The Chair

On the 27th of January Caleigh received her very first Wheelchair or Adaptive Stroller, which ever you prefer. I find myself calling it her wheelchair and I'm ok with that. Eric and I were very excited to finally get it. We ordered it about 5 months ago. It went back and forth through insurance and Caleigh's Medicaid and finally got approval.

A wheelchair is supposed to be an emotional thing, but overall it's just another chair. After waiting and waiting for the darn thing to come in I've already gone through the emotions of it. I'm over it and ready to explore and go, go, go!

Caleigh sits up wonderfully in it. She is supported. We are playing around with the tilt of the seat and trying out the different chest harnesses that it came with. We are also waiting on a piece that will make the tray easier to adjust.

Look out world....here comes Caleigh!

Emotional Denial

Caleigh is feeling better. Eric and I have caught up on some sleep.

Reality is sinking in.

I'm emotionally exhausted. When we went into the ER last week and they ended up starting Caleigh on TPN, my thoughts were that this would only take a day or two to come off of it. The next day she had a central line placed. More permanent, but I told myself she would only need it for a little while. Denial.

On the way home from the hospital I was ok with TPN. You can't just be half hearted about such a thing. It's a life and death matter and going in only half way just doesn't cut it. So Eric and I talked and we decided we were 'in' whether we wanted to be or not. It's just TPN and we've done it before.....no biggie.

The quick acceptance of TPN and a central line was basically a good cover up for my complete denial of the impending necessary surgery. I had totally convinced myself that we could do what we are doing for a very very long time before having to do the surgery. I had that mentality until we went to our GI appointment yesterday. His thoughts are "why delay the inevitable" "why risk line infections and liver damage when the surgery could get Caleigh off the TPN again." He makes a good point. He was there, he knows just how sick Caleigh gets with surgery. She almost died. Her extremities were black. She bled out four times her volume during surgery. They turned the PICU into an OR. It was bad. He also understands our rational fear of another surgery and is ok with trying to get her feeds back up again, but he made it clear that he is for the surgery.

Basically I am totally traumatized. I guess I didn't realize how much Caleigh's 9 bowel surgeries have changed me. Ever since the first utter of re-stepping Caleigh's intestines I have had many nightmares of her dieing. I've been checking on her breathing more than normal. I'm a nervous wreck. I'm not handling her crying well. I'm scared to death about the whole thing. I think I've met my emotional quota here. Children shouldn't have to go through this and their parents should not have to stand by just to watch helplessly. The saying "Life isn't Fair" is an extreme understatement.

The surgery will have to happen, but just when is the question. I don't think Eric and I will be ready at any point, but maybe we will find enough peace to make the decision.

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The biopsies came back from the scopes and the allergy reaction that had shown up last time was gone. This means that the Elecare Caleigh has been on has helped. Basically she is allergic to food, but we already knew that. My hopes for tolerating real food is all gone now. Getting her to tolerate Elecare is the new priority. There was blunting of the villi which is usually connected to Celiac diesease, but the biopsy showed it to be non-specific which means that it probably isn't Celiac. Most likely damage from the bacterial overgrowth. Blunting or shortening of the villi isn't a good thing. To try and heal the villi this morning we started trophic feedings. Trophic means that we are basically just keeping the intestines open and working with a very small continuous feed. If you don't use it you lose it. Half pedialyte, Half Elecare at 5ml an hour. That's a teaspoon of formula an hour. It's nothing, but we will slowly go up from there.

So much has happened in the last week and each needs it's own post, but I'm not sure I will get to it all. So here's a small run down.....

Caleigh got her Wheelchair....

We went to the Eye Doctor....

We missed a Dentist appointment....

We talked to one of our surgeons on Thursday before he repaired Caleigh's central line.....

We go to see our other surgeon on February 10th....

We are over our head in paperwork......

Caleigh's playroom is almost done.....

We started a Listening Program......

We've decided to take a break from speech therapy......

Today Eric and I are going to relax at home with Caleigh. Enjoy the moments at home and try not to stress over the future.

Home Before the Rain

We just made it home before the rain really started coming down this afternoon.

Caleigh has a new and improved central line with many many many stitches and knots holding it in place. Hoping this helps it stay put.

Thank you to everyone for your support. We couldn't do this without you......

A New Line it is

So yesterday at 1 we unhooked Caleigh's TPN. Everything looked fine. We gave her a bath and changed her dressing. Everything looked fine. We hooked up her TPN at 5pm. Everything looked fine. At 6pm she started to cry while on the floor. I picked her up and started to look at her line. There was a huge knot on her chest. We stopped her TPN, grabbed a couple of bags and headed to the hospital.

We only spent 8 hours in the ER this time around.

They took us down to run contrast through her line just to see what was going on. Everyone in the room kept talking about how they never do this at night and how they weren't used to it. Eric and I were freaking out about cleanliness and sterile practices. They all had a deer in the headlights look. They actually asked us to leave the room while they did it, but we told them no. Good thing because the nurse really had no clue. Eric ended up stepping in and doing everything. The radiologist took the syringe of contrast and pushed it himself. I don't think he was happy with the nurse.

The contrast study showed that the line was out of the heart and had backed up the vein. So we went back to our cubby hole in the ER and preceded to get a peripheral IV going so that Caleigh could get fluids. They got it on the first try.

We made it to a room by 2am. Eric and I did another dressing change, gave Caleigh her meds and then we all got tucked in for sleep around 3am.

This morning Caleigh got up about 9:30. So she actually got some pretty good sleep. We had to keep telling the people that do vitals to go away, but other than that things were quiet. Right after she woke up we got ready to go down to get another line placed.

It's 11am and Eric and I are sitting in the waiting room while Caleigh is back in surgery. They really don't know what happened with the line. The thought is that Caleigh's neck movements are ratcheting the line out little by little. That's the only thing they can come up with because it was really tied in there. It wasn't pulled on so who knows?

From what we understand if everything goes well we might be going home today. That would be perfect if it worked out that way. Maybe.

And back again

We are back in the ER with Caleigh this evening. Her central line looks like it has been displaced. No fever, so hopefully there isn't an infection. We are waiting on more tests. Maybe a contrast study of the line. I'm 99% sure well be admitted tonight. One week since we went in. 5 days home....ugh. I'll update more when we get to a room.

Settling in with TPN

On Friday our GI asked when we wanted to go home. I said "today" and he laughed uncontrollably even bending over to do so.....and then said "ok I'll get the orders ready." So one day after getting a central line and a year and a half since we've even touched TPN we were on our way. It's nice to know that our doctors believe in us and our decisions. It's nice to have that support.

The past few days at home have been tough. Yesterday more so than today.

The first night we were home Caleigh did fairly well. We were up and down probably 6 times changing dirty diapers, but in general it was nice to be back in our own bed.

Last night was just terrible. Caleigh screamed, cried and arched her back stiff as a board for hours. She was obviously in pain. I started reading more about scopes and found out that you can have pain from the procedure for up to a week after. Mainly from trapped air. Caleigh also has an incision on her neck where they used a subcutaneous (close to the surface) vein to tunnel her central line. They went closer to the surface because her clotting numbers were elevated and they didn't want to chance her bleeding with a major vein. So she's got a pretty good bruise all the way down her chest. Caleigh's chest also hurts because the central line is brought out to the surface there. To top it all off we are counting 6 teeth that are trying to come in. She just wants to chew chew bite bite and get some relief.

Eventually, she fell asleep on top of me in our bed. We were up and down with dirty diapers, but the screaming was better. Caleigh got some sleep. Mommy & Daddy got none.

We did try Tylenol with no avail, but with TPN & Lipids in our life we will have to stop giving it to her. Both are bad for the liver.

Motrin will only make Caleigh's ulcers worse.

We gave homeopathic teething tablets as well. Nothing seemed to help.

Do you think I can teach her meditation? Yoga? Ugh.

Today we didn't give the antibiotic for bacterial overgrowth that we have been. It's called Alinia and I'm pretty sure it was causing the diarrhea and some of the pain. Actually, I'm pretty sure it's what sent Caleigh's diarrhea into over drive on Tuesday night landing us in the ER. We had only started it the night before. Caleigh has only stooled 3 times today and that is just amazing compared to what it has been.

We continued the new ulcerative colitis medicine, Sulfasalazine. We are supposed to give it 4 times a day by g-button. We just started it yesterday so we haven't seen any results as of yet.

Tonight she is sleeping well so far.

So we have spent the weekend trying to keep Caleigh comfortable while organizing all the supplies connected to the central line.

Both sets of grandparents came out to help get things started and as of tonight I think the supplies are close to being in their place. Organization is key to a good clean environment and that's exactly what we are going for.

We have an appointment with GI on Friday and an appointment with our surgeon on February 10th to talk about our options.

We'll spend this week getting back into the swing of things.

There's a lot to think about and a lot to do in the coming weeks.

Eric and I want to thank everyone for you thoughts, prayers, calls, emails, texts, comments and visits. It means so much to us.

Home

We're HOME for now. We got in last night. I'll update more this evening.

Thank you to everyone's for your thoughts and prayers.

Day 3 Scope Results

I didn't get to update last night because Caleigh was up screaming, crying and arching until 3:30am. We finally got the right dose of morphine going and she fell asleep. We did too...no morphine needed.

Caleigh's surgery went well. She now has her 4th broviac (central line, CVL) in and running. The pre-procedure labs indicated that she wasn't clotting fast enough so they took precautions for that and everything worked out ok. This is due to a malabsorbtion of Vitamin K.

The scope showed us a lot of information.

Caleigh has:

- 1 Ulcer and probably more that they couldn't get to with the scope

- A Hiatal Hernia

- Inflammatory Response (small bumps throughout the intestine)
The cause is pending biopsy, but probably bacteria

- Several very small narrowings in between large loops of bowel

- Caleigh's Villi bleed when touched with the scope due to irritation

- There is a small "dimple" protruding from the side of her esophagus

- There are a specific type of vein located close to a narrowing that needs to be removed. They are common with Gastroschisis, but are prone to bleeding.

Caleigh's stomach is very small

- We all have a Pylorus Sphincter in between the stomach and small intestine. This valve slows down the food leaving the stomach. Caleigh's isn't there anymore. The previous scope showed a very delayed valve and now it's unrecognizable. This means that she will never tolerate bolus feeds. She will have to continue on drip feeds. This isn't something surgery can fix.

- The surgeon believes that the discoloration on Caleigh tummy is a possible incisional hernia. This is the least of our worries at this point.

We are still waiting to see our surgeon to talk about options. He has a big surgery this morning so we won't see him until this afternoon.

Our GI feels like she needs another STEP procedure and fix the things that need/can be fixed. Just when is the question. At this point it's not an emergency type of thing. The TPN will give her the nutrition she needs. So I think Eric and I have decided to take her home to get settled in with all the TPN stuff and then schedule something. We also need to get her clotting factor back to normal before they do anything. We'll see what the surgeon says today.

I'm not sure when we will be able to go home at this point.

The last STEP procedure had us in the hospital for a month. Something none of us are looking forward too.

Thursday Surgery

It's 1:32pm and Caleigh is under anesthesia and getting ready for surgery. Eric and I are in the waiting room. A room I had hoped not to see again.

We went and did the contrast study this morning and it really didn't show much. The contrast made it through within 30 minutes. Normally on an empty belly it is about an hour and a half for regular kids. There were many large loops of dilated bowel and that's something that isn't abnormal for Caleigh.

Between our surgeon and GI doc they decided that Caleigh needs a permanent central line. So right now they are placing a new central line and then they will do a scope from the top and a scope from the bottom to see if anything has changed. They will also do biopsies at that time.

There is still more talk about re-stepping Caleigh's bowel, but it is something that our surgeon is not taking lightly. He doesn't want to jump just yet.

The TPN will give us time to decide what is best for Caleigh's bowel.

Along with TPN and a CVL comes all the things that we never wanted to think of again. Blood infections, hospitalizations, weekly blood draws, mixing the large bags of TPN every night, liver function and the all too familiar yellow kid, flushing the line, becoming the sterile procedure parents and not caring who we piss off in the process, dressing changes and the fear of getting the line wet.

I'm going to try to take a different approach this time around. Life as we know it isn't over. We are still working on my 2010 To Do List and this will not hinder that. We will have a life. Caleigh will have a life.

I'll update more tonight hopefully we will have more of a plan by then.

Hospital Night #2

We finally made it to a room about 12:30 this afternoon after 14 hours in the ER. Caleigh still doesn't feel well. She's clingy and fussy, but I would be too if I hadn't eaten in a week and my belly was the size of Buddha.

Our GI came by and we talked plans. They will draw labs again in the morning. Tomorrow morning we will be going down for an upper GI contrast study with a small bowel follow through. On Friday morning Caleigh may have another scope depending on what the contrast study reveals.

The weird red mark on Caleigh's tummy has turned a darker shade of grey/blue and our GI thinks it's a hernia. We will see our surgeon tomorrow to get his opinion too. The area looks a lot better since we stopped Caleigh's feeds. The distention has gone down too.

Caleigh doesn't have blood in her stool as of this evening. The reason being that she hasn't had anything to eat so the irritation has calmed down. The problem is that even though we stopped feeds and pedialyte she continues to stool almost every hour.

Unfortunately, Caleigh hasn't had anything substantial to eat in a week. So it was decided that she needs TPN. They are giving it through a peripheral IV for now and we are watching her arm closely. TPN is very hard on the veins so this won't be our solution to the problem, but it will buy us time for the tests over the next 2 days. Most likely Caleigh will have to have another central line placed, but at this point I don't even want to think about that. November 7, 2008 was the last time Caleigh had TPN running and December 30, 2008 was the day we had her central line removed. I'm completely overwhelmed with the thought of it being back in our lives.

I have to admit that I got a very sick and nauseous feeling when they hung that yellow and white bag and then hooked it up to my little girl. The last year has been amazing without it. I don't know if I can live with TPN again.

Today there was talk of another STEP procedure. There was talk of a partial obstruction. Surgery. Until we do the tests we don't know, but all the "what if's" paired with total exhaustion is enough to send anyone over the edge.

Please send out some prayers that this is just some regular bacterial overgrowth mixed in with colitis and Caleigh just needed some gut rest. We want to make it home TPN and surgery free.

Hanging out in the ER

Last night we decided to go ahead and take Caleigh into the ER. We got here about 10pm and they took us right back. This is a good thing because RSV had a major outbreak last week and the wait time in the ER was over 6 hours long. We are still in the ER, but we have our own little room. The hospital is full so now we wait on a room.

They got Caleigh's IV and blood work on the first try and she's been getting fluid since 11pm. We stopped her pedialyte at that time too, but that hasn't stopped her stooling. The weird spot on her stomach is still there. We went and did an x-ray and nothing showed up abnormal. We'll wait on surgery and GI to come see us. We had the option of taking Caleigh home after lots of fluid, but we decided to stay. She hasn't eaten in one week and there is just too much going on to ignore it.

We got a few cat naps during the night but not much. I'm hoping we can get to a room and get some rest soon. I'll update more when I know more.

The Spot

This morning I canceled all of Caleigh's therapies for the day and we preceded to lay low. She continues to have diarrhea off and on. We are still only giving her pedialyte.

I talked with GI and then made a call to our surgeon. We have an appointment tomorrow at 2:45 to see him. Here's what Caleigh's belly looks like this evening.

You can see the discoloration on the left side of the picture. The color of this photo doesn't really do it justice. It's more of a red, almost bruised color.

There is talk about it being an abscess or hernia, but I guess we will find out tomorrow.

Caleigh just doesn't feel good. I've held her most of the day and she seems to be crying at the drop of a hat. Hopefully we'll get more answers.

Walking the line

Caleigh got better with my last post but quickly turned a corner again. During the early morning hours of Saturday I had to stop feeds again and start up the pedialyte boluses. She was extremely dehydrated from the diarrhea and her poor bottom was all broken down. The liquid stool just wouldn't stop and once again I was wondering if I should take her in.

I gave her imodium and tylenol and she fell asleep in between diaper changes. We spent the morning on the couch with the curtains closed. Eric was working overtime and my mom came over with supplies to keep us afloat. By that evening Caleigh seemed better and we actually got some sleep last night. I went to bed as soon as she did at 7:30 and we only got up once around 2am.

This morning she didn't feel great, but the stooling had slowed down. As I was changing her diaper I noticed a red circle type mark on her belly. I thought maybe she slept on something funny and decided to watch it. About an hour later I gave her a bath and the mark still wasn't gone.

We went to the GI docs office to pick up samples of a new antibiotic that we are starting tonight. Apparently it's hard to get insurance to approve it so we just went to get samples so we could start it up sooner rather than later. Our GI wasn't there but we had his nurse check out the spot. She called the GI and he just told us to watch it. It's 6pm and it's still there. It runs across her scar and it's pretty large. I don't know what to think of it, but it's worrisome. Maybe a hernia, maybe a perforation. She's not running fever, but she will not let us put her on her belly. Caleigh's in a good mood, somethings wrong. We'll just watch it, but I'm not sure how long I can do that.

So things aren't great. Hopefully this new antibiotic will help some. At least she is tolerating pedialyte and she's staying very well hydrated. We need to be able to feed Caleigh though and right now she just isn't having it.

I'll try to update more tomorrow. I've also changed up the comments section. All comments will have to be approved by me before they go up. I guess this blog has been around long enough that the spammers have found it. There's been a lot of trash in the last week or so and even on really old posts. So to keep it clean I've switched up the process a bit.

Narrowly Diverted

The past few days have been full of bloody stool. A LOT of bloody stool. At one point I was sure I was about to take the leap and head to the hospital, but Caleigh fell back asleep (3am) and her blood pressure & heart rate got a tiny bit better.

By the morning her hydration was ok and she actually had a wet diaper. As soon as the stooling started I turned off her feeds, gave Imodium and started pedialyte. It's funny that Caleigh can not tolerate a bolus of formula, but pedialyte she can. I gave 3 boluses of 250ml over three hours. It's just bizarre that she can't handle more than 70ml an hour of Elecare. I know Elecare is thicker but it's just weird to me. After the boluses she was feeling better, but still stooling like crazy.

She has the typical coffee ground stool. It's dark blood which means it's not an active bleed. Colitis and Bacterial Overgrowth again. It seems that once a month to every two months Caleigh goes through this cycle again.

We already had a GI appointment, so what was supposed to be an appointment bragging about the success of the last month turned into a "guess what's wrong with Caleigh" appointment. We decided to completely drop the the Nexium that we had been weaning her off of. She was only getting it once every three days at this point anyways. We also decided to do another round of antibiotics for bacterial overgrowth as well as starting a different (VSL#3) probiotic for rotation purposes.

As of this morning Caleigh is on half strength formula. 50ml an hour for 24 hours. She is still stooling a lot (3-4 times an hour) but it has slowed down since it started a few days ago. It has turned a lighter shade and the dark blood has passed. She already seems to be feel better with the changes.

A few things could have caused this episode but I guess we will never know.

We have been going up on her volume by 5ml every two weeks. Two days before this episode we went up to 80ml an hour. This leaves her stomach off of feeds longer during the day which in theory could make the bacterial sit and brew longer. (I secretly think this is the reason)

We have been weaning off of the Nexium. Acid reducers cause bacterial overgrowth. While weaning I'm sure her stomach acid is all messed up causing the colitis to act up.

I really don't want it to be this, but the Slippery Elm Bark might be backing things up enough to let the bacteria sit in the intestines too long. Caleigh has been on the SLB for a month now.

So far so good though. Back to square one again. We managed to keep her hydrated and out of the hospital this time around. It seems to be getting a little easier to control from home each time.

Off to change another diaper!

Dystonia

After making a trip to the Spasticity Clinic at our Neurologists' office, Caleigh has a new diagnosis.

Generalized Dystonia

Before you go Google it (bad idea, by the way), let me back up a bit. We've been to the same clinic about a year ago where Caleigh was diagnosed as Hypotonic. Meaning - weakness, floppy or no tone. As kids with cerebral palsy get older it becomes easier to see what kind of tone their muscles will have. How Caleigh's muscles are today will not be the same this time next year. So she could, in actuality, bring home a new label when seen again.

When we arrived at our appointment I had plans to talk about Botox, Orthotics and basically see if we are missing anything. I did not expect to hear another label and learn to deal with another hurdle. It caught me by surprise. Shocked. I went in confident. Confident that I know my child and this was merely an old hat type of appointment.

The appointment consisted of our wonderful PT, the office OT, PT, Ortho Specialist, Nurse Practitioner and Social Worker. Plus the Neurologist. They all came in and did their assessment. The Neuro asked us what Caleigh's strengths and weaknesses are. We started to tell him when he took Caleigh's sock off. I mentioned her big toe and how it's been like that since the NICU. How I thought she needed Botox for it, maybe? He went to pull off the other sock asking if it was the same. Yep. He got an excited look on his face and asked the team if they knew what Caleigh's pointed toe was called. Apparently they don't see to many of them. No one in the room knew.

It's called a Striatal Toe and it's caused by Caleigh's brain injury. More specifically it is caused by injury to the Basal Ganglia, deep within Caleigh's brain.

So we talked more as he moved Caleigh's legs around. He asked if she becomes a rag doll when asleep, and we all said yes. He sat back down and began to make notes. The rest of the team came over to the table and started playing with Caleigh. She wouldn't do anything for them. So I turned on her music and she started cooperating.

The doctor began talking about normal treatments. Botox...it's still to early, Baclofen....it wouldn't work. He then asked us again how long Caleigh's toes have been that way. We said since we could remember. People are always commenting on her "cute toes" "Oh, look how they point." He asked us again about her tone while sleeping. We answered.

That's when he said it. Dystonia. She's not spastic. She's not hypotonic. "You can drop cerebral palsy" he said. WHAT! Are you kidding me? Then he backed up and said "we better keep the term cerebral palsy in case we want to do Botox injections in the future." Basically for coding purposes.

Cerebral Palsy I was ok with. I've had time to get used to the term. From the moment Caleigh was diagnosed with PVL, we heard the term come out of the doctor's mouth. Even before there were definite signs of CP, we knew it was there.

He explained that Caleigh's muscles relax and contract over and over. A big sign of Dystonia is the rag doll relaxation when sleeping. Another blatant sign of Dystonia is the Striatal Toes since birth. Dystonia is directly related to an injury to the basal ganglia of the brain.

So to explain Dystonia in simple terms it's having your muscles constantly twist, jerk and retract while you are awake and working towards something. I'm sure you've seen the "twisted" people in wheelchairs. It's about like that. You reach for the apple right in front of you and your hand twists to the left, then the right, then up, then down, then around and then eventually you make it to the apple. If your lucky. Everything you look up on the web talks about Parkinson's Disease. Unlike Parkinson's, Caleigh's form is not degenerative. It is what it is and will only change as Caleigh changes.

There are two different kinds of Dystonia. One being primary which is a genetic condition and the other is secondary which is from an injury. Caleigh's is secondary to her PVL.

As far as cerebral palsy goes there is such a thing as athetoid CP. This has more to do with constantly moving involuntarily. They call it more of a "walking movement." Something Caleigh doesn't do. It's when she is working for something that the tone, jerking and twisting start.

This also explains a lot of Caleigh's movements that we have always questioned. Things we thought looked suspicious for being seizures turned out to be a dystonic movement. Her "shudders" or "cold chills" are just her dystonia. Things that we thought were Caleigh quirks are really just apart of her condition.

At the appointment, the doctor offered us a prescription for Artane. Explaining that this med works on the part of the brain that feeds those jerky movements. The med will help smooth things out. He said either it works or it doesn't. Some children experience "out of body, psychotic tendencies" and if that happens we will have to stop the med. Pretty scary, but I think we are going to try it. We go to the GI doctor tomorrow so I plan on discussing it with him and then going to our pharmacist and talking it over. Everything you look up on Artane is based on it's affect on Parkinson's. It's a Parkinson's drug.

So what does this mean for Caleigh?

Well, not much. She's still the same Caleigh she was before this appointment. This won't change our coarse of action as far as therapies go. We will keep the term Cerebral Palsy because it does explain her brain injury to most, and like the doctor said, it will help with insurance matters. If the medicine works she should be able to achieve more movement. There are no guaranties with this. Other than my shock things will stay the same.

If you have any questions or maybe I wasn't clear on something please leave me a comment and I will try to answer as best I can.

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Update: To clarify Cerebral Palsy is a blanket term used for someone with a movement disorder. There are different types of CP based on the muscle tone involved. Dystonia is considered it's own movement disorder and does not fall under the specific types of CP. All doctors and specialists have varying opinions on this matter. Our Neuro even said it was a "philosophical question" I was asking when referring to the difference between CP & Dystonia. When I searched for the difference online the two never came up together.

Nephrology with a touch of Endocrinology

Yesterday, Eric and I took Caleigh to the Nephrologist (Kidney doc) and Endocrinologist (Diabetic, Metabolic doc). We also went to Neurology, but that needs it's own post in and of itself. So look for it next.

Our appointment with Nephrology was at 10 and Endo was at 11:30. They are in the same office and somehow we made it out of both and in the car by 11:30. Awhile back the hospital sent us a survey about our experiences at Nephrology. I basically let them have it. I even attached a page on the back so that I could write in more. The big problem was the wait. The last time we were there we waited an hour and a half just to get back to a room and then another half hour to see the nurse practitioner, not even the doctor. So maybe they read my survey, maybe other parents complained because we were in and out in no time.

Nephrology is in charge of Caleigh's blood pressure medicine and watching her kidneys. There doesn't seem to be anything wrong with her kidneys through ultrasounds and they still don't have a clue as to why Caleigh actually has high blood pressure. I've been very very slack about taking her blood pressure since we moved. I had a dry erase board at the old house that I posted the numbers to, but it was stuck to Caleigh's door and it wasn't coming off. I didn't get a chance to write down the numbers before we left. So we basically went to the appointment yesterday with one or two readings. Bad Parents. Tisk Tisk.

The thing is this, with Caleigh's movement it's impossible to get a good reading if she isn't asleep. If she is awake and moving we get higher than 140/80's (bad) or the machine just errors out. So we either put the blood pressure cuff on her before bed/nap or we sneak in, put it on and pray we don't wake her up in the process. She's such a lite sleeper. We give the blood pressure med at bedtime and then take her pressure at 10pm. Then we try again at nap time during the day.

We saw the nurse practitioner again and she wanted to double Caleigh's dose of medicine. Basically give it to her every 12 hours instead of once a day. I think her blood pressures are fine during the day, but had no proof to show, so we agreed and went on to our Endo appointment.

Trying to chew on her hand....those 2 yr molars are horrible!

Endo was fast, quick and painless. Caleigh's hormone levels are within the normal range and her Vitamin D level was great this time around. One of her testosterone levels was slightly elevated and it was decided that it may be causing her body odor. Nothing to worry about and nothing to do to fix it either. Our Endo doctor decided that she didn't need to see Caleigh anymore unless something arises and that GI can manage the Vitamin D levels from their perspective. So another doctor is knocked off the list. Whoo-hoooo!

We dropped off the new blood pressure med prescription and headed home. I laid Caleigh down for a nap and then managed to get her blood pressure without waking her. It was 99/52 which is perfect for what they want right now. So at 12:30 in the afternoon her BP was normal. I plan on taking and keeping a log of all her pressures diligently for the next week and then calling them in to see what they say. I just don't want her on extra meds if she doesn't need it, but at the same time I don't want her to have high BP and end up with more heart damage. Caleigh's last echo (April '09) on her heart showed signs of hypertrophy, or enlargement, which is caused by her high BP. We have another echo scheduled for April to see how it looks. It's a situation that could get serious if not treated correctly. So I am vowing to do better at charting and taking her blood pressures.

While Caleigh was napping Eric and I worked on painting Caleigh's play room. I think we are in the home stretch with finishing it up.

After Caleigh got up, we got ready and headed back to the hospital for our Neurology appointment which will have to be continued at a later time.........

Pulmonology

Friday, I took Caleigh to her pulmonology (lung doctor) appointment on the coldest day in 12 years. I think the temp was 18 when we left the house. We bundled up and headed out. It's been a crazy winter so far.

The appointment was at 10am and we didn't get in to see the doctor until 11:30. They were really busy which is odd. I was looking forward to that appointment because we are usually in and out. Not this time.

You know the longer the wait in the crowded room the longer the stares get and the more questions other parents start asking. "How old is she?" "Look at that curly hair! Where does she get that from?" I decided to jump out there with number 2 from my 2010 To Do List. It wasn't that big of a stretch for me though. I was in my comfort zone.

I was sitting there preaching to the choir.

It was "bring your medically fragile child to the pulmonologist day." One kid had a trach, he was maybe 9-10 months old. Using a suction machine constantly. Another kid was a teenage product of being a 1 pound preemie. Quite the miracle actually. Another had a genetic mutation and a trach. We talked about nursing care. I explained Caleigh's reflux coughing. The other parents shared as well. It was nice, but I will say that I'm not ready to mark #2 off the list yet. That would just be too easy!

When we got back to see the doctor he listened to Caleigh's lungs and said that they sounded wonderful. He commented on just how far she had come and how amazing she was doing. We decided to go ahead and get the H1N1 shot while we were there. Caleigh didn't even cry. She acted a little stunned and then heard her music that I was playing and began to smile again. We had postponed the shot because Caleigh's colitis was acting up and she was on antibiotics at the time our pediatrician called us ready to give it out. Since Caleigh is feeling better we went with it. The doc decided that Caleigh is still at risk as far as her lungs go due to her prematurity but at a relatively moderate risk at this point. We haven't had to use a nebulizer with albuterol since 2008. I looked at her checkout sheet and the level of the visit said minimal. One more step in the right direction for Caleigh. He wants to see us once a year right before flu season and that's it.

While we were at the doctor, Eric and his dad stayed at the house painting on Caleigh's room. Nope we aren't done with it. I would say we are a little more than half way though. It's the project that continues on, but it doesn't really bother me because we have the room to function without it. It's a nice feeling.

Monday brings on 3 appointments. 3 doctors appointments. I scheduled it and now I am dreading it. Wish us luck!

How 2010 Started

The first few days of the new year have been relaxed and great so far. We moved Caleigh out of her play room and put all her many things in the dining room for the up coming renovation. I decided that Caleigh's play room is where the action will be so we are starting there. It's the most visited room in our house and we spend hours in there. I like to call it a "play room" instead of a "therapy room." Who would want to play in a therapy room anyways?

I've removed all the wallpaper, we've primed the walls and picked out the paint. Here's a little teaser for you.....

I'll post the full makeover when we are all done.
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I haven't updated on Caleigh's medical stuff in awhile so here it goes...

I think the last time I wrote about Caleigh's belly we had already done two rounds of antibiotics for bacterial overgrowth with no results. We decided it wasn't bacterial overgrowth. Her colitis was acting up and we started the drug Apriso. Well, about a week into the twice a day Apriso things got worse. Bad, even. Caleigh's diarrhea was out of control and she was passing the medicine as soon as it was going in. I talked with our GI and he wanted to stop the med and see how she did. At the same time {which is a big no no to do 2 things at once} we were weaning Caleigh's reflux med and things weren't going well with that either. Her retching and reflux symptoms were terrible. So we went back to half strength and things got a little better.

About 4 days after stopping the Apriso we started giving Caleigh Slippery Elm Bark. Basically this is the natural version of the Apriso. It coats as it goes down. We give it 3 hours after her evening meds and again in the morning. You have to give it by itself because it can block the absorption of other meds due to the coating.

I've known about this stuff for about a year, but never jumped on it. I'm not sure why since the Oreganol Oil worked so well. Natural is the way to go. There are several special needs parents that give it to their kids for reflux and a couple of short gut parents that do the same. I did some more reading and people with Crohns, Colitis and IBS love it and have amazing results.

So we started the Slippery Elm about 2 weeks ago and things are really looking up. Caleigh only stools once maybe twice a day and there is consistency not just liquid. Her belly is soft and smaller. Her constant coughing has slowed down. It's not all the way gone, but better. Her retching is down to 3-4 times a day. I had lost count previously, but it was way more than that. I'm not sure if the colitis bleeding has stopped. We will have to wait for a stool sample to check for blood. Some of the information I read talked about curing crohns and colitis bleeding. I'm hoping this is the case.

As far as feeding goes....it isn't. We are taking a break from feeding and feeding therapy. We'll still be going to Speech for speech therapy but not trying any food. I still offer Caleigh her sippy cup with water in it and sometimes she likes it and other times she doesn't. I also offer smells of everything I can. I'm sad and relieved at the same time. It's a weird feeling. Temporarily giving up and not fighting with her anymore. Until we get her intestines feeling better it's useless. I can see why she would hate eating right now.

Caleigh is currently at 75 ml an hour for 16 hours a day. 1200 ml of Elecare a day which is about 40.5 ounces.

The next two weeks are full of doctor's appointments. Nephrology, Neurology, Endocrinology, GI, Pulmonology just to name a few. Things will be busy as we get back into our normal therapy schedule too. It will be fun getting Caleigh all dressed up in her new outfits for all her appointments.