Hum Drum Hospital Stay

I just spent the night with Tommy in the hospital. He's been having blue spells with coughing, clammy skin and drenched in sweat in the middle of the night. I thought it might be his heart, so I emailed his cardiologist. He asked me to bring Tommy in to be admitted. Turns out he has a viral infection. Fancy word for the cold. Tommy is not typical, so when he gets even a little cold, he is potentially fighting for his life. Since the cold is a virus, there are no antibiotics that can be taken. We just have to ride it out. This is nowhere near as bad as the last time he got sick. We're very lucky! He's fine until he starts to cough, then he's turning blue. As of now, he is laughing at me, trying to get me to look at him!

He will be getting Benadryl for night time and we are going to let him sleep upright in his swing for the next few days to help with the congestion. It doesn't help that it has been raining. Rain makes his secretions run like a faucet. I am happy to say he is a comfortable 79% oxygen saturation level right now. We're going to see the Christmas lights tonight at our local county park. I can't wait to see Tommy's face. He is moving up to his big boy carseat tonight. Yay!

Sorry! I meant to post earlier!

We qualified for both programs! The medically fragile program has several other homeschooling families, so I am going to try to get together with a couple and see if we can work our something that would benefit all of us so no one would miss time with any of our kids.

I'm very excited about CLTC. They are shooting for 40 hours a week for a Personal Care Assistant to come to my home and tend to Tommy's needs. Whether it be a diaper change, a bath, or doing his laundry. She will be at least an LPN, so she can suction and feed him too! Yipee! We have a little bit of a wait on that because the coordinator said it takes about 10 days to hear back from Tommy's doctors. The doctors have to write orders for nursing. I told her which ones she would see the best results from the quickest and gave her their information. We are hoping for 3 days 2 nights. Woo-hoo!

I will have to post another update later. I am so tired. Tommy is getting blue again and he is getting harder to manage. He's waking up in the middle of the night coughing, blue, clammy and sweaty. I sent an email to his cardiologists. I'm going to try to take a nap because I had to get up with him very early this morning. He was desatting and I had to give him a breathing treatment.

A Little Nervous

Tomorrow, er, today I should say, as it is 1:30 in the morning. Anyway. I have representatives from two different programs coming to my home to assess Tommy tomorrow. At first I was really excited that we have potential help. I just don't know if it is going to be the right kind of help. Tommy is just falling through the cracks here. Until South Carolina gets its act together and a Medically Fragile waiver is signed into law, then we are just bobbing along hit and miss.

I still want them to come to our home because I want to hear what they have to say. I'm worried with the Medically Fragile program that transportation would be an issue. It has been suggested to me more than once to put my children back in public school. I'm not looking for the school to babysit my children. Look at all the germs they would be exposed to and potentially bringing those home to Tommy. Not to mention I'd have to send them to school in body armour. The school actually had an article in the paper at the beginning of the year advertising bullet proof backpacks!

The other program I don't know much about but I think I am going on a wild goose chase with them. I honestly am starting to feel like it's just easier to go it alone than to deal with the hassle of the different programs. Maybe I will be surprised, but I've been down this road before. In just 12 hours, I will be finishing up one meeting and preparing for the next.

If I won the lottery, I wouldn't have this problem. I'd have a housekeeper to tidy up and cook for the boys. I'd have a nanny to look after the boys when I had doctors appointments, and I would have a LIVE IN nurse that I pay privately to be my extra hands and eyes for Tommy. I'd actually have a room in my home just for homeschooling. No more cramped book shelves full of curriculum and reading on the couch. Hopes and dreams.....

Christmas Pictures

God Bless Us, Every One

What a day! I was up until 3 in the morning Christmas Eve. Finally after I had the last gift placed, the stockings stuffed and the pictures taken that I went to sleep. Brandon woke me up at 8 screaming to wake up, that Santa came! There was a bright red Razor scooter set up in front of the tree and I woke up in time to hear and see him squeal with delight, hop on it and announce, "this baby's mine!" I left the one thing he had asked Santa for unwrapped. Lincoln Logs. He was so enchanted. He said "Its exactly what I asked Santa for!"

By Christmas, so many people had told us they wanted to get "a little something" for the boys. Each "little something" turned into a a mountain of gifts. Without the generosity of so many people who showed us the true meaning of Christmas, this day would never had been so magical. I could never afforded to give them the day that they had today! Matthew believes in Santa Claus more than ever now because he got his Nintendo DS. He's been asking for it and writing Santa over and over asking for this one thing. Miracles do happen!

Most of the toys have made it out of their packaging and most of the trash has been carted off to the road for pick up in the morning. After midnight, the boys pointed out to me that Christmas was over. I told them no way! The tree is still up, there is still bits of wrapping paper and boxes ripped apart on the floor. And the room still felt like love. Tommy was laughing at me, taking my had to play patty cake with me. Rob was playing Connect Four with Matthew while Brandon looked on. It was a beautiful scene and the perfect ending to a joyous, perfect day.

Just a couple more days until Christmas! I am truly blessed this year. Thanks to a few precious people that I have never met, my children will be having the best Christmas that I could have ever imagined. My heart overflows with joy and the true meaning of Christmas.

The boys are getting a little crazy this week. The closer Christmas gets, the more rambunctious they are. Even Tommy is getting into the act. This evening as I was getting him ready for bed, he was laying on the living room floor. Matthew was standing near him looking for something. I look at Tommy and see him with a huge grin on his face. Well, sort of. It was hard to tell since he had Matthew's pant leg in his mouth! Oh, and earlier tonight, we went to dinner (Chinese buffet, my favorite!)and we kept Tommy in his stroller/car seat combo. We put up the hood on his car seat to just block out some of the noise and people nearby. It didn't do us any good. He figured out how to fold it back down and grin from ear to ear.

He's also learned to sign the word "play" this week! He refuses to stay put for any purpose whatsoever. The only time he is still now is when he is asleep, and even then he will wake up in a different part of his crib.

Matthew and Brandon are both about to go nuts for presents! There are some out and some still hidden. I feel like I need to stand over the gifts with a stick to keep them away! This is going to be such a wonderful day for them. I can hardly wait myself! After the year we have had, and the many, many blessing that have rained down on us in the just the past few weeks, I really do believe in Santa.

Rotten Weekend Finally Over

It's good to be home. Yesterday was just an upsetting day. As a matter of fact, something went wrong almost every day we were at the hospital. Friday was the surgery itself. We kept him quiet and sleeping most of the day. Saturday, his trach ties were very loose because the gauze over his incision had fallen out, then when Tommy rolled over, his trach mask snagged his trach and it came about 9/10ths out of his body! I heard a noise and his pulse/ox went off. I ran to the bed just in time to shove the trach back in before it was all the way out. He bled a little and the nurses were paging respiratory "stat". He was just fine.

Then of course, Sunday with the horrid, horrid RT. That brings us to Monday. We did a swallow study to test the function of his upper esophagus after the myotomy. It was a bust. He aspirated on the third swallow. I wasn't anxious until we walked in the room for the study and my heart started pounding. It just wasn't time. Nobody can say for sure, but there is speculation that Tommy may still have some swelling that may be preventing him from completing his swallow. We are going to give him another month and try it again. I don't want to think about past that. Another failure means moving on to very, very serious surgical intervention.

We got home late last night. We made a little stop at Walmart. We were given a gift card and he decided to use it on me. I now have a brand new sewing machine. Problem is, I'm not quite sure how to use it yet. Once I get the basics of threading the machine down, it should be a breeze to learn after that.

I'm So Furious!

Tommy's nurse woke me up for help because they had tried to get a blood pressure on him (which he hates) and he got upset. Since he had just woken up, he had thick secretions and then he was coughing and upset on top of that. His pulse ox is blaring like crazy. She tried to suction but she couldn't get him clear. I got up to help and told her that we could do a breathing treatment and it would help calm him down. She said yes, it was time and they had paged respiratory, but there was no Xopenex on the floor.

Finally, the RT gets there. I looked at Tommy's pulse ox and its blaring, but well within his limits, so I said "why is is pulse ox going off?", The RT mouths off sarcastically. "Beeecause his oxygen is low?" WTH? Then she suctions him and I can hear he has a clear airway. His sats are great for him and she grabs an ambu and starts bagging him, Hard! Tommy is turning purple and I ask her why is she bagging him??? She ignores me and starts the neb. After 5 minutes, she yanks it off and hooks his O2 tubing back up and leaves! Xopenex nebs take a good 10-15 minutes!

Tommy starts desatting like crazy after that. He is obviously distressed. I suction once and check his O2. It is set at 30% and he is supposed to be 35%--higher if he's distressed. That crazy RT HURT my child!

As soon as I found out what she'd done to his O2, I called his nurse to the room and told her to find out who she is, report her to her boss and to NEVER let her near my child again! I told his nurse that the RT doesn't know who she's messing with. As long as my child is a patient in that hospital, the nurses, doctors, techs, and yes the RT's work for me. And I will fire you. End of story!

His nurse is in the process of writing up a report right now. She just pointed out to me that the RT never introduced herself to either of us. Word spreads fast around this place. Tommy is a special case and has lots and lots of regular caregivers here that will not tolerate their little guy being hurt. Let her try to get past me in Tommy's door way. It will make the national news.

Tommy's Myotomy

I've been at MUSC with Tommy since Friday morning. He had his procedure on his esophagus to hopefully repair his swallow. I don't know what is going to happen next. I'm cautiously hopeful that when we do his swallow study on Monday that we will see success. I'm nervous and excited. Too many "what ifs". What if it doesn't work. Then I put my baby through pain and suffering for nothing. But what if it does? Oh, the JOY!

I am tired. I am up way, way too late. I guess I can't help old habits. Time to get some sleep.

We're Going To The Media!

We have been denied nursing yet again! Yes we got him put on the Medicaid waiver critical list and yes, we got put at the top of the list. But when we sent off the paperwork to see how many hours of nursing he would qualify for, it came back denied because he doesn't meet the level of care for a mentally retarded child. Of course not! I decided to write an open letter to the media. I sent it to all three local news stations and the local newspaper. I also had my advocates at Family Connections forward the letter to every influential person they knew including senators and the Governor. Here is a copy of the letter
~~~~~
To Whom It May Concern,



I need your help. I am trying to raise awareness for families with medically fragile children. I am the parent of a medically fragile child. My name is Rene ****** and my youngest son is Tommy. Tommy is 14 months old and is medically fragile. I cannot work outside the home because I am his sole caregiver. Because of the laws in this state governing Medicaid, my family cannot receive services that would make our daily life with Tommy easier. My main concern is that we do not qualify for home health nursing because Tommy does not fall into the specific categories that Medicaid deems critical to receive services.



These categories are: Being mentally retarded or have a related disability, having HIV/AIDS, having a spinal cord or head injury, or mechanical ventilator assistance for breathing. Because Tommy does not fall into these categories, we have been denied a Medicaid Waiver and home health nursing. Now I will give you some background on Tommy so that you may see what at injustice this is for him and our family to not be getting the help we need and deserve.



Tommy was born 7 weeks premature on September 25, 2006 at the Medical University of South Carolina. He was diagnosed with multiple congenital heart defects (CHD) that require him to have 3 open heart surgeries before he is 3 years old. These surgeries will not fix his heart, but merely reroute the way his body pumps the blood so that his heart will not have to work so hard. Tommy only has one ventricle (or lower chamber) in his heart instead of two. He has very low oxygen levels in his blood and he is often blue. So far, he has not been able to have the surgeries he needs, but has had two other open heart surgeries to help him along until he is healthy enough for the rerouting surgery. The first one was at 4 weeks old and the second one at 9 months old. After the first surgery, he spent 5 weeks on a ventilator. The vent caused scar tissue in his windpipe and Tommy could not breathe on his own. He now has a "trach".



A "trach" , also known as a tracheostomy tube, is a plastic tube that is inserted through a surgical opening in the windpipe through the neck so that Tommy can breathe on his own. It also leaves him very open to germs, dust, fur, or any other small foreign object in the atmosphere. We cannot vacuum with him in the room or use anything with a harsh smell because it can burn his lungs. We must also manage his secretions by suctioning them with a small machine and carefully care for the area daily. He is also very susceptible to germs and must be kept at home as much as possible.



He has a birth defect that affects his swallow. The clinical name is Congenital Cricopharyngeal Achalasia. It means that when Tommy swallows, only a little gets swallowed then his esophagus clamps shut and the rest of the saliva, food, etc, then slides down his windpipe into his lungs where it irritates and causes him to have scar tissue. The condition is so bad now that he often has asthmatic type episodes of wheezing and coughing to the point he can't catch his breath. Just last week, a mild lower respiratory infection that would give a typical child his age a runny nose and a cough put him in the hospital for over a week. Since his second heart surgery at 9 months old (done in June of 2007), Tommy has been oxygen dependant. He wears a small collar over his trach that is attached to about 15 feet of tubing that is connected to a machine providing oxygen to him constantly. If we go anywhere (rarely, unless it is to the doctor), we must take tanks of oxygen with us.



Lastly, because of Tommy's poor swallow, he cannot eat by mouth. He has never taken a bottle or eaten anything since birth. He is fed through a tube in his stomach called a gastronomy tube (g-tube). Twice a day, and then again as he sleeps at night, I hook him up to a pump that feeds him Pediasure. I have to be very careful to measure exactly how much he is getting and keep track of the amount of calories he gets in a day.



A typical day for us begins with a breathing treatment with a nebulizer to help open Tommy's lungs. This takes about 15 minutes. After it is finished, I move on to caring for his trach, which includes cleaning the site with peroxide and saline, then rinsing and drying. I then apply ointment to any spots on his neck that may have been rubbed by his ties. The trach is held in place by foam and velcro ties. They must be changed daily as part of this care. I must be very careful because his trach is his only airway. If he wiggles or coughs too hard, the trach can accidentally come out while I am changing these ties and Tommy will not be able to breathe. This is a two person job. Right now, my nine year old son is our extra set of hands.



After we clean his trach site, we clean around his g-tube and coat the skin around it with ointment so that his stomach acid doesn't burn his skin. We then change his diaper and dress him. Next it is time for his morning medications. Tommy gets 4 different medications each morning, 2 in the afternoon and 5 each night before bed. After his medications have been given, if it a day he has therapy, then a therapist comes to our home for an hour to work with him. One day a week for occupational therapy, and one day a week for physical therapy. Tommy cannot sit, crawl, walk, or navigate on his own yet. Twice a month, an early interventionist comes to our home to work with him as well. If it is a clinic day, which is approximately once a week, we load up oxygen tanks, suction machine, emergency bag with his trach supplies, his feeding pump and a full size stroller to carry it all into our van and drive to MUSC.



Tommy usually takes a light nap after his afternoon feeding and a longer nap with his dinner feeding (at about noon and 5 o'clock) He gets a breathing treatment every 4-6 hours depending on his level of wheezing. I must stay by his side 24 hours a day in case of an asthma attach, a mucous plug in his trach that I must clear so he can breathe, and just to monitor his coloring and demeanor. He is first and foremost a child with a severe heart defect. He is susceptible to cardiac arrest at any time. He also cannot make a sound with his trach. I must monitor him closely at all times.



In addition to all that Tommy needs, we are a homeschooling family. Tommy can pick up germs anywhere, so to cut down on the exposure and because Tommy is frequently an inpatient, we decided that homeschooling was best for our family. I teach my nine year old at home. He is my extra set of hands with Tommy and my extra set of eyes to help keep an eye on his four year old brother. We do our best to not only take care of Tommy, but to do the typical family things, like clean house, do laundry, grocery shopping, and do school work. There are many things we can't do as well. Things like take a walk, go to the mall, play outside (because I cannot supervise them and be with Tommy at the same time), wear perfume, have friends over, take a nap, take a shower (unless someone else is sitting next to Tommy), or sleep in my own bed. For six months, I have slept on my couch with a video monitor in Tommy's room so that I can see and hear him while he is sleeping. There have been many nights I must get up to clear his airway for him. Sleeping in my own room would be too far away from him to hear or to get to quickly.



So you see, I am in a difficult situation here. Home health nursing would give us the much needed help we deserve. Even though Tommy technically qualified for a Medicaid Waiver and is considered critical, he was denied home health care because he does not meet the cookie cutter standards that Medicaid has in place. The only help we receive is through a grant from Carolina Children's Charities, who graciously gave us a grant that paid for 8 shifts of nursing so that we could have the much needed help that we need. However, since the grant was only enough for 8 shifts, once we have expended them, there will be no more nursing assistance. We cannot use typical respite care because due to liability reasons. A typical respite worker may not suction Tommy's trach, or give him food or medicine through his g-tube. Even if I could work out a schedule for Tommy to not require food or medicine during his respite time, there is no way around not suctioning his trach. It is his airway, and if it is not kept open, he will die. He could use an off duty nurse for respite, but again, we don't qualify for this level of care.



Tommy needs skilled nursing care with a person experienced with premature children, heart conditions and tracheotomy care. A nurse must be in our home who can assist us with his care, and who knows how to administer medications and feedings by g-tube, CPR with a trach, what to do if his trach came out, and general pediatric knowledge. We cannot be the only family in this state in our situation! Help us please to raise awareness that not only do our laws need to change, but to alert the general public that there is a need in our community for assistance for medically fragile children. We should not be discriminated against because we are on Medicaid. We deserve home health nursing. Tommy deserves it.



Thank you for learning a little about us. Please feel free to contact me at the address, phone number and email below. Something needs to be done for Tommy.



Sincerely,



Rene ******

Santa!

Today we went to a Christmas breakfast put on by Family Connections. They are an advocacy group for special needs families. It was such a great experience. Very low key. We had breakfast brought to us, and then after we all ate, the kids got to see Santa and get pictures done. There is no way that Tommy would have ever been able to see Santa any other way. Last year he had just gotten out of the hospital and was so tiny and sick. So today, he sat on Santa's lap for the first time. Matthew and Brandon had a great time too. Matthew could hardly wait for his turn, but Brandon had to be coaxed out from under a table, ha ha! Here they are! Merry Christmas!!

Christmas Is Coming, Let's Have Some Fun!

Our tree is up! YAY! The only strange part is having the air conditioner on next to the tree. It was in the mid 70's today, but Tommy's oxygen concentrator makes it about 10 degrees warmer in the house all the time.

I'm trying to get a little excited about Christmas. I've been dealing with so much with Tommy being sick, home schooling, and just being a mom that Christmas was starting to seem like another hassle. I MADE myself get the tree out of the shed and MADE myself move around things so we could put it in the window. When it came time to set it up, though, Matthew completely took over! All I did was put the legs on the pole and show him how the biggest color branches went on the bottom then to the smallest. He flew into action and put up the entire 6 1/2 foot tree all by himself while I took pictures!



Then when it was time to decorate, he went to my closet and carried out all the boxes by himself. He helped me put on the lights and then I let him and Brandon put on all the decorations by themselves. It's a beautiful tree!



That's a Frosty the Snowman pillow under the tree.

And here is the best part of Christmas yet!

Meet Dan Dan the Gingerbread Man.



I based this loosely on another web idea. Dan Dan is an elf, disguised as a doll. He watches the boys every move and at night teleports back to the North Pole to report to Santa. When he teleports back to Earth, sometimes his landings aren't very good. We found him one morning on a shelf behind a bag of noodles, and the next morning he was in a bowl on top of the fridge. Nobody knows where Dan Dan will end up and the boys have a blast looking for him! They've even started telling Dan Dan when the other does something wrong! Oh, it's so much fun!

Home Sweet Home

We're finally home! After 7 long days of just trying to keep his oxygen levels up and breathing treatments every 4 hours, we've finally made it home. Tommy is doing excellent. And I am hiding out.

I sent my kids to a friend's house. She has developed the bad habit of only calling me when she needs something, so I returned the favor. I needed someone to take care of the older boys so I could come home and decompress for a couple of days. So today I slept late and after I made a few business calls, I've been surfing the internet and watching Tommy enjoying himself rolling around on the floor playing with his toys.

I didn't know how much I needed this peace and quiet until today. Matthew and Brandon have been picking at each other for weeks now and they've been driving me crazy! With them out of the house, it is giving me some much needed down time. I played hooky today, but tomorrow I am cleaning my house from top to bottom without having to break up a fight or listen to how hungry they are just 30 minutes after a meal. (hello, boredom!)

I'm also still keeping a very close eye on Tommy. He has had a little bit of a clear runny nose today. I am hoping it is just from the change in air from the hospital to home. He's fine otherwise, so I don't think we're headed back to the ER any time soon.

He's rolling over really well now and holding up his head. I get the feeling determination will be taking over and he will attempt to crawl soon.

The Hospital Life For Me

Sorry it has taken me so long to update anything. Tommy has been in the hospital since Tuesday night, and our room only has web tv, not regular internet so it is really hard to post or get certain email programs to work. I've mangaged to keep a carepage up and running.

Originally it was thought he has the flu, but he has no symptoms, so it is being called a "lower respiratory viral infection". He has very poor lung function to begin with so this is really hard on him. His heart is also unrepared, so that adds to the mess as well. All we can do is management. We will be here for the rest of the weekend. Maybe longer.

The Hospital Life For Me

Sorry it has taken me so long to update anything. Tommy has been in the hospital since Tuesday night, and our room only has web tv, not regular internet so it is really hard to post or get certain email programs to work. I've mangaged to keep a carepage up and running.

Originally it was thought he has the flu, but he has no symptoms, so it is being called a "lower respiratory viral infection". He has very poor lung function to begin with so this is really hard on him. His heart is also unrepared, so that adds to the mess as well. All we can do is management. We will be here for the rest of the weekend. Maybe longer.

Update on my week

I really need to blog more often! Here's an update of what's been going on around here:

Tuesday: New nurse day. She was fabulous and I can't wait until she comes back! I took a short nap and even had the kids outside playing in the yard for a couple of hours. She is such a great fit for our family and I hope to steal her away when we get our full time nursing budget.

Wednesday: Boring day, no therapy, just us hanging out as a family

Thursday: Cardiology appointment for Tommy. Not a great day, but it was expected. I had a feeling about what they'd say. His doctor suggested that Tommy go to the cath lab as early as next week to try to open up his shunt a little so we can wait on surgery for a little while more. If they can't open it, then we are facing OHS yet again. The cath will tell us the type of heart surgery he will have. Good pulmonary function means we do the Glenn and poor function means we just resize his shunt again. I'm just waiting on a phone call. If I don't hear from them soon, I think I need to call.

And of course, today is Friday. Tommy has been tired lately so PT consisted mostly of sitting and reaching. No heavy duty work today. I've been trying to squeeze in a few homeschool lessons, but it's hard. No matter how hard, it sure beats sending them to school then wondering how they will get home when Tommy has a doctor's appointment.

Here comes the new nurse

Here we go again....

Tomorrow we get to break in a new nurse. Of course the house looks like a snow globe after you shake it, and I feel compelled to clean, clean, clean. The sad part about this is, I need help with Tommy before I can clean, so guess what...I gotta have a nurse to clean up before the nurse comes! Oh the hilarity of it all! I try hard to do what needs to be done around here, but with 3 kids, including all of the care that Tommy requires, I'm lucky I get to take a shower. It's not like I can leave the room to take care of cleaning, and by the time he goes to bed at night, it's after midnight. I'd call for Calgon to take me away, but I don't have time for a bath, haha.

So I guess I will do the best I can and pray she sees what I go through every day and show me sympathy. I hope that Brandon doesn't torture her. He likes to bug the crap out of every adult he encounters. I think it's his goal to annoy every person taller than him.

I'm off to teach a social studies lesson. I'd much rather sit on my couch and teach the lesson than deal with homework over something I know nothing about. Just another perk to homeschooling!

Back from vacation, back to the grind!

What a week we have had! We went to Myrtle Beach for 4 days and stayed with my MIL in an awesome timeshare. I got to sleep in a bed for the first time since July and I got to soak in a giant whirlpool tub and watch TV in my room at the same time. Now that's living! We also went to Broadway at the Beach. It's a giant boardwalk. We fed the fish, ate at Margaritaville, went to the KISS Coffeehouse, and saw a giant dragon talk trash about another dragon. Very funny!

I needed the getaway. This past Friday we saw Tommy's ENT. We were told he needs a surgery to try to stop his aspirating. It's called a cricopharyngeal myotomy. We have a 50/50 shot of it working. It's scheduled for December 14 and he will need to spend 72 hours in the hospital afterwards. If it doesn't work, we're back to square one. His doctor seemed very concerned, so that scares me.

Since we've been home, we've been approved for a Medicaid Waiver on the critical list. We have also been assigned a new nurse who will be here Tuesday. I hope she's well rested! We've also already been to the hospital for his monthly RSV shot, and to the Social Security office for his yearly review. Finally, we ended our day yesterday by going to the WIC office and getting him switched to Pediasure. He has a little bit of formula left, so I'm going to finish that out this week. With the Pediasure, he will be getting more calories with less volume. I'm sure he'll tolerate the switch well, but I'm always nervous about change.

Speaking of change, if you check out my avatar, you'll see that I had my hair cut. It was okay getting it cut, but I cannot tell you the number of times I talked myself out of it before I finally went for it! I donated my hair to Locks of Love.

Score One For The Little Guy!

Where do I begin. I have been Tommy's sole caregiver since he was born. The only time I have left him is if he has been hospitalized and even then it was for the shortest time I could manage. My only "vacation" from him has been my monthly grocery shopping trip to Walmart when my husband keeps him in the van (and me with a walkie talkie just in case). I've been trying to get respite f~o~r~e~v~e~r! I am told again and again that a respite worker can watch him but for liability reasons, they can't feed him, give him medicine or suction his trach. I can work around the feeding schedule, but to not be able to suction his trach could potentially kill him. The trach is his only airway.

I've contacted the Governor office, I've contacted Medicaid, I've made quite a bit of noise on Tommy's behalf. How can I be a good mom/nurse/caregiver on little to no sleep? I finally convinced my Early Interventionist to apply for the Medicaid Waiver program. If we could get to the top of the list, it would qualify us for skilled nursing in the home and I can use my time to clean house, teach the boys, or just rest. Right now none of those are an option. As a matter of fact, it's 1 o'clock in the morning and I am still awake trying to get laundry done, and if I'm lucky, I can sneak in a shower! It's going on a week and I am killing plants when I walk past, but I have nobody to watch Tommy. As a matter of fact, I'm watching him now, on the video monitor. We put a camera in his room. At any time, he could start having an asthma attack and I have to be there to clear his airway. I will have to shower with the door open and be quick about it...if I get to it.

So that is the background. Two months ago, we finally got our EI to file for the Medicaid Waiver list. We were placed at number 920. Then the case manager for the nursing agency met Tommy, called up our EI and here it is, two weeks later and I got a letter in the mail today that we have been reclassified as a critical case. Tommy got bumped straight to the top of the list and is now sitting at number 2. We're going to get full time nurses and respite now. What a huge relief! Now to nail down qualified nurses, but that is going to have to be dealt with another day. For now, I am going to revel in my victory!

Well, our nurse did start as planned on Tuesday and on Wednesday, I called her supervisor and asked her not to send her again. Well, it started off that before she came, she told me she would have to leave at 2 to go get her daughter from school and then be back around 4 and stay till around 6 to get her 8 hours. No biggie, since 2-4 is Tommy's usual nap time.

The problem is not only did she sleep sitting on my couch for nearly the entire time she was here, she never talked to Tommy or tried to touch him, hold him, etc. Then, we talked about what an early day is was to get used to at 8 o'clock. She said she has one client that wants her to come in at 10. I tell her that is great. Then she tells me she clocks in at the office at 8 but doesn't show up until 10 and then leaves at her regular time!

NO! NO! NO! NO! NO!!!! I was in such shock at what was going on that I didn't confront her. She was a nice person, but there is no way I trust her alone with my child. The case manager from the nursing agency is looking for another nurse. I'd rather do without than not be able to trust who is left with my baby.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Well, changing topics here....

The charity that donated the funding for the nurse also provided Tommy with a brand new crib! I finally got his room all fixed up for him and he is now sleeping (rather he's playing quietly) in his own bed in his own room. It took me a very long time to get it fixed up since it used to be Rob's office. Rob ended up coverting our second bathroom into his new office so Tommy could have his own room. My living room doesn't look like a hospital anymore! Now it's all neatly lining the walls in his room. It's so awesome to sit here and watch him on the tv.

Yep. TV. We put a security camera with night vision and sound above his bed and then plugged it into the RCA jack on the tv. Now I can watch and hear him all night long. If he wakes up having an asthma attack, I can see and hear him on the tv and rush to his side. He's only in the next room, but if I didn't have the sound up on the tv, I'd never hear him coughing.

Here's pictures of his room. I took the bassinette out and donated it to the charity when they brought the crib. Here is also a picture from the store's website of the crib since I can't get a good shot of it.

Ack! The Nurse Starts Tomorrow!

I feel like I am on the edge of cliff and I'm about to be pushed off! My house is a complete disaster area. It smells funny. I am too wound up to sleep, and in just 7 short hours, I will have a nurse knocking on my door. Part of me wants to cheer and the other part is completely embarrassed by the state of my house. Then I remind myself the reason my house looks this way is because I need help! I almost feel like I have to have someone here to help me get ready for the person coming to help me! I have mountains of trash in my kitchen. The neighborhood we live in says we can only put trash by the road that "fits in the can". If it doesn't fit, they won't take it. It makes me want to beat my head against a wall!

I've been working for almost a week to get Tommy's room cleaned out so that we can start using it for him. I'm nowhere near done. I guess after the boys go to sleep, I will take a trash bag in there and just start tossing everything. It used to be Rob's office, so it's full of who knows what! Brandon thinks its his playroom. I found smashed pink paint balls on the wall today. Yippee. I'm really hoping that this nurse is going to be super-understanding about our situation and can be a huge help to me. Just knowing I will be able to leave the room and another responsible adult is going to be able to take care of him feels so great. I'm hoping that tomorrow I can get his room done with her watching him. Oh, that would be Heavenly.

What I really want to do while she is here is SLEEP, but since Matthew and Brandon are going to be completely uncooperative on that matter, a nap will be out of the question. I can't even get them to go to bed at night. It's 1:17 by my clock and they are still wide awake. Maybe I should drag them out of bed for a cleaning session and see how fast they go to sleep! Speaking of sleep, I should be getting some. I have to be up and dressed and answering the front door in 7 hours!

Life Stinks Today

Tommy failed his swallow study today. We have proof he is aspirating on xray now. It stinks, but there isn't much I can do about it.

I'm so tired tonight. I might actually be asleep before my usual 2 a.m. Time to refill Tommy's feeding pump, put on a new nebulizer bottle on his humidifier, and set my alarm clock so I can get up and spot clean the living room so he can have occupational therapy tomorrow.

Life stinks financially right now. I am doing everything in my power not to call my mother in law for a loan, but every day that goes by seems to look more and more like I am going to have to call soon. I don't know how we will ever pay her back. I guess a lot of things stink around here today.

Lazy Sunday Afternoon

I'm having a nice, lazy day. It started a little on the tense side, but things have died down. Mean Mommy had to come out for a little while to get everyone to behave. One the older boys figured out I meant business, they straightened up. I even got them to pick up their room. Now Tommy is having a nice little nap, and Matthew and Brandon are watching television in their room.

Rob has not been feeling well. He's gained a lot of weight lately and is very discouraged. It's affecting his health. So he and I are changing our lives drastically. I changed his portions sizes to reflect our new eating habits. It's not easy for him. It's only easier for me because I have been doing this longer because of my own health issues (I'm pre-diabetic). He must have told me ten times last night that he was hungry. I haven't exactly been good myself. I did at least make a good choice for my sweet tooth...a can of beets! OHHHH, it hit the spot! Nice and sweet, low carbs, vitamins, no guilt there!

Rob is taking a nap right now. I'm a little jealous that he can go take a nap whenever the mood strikes him. Heck, I don't even have a bed right now! One of these days, hopefully before Tommy turns, oh, say three we will have him moved to his own room and I can have a twin size bed in there with him. I miss sleeping in the same room as my husband, but Tommy's health comes first. Until then, my living room is part entertainment room, part bedroom, part hospital. I am so thankful that when we got our taxes back last year that I bought very comfy couches!

The last time I had new living room furniture, I was 19, married to my ex husband and a brand new mom. We bought a sofa bed. NOT a comfy piece of furniture. When we moved to Maine, my ex thought it was a great idea to store everything we owned in his family's barn. Not only did it stink like crazy (it was a "working" barn with animals!), but the bull got loose and sat on my one year old couch! I've been using hand me down furniture ever since. I made a much better choice with these couches! Now if only I can get all of this medical equipment out of here, I might be able to find a place to sit!

Tuesday Catch-Up

I made it through the weekend and managed not to infect Tommy with my cold. Woo-Hoo! Our new central air was installed on Friday. It's twice the size of the last one. We used it for a while on Friday, but had to stop because we need to buy filters for it. We haven't had a chance to hit the hardware store yet. Maybe I will put that on Rob's to-do list for tomorrow.

I've been working on reorganizing my house again. It's an ongoing battle. Our house is just too small. The more I take out of the bedroom that is supposed to be Tommy's future room, the more gets dumped into it behind my back! It's becoming a catch all for whatever doesn't have a place. I'm so sick of it! It's all Rob's crap. If I had the time and energy, I'd trash all of it, but since I am peacekeeper around here then that's probably not a good idea. Besides, I have no time or energy.

I meet with a coordinator tomorrow who is getting us set up with our temporary nurse. The nurse has to work an 8 hour shift according to state law. My problem is I am not sure which 8 hours of the day would benefit us the most. She's probably only going to be here one day a week, so I also have to decide which day is most beneficial. If it is on a Monday, I would have to get up. Um, no. I try to not do anything on Mondays. Monday is usually my transition day. Tuesdays are occupational therapy, so for an hour she'd have nothing to do. Maybe that could be used as her lunch hour. Fridays are the same way. That might actually work to my benefit...If she gets here at 8 on Tuesdays and can help me get him up and do trach care while I deal with Monster kids and breakfast before the therapist gets here. She and I are going to talk anyway, so we can work out the kinks.

Well, Tommy is playing patty cake with himself. Right on time for dinner to be cooked, he needs a diaper change and some entertainment. Yep, I am going to love having somebody else here once a week to do all of the Tommy stuff for me!

I hate having a cold!

I've had an exciting couple of days. We got approved for a grant to get us a brand new central air unit. They are bringing it tomorrow. Everything has been going great for the past week until this morning when I woke up with a cold! Pleh! I hardly ever get sick, but when I do, I am so miserable. I am plowing on anyway the best I can. I just have to stay away from Tommy today. No play time with the baby. No kisses for him today. He will still get plenty of attention from his brothers, and I can wave at him from across the room. I really don't want him to get a cold. I have kept him (and myself) well for nearly a year now. At least this is just a head cold. Hopefully by the weekend I will be my old self again.

Now I have to go figure out how to clean my house so the air can be delivered tomorrow. Going to be a neat trick figuring out how not to bend over to pick stuff up!

Busy weekend/ Slide show for Tommy's first birthday party

What a weekend. I am so glad to see it over and done with! It started Friday with Tommy's well child check and shots. It got stretched out longer than I had planned. It just so happened to be the one day Rob could get overtime and I get stuck at the doctor's office. In the end, it worked out okay. Saturday, I WAS going to do the heart walk, but it wasn't meant to be. I really wasn't in the mood to haul around a wagon full of oxygen tanks just to be sure we had enough.

Sunday was Tommy's birthday party. I didn't think I was going to be able to make it to my own son's party, but that had a way of working itself out as well and it was an awesome time!

Today, we were back at the doctors office for another round of shots. This time it was for RSV and the flu. Tonight he developed a lowgrade fever for the first time since I've had him home (December last year!!!), so I was a little panicked. A quick phone call to the on call doctor didn't make me feel much better, because she automatically wanted us to come to the germy ER at 2 am. No thank you! I'll pass on that one. I gave him infant Tylenol and he was just fine. I'll call his regular doctor in the morning to just double check.

So there. I'm so beat! Here is a slide show from Tommy's first birthday party! Enjoy!

Tommy's First Birthday Party

365 days ago.....

My little baby was born. We knew he had heart defects and I was getting the best medical care. But nothing can stop your water from breaking. That is what happened to me on September 5th, 2006. I was admitted so Tommy and I could have constant monitoring. We tried to make it five weeks but the night of the 24th, I had a hard time sleeping and my gut knew the big day would be here when I woke up. I had no pain. I had been losing a little amniotic fluid every day but not enough to hurt the pregnancy. I was in bed all day except for 5 feet to the bathroom and a shower every other day. The morning of September 25, I woke up soaked with bloody amniotic fluid. I called the nurse and she talked to my doctors. I was told I was on high alert and to let them know if anything else happened. I wrapped a towel around myself like a diaper and laid on my side and tried to relax.

My best friend and her husband brought Brandon to see me a few hours later. When they left, she whispered "see you soon" to my belly. Ugh! Why did she have to encourage him??? When they left, I got up to use the bathroom and found my towel soaked again. My doctors held a quick conference and told me there comes a point when the decision must be made if it is safer to continue a pregnancy or deliver the baby and take care of him in the NICU. She thought I was beginning to have a ruptured placenta so I was to be induced. Silly me, I thought I had a few minutes. I barely had time to get ahold of my husband at work! He called his mom in KY. She left work, fed her cats and jumped in her car.

I was induced at 1pm and my labor started to progress around 4 or so to the point I could feel contractions really well. When I got to 4 cm, I decided to have my very first epidural. OMG! It was horrendous. My contractions were on top of each other and I was shaking all over and sweating like crazy. Every time the tech stuck my back I thought I would die. After the 4th stick we thought it was in a good spot. They administered meds and checked to see if I was numb. Nope! They gave more meds. Still nothing! So there I was with a needle in my back doing nothing, complete back labor, and going through natural childbirth by no choice of my own!

At 7 cm we went to the OR to deliver in case the placenta ruptured and they had to do and emergency C-section. Luckily we did not and when I hit 8 my body went crazy and I couldn't stop my natural urge to push. I held off just a little and when I got to 9 the doctor said "oh well, he's little, just push". So I did. Once. My best friend said Tommy shot out so fast the doctor almost dropped him! And then I head it...CRYING! I thought for sure my sickly little baby would be too weak to cry! That glorious sound filled the nursery next door and wafted all through the OR. I never saw him because he was supposed to be critical. He apgar'd at 9 and 9!

I finally saw him an hour later on his way up to the NICU. He was so big for a preemie, and yet so small compared to a full term baby. He was healthy and vivacious. I found out that the doctors had found a blood clot on the placenta so we had done the right thing. My mother in law made it an hour or so after he was born and we walked up to the NICU together a couple hours later after the team got him settled in. He spent only 5 days in the NICU and was moved to the stepdown unit because he was just so darn healthy! What a little fighter! (Now his heart is another story...) It's been an awesome year loving my little miracle. I hope everyone likes the montage in the previous post.

Happy First Birthday, Baby Tommy!

I was going to wait until midnight to post this, but I can't wait. Happy First Birthday, my beautiful baby Tommy.

Make an on-line slide show at www.OneTrueMedia.com

Look What I Found!

A friend of mine and I took our kids out shopping today to look for gifts for birthdays coming up. Tommy and my friend's daughter are having a joint party because her birthday is 3 days after Tommy's. She is going to be 3 this year. While we were in Big Lots, we see these big bins of shoes. We start digging around and look what I find in the bottom of the second bin. It was the only pair and they were my size!!! I'm going to wear them for the Heart Walk next weekend!



Aren't they absolutely appropriate? I love them. Oh, of all things, my AHA website managed to raise enough money to get Tommy his tee shirt. Good. We're taking it home...I'm still going to create my own. I will post it once it is finished.

Heart Walk Blues

I am feeling so conflicted! The American Heart Association is having their annual Heart Walk here on the 29th. A friend of mine is coming into town that weekend not only for the walk but for Tommy's party. If anyone knows me personally, they will know that I cannot STAND the AHA. I have LOTS of reasons, but the number one reason is that they only donate 1 cent of every dollar raised to congenital heart defects. That is pitiful to me. I have other charities I would rather donate to. The Children's Heart Foundation donates 100% to CHD research, and Tommy's surgeon is a member.

So back to the Heart Walk. I decided to participate in the walk because it is the ONLY thing we have locally to recognise our kids with heart defects. I'd love to start a local group just for heart kids, but I just don't have the strength or time right now. The walk for the kids is only a half mile and we are at the tail end of the "official" walk. Yep, use our kids for the billboards and posters then leave them out in the cold....

I logged onto the AHA website and registered Tommy and me to walk. It's "requested" that we raise a minimum of $50 so Tommy can have a "free" teeshirt that says "Heart Survivor". I figure the kid at least deserves a tee shirt after all he's been through! Great, so now I have to get donations for a charity that I can't stand to be associated with! I send out an email to my family and friends asking for their help. I called them in advance to explain why I was doing what I was doing and asked them to pass it on to whomever they thought would help. The website automatically sets our donation goal to $150 dollars. I figure if I can get 10 people to send in $5 dollars each, then at least Tommy will get the tee shirt. (He should get it just for being alive in my opinion...)

So now it's been 3 days and NOBODY has donated anything! I'm so conflicted! Am I secretly pleased that the AHA cannot use my child for bait for donations for something that will never benefit him? Or am I mad that he won't be getting that stinkin' tee shirt that he EARNED by surviving two open heart surgeries???

I was going to post the link to our page, but in all honesty, I'd rather design him my own tee shirt to show off at the walk. Greedy b@stards shouldn't be making me use my child for bait and switch! Give your money to the Children's Heart Foundation instead. I will add their link in the left column.

Patty Cake!

Wow! I was in the middle of my last post when I see Tommy doing something we've been trying to teach him for weeks now. He can finally clap his hands! Awesome! Here he is!

Working Hard

We (the therapists and I) have been working so hard with Tommy to build up his abdominal muscles. Every day, I unhook his monitor and feeding pump. I then take off his oxygen tubing so I can take his wet clothes off of him. (Lasix makes him pee a lot) I then sit him up so I can pull the onesie over his head. Well, this morning he decided to work those muscles! Here he is, awake for about 10 minutes and not cleaned up for the day yet. He's so proud of himself!

Meet Godzilla

We had such a great day today with homeschool. We went outside for science to learn how to observe. They did a great job because they found our new pet! She is a baby Anole lizard. They are very common around here. Matthew literally stalked this lizard for about ten minutes. He crawled on his belly after it while Brandon kept chasing it back to Matthew. Yay teamwork! So without further ado....Godzilla!

Here she is right after we caught her



That is a regular sized Crayola crayon! She's tiny



Her new home!

Grape Juice and the Thirsty Four Year Old

It never ceases to amaze me the things my kids will do. Brandon is such a character about everything. I try so hard to give him lots of positive attention, but when he scratches his butt with the baby's sensory brush, I feel pretty close to losing my mind. Thank Goodness for Clorox Anywhere spray! There are times I catch Brandon trying to be helpful. I say trying, because really, he's trying my nerves! For instance today, when he decided he was going to wash the dishes or take a bath with his clothes on. I was able to talk him out of the bath. Not so lucky with the dishes...He likes to wait until I am otherwise occupied, say like on the phone or changing a diaper to engage in heinous activities!

Here's the last straw today. He sneaked into the freezer, stole a can of frozen grape juice and took it to my room to hide. He then opened it and proceeded to drink the concentrated grape juice before Matthew caught him red, er, purple handed. Here's the evidence...

Pleeeeeaaaaase make them go to sleeeeeeeep!!!

Here it is, 1:30 in the morning and Matthew and Brandon are still going at it. Matthew wants to go to sleep, but that little snot, Brandon, has decided he's not sleeping today. He is driving us all crazy! It kinda has a snowball affect. If he doesn't sleep, then I have to stay up until he does go to sleep or he gets up and wanders the house getting into everything you can imagine, and none of it good.

I end up staying up late and have a hard time getting up in the morning. This doesn't seem to affect Brandon. He's up at the crack of dawn, even if he's only had 3 hours of sleep and he's ready to do it all over again. I end up passed out from exhaustion from the night before and Brandon gets into everything anyway. I sound like such a neglectful parent, but I have to sleep! I'm not talking all day, and not even a full 8 hours. If I am tired, I can't take care of any of them!

When I get up late, my entire day is thrown out of whack. Tommy gets trach care done later, which means he gets fed later. It screws up his medicine schedule and sometimes I don't get in all three doses he needs because I don't want to give them too close together just to get them in. For instance, tonight, I have to give him a dose of three of his medicines at 2 in the morning just to get him back on track.

Great....now they are in their room chasing a water bug. I totally hate child abuse, but I am borderline ready to go duct tape them down to their beds!!! It's time for "Mean Mommy" to make an appearance. Otherwise, it's going to be an all nighter for me.

Soy Milk Is YUMMY!!!

I'm still trying to stay healthy. Between cutting back on carbs and taking my meds, I have lost about 9 pounds total this month. I have tried to switch everything over to sugar free. I recently bought myself a treat. It was a box of sugar free pudding. I figured if I made it with reconstituted powdered milk, I would have myself a nice guilt free snack. The next day, my blood sugars were high. I couldn't figure it out. Turns out milk is milk. Even if you take out all the fat, you still have carbs. Phooey!

So I talk to my mom about it and she suggests soy milk. My first thought is "eww, gross", but about a week later, I am flipping through a magazine and there is a coupon for a dollar off a bottle of soy milk. I figure what the heck, lets give it a shot. With my coupon, the milk ends up being less than $2.00 for a half gallon. That's cheaper than the "real" stuff! I go with the vanilla flavor. I am still too chicken to waste my money on the plain. Tonight, I get home and put it in the fridge to get it nice and cold after our trip to the grocery.

I finally got the courage to just give it a try. It smells vaguely like baby formula. Once I got that visual out of my head, I took the plunge. I am pleased to say that I like it! It doesn't have the richness of milk. It's more of a watery texture, but very good flavor. I have to say I get the impression of a watered down vanilla instant breakfast type mix. Not bad for something good for me. Now I can have a little cereal every now and then. I can also make my pudding guilt free for real now! Regular milk has 12 grams of carbs for 8 ounces. Soy, even with the vanilla flavoring is only 5 grams for 8 ounces.

What Am I Going To Do With Myself?

Holy cow! Since we got back from Tommy's bronch, He doesn't have ANY doctor's appointments! Our next one isn't until September 29 when he has his one year well baby check. I am so excited to not have to run, run, run this month. Since Tommy was born, the longest I have been away from the hospital is only 10 days. Now I get to take an entire month off.

I am happy that now Rob can work all month instead of taking a day off every week (which means we lose money). We really need this break. We still have therapy several days a week, but I don't have to go anywhere. I still have to get Tommy out of bed every day, so I am not doing any extra except changing out of my pajamas.

Tommy is doing beautifully. He got another tooth and I didn't even know he was teething! He's been in such a fantastic mood. I think since he started the antibiotics for whatever was in his trachea really made him feel better. He is being lazy with his therapists, though, so I have been keeping an eye on his coloring and demeanor. I've determined he is just a night owl! I can get him up at 8 and he still wants to sleep all morning and play all night. The therapists can't change their times, so this is the best we can do. Hopefully I can get him to change his ways and stay awake when they are trying to work with him!

So now we are doing the birthday countdown dance...It's almost here! What a year we have had!

Catching Up For The Week

Well, we've had quite the week! Tommy had a routine bronchoscopy done by his ENT Friday morning. It went very well. I have all the medical mumbo jumbo on my carepage if anyone cares for technical details. It all comes down to his airway has grown. That's a mixed blessing, because it means yes, he has more of an airway, but it also leaves him wide open to aspirate more. Ho-hum...His doctor is sure it can be handled eventually and we have a 95% chance of getting his trach out once an for all. I've come to learn this past year to NEVER expect anything from Tommy! Good or bad!

So that leads up to Labor day weekend. We were lazy pretty much the entire weekend. Rob took Matthew fishing on Monday, but they ended up home after just a few hours because nothing was biting. At least they went and made a memory together.

Today was our first day of homeschooling for this school year. I think it went very well. Brandon learned what the letter "A" looked and sounded like, so that is a great thing. I think we will do a letter a week. Matthew wanted to be in Kindergarten instead of fourth grade today! He eventually settled down and had a really good day as well. Now I am trying to get them to go to sleep. It's a little after midnight and the little monsters just won't drop! I guess I will just have to keep getting them up at 8 in the morning and pray they start sleeping at night!

A Real Hero

Well isn't it great when you learn something new? I spent all night teaching myself a new feature I found bundled with my Windows Vista Media Center. Literally...I never went to bed. I guess it is time to "reset" my internal clock. I hope you enjoy the video. Here it is...

Do You Like My New Page Layout?

Today, I decided to update the look of my blog. I like the new look better. It makes it easier for me to look at the page and see his slide show and ticker. Today begins the countdown to Tommy's first birthday. In less than a month, my little fighter is going to be a year old! It does not feel like a year. It feels like weeks ago he was born. Maybe it's because wee one still sleeps beside me in a bassinet. I know he isn't going to be in there much longer. He is starting to get too long. I don't want him sleeping with his legs curled up after all of the physical therapy we have done to stretch him out! Speaking of PT, he's been doing remarkable in that area! Look what we have accomplished this week.

Here he is sitting up for a few seconds on his own. Not long, but he did hold his balance for the first time!


This is him playing on his tummy for the first time! He even lifted his head a few times!


The tummy is a really big deal. When we started therapy six months ago, he would hyperventilate the second we tried to roll him over. It has been a lot of hard work for all of us, especially him. I hope by his first birthday, he will be able to lift his head and play on his tummy, and be able to sit on his own. He will probably get a crib for his birthday. I've never made a big deal out of any of my other boys birthdays, but after all we have been through with Tommy, I wouldn't feel right without some sort of celebration. I've got a few more days to plan it!

Ramblings

Tommy went to the endocrinologist today. Just another "ist" to add to my already long, long list. My sleep schedule is completely screwed up. I end up being up til 5 in the morning, and sleeping until 11ish. Matthew and Brandon stay up so late and no matter of approach will sway them to lay their heads down and sleep! I have always been a night owl, but when Brandon can survive on 4 hours of sleep a day and go like a freight train morning and night, I am having a hard time keeping up with him! I need a week of sleep! I have been given a respite opportunity...I can choose whatever it is I would like to pamper myself. Tough call. I just don't know!!! I thought about checking into a nice hotel for a weekend and ordering room service and going on a garden tour. Problem is, I have to train Rob how to care for Tommy, and it's just not working out. The point is to get away from Tommy for a little while, but if I have nobody is this whole world that knows how to care for him but me, then how can I ever get away. Maybe my respite should be to send Matthew and Brandon away for the weekend instead!

Time For A Change

Today was a day for me. Well, I should say yesterday, since it is almost 3 in the morning...anyway...I took myself to the doctor. Not Tommy. Me. I have been worried since Tommy was born that my gestational diabetes was not under control. At my 6 week checkup after he was born I was told it was a little high and to see my regular doctor. I didn't have a regular doctor, and my insurance ran out very soon after that appointment.

I ended up finding a free clinic last week and made an appointment. I was not far off track in needing myself checked out. My fasting blood sugar was 131. Not terribly high, but enough that the doctor started me on some oral medication and is having me monitor myself for a month. I will then go back and see if there is any change.

Now, Today today, (because it is almost 3 a.m.) well, that is another story. It's my birthday. I am 36 years old today. So I guess my birthday gift to myself was to get on track to getting healthy. I am going to celebrate by putting a roast in the crock pot when I finally get up so there will be no cooking on my part for my birthday dinner. I am going to watch High School Musical Part 2 and just relax. I am hoping hubby can take the older boys to a friends and all of them spend the weekend. I could really use the peace and quiet. Of course, Tommy would still be here, but he alone isn't really that much work. It's when you add all of his work in with cleaning house, cooking, taking care of the other boys, blah, blah, blah that is gets tough!

So. Happy Birthday to ME!

Decorations By A 4 Year Old!

Silly Brandon! I walked into his room today, and look what I found! They have bunk beds and Brandon has the bottom. I guess he needed decorations!

Homeschooling

Wowee! I think I am going to like the upcoming school year! Last year, during the second semester, we tried on homeschooling. I gave it a ton of thought and talked to Rob about how he felt. We have decided to go for it, and this year, not only are we homeschooling Matthew, but Brandon as well! If we were sending them to traditional school, Brandon would be in a Head start or Child Development type class, so why not!

I have been in touch with a lady here in town that also homeschools. We happened to be chit chatting on the internet and talking about Brandon. She offered me a book...well, that book turned into 3 boxes of books for both kids! I have posters, flash cards, books, you name it! I only lack getting chalk and some wipe-off markers and we are ready to rock and roll!

Since they didn't have much of a summer with Tommy having surgery, and all of that yucky stuff, I decided not to start them until Sept 4th. The regular school district starts here Aug 21, so it isn't too far behind the regular year. I am really excited to get on a good schedule and watch them thrive and learn each day. Here's the latest of the troops!

Sleep Deprivation And The Trach Baby...

I am blogging at 4:19 a.m. I am dead tired, and cannot fall asleep. For the past week, every time I have dozed off, Tommy has awakened. As if on cue, his little feet flew into the air as I began to write this blog. You see, Tommy does not meet the criteria for Medicaid to provide him a nurse. They have a waiver program, but that is only for mentally retarded children, or children on a ventilator. Since he can breathe on his own, he doesn't qualify. The fact he is BREATHING THROUGH HIS NECK does not count for anything. Neither does the fact he is on oxygen. Or fed through his stomach. Or has unrepaired heart defects. Or can't swallow. Developmental delays don't count. He is 10 months old and has the physical movement of a 5 month old!

Nope. No nurse. Just me. I cannot work, even if I wanted to. Good thing I wanted to be a stay at home mommy. That is about the only good thing about the situation right now. As his Mommy/Nurse I care for him 24/7. You would think I would care for all of my children 24/7, as you would yours. No, no...I mean physically doing something pertaining to his medical needs 24/7. Loading and prepping his feeding pump, administering medications, physical therapy, caring for his trach and gtube sites, and suction, suction, suction, suction, suction! The more it rains, the more gunk he gets in his trach! Oh, I forgot to mention that these are in addition to bathing, dressing, diaper changes, kiss the ow-ee, playtime, get up, and put to bed stuff of a typical baby too!

I am soooo frustrated. I KNOW if I close my eyes and start to drift off, he is going to start coughing and gurgling his trach. I guess I am just going to have to risk it. I am so sleep deprived, I can't even find an analogy for how tired I am! Wish me luck and at least a partial dream before he needs me again.

Oh, as a postscript, I just want to add how much I love Tommy. I would do anything for him. I just cannot be a good mommy to him and to the other boys if I am too tired to function. I just need a little help and the system is messing me over.

Perspective

I have been doing lots of thinking. Well, I actually do thinking all of the time, and I am sure I "over think" most of the time. Sometimes I have to wonder why I have been put in this position with Tommy. I have my boo-hoo moments. I have temper tantrums too. Sometimes the pressure valve just needs releasing. I guess I can't help feeling sorry for myself every now and then.

Two days ago was a bad day. It took us long time to pack up Tommy's equipment and load our van for the drive home Monday night. I was tired, hungry and hot. Rob had been home by himself all week and I had been expecting him to finish Tommy's room. In a week's time, he hadn't even taken out the trash, much less worked on the room! I started a nice little fight. Sat around with my underwear in a knot for an hour or so, finally ate my dinner and calmed down. He hadn't done anything wrong. The reality is he worked overtime all week and had not had a chance to do anything. We get over stuff like that pretty quickly. See? Pressure valve.

Then I have a day like today that puts my life into perspective. This is what it is all about. I woke up this morning...okay, it was noon and the phone was ringing, but I was up until about 3 a.m. I am now stressing out that it is noon, Tommy is still sleeping, Matthew is watching a movie, very loud, and Brandon is trying to sneak a jar of peanut butter to his room. I snatch the pb, yell for Matthew to turn down his movie, and look at Tommy. I KNOW what he has waiting for me...exploded diaper...but he's sleeping, so I let him. I figure it's already a mess, why deal with a mess and an cranky baby!

About 30 minutes later, he awakens on his own with a gorgeous smile on his face and a smell coming from his bed that lets me know it's going to be a fun day! As I start to undress him (with Matthew and Brandon running laps through the house), the phone rings! Get Tommy to the floor on a blanket, completely naked, there's the phone again! Repeat this about 6 times in less than 20 minutes as I am trying to bathe and dress Tommy without being peed on or letting him yank out his Gtube like a ripcord. Success! We move on to trach care, then I give him all of his meds. I am trying so hard not to get stressed out by this time, because his meds schedule is out of whack, he hasn't been fed yet, and it's now going on 2 p.m.! It takes such a long time to just get him out of bed in the mornings!

I finally have a clean, dressed, content baby on his blanket. I get his feeding pump primed and start to add the formula and it occurs to me that I don't actually have to "feed" him-the pump does. No "whoa is me" moment that Tommy can't take a bottle. No "he will never breastfeed" flashbacks. I am suddenly overjoyed after the morning (afternoon) that I have had, that I DON'T HAVE TO WASH BABY BOTTLES!!! I am suddenly tickled pink that I don't have to hold a bottle for him, burp him, or worry about him being fussy over a gassy tummy.

Sure Tommy is hard work! Sure my house looks like a cross between a hospital and a zoo. But look at him! He just takes it all in stride. He gets excited to see his feeding pump the way another child would for a bottle. He knows how he gets fed, and the only one that knows the difference is me. No more yelling at hubby over stupid stuff (this week). No more freaking out about missing his Reglan. No more worrying he won't get enough calories today. Why? Because the entire time I was stressing out, he was laughing at me. When I walk past him, he grabs my legs. He loves me just the cranky way I am, and all of that other little stuff just seemed to melt away. How can I not just melt when I see this face.

Guardian Angel

I have a Guardian Angel. She is such a blessing! I will not tell her name, but I will tell what she has done. If anyone figures out who they she may be, please don't let her know I am bragging on her. Never having met me before, only knowing me from a support group I belong to, she took the time to drive to my town and sit with me while Tommy had heart surgery. That day, she bought all of my meals, then gave me an additional $50 just to help out. She also drove me home from the hospital so I could drop off some of my things since Tommy would not have a room for a few more days.

She is trying to get someone to fix my central air for me. She also called a geneticist about Tommy to try to get him seen as soon as possible. On top of all of this, she bought us a new, much bigger window unit air conditioner so that we will be more comfortable until we can get our central air unit running.

I don't even know how to thank her for all she has done. I have said thank you until I am blue, and it never seems like enough. She just laughs it off and says it's no big deal--and means it! She lives too far away to just stop by. As a matter of fact, I don't even know where she lives, just the town. I am so grateful to her and her generosity. I am so happy she is my friend.

74 Year Old Congenital Heart Defect Survivor

Two blogs in one day! This felt important to me. My grandmother was born with a Congenital Heart Defect. Atrial Septal Defect. A hole in her heart. It was bad enough to warrant surgery when she was a young mother. My mother, her daughter, told me growing up that my grandmother distanced herself emotionally from my mom because back then, when you had heart surgery, well, sometimes you didn't get to come home. But she did. I had seen her scar in the summer many times when she wore tank tops. It was just "mamaw", I never questioned why she had surgery.

In my mind, grown ups have heart surgery all the time. Like my papaw had bypass...that sort of thing. I only found out a month ago that she had been born with a heart defect. It hit me right in the gut. I have heard chatter that heart defects can be genetically linked. I don't know if that is our family's case. What I DO wish is that there was enough awareness out there to have warned me it was a possibility! There are posters in the OB's office for Spina Bifida, and Down's Syndrome. Both of which are very real diseases, but Heart Defects? Sorry, I must have missed that poster, because the very first time I ever heard of Congenital Heart Defects was the second the ultrasound found Tommy's. Sure, I had heard of "baby born with hole in heart" stories, and "heart murmurs". I was always told that the holes close up, the murmurs go away...Nobody ever mentioned babies DIE!

So here is a HUGE, HUGE accomplishment in the world of Congenital Heart Defects. A 74 year old survivor. Not only of the defect itself, but surgery at a time when it was so unsuccessful that my grandmother chose to keep herself at a distance from her children out of the fear they may not have a mommy once she got on that table. She is a very tough lady. I get a lot of my strength from her example. She is a strong woman. A survivor of things at one time unsurvivable. My Mamaw Winnie.

Borrowing Air!

I found my house! And then I had to leave it! We are still without central air, and here in Charleston, we are having a nice, hot summer. Our mobile home park cut down the trees outside of our house saying they were dead. I couldn't tell either way, so since they aren't technically MY trees, I can't do anything or complain to anybody. It makes me angry because we specifically picked the lot for the trees. Our trailer has an aluminum room and aluminum siding, so it's just like sticking us in an oven with the sun beating down. We also discovered that we don't have ceiling ventilation. So, yeah. It's hot in there. We tried putting up a blanket over our hallway and keep the air conditioner we do have in just one room. We also had 4 fans going in that room, and it still didn't help any. Our thermostat at one point behind the blanket read 105!

So we packed up all of Tommy's gear. Oh my gosh, what a nightmare! Oxygen concentrator, compressor, IV pole, trach supplies, clothes, various machines, not to mention what I needed for Matthew and Brandon. It took two hours to pack it all up into our van, but once we got to our friend's house, ahhhh, the air was so worth it! We have applied for emergency assistance to have the central air fixed. Hopefully I am going to get a call tomorrow to tell me they are coming! I have Vonage for a home phone, so if anybody calls, it shows up in my email when they leave me a message. I have my cell with me, so I just return the call. The only bad thing is where we are staying is 30 miles away, and I have no transportation back. Rob has to use our van for work, and my friends have appointments this week. Honestly, I don't care, I will figure it out if they call!

So here we are, in the air conditioning. Tommy is comfortable finally, and I don't have to worry about him getting sick from the heat. In the meantime, I can't stay here forever, so PRAY for our air to get fixed and I can go home and get back on a routine.

Where Did My House Go????

Tomorrow marks one week we have been home from the hospital. It has not been an easy journey. First of all, this oxygen concentrator is huge! Then there is the fact he must be tethered to it day and night! Because he is so little, and has a trach, he has to be attached to a humidifier. He has about 8 feet of hose, because if he had it any longer, he would be losing his humidity.

He used to sleep in my room, right next to my bed, but because we live in a single wide mobile home (my little tin box), basically, his bedroom is now our living room. Mine too. I now sleep on the couch. We are trying to convert the bathroom right next to our room into Rob's office, then the old office will be Tommy's new room. This is easier said than done! Hopefully we can get it all finished by the end of the month. Then, I can put his humidifier on a rolling cart and move him back and forth at night and in the morning. Oh, the new room is just off of the living room, so it would be perfect. Just a TON of work. As of right now, all of his medical equipment, bed, swing, supplies, EVERYTHING is piled up in the living room! We basically have a little path from one side of the room to the other.

Well, Tommy is now making noises to be fed and changed, so duty calls!

Pink, Awake, and Extubated Only 24 Hours After Heart Surgery!!!

Tiny Heart, Tremendous Miracles...

I don't like roller coasters, but the Universe has seen fit that I ride one this week against my will! Yes, Tommy has lung disease, and the fact of the matter was he was dying right before my very eyes. Rob and I started making arrangements....Then last night, his surgeon pops into our room and announces we are going in for surgery in the morning! He attempted to reconstruct Tommy's heart, but it would have been too much pressure on his little body, so he just upsized his shunt. It is just a band-aid, but at least I can stop with the dreaded "what if" death questions in my head! Now we have time to address his lung disease. Don't know what that is going to entail, but whatever it takes to keep my baby well. He will most likely be on oxygen long term....and I will be housebound....

So now, my baby boy is pink from head to toe. He is so beautiful. My life, my world, my heart, my soul all exsist in his tiny life. I never thought I would be happy to say Tommy had heart surgery today and I was thrilled all day long!

Pray For Tommy

Where do I begin? Grab some tissues. Hug your kids a little tighter. The cath was bad. Just devastating. It took the cath to tell us that Tommy was born with lung disease. We were all unaware. His shunt is closing and we don't have much time left. We are no longer good candidates for his repair. The pressure in his lungs is too high from the lung disease, and the operation would kill him. He is on 40% oxygen and his oxygen saturation levels hover in the 60's to 80's.

We can wait a few months to see if the pressures go down, but in that time, his shunt is closing up on him. We can try to upsize the shunt, but we are afraid the new blood flow would raise the pressure to an unsafe level and he would die anyway. Grim, grim, grim. I am watching my baby die. His doctor has gone over his results again, and has not let us know what he has decided. It is too tough a call, even for this skilled, gifted surgeon.

We were told the shunt has a month to 3 months left before it closes. There isn't a way to reopen it, just to put in a new one. If his lungs can tolerate upsizing, then we can do that and he will be on oxygen for 6 months to a year, praying they heal enough to proceed with the Glenn. He is in the pediatric cardiac ICU unit at MUSC in Charleston. Don't know for how long. If there is nothing more that can be done, we may end up home next week to play the "wait and see" game. But what if his shunt closes here at home, and he has a heart attack and dies in front of me? NO! I just want my baby well!

I have fought too damn hard for him! I prayed for a new baby, I planned for him! I want him! I came home for a night to shower and sleep in a bed, and I find myself crying, fighting sleep because he is not here. His presence is everywhere I look, and yet, the house is so empty. His Glenn was supposed to be a happy surgery. Stage two in a three stage repair. Road to recovery. I feel so cheated, robbed, my family violated by these terrible diseases wracking his little body! Why, oh why did Rob and I have to make decisions about his death tonight when he is still alive?

My tears have only begun to fall. By the time I have cried my last tear, this world will be awash in my sorrow. Please pray for my baby. Pray for a miracle, for the doctors to make the right decisions. Pray for time. Pray my little ones life will be long, full and joyous. Pray he will be a grandpa someday. Pray for my sanity. Pray for Tommy.

Heart Catheterization on Monday....And Scared To Pieces!

I wrote the following on a messageboard I belong to called Mommysavers. I didn't mean for it to be so emotional, but it ended up that way anyhow. After I read over it, I realized it says exactly how I felt. Here is what I wrote:

The time has come for Tommy's first heart catheterization on Monday and I am nervous. I know this is a routine procedure, but I am worried the trach will complicate things. I am also worried about the outcome itself. His sats (amount of oxygen in his blood) have been dropping slowly as expected, and he looks more blue every day. He also gets tired faster. He used to be go, go, go with his therapists and now he spends a lot more time resting.

This cath is going to tell us how long we have (or don't have) until open heart surgery. To be honest, the first time he went through this, it was nowhere near as scary. He was a preemie newborn, and I was in shock he was even here, much less going through surgery. When he has his cath Monday, it will be 8 months to the day since his last surgery. I have had 8 long months to get to know him, bond with him, love him, watch him meet difficult milestones. I know in my head that surgery is coming. I knew before he was born we would go through this 3 times before he is "repaired". But now that the time is drawing near, I just want to wish it all away. I don't know if I can stand the look in his eyes when he comes out of the sedatives after surgery and he wants to know in own tiny way, why he has to go through this!

I get so disgusted with the universe. Tommy was a planned, wanted, and anticipated pregnancy! I took care of myself before and after I found out I was pregnant. I know, the doctors all say it's not my fault, that 1 in every 100 babies will have a heart defect. So why my baby? Why did I have to join the club against my will? I keep getting knots in my stomach knowing surgery is coming, and yet knowing it's the only thing that will make him well. And it all starts on Monday....

Where Has My Mind Gone?

Oh my goodness, where has the week gone??? I am starting to get really scatterbrained lately. I cannot remember to do anything! I have let it slip my mind every day this week to get an estimate for repairing the A.C. and I keep forgetting to send in Matthew's homeschool report to our association! On top of that, I have misplaced my SSI mail for the month. Every month, I send in Rob's pay stubs, and then they send them back with a new envelope. I've lost the entire thing. I thought I had it, but my brain will not allow me to remember where I put it!

My sleep schedule is really out of whack too. I have to stay up until about 3 am to give Tommy his medicine and refill his feeding pump. Then I usually read to quiet my mind for about 30 minutes, so I am normally asleep by 4. Rob usually wakes me up at 6:30 to search for his clothes in the dryer while he takes a shower. I then go back to bed at 7 and set the alarm for 11. It's just so hard to get up when it goes off, but I don't have a choice--therapists will be knocking on my door twice a week around 12:30. I am still trying to figure out how I am going to get up at 6 am and function on Monday morning!

Speaking of Monday. I asked my friend if she could watch the boys so Rob wouldn't have to miss work. She flaked on me. She did volunteer her teenage daughter to come to my house, but that entails driving 30 miles to pick her up, 30 miles back, then do it all again to take her back. On top of that, she's a little bit of a troublemaker, but Mommy thinks her Baby can do NO wrong. (she has run away countless times, called DSS on her mom, lies, smokes, and is getting involved with an 18 year old boy in another state that she met playing XBox Live.) I had to be honest with my friend and tell her Rob didn't think it was a good idea to have her in the house. She acted shocked! I did the best I could and just told her Rob was being Rob. I also told her the truth, that Rob feels like if this girl is in our house, it's only a matter of time before we are being investigated by DSS as well. (my friend is dealing with accusations of domestic violence and child abuse charges that have been blown WAY out of proportion)

So now, Rob has to miss work, and we just can't afford it. I called my mother in law today to borrow money for gas to get us to the hospital on Monday. Ah well, we've been in worse places. We can finally meet our bills each month, there just isn't squat left over in the end! I think Rob is putting in for his raise, and he is working some overtime this weekend, so I am praying that will make up the difference of having to take the day off on Monday.

There is good news! I have managed to keep my living room looking nice all week. I am so happy with myself! Now I am off to find myself a little snack. I have been a good girl in that department, so I think a little something will be okay.