Monday, December 31, 2007

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!

Sunday, December 30, 2007

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.

Friday, December 28, 2007

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.....

Wednesday, December 26, 2007

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.

Saturday, December 22, 2007

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.

Wednesday, December 19, 2007

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.

Sunday, December 16, 2007

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.

Monday, December 10, 2007

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.


Rene ******

Saturday, December 8, 2007


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!!

Sunday, December 2, 2007

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!

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries