Wednesday, June 22, 2011

Monday June 20th, 2011 Day of Surgery

10:45am- Raiden is going to be goin in for surgery in a few hours! (at 9am we found out that im having another boy!! Due date confirmed again for Nov 5th!)

12:30pm- We walked Raiden w/dad (marks dad) to the OR. It wasnt as bas as i thought it was going to be. He was smiling at the drs. We left while still all smiles so that he wouldnt fuss. Im praying so hard that all is going well down there. Hes on the 3rd floor threw a set of doors to the left...i memorized how to get down there even tho we waited in the picu waiting room :)

Not sure the time, but there is an older gentelman sitting across from us who is snoring really loud...iv complained about family members in the past that were loud, but this guy takes the cake on noise level!! lol

2:15pm- Mark and i are passin the time by pickin out baby names. As o f 1:45 they hadnt started the surgery yet. But barb was on her way down to get info on how it was going. Once again i find myself in a position where im givinng my most heart felt prayers ever. Prayers that bring me to tears, using words i never thought i would have to. Raiden has helped me grow up so much more than i thought i could. He is also showing me strength, when i didnt think i had it.

2:47pm- waiting sucks......Cant really go anywhere. Cant wait in his room. Obviously cant spend the night...such a helpless feeling. At least i have my mark here with me. He is keeping me sain and level (tho he doesnt know it). Looking at his pic (raidens) makes me smile, used to make me want to cry, but he is such a stong boy. Smiles 98% of the walk from his room to the OR :)

3:15pm- Still waiting. Hoping we didnt miss barb, but i believe she would have called us.

4:25pm- Barb saw us but she hadnt been down to the OR quite yet. BUT she did call and so far all is going well. Still praying all goes well and hone in 8 days. I miss my son :( But knowing he has so many fans, and cheerleaders amkes my heart swell up with hope and apreciation for all those going threw this journey with mark and i. Dont think they started the surgery till 2:30, so thats probly making this waiting game that much longer. The waiting area is full of diverse families all with diffrent stroyies. One heart family had their son go threw a heart cath last week. He went home today. Im starting to understand the pain it feels to be jelous of watching families with their babies be able to go home, and yet feel mad cuz im still here waiting. I by no means wish their families ill will, its heart warming to kno that they are well enough to go home.

4:37pm- Think im starting to get dilirious from sleep deprivation. Mark got me a coffee but it only lasted like 30-45min in my system. My eyes are so heavy, they burn, they are dry,, and all the walking today has me physically exhausted. Mark disapeared, dont know where he ran off too. Funny soon as hes gone, i got mistaken for being part of a latino family LOL I swear i need to find out my true heritage!!lol

5:30pm- Just found out more sad news. 2 Children ages 7and 11yrs are up here in the ICU and PICU from a car accident. Their 9yr old sibling died in the car crash that they were all apart of :( What a sad day, to much sorrow here at the hospital. And i just watched a couple follow what looked like a crash cart with their young one on it. My prayers are deffinatly with all the families that are in here today. I feel like i should go up to them and just give them a big hug. (then again they probly look at me like i was crazy lol)

6:00pm- Raiden has been brought bact to the PICU!!!!! Thank you JAH!!! He looks awesome too for the spilt second that i saw him! Looking forward to talking with dr si and barb!! LOVE MY SON AND HIS DRS!!! When barb saw us she was so happy with how he did! So just waiting to find out how exactly everything went.

Sunday June 19th 2011

We all woke up fairly early sunday morning. The kids were in their room playing loudly, mark had just gotten out of the bed. I asked if he would call and check on ray, he did and let the nurse know that he would be in a few hours. She then asked wheather or not "MOM" was coming in at all to see him....Really Ladie??? I showed mark the "finger" and told him to tell her yes. He got off the phone and i proceeded to bitch about how dare she give that tone, I wasnt in on saturday cuz ebony was coughing and i was making sure she wasnt sick...last thing i need is having her go in and gettin ray sick. But no, that nurse just saw i wasnt there the day before and making sure i was doing the mommy thing and seeing my son...sorry i have more than one child and no babysitter. To this point i had missed only one day of raidens 3 week stay at the hospital. Mark has been there everyday and my sister has been there and was there giving me updates on saturday.
Well we leave the house round 8am to go see raiden (ebony and kai too). Round 8:25 we get a call from Dr. Si. Surgery monday! Think at that point mark touched the gas a bit more to hurry and get to the hospital.

Thursday, June 16, 2011

June 16th

Praying that my lil chunky monkey gets the breathing tube out today. Preferably before i get there. Calling right now to see how he is doing, please baby hope you had a good night. YAY he did!! Hopefully within the next 4-5hrs they will take the tube out, hope i get there after the fact lol. And they better know what bacterial infection he has!!! lol This has been such a rollercoaster, up and down... If what my heart mommies say is true its all uphill...hopefully :) he is such a strong boy. Love him so much will get pics of him once that tube is out! Thank goodness the nurses understand...to bad my sister didnt get it. She sent me a pic of him with the tube in and i broke down...really mo really!!

Tuesday, June 14, 2011

The Hospital

June 5th
          Monday Morning
12:00am ~ Stop Formula
12:00-5:30am ~ Juice/Water
5:30am ~ Stop Juice/Water
5:00am ~ Wake up/ Ray&Mark shower
6:00am ~ Leave the house
6:30am ~ Check in at the hospital

June 6th
         Raiden's Heart Cath (Monday)
5:00am ~ Up by 5:15, mark and ray in shower
5:45am ~ Double checking Diaper bag and house that all was in order
6:00am ~ On the road to hospital
6:30am ~ 'phew!' Made it to check in, insurance paper work taken care
of. Disclamer paper work taken care of. Spoke with numorous nurses and dr. vangundy.
8:00am ~ Raiden was given happy 'juice' to help him fall asleep :) My baby is so strong. (not without mark makin both ray and i gag) I even got raiden's medicine song stuck in one of the nurses heads LOL
8:15am ~ Mark carried ray (w/me folloing of course) to the cath lab. THere we left him so dr vangundyand his team can do their work, check his heart, see when he will need his next stage of surgery (the glenn).
8:30am ~ "social security called"
8:30am ~ Hospital food has come a long way in the last few years....Not the resturant quality id enjoy, but food non the less. I ordered a suasage, bell pepper, onion and cheese omlett...good but i soooo could have had better. It was accompanied by "house potatos". That should have been my warning right there! LOL Good thing i was eating, Ray's nurse walked in and told mark good job for making me eat! Silly nurse i was dragging him to the cafateria!
9:32am ~ Ray has been back there for a hour now. All we can do is wait now.
10:00am ~ Checked on rays timming (i got hungry) he has 20-30 minutes left.
10:30am ~ Back in the waiting room for raiden, ate the most awesome tuna salad sandwich!!! Probly cusz im prego, but whatever it was sooo good. Hope my little boy is being strong an as far as his condition goes he is in perfect order and perfect candidate for his next surgerie.
11:15am ~ Still no word from dr vangundy. HOpe and praying everything is going well. This waiting is driving me crazy. 'sigh' Didnt realize how long it was going to take, and how emotional i was going to be. I can barely look at his picture without tearing up. Thinkin of all the moms who had to go threw the surgeries, and loose their little babies. Its not fair that this happend. Its not fair that mothers (and fathers) have to have their worlds crumble without any way to help prevent, or cure for that matter.
11:27am ~ Over heard the receptionist....ray is still in :( Hope and praying everything is ok!
11:35am ~ Iv seen like 5 dr's(nurses) leave the cath lab yet no word on ray. "NO ONE IS ALLOWED TO LEAVE UNLESS IM UPDATED!!!" LOL I said that to mark as another nurse leaves. He leaned forward and said, "Guess they didnt get that memo."
11:35am ~ Ray is BACK!!! All went great. He needed to have 6 coils put in (3 on each side). Un-nessisary blood flow is what its to prevent. We have such a strong boy!
12:15pm ~ Salad for lunch, and i walk back in to rays area and there he is crying like crazy. Not only does he have 2 bottom teeth coming in, and he hasnt eaten since 11pm last night, he has just had all the work done on his cath. Aparently, with having the 6 coils his sats are going to lower. With him throwing the fit like he did that dropped them a lot. Dr vangundy was there the whole time, and tho that worried me, im so glad that he was there made me feel a little better. My thoughts are...he is hungry. Plain and simple. Sure he's going to need to be re-checked to make sure nothing was irritated while in for his cath. Mark feels the same and is pissed that they waited so long and now ray wants food, solid or formula, and he cant have any of that u til he is stable for a while. Dr vangundy saw it nessisary to give ray more pain meds.
4:50pm ~ Goodness, ray is in the PICU again! :) Love it up here. Ate a
slice of cheese pizza for lunch.

June 7th
            Raiden's hospital Stay (Tuesday)
7:05am ~ Sooooo at 11pm last night raiden needed his blood drawn again, no problem right, WRONG. She wanted to put an iv in so his blood draws would be easier. To bad they poked him for a hour and a half with no luck. And becuase i was irritated about it, i wasnt to pleasent with them when I finally calmed him down. Then his nurse "karen" (finnally got her name) started tellin me i needed to write down how much i was feeding him. That alone didnt bother me, what bothered me was the tone in which she was using, then her aditude goes from bossy to condensending. I hate fae smiles and when people smile at you cuz they think they are getting their way and are getting away with it. I wanted to slap the crap out of her. From 11pm-12:00am the caffateria is open to get food. They closed at 11pm last night so i didnt eat. Round 1:30am (after all that happend with raiden at 11) i find out that
she went to eat.
9:30am ~ (7:30am)Surgery (glenn) Raiden!! Ebony and kai will stay with sophie until friday. Morgan will need to pic them up then and keep them friday night, sat, and sunday night. TOnight im going home with mark so i can get a good nights sleep. Pic up raidens scale and puls ox machine. HAVE to clean the living room (i'll let mark clean the kitchen) Must clean our room, clothes put away.Need to sort rays clothes he is in 6-9 onsies a 9month on full body outfits. Seriously hope im having a boy so that we dont have to buy new clothes.

1:30pm ~ Conversation with Barb ~
Thursday june 9th 2011 at 7:30am Raiden LaRoy Hartley will undergo his glenn surgery at the age of 7months 2 weeks old! Wednesday evening he may have formula and solids until 1am thursday morning. From 1am-4:30am he can have clear liquids. Bring in scale and pulse ox machine and make sure barb gets them. I keep the binder! 4:00pm ~ At 12pm today i got to eat lunch with morgan.Spagetti and Turkey meat balls... she doesnt eat red meat anymore.. (i roll my eyes at that) I couldnt not eat the red meat! Bout 3pmish, raiden was being a lil extra fussy (and he finally pooped after 3 days). So the nurse thought "imma give him tylenol" not a bad idea, but she gave it to him to fast. End result, a puking raiden with a gagging mommie equaling a laughing nurse. We finnally calmed him down and is now sleeping, but he has gone threw so much! :( My poor baby. Spoke to mom and she is going to try and see about coming out soon because of raiden. Im praying ray will be able to come home end of next week! :) so tonight i will be going home just so i can get some sleep and mark and i can clean up the house tomorrow. I want everything to be perdfect for ray and the kids when they get home. That an mom and dad will be coming ouver and we need the place clean!
7:20pm ~ Raiden gota a sapository round 5pm. He made a poopy diaper a hour to a hour and a half later. I feel so bad for him, his poor tummy was rock hard. I am deffinatly going to need the rest tonight, looking forward to cleaning up the house then getting back here to be with ray. My mind is at ease knowing tomorrow there is just one more day to his surgery.

June 8th 2011
            Eve of Raiden's Glenn (wednesday)
7:33pm ~ I slept sooo good last night! Passed out probly round 9:30pm, woke up once to pee then woke up round 7:30am! Mark cleaned the kitchen and we put together the kids beds as bunk beds again. (ebony is banned from her room!) Cant enfisise how i cant wait to find out what im having, so ready to decorate their rooms! :) We got to the hospital at 1:30pm. The volenteer had just put him to sleep! LOL well mark didnt care he wanted to hold his son! :) I brought his mini gorilla pillow pet, his elephant and mark bought him this awesome singing dog! It has the cutest songs on it. 10 more hours to go! 7:15am he will be taken down for surgery. Cant believe its here already! And we found out he has had the fastest
recovrey rate fo the norwood in UC Davis history, 2 weeks!!! They are very confident about tomorrow! Which makes me feel a lot better. Mark tho im a little worried about, dont want him hurtin himself :)

June 9th 2011
                    Day of Raiden's Surgery!! 
6:50am ~ (6:15am) Dr si was looking over ray. He may have a respitory infection. By going into surgery with it can massivly effect his recovery or even take his life. At 6:20am his nurse took a nasal swab. Hopefully we will know bu this afternoon if not later this morning what the results are from that. If he does have an infection his surgery will be postponed for a few weeks. If he doesnt have a infection hopefully just days. Its another waiting game, but im glad they are taking every precaution cuz ill be damed if they dont. The drs are talking now, hope all goes well.
7:10am ~ Drs are doing their rounds. Overheard them say if labs come back ok, they will schedule him for next week. If he is sick it will be longer. I hope all is fine cuz i dont know if i can leave him or ebony and kai for weeks.

June 10th 2011
                   Day after Raiden was to have surgery
6:20am ~ Yesterday wasnt horrible. At 6:30ish dr si came in saying ray might be sick, but told us about the surgery. Raiden was put under isolation for fear he is sick/others getting or getting him sick. We are still waiting on the result. He was teken off oxygen at 6:15am and right now at 6:30 his sats are 76! Thats so awesome! He is sleeping tho LOL Mark and i left yesterday at 12:45pm. I needed food and more sleep. It was great or reasuring to know that a volenteer was going to be in to play with him after we left. We boughinception and tho mark fell asleep threw most of it, i thought it was really good. We have to wait on his labs but ray is probly going to have his surgery.
6:36am ~ Raiden is still sleeping peacfully. I need to talk to barb about needing more asprin and more enalpril. Its been sitting in his diaper bag since MOnday. Praying that all is well and his surgery will be rescheduled for mondayor tuesday. Im so ready for this to be over but so glad he is being kept well (tho they got him sick if he is). Cant believe3 we got here at 4:15am, sooo early. Mark had to go to work and will be back between 5pm and 6pm tonight. I need to leave at 2pm to get sphie groceries and pic up
the kids. Think i will get stuff for fajitas or tacos for dinner, tacos! 6:50am ~ Dr si has been out by the nurses station for 30 min now. Hope he has good news for me, or some news for that matter. Raiden fell asleep about 6:20am its 6:57 and hes still sleep! yay Ray! Hopeing he can stay sleep, he needs his rest. Sats at 72%. Dont know what they are going to say...hope all goes well.

Sunday, June 5, 2011

June 5th, calm before the storm?

Tomorrow Raiden goes in for his Heart Cath. Dropping the kids off at a friends tonight we have to be at the hospital at 6:30 to check him in. 8:30am is when they will taking him in and starting the cath. He has the most awesome nurse, she is going to try and get him in friday for his next surgery (the Glenn). Things are moving sooo fast, im 18 weeks pregnant, raiden is going to be 8months this month, ebony and kai will be going to a new school in 4 weeks.....they are all growing up so fast.
Sooo much stress im glad that i have friends that have been there for me when times had gotten just sooo stressfull. Even people that dont know me personaly but have or had children with the same or smillar condition as ray have reached out to me, and that has deffinatly been encouraging. Hoping all will go well and that there are no complications, praying sooo hard over this. I know iv been stressing myself out to much on this new baby and i need to calm down so that i dont hurt it or myself. Looking forward to my 2 ultrasounds in 2 weeks :D cant wait to find out what we are having!!!