One of my good friends Claire on my August 08 boards on NBBC really suprised me this week. She asked all of our friends on that and my down syndrome board to see if we could raise a fund for us to go stay with TJ in Loma Linda.What she didn't know at the time was that our electricity was about to be shut off (we didn't have a huge shut off bill, but it wasn't something we could pay) not only that but we weren't gonna be able to visit TJ until DH got paid for at least 1 1/2 weeks because we couldn't afford gas either........ So I jumped on to read posts and see this post on NBBC : Help for TJ or something like that. She got about 4 or so pages of responses from the different women on the board. I was so suprised I started crying. About that time I checked my personal messages and they were asking if I had paypal, so I called DH and asked him and turns out he had one! It was originally set up for his online game Guild Wars, but he hadn't authenticated his card or bank account yet.So I go on there and take the steps to authenticate it, only to find out it still takes like 2-3 days and then another 2-3 days to get the money transferred.... By the time it was all arranged.... They had donated at least enough for me to pay our nearly $1000 electric cut off notice so that we could keep power at our house for the rest of my family (my mom, brothers sister and family friend) and also give us gas to get up to loma linda and pay for us to get some food while we are there too!!! We are still pretty far behind on bills, Due to a mix up with the cell phone company (my mom had a payment arrangement that they messed up) our cell phones have gotten cut off. (we still owe a couple hundred dollars but that can wait)DH and I are still stunned at the generosity that everyone has shown us! he just sat there today reading everyones kind words and staring..... shaking his head.... Youd think with all the stupid scams that are out there that people would be so cautious that they'd be less willing to help... but they weren't. IDK, maybe it's because these women are like family to me... or maybe because they view TJ as one of their own??? In any way.... It's great.
IF anyone reading this blog knows of any reasources to help us out With not only utilities but regular bills like the car, gas, phone bills... etc. in the Hemet, Socal Area please either Email me at:
beauty3551@yahoo.com myspace me: myspace.com/martikadragoon martikadragoon@msn.com or Dh at (carlos) championbeowolf@yahoo.com
Family... From Left (Brian Family friend), Carlos(DH), Jon(middle bro), Mike(youngest bro), James(Oldest of younger bro's) and the other guy I don't know....
Our Sugar Glider TWEAK! (like a flying squirrel...)
TJ again 9 days old!
ME approx 4 mo. PP With my favorite Corset Jacquard!
TJ at 9 days old in the NICUThursday, December 11, 2008
TJ on Ventilator Category: Life
Well, as of last night TJ is on a ventilator, it is helping him to breathe without making his lungs have to expand and him work so hard for each little breath. There was a pastor in the waiting room today who happened to be from a babtist church and he was there to pray for a family there who happened to have a 2 yr old grandson in the hospital. I prayed with them even tho it was in spanish and I don't understand crap.Then I asked him if him and his wife would come pray for TJ also. So they came in and prayed for him and ever since then I've felt so much better. They also told me that TJ's HBO treatments are over so he can keep greased up to keep his skin soft. They only allowed me 15 min. each hour to visit him while on vent because it's policy. but I got to see him, kiss him, and hold his hand. :)
I'm feeling a bit better today.
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Wednesday, December 10, 2008
TJ on CPAP Current mood: anxious
I just got off the phone w/the nurse and they're trying to stabalizing him. He is breathing badly and they put him on CPAP. His swelling is more nad his skin is more threre........
I wish I could afford to go see him every day but I can't.
My heart is breaking open right now.
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Update on TJ... Dr’s are doing all they can for him. Please pray Current mood: sad Category: Life
Tyler REALLY needs prayer right now. This is how things are going right now. The Wound VAC is pulling out more and more fluids every day, his body is swollen up and he has begun to blister up all over and it looks like infections are setting in on his skin. EVEN Tho he is on several antibiotics to prevent infection.
They have tried several types of closures on his chest including inert metal wires, (for the bones, actually cartilage, not bone) A special Plastic, and 2 other types I can't remember. He is definitely not getting any better, but they're not too sure if he's getting any worse. They can't do much for his skin so it's just getting worse even tho we are trying to get the contact with his dermatologist who knows us and knows how to treat his skin instead of just the derm. On call there at the hospital.
His chest bone isn't even bone, it's cartilage and the doctor (who happens to be one of the best and has been working for about 30 or more years on stuff like this) says that since cartilage has no blood flow the best we can do is hope and pray that something works and soon.
They got really ticked off at me because today since they weren't taking care of his skin, he had a HUGE blister covering his entire palm and about ½ inch above the palm where it was fluid filled. I waited til the nurse was out, Used gloves and a sterilized needle (I know where they kept them) and popped it, then applied gauze to soak up the fluid, and got triple antibiotic ointment and applied a tiny bit, more gauze and some wrapping to it. They got really ticked off that I took it into my own hands to the point where they locked the drawer that had the needles in it! They basically said without saying it straight up that if I did it again they'd kick me out of the room.
Since we can't get ahold of the derm. Who knows our case, they won't do ANYTHING To treat the blisters all over his body leading him to have more pain and possibly get infected if they burst on their own rather than lance them in a controlled way and not allow the fluid inside to get all over and spread infection.
Dr. Razzouk said he has NEVER, EVER Seen a case like Tyler's, not only with the skin problem but even a case where NOTHING worked to close the bones/cartilage, even in a baby since his specialty has always been pediatric cardiatric surgery. He's been a cardiothoracic surgeon for like 40 years!
I keep thinking god didn't put him here to just take him away from us, and I know he's fighting every day, but to me he seems to just be getting weaker and weaker, and they said he'll be there for at least a month maybe two til the cartilage grows together enough for them to close the wound up, but cartilage has no blood flow so we just wait. .
They had his file on a table right by his room, and when the nurse wasn't watching I read a few pages, basically it was a summary of what cardiology was suggesting be done. They suggested an echo be done to see if there were any vegetative growths on the heart. (where bacteria had grown on the ventricals or walls which could either cause more surgery or a heart transplant be done) as well as DVT (blood clot ) checks on both arms and legs. They weren't even mentioning any of it until I asked (while they were doing the echo) if they were looking for growths, and if they had thought of DVT's due to all the swelling….. I'm so ticked off that they aren't keeping me up to date on EVERY step of things, and this is the best hospital in this side of the country so I have no other choice. The only good news is his weight is up. His dr. told me they could make me copies of all his filework and then the nurse says "no we can't it's against policy" so I get NOTHING. And then they tell me to go off site to another place that has medical records and CHARGES MONEY which we don't have.. And they're records are not up to date, they can't be. I want records from each day.
I got to hold him for a few minutes before the echocardiogram, but that was the ONLY Time all day. I've cried so much today out of desparation. And all the nurses were being jerks. TJ's teacher came by to visit him and even she saw that the nurse in the room (not his but one watchin him since his nurse was watching a baby in another room for a while) was being rude in response to my simple questions.
I'm afraid he'll get a huge skin infection that'll lead to something systemic and he won't make it. All I can do is pray for him.
Cindie
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Monday, November 24, 2008
BRAG for TJ! He learned how to play today!! and I got a pic! Current mood: tired Category: Life
We've been trying to get TJ interested in toys. He's 3mo 1 week old now, but adjusted age would be just over 2 mo old. He hasn't shown much interest in toys and just since his teacher came the first time (she's coming again tomorrow) we've been working with rings and stuff he can grasp. He hadn't learned to unclench his hands yet. well, today he did, and The toy he's holding has a plush zebra head on it that he kept trying to fit in his mouth. He got SOOOO excited, he was shaking it back and forth towards and away from his head with his mouth wide open! and he wasn't laughing or smiling but you could just tell he was so happy to realize he could play with it and at least somewhat control it. Check out my new pic to see it! it's so cute even tho you can't see his face. lol
Cindie
08-11-2008 - TJ\'s Open Heart Surgery!
My mood while writing this blog:Happy!
We're back!!!!! TJ had his surgery on Tuesday 11/4, and came home today, Friday!
He's doing AWESOME! SOOOOO different! The first day they let me (carlos had to work) feed him, yesterday... instead of taking like 30 min. for 2 oz he downed it in about 5 min!!!!!!!!!!!!!!!!
They took his NG tube out for good last night, and have him on some supplamental oxygen right now simply to prevent Pulminary Hypertension. He's on 1/4 liter, which is GREAT. The doctors only wanted his SATs to be at 85-95 but they've been at 95-100%!~
I cried when I saw how well he ate and how well he's been breathing! and they said it would just get better. He doesn't gasp for air anymore hardly at all!
His wounds are healing GREAT and very fast as I knew they would. I don't have any new info on his weight. last I heard he was 3.5 kilos or around there.
Turns out the hole in the bottom of his heart (VSD) was SO large that the doctor was shocked he was able to have energy to eat ANYTHING by mouth or even be awake for more than a few minutes at time. He said in an adult it would've caused problems!~
He also had the 2 small ASD's which I was suprised to hear. but they patched it all up.... I'm so happy he's home!!
30-10-2008 - NEWS: Tyler got scheduled for his OHS (open heart surgery!)
My mood while writing this blog:Happy!
Hi all! We went to TJ's appointment today with the surgeon who's going to be doing his OHS or Open heart Surgery for his VSD. Again, common with down syndrome.
He said that he thinks it's time because A) TJ is going into congestive heart failure (arent they always?)
and B) Failure to thrive. He's lost 4 oz as of now.
so They set it for this upcoming TUESDAY: November 4th!! AHHHHH. lol, it's kind of nervwracking.
He said that he's going to use subcutaneous sutures on tj (under the skin) to close him instead of staples, just like they did with my csection.
and that he expects him to be in the hospital for about 2-5days.
I'll be staying at the ronald McDonald house for several days until he comes home (Loma Linda is an hour away)
I'm REALLY excited! And DH's days off next week fall on Mon. and Tues, the preop appointment and surgery days. YAY! so he doesn't have to take time off work or anything.
He also told me that the death rate is only about %1 for this surgery!
Unfortunately TJ can't have his hearing screen yet because CCS's preauthorization expired.. darn it. So they've got to get a new one.
He had his RSV shot 3 days ago so we are on track with all vaccinations and everything. The goal now is to not let him get sick over this next week.
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Friday, October 17, 2008
New updates on TJ, Carlos and I Category: Life
Well, TJ had his 2 month appointment, physical, and shots today. Poor guy.
He's got chicken legs so those big ol needles must've hurt him bad! he screamed quite a bit. he had to get 3 shots. As of today at just over 2 months old he weighs 7lbs 8oz and is 19 in. long! that's up from 5lb5oz 18 inches at birth!
He was pretty sick early on in the week and kept me up screaming . I finally fell asleep with him facing me still crying and screaming. and I woke up to my brother in there trying to calm him down. (I was sleeping in the nursery so that hubby could get some sleep since he had to be up at 6am)
Tomorrow we're going to the pound to look for a pit bull puppy, a female. We want one for TJ and we're not worried about the breed. If you know us you knwo we've got a Rotty that's over 100lbs! she's a complete sweetheart!
Tyler has begun making a few noises and giving us a fleeting smile here and there. The doctors do think he's deaf or hard of hearing because he failed 2 newborn hearing screens in the hospital before discharge. We find out at the end of the month at his more comprehensive hearing test. tho we don't wish it on him it's not a problem if he is hard of hearing or deaf since I sign quite fluently. (SEE sign not ASL) and hubby is learning some. So far we are trying to teach TJ Mamma, and Daddy... alot of other words too. We expect him to pick up and sign his first word at 6 months, hearing or no. Babies learn to sign more quickly than they can talk.
Also today at the doctors I weighed myself and I'm now 2 lbs below prepreg. weight and still losing! YAY! hubby and my brother have been working out quite a bit and he has put on several pounds of muscle which he looks great!
The day after bringing TJ home I fell on the stairs (by myself) on my back and hit the middle of my back quite hard. I got xrays a week later when intense pain began and found out that I have, a) Scoliosis,
B) Arthritis (CMON!! I'm 21 yrs old!)
C) Weakened bones/disks!!!!!
Can you believe it? My back has been hurting so bad. I'm living on Tylenol, IBuprofen, Heat patches and ICYhot.......
Well, that's it for now! hubby and I's birthdays are next month! I'll be 22 and so will he!
To my friends, give me a call if you want to hang out! I don't think I've got any plans on my birthday (Saturday Nov. 15th!) and i'd love to do something...
Message me for my number if you don't have it!
04-9-2008 - PPD and Tyler and me
My mood while writing this blog:Sad
Well, we couldn't see tj today due to moving. I had literally 5 big guys (size 5'11- 6'5) helping and I just packed boxes and let them carry anything even remotely heavy I also did the driving. We managed to get a uhaul but had to ask my grandpa for a little money for help til we get help. Tomorrow we find out if the woman here at one of our local churches is able to help us with rent (shes asking her boss at the charity for $1000 even tho we owe $800) and she's giving us a food voucher check for $150.. which is greatly appreciated. neither we nor my mom have any food really at this time.
well.. regarding Tyler... Today his nurse called me. They did a test on his thyroid to check his hormone levels. it's not something they typicaly do at normal hospitals but they do it standard at Loma Linda since the have a lot of downs babies.
Well... his levels are LOW so Hypothyroidism. she said that he wont go home in the next few days til he sees an Endocrinologist doctor and gets his levels corrected with oral meds. she said they'll get him off any meds over this next week but she did say it'll be at least 1 week til she sees him coming home.
She also said that if he STILL isn't eating well (could also be caused by the hypothyroidism) that they WILL send him home on Corpak or a feeding tube thru the nose. Which is great cause they're not gonna push a gtube insertion!
I'm sad that he's not coming home cause he'll be 1mo old by the time he comes home. HOWEVER this is really giving us time to get moved and settled.... I've been pretty sad lately and my OBGYN told me if I don't feel better at tbe 4 week mark then to call so they can get me on antidepressants. my mom thinks I do have PPD because when I REALLY think about it, the only things making me happy these last few days are TJ and hubby even tho my family is here for me. I just can't really cheer up. I knew I was at risk for PPD because I delt with depression as a teen. I'm not feeling suicidal or anything. just blue.......
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Monday, August 18, 2008
Tyler James Hamilton Is HERE!!! Current mood: TIRED, HAPPY, and PROUD Category: TIRED, HAPPY, and PROUD Life
Hey, Sorry I haven't been on in a few days. I have big news!!
UPDATE: Tyler James Hamilton was delivered Via Csection on Aug 14, at 4:44pm weighing 5lbs5oz At Loma Linda Hospital. I was 35w5d pregnant. My doctors decided to deliver him after my normal appointment ultrasound showed Ogliohydramnios or NO or Little Fluid. He was also at that time diagnosed with a rather large VSD or hole in his heart due to the DOWN SYNDROME. He also has a tiny ASD which they expect to close soon. The VSD will require surgery at 4-6 months of age as long as he's strong enough and they'll watch him closely for heart failure and things like that til then. Funny thing is I did get to experience real contractions. My U/S lasted ½ hr or so, and she pushed REAL hard on my stomach w/the wand.. By the time I was in L&D waiting til my surgery time (set as STAT Csection not really emergency) I begun contracting every 3-4min… boy did they hurt and I was happy to have my Spinal!
Upon delivery, the doctors and nurses had carefully greased up they're gloves and his bedding in preparation for his fragile skin. He had some tears and rips where the skin had been abraded in utero and thru the birth itself. But most of the tearing came after birth during his first few hrs of life. This due to the skin problem (EHK) (if you need to know more read my other blogs!)
He was breathing room air w/the occasional blast of oxygen. Originally they wrapped his wounds with nonstick pads and COBAN or the kind of bandage they use when you give blood.. It comes in pretty colors and sticks to itself. Well we realized it was tearing his skin and I came up w/the idea of using the bandaging they put on burn victims. It looks like netting, with the nonstick pad underneath and aquafor on his skin.
As of today his skin is healed up and is beginning to peel some. He hasn't been eating well and has been de stating due to not breathing regularly (he breathes quickly). They said it's because of his heart and also the fact he's a preemie. He is ABSOLUTELY Beautiful. He's got the pretties dark blue eyes and cupid mouth. And he's got big feet with long toes like his daddy! He is also a very peaceful baby and very quiet. He only cries if A) he's in pain (that's been done since his 2nd day when he began healing up well) B) he's hungry or C) he's wet or poopy. Other than that he's content to sleep. He's not been eating well due to not having a good suck/swallow reflex. He'll usually eat anywhere between 2-25cc's of formula or breast milk. He eats a few one feeding and a bunch the next but they want him eating 30+cc's at EVERY feeding.
They've got him on antibiotics IV for 7 days and have an umbilical catheter in so they can give him things like his IV nutrition and any meds. He will be in the hospital at least til Friday and will only come home if he has, NO infection. Can eat well, gains weight and has NO de stats.
As for me I'm doing rather well, they've still got me on pain meds for my incision. They did a GREAT job on it, double layer stitching as well as stitches below the skin so no staples or outside stitching. (I think they applied a little glue too) I have been up walking around since 9am the day after my surgery, to the point the nurses made me lay down for a while cause I was up and about too much. I had been visiting the NICU between 4-6X a day for about 1-3hrs at a time.
I've been pumping since day 1. The hospital provided a Madela breast pump the good kind (yellow one not blue) and I used it while admitted. Tomorrow I go by WIC to pick up a WIC pump (as good as madela) My milk has just begun to come in today and I'm SORE. I had to begin massaging applying heat packs before pumping and ice afterwards, but I'm now finally getting about 5cc's from each side at a time and it's slowly increasing.The nurses and doctors have all been wonderful to us so the other day I had DH (hubby) go buy a thing of homemade style cookies for both the NICU staff and Maternity staff. They really liked them. Daddy is EXTREMELY happy to have his little boy here and both grandma's are proud. Even tho dh's mom wasn't happy w/the pregnancy and whole thing at first (she never really liked me) as soon as she saw TJ and I offered to let her hold him she teared up (tho she claimed she wasn't!)
The doctors and nurses designated me the "RESIDENT PROFESSIONAL" regarding his skin problem so I've had the sole charge of caring for his dressings and educationg anyone who doesn't know about it. Well, that's about it. Tomorrow we'll be staying at the Ronald McDonald house probably for the remainder of the week and maybe longer. If they have internet there I'll be on updating everyone on his status!
Cindie
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Friday, July 25, 2008
Updates on me and TJ! Current mood: tired
I really, REALLY pushed it too far today. I went out and spent too much time in the heat. Basically my hand's are swollen up so much I can't fit my ring on and my legs are swollen too. I've been having BH contractions for the last 2 hrs, but I'm not having enough to time them. I do know I've literally had like 5 bottles of cold water today so it's not a hydration issue.
Today tho I had my OBGYN appointment and in 2 weeks I'm having another U/S to make sure he measures right, then on Sep. 2 he's having me have my amnio, and if it comes up good that his lungs are mature, then I get to have my Csection on Wed. September 3!! YAY!
The doctor is kind of frustrated w/me not being able to eat enough. For example I only managed 1 meal yesterday and wound up eating too much and got sick last night. Dr. Block told me that I need to eat when I can what I can no matter what it is, even if it's kind of junk food. (French fries) SO I guess I've gotta try my best to eat more.
More....
Friday, January 18, 2008
Alright, well I just had my other ultrasound, at 5 weeks 6 days, and guess what? I SAW THE HEARTBEAT!! my mom and hubby was there, and we were all excited. I saw it before the doctor did, and asked "what's that? " then he said, "that's the heartbeat!!! I was so happy. He's said that it's viable and wants to see me in a month @ 10 weeks
Friday, January 11, 2008
My first appointment! Current mood: froggy
Ok, I'm officially 4 weeks pregnant. I got all my exams done and the doctor said I look fine. He did have them draw like 8 Vials of BLOOD. UGH!~ I feel like a pin cushin, haha.
But he did a sonogram, unfortunately it's too early to see the sac. So he can't tell me if it's a Viable pregnancy. Meaning he can't say if it'll survive. BUT I do go back next friday for another ultrasound. He's hoping to see the Fetal poles and a heart beat! So HOPEFULLY things work out fine. And OMG I know it's TMI but I gotta pee every 2 hrs! UGHHHHH
Thursday, January 10, 2008
woo Current mood: awake
Ok, well I got my results back, obviously positive.
But when I called my OBGYN about my HCG levels 125 as of tuesday(pregnancy hormone in the blood) they asked me to come in tomorrow to get another test, The doctor there thinks the levels may be low And just wants to check me out to make sure everything is healthy. Normally the levels are supposed to double every 2-3 days.
More later.
Tuesday, January 08, 2008
I am really pregnant? Wow! Current mood: nauseated Category: Pregnant.. Nauseaus (a little) Life
Well it's 1/8 and yesterday I found out I was pregnant! it actually made me really happy. Having nothing to do with stupid carlos cheating. lol
Of course I DON'T see this as "now he'll have to stay with me, or this'll make us closer" but that's ok. because even if something crazy happened and he decided to leave me, I'd be ok.
I had 2 positive pregnancy tests, EPT's. And of course I checked them in the correct amt of time. lol The first things I did were call my dad and best friend. Then posted on myspace and changed everything up.
My friend sasha helped me set up my kitchen table with baby stuff so that Carlos would know. I had a note that said "daddy" on the front, I won't say what it said inside, because it was very personal.
When he got home I was posting pic's on myspace for the beginnings of my pregnancy album. He asked what I was doing and didn't even look over at the kitchen table for a few sec. When he did he said " Oh god! My life is over"
And sat down on the couch w/his head in his hands. Since we weren't trying for a baby he was a little shocked, BUT I wasn't on BC either so he did know it could happen. lol
Now he's being happier about it. He even rubbed my belly, and altho I told him "I'm not even showing yet, you can't feel the baby" he responded, "well I can imagine can't I?"
I think that's my clue that he's getting used to the idea. I go to get my blood test today, and then set up a dr's apptmnt. WOO
And then I went to my mom's as she didn't know yet. The way I told her was to actually give her the EPT's since she would ask "are you sure" otherwise. haha I also gave her a note that said Grandma on the front.
She at first looked at me and said "Grandma sent this?" And I told her "NOOO, look closer at what you have" then she realized they were pregnancy tests, got all quiet, then asked "is this for real?" then she said congrats and started crying.
Later my bro's got home and I told all them. My youngest bro Mikey was FREAKING out happy because he's been wanting to be an uncle for a while. he started jumping around saying YES YES I'M GONNA BE AN UNCLE haha, He's insisting that we have a boy for some reason.
Ohhhh, And we are hoping for a GIRL!
TJ on Ventilator Category: Life
Well, as of last night TJ is on a ventilator, it is helping him to breathe without making his lungs have to expand and him work so hard for each little breath. There was a pastor in the waiting room today who happened to be from a babtist church and he was there to pray for a family there who happened to have a 2 yr old grandson in the hospital. I prayed with them even tho it was in spanish and I don't understand crap.Then I asked him if him and his wife would come pray for TJ also. So they came in and prayed for him and ever since then I've felt so much better. They also told me that TJ's HBO treatments are over so he can keep greased up to keep his skin soft. They only allowed me 15 min. each hour to visit him while on vent because it's policy. but I got to see him, kiss him, and hold his hand. :)
I'm feeling a bit better today.
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Wednesday, December 10, 2008
TJ on CPAP Current mood: anxious
I just got off the phone w/the nurse and they're trying to stabalizing him. He is breathing badly and they put him on CPAP. His swelling is more nad his skin is more threre........
I wish I could afford to go see him every day but I can't.
My heart is breaking open right now.
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Update on TJ... Dr’s are doing all they can for him. Please pray Current mood: sad Category: Life
Tyler REALLY needs prayer right now. This is how things are going right now. The Wound VAC is pulling out more and more fluids every day, his body is swollen up and he has begun to blister up all over and it looks like infections are setting in on his skin. EVEN Tho he is on several antibiotics to prevent infection.
They have tried several types of closures on his chest including inert metal wires, (for the bones, actually cartilage, not bone) A special Plastic, and 2 other types I can't remember. He is definitely not getting any better, but they're not too sure if he's getting any worse. They can't do much for his skin so it's just getting worse even tho we are trying to get the contact with his dermatologist who knows us and knows how to treat his skin instead of just the derm. On call there at the hospital.
His chest bone isn't even bone, it's cartilage and the doctor (who happens to be one of the best and has been working for about 30 or more years on stuff like this) says that since cartilage has no blood flow the best we can do is hope and pray that something works and soon.
They got really ticked off at me because today since they weren't taking care of his skin, he had a HUGE blister covering his entire palm and about ½ inch above the palm where it was fluid filled. I waited til the nurse was out, Used gloves and a sterilized needle (I know where they kept them) and popped it, then applied gauze to soak up the fluid, and got triple antibiotic ointment and applied a tiny bit, more gauze and some wrapping to it. They got really ticked off that I took it into my own hands to the point where they locked the drawer that had the needles in it! They basically said without saying it straight up that if I did it again they'd kick me out of the room.
Since we can't get ahold of the derm. Who knows our case, they won't do ANYTHING To treat the blisters all over his body leading him to have more pain and possibly get infected if they burst on their own rather than lance them in a controlled way and not allow the fluid inside to get all over and spread infection.
Dr. Razzouk said he has NEVER, EVER Seen a case like Tyler's, not only with the skin problem but even a case where NOTHING worked to close the bones/cartilage, even in a baby since his specialty has always been pediatric cardiatric surgery. He's been a cardiothoracic surgeon for like 40 years!
I keep thinking god didn't put him here to just take him away from us, and I know he's fighting every day, but to me he seems to just be getting weaker and weaker, and they said he'll be there for at least a month maybe two til the cartilage grows together enough for them to close the wound up, but cartilage has no blood flow so we just wait. .
They had his file on a table right by his room, and when the nurse wasn't watching I read a few pages, basically it was a summary of what cardiology was suggesting be done. They suggested an echo be done to see if there were any vegetative growths on the heart. (where bacteria had grown on the ventricals or walls which could either cause more surgery or a heart transplant be done) as well as DVT (blood clot ) checks on both arms and legs. They weren't even mentioning any of it until I asked (while they were doing the echo) if they were looking for growths, and if they had thought of DVT's due to all the swelling….. I'm so ticked off that they aren't keeping me up to date on EVERY step of things, and this is the best hospital in this side of the country so I have no other choice. The only good news is his weight is up. His dr. told me they could make me copies of all his filework and then the nurse says "no we can't it's against policy" so I get NOTHING. And then they tell me to go off site to another place that has medical records and CHARGES MONEY which we don't have.. And they're records are not up to date, they can't be. I want records from each day.
I got to hold him for a few minutes before the echocardiogram, but that was the ONLY Time all day. I've cried so much today out of desparation. And all the nurses were being jerks. TJ's teacher came by to visit him and even she saw that the nurse in the room (not his but one watchin him since his nurse was watching a baby in another room for a while) was being rude in response to my simple questions.
I'm afraid he'll get a huge skin infection that'll lead to something systemic and he won't make it. All I can do is pray for him.
Cindie
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Monday, November 24, 2008
BRAG for TJ! He learned how to play today!! and I got a pic! Current mood: tired Category: Life
We've been trying to get TJ interested in toys. He's 3mo 1 week old now, but adjusted age would be just over 2 mo old. He hasn't shown much interest in toys and just since his teacher came the first time (she's coming again tomorrow) we've been working with rings and stuff he can grasp. He hadn't learned to unclench his hands yet. well, today he did, and The toy he's holding has a plush zebra head on it that he kept trying to fit in his mouth. He got SOOOO excited, he was shaking it back and forth towards and away from his head with his mouth wide open! and he wasn't laughing or smiling but you could just tell he was so happy to realize he could play with it and at least somewhat control it. Check out my new pic to see it! it's so cute even tho you can't see his face. lol
Cindie
08-11-2008 - TJ\'s Open Heart Surgery!
My mood while writing this blog:Happy!
We're back!!!!! TJ had his surgery on Tuesday 11/4, and came home today, Friday!
He's doing AWESOME! SOOOOO different! The first day they let me (carlos had to work) feed him, yesterday... instead of taking like 30 min. for 2 oz he downed it in about 5 min!!!!!!!!!!!!!!!!
They took his NG tube out for good last night, and have him on some supplamental oxygen right now simply to prevent Pulminary Hypertension. He's on 1/4 liter, which is GREAT. The doctors only wanted his SATs to be at 85-95 but they've been at 95-100%!~
I cried when I saw how well he ate and how well he's been breathing! and they said it would just get better. He doesn't gasp for air anymore hardly at all!
His wounds are healing GREAT and very fast as I knew they would. I don't have any new info on his weight. last I heard he was 3.5 kilos or around there.
Turns out the hole in the bottom of his heart (VSD) was SO large that the doctor was shocked he was able to have energy to eat ANYTHING by mouth or even be awake for more than a few minutes at time. He said in an adult it would've caused problems!~
He also had the 2 small ASD's which I was suprised to hear. but they patched it all up.... I'm so happy he's home!!
30-10-2008 - NEWS: Tyler got scheduled for his OHS (open heart surgery!)
My mood while writing this blog:Happy!
Hi all! We went to TJ's appointment today with the surgeon who's going to be doing his OHS or Open heart Surgery for his VSD. Again, common with down syndrome.
He said that he thinks it's time because A) TJ is going into congestive heart failure (arent they always?)
and B) Failure to thrive. He's lost 4 oz as of now.
so They set it for this upcoming TUESDAY: November 4th!! AHHHHH. lol, it's kind of nervwracking.
He said that he's going to use subcutaneous sutures on tj (under the skin) to close him instead of staples, just like they did with my csection.
and that he expects him to be in the hospital for about 2-5days.
I'll be staying at the ronald McDonald house for several days until he comes home (Loma Linda is an hour away)
I'm REALLY excited! And DH's days off next week fall on Mon. and Tues, the preop appointment and surgery days. YAY! so he doesn't have to take time off work or anything.
He also told me that the death rate is only about %1 for this surgery!
Unfortunately TJ can't have his hearing screen yet because CCS's preauthorization expired.. darn it. So they've got to get a new one.
He had his RSV shot 3 days ago so we are on track with all vaccinations and everything. The goal now is to not let him get sick over this next week.
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Friday, October 17, 2008
New updates on TJ, Carlos and I Category: Life
Well, TJ had his 2 month appointment, physical, and shots today. Poor guy.
He's got chicken legs so those big ol needles must've hurt him bad! he screamed quite a bit. he had to get 3 shots. As of today at just over 2 months old he weighs 7lbs 8oz and is 19 in. long! that's up from 5lb5oz 18 inches at birth!
He was pretty sick early on in the week and kept me up screaming . I finally fell asleep with him facing me still crying and screaming. and I woke up to my brother in there trying to calm him down. (I was sleeping in the nursery so that hubby could get some sleep since he had to be up at 6am)
Tomorrow we're going to the pound to look for a pit bull puppy, a female. We want one for TJ and we're not worried about the breed. If you know us you knwo we've got a Rotty that's over 100lbs! she's a complete sweetheart!
Tyler has begun making a few noises and giving us a fleeting smile here and there. The doctors do think he's deaf or hard of hearing because he failed 2 newborn hearing screens in the hospital before discharge. We find out at the end of the month at his more comprehensive hearing test. tho we don't wish it on him it's not a problem if he is hard of hearing or deaf since I sign quite fluently. (SEE sign not ASL) and hubby is learning some. So far we are trying to teach TJ Mamma, and Daddy... alot of other words too. We expect him to pick up and sign his first word at 6 months, hearing or no. Babies learn to sign more quickly than they can talk.
Also today at the doctors I weighed myself and I'm now 2 lbs below prepreg. weight and still losing! YAY! hubby and my brother have been working out quite a bit and he has put on several pounds of muscle which he looks great!
The day after bringing TJ home I fell on the stairs (by myself) on my back and hit the middle of my back quite hard. I got xrays a week later when intense pain began and found out that I have, a) Scoliosis,
B) Arthritis (CMON!! I'm 21 yrs old!)
C) Weakened bones/disks!!!!!
Can you believe it? My back has been hurting so bad. I'm living on Tylenol, IBuprofen, Heat patches and ICYhot.......
Well, that's it for now! hubby and I's birthdays are next month! I'll be 22 and so will he!
To my friends, give me a call if you want to hang out! I don't think I've got any plans on my birthday (Saturday Nov. 15th!) and i'd love to do something...
Message me for my number if you don't have it!
04-9-2008 - PPD and Tyler and me
My mood while writing this blog:Sad
Well, we couldn't see tj today due to moving. I had literally 5 big guys (size 5'11- 6'5) helping and I just packed boxes and let them carry anything even remotely heavy I also did the driving. We managed to get a uhaul but had to ask my grandpa for a little money for help til we get help. Tomorrow we find out if the woman here at one of our local churches is able to help us with rent (shes asking her boss at the charity for $1000 even tho we owe $800) and she's giving us a food voucher check for $150.. which is greatly appreciated. neither we nor my mom have any food really at this time.
well.. regarding Tyler... Today his nurse called me. They did a test on his thyroid to check his hormone levels. it's not something they typicaly do at normal hospitals but they do it standard at Loma Linda since the have a lot of downs babies.
Well... his levels are LOW so Hypothyroidism. she said that he wont go home in the next few days til he sees an Endocrinologist doctor and gets his levels corrected with oral meds. she said they'll get him off any meds over this next week but she did say it'll be at least 1 week til she sees him coming home.
She also said that if he STILL isn't eating well (could also be caused by the hypothyroidism) that they WILL send him home on Corpak or a feeding tube thru the nose. Which is great cause they're not gonna push a gtube insertion!
I'm sad that he's not coming home cause he'll be 1mo old by the time he comes home. HOWEVER this is really giving us time to get moved and settled.... I've been pretty sad lately and my OBGYN told me if I don't feel better at tbe 4 week mark then to call so they can get me on antidepressants. my mom thinks I do have PPD because when I REALLY think about it, the only things making me happy these last few days are TJ and hubby even tho my family is here for me. I just can't really cheer up. I knew I was at risk for PPD because I delt with depression as a teen. I'm not feeling suicidal or anything. just blue.......
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Monday, August 18, 2008
Tyler James Hamilton Is HERE!!! Current mood: TIRED, HAPPY, and PROUD Category: TIRED, HAPPY, and PROUD Life
Hey, Sorry I haven't been on in a few days. I have big news!!
UPDATE: Tyler James Hamilton was delivered Via Csection on Aug 14, at 4:44pm weighing 5lbs5oz At Loma Linda Hospital. I was 35w5d pregnant. My doctors decided to deliver him after my normal appointment ultrasound showed Ogliohydramnios or NO or Little Fluid. He was also at that time diagnosed with a rather large VSD or hole in his heart due to the DOWN SYNDROME. He also has a tiny ASD which they expect to close soon. The VSD will require surgery at 4-6 months of age as long as he's strong enough and they'll watch him closely for heart failure and things like that til then. Funny thing is I did get to experience real contractions. My U/S lasted ½ hr or so, and she pushed REAL hard on my stomach w/the wand.. By the time I was in L&D waiting til my surgery time (set as STAT Csection not really emergency) I begun contracting every 3-4min… boy did they hurt and I was happy to have my Spinal!
Upon delivery, the doctors and nurses had carefully greased up they're gloves and his bedding in preparation for his fragile skin. He had some tears and rips where the skin had been abraded in utero and thru the birth itself. But most of the tearing came after birth during his first few hrs of life. This due to the skin problem (EHK) (if you need to know more read my other blogs!)
He was breathing room air w/the occasional blast of oxygen. Originally they wrapped his wounds with nonstick pads and COBAN or the kind of bandage they use when you give blood.. It comes in pretty colors and sticks to itself. Well we realized it was tearing his skin and I came up w/the idea of using the bandaging they put on burn victims. It looks like netting, with the nonstick pad underneath and aquafor on his skin.
As of today his skin is healed up and is beginning to peel some. He hasn't been eating well and has been de stating due to not breathing regularly (he breathes quickly). They said it's because of his heart and also the fact he's a preemie. He is ABSOLUTELY Beautiful. He's got the pretties dark blue eyes and cupid mouth. And he's got big feet with long toes like his daddy! He is also a very peaceful baby and very quiet. He only cries if A) he's in pain (that's been done since his 2nd day when he began healing up well) B) he's hungry or C) he's wet or poopy. Other than that he's content to sleep. He's not been eating well due to not having a good suck/swallow reflex. He'll usually eat anywhere between 2-25cc's of formula or breast milk. He eats a few one feeding and a bunch the next but they want him eating 30+cc's at EVERY feeding.
They've got him on antibiotics IV for 7 days and have an umbilical catheter in so they can give him things like his IV nutrition and any meds. He will be in the hospital at least til Friday and will only come home if he has, NO infection. Can eat well, gains weight and has NO de stats.
As for me I'm doing rather well, they've still got me on pain meds for my incision. They did a GREAT job on it, double layer stitching as well as stitches below the skin so no staples or outside stitching. (I think they applied a little glue too) I have been up walking around since 9am the day after my surgery, to the point the nurses made me lay down for a while cause I was up and about too much. I had been visiting the NICU between 4-6X a day for about 1-3hrs at a time.
I've been pumping since day 1. The hospital provided a Madela breast pump the good kind (yellow one not blue) and I used it while admitted. Tomorrow I go by WIC to pick up a WIC pump (as good as madela) My milk has just begun to come in today and I'm SORE. I had to begin massaging applying heat packs before pumping and ice afterwards, but I'm now finally getting about 5cc's from each side at a time and it's slowly increasing.The nurses and doctors have all been wonderful to us so the other day I had DH (hubby) go buy a thing of homemade style cookies for both the NICU staff and Maternity staff. They really liked them. Daddy is EXTREMELY happy to have his little boy here and both grandma's are proud. Even tho dh's mom wasn't happy w/the pregnancy and whole thing at first (she never really liked me) as soon as she saw TJ and I offered to let her hold him she teared up (tho she claimed she wasn't!)
The doctors and nurses designated me the "RESIDENT PROFESSIONAL" regarding his skin problem so I've had the sole charge of caring for his dressings and educationg anyone who doesn't know about it. Well, that's about it. Tomorrow we'll be staying at the Ronald McDonald house probably for the remainder of the week and maybe longer. If they have internet there I'll be on updating everyone on his status!
Cindie
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Friday, July 25, 2008
Updates on me and TJ! Current mood: tired
I really, REALLY pushed it too far today. I went out and spent too much time in the heat. Basically my hand's are swollen up so much I can't fit my ring on and my legs are swollen too. I've been having BH contractions for the last 2 hrs, but I'm not having enough to time them. I do know I've literally had like 5 bottles of cold water today so it's not a hydration issue.
Today tho I had my OBGYN appointment and in 2 weeks I'm having another U/S to make sure he measures right, then on Sep. 2 he's having me have my amnio, and if it comes up good that his lungs are mature, then I get to have my Csection on Wed. September 3!! YAY!
The doctor is kind of frustrated w/me not being able to eat enough. For example I only managed 1 meal yesterday and wound up eating too much and got sick last night. Dr. Block told me that I need to eat when I can what I can no matter what it is, even if it's kind of junk food. (French fries) SO I guess I've gotta try my best to eat more.
More....
Friday, January 18, 2008
Alright, well I just had my other ultrasound, at 5 weeks 6 days, and guess what? I SAW THE HEARTBEAT!! my mom and hubby was there, and we were all excited. I saw it before the doctor did, and asked "what's that? " then he said, "that's the heartbeat!!! I was so happy. He's said that it's viable and wants to see me in a month @ 10 weeks
Friday, January 11, 2008
My first appointment! Current mood: froggy
Ok, I'm officially 4 weeks pregnant. I got all my exams done and the doctor said I look fine. He did have them draw like 8 Vials of BLOOD. UGH!~ I feel like a pin cushin, haha.
But he did a sonogram, unfortunately it's too early to see the sac. So he can't tell me if it's a Viable pregnancy. Meaning he can't say if it'll survive. BUT I do go back next friday for another ultrasound. He's hoping to see the Fetal poles and a heart beat! So HOPEFULLY things work out fine. And OMG I know it's TMI but I gotta pee every 2 hrs! UGHHHHH
Thursday, January 10, 2008
woo Current mood: awake
Ok, well I got my results back, obviously positive.
But when I called my OBGYN about my HCG levels 125 as of tuesday(pregnancy hormone in the blood) they asked me to come in tomorrow to get another test, The doctor there thinks the levels may be low And just wants to check me out to make sure everything is healthy. Normally the levels are supposed to double every 2-3 days.
More later.
Tuesday, January 08, 2008
I am really pregnant? Wow! Current mood: nauseated Category: Pregnant.. Nauseaus (a little) Life
Well it's 1/8 and yesterday I found out I was pregnant! it actually made me really happy. Having nothing to do with stupid carlos cheating. lol
Of course I DON'T see this as "now he'll have to stay with me, or this'll make us closer" but that's ok. because even if something crazy happened and he decided to leave me, I'd be ok.
I had 2 positive pregnancy tests, EPT's. And of course I checked them in the correct amt of time. lol The first things I did were call my dad and best friend. Then posted on myspace and changed everything up.
My friend sasha helped me set up my kitchen table with baby stuff so that Carlos would know. I had a note that said "daddy" on the front, I won't say what it said inside, because it was very personal.
When he got home I was posting pic's on myspace for the beginnings of my pregnancy album. He asked what I was doing and didn't even look over at the kitchen table for a few sec. When he did he said " Oh god! My life is over"
And sat down on the couch w/his head in his hands. Since we weren't trying for a baby he was a little shocked, BUT I wasn't on BC either so he did know it could happen. lol
Now he's being happier about it. He even rubbed my belly, and altho I told him "I'm not even showing yet, you can't feel the baby" he responded, "well I can imagine can't I?"
I think that's my clue that he's getting used to the idea. I go to get my blood test today, and then set up a dr's apptmnt. WOO
And then I went to my mom's as she didn't know yet. The way I told her was to actually give her the EPT's since she would ask "are you sure" otherwise. haha I also gave her a note that said Grandma on the front.
She at first looked at me and said "Grandma sent this?" And I told her "NOOO, look closer at what you have" then she realized they were pregnancy tests, got all quiet, then asked "is this for real?" then she said congrats and started crying.
Later my bro's got home and I told all them. My youngest bro Mikey was FREAKING out happy because he's been wanting to be an uncle for a while. he started jumping around saying YES YES I'M GONNA BE AN UNCLE haha, He's insisting that we have a boy for some reason.
Ohhhh, And we are hoping for a GIRL!
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