How many days?

Day 5 for Caleigh
Day 3 for Holly
Day 2 for Eric

It's exactly one week since we came home from the hospital. Caleigh is feeling better. She's on the down hill slide. Her little button nose is bloody inside. Still dripping like a faucet. I've given up on wiping or making her blow it constantly. It's just so dry in there.

Wait a minute....I've never posted that. Caleigh can blow her nose. Hold tissue, cloth, or wipe to nose and just ask her "Caleigh blow your nose" and guess what.....it happens! I'm so proud of her :-) She's been able to do that for a few months now.

Our Pedi told me that days 4&5 are the worst. Depending on where you look the contagious time period varies. The CDC says that RSV is contagious from 3-8 days, but those with weak immune systems can be contagious up to 4 weeks. No one considers Caleigh's immune system weak, so that's a plus. None of us have made that 8 day mark and as long as we are all snotty and coughing I think we should lay low.

My version of this mess is just a really bad head cold. Eric's version is milder so far. Morning and nights are worse for all of us. I sound bad, really bad actually, but I got quite a bit done today. To much really. I'm paying for it now. I'm pretty sure that you can achieve anything while all hopped up on cold & cough medicine though. That stuff is golden.

Caleigh and I did make it outside today for a good dose of vitamin D. We took a long walk around the neighborhood. It's been weeks since we were able to do that. I can't wait until winter/respiratory season is over. We need the sun. Tomorrow is supposed to be just as nice of a today. So we will definitely do it all again.

I'm off to watch some more Olympics, drink hot tea, and take a very hot shower before crashing in bed.

A little bit better

Caleigh's feeling a little bit better today. She's not coughing as much and she's had more energy. Last night she slept ok for all the times I had to wake her. Breathing treatments are going well. The first few caused her to retch and vomit what she could. Darn oral aversion. We've done them every 4 hours since getting home yesterday and she seems to be getting used to it now. Her music must be on and loud during each one though. She's doing good with this whole thing and I am so very thankful for that. Our pedi called and checked on her last night. She had also talked to our Pulmonologist. Today they called to check on her again.

Sadly, Caleigh has shared her little RSV bug with me. I feel terrible. My throat hurts, head hurts and I can't sleep. Caleigh took a 3 hour nap this afternoon and I laid on the couch staring at the ceiling, computer, phone and the olympics (not all at once). I've always heard that Moms aren't aloud to be sick. It's true. Sick daughters only want their mommies. Eric's been wonderful with all my whining. He helps with so much. Such a good daddy. I'm hoping that today was my bad day and that tomorrow I will feel better.

In the above picture Caleigh is playing with my new favorite toy for her. It's the Leap Frog Word Whammer. It comes with magnetic letters that fit into an airplane. Caleigh can pull the letters out of each spot. Can we say awesome! Fine Motor Skill Heaven! She does even better when we hold it up straight in front of her. We've even caught her using her pointer finger to 'pick' the letter off of the plane. Caleigh will even go in a row. Not jumping ahead to a different letter until she has achieved pulling the first one off. She doesn't get frustrated with it. She just keeps trying until she gets it. It's amazing to watch her determination. I've taken this lead and have started making a communication board with magnets. It's turned into a fancy project. Look for an update on that soon.

In between sickness this week, we had a nursing agency come out to set up nursing hours for Caleigh. I've decided to try it out. Just three days a week for right now. I'm not sure when it will start. We have another person coming out tomorrow as well. Lots of paperwork and accessing. I can always drop it if we just hate having a nurse in the house, but we need a break. I'm willing to try. I need to not feel guilty about doing dishes or laundry and having to leave Caleigh playing on the floor by herself. I need to not feel guilty that I want a shower instead of working on crawling or whatever. My guilt has been a little overwhelming especially since we've moved into the new house. The last two months has reaffirmed my curiosities about home nursing. We'll see how it goes.

I'm off to bed now. Hopefully I can sleep. Hopefully tomorrow everyone in our house will feel much better.

Guess What Caleigh Got?

at the hospital.....

RSV

Yep, that's right, someone decided to share their lovely virus with our girl. Monday Caleigh woke up coughing. Tuesday the cough was happening a little bit more. Today she had a bark like cough in her sleep before she woke. I called and got an appointment with our Pedi for 10am. By noon we were out of there with a positive RSV swab, and a prescription for breathing treatments every 4 hours.

Caleigh's oxygen saturation is perfect right now. Her nose is running like a faucet. It's raw and red from all the blowing, suctioning and wiping. I've been putting aquapher on it like crazy. She won't let me set her down. Her arms are tight and tucked up by her sides. No fever. Just sick.

Other than a few runny noses and 2 ear infections Caleigh hasn't ever had a cold or virus that we know of. She's relatively "healthy" with all the normal kid stuff. It's weird to see her with this virus. She's acting like any other kiddo would probably act. I guess I'm just used to the adrenaline routine anytime something is off. So this is different for me.

Because of Caleigh's prematurity RSV isn't something to take lightly. Her lungs have been through enough. We'll be watching her round the clock. Doing the breathing treatments every 4 hours and checking for wheezing.

I called Eric at work to tell him and I just started laughing. Of course she has RSV....why not? The start of this year has been pretty crazy. We're tired, exhausted and we always seem to be waiting for what's next around that corner. February is all ready a wash...maybe March will look better?

Home from the Hospital

Caleigh was discharged from the hospital about 2pm today. We dropped off her prescriptions. Had her TPN delivered. We all took a de-hospitalization shower and then proceeded to relax. It's a good feeling to lay on the couch, look around and realize that we are all at home together. I missed that. Home Sweet Home.

Day 10 A Clean House

Secretly cleaning makes me feel better. I love the feeling of a clean house and even a clean car. When I am stressed, my therapy of sorts is cleaning.

Before I had Caleigh, I would set a day usually when Eric was working and I would clean for 6-7 hours. Majorly clean. Music blaring and pajama wearing. I would get done, take a shower, shave my legs and slip into my fresh clean bed sheets. It was the absolute best feeling in the world.

These days I'm lucky to get one room cleaned up per day and that's usually due to some messy disaster. For instance our kitchen got a good cleaning a few weeks ago when I went to shake Caleigh's bottle of Elecare that I had just removed the lid from. Needless to say I was cleaning that sticky mess up for hours.

So when I went home today I didn't have a lot of energy to be super cleaning, pre-Caleigh, Holly. Somewhere though, I found a tiny bit in me.

I cleaned our house for about 4 hours. It's shiny clean. I actually went home to do some laundry and get a few things ready before bringing Caleigh home, but as soon as I walked in the door I knew I needed to clean more than that. I wiped down all the light switches, door knobs and basically everything that we touch. Even though the yeast was inside Caleigh's body, I still felt like we needed to make sure we started back off right.

When I was done it felt nice. Usually when we get home from the hospital things are a mess and I spend days trying to clean and organize everything. The laundry is almost done. The kitchen doesn't have a dish sitting out and the carpet is freshly vacuumed. It will be lovely to walk in and not have to worry about anything.

Caleigh had another good day. Plans were made with home health about her going home and when they needed to deliver all of her meds and TPN. It's always a fiasco and I don't see tomorrow as being any different, but at least we are going home.

Day 9 A New Line

Bright and early this morning I talked to the charge nurse about our procedure concerns.

I then got Caleigh up around 6:45 and got her ready for surgery. They came and took us down to induction at 7:30. We didn't leave Caleigh's side until about 8:30. Every time Caleigh goes under anesthesia it seems that going over her history takes longer and longer.

Initially we had talked to our surgeon about doing a double lumen catheter. This would be more access if and when Caleigh has to have surgery. It also means more of a chance to get infected. Eric and I talked this morning and we had decided to let our surgeon know that we really didn't want one. Our surgeon came in and said that he had an epiphany during the night and that he doesn't think Caleigh needs one right now. If she has surgery then he will replace the single lumen she has with a double. So glad we are on the same page.

So off she went and 30 minutes later he was out of the OR telling us that everything went great. I asked about potential spots to place central lines and Caleigh is still very very far away from running out of access. He said that they get pretty creative with placement once things get sparse.

Thirty minutes later Caleigh was out of recovery and up in our room. Her central line is longer and bigger than her previous ones. Caleigh's veins are getting bigger and they can handle a larger catheter. This will make using the vest that we got Caleigh a lot easier. The hospital has another vest on its way for us too.

When we got back to our room and got settled in the nurse manager came by to talk to me. Lucky for her I had made a list of things the night before. She was very nice and almost too shocked that Eric and I do all of Caleigh's cares at home. She said that Caleigh's card-x (cliff notes of Caleigh's care) didn't really show that we were capable of doing any of Caleigh's stuff. She jotted down notes and made a new card-x with all of our requests. We didn't ask for anything crazy or unreasonable and I verified a lot of the hospital's policies with her. Caleigh will have a primary nursing team now. Turns out Eric and I will be drawing Caleigh's labs while in-patient and that's ok as long as a nurse is present. We do this sterile and it takes both of us to keep it that way. The hospital's policy isn't sterile. So I pretty much insisted. With kids that are chronic like Caleigh I think it is important for everyone to be on the same page. I'm glad we talked with her and I hope that this means future hospital stays are more pleasant. I can only hope. I really need to remind myself that I should just ask for the nurse manager the moment we walk in the door. It really does make life easier. I told the nurse manager that we are not questioning their nursing abilities or education, but what we are doing for Caleigh works and why should we change that and chance a problem?

So with labs due at 4am, Eric and I both are at the hospital tonight. Well take turns going home during the day tomorrow. Then the plan is still to send Caleigh home on Saturday.

Day 8 Status Quo

I went home and slept last night and honestly didn't get much rest so I've been a little cranky today (sorry honey). It's Eric's night tonight and I hope he does a better job of sleeping than I did.

Today was very hum drum for us. We did the hurry up and wait scenario. We sat around. Waited on doctors. Talked to a few and then waited some more.

We made it outside the room once for a walk around the floor. It was nice to get out of the room. The tiny room.

Our tiny room hasn't had any heat or air since we arrived, but it's been so cold outside that we really didn't notice. Until about 2pm today when it was ridiculously hot. So we put in a request on the hospital's new TV system and someone called us 1 minute later. They were up in 5 minutes and it was decided that we needed to move rooms. The move actually took place about 8 o'clock tonight. And boy did we luck out! Double room all to ourselves with a working air conditioner!

Caleigh's blood count is back to normal. Her cultures are still negative. She is scheduled to go to surgery at 8am in the morning to have her new central line placed. I'm thrilled to get it over with, but bummed that I will have to start getting on to everyone for their line practices. GLOVES! Anyone heard of those things? I plan on talking with the charge nurse first thing in the morning about what we expect.

The infectious disease doctor wants to watch Caleigh for another day and then we are scheduled to go home on Saturday. I can hardly wait.

The past couple of days Eric has been telling me that he thought he saw a mom of a Gastro-Short Bowel kid that we were in the NICU with. Apparently they were a few beds down from us for a couple of months. Apparently we talked a lot. I honestly have vague recollections of this. Well today she saw Eric in the hall and asked if he was Caleigh's dad. Yep, it was her. She's much younger than Eric and I and they live about 3 hours away from here. Her little girl is here for the same thing. Yeast in her line. Although they can't pull her line to make the yeast go away because she is completely out of access. There is nowhere else to put a central line. It's all been used from one infection after another. Basically, her next and only step is intestinal transplant. I really don't remember them all that well from our NICU days. I know they need our prayers. Transplant is a scary word.

The year that Caleigh had off of TPN has saved her veins although it doesn't really seem like it. Things could be much worse. God willing Caleigh will be off of TPN again one day.

Two little girls that started out about the same time with the same birth defect can have completely different outcomes. One with a brain injury and One with an impending transplant. It's mind boggling the way life works.

Day 7 - Negative Cultures

Today we found out that the cultures they took 24 hours ago did not grow any yeast. Caleigh is on the mend and she is scheduled to have a brand new shiny central line placed on Thursday. We are looking at going home maybe this weekend, but probably on Monday if all goes well.

Caleigh had her first stool since starting this whole ordeal a week ago. We did a cute little dance like the old days and then moved on.

Today was a better day at the hospital. Caleigh felt better smiling a lot today and that made things easier. She still cried every time she heard a strange voice but it was better than yesterday.

We talked to our doctor about our concerns. We talked to the charge nurse and we talked to the labs supervisor as well. We also found out that our hospital is doing away with alcohol pads and swabs and is switching to chlorahexidine pads. This should make life interesting with Caleigh being allergic to them. We'll see how it goes from here on out. I honestly don't have super high hopes about our little "talks" but I'm willing to try. I'm all about questioning what they are doing with a smile on my face and I'm pretty sure I'm not yet too exhausted to back down. I still have my A game when it comes to my girl. Hopefully that won't change anytime soon.

Caleigh's IV stayed put today. She did develop some swelling around 1pm and some really bad bruising, but we re-taped the IV area and the swelling went down. We've also switched to 24 hour TPN so that the rate of infusion is slower on her veins. We are also not doing lipids right now. There were a few hours of questioning the line but we decided to keep it and hold out. It's about 10pm and so far so good.

Caleigh has been fever free since Sunday night. Her white counts came back up to normal today. Her neitrophil count is still off which is why she stayed in isolation precautions yet another day. The infectious disease doctor changed Caleigh's anti-fungal medicine now that the cultures are negative. We have about 3 more weeks of IV treatment that we will be transferring home when the time comes.

The doom and gloom neurologist came by to check on things. He was again a bit condescending and threatening, but did say that Caleigh had defeated the odds for so long that we'll let her continue doing so. That's nice of him...

Thank you for all of your comments. I'm glad to know that I'm not the only one out there with my feelings. Hospital stays are hard on the soul. Especially when it has really nothing to do with you. I sit and watch on standby mode. I'm a controller and a planner and there is nothing about a hospital that goes along with my plans. Sometimes it takes a really hard day to realize that no matter how much I think I am in control of things....I'm not.

Day 6 - Caleigh's Half Birthday

Caleigh and Eric had a fairly ok night of sleep. She had another fever around 10pm so they gave more Tylenol. She slept pretty good until they came in at 4 to get labs. Since Caleigh's central line is gone labs have to be drawn wherever they can find a good vein. This is an issue. After 3 sticks and Eric catching them using chlorahexidine, which Caleigh is allergic too, they finally got the blood they needed. After that she slept until about 8ish this morning.

We are on the same floor we were on after Caleigh got out of the PICU following her STEP procedure in June of '08. A lot of the nurses remember us. Mostly Eric and his attitude! They can't believe how big Caleigh has gotten and just how long it's been. We had a lot of problems with cleanliness back in '08 and guess what? Yep, we do now too. I'm going to try to get Caleigh transferred to the oncology floor where they know their line care and infection precautions. We'll see how that goes. The hospital is very full and we should feel lucky that we got a room at this point. If we don't get moved then there will need to be a quick meeting of the minds before we continue on here. Our nurse today usually works as a nurse manager in an office. Not saying office nurse managers don't know their stuff, but this one was a mess. Caleigh doesn't even have a central line right now and we're catching mistakes. It's stupid for us to have to correct every little thing. It's exhausting.

Caleigh's white count stayed about the same today at 4.9. Which means we continue to stay locked in our room missing out on all the fun child life activities. I'm not sure we would take her to those activities, but a nice walk outside or up and down the elevator would be nice. Hopefully tomorrow it will make a bigger jump.

By the time I made it to the hospital at 9 this morning, Caleigh's IV that the anesthesiologist placed yesterday was already showing signs that it wasn't going to make it the rest of the day. When our GI came by he went ahead and wrote the orders to stop the TPN and remove the IV. He called anesthesia and off we went again to get another IV. They only allow one parent to go back so Eric got the first one and I went today. They almost didn't let me go, but I insisted considering all her allergies to adhesives and uh, Caleigh's history of IV's is locked away in my brain. No nurse would have that.

When we got down there one anesthesiologist after another came through the doors to take a look at Caleigh's veins. After 3 of them tried and missed they were starting to talk about putting her under to try to get one. One last anesthesiologist came in and decided to look at Caleigh's veins with a sono site, which is basically an ultrasound machine for veins. He looked, he found and he got it in, but he made no guarantees about how long it will last. We need another 3-4 days best case scenario. We are praying Caleigh doesn't have to go through this everyday until then. It was an exhausting hour and poor Caleigh had screamed and fought the entire time. If this IV goes tomorrow, I'll be asking for sedation meds before we try again. I pray it stays.

The whole thing sucked. It's just unfair. The rest of the day she has been clinging on to me and softly whining. The whimper turns into a scream the minute she hears a strangers voice. With Caleigh getting older and knowing exactly what is going to happen to her, it makes it very very hard for Eric and I. I've gotten a quick reminder this past week as to why Caleigh isn't a social butterfly. Strangers hurt.

It was different when she was a baby. It was somehow a tiny bit easier knowing she wouldn't remember those moments. Those days are gone. She knows and she remembers. And yes a two year old can hold a grudge.

For me on the other hand, I've become wrongly hardened to the process. Things that used to make me nauseous or upset don't anymore. I get in there and do what I have to do to help get Caleigh the best care possible. Today she screamed for an hour while they held her down trying to get that IV. I didn't even shed a tear. I didn't get sick to my stomach. I didn't yell and scream at the people that missed. My daughter's blood was all over the floor, bed and the hands of those trying to help and I didn't even break down. I comforted Caleigh with my words and hands. Became weirdly interested in the sono site. Told each person that tried to get the IV and missed "thank you" before they left the room. I can understand where they are coming from. I'm interested in where they are coming from. Something is wrong with me. Seriously, who does that?

I don't always feel like Caleigh's mom anymore. I feel like her nurse, advocate or her doctor. Most of the time it's hard for me to transition back into mom and especially since the begining of the year. My emotions are all but gone. I'm tired of people telling me that I would be a great nurse. I am a nurse. The nurse to my daughter. I didn't want that job and I sure as heck didn't ask for it. Eric's the same way. He often takes on the role of firefighter and paramedic with Caleigh. I hate that for him. I know he just wants to be dad too. If we didn't take on these roles Caleigh wouldn't be with us today. I'm sure of it.

I'm tired of the "only special people get special children" I'm tired of the "God will only give you what you can handle" speech. I know people are just trying to help and it's hard to know what to say to someone in our situtation. I've been there. I know. In the world of special needs children or chronically ill children those quotes are standard. Just like the typical sayings after someone dies. You don't really know what to say so you go with one of the old goodies like "our condolences" "we are very sorry for your loss" kinda lines. After awhile people get on with their lives, the death isn't present anymore and people stop saying the same things to you over and over. I'm pretty sure I'm not asking for anything in particular here, but when you have the same conversation over and over with everyone you meet and they use the same line on you every time, it just gets old and it's not going away.

I'm going to jump off my soap box to try to get some sleep now. I pretty sure I just need some sleep. Going home would be nice too.

Day 5 - Valentine

Last night Eric went home to get some sleep. We are trying to fall into the routine of hospital life and we've found the best way to "survive" a hospital stay is to go home and get away for awhile. It's hard to leave Caleigh, but we trust each other enough to know things will be ok. So we take turns every other night going home.

It was my night to stay at the hospital and Caleigh went to sleep fine in our new room. About 2:30am she woke up. I changed her diaper and then she began to vomit green bile. Funny thing is she still has a working Fundoplacation. Hmmm... We hooked her back up to a decompression tube for the rest of the night and dark green bile flowed out.

Caleigh's fever also spiked at the same time. It was around 102F. So we gave her Tylenol and the fever went down. She didn't feel well and you could definitely tell. After blood draws at 4:30am she fell back asleep for a little while. Mostly she was up and down fussy though.

When Eric came back up to the hospital Caleigh had another fever and we gave her Tylenol again. I'm worried about all the Tylenol and Caleigh's slightly elevated liver numbers, but we can't risk another seizure like before.

Our GI came to see Caleigh and decided that with the return of the fever and vomiting that Caleigh's central line needed to be pulled today. Anesthesia was called and Caleigh went down to have a peripheral IV placed. Praise the Lord they got it on the first try. Now the plan is to do peripheral IV TPN (half strength TPN) for 3-4 days as long as the site stays good. Then with negative cultures they will place a new central line.

Our surgeon came by a few hours later and pulled Caleigh's central line. Her chest is now bare once again with a small hole where the line was. As soon as he pulled it out you could see "yeast like stuff" around the cuff. He told us that it looks like it was a tunnel infection and with those they always have to pull the line. Caleigh immediately fell asleep and slept in my lap for about 2 and a half hours. When she woke up her eyes were mostly open like normal and she seemed to feel better. We gave her a bath and put on her valentine pj's and she stayed awake for about 4 hours seemingly happy, but still very sick.

Infectious Disease came by and we talked about Caleigh's white blood count. It went from 1.6 to 4.5 and that's a good jump meaning that it is getting better. Caleigh's yeast cultures are still coming back positive. With the line now gone we can expect to see her septic symptoms improve over the next 24-48 hours.

Tonight is my turn to be at home. I mainly came home to sleep and shower, but also to do laundry. Caleigh threw up all over her beloved sock monkey and she just can't be at the hospital without that monkey. So tonight I scrubbed and scrubbed the poor thing and it is now taking it's own shower. Hopefully the green bile will come out ok.

Tonight we are praying that Caleigh feels better soon, that her fever goes away again and that her IV stays the whole 3-4 days that they need to get rid of this infection.

Thank you to everyone that has offered to help in anyway. We miss being at home. I really miss it. Living day in and day out in a tiny room shared by all who want to walk through the doors is tough. It's extremely comforting to have visitors, but we ask that if you have been sick, or around anyone that is, you wait to visit until Caleigh's white counts pick back up to normal. We are looking at another week at the hospital between getting rid of the infection and placing a new line.

Tomorrow being Monday should be busy. I've got to make lots of calls to cancel all of the weeks appointments and at some point get up the strength to sit down and pay bills. Life goes on whether you want it to or not. It must go on.

Hope everyone had a good V-Day. G'night.

ICU Day 4

No Meningitis. That's the word we got late this morning. We were very relieved. The yeast had not colonized itself anywhere else in Caleigh's body. All of her scans came back ok. The day was calm without a hand full of procedures. It was nice.

The "spot" on the EEG was a concern to several of the doctors that came by so they put in a consult for Neuro. The Neuro on call came by this afternoon and we talked about the "spot" which wasn't really anything except abnormal electrical firing in the brain. Caleigh's brain is abnormal. Always will be. This is what every EEG shows. Good news is that she didn't have any seizures during the 30 minute EEG. He said the seizure wasn't febrile. The infectious disease and GI doctor said it was. I find it ironic that she was have cold chills, she was due for more tylenol and had a high temp the minute she started seizing. Maybe the reason it lasted for an hour is more than just the fever, but what do I know? The doctor gave an ultimatum. Get back on Keppra daily or have emergency seizure meds at home in case it happens again. We went with emergency meds. If she has another seizure she will have to be back on the meds daily. He almost sounded condesending like "I'll be seeing you back here soon" but he obliged our request and went on his way. Caleigh definitly has a low threshold for seizures, but I want to give her every chance we can off the meds. It's been a year and 9 months since her last seizure. If it happens again, we'll just cross that bridge if we get there. He also thinks the reason she is keeping her eyes closed is because of the seizure. Her brain is still recovering from the hour long ordeal and so are her eyes. Although today she did have them open more and more. He just said to make sure she keeps progressing in that area.

Infectious Disease came by and they are still concerned about Caleigh's white counts being so low. They ordered more labs in the morning to see if the numbers are coming back up. Caleigh remains on serious germ cautions. So far we have gotten back 4 days worth of positive cultures from Caleigh's line. All candida yeast. So her line will have to be pulled. It will most likely happen tomorrow or the next day.

Today was better overall. Caleigh was awake more but only for an hour or two at a time. She slept in between with me holding her. Right now she is asleep in her own crib in our own room! We just made it up here about 10pm. They will be waking us up with various things needing to be done all night long, but I am so incredibly thrilled that we are out of the noisy and bright PICU. Prayers answered for sure.

ICU Day 3

I came home tonight to sleep. Eric is at the hospital with Caleigh. I have laundry to tend to and a much needed shower on my agenda before crashing in my bed.

We had quite the busy day today. Caleigh's fever broke about 11pm last night and she slept well without any meds.

This morning she was up and semi acting like herself. She would smile at her music or us talking to her but she wouldn't open her eyes. The whole day she really hasn't opened her eyes.

We dropped the oxygen and foley catheter this morning and I think getting rid of those upped Caleigh's spirits.

During rounds everyone was ready to send Caleigh to a regular floor. The only issue from their stand point is Caleigh's blood counts. Specifically her white count is at 1 and normal is around 7-8. This means that her immune system is really compromised while she fighting this infection. This means she could very easily get something else. So for right now she is on neutropenic precautions.

Then the infectious disease doctor came by. There was a spot on Caleigh's EEG that worried him and the fact that she wasn't opening her eyes also put up red flags. He is worried that she has meningitis. Not viral and not bacterial. Yeast meningitis.

So today we did a heart echo looking for yeast attaching itself to her ventricles. We did a CT scan of her brain looking for definite signs of yeast. They will be doing an abdominal scan to look at her liver to see if the yeast is there and also her spleen. And yes, a lumber puncture to check her spinal fluid cultures.

We have a consult put in for our eye doctor to come by and check out Caleigh's eyes too.

It's been a long day. Basically if she has meningitis not much changes other than the length of the treatment. Just the same, we are praying for no meningitis.

Cultures today were still growing candida yeast. She still has her central line...for now.

Overall Caleigh has been in a better mood today. We were able to give her a bath, change her dressing, watch Toy Story and listen to a lot of music. I'm hoping she has a good night with her daddy.

I got to see the remainder of snow today and it's pretty amazing. Eric had to dig out our drive way this morning when he came home. It's pretty, but cold and I don't like the cold.

I'm off to clean something or sleep. Probably sleep.

ICU Day 2

Today has been a better day compared to yesterday, of course. Caleigh slept most of the day. She was basically out of it. Her body fighting the infection inside. This evening she seems to be hurting more. Groaning, whining, tossing and turning in her bed. I'm hoping to get her something to help sleep during rounds tonight. I think it will be a long night otherwise.

Cultures came back positive for yeast. We were offered a choice of anti-fungal medications. All of which are either terrible for the liver or terrible for the kidneys. We were also asked to be in a research study for a newer anti-fungal. Mainly studying the dosage amount in children because it had only been used in adults. Eric and I considered it, talked to the research coordinator, but decided to decline. It was a very difficult criteria to meet and Caleigh fit the profile. Caleigh would have had extra doctors appointments, blood draws and eye exams. We've just got so much going on and Caleigh's been through enough that we couldn't think of diving into anything like that right now. So they started Micafungin to treat the yeast and now we wait. Every case is different as far as the reaction time to the meds.

Our surgeon has been called and he'll come by to talk about Caleigh's line. I'm pretty sure they will have to pull it, but right now they are using it to get her all of her meds and fluids. Yeast is very tricky and it likes to hides out and come back just when you think it's gone. It attaches itself to the outside of the line and travels up the inside. It's very hard to get rid of and we've been told that her line will probably have to go.

Here's the hypothesis as to what happened.....
Caleigh had yeast in her intestines. This yeast along with all the other bugs hanging out in there can translocate to the blood stream. They basically jump ship and share within the body. This is a fairly common risk with short bowel kiddos. I've heard of kids having a sudden onset of septic symptoms when their line is flushed. By flushing the line you are pushing all of the bad bugs hanging out in the line straight into the blood stream and fast. So the thought is that when her line was flushed after the culture was taken, at home health, it pushed all those bad bugs into her blood stream causing the spike in temp and febrile seizure. So I asked our infectious disease doctor about our new protocol of betadine and alcohol and he said that it is fine and that we were doing a great job. This wasn't a sterile process problem. Just a really bad case of gut bugs gone bad.

As of tonight Caleigh's bowels have shut down as well. Her standard dark green drainage is now exiting her body by g-button. I assumed this would happen. It always does. So we wait on them to 'wake back up' to start feeds.

TPN was started back up tonight. It's replacing the fluids that they had going in the ER. Hopefully a little bit of nutrition will help the healing process.

Caleigh's fever has remained high all day. Over 102F and spiking close to 104F. She's getting Tylenol suppositories every 4 hours to try to keep another seizure away. Her body is trying to fight the infection so a fluctuating fever is actually a good thing as long as she doesn't seize again.

An EEG was ordered around noon to rule out any seizures that may be happening without us knowing. The EEG tech kinda told me that everything was good, but we haven't had an official report yet. They also haven't had Neuro come by to start meds either so that is a good sign. I'll have more info after tonight's rounds.

Chest x-rays were done this morning because her left lung has some diminished sounds. So far they are just watching it and nothing has been done. The x-rays didn't show anything significant.

I hope I'm covering everything. I suspect we will be in here for the next 7-10 days depending on how things go. Being in the PICU doesn't exactly get you on the going home list. So making a guess is just for fun right now.

I did get to see a bit of snow through one of the PICU windows today. It was really coming down. From what I hear there is 5-8 inches out there depending on where you are. It would have been nice to sit and watch from our windows, but that's ok. There will always be another time.

Tonight we are praying for Caleigh's fever to go away and for the yeast to be gone quickly. Thank you to everyone for your support during this little bump in the road. We really do have a wonderful support system.

ICU - Sepsis

The day started out normal. OT at 9. Caleigh even showed off a bit.

By 11am she had a fever. We started packing and making calls. By 12:30 her fever was up to 103.3. We gave her tylenol and finished packing bags. Fever and a central line is NO GOOD. I called our GI doc and he suggested waiting it out at home by getting our home health nurse to draw cultures. Cultures take at least 24 hours to come back anyways and the ER would just send us home to wait after drawing the labs. Caleigh was acting fairly normal so we went on to our surgery appointment at 1:30.

We had our surgeon check out her ears and he listened to her. Everything looked fine. Maybe just a virus. We discussed the possibilities of surgery. I'll have to wait until later to go into that.

We left the surgeons office around 2:30 and went down the street to our home health company. We were going to pick up supplies, a week's worth of TPN and they drew the cultures there in their office.

During and right before the blood draw Caleigh had started acting more febrile. She was shaking a bit with chills. We finished the labs. Eric picked Caleigh up. I asked him if she was shaking more. I could see her shaking. He sat her back down on the bed and we both saw it at the same time. She was seizing. Her color quickly turned blue gray. Her breathing was all over the place. Eric told the nurse to go get ice packs. I went across the hall and had the receptionist call an ambulance. Then everyone started coming into our tiny little room. Ice packs came and Eric started putting them all over her. Nurses started piling in the room one by one saying "I'm a nurse" as they came in. Eric replied with "I'm a paramedic." They brought an oxygen tank in and a pulse ox. Caleigh's O2 level was at 60 when they first hooked it up. The oxygen helped bring her up to the low 90's. The ambulance came we switched her over to all of their equipment and answered questioned. They gave her two doses of Versed and the seizure continued. They loaded her up in the ambulance and Eric went with her. I drove the van the 4 blocks to the hospital right behind them. Once we got in the ER Caleigh was still seizing. They gave her two large doses of Ativan, a dose of Phenobarb and a dose of Felbatol. After one hour of having a Febrile Grand Mal or Tonic Clonic Seizure it finally stopped. Caleigh's body still trembled with the fever but the seizure had stopped.

After awhile in the trauma room they moved us to a smaller room in the ER and Caleigh slept comfortably as long as she wasn't touched. If touched or moved she would started trembling very hard and her respiratory rate would go over 100. She was hurting. The general thought was that Caleigh had a line infection causing sepsis, but the cultures take 24 hours so everyone was just guessing. This was my thought from this morning when I took her temp. I knew something was wrong and desperately wanted it to be something else. RSV came back negative and her urine and blood counts came back normal.

Initially they had a room on the floor for us, but quickly changed their mind when the doctor in the ER touched Caleigh to check her out. She started her trembling and breathing problems and we expressed our concerns. So by 11pm we were transferred up to the PICU. Moving Caleigh from one bed to another totally threw her into a breathing spell and her respirations and perfusion were really worrying the ICU doc (which we love by the way & he remembers Caleigh). She was cold all over. He talked of intubating her because of the sepsis and breathing difficulties. He also had dopamine on hand just in case her perfusion didn't get better. He waited though. Thank God he waited. Caleigh calmed down and after starting three different antibiotics she "woke up" from her med induced sleep and became giggly and started smiling a lot. Her fever was still around 102 all night and I'm pretty sure she was feeling loopy from the meds and fever. After staying up with her all night with her smiling and trying to pull off all her leads, I'm exhausted. I did climb into bed with her and I think we got about 2 hours of sleep from 6-8 this morning. Caleigh's breathing is still very fast around 70-100. She's still on oxygen. She has a catheter so that they can track her urine output. Her blood pressures are better. Her heart rate has come down and right now she is sleeping.

We are still waiting on cultures, but she is definitely septic. They should be back this afternoon. The possibility of pulling Caleigh's central line is there. We'll just have to wait and see. I'm hoping that's not the case.

The hospital is terrible and full. RSV and FLU is everywhere and there are signs asking people not to visit if you don't have to, especially children. I hope we don't get sick from sharing the same bathrooms and doors as the other parents. There are people coughing everywhere. It would be a miracle to leave without something.

Prayers for a quick healing, no more fever, no more seizures and not having to pull her central line are requested. Prayers that we don't pick up any little buggies during our little stay too.

I hear there is a large (for Texas) snow storm going on outside. Apparently it is really pretty, but we don't have any windows in the pod we are in. Maybe I'll get out later today to take a look. Hope everyone stays safe and enjoys their snow day.

UPDATE: Just got word that her line is growing yeast. We will have to change antibiotics and go from there.

The Listening Program

As you can see, I've re-designed the blog...again. Coming from taking and working on hundreds of photos a day I tend to miss it every now and then. Ok, a lot. The blog is really my way of channeling that forgotten art. This blog is not only a journal and emotional outlet, but it also reflects how I am feeling through it's design.

The plain white background and clean lines is just a way of me wanting more simplicity in my life. Clutter be-gone. Brown and white is pretty close to black and white and you can't get more simple than that.

So there it is....until I change my mind again.

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Three weeks ago we started The Listening Program with Caleigh.

Two weeks ago we fell off the wagon while in the hospital. One week ago I forgot to start it on Monday, so we were off schedule again.

Yesterday, we started the program for the third time. By we, I mean Caleigh and I. I'm also trying to do the listening. Our OT is the one that recommended the program for Caleigh (and I). There's a lot of technical information as to how it works, but in a nut shell it calms, relaxes and organizes the central nervous system.

Caleigh sits SO still. Check out that spaced out look! You can really tell she is listening and paying attention. Every now and then she will smile and on track number 7 she broke down with a pout and almost cried.

There are 10 CDs and Caleigh has her own special schedule. 15 minutes in the morning, which is three tracks, and 15 minutes in the evening. 5 days a week with the weekends off. We make the room entirely quiet and calm and I usually hold her to help keep the head phones on. Each CD focuses on a different part of the brain.

So far Caleigh is a lot more vocal with her sounds after listening to the program.

Our OT tells us that The Listening Program started with people fighting cancer and going through chemo or radiation. They would listen to the program while receiving their treatment. The studies that they did showed a much faster recovery and less treatment than predicted. It eventaully transitioned to those with other needs.

With me doing the program too, I can attest to the fact that it is super relaxing. It's basically classical music with nature sounds, but the HD quality is just amazing and nothing I've ever heard before.

This program is wonderful for anyone that wants something that they can do at home for their child (or themselves or a friend or a family member). For less than $500 with headphones and player, this program is fairly affordable in the land of super expensive special needs therapy. It's something you can use repeatedly too. You can't just buy it off the street. You will have to go through a trained provider and there is a list on their website.

If your kid loves music as much as Caleigh does it's basically a shoe in! I'm really excited about the possibilities so look for future updates on Caleigh and the Program.

AFO's

The other day we were driving to a therapy appointment. It had been rainy and dreary + cold for days and I had been feeling generally down about things.

We were stopped at a red light when I saw a bumper sticker that said:

"Put on your big girl panties and deal with it"

I swear that sticker was sent for me to see. What an awesome anthem. Stop whining. Quit crying. Suck it up.

Ironically, I've felt a lot more cheerful since that day.

After a quick Google search I found out that the saying is the title of a self help book. Go figure.

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On to the AFO's....

About a week after we moved into the new house, our orthotic and prosthetic lady came out to cast Caleigh's feet for her first pair of AFO's (ankle foot orthosis).

It was a pretty uneventful scene. Caleigh wiggled a lot and we were told that she was going to be a challenge. Ha! If they only knew!

Yesterday, they were delivered and I really like them. Is that a weird reaction? I was actually pretty excited about the delivery. I think they are cute and they definitely hold her feet in place. While in a standing position Caleigh has better posture with them too.

It's hard to get her feet in them. Especially with all her dystonic movements, but it seems to be getting easier with each placement. They added a "shoe" type sole to the bottom so that we don't have to put actual shoes over the braces. I'm pretty sure that is the most ingenious idea to date! So instead of going oversized shoe shopping....depressing. We jumped right in with the wearing schedule.

Caleigh cried the very first time that the lady put them on. Other than that one time she doesn't seem to mind at all. They also put a bridge thing in the heel so that Caleigh's foot won't slip up. So far it's worked every time except once and that was operator (me) error.

{For those wondering...Caleigh's new chair is a Kimba Spring Base with a Leckey Squiggles seat}

The AFO's are mainly to keep Caleigh's feet flat and to help stretch the tendons and muscles in the proper direction. When in a standing position she tends to go up on her toes which is a common CP thing. Her left foot more so than her right. Another bonus to the AFO's is that they will hold down Caleigh's striatal toes.

From what I'm told, kids Caleigh's age outgrow these things fast. So I'm sure that this pair are just the first in a long line of fancy kicks for Caleigh.

Hodgepodge of Info

Not a whole lot has happened in the last few days. We are falling into a pattern with medications and TPN. I've resumed my role as "fight for the right supplies momma." So far I haven't had to endure too many hard battles, but having something brought to our house or picked up EVERYday is getting tiresome. Hopefully we will have everything in line soon.

Caleigh has been in a really good mood the past few days. She's been laughing more and making more sounds. Her head control is more stable. She has also been lifting her belly off the ground while laying on her tummy. She seems overall stronger. I think the TPN is giving her the nutrients that she was missing through her g-button feeds. The malabsorbtion of her intestines was more than we thought. We moved her up to full strength Elecare and kept her at 5ml an hour. Since starting trophic feedings Caleigh's retching and coughing has returned. She vomits at least once a day. I guess that fundoplacation is all but there anymore. Just more indication that things aren't moving through like they should.

So here's a look at Caleigh central line. This was actually before we switched our cleaning protocol. Caleigh was having a strong reaction to the chloraprep that we were cleaning her skin with. She got red blisters all over. It wasn't pretty. So now we are cleaning with betadine and alcohol and her skin is looking very nice. Her sensitive skin is just getting more and more reactive to things. This last hospital stay Caleigh had a reaction to the huggies diapers that they have. We just need to be careful with her exposures, but I don't see this getting better anytime soon.

We have been playing around with different wraps and options for keeping Caleigh's line secure. She's a year older and a year wiser when it comes to pulling on her lines. We've tried ace bandages with pretty good results. We wrap Caleigh's chest and everything stays in place. This won't be a great choice in the summer though.

When we went back to the hospital last week I started asking around about a special vest for central lines. This is apparently a secret invention that only the oncology floor knows about. I was tipped off by a nurse that the hospital actually kept them in stock and they could bill our insurance for it ($150). Apparently, the child of the inventor was an actual patient in our hospital and that's how they had a connection. So 10 minutes before we walked out the doors, our nurse brought Caleigh her very own Summer's Lifeguard vest. We really like it and it has worked great. In all fairness the surgeon put so many stitches in the new line that I really don't think it is going anywhere. The vest is a wonderful invention and we really try to use it at least when we are out of the house.

And at last....Check out our morning at Barnes and Noble with Kendall and Jocelyn. Of course I forgot my camera, but Jocelyn puts my sentiments into words about the whole adventure so I won't bore you with a repeat.

Here's a little teaser for you.....I've made the calls to get nursing help for Caleigh. Anyone that knows me, knows that this is a HUGE step. I'm hoping it is a positive step. It will take a few weeks to get the ball rolling. I'll have more information soon.