Hospital Stay #2: Complications & Staph Infection 3/26/2008 to 4/24/2008




Updated 03-26-08
It all started on Tuesday, 3/25, at about 7pm. Anthony hadn't pooped since Sunday, and he was acting fussy. We thought it was constipation and decided to use a suppository in the morning if he hadn't pooped yet. He woke at 3am in pain, we fed him, and he went back to sleep. At 7am he woke screaming again. We used the suppository and fed him again. By 10:30am he pooped big, but he was still in screaming pain. We called the pediatrician and got an appointment for 2:30pm that afternoon. Anthony continued to express pain that subsided only periodically into whimpering. The pediatrician examined him and found no constipation and nothing else from his perspective. But he recommended we call UCSF and alert them as well. He called the UCSF cardiologist unit for us and got a doctor on the phone who wanted Anthony to come in to UCSF right away. They even set up a bed for him in the same room he just left two days earlier. So Mommy, Daddy and Baby piled into the car and rushed to UCSF. But we ran headlong into stopped traffic because the Golden Gate Bridge was shutdown in both directions due to a seven car pile up. (It's not fun to be in stopped dead traffic with a child in pain.) UCSF called us along the way and told us to bypass Emergency and go directly to our old room. We got to UCSF and they immediately performed a chest x-ray, EKG and a complete echocardiogram. Anthony has Postpericardiotomy Syndrome (PPS) (http://www.emedicine.com/PED/topic1875.htm). It's a reaction to the surgery where the sack around his heart, the pericardium fills with fluid. The treatment is to give him high doses of ibuprofen to remove the inflammation and to increase the Lasix to dry him out. It's a possible three to four day stay in the hospital. The odds stack up like this: only 0.25% of all children develop heart disease to begin with; of those only 2% develop Postpericardiotomy Syndrome (PPS). So, Anthony is in rare company. Company of which we would rather not have him counted. We can't express enough how heart breaking and emotionally draining it is to still be going through problems on this magnitude. Most PPS patients are 5 to 15 years old and take month to develop symptoms. In Anthony's case it only takes days, which means fatality was only two days away. Mommy and Daddy purposefully did not give Anthony pain meds (Tylenol) in order for his temperature to be properly read by the doctors. That move prevented another 24 hour wait, which would have brought Anthony closer to the worst case scenario. Anthony is in extreme pain that gets worse when he lies down. He is only able to sleep lightly. We will know more when we speak to the doctor again tomorrow. Here's some pics.




Updated 03-27-08
Anthony's PPS condition is not better, but it has not worsened. He gets a daily echocardiogram and today's showed no decrease in the fluid build-up around his heart, but no increase either. This is a good sign to the doctors as the medication seems to be working, but it also means that Anthony's pain level has not decreased from yesterday. He does get Tylenol for pain, but only minimally. The ibuprofen treatments to bring down the fluids also serve as pain reducers. Anthony was fussy and in pain for most of today. At about 2pm he took a big poop and got his meds at the same time, so (needless to say) he's finally resting comfortably now in Mommy's lap. Grandpa A stopped by for a visit and entered Anthony in a raffle that was going on for the baby patients, and Anthony won. He won a $5 gift certificate for the food court downstairs and an adult UCSF baseball cap. Grandma P showed up yesterday for a long visit just as we were trying to get to the hospital. She's at our house right now making life better for Mommy and Daddy. Anthony gets his drain tube stitches out tomorrow (another little milestone). Daddy's work sent Anthony a beautiful "Welcome Back" flower bouquet that arrived at the house yesterday. It was very appreciated, and in this case, will be used twice. We hope to have Anthony back home after this stint by Sunday (we hope). For now....pics.

Updated 03-28-08
First off let me say thank you to everyone for all the nice things that have been given/sent to us for the past two weeks. It's time consuming to care for Anthony and Mommy/Daddy even though there are nurses here. Anthony is a fussy baby and requires lots of attention (just ask Grandpa A). So, we haven't been answering emails as regularly as we have in the past. Please forgive us if we haven't responded to your emails. But please rest assured that we have received them and appreciate all the nice thoughts. We will send out emails soon. These updates usually take all day with interruptions and stuff. (Like right now in this sentence as the nurse is about to remove Anthony's sutchers from last week. .....and now Anthony is screaming and is being consoled by Mommy.). We just want to say thank you for the cards, emails, flowers, balloons, chicken casserole, gift certificates, toys, Mexican lasagna, blankets, candy and the mounds of support and nice thoughts for Anthony. Its long days here as Mommy/Daddy arrive around 9 in the morning and leave after 10 each night. There is plenty to attend to, so things move quickly, but by the end of the day Angela and I are just plain old exhausted. We leave only after Mommy and Daddy are happy with the night-shift. We rush home, eat, shower, and try to crash just to start all over again. But, enough about us. .......Anthony's condition (PPS syndrome) is the same as yesterday. The fluid build up around his heart has not gotten worse, but it has not decreased. We are told that this condition can last anywhere from two weeks to four months, depending on the child. PPS is not caused by the surgery or any virus. Its simply Anthony's heart's reaction to being cut open. The cardiologist team wants to keep Anthony here over the weekend (mostly because of his recent surgery) and probably send him home with us on Monday or Tuesday with a new list of meds to handle his heart surgery and the PPS. By the way...we found out that UCSF is the best in California for child heart conditions and 7th overall in the country. We're happy to have gotten all the right recommendations.....and happy to have sprung for the expensive insurance to cover it. American society has done it's best to supplant natural selection with insurance premiums. You live better only if you can pay more. (sigh)....Sick, ain't it? .....Anyways, today's pics.

Updated 03-29-08
Day four started out with some good news. The fluid around Anthony's heart has decreased about 5% to 10%. Not much of an improvement and not much of an improvement to his pain, but an improvement none the less. Later in the day he got real fussy, which we all concur is because he hasn't had any solid sleep. A hospital is NOT a place to come to rest. I, myself, have stayed over night in three different hospitals in my life and never got a good night's rest. With all the beeping, poking, vitals checking, uncomfortable sticky things connected to wires and being woken up for "special procedures"....its a wonder any one can get the healthy rest they truly need, especially a baby. And at this point in his condition ...he...just...needs ....his ...god-damned ...rest, ...period. The doctors want to keep him here until Monday at the earliest, and then maybe till Tuesday. We have told them that we will not go against recommendation, but if that recommendation is about "rest", then let us take Anthony home where he will sleep...uhm, ....like a baby. Another reason he isn't sleeping is due to the extra gas in his system from his Motrin prescription. At 3pm he napped after an hour long banshee scream in pain. At 4pm he woke and ate a bit more. (Thank god for Tylenol) Anthony is 15 pounds 6 ounces. The exact same weight as when he came in for his surgery, which means he's lost some and gained some back. This current condition will certainly last for a few weeks to over a month. It's easy to see that now. Our only concern is his pain level. We talked to the doctors and found that Anthony is definitely gassy due to his meds, so they have increased his Zantac prescription. But prior to that it took up to 2 hours to calm him down. At 6pm he finally was calm enough to try and sleep. ......and that's how the day goes: it feels like we just showed up and now it's evening time. Daddy brought all the family's tax stuff, but Anthony's pain episodes last long enough to whittle the day away. Anthony will be on Zantac twice a day and Simethicone only as needed to control his gas. Even normal gas for a heart patient can be a stabbing pain. Poor kid. He can't get a break. More pics.




Updated 03-30-08
We didn't have an internet connection all day, because the UCSF Hotspot was down and being repaired. Anthony didn't sleep much during the night, so it's good that by midday today he had a solid nap. The daily echocardiogram showed no change in the fluid levels around his heart, so no change in his pain level. His white blood cell count is elevated, but not enough for antibiotics. Anthony had a chest and bowel x-ray done this morning. The results showed clear and clean lungs and no issues in his bowels. We talked to a surgeon and were told that the best that can be done at this point is to keep monitoring him for trends up or down. We asked if Anthony can come home soon to get more solid rest (something we believe he needs more of in order to show any improvement), and we're told that that will be the case, but only after the doctors are satisfied with a positive trend in Anthony's condition. He is too small to send home as we could still easily experience the very same as what brought us back in the hospital in the first place. At this point in the game the medical procedures and processes are all that stands between us and knowing what is truly wrong with Anthony. We don't like that he is pumped full of meds, but that very 'cocktail' and Anthony's reactions to it are part of the process of understanding his condition, and eventually, his ultimate solution for health. One of those reactions is that he keeps spitting up his Motrin. So, it's fairly safe to say that his PPS is not reducing, because he's not retaining his medication. As the day wore on Anthony developed a fever that shot up to 101 or so. He was immediately moved into a private quarantined room and had three tests performed on him for any kind of virus: a blood draw, a urine sample and a DFA test. The blood draw of course caused him some great pain. But the DFA test can only be classified as ...torture....more specifically Waterboarding. Babies breathe through their noses. The DFA test squirts water up their nostrils and then a long 7 inch tube is inserted to suck out mucous from the sinus cavity. The screams Anthony let out during this procedure can only be described as a small animal stuck in a bear trap. After three hours of poking, torturing, prodding and medications Anthony passed out. .......Angela and I went home had a very very hard time getting to sleep. Today's pics.


Updated 03-31-08
So the great mysteries this morning are: Why did they remove the IV in his head that was put in last night? What's his temperature? ...and... What's the results from this morning's Echo? They removed the IV from his head just 1 hour after we left last night, because it became compromised when they tried to inject a general antibiotic. After it was removed Anthony got an antibiotic shot instead. If any more antibiotics are needed, then he will get them orally. His temperature is back to normal today. He still has a stuffed nose and slight cough. Results from the DFA test are coming later this afternoon for what kind of bug he has. At 1pm the doctor has yet to speak to us about the Echo. During the night the hospital implemented quarantine procedures for Anthony's room: warning signs on the door and a stack of gowns and masks just outside. Mostly as a precaution, so as not to affect the other babies. (The private room is great, and very quiet.) By 2pm today we found out the DFA, urine and first round of blood tests were negative. Anthony does have some sort of virus, but not detectable with current tests (there are millions of different viruses). By 7pm the quarantine was lifted. The fact that he is feeding well, responding well and doesn't have a temp means things are going better....for today. His echo again showed no signs of decrease, but has not increased either. His little body is fighting two different things now, so progress will be slow until we get a rhythm going. Anthony's surgeon stopped by to check on him and admitted information supplied earlier in the day by Anthony's Grand Uncle Dom (a doctor himself): PPS can be brought on by a virus that is introduced to the pericardium. This means that Anthony was introduced to a virus either while in surgery, by hospital staff during/after surgery, or from his visitors while vulnerable from his surgery. (Both Mommy and Daddy had a cold while Anthony was recovering from surgery. Could it have been us? Even the doc's can't say for sure.) We'll know more in the morning. Daddy decided to stay the night in Anthony's room. Anthony fell asleep at 11pm.....after all the other babies are already sound asleep. Pics.

Updated 04-1-08
It's been a very long day today, so please don't mind any shortness in this update. I'm running out of embellishment-energy. Anthony's fluid around his heart contains blood that is beginning to clot, which (we're told) is very unusual. The doctors don't think it a turn for the worse or better, but hope that the clot will be absorbed as the best case scenario. Worst case scenario is Anthony having multiple heart surgeries as he gets older in order to allow for the growth of his heart. At least the fluid didn't show any build up again today. Since Anthony's case is so "....rare and unusual..." the doctors/cardiologists can't pin down what will happen over the course of the next few months. So Anthony will have Echocardiagrams every other day, then every four days, then weekly, bi-weekly monthly, etc.......until someone is satisfied on what the final outcome will be. ......Ssssooo...How's *that* for feeling good about things as a parent? Anthony also has a head cold/virus that is still with him. It's the first time he's had a cold, and it has to happen right in the middle of his heart surgery. Could it have caused the PPS? ...I don't know, and neither do the doctors. ....One of the best hospitals in the country and my kid has got to come up with something that is got the research department salivating. Forgive me if I sound a little whiney, but... that sucks. Anthony has been crying for most of each day with mucous, fever, gas pains (from the meds), not sleeping well, and/or hating the torturous "procedures" he under goes every few hours. His voice has been horse for the past 5 days. What I try to show in the pictures is the Happy-Anthony and some good times, but they are very rare as the day goes. Both Daddy and Mommy are beat. Anthony had three smiles all day today: one for Daddy/Mommy, one for Grandpa A and one for the nurse. Tomorrow he gets another Echo and a blood draw (more screaming). If his white cell count is down and the echo looks stable and/or better, then they may send him home. If not, ....well... your guess is as good as ours. ...Along side of Anthony's battles we'd like to acknowledge Anthony's Grandpa B in NY. Grandpa B has throat cancer and has been undergoing chemo and low grade radiation treatments, which just finished today. Grandpa B's next step is a super high dose of radiation that will require surgery on his neck before it can be administered. If you're saying prayers or just wishing good mojo, then make sure to add in Anthony and his Grandpa B. ...more photos.



Updated 04-2-08
Daddy spent the night with Anthony again. This time was different: Anthony was in pain all night long. Turns out he was constipated. So the nurses gave him Tylenol early this morning. He felt better and pooped later on, as in all over the bed. The daily echo showed that the effusion around his heart has almost fully clotted. The docs keep saying that the clotting will absorb into his system, but they still want to monitor him quite extensively for the next few months (outpatient basis). Four to five months from now is when we all hope this episode will be finally and completely over. Anthony got poked again today for blood (1 of 20 that we've witnessed), and his white cell count was up again and way high. Anthony is a bit chubby and each blood draw requires at least two sticks to get a vein. The Italian in him is a bit of a hindrance right now. He also developed a red spot/rash-thing just to the right of his surgery incision. The resident doctor doesn't think much of it, but she will get Anthony's surgeon to look at it as soon as possible. We would have been given the green light to go home today, but his white cell count is what's keeping him here. There are a lot of reasons why his count is high. Lack of sleep and his current head cold are just two of them. He's breathing easier today, so we may have turned a corner on the head cold. But he will be here at least one more night for observation. Let's hope tomorrow will be better news. Anthony is doing well, but smiling less. He's been in or within 10 feet of a hospital crib for over two weeks now. You can tell that he's depressed and withdrawn. It takes a lot to make him smile...and those are the pictures you see. Mommy will be staying with him tonight as Daddy gets some rest at home. Hospitals are noisy places that follow procedures that have nothing to do with keeping a quiet relaxed atmosphere so patients can get the rest they need. It's been up to us to press the nursing staff to bunch up all the things they have to do to Anthony, so they don't keep waking him every two friggin' hours. Both Mommy and Daddy believe that (recommendations aside) Anthony would do better 'resting' at home. We'll see how tomorrow goes. More pics.


Updated 04-3-08
Part One, late night on 4/2 into the morning of 4/3:
No. It is not cold or callous to be sitting outside the ICU doors typing on my phone. It helps pass the time that has just stood still. Anthony was moved back into the ICU just minutes ago (@9pm). The docs stopped his meds via procedure earlier to try and nail down why his white cell count was getting higher. Within a couple hours his fever shot up. The rash on his skin got bigger, and Anthony was officially diagnosed with an infection of his incision, a really really bad one. His chest must feel on fire. His cries of pain are whimpery. He's screaming now, because they are putting in yet another IV. I just had to leave. .....And now it's about 2am. We've been consoling Anthony and helping with his care. He had a pick-line put in, so they can administer antibiotics. A normal IV is basically a needle. A pick-line is more like a skewer. It's used so they can draw blood and administer drugs from/to deeper inside the body via the artery in his groin. I was there for that procedure. It's pretty amazing. The antibiotics he will need would burn surface veins used by IVs. So, to recap, that's: open heart surgery followed by PPS, in conjunction with a head cold, and an underlying infection. The infection was hidden by all of the other symptoms as well as the medications. We are exhausted emotionally and physically. I've typed all this on my phone and will update the web site for today sometime tomorrow, so you may see two updates at once.
Part Two: Morning to Evening:
Anthony had a temperature of 103 soon after we left the hospital. Yes, the infection is that bad. How could he have gotten it? Who knows: in the operating room?, the staff?, ....us? We're not sure how to answer that question. His muted cries and moans are all that are a concern now. Am I being over dramatic? I may think so, but I don't feel so. Anthony had a CT scan today and the good news is the infection is only in the soft tissue, but it's pretty bad. We caught it time, though. He will be in ICU for the next 7 to 10 days receiving some pretty heavy doses of some powerful antibiotics. His blood cultures show negative still, but his white cell count shut up again today along with the fever. He was able to eat, but only about 1/7 what he normally eats. As of 11pm he still has a fever and has only had three ounces of milk all day. He is currently very pale. We keep getting reassurances from the doctors that Anthony will begin to be ok once the antibiotics build up enough in his system. The CT scan didn't show any infection spreading internally or into his chest plate. His effusion seems to have stabilized. We really don't know what to hang our hats on as the facts keep moving. We'll keep with the reassurances of the doctors and see how things are in the morning. Today's pictures. .........by the way...today is also Anthony's 5 month birthday. Happy Birthday Anthony!!!

Updated 04-4-08
So....here we are, right back where we were when we arrived back on 3/26, same bed, just 15 feet from where he recovered from surgery. His fever is down, but still hot. He is on some pretty powerful antibiotics (Vancomycin, Zosyn (pippericillin)) three to four times a day and Tylenol as needed. Anthony's surgeon, the ICU attendant, his nurse and his blood cultures all now agree....Anthony has Staphylococcus aureus occurring under his incision and it's starting to abscess. This is a big thing. Big for Anthony and not so good for the hospital as they will be reported to the CDC as part of procedure. (One of the best hospitals in the country for heart surgery, yet Anthony got infected. I feel a little betrayed, while somehow oddly thankful.) The surgeon feels it may have occurred after we brought him in and during one of his Echos. The infection is showing up in his blood, which is worrisome as it can possibly infect his organs. He is a very very sick boy. Another blood culture was taken to find out the exact specific strain. Sometime in the morning Anthony will have a minor procedure to drain the abscess, which of course could cause more infection as that wound will need to stay open to drain. (This is a fucking nightmare.) Anthony is in pain each time we move him or if he moves on his own. He has been in a crib now for almost three weeks, and will most likely be here for another two weeks. My medical leave may run out before he can come home. Again, a fucking nightmare. Let me flashback to 3/26, the day we came back in to the hospital. We called the cardiologist on-call that morning and never got a call back. The director of cardiology here has been visiting us for the past couple days to get information from us so he can find out who to scold and what process improvements they may need to implement. (Not to make light of anything, but why is it that every new "product" I buy needs level 3 tech support?) Anthony had one happy moment today (after the Tylenol). He's also not eating much, while pooping a lot due to the antibiotics. Here's some photos.

Updated 04-5-08
(this paragraph last updated at bottom for this day at 11pm PST)
So....we left last night and thought things were ok. Until we got a call from GrandpaA at 10pm who stayed behind to hang out. Anthony's surgeon ordered another periferal blood draw (not from the pick line), which means more poking and sticking. We used our cell phones to the fullest with questions back and forth. They wanted to be sure that the infection was localized. Thank god it only took two pokes to get it right and he was back to sleep. GrandpaA stuck around to sooth him back to sleep. The good news is no more blood draws of that nature. The docs are sure that he got infected while in the hospital at the start of his second "visit". As of this morning his fever is down and his white cell count is down. The surgeon who performed his heart surgery has taken over and is performing the clean out. They gave Anthony fentinol and kedimine....and he was still awake and squirming (like father, like son). So they drained the easy part and realized the infection is pretty big. So.....they took him into the OR to open up his incission and clean out the infection fully. The surgeon's worry is that the infection has/could spread to the newly installed patch in his heart. Effectively ruining a prefectly good heart operation. Its upsetting that such a good hospital could get Anthony infected, but truth is ALL hospitals are incubators for Staph. Somewhere somehow along the line he got infected. ......and now it's 8pm...... Angela and I are home now and you'll have to forgive me if I only give you the short story of the last few hours. Anthony's abscess began to be drained early this morning. The surgeon saw bigger damage and moved him into the OR. They reopened his incision and cleaned out the infection. It also spread to his chest bone. His chest was reopened and the infection scraped. The surgeon also removed the PPS effusion and cleaned out his chest cavity. Yes, the infection was that bad. Anthony is right now listed in critical condition in the ICU. Angela and I were sent home as Anthony will be non-responsive for a while. We are getting updates throughout the night. We didn't take any pictures today. Anthony has twice as many tubes and wires in him as last time. He's a fighter. We're told that he will be fine, but it's very hard to believe that after what we saw today. Please keep Anthony in your thoughts and prayers. Thanks for the balloons and card, Abby. We'll see how things go from here.
11PM UPDATE: Three nurses, a cardiologist and a surgeon have been working on Anthony since 8pm. They finaly got the second line in to start regulating his blood content and now are working to catch up to his needs. His kidneys have shut down, but expectations are that they can be restarted. We won't know for quite some time. GrandpaA is there tonight as Daddy has the flu and can't even see Anthony if he wants to. Mommy finally was able to fall asleep at home, and Daddy is on his last leg as he mans the phones. No news on any other organ failures. Anthony could be in this condition for hours or days. The doctors are now speaking in frank terms, which is never a good sign. I can't tell you what it feels like to be powerless as a parent. Some of you out there know what I am talking about. I've never been religious, but now is the time for prayer. Angela and I are wearing purple medical bands to show support for Anthony. If you want, please join us in solidarity and find a purple band of any sort and wear it for Anthony.


Updated 04-6-08
As of 6am:
Anthony is still in very critical condition. The staff was able to get a second line in his body and administer blood fluids. Currently he is at the edge of toxic shock syndrome. But there is some good news. His white blood cell count has come down from 75000 to 40000, he has begun to pee again, and his blood is clotting more normally. He became aware just a bit and GrandpaA was there to sooth him. Keep it up Anthony. You're our Champion. You can do it Little One.
As of 3:30pm:
Anthony is improving. He will still be in critical condition for a few more days, but his numbers and trends are improving. He is taking breaths on his own, but is still hooked to the breathing machine. He is being given very good percentage chance of making it, but it will be a rough road. The biggest concerns are: organ damage (especially the liver), circulation in his extremities, and whether or not the infection still exists in his bones. So far his numbers show those concerns are being reduced, but it's still a rough road. His brain has not been affected. He has had 100% oxygen the whole time and it's being absorbed just as well. We've gotten lots of emails and phone messages in support of Anthony. We really appreciate all the wonderful thoughts and sentiments. Forgive us if we don't respond directly as there is a lot going on, so I'll use this space to say...."Thank you very very much." We all feel Anthony will be fine and every positive thought helps. I have the flu and need to stay away from Anthony for a couple days (which really really sucks), and I can tell you that the silence in this house is deafening. Anthony has really made his own space in this house and it'd be nice to hear either him or his baby monitor making some noise around here....soon.
As of 11pm:
Anthony's condition is still critical. His white blood cell count (WBC) and temperature are the main indicators of his health right now. His WBC is currently at 50900 (normal range is between 4500 and 10000). His temp is currently 98.1. What I haven't mentioned yet is the fact that those numbers have been spiking and dropping during any given day. It's the overall trend that is important. And that trend has been gradually going down (that's good) since the doctors were able to get him the fluids he needed via the second pick-line in his leg put in about 1am this morning. Before that event his WBC was up to 75000. Today alone it was as high as 63000 and as low as 50900. Again, the overall trend is down....slowly, but down none the less. Some of you have asked to come and see Anthony. While the thought is a good one, the action would be bad for Anthony. His condition makes it such that we have been advised to limit his outside contacts to just the immediate family. Right now Mommy, Daddy and GrandpaA are the only ones allowed into the ICU to see him, and Daddy is restricted right now due to his flu. We have been taking pictures, but I won't be publishing any more until Anthony gets to a better state. Again, thank you all for your kind thoughts, prayers, and notes. Next update: tomorrow.




Updated 04-7-08
Anthony is still listed in critical condition, although he has been doing better. His white blood cell count has shown a drop to 45k as of 8am this morning and his temp is normal. The docs took his pick line out and put an IV in his arm to continue his medications. They keep removing and putting lines in due to the possibility that the Staph infection could cause irritation to a vein if a line is left in for too long. The cultures taken yesterday show negative for Staph in his blood, but another 48 hours is needed for confirmation. Anthony is receiving more blood transfusions due to the docs taking so much blood for cultures and other tests. Anthony looks very puffy right now, so still no pictures. The bruising on his leg from surgical blood transfusions is a concern. The skin specialist rates them at a 4 out of 10. Measures are being taken to protect his skin and legs. Anthony has become aware, but not very cognoscente. He can see people and follow objects with his eyes, but he has a very far away stare. Even though some of this is good news, it's still quite disheartening to see our son in this state. If it weren't for the infection he would be home by now laughing and having fun. Daddy is still laid up with the flu. It sucks to be on the sidelines. Mommy and GrandpaA continue to comfort Anthony by talking, signing and playing with him in any capacity they can.
As of 11pm
UCSF doesn't really have criticality categories, but the docs are willing to say that Anthony can now be considered...moderate or guarded. There's still a long 6 to 8 week road ahead of drug administration and healing, but all indicators are now showing positive. Organ functions, circulation, WBC, etc are all going positive. Regardless of Anthony's condition he will stay in ICU for at least another week or so. The bruising on his leg is being looked at by skin specialists who feel that no treatment beyond topical will be needed. Anthony's belly is a bit extended, but judging by his farting, that should diminish. If so, then he could be eating in the next couple days. (He's always been a gassy baby.) His drain tubes will stay in for an extended period of time just to make sure he drains completely, which will reduce a possible PPS reoccurrence. Saturday (4/5) Anthony had gone into septic shock and could have expired. In the words of Anthony's surgeon, "...I'm thrilled. Saturday night alone Anthony made progress that would normally have taken a full week." Late this evening it was found that Anthony still has mucous collecting in his lungs. The docs are keeping an eye on this, but all seems controllable. Organ function is good, but a close eye is being kept on his liver and kidneys. So.... We're not out of the woods yet, but there is cause for hope and reason to smile. Meanwhile, Daddy is still down with the flu and feeling pretty depressed about being stuck on the sidelines. (I hope I can get back to see him by Wednesday.) In the meantime Id' like to hold up a mirror to all of you out there who have supported us via messages, notes, prayers, thoughts, and actions. The purple-band was something to help ourselves feel a little closer to Anthony. It's wonderful to see & feel that others have joined. Thank you so much for all your support. Here's a snapshot of Team Anthony.


Updated 04-8-08
As of 1:30pm:
Wow...two whole weeks...and this is the second stay...poor Little Guy. He shouldn't have had to go through this. At this point Anthony is doing well, but is still in guarded condition. His WBC is now down to 31k, which is great, but there is some concern on his liver and kidneys. Anthony has begun to pee more out than he is taking in, which is good, but the septic shock his system suffered on Saturday has reduced his liver and kidney functions. (By how much is yet to be answered.) The docs say that they will heal and are watching them closely. Anthony's breathing tube is still in and may be removed tomorrow. Sometime today he may be fed Mommy's milk via a TPN tube. Anthony will have the pick-line in his left leg removed today and replaced by a line in another location (more poking and sticking). That is the current procedure going on right now. We'll post a second update late today on that and other progress. The cultures taken post second surgery have come back negative and final. The docs will continue to take cultures daily to ensure the infection is gone. At this point it looks good that the infection is gone, but no one is willing to say that definitively. Daddy is still down and restricted from visitation, but Mommy is there now and keeping Anthony company. He is still heavily sedated and is slowly being weaned off of the stronger drugs in favor of lesser ones. Mommy and Daddy and both concerned on Anthony's brain development given that a lot of the drugs are amnesiac in nature. We'll be investigating those questions in the coming days. Again, thank you to all for the great messages and thoughts for Anthony's recovery.
As of 6:30pm:
Anthony is having the pick-line in his left leg taken out this evening. He will then have lines in both arms, one of which will be (hopefully) removed tomorrow. We are also hoping that his breathing tube will come out tomorrow, but that will depend on how much fluids still remain in his body. If the fluids in his body are still high, then it would be painful for him to breath on his own. We'll see how that goes tomorrow. His kidneys are functioning well, but at a reduced capacity (at about 6 out of 10 on the layman's scale). The docs say it could take up to a week for them to get back to full strength. His liver is doing a bit better at about 8 out of 10 with a week for healing. The infectious disease docs are pretty optimistic overall on his staph infection with current cultures still reading negative. He still is collecting mucous in his lungs that the docs say is created by the abundance of fluids in the rest of his body. Mommy and Daddy are still worried about brain development, but have been assured that Anthony should be just fine. Each hour brings a little more good news and Anthony closer to full health. He is still in ICU and not really photogenic at the moment. More updates tomorrow.

Updated 04-9-08
As of 1:00pm:
(Day fifteen of his second hospital stay) Anthony continues on the long road towards health. His breathing tube most likely will be removed tomorrow, not today. He can breathe on his own, but the docs would rather wean him off the breathing machine slowly. A test on his kidneys showed an anomaly that the docs want to investigate. We're told this is more of a precaution. They also want his kidneys to start doing more work on removing the fluids from his body. So they will be stopping the lasix, which dries him out, and stopping the antibiotic gentamicin, which can have an affect on kidney function. Later this afternoon the docs will perform an ultrasound on his kidneys to check all aspects and make sure things are going right. We'll know more on this later. The skin specialists will continue to use topical medications for his leg. The best news today is that his white blood cell count is down to 24.8k and getting closer to the normal range (4.5k-10k). He is still on two other antibiotics. Anthony will be on at least one antibiotic for the next 4 to 5 weeks. We're hoping that he can come home within the next week or so, and continue his meds regimen here. Anthony has come a long way in a short time. We're very proud of him.
As of 8pm:
The docs are gradually lowering Anthony's machine oxygen levels in preparation of removing the breathing tube. What they are waiting for is his respiration to come down to 40 breathes per minute from the current 60/min. That's a bit more than the docs would like, so removing the breathing tube could be another couple days. Anthony's kidneys are now the biggest concern. His BUN and creatinine levels were elevated in the last blood test. The ultrasound done today showed good blood flow and no stones, but his kidneys are still not working at the quality expected. Anthony's kidneys are only filtering 40% of the toxins from his body even though he is peeing very well. The docs are going to reintroduce lasix and stop giving him IV fluids to help reduce the overall fluids still hanging around his system. It may be another three weeks before Anthony has fully functioning kidneys. The docs are not sure when Anthony will be coming home as he is still considered in guarded condition. Mommy and Daddy are growing tired of living at the hospital. It's hard to have patience when Anthony's current condition statistically was not supposed to happen.
Next update tomorrow.


Updated 04-10-08
As of 12:30pm
Anthony doesn't wake up much, but when he does he is in incredible pain. Last night he woke up a bit and started thrashing in pain. The docs have ok'd the use of sedatives. His breathing tube was removed this morning (finally), and he now has an oxygen mask that's been fitted with a pacifier. His right hand still has an IV in it, so access to his thumb for sucking is still restricted. Anthony's belly is still a bit distended, but the docs see this getting better by the day. His kidney numbers are about 3x higher than normal today, and his white blood cell count rose to 30k this morning from 24k yesterday. Due to those and other factors the docs are now thinking that Anthony has interstitial nephritis, which is a reaction to the antibiotics. They are changing his antibiotic regimen to accommodate and we should see results within 48 hours. Anthony is a little spacey right now and is still on morphine, but he should be more aware by tomorrow sometime. It's hard to say what Anthony is experiencing. From his perspective he has been in the hospital for three straight weeks, which is about one-sixth his life. And we all know how children view time,........everything seems to take forever. Mommy and Daddy's perspective is about the same.
As of 11pm
Anthony had a quiet night. He hung out with GrandpaA and watched TV. Anthony's wounds were redressed by the surgeon today and looked good. His liver has just about returned to normal function. His potassium levels are a little low, which is odd, so we'll find out more on that tomorrow. Anthony is still considered in guarded condition, but he is improving. The medical facts are all in favor of Anthony. It's easy to see that the docs really know what they are doing. They are literally surfing Anthony's responses to the entire treatment program. One can only marvel at the human-machine and how it responds to what we've learned of its workings. We were told after the surgery that Anthony will be a healthy boy soon, but will go through some tough spots and that the surgeons were impressed with his constitution. We have experienced each of the expected results from his heart surgery and his current healing from the staph infection. The only anomaly encountered is the infection itself. ......So, it sounds like everything is going well, right? Well...right, but.... seeing Anthony in pain and having to go through it all is what feels the worst. No parent wants their child to have to endure something like this. You have to wonder how these experiences will be merged into his developing state of consciousness. .....Again, thanks for all the notes and messages. We're getting a lot of them, and it's hard to respond to everyone. Let me just say 'thanks' to all of our support system. Go Team Anthony!



Updated 04-11-08
As of 11pm:
Anthony is still in ICU and doing well, for a critical patient. Compared to a healthy child he's still not well at all. His kidney numbers were evaluated today by the Infectious Disease docs. By the numbers his BUN is 50, creatinine 1.55 and WBC is 34k. This doesn't mean much as they want to wait until after the results come back from the blood draw planned for 4am on 4/12. All of his blood cultures to date still show negative, so the outlook is good. His drain tubes are still draining and the quality of the fluid coming out is good. We've begun to ask when he may be moved out of ICU and there really isn't an answer yet. It could be another few days or another week or so. Either way it looks like he's still in the hospital for at least another two weeks.
If ya'll don't mind, Daddy wants to take a moment and say something. ......I took time off from work (medical leave) to be with and care for Anthony after his heart surgery. As fate would have it, the infection recovery now will eat up all of that time and probably continue into May. At best I see him at home for a day or two before going back to work. At worst, going back to work, I stay away from him during the week and only see him at the hospital on the weekends. That plus the fact that I'm still sick and currently restricted from seeing Anthony at all means that I'm pretty much robbed of most the time I took and expected to spend with my son as the "mall-walking-baby-strolling-Dad.", which is the only time in Anthony's life where I'll be able to have *this* much time to take. In my opinion almost six weeks wasted. That may all be a glass-half-empty thought, but after spending a full week at home with minimal contact via phone it's really hard not to feel left out and a little cheated. I'll still be there for him when I can and make the most of it for him. But when fate intervenes and changes carefully laid out plans to spend more time with your child it really hits hard. Maybe there's a way to restructure the coming weeks, I don't know. (sigh) We'll see. ......In the meantime I thought a picture of Anthony with some dignity was worth posting. He's looking a hell of a lot better in this photo than the past few days. The blanket covers what we'd rather not show to the world. Also, new additions to Team Anthony!


Updated 04-12-08
Not much to report today. The docs are still monitoring Anthony and keeping an eye on his kidneys. His numbers have gone up again today, but not by much. Anthony cries from time to time from discomfort and the pain from his drain tubes. But his cries are very hoarse due to the breathing tube being in for so long. Taken right now, with Anthony's current progress trends, it looks possible that he will be in the hospital for another 4 weeks. We are still trying to confirm this, but it doesn't look like he will be coming home anytime soon. Mommy and Daddy are not very happy about that. The weather outside is warm and wonderful. Without the infection Anthony would have been home by now enjoying the sunshine and fresh air. No one knows for sure how babies process and store memories, but Daddy and Mommy will do our best to make sure this experience will be built into a memory of strength and not an experience of fear and pain. Tomorrow Daddy finally gets to see Anthony. (I've taken pictures from all around the house from Anthony's point of view to show to him on the laptop. I hope we can keep that connection going instead of the hospital being the norm for him.)

Updated 04-13-08
Anthony went code-blue last night. The docs had removed his breathing tube over a day ago to see how he is doing on his own. Last night his heart rate went irregular and his breathing was labored. Mommy called the nurse who checked his wires and connections. When all that checked out ok the nurse sent the code-blue signal, which prompted a flurry of activity. Daddy rushed in from home to be with Anthony. When I arrived the echo was being completed and things were calm again. The docs are not 100% sure what happened, but today they feel confident in saying that his edema (extra fluids in his body) are still too much for his system to remove on its own and therefore a strain. So they put the breathing tube back in and worked his meds to make it easier for his body to concentrate on removing those fluids. By late today his kidney functions were doing ok. The docs will keep the breathing tube in for a couple more days until his edema starts to decrease. The good news is that Anthony is peeing quite a bit, so something is working well. It's a delicate balancing act between maintaining his medications and allowing his body to take over. This is what ICU does. They monitor Anthony down to every last detail to ensure that he is able to function on his own. Today was Daddy's first day in a week to see Anthony, and given our work situation, one of his last. (It's going to kill me to go back to work and try and concentrate on other things while Anthony hangs in a balance.) Cousin Roseann flew in for a three day visit. Mommy picked her up a while ago and they will be arriving with GranpaA in a few minutes. Meanwhile..... Anthony and Daddy had a great time today. He played with his toys andseemed as if the night before had not happened. Here's a movie of Daddy and him play with a toy. It's hard to suck on a chew toy when you have a breathing tube rammed down your throat. Poor little guy.

Updated 04-14-08
So......Saturday night was a pretty big scare. By tonight Anthony seems as if Saturday never happened. His blood numbers have come down. His WBC is now down to 18.2k and starting to enter the normal range. His kidneys are still a concern, but his numbers there are also doing well. His BUN is 40 and his Creatin level is at 1.55. As those two numbers go down his kidneys will show improvement. Of course, the best indicator is how much output (peepee and poopee) he is putting out. The past two days Anthony has put out more than he has taken in by a substantial amount. The more he outputs the less his edema becomes. The less edema the more likely his breathing tube will come out. Right now the docs think they may be able to remove the breathing tube (again) by tomorrow morning. Mommy and Daddy will make sure to be here for that procedure. His numbers are doing well due to the Infectious Disease docs tweaking his medications. Anthony has been through so many different antibiotics to control his system that they are starting to repeat others that were previously haulted. Each combination affects Anthony differently and is designed to tackle his infection in different ways. This current combo seems to be doing the trick for his current condition. It's almost as if it's better to pray for the doctors to know what they are doing rather than praying for Anthony directly (although we might as well pray for both). We really do have that much confidence in the doctors. They all have taken the time to explain to us just what they are thinking and what actions they will be taking. On the lighter side......Anthony had fun with Cousin Roseanne again today as she read him the book she brought from NY. Daddy also had some fun with Anthony as he played with his toys and Daddy's nose. We'll see what tomorrow brings. Some pics.

Updated 04-15-08
How does one say that things seem to be going well without jinxing the situation? By the numbers Anthony is doing very well. The infectious disease docs, the cardiologists, the skin docs, the IC docs, the nurses....everyone agrees that Anthony is doing well. His edema has gone down considerably, which prompted the removal of his breathing tube this morning. By the afternoon he was placed on the little nose oxygen tubes. By late afternoon he was playing with Cousin Roseanne and actually had a couple laughs with Daddy. His kidney numbers have gone down a bit, but his WBC is still hovering around 20k. No big deal at this point, say the docs. All the cardiologists are happy with his progress and not worried about any of the issues that were bigger concerns in the past. Of course, Anthony is still considered in guarded condition and will be in the ICU another week and then in another room for a while. We're hoping to set up some sort of home-nurse situation in the future, so he can continue his antibiotic regimen at home. The docs are not saying when any of that will happen. But for today.....Anthony is happy and playing with his toys and is very aware. Since he is off his big time pain meds he really hasn't calmed down enough to sleep since this morning. He'll most likely crash this evening. Here's some pics.

Updated 04-16-08
Let's take an inventory. Anthony's open heart surgery took place on 3/19 and Anthony recovered fine and was sent home on 3/24. 36 hours later he showed signs of PPS (fluid build up around his heart) and was admitted back into the hospital. The PPS was treated and reduced in about a week. Around that time Anthony developed a cold and was quarantined. Somewhere during that time Anthony contracted a staph infection that was masked by the cold and only became visible on 4/2. Three days later Anthony was rushed back into surgery to open his chest and clean out the infection that had began to eat away his chest bone. The surgeon also drained any left over PPS fluid from around his heart. That's two open chest surgeries in three weeks. He was placed back into ICU and on a 6 week antibiotic regimen. One week later he went code blue and had all the doctors around here very worried. Not to mention Mommy and Daddy going a little bonkers. The result to Anthony was acute renal failure, systemic edema and a white blood cell count that set the record for this hospital. Since then it's been a long and bumpy road, but Anthony has been improving. As of today all the doctors are breathing a sigh of relief. Mommy and Daddy are still traumatized and are paying attention to every little sound Anthony makes. The numbers the doctors are paying attention to the most are his white blood cell count (WBC), creatin level and his BUN level. His WBC is at 15.8k (normal is between 4k and 10k). The other two numbers relate to his kidney function. His creatin level is at .92 (normal is about .3) and his BUN is at 23 (normal is about 10). So, he's doing well except....the antibiotics, which also give him diarrhea, have caused a whopper of a diaper rash that has actually produced some bleeding and is heading into yeast infection territory. The docs are on this with some big time ointments. ......Poor little guy. He has (quite literally) been put through the preverbal ringer. Anthony's disposition is remarkable. He has taken all of this and was still able to smile and laugh a little with Daddy and Mommy today. He is still considered in critical/guarded condition. No one knows when he will be moved out of ICU or when he might come home. Suffice to say that he most likely will be home.....sometime in May.....we hope. Emotionally it's been a roller coaster and our only concern is for Anthony's well being. We really don't want him to start considering the hospital to be....normal. We just want him safe, sound and HOME. (sigh) ........here's some photos for today. Each photo is just one small mini-happy moment mixed in with all the other moments that aren't so happy. .......and the food sucks.


Updated 04-17-08
We got home last night and had a message waiting for us. In the time it took to drive home it was decided that Anthony was to be moved out of the ICU and back to the transitional ICU he originally came from. Even into the same room he occupied when the staph infection was discovered. The very same room that Daddy stayed in with Anthony and got sick. He was moved in the very late evening. GrandpaA stuck around to see a smooth transition. Mommy and Daddy decided to stay at home, rest up and prepare for tag team over night stays. Although, a full overnight stay may not be needed. If so, then Daddy will take the first night with Anthony and Mommy the second. It's best to do this as Anthony will be in a private room and will need to be looked after more than the nurse rotations can perform. Anthony still has lots of mucous that he is coughing up, so we need to perform chest PTs on him, which is simply banging on his back with a cupped device. It loosens up the mucous in his lungs and helps clear him out. Anthony's edema has gone down considerably, enough so we can see that he has lost some weight. He eats well from the bottle, but since he is on a feeding regimen, what he doesn't take from the bottle will go through his NG feeding tube. Earlier today the nurses removed the arterial line from his right leg. So....here's the inventory for today: mucous clearing from lungs, 3 drain tubes still in his chest, one pick-line in his left arm for antibiotics, oxygen in his nose, and an NG feeding tube up his nose (just in case). We're told that next week he will be evaluated for possible going home. He will still need to have a home nurse show up to administer the antibiotics, which have another 4 weeks to go. Let's hope for the best. Mommy accidently brought the camera home, so no easy way to put pictures up for today. See ya tomorrow.

Updated 04-18-08
It's been a full month. Anthony was pre-op on 3/18 for his heart surgery. Since then it's been a traumatic roller coaster of the unexpected. ....And the roller coaster keeps on going. Anthony had a rough night last night. Anthony's feeding tube enters through his nose and goes to his belly. His big 9pm feeding included a potassium concentrate that doesn't really agree with his belly. So he wound up spitting up a bunch. So much so that he coughed up his feeding tube. The nurse had to pull it out through his nose and reinsert it in a different nostril. You can imagine what it feels like. Anthony was drugged up a bit for the process, but he lived through the worst of it. Needless to say...he slept through the night with all those drugs. At noon today he had all three of his drain tubes removed. Kind of a surprise as the docs really didn't let us know that they were thinking to remove them so soon. But this is really good news. It means that the docs are satisfied with his system's abilities (kidneys) to take over fluid control and relief. His numbers for his kidneys have also approached normal levels. And now there's rumor that he could be released sometime late next week (just a rumor as some doctors hadn't heard that). Either way....here we are: seemingly just days away from putting most of this behind us. Anthony will need to be on IV based antibiotics for another four weeks. .......From Anthony's point of view he may not remember the details of all this, BUT........ it stands to reason that during the past month of his brain development, while staying here and experiencing trauma after trauma, that some of his neurons got permanently wired together based on that trauma. How that wiring will manifest over time is what we need to watch for and provide comfort. As of now Anthony is more skiddish of noises, wakes up with a jolt and quickly looks around the room with a fearful look on his face, and is more wary of strangers especially ones wearing latex gloves. We'll see how it all goes. Daddy and Mommy are now starting to work out the details of what the month of May will look like as each of us has work duties to get back to. We also are trying to find a way to make sure we have some time as a family to spend together in some manner of normalcy before subjecting Anthony to full time day care. Daddy and Mommy's work places have been really great at providing alternatives and letting us figure out how things will go for Anthony. It's been days, and now weeks, that we've been living at this hospital. "Stir crazy" is only the tip of the iceberg. What we hope for is some time as a family at home before heading back to work. It would feel really weird to end the month by bringing Anthony home, then heading to work the next day especially after the surprise train wreck of a ride we've all been through. Anthony ended the day today with Daddy giving him a sponge bath and learning how to change his leg dressing. Here's some pics for the day.

Updated 04-19-08
The worries are getting less in number and less in severity. Right now our biggest worries for Anthony are: his bad ass diaper rash, his white blood cell count (and antibiotics), his leg bruises, and his chest wound. Two days ago his diaper rash was so huge, red and so tender that it drew blood just to dab at it. Now it's way better and is just red and needing less medications. His white blood cell count (WBC) is going down daily, which is a good indicator of the overall infection. The docs will reintroduce the rephampin antibiotic real soon and then monitor his WBC and creatin numbers as that's the drug that can affect his kidneys again. Normal kidneys should be fine with that drug. His leg bruises from the transfusion in surgery have diminished to less than half of what they were and are doing fine. His chest wound has got Mom and Dad still worried, but the docs think things are going well. His chest wound was where the staph infection occurred in the first place, so it's understandable that we'd be a little over cautious. ......Anthony had a good day today. He was very responsive, playful smiley and a little flirty. Both Daddy and Mommy read him a book and got to hold him a whole bunch. We even got permission to unhook him from the machines and go for a ride in the little red wagons they have around here. We wheeled him up and down the halls. Anthony even met a little girlfriend (patient) next door. She's a little older than he is, but they got along well. Overall it was a good day for Anthony, Daddy and Mommy. Aunty Claire and Uncle Bill showed up for a quick visit and will probably show up tomorrow too. Here's some pics for the day.


Updated 04-20-08
How we can go from last Saturday with a code blue to today, an uneventful day of naps, feeding, & playing, is certainly a head scratcher. In that one weeks time Anthony has recovered a great deal and is being groomed for going home soon. One of his antibiotics is being converted to oral so as not to have too many drugs administered via an IV when we do go home. This of course raises a bunch of questions that Mommy and Daddy are exploring like: what's the best method of oral meds? ...and... is this the right move for his particular condition? Any med change will require a few days of monitoring in order to make sure Anthony's kidneys can handle the change in meds and the change in method of delivery. For today Anthony really hasn't eaten enough. He's only had about 10 ounces of food for the day. We'll see how that goes. So.....for the moment....its monitor, monitor, monitor.....and fatten him up. The antibiotics make him have diarrhea, so we have to make sure his input is larger than his output. .....Anthony had another ride in the wagon today with Mommy and was carried around with Daddy for a bit. Camera was left at home, so sorry no pics.

Updated 04-21-08
Anthony has got a lot going for him. The doctors have been impressed with his constitution from since his heart surgery, recovering from that event with speed and strength. This latest bought with a really really nasty staph infection also has them impressed with his strong constitution. He has shown excellent progress throughout his stay here. He has suffered a few set backs only to show leapfrog abilities soon after. Anthony isn't exceptional in this respect as other children have done even better than he, but without a doubt we have been blessed with a very strong and overall healthy baby. Of course, Daddy's accidental doubling of Anthony's formula mixtures during the first three months of his life helped to fatten him up for the long haul. Anthony has lost some weight. He's down to about 13.5 pounds from his initial 15.6. We hate to consider what his health would have been had he not had some initial 'poundage' available to get him through the rough spots. Anthony's blood numbers are also doing well today. His creatin level is .29 (very normal). His BUN is 10 (very normal). His WBC is 8.5k (very normal). His leg bruises are healing well and his chest wound has also received a thumbs-up from the docs. Next up is an echocardiogram sometime in the next 36 hours to check out his insides and see how things are doing from that perspective. The rumor is stronger today that we might be sent home at the end of this week. Anthony would need to show the same or better progress as of today in order for him to be released. .....IF Anthony is allowed to go home, then Mommy and Daddy would take over his care. We would need to change his leg dressing twice a day, administer meds three times a day and tend to his chest wound once every three days. Also, if he were to go home, Anthony would need a home health care nurse to show up each day to administer one of his antibiotics via the IV line currently in his arm. That nurse would also check on how Mommy and Daddy are doing in the other areas of caring for him. If a home health care nurse can not be worked out, then we would need to drive Anthony in to UCSF once a day for the antibiotic IV. Either way we would rather have Anthony home if and only if the doctors feel it is 100% safe and proper. ........Anthony's disposition today is also doing well. He was a little tired and slow yesterday, but seems more up beat today. The docs told us that he will go up and down a bit on that issue as he continues to heal. His appetite is also getting better. He doesn't have the feeding tube in any more, and is taking all his food from the breast or bottle. Solid foods will be reintroduced in a few more weeks. So, Anthony only has two things hooked up to him at the moment: heart monitor wires stuck to his chest, and an IV pick-line in his left arm. The pick-line may be changed to a new location before being released, which would be more poking-n-stuff, but it would be worth it for a clean line into his system. Here's some pics and vids from today.

I'd like to take a moment to recognize something very important. Anthony's Grandpa B (Poppie) in NY has been going through chemotherapy and radiation treatments for throat cancer for the past month or so. Tomorrow Poppie will undergo a surgical procedure to implant a device in his throat to help focus future higher dosage radiation treatments. Anthony loves that everyone has been pulling for him to get better, but Anthony wants everyone to focus attention on his Grandpa B (Poppie). Grandpa B hasn't been able to see Anthony due to his treatments, but this last big procedure should be the one that will make Poppie all better and able to come visit Anthony. Anthony has asked me to type the following quote, "Grrrabbbblle preefffpppttt boo beu. Grappbb pttberp." Translated that means, "I love you Poppies. I know you will be ok."

Updated 04-22-08
Well.....hats off to the doctors. They brought Anthony from a poor heart to a healthy heart, and from a life threatening infection back to almost full health. Anthony still has 4 more weeks of healing and an antibiotic regimen to complete, but he's on the right track. It's hard to say that given all the ups and downs we've experienced, but we have to look forward. There were some episodes that weren't written about on this site. They were minor episodes in hindsight, but it was nerve racking trying to make sense of why road blocks kept dropping in front of us. The doctors have been on top of each and every issue, most times having answers before we had questions. Today the docs have conferred and consulted amongst themselves and are now trying to put some truth to the rumor that Anthony could go home this week, Thursday at the earliest, Friday at the latest. Anthony had an echocardiogram today and it showed that he is doing very well. He still has what is called a mitocardial regurgitation (unchanged from his last echo), which is a little blood going back through the left ventricle. This is due mainly to his heart being a little widened from the higher pressures needed to circulate his blood for the first four months of his life. The docs think that this issue will eventually fade as his heart grows and the VSD patch in his heart keeps working to close the hole. They will be performing echos on Anthony regularly in the future to keep an eye on it. So...... besides all the things Mommy and Daddy will need to do to care for Anthony (mentioned in yesterday's post) we also will need to do some physical therapy for him. Tomorrow the PT doctor will be stopping by to show us how to strengthen Anthony up again. He's lost some leg and trunk muscles and muscle control. Before any surgery Anthony had the ability to go right to a standing position by pulling lightly on his arms. He loved to stand. Now, his legs are a little weak and he doesn't really stand well anymore. We knew there would be some developmental set backs, but every article we read and/or doctor we talk to shows that all babies bounce back quite quickly. .......Today Anthony had a great time. He laughed a lot and started using his 'talking voice'. We had permission to keep him unplugged for most of the day and even brought him down to the infant playroom to meet other kids and play with some new toys. That time was cut a little short as we needed to get back upstairs for his echo. I'd like to take a moment to say thanks again to everyone for the nice notes, emails and gifts. We really appreciate all the support everyone has shown. The purple bands and pictures sent to us were very touching. We've saved everything, so when Anthony gets older he can see how much support he had (has). Again, thank you from the bottom of all of our now healthy hearts. Here's some pics-n-vids for the day.

Today was Anthony's Grandpa B's surgery for his throat cancer treatment. We are happy to report that Poppies is doing fine after the initial surgery and will now be in the hospital for the next few days for high-dose radiation treatments followed by a final surgical procedure. Anthony wants his Poppies to heal up quickly so both he and Glamma can come out to visit real soon. Both Poppies and Glamma would have already been out here to visit Anthony if it wasn't for Poppies cancer diagnosis. See you soon, Poppies. Get well.

Updated 04-23-08
Anthony had an easy day.....Daddy had a rough day. Mommy has to work today and tomorrow. Anthony is doing fine. All his numbers are great. His disposition today is awesome and he smiled at everyone. Anthony's had two major naps and is eating well. Meanwhile.....Daddy arrived this morning to the physical therapists putting Anthony through some paces. He was laughing because the therapy seemed more like play to him. BUT....the PT docs didn't notice that Anthony had pooped right in the middle of their 'exercises'. When they saw the mess that was creeping (excuse me) ....oozing out of his diapers and all over his bed they said "Good Day" and ran. It was ok as Daddy got all his questions answered. After an hour of cleaning Anthony, his bedding and his wires it was time for Daddy to learn how to redress Anthony's chest wound. It was easy, but there is a lot to remember, so the nurse wrote it all down for us. Next came some feeding and giving of meds. Then I was told that Anthony is definitely going home tomorrow. (YAY!!!!!!) This meant I had to run down to the pharmacy to grab all his meds for the next month, then meet with a number of people so the hospital is ok with releasing him. Daddy got crash courses in a lot of hospital red-tape and processes. So.......... by 2pm tomorrow (4/24) Anthony will again be home. At 3pm the IV nurse will arrive to drop off all the equipment and instruct Mommy and Daddy on how to administer the IV antibiotics. We will be giving Anthony the majority of the IV meds as they will also happen at night, but the nurse will show up once a week to check up on us. Anthony will also have two visits per week back to UCSF for blood draws and tests to make sure he is still on the right track. ............Mommy and Daddy are thrilled beyond belief to finally have Anthony on his way home. We can't wait to hug and play with him in his own environment. (Which reminds me....we gots to do some major cleaning this weekend. The house has gotten a bit dirty, but Anthony's room is spotless and ready for him.) Grandma P will be here this weekend to help out and I'm sure Grandpa A will also scrub a few spots to help out. I'd like to thank everyone for the support you've all given us. From the "Purple Band Gang / Team Anthony" to everyone who sent nice notes and thoughts, to the prayer groups, to the groups of friends, to our entire family and to our neighbors. Anthony has had the best care through all of this. Mommy and Daddy will be very happy to remove our purple bands tomorrow night. Anthony still has four more weeks of meds and healing, so there will still be updates here, but at least we are out of the hospital......this time for good. (We hope.) Here's some pics from last night and today.

I also want to let everyone know that Anthony's Grandpa B (Poppies) is doing well after his initial surgery. He still has three or four more days in the hospital for radiation treatments, but he is doing well. He doesn't feel well, but he is doing well. There's a pic of Poppies at the end of the pics for today. Get well Poppies! We love you!

Purple Band         Team Anthony

Anthony Update: April 24, 2008 (Hospital Stay #2 - Day 30 - Goin' Home)
Anthony...is....home! One month to the day, almost to the hour (1pm today). Not many pictures were taken as Daddy was by himself and was changing dressings, getting instructions for meds, packing things, then driving home....with Anthony. Our only stop on the way home was to see Mommy at her work. Anthony was napping in the car, but woke up enough to smile at Mommy after some kisses. The next Anthony awoke, was in his own crib. He opened his eyes really wide and looked around his room, then to me, then to the dragons, then to me, then around his crib, then to me.....then he smiled. He knew he was home. Anthony has been enjoying himself since. He was laughing with Daddy, Mommy and even with the home nurse. It feels wonderful to have Anthony home. We spent all night holding him and showing him around the house. He actually did seem to be a little happier after coming home. The rest of the time was spent organizing all the "stuff" for Anthony's care. His leg and chest dressings are all separate stuff therefore two different boxes. Glamma was on the video phone supervising from NY for his nightly leg redressing. The antibiotics via IV is a whole other story. First off our insurance company decided to use (ahem) Wallmart for the home nurse services, meds and supplies. We'll see how it goes, but to start....I found out the Heprin supply used from Walmart did contain the contamination mentioned in the news. We were told that the contaminated lot was purged, but to check our labels. Meanwhile, if we were allowed to use the UCSF services the Heprin supply would have come from a different manufacturer and never would have been threatened. So....If you know about the Heprin scare from the news.....we are forced by an American insurance company to use a drug supply for our son that is made by a collaboration of drug companies (Chinese and domestic) without the same set of regulations. If you think I'm implying something....then you'd be right. If you think I'm upset that we're approved for great medical care, but only get the cheap side of life for outpatient care....you'd be right. But who am I to suggest that our current governmental policies allow such limitations to exist. As good as our insurance is, the corners they cut have affected us and could again.....if we're not carful. (Yeah, right....small complaint compared to an infection, but when you're on your own at home...it's a bit scarier.) Anyway....... Administering Anthony's IV antibiotics actually is pretty easy. The delivery device is simple and operates without gravity or needles. It was designed by the Navy for use in all conditions. A description is in today's photos. It's a bit scary to give meds this way to your child. Besides the scare of the med is the scare of proper handling and operation of the method for delivery. Mommy and Daddy have been studying how the nurses do things and have been instructed by many people, but......it's scary to fly solo. The home nurse will show up once a week to check on things. We also have weekly appointments at UCSF for blood draws and such. So.....Anthony is fine and happy. Meanwhile, Mommy and Daddy float from happy to nervous with dosages every eight hours round the clock. (sigh) .......But really...... It feels so good t to have him home. We really are grateful to have him in our own care. He's sleeping in his own crib right now with us right next door to be there even faster than the nurses could. And to hear him around the house makes this place seem so much more alive. Tomorrow we're going to finally take a day and relax as a family. Here's some comin' home pics.


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