All Done, The End, Finished, Complete

Caleigh is officially off of all seizure medicine. No more Keppra. She took her last dose on Sunday night. We haven't seen anything dramatic in the last day. Meaning she hasn't had any seizure activity and she hasn't jumped up and said momma yet, but we will give her time on that last one!

These past 6 weeks have been incredible as far as development go. Just this past week Caleigh started repeating the letter G three times in a row. This is a great improvement in her speech. She has never repeated the same sound before. It's always different sounds all run together. So we are really excited when we hear her.

She has also started teething again. Eye teeth and whatever else is left over in that adorable mouth of hers. So instead of wiggling around the floor she is pretty much positioned on her tummy with her fists in her mouth. This is her interest right now. We are still trying to get her to move and she will occasionally, but until those teeth come in Caleigh will be hanging out in a puddle of spit.

Caleigh isn't really wanting to sit anymore either so I am hoping this improves with time. She was doing so well before her hospitalization. Her sitting really hasn't been the same since then. So we will continue to work on it.

This summer we decided to buy a little above ground pool for Caleigh. She has never been swimming before and has never had water above her waist level in the tub. I called around and all swimming lessons for special needs children are for 2 years and up. Since Caleigh will be 2 in August we decided that this summer would be about introducing her to the water.

We bought a cheap pool, we bought a saltwater pump, we got really excited....Caleigh....not so much. She hates it, she's scared of it and she softly cries while clinging to me the entire time. For someone who loves her bath time, and all running water, this was unexpected.

So after some searching and advice from some other moms, I ordered a neck float for Caleigh. This will leave her arms and legs free to kick and swim without letting her head go under. I had a lot of hope for this float and it does it's job wonderfully. The only thing is that Caleigh still doesn't like the water! Float or no float it's all the same. So I try to get her in the float and in the pool for at least 15-30 minutes a day. Maybe she will get used to it and not be scared. Maybe. I really hope so. It would be wonderful for her in the long run.

Here's the link to the float we got Caleigh: Waterway Babies It's wonderful for ALL kiddos....check it out!

Bugs!

Yesterday afternoon we were therapy and appointment free so we decided to take Caleigh to the Omni Imax Theater to see Bugs! It was a delightful film about bugs starring real bugs. Yep, that's what it said. We chose the Omni theater because of it's huge screen size, and loud sound system. Unlike a lot of children with special needs, Caleigh doesn't have the sound sensory issues. Actually with her, the louder the better. So technically this could be consider hypo-sensitive.

Anyone who has been to the Omni can attest to the first 5 minutes and the crazy helicopter ride over Fort Worth. At this point Caleigh decided she didn't want to watch anymore. I guess it was too much, a visual overload. So she pretty much stayed head down on my shoulder listening to the whole thing. Eric and I stared on, watching prang mantises eat the heads off flies and caterpillars turn into butterflies. The content was a little mature for our dear Caleigh, but as far as sounds go she was happy. She was flashing smiles between digging her head further into my shoulder. There were loud parts where I had to cover her ears, i.e. bats, but the majority of the time was tolerable. Caleigh had a few coughing reflux issues throughout the 40 minute film. I felt like we were interrupting every one's viewing pleasure. During the beginning announcements there was mention of a quiet room......we didn't search it out. Oh well, no one said anything....we were the family with the little girl, tube attached...who would say something? I did find myself trying to come up with a smarty pants fancy come back should anyone dare comment about our disruptions.

I think that I am such a germaphobe, that if I was in their place, not knowing Caleigh's situation, I would think she has a cold or something. So I don't want to be THAT mom that takes their kid everywhere even though they are sick and contagious, even though that is totally not the case. I really shouldn't care what others think. Should I? I've had the "oh, she has a cold, that stuff has really been going around, huh?" before and it made my head spin. Instead of going into medical mode, I simply said "nope, it's just allergies." The condescending mom gave me the look. I've felt stupid about my reaction ever since I said it....so next time I will be ready.

So besides Mommy's insecurities, I think Caleigh's first movie experience went very well. It really was fun to get out and do something as a family that didn't involve therapy or doctors. Plus, it wasn't such a bad place to be when the temperature outside was 104 degrees!

Blood, Shoes and Diapers

A lot of regular and basic stuff has been going on since I last posted. Caleigh continues to wiggle around and she is getting used to it. Not crying as much and more pleased when she actually gets to her destination. I'll have to get more video of it soon.

We went and did labs last Thursday. You know the old joke "How many people does it take to screw in a light bulb?" Well it seems it takes an army to draw blood from Caleigh. If they aren't intelligent lab people....it's takes a the whole country and their army! Needless to say they finally got the blood, but when we got the results the numbers were all crazy because it hemolyzed in the process of them drawing it. I got a frantic call at 9 o'clock at night from the GI on call making sure Caleigh was still alive. We will not be going back to that lab.

Friday we took Caleigh to the GI office. Everything including the dumping syndrome is looking good. All except the blood in her stool. We did an in office stool test...20 seconds later.....jackpot, blood in her stool. I swear it's really like going to Vegas everytime we do the test. Anyways, there could be a couple of reasons this is still happening. One being a food allergy that irritated her intestinal tract so bad that it still hasn't recovered. The other explanation is that the bacterial overgrowth still isn't under control. Caleigh is on a very hypoallergenic formula and hasn't had anything by mouth since leaving the hospital. We are still waiting on the allergy tests to come back as well. So we opted for the second theory and started a 2 week dose of Flagyl. Blood counts are good so no problems from losing the blood. We have a GI appt. scheduled for 2 weeks to re-check the stool.

Last week our PT suggested we get some hard soled shoes for Caleigh and preferably with an arch. This will hopefully help her toes relax and lay down with the feedback given by the sole of the shoe. So we loaded Caleigh up in the VAN (a whole other blog post to come) and went to the mall. We quickly learned that toddler size 3 shoes rarely have an arch. So we went through the whole mall sticking our fingers in itty bitty shoes looking for that illusive arch. Just when we had given up we came across these beauties, quickly snatched them and headed home. Caleigh has taken to wearing shoes wonderfully. No complaining at all. The weight of them seems to make her notice her feet and legs more. They don't stick straight out in a seated position while wearing them. She doesn't sport the new shoes all day but her big toe seems relaxed after wearing them a few hours. I think these are a good start. Caleigh will probably need AFO's in the future, but for right now this is progress.

K-Swiss with a little bling

Right before Caleigh went into the hospital we received a donation of over 1000 diapers from the DFW Charity Racing League. You may remember they have raised diapers for Caleigh before. Lord knows we need them! They are an amazing group of people who selflessly think of others and for that we are forever grateful. We really are humbled by such generosity. Thanks Guys!

I thought this picture was funny. She's trying to chew on the bag. Caleigh seems to be teething some more. There is ponds of spit everywhere. No joke we go through 3 cloth diapers a day just wiping it up. Her mouth is all over everything. It's crazy. I wish her teeth would just come in and be done. I promise not to complain when they all fall out and her permanent teeth start to emerge. Promise.

Jen's Twins

Please check out Jen's blog as I get more information on the girl's delivery.

Prayers for the Lamkin Family. We love you guys!

http://jenniferlamkin.blogspot.com/

Wiggle Crawler

She's moving folks! Caleigh has been doing the wiggle for a few weeks now. Of course it's not all smiles, giggles and happiness. Caleigh usually starts out with that look of determination in her eyes, but it quickly turns into crying and frustration. I'm pretty sure it's frustration. Who knows? All I care about is that she's moving and pretty darn good by the way!

We made our way to the infamous endocrinologist appointment yesterday. Our appointment was at 9:15 we weren't seen until 10:45. When we were seen basically we were told that since Caleigh isn't having the dumping syndrome symptoms right now that they really couldn't do anything for us. He didn't charge us for the visit and apologized for our wait and wasted time. So he was correct...the problem is under control. I left wondering if Caleigh would have to be on continuous feeds forever. Bolus feeds were causing the dumping syndrome. So where do we go from here?

Tomorrow we take Caleigh to do some more blood work. A renal panel, allergy testing and a vitamin D level. Then on Friday we have a follow up appointment with our GI doc to go over things and come up with a plan. The plan maybe to wait and keep doing what we are doing.

Speaking of allergies-- Our chiropractor did a muscle allergy test on Caleigh yesterday. It is an Eastern medicine practice. So some believe and others don't. You can google it if you want to. This is also to test for sensitivities not just allergies. Here's what she found:
Peanut
Carrot
Milk
Almond
Curry
Wheat
Now, these may just be sensitivities or they might be allergies. We are doing labs for allergies, so well see. I believe the carrot finding! Caleigh did horrible when we added carrots to her feeds. The milk finding is understandable too. Real or not, it gives us an idea of things to limit or stay away from. I thought that curry was funny....no India food for Caleigh, HA!

We weaned Caleigh's seizure med, Keppra down again this week. We only have 2 more weeks before she is completely off of it. Her progress is very noticeable to us. Babbling more, happy more, the wiggling, the sitting and Caleigh's head control is slowly getting wonderful.

With Caleigh's new skills I've been looking into communication devices. Basically we need to start with actually objects and a choice board. With Caleigh not being a big fan of food it's going to be difficult to get her motivated to choose things. From objects we will move to pictures. I've been told that she will learn all of this when she is 3 and starts school. I don't like that answer. I don't want to wait. Anyone out there have any suggestions or sources?

Things are staying busy with follow-up appointments and trying to catch up with therapy missed. Hopefully everything will settle into a routine soon.

Home

We are home and everyone in the Gray house is very excited about it. No more waking up at midnight and 4 am just to take Caleigh's temperature. No more waking Caleigh up for blood pressures and weight checks first thing in the morning. No more. We are home.



Right before we were discharged the biopsies came back from Caleigh's scope. What they found is a little confusing. Eric and I know Caleigh's insides well and to those that don't, well, it's confusing. In a nut shell what they thought was colon was actually small intestine. Which means that Caleigh has a lot less colon than what was previously thought. This contributes to the numerous liquid stools she has on a normal basis. The "fistula" in the colon, that turned out not to be a fistula, actually came back as small intestine. Are you still with me? This means that there is a narrowing in Caleigh's small intestine. This may or may not be causing any problems at this point. If you scroll down and look at the scope picture I posted; that hole that you see is only the size of a pen tip. This means that everything Caleigh eats has to make it through that hole. She could end up with an obstruction or blockage eventually. As of right now we are not going to do anything about this. We are going to store it in the back of our large Caleigh filing cabinet and come back to it when we need to.

Another thing that was noted was severe inflammation of the intestines. This could be from 3 things. Obstruction, Allergic Reaction, & Bacterial Overgrowth. All of which could be causing her bloody stools. Bacterial overgrowth is the main cause. In a week we are going to do lab work to check for allergens and electrolyte balances. Then we have a follow up appointment with our GI to get more of a plan down. We are back on the Elecare formula which doesn't have any milk products and Caleigh seems a lot happier on it. I think we are planning on staying away from dairy for a bit. Now that we are on the new feeding schedule she has only been having 3 stools a day. This is amazing compared to what we just came from. Going back on continuous feeds is a step back for us. It's hard to give up the progress that we have made. We will get back there. It will just take some time. It will happen.

Caleigh on her Rody
While visiting Kendall a few weeks back I saw this cool toy/therapy equipment at her house. I just had to get one for Caleigh. She really seems to like bouncing on it and it has been helping with her head control. Although, she likes to lean down and chew on it's ears!

We are so blessed to be back in our home so quickly. The past week was really a blur. Like it didn't really happen. We walked in the door to our house and acted like we had never left. It's strange which things become easy in this journey we are on. Maybe it was easy because it was a short visit. Maybe it was easy because there wasn't a surgery. Who knows? We have been working on getting things going again here at home. I've been doing lots of laundry and lots of scrubbing to get all things 'hospital' off of everything. I think I finally may be catching up now.

Good News

I'm officially retracting the Fistula post. Yippy! After the barium enema this morning, the radiologist, GI and surgeon all got together and decided that the hole that was found in the colon is actually a 'man made' hole causing no problems. It is one of Caleigh's reanastomosis sites from her June '08 surgery. They took a portion of the colon out and stitched the two sections back together. That is the 'hole' we are seeing.

We are still waiting on the biopsies and should get the results tomorrow. Caleigh is still on IV fluids for hydration. She has the IV in her neck and we hope to get rid of it tomorrow. Last night we started continuous feeds of 60ml an hour and then gave her bolus feeds during the day today. She seems to be tolerating this change well and slept through the night. No blood sugar issues so far with the new feeding schedule.

There is word on the street that Caleigh might be discharged tomorrow. Maybe.

I can't even began to express how happy we are about the change of plans. No surgery. We are loving it.

Thank you to everyone for your sweet words and prayers.

Fistula

Well, here we go again.

This morning they took us down to pre-op around 11:30am. Right before that we lost the IV access in Caleigh's arm. Eric and I convinced the nurse to wait on trying to find another spot because the anesthesiologist would be doing that anyways and Caleigh would be asleep. They did end up getting access after sticking her over 12 times. Unfortunately, the IV is now in her juggler on the left side of her neck. It looks painful and with as much movement as she does I'm not sure it will last long, but I'm hoping it does.

The procedure went well. Our doctor started out doing the endoscope, going in from the top and checking out Caleigh's fundoplacation. All looked well with it. Then he moved to the colonoscopy were he found what he believes is a fistula. You can see it in the pictures above. Yes, that is Caleigh's colon. Yes, she will probably kill me for putting up colon pictures some day! Each of the shots is of the hole or fistula. It is located about 37cm from the rectum.

"A fistula is an abnormal connection between an organ, vessel, or intestine and another structure. Fistulas are usually the result of injury or surgery. It can also result from infection or inflammation. Inflammatory bowel disease, such as ulcerative colitis or Crohn's disease, is an example of a disease that leads to fistulas between one loop of intestine and another."

We are waiting for biopsy results referring to these conditions, but other than the one spot everything looked fairly normal. The thought is that this fistula is connecting the small intestine to the colon. When food passes through the small intestine at this site it releases a large portion of food through the hole and straight into the colon cause the dumping syndrome. It is bi-passing a large portion of Caleigh's small intestine.

So tomorrow we are taking Caleigh down for a barium enema. The other day we looked from above with barium and this time we will look from below. We will also meet with our surgeon tomorrow. Caleigh will have to have another surgery to correct this problem. We aren't sure when yet, but soon is probably a good guess.

We went ahead and did an ABR hearing test. This is done under anesthesia so they tagged along at the end of the scopes. What they found is that Caleigh is hearing normal and high pitches well but that her left ear could be missing low pitches if they aren't loud enough. This is not a severe hearing loss. We are going to schedule another ABR and an awake testing procedure as well. The audiologist told us that they usually do 2-3 tests before they can make a solid diagnosis. Caleigh understands us. She hears us. We may just need to tweak a few things so that she can hear every pitch.

Tomorrow should be interesting with the enema and meeting with our surgeon. I am trying to Tweet as much as possible, but I don't think I am as committed as some are. I'll try to get a little more consistent during this hospital stay, but no promises when we get home. Things tend to be boring and you don't want to read about what we had for dinner and what junk mail I got that day......stupid things like that! For now I will try my best.

Making Changes

Things are calm at the hospital. We're waiting to see our doctor this morning. Yesterday he made some changes. We started full strength 20 calorie Elecare formula at 120ml each feed. Now we are back on our home feeding schedule of every 4 hours. Caleigh is now officially on a diet. She was getting 1100 calories per 24 hours and now she will be getting 800. We are going to stay on the 20 calorie formula and keep the volume that she was getting the same for her fluid requirements. They are still adding 1 tablespoon of cornstarch to each feed and so far it seems to be helping Caleigh regulate her bloodsugar and it seems to be helping her not stool out what is being fed in. He also lowered her IV fluids.



Today were hoping to raise the volume she is being fed and to also get rid of the IV in her arm. Caleigh is drooling buckets so she is plenty hydrated at this point. Plus her IV has been in her arm for 5 days. This is crazy unheard of with Caleigh. Yesterday it started to get occluded and we had to flush it a couple of times. So I'm thinking we really only have one day left with it.



I'm going to have to double check but I think Caleigh will go for her endoscope tomorrow. This means anesthesia and another IV placed. Then the plan so far is to send us home on Wednesday. I won't believe it until I see it though.



Last night Eric and I got Caleigh to sleep and decided to rent a movie on i-tunes....after getting some food in the cafeteria and settling down I clicked the download button. Little did I know that with the hospital internet connection we would have to wait 12 hours for the download to watch our movie! We had a good laugh and then went to sleep.

Update

Things are doing better as I type. Better being a relative term here. When we brought her to the ER almost 4 days ago she was pale, lips, hands and feet were blue and Caleigh's beautiful hazel eyes were severely crossed. Not to mention she was impressing everyone with the size of her belly. It was large and hard at the time.

Today her color is back to normal. Her lips, hands and feet are properly pink and her eyes seem to be on the right track. They still wonder but vision is the first thing to be affected when your tired.

Our GI doctor is on call this week and that is a blessing in itself. He understands Caleigh and knows her front and back. It's comforting to have someone like that around.

We took Caleigh for the upper GI yesterday and she did well. It's a totally different ball game with an older Caleigh. She's fairly easy to distract and doesn't get as upset as she used to. Between scans I would pick her up and dance and sing to the music they had playing. She would smile and giggle, but the moment I put her back on the table she would get mad and cry. We know the radiologist by name and have probably paid for his car at this point. So it's a really relaxing thing to have him in the room telling us all about what we are seeing as it's happening. He thinks that she looks better than the last time he saw her (July 08 post STEP procedure). Back then it took a whole 10 minutes for the barium to pass through Caleigh. Yesterday it took 30 minutes which is an improvement, but you and I take anywhere from 12-72 hours for complete digestion. Below you can see Caleigh 'guts'

The white loops that you see are Caleigh's stomach, intestines and colon filled with barium. Her insides are a jumbled mess if you compare to the image I found on the web below.

The one below is a pediatric patient but probably around 7-10 years old. The main thing I wanted everyone to see is the perfect loops of bowel and just how much there really is supposed to be.

Here's an analogy for ya...You and I have a tennis court of small intestines and Caleigh has a ping pong table.

So there was no blockage not even a partial obstruction. We now have our answers as to what is going on. My theory which was confirmed through our doctor goes a little something like this....

About 3 weeks ago we ran out of oreganol oil and while waiting to get more Caleigh went about 5 days without it. The oreganol oil, a natural anti-fungal, has kept any bacterial overgrowth from developing since last August when we started it. It's good for maintaining a balance but not for getting rid of bacteria. About a week or so later Caleigh developed an ear infection. We started amoxicillin. Antibiotics kill off any good bacteria that you have in your system. So the oreganol oil, and the probiotics that we give Caleigh had no chance. Because she was off the oil for those few days the bacteria probably started building up and as soon as the antibiotic was started everything went down hill from there. When you have bacterial overgrowth it causes severe diarrhea and can cause bloody stools. So she started dumping and stooled herself to dehydration. Meanwhile her intestines shut down due to the stress on her body, causing the dark green bile, large abdomin and leaky button. So here we are.

Caleigh has been NPO (no food by mouth or button) for the last 4 days. Her residuals have cleared up and her stomach is back to a normal size. Today we started giving her half strength Elecare with 1 tbs. cornstarch to help slow things down. Because she is dumping and things are just shooting through we want to slow the process down. Today we started with feeds every 6 hours and tomorrow we will probably move to every 4 depending on how she does. The cornstarch did help the digestive time by about an hour or so. At 6:30 tonight we gave Caleigh her meds. 15 minutes later she started stooling and didn't stop for an hour. We probably went through about 14 diapers just in that hour. That is the usual senario. I'm hoping to be able to give her meds with feeds tomorrow to try and prevent that from happening. Due to the blood in her stool, I'm pretty sure we are going to do the scope while Caleigh is here. That way they can look at the lining of the intestines and see if anything funny is going on. That might happen on Monday or Tuesday.

Endocrinology is supposed to come by tomorrow so that we can discuss the blood sugar thing. I brought up the fact that maybe since the formula she is on is elemental and easily absorbed that she is actually absorbing too fast causing the sugars to spike. We'll see what they say.

Another interesting fact that we learned yesterday is that retching can be caused by slow emptying of the stomach (this we knew) AND rapid emptying of the stomach. Caleigh definitely has the later and it makes a lot of sense. Even as far as the timing of her retching.

Caleigh has lost her voice and is incredibly hoarse from all the crying she did. It's very sad sounding.

Tomorrow should be a calm day. Hopefully.

Admitted to Cook's

Caleigh is now admitted to Cooks after a very long night at home and a very long day in the emergency room. Last night she cried and cried. She was obviously in pain. Her stools were one after another and her dehydration was getting worse by the hour. At 5 am, after hours of pedialyte wasn't working, we decided to pack up and head to the hospital. We called GI and told them we were on our way. We got to the ER about 6:30 and preceded to wait for a doctor. After the doctor saw us, the nurses, who probably went out back and drew straws, tried to get an IV on Caleigh. One man finally got one and they started re-hydrating her with fluids. Then the wait was on for a room. By about 4pm we were settled in our room. Caleigh was still in horrible pain crying and screaming. The GI on call came by and we discussed everything that has been going on lately. There are a few theories. One being a partial bowel obstruction. Two severe bacterial overgrowth that was thrown into high gear by the antibiotic for the ear infection. I'm personally hoping for theory #2.

Tonight they have done more labwork and cultures. There is still blood in the stool but all tests for c. diff, parasites and bacteria have come back normal. This means Caleigh will probably be getting a scope while we are here. They did an x-ray of her abdomin tonight and we will be doing a barium upper GI in the morning. There is talk of a gastric emptying study as well to narrow down the blood sugar issue. The endocrinologist is now going to come and see us after all my hard work of getting a quick appointment. Looks like it worked. Caleigh isn't being fed right now and we have her button to gavity. As soon as we put it to gravity, out came some nice dark green bile. Not a good sign and one that we had hoped we would never see again.

I'm at home about to do some laundry and then get some sleep. Eric is being the trooper tonight and staying with Caleigh. I hope they sleep well.

As far as help.... honestly we are all for it. We are utterly exhausted. We haven't slept at this point in over 24 hours. After 22 months of this, I've given up on 'doing' it all by ourselves. Vistors are welcome and meals would be wonderful. The days fly by at the hospital and at the end you wonder what you ate or drank and if it was any good for you. My awesome brother took KoKo to his house. So our house and dog are under control. Thanks to everyone that asked.

I'm hoping this is a short stay but we are looking at at least a week. Please keep us in your prayers and for Caleigh to have some comfort from her pain.

I've taken to this Twitter thing. So you can get updates on Caleigh's day through my Twitter or by following on the left hand side of this blog.

No Change Really

I'm in a general state of frustration at this point. We've really gotten no where and I just feel helpless.

Caleigh's yeast rash is 90% better. She's left with a few raw spots and a regular diaper rash which she doesn't seem to mind. I'm glad it is better. I was almost at a breaking point. I think the anti-fungal really kicked in and did it's job.

Caleigh still continues to have stools constantly. Liquid, nothing to them. They have an acid smell to them. I believe this new smell is the antibiotic running straight through her. The plan is to call our pedi tomorrow to see if we can get a different antibiotic. The amoxicillin is tearing her up and we have until Saturday for it to do it's thing and get rid of her ear infection.

I'm not sure if we will be able to sort the blood sugar thing out until she feels better from the antibiotic and ear infection. There are just too many variables at this point.

After a little research, Eric and I decided to try Caleigh back on the Peptamen Jr starting Sunday morning. Her blood sugar symptoms seemed to get worse with the Elecare so we thought we would give it a try. On the Elecare her glucose would spike in the high 200's almost 300 and on the Peptamen the number was right around 200. She is still having the lethargic symptoms but not as bad as she was with the Elecare. I talked to our dietitian today and she is going to research a little about what is going on and then talk to our GI. We are also going to get an order of Peptamen Jr unflavored. Right now we have Peptamen Jr. vanilla with Prebio. So maybe she will do better with the plain Peptamen. In general I like Elecare better, but I'm worried about the sugar. Caleigh seems irritable and gassy on the Peptamen Jr. She seems to tolerate the Elecare better except for the glucose issues. Today, on the Peptamen she was cranky, floppy, and wanted to be held constantly. Like everything, it's just going to be trail and error......which I hate.

I've called the endocrinologist office about getting an appointment sooner and I'm waiting to hear back from someone. I plan on calling them a lot tomorrow. Not calling me back is NOT an option.

I'm frustrated and want answers. I want to fix it.