they stopped mid-way, handed him his baba, and he sucked down the entire bottle of milk, which was great, as he needs to move on from clear liquids. Then, when he finished, he handed the doctor his bottle and gave a look like "Ok, you can continue now."

So it's out!! We are all so thrilled!! And.... get this: they plan to move Wyatt out of the CICU and into the "step-down" unit this very afternoon!! This is so unbelievable! Once in the step down unit, patients are often discharged the next day or so! The prayers and energy from all of you are creating a true miracle here for Wyatt! Now I don't want to be jinxing anything, and anything can happen at any time, but so far everything has been going as smoothly as could possibly be hoped for!! Again, we can't thank you all enough. I hope you truly get that your prayers DO work!! Oh, and FINALLY, dear Bruce managed to catch a few hours of sleep this morning back at RMH. I tell you, that man is the most devoted, dedicated, unswerving father and husband. I can't even describe the amount of stress and worry that has been consuming him the past month leading up to this surgery. Once we have Wyatt safely home, my prayer will be that Bruce gets some dearly needed sleep and relaxation. He truly hasn't slept more than 4 hours a night for 5 weeks solid!! Any how, all is moving along amazingly and we will update again when there is more news!!

With our deepest gratitude and our love, Bruce and Bea and Da Boyz!! xoxoxoxo

Friday, July 29, 2005 (9:15 am)

PROGRESS

Things have been very good so far! Wyatt spent most of yesterday sleeping, and would wake up every so often with a cry, but would usually drift back to sleep fairly quickly. (You think all the morphine being pumped into him could have anything to do with that?). The good thing was that he didn't seem to be feeling too much pain. Clearly he was very uncomfortable with all the tubes and wires, and was scared and confused as to what the heck was going on, but over all, he hung in there really well, trying to take things in stride like the trooper that he is.

At one point, when a nurse came to take some , Wyatt, of course, cried out in pain, but then started plaintively pleaing "All done? All done, ok?". The nurse had to still draw more , so Wyatt whimpered a few quiet "oww.... owwui hurt!" but as soon as she was done, and told him "All done!" Wyatt looked up into her eyes and said "Tank you." The nurse was floored. "I've NEVER had a patient thank me after taking his before!!". Well, she hadn't met our precious Wyatt before!

Recovery-wise, Wyatt's been doing great. X-rays showed that he has a tiny bit of effusion (fluid around his lungs), but nothing to be alarmed about at this point. The docs are hoping he will be able to eliminate this extra fluid on his own, through his pee. He's been drinking juice, water and a tiny bit of broth, and thus far has managed to keep all that down, which is great. By late afternoon yesterday, they were able to remove his arterial lines and all the pace maker wires that were attached to his heart, so he only has the chest tube (which is draining out fluid and from around his heart) and an IV in his wrist and one in his foot. That and the pulse-sox, a heart pressure wrap (that they leave on for convinience as it upsets him if they keep taking it off and putting it back on), and a few monitor wires that are just taped on his chest.

Bruce and I were actually able to hold him starting late afternoon yesterday. How good it felt to wrap my arms around him, even though we had to be very careful in how we picked him up (never from under the arms, for about a month till the chest bones fully heal) and had to manuver around the tubes and such. But it was amazing to hold him in my arms and hug him close to my heart!!

Unfortunately, we weren't able to get a sleep room (tiny rooms with a bed in it, so we can get a little nap over the night... there is only a rocking chair next to Wyatt's bed, and we are not allowed to "sleep" in the CICU.) Bruce, being Bruce, insisted that I go back to Ronald McDonald House to get some sleep, and he spent the night sitting up by Wyatt's bed and then making a make-shift bed of some hospital towels which he placed on the lactation room floor, where he was able to get a couple hours of rest, if you can call sleeping on the floor rest!

Today, Bruce is back at RMH hopefully getting at least a few hours nap and a shower, and I'm with our sweet Wyatt. But I just was asked to vacate the room as the medical team was doing their "rounds". This is a daily occurence (usually 2 or 3 times a day) when all the doctors go from room to room and discuss each patient as a team. The parents are asked to leave since the other patients are also discussed and they want to keep each patients privacey. So I have 30 minutes to up-date this site.

Wyatt was quite upset this morning, seeming to be fed up with this whole situation. He wouldn't talk to Bruce or I and when we would ask him if he wanted this or that, all he would say was "No. No! NO!!". He is uncomfortable and tired. Plus they are beginning to wean him off the morphine, so real pain is creeping in. We are giving him Tylanol, but doesn't quite pack the punch that the morphine did! The doctors are hoping to get him moving around this afternoon and actually want to get him to walk a little, so they can monitor how his Fontan responds to activity. There is talk that the chest tube may even be able to come out later today, if the draining really slows down!! So basically all is good news thus far. Wyatt is not thrilled with the situation, but who can blame him? And given what he's having to deal with, he really is being soooo amazing! What a remarkable little guy our precious "YY" is!!

Meanwhile back home, Paul hasn't been himself, according to Nanny. He wet his bed the first two nights we were gone, and really shows no interest in eating. But he's had a few play-dates and went to a birthday party and is doing pretty well considering. He has a bit of a cough, though, so we'll have to really keep an eye on it to determine if he should visit Wyatt or not. Paul asked his Nanny the other day "Why can't I give part of MY heart to Wyatt?", and today, he's been busy all morning making "Welcome Home" signs for Wyatt and when I talked to him on the phone, he was in the middle of building a "volcano that shoots out hearts for Wyatt". I love him so it hurts!

Ok, so that's pretty much the news for now. I'll try and update if there is anything new to report later today. Otherwise, hopefully no news will mean that everything is pretty much the same as it was this morning.

As ever, thank you all so much for your continued concern, prayers and support. The notes in our guest book are very sweet and comforting! Please keep those prayers going! We love you all so very much!

And thank you, Deb Rennie in Australia, for putting up Wyatt's recent photos on this website! You are the best!

With our love and gratitude, Bea (for Bruce, Paul & Wyatt) xoxoxoxoxo

Wednesday, July 27, 2005

OUT OF SURGERY!!

Wow... I'm shaking as I write this... our precious Wyatt is out of surgery and now in the Intensive Care Unit, pretty much asleep. Surgery went smoothly according to the surgeon, Dr. Spray. They have already removed his breathing tube, so he is breathing on his own, except for a little help with a cannula, mostly to be sure he doesn't stop breathing on his own.

Wyatt apparantly woke up during the ride up from OR, and he was, as can be expected, very angry and confused. He asked for his mommy a number of times in-between furious screams, but they needed him to be wide awake in order to remove the breathing tube. I guess it was better that they made us wait till he was back asleep before we could see him. It was hard enough with him asleep. Even though we've been through this twice already, it still is so shocking to see your baby out cold on a hospital bed, tubes and wires running from his chest, arms and legs. I was also suprised at my own reaction upon seeing a tiny little scratch on his cheek. Here Wyatt was, his chest having just been cut open, all these wires and such attached to him, yet what I kept looking at over and over was this tiny scratch on his cheek. It really was bothering me. When I asked, the nurse speculated that it most likely was a scratch from the heavy covers they place over him during surgery. Odd how the mind works. (Mine any way...)

Wyatt was such an amazing trooper both yesterday, during his pre-op tests, bravely holding out his tiny arm for the nurse to draw , and today, as they did all the routine tests and readied him for surgery. Once he was given his narcotic, what a crazy little drunk man he became; flurting wildly with any nurse he could see, offering kisses and saying "Helllloooooo!" very loudly to all who passed by. He would burst out in crazy giggles, clearly finding everything quite funny from his drunken little state. He waved goodbye as the anesthologist(?) carried him off to the OR in her arms. He had first given her a big kiss on her lips, before wrapping his arms around her, ready to be picked up! What a crazy, beautiful, amazing little guy that Wyatt is!!

So THE SURGERY PORTION WAS A SUCCESS!! Praise be to all that is Holy!! And thank you, thank you and thank you soooo much for YOUR prayers, positive images, positive thoughts, healing energy, good wishes, concern and LOVE!! I KNOW that our precious Wyatt was surrounded by a huge blanket of support from so many of you, and I truly cannot thank you enough. It makes a HUGE difference. Again, thank you for being there for us and our darling boy.

So the next stage is the recovery period. This will all depend on weather or not he develops Plural Effusions (retained fluid around the lungs and/or heart). This is a big concern after the Fontan, and so he will have daily x-rays to see how that goes. We ask that you continue to pray for Wyatt, that his recovery goes as smoothly and successfuly as his surgery has. We will continue to up-date this site until he is safely home, back in Rockland County!

With our deepest gratitude and love, Bea & Bruce, Paul and Wyatt!!

Monday, July 25, 2005

SURGERY DATE DELAY!!

This morning, as we sat around the kitchen table for our goodbye breakfast with Nanny & Papa, Paul, Bruce, Wyatt & I, the phone rang. It was from CHOP informing us that due to a huge number of emergency cases they had over the weekend, they are very backed up and Wyatt's surgery has to be moved to Wednesday (the 27th). They wanted to catch us before we got on the road for Philly. Good thing they caught us in time.

You can most likely imagine our internal reactions. But none of us said a word, aside from Bruce who said "We should still head down there today any how. Just later in the afternoon". I agree. We are all packed and set to go. Why let this drag on. But when we called Ronald McDonald house to confirm our arrival this afternoon, we were told that they too are over-booked and there is no room for us currently. We are now on their waiting list. So we may stay home tonight and leave tomorrow morning, with Wyatt's pre-op tests now scheduled for tomorrow at 1:30 pm.

Never a dull moment. We just have to take each day, each moment, as it comes.

By the way, I want to take this opportunity to thank you all so much for your overwhelming show of support and love. I was so deeply touched by the gifts, cards and good wishes from my yoga students at Premiere Fitness, and all the wonderful families at RCNS as well as the loving Yoga Mountain community, our dear neighbors, and especially Kathy Meth and our wonderful summer babysitter Jordana, both of whom really went above and beyond in their kindness and thoughtfulness. We thank you all, both near and far, for your continued concern, care, love and support. And please focus those prayers on Wednesday now, instead of tomorrow!

With our love and gratitude, Bea, Bruce and da Boyz xoxoxoxo

Wednesday, July 20, 2005

AAAAAAAAARRRRRRRRRRRRRRRRGGGGGGGGGGGHHHHHHHHHH!!!

Bruce and I are overwhelmed with anxiety, sadness, fears, doubts, anger and dismay. As surgery date nears, the doubts start setting in; are we doing the right thing? Would it be better to wait till Wyatt is bigger, older? If we can put off the Fontan for another year or more, might they come up with a procedure far superior and safer than the current Fontan?? How on earth can we hand over our perfectly happy, energetic, healthy, beautiful baby boy and let him get broken open and have him go through all that the surgery entails? And then all the post-op time, locked indoors, strapped to a bed, wires sticking out of him, filled with discomfort in a strange and scary place......

So you see, we aren't always so stoic and strong. We have total melt-downs and sometimes get paralyzed with worry. No, it does no good to worry, but we are his parents. Quite frankly, I don't think a stop button was ever designed on a parent's worry mechanism. If it weren't for my yoga, and teaching my yoga classes, I'd to see what state I would be in!!

Again, I can't begin to express how grateful I am that Wyatt, at least, is oblivious to what lies ahead. He is able to live fully in each moment, enjoying life as it greets him in every moment. Wyatt is the inspiration. He truly puts me in awe. So much so that I want to take his gorgeous little body and run as far away from reality as my will can carry us!!!! GET ME OFF OF THIS TRAIN!!!!! PLEASE!!!

Ok, take a deep breath, go outside and prepare for your 6:30 yoga class. That always shifts my mood 100%. I thank the heavens for my yoga!! Namaste!

Monday, July 11, 2005

UPCOMING FONTAN!!!

Oh my goodness, where does time go?? I can hardly believe it's been almost half a year since we last up-dated this website! Well, no news is good news! To catch you up, Wyatt has been doing amazingly well on all fronts. He got through the cold/flu season with a few colds, viruses and an ear infection, but other than that, he was strong and healthy. He has grown in leaps and bounds in terms of his verbal and physical abilities. He talks in sentences now, and runs, jumps and even skips (or tries to!!). He remains the most happy, sweet, loving and funny kid!

Wyatt did start getting a little more blue, a little more often, over the past 5 months, and so, at Dr. Tozzi's request (Wyatt's local cardiologist), we had Wyatt scheduled to go to CHOP for a catheterization. First time we took him down, he developed such a high fever upon our arrival that they had to cancel the cath, and send us back home. After 10 days on antibiotics, we head back to CHOP, and this time, he was able to have the cath performed. They found a vein that was diverting away from the route it was supposed to go, so they were able to perform a procedure during the cath, where they inserted a tiny coil around this vein, to close it off, and send the back through the route it is meant to go through. The procedure was successful.

The question now became; WHEN to do the Fontan. Do we wait until next year, so that Wyatt will have another year to grow, and hopefully will be closer to the ideal surgery weight of 30 lbs? Or do we go ahead and do the Fontan THIS year, NOW, while we know for certain that Wyatt is in great health, with great heart function and strong enough to, hopefully, withstand the rigors of such an intense surgery? There are arguments for both sides. Plenty of them. We drove ourselves around the bend for the next several weeks, researching, talking with doctors, other parents, looking up surveys on the internet.... over and over, back and forth, back and forth. This really was an agonizing decision, since, at this point, the timing of the surgery was considered "elective". The surgery HAS to be done at some point, but it was up to us, as to when.

In the end, we finally decided to go for it this year, this summer. At least right now we KNOW his health is good. If we wait till next year, no one knows what state his health and heart function may be in. Also, we will have no way of knowing what else might be happening in our lives. So many unknowns yet no definitive advantage to waiting. Only possibilities.

So the date is set: Tuesday, July 26th. Two weeks from tomorrow.

Both Bruce and I (and Joyce, my mother-in-law) have been swinging between sheer panic and dread, to resolute confidence and a "let's just move forward and get this over and done with" kind of attitude. My therapist has given me a sedative (some version of Valium) for those days when it seems unbearable. But in truth, I've been strong more often than not. Only a few major meltdowns, thus far. I guess we are getting used to this level of.... ? Anyhow, Wyatt is blissfully unaware of what's to come. How hard it will be to hand over my perfectly healthy, happy and energetic little boy, to be sliced open and have such invasive procedures done to him. Well, there's no other choice so on we go! More than ever, we will need all your prayers and positive thoughts, visualizations and support, especially on the 26th! We will do our best to keep updating this website, so you can follow Wyatt's progress as he faces this major challenge.

We will be based at the Philadelphia Ronald McDonald House, but will most likely be spending all our time at Wyatt's bedside, in the pediatric cardio-intensive care unit at CHOP. Thank you all, in advance, for your prayers and support. We couldn't get through this without your love and concern!!

With love and gratitude, Bruce and Bea, Paul and Wyatt xoxoxoxo