MDCP - Bridgeport

Tonight, Eric and I will be taking Caleigh to Bridgeport to stay in their local nursing home for 8 hours. From 4:30pm to 12:30am, May 30th - 31st. Why you may ask? Well that's what I'm here for.....

So there is this program, Medically Dependent Children's Program (MDCP). We have been working on the paperwork since we left the NICU and we all know a government program is a slow process no matter what it is. Ok here's a brief summary of the program.....You call get on the 'list' which has a three year waiting period. After that you fill out tons of paperwork and wait.......

A mother, a very smart mother, found out about a program that allows someone to take their elderly loved one out of a nursing home to care for them in their own home. The government then puts that elderly person on Medicaid, gives them respite care, any adaptive equipment needed and home modifications. She put her child in a nursing home and then brought the child home therefore qualifying her child for all the above resources. And there begins the MDCP and the loop hole which will allow Caleigh to have these resources until she is 18 years old.

You basically have to enter the nursing home on one day and check out the next calendar day. There are only 3 or 4 of these nursing homes in the area. Grandbury's nursing home wouldn't accept Caleigh because of her severity and their liability. So we went with Bridgeport out of necessity. It will be a long night for all of us, but it needs to be done. When we get back home we shouldn't have to worry about what our insurance will or won't pay anymore and we won't have to spend our days fighting with people over the phone........as much.

Caleigh is doing ok, we have had to back off on her feeds here lately. We were at 7 ml an hour and we are down to 4 ml. Her reflux has been really bad to the point that she doesn't really want her paci anymore. Retching, coughing and dry heaving all the time. We have asked our surgeon to look at Caleigh's fundoplication during the surgery to see if it has loosed up. She has actually started burping occasionally, which she shouldn't be able to do. We finally reached the 13 lb mark this week, whoa!

I'll let everyone know how the nursing home trip goes......

If anyone has questions about getting on the program please contact me and I can give you some contact info.

Happiness is..........

When Caleigh, after 9 months, started smiling & grinning. Not only smiles when being played with, but smiles because she recognizes her mommy! Little grins here and there, but they get bigger and more numerous each and every day! It just makes my heart melt......

Priceless.

Field Trip?

Yesterday was a great day! Nothing medical about it.....just a great day. Here's the point where I blog something that all those other 'normal' moms out there take lightly and that I have always dreamed of doing.....Caleigh has been holding her pacifier in by herself for longer periods of time. Yay!

So yesterday we decided to take Caleigh to the park and have a picnic. So we went to River Legacy Park in Arlington, they have a great pavilion hidden in the back and lots of walking trails. Very nice. Caleigh did great on her car ride there. Then we strapped her in the stroller and off we went. After the wonderful time at the park we had to stop at the pharmacy and pick up some of Caleigh's meds. Still doing great in the car seat....... And then, on a sudden, drastic, trail of a thought.......we decided to take Caleigh to Whole Foods to pick up a few groceries! 9 months old and Caleigh finally got to go into a grocery store. We strapped her into the baby bjorn and put her backpack and oxygen tank in the grocery cart and she did great. By this time Caleigh was really tired and she fussed some but then she caught on to the fact that 'hey this is a new place.' It went well, only two stupid comments the whole day. One was "what's premature?" The other one was "are all babies on oxygen?" I have to give the girl credit though she seemed very confused. Other than that we had a really successful day. Trust me....I didn't touch anything and by the time I got home I wanted a bath sooooo bad. Germs can take over your life and I'm glad that my anxiety was able to be put on the side yesterday so that we could have a nice family outing. Caleigh slept the whole way home and then some.

Then our 'real' life started over again with her TPN needing to be changed, feeding bag needing to be changed, medicines, bath time and CVL dressing change. Speaking of dressing change, this is where we change the tape and clean around Caleigh's central line every 7 days or as needed. This is a sterile procedure and very important to keep infection away. Up until the last two times we have always had issues with Caleigh cooperating during this. We usually have to restrain her arms so that she doesn't pull on anything and it is at least a 2 person job. Well I think Caleigh has finally gotten used to it! She stares at us and coos the whole time, doesn't even wiggle. We still put her arms under a blanket so that she doesn't grab anything, but this is just amazing to us! For those that have seen the old Caleigh with her dressing changes......wow.....you would be impressed, we are.

Green eyes?

Per our surgeon, we will be stopping the steroids on Sunday. Apparently when your on steroids before a surgery it inhibits your body from producing the adrenaline needed to heal and also causes a drop in blood pressure. Because of this little steroid dose Caleigh will be given a boost of adrenaline (which has a big fancy name) during surgery so that her blood pressure stays up and she can heal afterwards. Another lovely reality about our future hospital stay is the PICU. Caleigh will be in the ICU until she is stable enough to move to the regular floor. So I am praying for a nice quiet corner.

All in all, we had a wonderful day and I'm hoping for many many more to come!

Blue Light Special (Take 2)

16 days and counting...... June 5th Caleigh will have her 7th surgery. The surgery that we have been putting off since her last surgery didn't work. Caleigh was SO sick after the last surgery that everyone, including us, had been dreading the inevitable 7th.

So here's the run down on what we are planning to do:
-they will remove the stricture that is at the end of Caleigh's small intestine connecting to the colon.
-re-connect the small intestine to the colon.
-start the process of cutting away adhesions in her small intestine.
-'lay' all of the small intestine out, measure it, and either do the STEP procedure (this was the original plan for Caleigh's 6th surgery) on the dilated loops of bowel or do a tapering from the colon up through the dilated sections.
-remove old broviac (CVL line) because Caleigh has almost outgrown the one she has, and put a new one in.
-"Possible" gallbladder removal, because Caleigh has three small gallstones.
-"Possible" liver biopsy

hence the title 'Blue Light Special'

Our surgeon will be doing the procedures with another surgeon who has also operated on Caleigh. Caleigh is now a two surgeon kiddo. We love them both and put their hands in God's when it comes to Caleigh. On all accounts Caleigh is stronger, bigger, her seizures are considerably better and the real factor here is her liver health. With Caleigh's liver levels being completely normal her bleeding won't be what it was in December. We're praying for a event free surgery and speedy recovery that heals Caleigh's tummy troubles. We can only hope and pray and give it up above.

The next 16 days will be full of the normal daily routine for us, but we will be anticipating surgery with the butterflies of Christmas morning. Plus we will get to actually pack and be ready for this hospital stay, which will be at least 2-3 weeks long.

You can read HERE about Caleigh's 6th surgery on Dec. 13th.

Thanks to everyone that commented on my last post. I realize that we aren't alone. I did want to say a couple of more things about the unsolicited attention we get in public. First of all, I do want people to know about Caleigh and her situation because that could mean more awareness and a possible reason WHY Gastroschisis happens. I have a whole post in my head about this to be typed in the future. Questions promote Answers. If ANYONE that reads this blog has a question, ANY question, please don't hesitate to ask. Another thought was that people just don't know what to say. It's a 'sad' situation in their eyes and in general people stumble on their words when they just don't know how to respond. I don't see our family as 'sad.' We are blessed to have Caleigh and with everyday we love her more and more. She is our miracle and is the farthest thing from SAD. A Miracle.

L & Q's

There really isn't much to post until we see the surgeon tomorrow, but I had time to post about something that's been bothering me lately. Here it goes.....

The looks, the stares of pity and questions we receive when we take Caleigh out in public........

It gets to me, why? We really don't take her anywhere. The hospital, the doctors office and to the gardens that one time. In Pitt it was the same way in the hotel, the walk to and from the hospital. Why? It all starts with the pity stare and I can see it coming. I cringe and wait for the next step. Sometimes I don't make eye contact, sometimes I try an acknowledging smile. Either way the questions begin. How old is your baby? I feel like curling up in a ball because at this point I know that a long explanation of things awaits. When I say 9 mths........the look on their face is usually priceless...... "but she's so small" and then it's on..... I have to explain the prematurity, the tubes, the oxygen, the everything. Why does this bother me so? Maybe I feel like summarizing the past year of our lives to a complete stranger who doesn't really care, but just seems to be curious about 'the baby with tubes;' is a total waste of my time and Caleigh's. I journal here on the blog about our struggles and triumphs. Maybe I should just hand out cards with the blog's address and say here......read about our year!

Human curiosity is an amazing thing and I'm not one to say that I am above it because I'm not. If there is something or someone that is different I can tell you that I am interested. Before Caleigh, I would have been that person.....smiling lovingly at your baby and asking "how old?" Now that Caleigh is in our lives I look at people in a different light. I'm still interested but I have self control. I know how it feels to go somewhere and get asked by 5 different people the same question, and of course how it feels to get the sympathetic looks by everyone that walks by. I'm not saying this is how every parent of a special needs child feels, but this is how I feel at this moment. Maybe Caleigh's condition is still hard for me to talk about. Shocking.....I know. I'm able to write so much better than talking about it. I can explain the medical stuff like it is coming straight from a book. No problem. I can talk to family, friends and doctors about it. Still NO problem. But throw a complete stranger in the mix, and I feel like a fish out of water, uncomfortable when telling someone our story. Maybe they will judge us? Maybe they think we aren't doing a good job? When typing my posts, the thoughts are in my head. I go over them and over them as I type. With verbal words the thoughts seem to run together and my emotions get in the way. And then, all your left with is a babbling, blubbering mommy. I don't like the feeling, I don't like to talk about it...... ugh.

Maybe it's upsetting because I know that one day Caleigh will understand why people stare at her. Even if she doesn't have the tubes and lines anymore, there will be scars and differences. I don't want her to experience what we feel every time we leave the house. There will always be scars and curious people. Our job as Caleigh's parents is to fade those scars and build a beautiful, strong girl. Protecting our baby is a full time job no matter what it is that we are shielding her from.

If your still reading this, bless you, you are a devoted reader & friend.

So I guess what I am ultimately whining about here is that we don't need pity. We need strength and prayers..........

Hopefully, tomorrow's family outing will be a quite and peaceful one. Possibly without the looks or questions, but maybe tomorrow I will be more comfortable it.......maybe.

Edit: I had just published this post and was getting ready for bed when it hit me. I was taking Caleigh's blood pressure, giving her midnight meds, adding milk to her feeding pump, and putting her nasal canula back in her nose (she keeps pulling it out) when I realized that I am so uncomfortable with everything because this is new. New to us in every sense. We didn't grow up special needs. Eric and I grew up normal, as normal as small town Texas can get. You blend in and nothing stands out. In other words, I'm not used to being the one that everybody looks at as different. Being different is tough, but being different is a blessing.

Tidbits

Our little Angel.....

Not a lot to report here. No news is well....you know. We've been settling back in to daily life. Trying to get Caleigh on a daily nap schedule....trying. She's been doing great and her energy level has been up since Pitt adjusted the TPN. The best part of all is that Caleigh now weighs 12lbs. 11oz. It's amazing what a little tweaking of nutrition will do. We also started some steroids to slowly wean Caleigh off her oxygen. She is still on an 1/8 a liter of oxygen and we want her lungs to be stronger when she has her next surgery. The steroids are scheduled out over the next 4 wks and we have a oxygen saturation monitor at home now to monitor Caleigh while we are trying to wean her off.

On Mon. we started planting trees, bushes and flowers. Here's Caleigh.....helping her daddy plant trees in the backyard......

Caleigh has really been pushing up lately. We were laughing so hard because Caleigh's eyes were SO big. She was really excited. Caleigh's OT & PT has been going really well and she seems to be getting stronger. I got a bit sunburned while helping plant the trees.......That's what happens when a pale white girl goes out in the sun for the first time in a year!

Information from Pitt

We learned a lot about intestinal transplant while 'vacationing' in Pittsburgh this last week. Granted our vaca was limited to a two block radius and was spent indoors most of the time. Pitt was a nice city for what I saw of it. Here's what we were told by each team that we saw:

Neurology: Caleigh's PVL/CP isn't a problem when it comes to transplant. The transplant team wanted to be reassured that Caleigh's brain would be able to handle the difficult surgery. Neuro says 'all clear' from their point of view.
Pulmonology: They think we should try a steroid treatment to help get Caleigh off of the oxygen. The consensus is that Caleigh's lungs are ok to handle the surgery as well. I'm going to call our lung doctor tomorrow to ask about the steroids....

Cardiologist: We've never had to see a heart doctor before......until now.....Caleigh seems to have a PFO, a tiny pin like hole in the heart. This is entirely common, 1 in 3 people may have it and don't even know about it. The cardiologist didn't hear a murmur or anything like that. She says that the PFO isn't a problem and that the surgery to fix it is more of a risk than the actual condition is. Like we needed something else to add to our list.........seriously? As far as transplant, there shouldn't be any problem.
Gastroenterology: The GI doctor up in Pitt didn't really have much to say and didn't listen to us much either. He seemed preoccupied and frankly we weren't impressed.

Nutrition: They came and changed up a few things in Caleigh's TPN. Added vitamin K, Zinc and selenium. Also adjusted some of the numbers on other additives. TPN is a balancing act and I'm glad we got a second opinion.

Psychologist: Not for Caleigh, but for Eric and I. We each had to sit down with the program's psychologist and talk about our routine, feelings, support system etc. etc. She seems to think that we have a good grasp of things and I'm sure she will recommend that we are fine to go through with transplant.

Pediatric Surgery: This was the man to talk with. Surgery had the most info for us. Our surgeon, here at home, wanted us to go to Pitt for a second opinion before we jumped into another surgery since Caleigh and surgery don't mix well. When we got there and started the x-rays and tests they discovered that Caleigh's bowel is dilated like crazy above a small narrow area that connects to the colon. We already knew this....... So the plan is to have surgery, cut away the narrowing and either do the STEP procedure (the surgery we had planned on back in Dec.) or taper the dilated section of bowel. What ever looks best once they get in there. Also they are wanting a current liver biopsy to make sure Caleigh's amazing liver numbers (total bili .2) are true.

Now here's the decision......where do we have the surgery? Pitt tried to 'sell' us having surgery at their hospital stating that they have a whole intestinal care team to work with Caleigh during recovery. We made an appointment with our surgeon for next Monday to talk about the surgery. He's been in Caleigh's belly 6 times, he knows how she reacts to surgery, at Cook's we can stay with Caleigh in the ICU and in Pitt we can't stay with her, plus we would have to stay in Pitt for recovery time. Unless our surgeon is uncomfortable doing the procedure, the pros of having Caleigh's 7th surgery at home are winning the game. We'll see what he says......

Transplant Surgeon: Dr. George M. is the intestinal transplant surgeon at Pitt. Very nice man and listens very well. He seems to think that we need to try the surgery and he wants to know how the recovery goes after the said surgery. Then he will want to see us for a follow up evaluation about 2 months after. He asked if we were ready for transplant and I told him that if we got the call tomorrow, that we would have to pass because we haven't tried everything in our power to rehabilitate Caleigh's intestine. We also explained that we still have interest in being listed so that we can get some seniority in case we need to do transplant in the future.

Tomorrow, Monday the 12th, we will get a phone call from the transplant coordinator letting us know the teams final decision and suggestions. I'm anxious to hear what they have to say, but I think we already know what that will be.

So here are some facts about intestinal transplants.....

Intestine Transplant (in our mind) is a trade off. We wouldn't have a short gut baby anymore. We would have a transplant baby. Transplant isn't always the magic answer, but it does allow more 'time' to a critically ill child's life. Eric and I have decided that since Caleigh's liver is doing so well.....why rock the boat......Until her liver is on the brink of failure we are keeping transplant far in the back of our minds.

With the current treatment and drugs used the statistics only go out 5 years right now with a survival rate of about 80% after those 5 years. This is great compared to past methods and drugs used, but not knowing 10 yrs down the road statistics is hard to swallow.

Most children Caleigh's age get off of TPN within the first 6 weeks after transplant. All intestinal transplant patients have to take daily anti-rejection medication for the rest of their lives.

The oldest intestinal transplant patient to survive is now 19 years post transplant and doing fine.

There is only one intestinal transplant patient that has been pregnant and given birth in the world. No problems and her baby is now 2.

60% of all intestinal transplant patients reject their new organ. This is normal and if caught early enough the rejection can be stopped. Only 8% of patients have what is called chronic rejection and most of these patients end up having to remove their new organ and usually don't get another.

50% of the population doesn't even think about or are against organ and tissue donation.
20% of the organs that Pitt receives are from children who were in ATV accidents. 4-wheelers, motorcycles, etc. most of these children have suffered head traumas, but their organs are still viable. Another big percentage of childhood death is falling down stairs and asthma attacks. These children don't have brain function but their organs are usually unharmed. It's hard to 'give' your child's organs after a traumatic loss such as that. You know, until Caleigh, I didn't look at things in life a certain way. Compassion has taken over and I have a new love for many things, organizations and people, that in the past, would have never crossed my mind. Maybe because you are reading this, you might discover your own compassion for something new.

Make Organ Donation a priority in your life because you never know who's it might save. Not just intestine, but liver, heart, lungs, kidneys, bone marrow, tissue, cornea, stomach, pancreas and more. Think of how many lives one person can change with just one decision. If it is right for you, please register to be an organ donor and make sure your family knows of your decision. You can click above to learn more about organ donation.

Wrapping up......On the way home from Pitt, the plane ride was wonderful again. So much so, that as a family we slept the whole way home. What a nap! It was nice to finally get back home and to have this adventure behind us. So we move on to the next thing........whatever that may be.

Mother's Day

My first in fact. This time last year I knew I was an expected mother, but this year....this is my first. I've always wanted to be a mom. I wanted the 2.5 kids. From mothering my baby brother to working with children of all ages in schools, nurseries and daycares. I was one of those children, a girly girl, who had hundreds of dolls and stuffed animals and I could recite their every name. They were my babies and I was their mommy. Beyond playing house, I am now living the real thing.

When I had Caleigh and she was so teeny tiny, I was concerned that my motherhood would be cut short. I still have thoughts occasionally of our family's uncertainty, but I have learned so much about being a mother in the past 9 months. I've met wonderful mothers. Mothers of multiples, mothers that lost their children, and mothers that love the babies that someone did not. No matter what the circumstances, these strong women are mothers and will always be.

Motherhood, to me, has many meanings. Worry, joy, self-doubt, hope, guilt, dreams, heartache, patience and the most unimaginable feeling of love ever known. Motherhood is sleepless nights, napless days, crying with your baby and in our case smiling & laughing at Caleigh on a daily basis. These may be very different from your ideas of motherhood, but that's what makes each mommy special, the differences.

And then, I think about my mom on mother's day. How did she do it for so many years? How she must have felt with me at 9 months old. She always said "just wait till you have children." I now understand the joys and heartache of being a mother and my journey has just begun. All I can say is......... thank you and I love you mom.Mother's do it because they want to and because they need to.
Your not a mother once but a mother forever.
To all the mommies out there Happy Mother's Day!

We made it home and I'm working on a post with all the details.....coming soon.

Finally got some Web

You would think that if a family is planning to spend 6 possible months or more at a hospital and close to a million dollars, they would let that family have access to a blogspot address. The hospital restricts Caleigh's blog site as a possible 'bad' site. Ugh.

So I finally made it over to the hotel with the computer. First of all, Caleigh is doing as well as expected. Eric and I are beyond exhausted at this point. On Monday things started off with a bang only 30 min. after we arrived. An abdominal x-ray, blood work, and a heart, lung & abdomen echo. We met with the transplant team that came into the room looking like a bunch of white coat wearing sports team members. Picture Grey's Anatomy residents standing around a bed and that's what we had. I don't guess that I have ever experienced a teaching hospital before, but it's a bit overwhelming and reassuring at the same time. Monday and all day Tuesday we had a double room all to ourselves. It was great until we got a roommate..... Lets just say that they weren't a transplant family and they are so loud. I'm pretty sure they are the reason Eric and I are so tired. Caleigh can't sleep very well because of all the noise and we are ultimately hoping the family leaves tomorrow. The hospital is in the process of building a new facility, but until then quarters are tight and there isn't much room to spare.

So on to Tuesday, we met with the transplant team again, among many many others involved in the process. I sat through a 2 hr educational class about intestinal transplant with another mom who thought MS was a virus.....It's hard to believe that some of these parents aren't as serious as we are and haven't even tried to educate themselves about their child's future. It's just a tad bit frustrating. So the same day Caleigh went and had a barium enema contrast study. It showed the usual large dilated loops of bowel and at the end of the small bowel, right at the connection to her colon there is a narrowing or stricture. We knew this before coming up here but wanted a second opinion and so did our surgeon. We spoke with the pediatric surgeon and he made some surgical suggestions. So now we need to decide where to have the surgery to correct this problem. Pitt or Home?

Today, Wed., Caleigh had an ultrasound of all her major blood vessels. She did really well during the long look at things. Because of the barium enema the day before, Caleigh had over 20 liquid stools on Tuesday so she was visibly dehydrated. Her heart rate was up, lips were dry and her spit was thick. She was weak and had a high temp of 99.8 at one point. They started some iv fluids to help her out and within a few hours Caleigh seemed to be feeling a little bit better. We met with the neurology team today as well and they were nice but had no other suggestions. In fact some of the neuro's at Cooks came from up here at Pitt. Tonight they will do more blood work and because they have had to do so much blood work everyday they are going to check to see if Caleigh might need a blood transfusion. We'll find out tomorrow if this is the case. Also tomorrow we will take Caleigh to get an upper gi contrast study and that will be our last 'test' before the whole team meets and gives us their recommendation.

The team has also made some valuable changes to Caleigh's TPN. Hopefully, this will help further along her growth and keep her little body in balance.

We are tired, Caleigh is tired and we are ready to make it back home, but at the same time getting a different opinion is very valuable and I think worth the trip so far. I'm interested to hear what they have to say.

Hopefully, I will be able to get back over here to the hotel to post again before we leave. I apologize for the dismal post. I'm just feeling drained.......

We Made It!

In Pitt..... can you believe it? When we got on the plane, Eric and I looked at each other and said "I guess we are really going this time." Hard to believe but here we are sitting in our hotel room in Pennsylvania. Which might I add, is a lovely area. Older homes, very eclectic with a lot of history. Lots of rolling hills and beautiful trees. Daytime highs in the 70s and night time lows in the 40s.......quite nice.

Our plane ride was donated by a very...very...wonderfully, gracious family whom we can not say thank you enough to. A private plane, 3 person crew, the Gray's.....priceless. This was such a blessing. Having a short gut kid on a plane is a nightmare. Make that a commercial flight and you've got issues. Caleigh, herself did really well. She loved all the bouncing and jerking of the take off and landing. Mom didn't, but Caleigh did! Caleigh even took a nice long nap during the 2 and a half hour flight. There was a couple of crying spells, but not too bad. On the flip side of this, there's the short gut stuff. 3 dirty diaper changes, 1 g-button dressing change, 3 doses of medicine, 1 feeding pump cycle completed and the tons of equipment we had to take on board with us. I can't even imagine having to do all of that in a tiny coach seat. Plus don't even get me started on the possible germs......Like I said, a huge blessing. You know who you are.....THANK YOU!

So as I type we are spending the night together as a family in our hotel room. Tomorrow morning we will go to the Children's Hospital of Pittsburgh and they will admit Caleigh at 10am. She will be in the hospital, inpatient, until Friday at noon. Only one of us will be allowed to spend the night in the room with Caleigh. So the other will be at the hotel getting some quality sleep, maybe. During the next five days there will be meetings, procedures, tests and more meetings. All of this just to find out if Caleigh is a candidate for a small bowel transplant.

Hopefully, I can keep up with the blog during this week. Thank you for all the thoughts and prayers. We're praying that we get some answers to our questions and at least get a different perspective on things. Wish us Luck!