.....................No go today:(

Zachary up and ready to tackle the day with no issues so we can go home tomorrow.

Well today is a no go home day. Dr. said she wants to make sure another evening episode doesn't happen again tonite and that Zach will be up more today and eat and drink and go potty. So far this am he has had a ice cream, 1 sausage link, and 1/2 egg muffin sandwich. He has been drinking a little also. In about an hour we will head down to the cafeteria to have lunch. He has been up since 530 am and is still in a great mood. He has a male nurse today that likes the Red Sox so we all know how much he is enjoying that. They are going against each other since Zach is a Yankees fan. Great guy and really nice and a pleasure to let him take care of zach. I wanted to post a couple pictures then off to lunch we shall go. Then we have to go to stop at the gift shop because i was told we have to get a couple "Gifts". I have such a thoughtful little boy.

Zach showing off his "Mrs. Brazee" lips

Zach getting a "Mrs. Brazee" kiss. I told him I was going to bring them and I did. He loves them even though he will be like please mom don't. LOL

................Day #4 Post Op

Well we started the day out great. Zach was up around 6 and watching TV. He napped in the am then got washed up and in his wheelchair. We went down to the lobby to watch the ball maze thing and visit the gift shop (His favorite thing to do. He must think it changes daily. LOL) After we went to the cafeteria for lunch and he had 2 french fries, 2 bites of a chicken finger and 1/4 of a bottle of Hawaiian punch. But by the time we got upstairs he was very uncomfy in his chair and wanted to go back to bed. He took a nap so I took a nap also. We both must of needed it because we slept for 2 hours. Then he woke up saying he had to go potty but couldn't go. We kept trying like every 1/2 hr and nothing. Then he started complaining his stomach was hard which it would be his bladder was so full and his cast was tight in the belly area. He did say he was hungry so we ordered dinner and he ate all of his hot dog, 2 bites of corn, and 1/2 of his ice cream and pineapple juice to drink. Time went on and he still didn't go to the bathroom so finally he started screaming he was uncomfortable and they tried to straight cath him and nothing because he was so tense. About 5 minutes after that he went on his own and then said he felt much better. So they went to change his iv fluid and his iv had blown out so they had to take it out. They said since he had gone to the bathroom and he already had a lot of fluid he should be ok if he keeps drinking. Well around 8 he kept telling us he was freezing (now this whole week he has been sweating and not wanted anything on him) so I knew that was odd. We covered him with a sheet and he was still cold and wanted a blanket. He had the blanket pulled up to his neck and his burpy (his blanky) over his face and still complaining he was cold. He fell asleep and they came in to give him his meds and he was miserable. Didn't want to be bothered or take his meds. We got him to take 2 of the 3. The 3rd one went in but came right out along with everything he possibly had to eat today. What a mess it was, but we got him all cleaned up and now he seems to be resting again. Not peacefully because he is kinda moaning. We are waiting to hear back from the resident on whether or not they will be putting another iv line in.

We were possibly going to go home on Monday if he could/would drink and pee but now with this episode I am not to sure. Maybe if he is ok during the night its a possibility still to go home. Thanks again all for following and thinking of us. Off to lay in the bed with him and make sure he does settle down for the night.

................Day #3 Post Op

I thought today would be a crazy/bad day seeing Zachary didn't sleep well last night and had a lot of pain. Well he was actually pretty good in the day and got up in the wheel chair for a couple of hours. He even went to the cafeteria for a small lunch. This afternoon he was up for a long time in the bed and wheelchair. We did have to put him back to bed because he was having back pain/shoulder pain. Pain enough to the point that he was crying it was so bad and just thrashing in the bed. We had to take his brand new Phineas and Ferb tshirt off because he was all sweaty. For him to take that off says alot because he likes to be covered up especially with people coming in and out and not wanting people to see him. Once we had him in bed he got some heat packs for the back which he said didn't help. Once it was time for pain meds he got them and more heat packs and then fell asleep for a couple of hours so it was safe to say the pain eased up a little. The nurses are running around kinda crazy because his O2 keeps dropping and he is setting the alarms off. His BP is really low for him too 103/55. They have called on call resident so I have no idea whats going on at this point. If I don't blog through this all I will be in panic mode and we don't need a upset little guy and a crazy mom. They are trying everything and waiting for resident to call back at this point.

I have a couple pictures I took of him up in his wheel chair snoozing. If I try to take any pictures of him awake he yells at me and gets upset so I haven't tried again because no sense of making him upset.

OK I am not publishing this until everything settles down. I want to make sure I have it all documented so I may just keep going on and on. They just did a protable xray, running a bag of IV fluid (Bolus), gave him some pain meds. They are holding his bp meds due to it being so low for him already. He does keep yelling at us for making the bed move while no one is near him or the bed so they are kinda concerned why he is feeling this way. (Personally to me is acting like when he has a seizure episode just a little worse especially with the irritability) We are still waiting for the dr to come up but it might be a little bit because she is down in the ER. Until the next thing that happens I will just sit back and try to relax since he is settling down a little .

OK its been 1 1/2 hrs and he is all settled and everything seems to be back to normal. BP is ok, HR is ok, and O2 is back up to 97. They are thinking he was dehyrdrated because things bounced right back up. WIll post again if something happens but for now I am heading to bed to get some sleep.

................Long night for the little man

Last night was a very long night. Zach was up most of it and not happy. He kept complaining of a stomache ache, not being comfortable, throat hurting and his leg being squeezed. We figure his stomache hurts because he has not been eating but taking pain meds so I got him to eat 1/2 a thing of pudding. Then his throat is probably because of the intubation tube from surgery. We gave him some pain meds and repositioned him to see if we could help with the swelling. He has to lay now with his head pretty flat and pillows up under his butt and leg so its in the air to allow for elevation. Since doing this he has taken a nap and seems more happy. I on the other hand am exhausted but a moms job is never done so the day will go on. We are hoping to get him out of bed in his wheel chair again and down to the main lobby to the gift shop so he can just get out of the room.

His O2 levels have been really good since coming off the morphine so probably no more O2 either. He was asking this am what all the numbers on the screen meant so I knew he was more with it, at that point. His favorite nurse Danielle is back with him today so he perked up to that also. (Yes Mrs. Brazee he has girlfriends here to, that boy of mine is just something. LOL) I got him to eat 1/2 of his french toast and a can of pineapple juice. I bet from this day forward we will start to see the real Zach come back to us. We might take him to the cafeteria for lunch instead of ordering his room service. (Yep the kids get room service. You order anything they want off of a menu. No specific meals like most hospitals, and the food is actually pretty good. Great choices for them also. They also allow parents to buy a tray for $7.00 and you order as much as you want and what you want and it comes up with the kids trays.) Did I ever say how much I love Childrens Hospital Boston? They are great here and they do the best they can to make everyone feel welcome and help you with anything you may need or want.

....................Pictures from this week so far

Here Zach is waiting for the Doctor to come in patiently. They were waiting for his lab results so they could give him the final clearance for surgery. He was watching the clock because time was ticking and he was afraid we wouldn't make it to the childrens museum.

Zachy being a construction worker at the museum. What a great place to take a child. So many interactive activites and of course we spent most of the time in the construction zone.

Mr. Bobcat driver

Concentrating so much on sawing, but he wasn't being very protective. His goggles where on the top of his head instead of covering his eyes.

Zachary on Day #1 Post Op

Zachary Day #2 post op. Up in his wheelchair which he wasn't to happy about at first but as you can tell he fell asleep so he didn't know the difference.

.................Day #2 Post Op

Today started out as a great day. Zach was up around 630 and had a great night of sleeping. He was up till around 930ish then got real grumpy/nasty to us. He was able to get his 1 iv out, catheter out and was told to drink some more so they could try to get the other iv out. Well he was drinking pretty good but ended up having the iv back on because he stopped drinking. He has only ate 2 bites of french toast and 1 strawberry. Every time I ask him if he wants something he gets agitated. He then took a nap and woke up happy again. He got up in the wheel chair and slept in it for about 3 hours. After that he has been a bear again and yelling at us all. I was trying to give him some AJ and he started yelling its poison you just want to kill me. Get me out of this dump, you all want to just kill me thats all. It's hurting me so bad to see him like this, but I know some of it is because of the pain meds. As I type this now he is sleeping comfortably.

He had his favorite nurse from last time today, and she tells him like it is and makes deals with him which seem to work best. She is coming back tomorrow so hopefully we will get her again.

..............Day after surgery

Today was a little long for us all. Zachary really isn't waking up and when he does he is in such pain he gets a dose of morphine and goes back to sleep. He is able to keep his eyes open for about 2 minutes before he closes them again. I am trying to push some fluids on him but he wants nothing to do with them either. We ordered him a tray for dinner but he wouldn't touch a thing on it. We thought maybe the smell would get him to eat. Nope not a thing not even a sip of his milk shake.

The nurse had him get up in the recliner chair which he wasn't happy about, but he was up about 2 hours. Well I wouldn't say "UP" but he was up in the chair that long. He is back in bed resting now and every so often looks over at me and I get the evil look from him. My poor baby boy I wish there was something I could just do for him. He got a new wheel chair today. His cast is wider this time around so he won't fit in his wheelchair he has already. (Which is ok the seat is starting to rip and the seat belt doesn't stay snug anymore.) This chair is identical to his other one, its just wider for him.

He was very spoiled today. He got a package delivered from some friends back home (Thanks to the Gleason family) they sent him a little NY Yankees figurine guy. I have never seen them but I think I see a possible new collection being started soon. It is so stinking cute. Then he got his edible arrangement from Sissy, Nonnie Mary & Papa Dave. Then a little while later he got a cookie arrangement. I have never seen these but they are so cute. (Much cuter in person the picture doesn't do it justice). He received that from his friend Ana, Mary, Joseph & Anna in North Carolina. The arrangement also came with a dozen mixed cookies in a box (chocolate chip, snickerdoodle - my favorite, and oatmeal raisin). Everyone keeps commenting on them when they walk in his room. So when he is eating he will have plenty to snack on.



Hoping tomorrow we can put him in the wheel chair and roll him around in that. His nonnie Judi, Papa Tony & sissy are coming first thing in the morning. Thanks again for all prayers and thoughts. I hope tonite he can rest as much as he did last night.

.................Surgery Day

Today was a very long day for us here in Boston. We had to be at the hospital by 7 am. Surgery was scheduled for 830. All went smooth until they told Zach he had to take his clothes off and put on their pj's. He did not like that very well and lost control at that point. From that point forward all we heard was him crying (broke my heart), him saying they were going to cut him open with a chainsaw, he was going to rip those clothes off and run out naked (would of been a site). They handed me blue "stuff" to put on in order to take him into the OR. Well he flipped out seeing me in that and said I looked hideous. I must agree with him though. LOL They are so honest sometimes. I carried him in to the OR and held him while they put him to sleep. The hardest part was laying him on the bed and walking out with him. (I can understand how parents feel when they lose a child because it felt like that)


Rob and I went to the cafe quick got some b'fast then sat in the waiting room all day. They updated every 1 1/2 hrs. Dr. Spencer decided to do the tibia rod also so surgery went from 4 hours to almost 7. This way they wouldn't have to do another surgery if it pulled back anymore also. The only problem they had was he had a lot of bleeding. So they had to do a transfusion which then caused some fluid overload from the IV. All is good though because he is urinating great, which they said usually they don't do that so fast. Thats my boy.....always aiming to please.

He is resting peacefully and has been since recovery. He has sipped some AJ, and nods his head to my questions. Hopefully this is a sign he is going to sail right through here. His favorite nurse Danielle will be here on Friday and we requested her already. She took care of him 2 years ago. He will be surprised this time around because the nurse told me she has a belly and is expecting. I can just imagine what he will say to her. His favorite aid Rob isn't here because he is in Med school. Bummer for us but great for him.

Well thats about all for today. I am off to bed since it was a long day, I was up late last night and didn't sleep well.

....................Boston day #1

Phew........what a day. We started off at the hospital at 8 am for preop appointment. Then at 10 we went to Orthopedics for a appointment there. It was there we were told Zach may not have surgery. His labs came back abnormal and his clotting factors weren't good. Which meant a couple of things: he can't have surgery because he could bleed out, or they could give him a shot of Vitamin K and redraw and hope they get better. So first they decided to just do a redraw then go from there. Well thank god because it came back ok after that. They are thinking it was a bad vial or something that caused it to come back abnormal. It was a rough morning for Zach because it was taking so long and he just wanted to get to the childrens museum. Finally we got to the museum around 1:45. We spent about 1 1/2 hr there because it was so crowded and Zach was just not up to waiting his turn for everything. Luckily we only had to pay for 1 admission instead of all 3. The hospital gave us 2 complimentary tickets.

Once we got back we sat in the tv area and met a real nice lady & her daughter. They are from Albany orginally but living in Japan d/t husband being in the air force. We chatted for many hours then went to dinner with them. Then we came back exchanged FB and showed pictures and shared some great stories & traveling experiences. It was nice to be able to talk to adults while the kids played then off to bed for Zach early.

Well I need to go get some shut eye since we have to be at the hospital at 7 am for his admission in the am. So up and at 'em early in the am. Looking forward to the in laws & Marissa coming out on Friday & Saturday. Possibly a friend of Zach's on Thursday if he is feeling better. This time around we don't feel so alone and thats a great feeling. I really like this dorm style living while we are here because the friendships we have made already are great. And to know we are not alone with having a child with some medical issues makes it a little easier too.

................Boston Bound

We are Boston bound for Zacharys surgery. So please stay tuned for updates daily over the next couple of weeks on Zachary's progress. This weekend was very busy for the little guy making his visits with grandparents, friends & neighbors. Everyone has been so supportive and wonderful to him and we want to thank everyone for making him feel so good. His anxiety levels have been really high the past couple of days but with some reassurance I have been able to get him back to his normal self. He has packed his bag with some great items to keep him busy, or feel better. He has his LIPS from Mrs. Brazee, class picture of all his friends, a magnet from his friend Sampson (golden retriever next door), some new books to read & color, some cookies (he already got into them. LOL) and his new build a bear DOG to sleep with. Our schedule this week is: Travel on Monday, 8 am & 10 am appointments on Tuesday and hopefully is the weather is cooperative on Tuesday we will take him to the childrens museum for the afternoon. Then surgery is scheduled for 830 on Wednesday. Once he is out and in his room I will update as to the exact floor he is on for anyone sending him a card. Thanks again for all the prayers and support.

.....................Almost all set

Well this week has been a busy week and we are almost through it already. Zachary had a couple appointments for clearance in order to have his surgery. Cardiologist said everything is perfect and no problems what so ever. He will not have to go back unless something terrible happens. They also don't believe the high BP is cardiac related. He thinks its kidney caused. Thank you god for some answers and no new issues. Zach is handling everything very well so far this week. Next week might be a little different but thats to be expected with what he will be going through.

Marissa finished her play she was in All Shook up. They did AWESOME. I am so proud of her because i know I could never get up on stage and do that stuff.



Rob got a call from his urologist after he had his 1 week follow up xray appointment and it wasn't good news. He said the kidney stone is still there and not changed in size. So in other words the lithotripsy did not work. So they have to go the hard way and he is not a happy camper. Dr said it can wait until we get back from Boston.

Please keep checking this site out through the next couple weeks. I will be updating daily on Zacharys status.

...............Rob and his kidney Stones

Well today Rob finally is going to take care of his Kidney Stones. He keeps getting them but just takes some pain meds a day off from work then deals with the discomfort till it goes away. Well a couple weeks he had a bad attack again and has finally decided to have them blasted. Thank god because there is nothing worse than seeing him in pain and so sick from them. They say it doesn't hurt and he will be up and going shortly after.

Zach is holding his own these days. Taking his medicine like a champ and so far the seizure activity has been kept to a bare minimum and i mean bare minimum. I think since they upped his medicine about 3 weeks ago he has had 2 episodes that I am aware of. Not sure if he has had when not with us. He has not been telling us either again and that worries me. I really want to know so we can have accurate documentation to know how active we all need to really be.

Next week is really busy for us seeing its the week before his big surgery again. He has a cardiologist appointment & eye appointment. On top of his 1st communion meeting, hair cut, and packing for almost 2 weeks.

Marissa has her play this weekend "All Shook Up" I can't wait to see it. They have been working so hard and had a great tech weekend building/painting the set. It went much faster than expected for building it. I will post some pictures once we see the show.