Kara ended up sleeping away the entire first shift at the hospital on Saturday. They let her be, since she'd had such a rough night and had been up the entire time, very considerate of letting us all rest that first day. Brian and I rested off and on while Kara slept soundly in that large hospital bed until 3:00! By the way, getting the bed was THE BEST decisions we made. They asked in the ER if she slept in a bed or crib. I said a crib but can we please have a bed here because the last time she was in we took turns with her in the chair, she never touched the crib other than for a few hours each night. This way she had her own little spot - tucked in with her blankies watching tv, playing toys on the bed, coloring, much better and much more comfortable for snuggling Mommy and Daddy time.
Friday afternoon, after Kara woke up we got her to drink a bottle and had some company come and visit to break up her day a little. It was so nice to see familiar faces and good for us to have some support at the hospital as well, since we were 2 1/2 hours away from home! She was feeling much better and she didn't end up having anymore diarrhea that day but had a tummy that was FULL of gas which caused her pain off and on throughout the evening. By that night, the Resident came in again and said she was pretty sure we'd be able to head home in the morning. Kara started eating little bits here and there and was drinking pretty well. We went for a few walks to try and get that gas out of her tummy and did some more playing to try and wear her out after sleeping all day.
By 11 last night we finally got her to settle down...right before shift change. I think we were asleep for about 20 minutes before they came in to check on her, this time insisting they had to. We'd been anticipating IV problems the entire time (And thank GOD it held up for us!) so they had to closely check that out, which required light, and they apparently needed vitals, including a blood pressure which I tried to fight. Kara fought the battle much better and after two attempts of her screaming at the nursing assistant, she called it quits, left it on her arm, and was planning on coming back and hitting the button later. That being on her arm aggravated her as she was trying to fall asleep so eventually, the Mamma Bear took it off her arm and threw it on the floor. (Crabby? Maybe a little. Do you blame me? We wanted sleep!) We didn't get bothered anymore through the night, that I remember anyway!)
This morning I woke up at 7:00 and figured I'd get myself awake a little bit. Got up, brushed my teeth, washed my face and climbed back in bed when the Resident came back in. She said we were ok to go, she just had to page GI to get his opinion and he'd come check her out. I figured that would take a while so that was my opportunity to hop in the shower. Well, go figure, I had just got in and shampooed my hair when Brian opened the door..."They're here" "Who?" "The team, all of them." "YOU ARE KIDDING ME." I quick rinsed, got out and threw my pj's back on because they were the easiest. I came out of the bathroom...go figure that would happen to me...
I went through everything with the GI doctor. Basically, they only handled what they figure was a virus that she got. The lab work shows that it's viral and since she'd been vomit and diarrhea free she was ok to go home. I asked all kind of questions - when to follow up, what about how things have been going slowly downhill for the last month or so, we have NO baseline, what are we supposed to do? He explained that we needed Dr. S to follow up on that because she knows Kara's care so well, as opposed to him trying to guess. He told me (WARNING to other FPIES Mom's reading this! You are NOT going to like this one bit!) that FPIES kids grow out of this by the age of two and since she's a little over two we should be at the end of our road as far as that goes. GASP. I bit my tongue. No clue where he got that info but it is SOOOOOOOOO conflicting and must be from like 1979 or something...when these babies didn't survive. He asked if she's had an endoscopy and I explained yes, but it was when she was only on one or two foods and so we had a great baseline at the time so the scope was normal. I asked different questions about eosinophilic disorders, which he made it sound like she could have something like that going on but mostly just stressed that we need to work with Dr. S about this.
We checked out of the U of M at 10:00 this morning and were home shortly after noon. We stopped home to get clean clothes on and then went to Grandma's to get big sister. We ended up spending the day there, actually at Great Grandma's on the lake, watching the power boat races today and the girls played a little bit. This Momma got a nice, long, much needed nap and break. Just what I needed and perfect for Kara to be with her sister, outside and not being cooped up in the house or hospital.
Kara did start eating today...I've been extremely careful about what she's eaten, making sure that they are foods that we knew were 100% safe, basically foods that she had in her first few trials. Unfortunately, we are back to foods running right through her again. After having icky diaper #7, I called down to the U and they paged the GI on-call who is the same doctor we've been dealing with since Thursday night when our hometown ER called down. "Basically, she is getting over a bad strain of gastroenteritis. Even though she was better this could hang in there for as much as a week or more. It's perfectly normal." I explained that it's the same symptoms as before, before we even went to the ER the first time, what sort of brought us to the U to be addressed Friday night. Upon hearing it's normal, I let it go.
I'll be on the phone at 8:00 a.m trying to get a hold of Dr. S. After that, getting that immunology appointment made. Hopefully this is the last segment of our exciting weekend. I'm exhausted, physically, mentally, emotionally. Defeated, once again. But, we are home now and that's all that matters. I'm hoping Kara sleeps well in her own bed all night and that tomorrow we can get somewhere with everything that needs to be done that should have been done over the weekend.
Anyone do laundry? Clean house? Fold clothes? Organize clutter? Clean bedrooms? :)
Sunday, July 31, 2011
Saturday, July 30, 2011
Yesterday, today? What day is it again???
Yesterday morning Brenna woke up nice and early. I got her set up in the recliner with a bowl of dry cereal, PBS kids and a blanket and explained how Mommy was up really late at the hospital and asked her to be a really good girl so I could get some more sleep before Kara woke up. What an awesome girl, she let me be so I could sleep a little longer. I woke back up not too much longer wondering how Kara was going to be. Almost afraid to find out, I laid in bed waiting to hear from her. Not too long after, she started calling out. She sounded ok, and we headed upstairs to get her.
She was happy to see us, and had to make sure to grab her usual three blankets, the stickers that had fallen off her pjs in the night and her hospital bracelet that she was holding when I put her in the crib. We made our way downstairs and she was warm. I took her temp and it was 103. Dang. I called to the ER to see what exactly we should do and was told to see our primary. Well, it was Friday and our primary isn't in on Fridays. Neither is our second choice and most of the time there isn't a third option for us. It's just too hard to start all over trying to get a different doctor to understand Kara's condition and how everything is somehow linked. As I explained to the ER doctor the night before, most often, we just wait things out at home if we can. He understood exactly what I meant by this. I called the clinic and the doctor on call was one that I was ok with seeing, especially with the ER records and everything from the night before.
We dropped Brenna off with a friend so she could play with other kids - stay busy playing and keeping her mind off her sister. She was so concerned and actually crying that she wanted to come with me the night before when I was leaving with Kara. She was happy to go play with Alana and Aidan and had no problem with me dropping her off and taking Kara. Kara and I headed out, on our way to the 2nd doctor in less than 12 hours.
The doctor we saw is one that I had when I was little so he knows me, my family and had actually seen Kara once before and remembered that she has some pretty unique health problems. We went over everything that they had ruled out and he ordered a chest x-ray because that was about the only thing they didn't do, due to her lungs sounding clear. He agreed that they were clear but thought it was still a good idea. Of course, the chest x-ray came back clear. He decided that this was probably something viral that we were dealing with and since she had been on fluids the night before, didnt' feel that she was at that point yet this time around. He explained to keep doing what we were doing, and that he was on through the weekend so if we had any problems to have him paged, if needed he'd have us come in for fluids.
We went home with my girl still running a 102 temp. At 4:30 I called that doctors nurse, explaining that her temp had stayed at 102 all day long and she was starting to have pretty bad diarrhea, but she had been playing pretty good throughout the afternoon. We went about our evening and I had Brenna go with Brian's Mom for the evening and stay over night, just in case. Besides, Brenna needed some attention and with us both focusing so much on Kara she wasn't too happy.
We put Kara to bed around 9 or so, and she went down no problem Still had the temp but seemed to be doing better. Brian and I had just decided it was time for bed, around midnight and as we were climbing into bed, Kara started crying. We listened for a minute trying to decide what to do when she started crying really hard. "I'll get a bottle, you go get her." is what I said as Brian ran up the stairs. She started crying harder. "Grab a towel!" Shit, I remember thinking, she's puking now. I got up there and she was throwing up and choking, crying. We brought her to the bathroom, holding her head over the sink, got her cleaned up and then back downstairs. She started again in the kitchen, still choking on it. It was really, really scary. We cleaned her up again, grabbed some towels and headed up to the ER. Third doctor visit in just over 24 hours.
She had calmed down by the time we got there. I dont' think she had anything left in her tummy to come out either way at this point. While waiting to register, the doctor came out and saw us there. It was the same doctor that we'd had the night before and he asked what was going on. At this point, he said, there is nothing more they can do here and told us it would be best to drive down to the U's Childrens ER, where her specialists are, there's a pediatrician and a lot more experience in peds. He explained we could check her in and go through the process to have an ambulance transfer but it's not really necessary and they were all out on calls at the time so it would probably be a few hours before we'd even be on our way, where if we brought her ourselves, we'd get there before we'd probably even leave Crosby. At this point, I felt totally defeated again. We walked out the door and I was bawling before we even got to the car. Scared for my baby, frustrated that I had no clue what was really going on with her and REALLY not wanting to get in the car for 2 1/2 hours at 12:30 at night.
We got home to pack our bags. All I could think about was how we were going to get NO sleep whatsoever. Kara perked up at at the sight of us packing, somewhat excited to "go bye-bye". We debated and debated. Brian called back to the ER and spoke w/ the doctor - do we go tonight, or do we get some sleep and go in the morning. As he was on the phone Kara started pushing our bag around the kitchen, ready to go. The doctor said it's up to us - and basically who really knows what the right thing is to do at this point.
We decided to go for it but for the first 1/4 of our trip kept questioning each other. Kara stayed awake the entire time, talking, watching a movie, fussing here and there. We arrived a little after 3:00 this morning. We sort of laughed it off and explained that it was kind of embarrassing that we were there and drove that far but Kara is REALLY sick. They understood, it happens often. The U Ped called the ER doc from our hometown and was explained everything that's gone on. He also talked to the GI doctor on call who was the same one the night before that our hometown doctor had spoken with. This process was a waiting game as the faxed records back and forth and waited for phone calls. Shortly before 5:00 this morning, still not having slept at all myself, Kara had JUST fallen asleep. The doctor came in and let me know that they decided to admit her, start her on fluids and run some more labs.
The nurses came in shortly after, and I laughed - sure, you guys wait til she FINALLY fell asleep to come in and bug her! Go figure, right? They looked for a good vein to get her IV in and had some trouble finding one. Kara was NOT happy but mostly because they had her all wrapped up in a blanket to hold her really still. They did get the IV in in one shot but it was really tricky and didn't actually go all the way in but was working just fine. There was a lot of messing around with it, which just made Kara more and more mad but they finally got it all taped up and the fluids started after taking the blood samples.
At about 6:30 this morning we were finally able to get to a room, with still no sleep. By this point my mind was absolutely fried, I couldn't think at all and was confused by my days with having been up for the last almost 24 hours. I'm way too old to be pulling up all nighters! This is when we had GI in, the residents in, a new shift of nurses. It's all pretty much a blur and we've filled in bits and pieces as the day has gone on.
She was happy to see us, and had to make sure to grab her usual three blankets, the stickers that had fallen off her pjs in the night and her hospital bracelet that she was holding when I put her in the crib. We made our way downstairs and she was warm. I took her temp and it was 103. Dang. I called to the ER to see what exactly we should do and was told to see our primary. Well, it was Friday and our primary isn't in on Fridays. Neither is our second choice and most of the time there isn't a third option for us. It's just too hard to start all over trying to get a different doctor to understand Kara's condition and how everything is somehow linked. As I explained to the ER doctor the night before, most often, we just wait things out at home if we can. He understood exactly what I meant by this. I called the clinic and the doctor on call was one that I was ok with seeing, especially with the ER records and everything from the night before.
We dropped Brenna off with a friend so she could play with other kids - stay busy playing and keeping her mind off her sister. She was so concerned and actually crying that she wanted to come with me the night before when I was leaving with Kara. She was happy to go play with Alana and Aidan and had no problem with me dropping her off and taking Kara. Kara and I headed out, on our way to the 2nd doctor in less than 12 hours.
The doctor we saw is one that I had when I was little so he knows me, my family and had actually seen Kara once before and remembered that she has some pretty unique health problems. We went over everything that they had ruled out and he ordered a chest x-ray because that was about the only thing they didn't do, due to her lungs sounding clear. He agreed that they were clear but thought it was still a good idea. Of course, the chest x-ray came back clear. He decided that this was probably something viral that we were dealing with and since she had been on fluids the night before, didnt' feel that she was at that point yet this time around. He explained to keep doing what we were doing, and that he was on through the weekend so if we had any problems to have him paged, if needed he'd have us come in for fluids.
We went home with my girl still running a 102 temp. At 4:30 I called that doctors nurse, explaining that her temp had stayed at 102 all day long and she was starting to have pretty bad diarrhea, but she had been playing pretty good throughout the afternoon. We went about our evening and I had Brenna go with Brian's Mom for the evening and stay over night, just in case. Besides, Brenna needed some attention and with us both focusing so much on Kara she wasn't too happy.
We put Kara to bed around 9 or so, and she went down no problem Still had the temp but seemed to be doing better. Brian and I had just decided it was time for bed, around midnight and as we were climbing into bed, Kara started crying. We listened for a minute trying to decide what to do when she started crying really hard. "I'll get a bottle, you go get her." is what I said as Brian ran up the stairs. She started crying harder. "Grab a towel!" Shit, I remember thinking, she's puking now. I got up there and she was throwing up and choking, crying. We brought her to the bathroom, holding her head over the sink, got her cleaned up and then back downstairs. She started again in the kitchen, still choking on it. It was really, really scary. We cleaned her up again, grabbed some towels and headed up to the ER. Third doctor visit in just over 24 hours.
She had calmed down by the time we got there. I dont' think she had anything left in her tummy to come out either way at this point. While waiting to register, the doctor came out and saw us there. It was the same doctor that we'd had the night before and he asked what was going on. At this point, he said, there is nothing more they can do here and told us it would be best to drive down to the U's Childrens ER, where her specialists are, there's a pediatrician and a lot more experience in peds. He explained we could check her in and go through the process to have an ambulance transfer but it's not really necessary and they were all out on calls at the time so it would probably be a few hours before we'd even be on our way, where if we brought her ourselves, we'd get there before we'd probably even leave Crosby. At this point, I felt totally defeated again. We walked out the door and I was bawling before we even got to the car. Scared for my baby, frustrated that I had no clue what was really going on with her and REALLY not wanting to get in the car for 2 1/2 hours at 12:30 at night.
We got home to pack our bags. All I could think about was how we were going to get NO sleep whatsoever. Kara perked up at at the sight of us packing, somewhat excited to "go bye-bye". We debated and debated. Brian called back to the ER and spoke w/ the doctor - do we go tonight, or do we get some sleep and go in the morning. As he was on the phone Kara started pushing our bag around the kitchen, ready to go. The doctor said it's up to us - and basically who really knows what the right thing is to do at this point.
We decided to go for it but for the first 1/4 of our trip kept questioning each other. Kara stayed awake the entire time, talking, watching a movie, fussing here and there. We arrived a little after 3:00 this morning. We sort of laughed it off and explained that it was kind of embarrassing that we were there and drove that far but Kara is REALLY sick. They understood, it happens often. The U Ped called the ER doc from our hometown and was explained everything that's gone on. He also talked to the GI doctor on call who was the same one the night before that our hometown doctor had spoken with. This process was a waiting game as the faxed records back and forth and waited for phone calls. Shortly before 5:00 this morning, still not having slept at all myself, Kara had JUST fallen asleep. The doctor came in and let me know that they decided to admit her, start her on fluids and run some more labs.
The nurses came in shortly after, and I laughed - sure, you guys wait til she FINALLY fell asleep to come in and bug her! Go figure, right? They looked for a good vein to get her IV in and had some trouble finding one. Kara was NOT happy but mostly because they had her all wrapped up in a blanket to hold her really still. They did get the IV in in one shot but it was really tricky and didn't actually go all the way in but was working just fine. There was a lot of messing around with it, which just made Kara more and more mad but they finally got it all taped up and the fluids started after taking the blood samples.
At about 6:30 this morning we were finally able to get to a room, with still no sleep. By this point my mind was absolutely fried, I couldn't think at all and was confused by my days with having been up for the last almost 24 hours. I'm way too old to be pulling up all nighters! This is when we had GI in, the residents in, a new shift of nurses. It's all pretty much a blur and we've filled in bits and pieces as the day has gone on.
The Last Few Days
Kara's tummy aches have seemed to be getting worse and worse lately. We can't seem to get a handle on anything and with her being able to somewhat express where her pain is now it makes it that much more heartbreaking. On Thursday morning, I was able to go to work early but unfortunately, had the girls' "babies" in my car so Brian had to make a pit stop at work to get them to avoid a more serious meltdown than what was already occurring.
I had left before Kara was awake, so I made sure to open her door of the truck to give her a hug and a kiss before she went to daycare. I remember thinking she looked puffy and commented that she had really icky breath. Huh. They went on their way.
Brian picked up the girls from daycare as well, I was home mowing the lawn at that time. I had finished and pulled up into the driveway and Kara held her hands up. Thinking she wanted to ride, I picked her up to tell her that we were all done. I thought she felt pretty warm, but it's hot and muggy, so that must be all because she'd been fine all day, there was no report from daycare. Shortly after, I had my hand around her chest holding on to her and noticed that her heart was racing and she was sort of grunting with every exhale. I told Brian "she's sick!" and he'd said she was a little fussy on the way home but there was no report of anything being wrong. We went in the house and took her temp and it was 102. I called daycare and was told she was fine - she ate like a horse, took a good nap, and after nap was outside playing with the kids. No indication that anything was wrong. I explained that she crashes really fast when something happens so not to worry. Kara continued to burn up,and not too long after, her temp was 104.2. I gave her some tylenol and she laid on me, then not wanting me to even touch her. The tylenol took her temp back down to 102 but soon after it was right back up to 104.
Around 8, I think, I made the decision to bring her to the ER when she wasn't really responding to much and was back to the groaning with her breathing. She was in tachycardia again, which is normal because of the fever - her pulse was 202! My poor baby. I explained to one of the nurses how complex her care is and that I needed the doctor to listen to me and please not brush this off as a virus or some sort of gastroenteritis because of her complex medical history. We gave a very thorough history and soon the doctor was in. He checked her over and everything looked fine - throat good, ears clear, no clear reason for what was going on. IV fluids were ordered as well as some lab work. Labs came back decent, but she had a high white blood cell count. He then thought we should get a urine sample which came back fine too. Next she had to have blood cultures done and IV Rocephin started because of the infection.
We were able to home shortly after 1:00 a.m. with the understanding that if she still had her fever in the morning we needed to bring her back in and talk about a possible transfer to the U since there is no pediatrician or specialty doctors at our small town facility. I took Kara home hoping and praying that we'd see a great improvement the next morning due to the fluids and meds she was given.
I had left before Kara was awake, so I made sure to open her door of the truck to give her a hug and a kiss before she went to daycare. I remember thinking she looked puffy and commented that she had really icky breath. Huh. They went on their way.
Brian picked up the girls from daycare as well, I was home mowing the lawn at that time. I had finished and pulled up into the driveway and Kara held her hands up. Thinking she wanted to ride, I picked her up to tell her that we were all done. I thought she felt pretty warm, but it's hot and muggy, so that must be all because she'd been fine all day, there was no report from daycare. Shortly after, I had my hand around her chest holding on to her and noticed that her heart was racing and she was sort of grunting with every exhale. I told Brian "she's sick!" and he'd said she was a little fussy on the way home but there was no report of anything being wrong. We went in the house and took her temp and it was 102. I called daycare and was told she was fine - she ate like a horse, took a good nap, and after nap was outside playing with the kids. No indication that anything was wrong. I explained that she crashes really fast when something happens so not to worry. Kara continued to burn up,and not too long after, her temp was 104.2. I gave her some tylenol and she laid on me, then not wanting me to even touch her. The tylenol took her temp back down to 102 but soon after it was right back up to 104.
Around 8, I think, I made the decision to bring her to the ER when she wasn't really responding to much and was back to the groaning with her breathing. She was in tachycardia again, which is normal because of the fever - her pulse was 202! My poor baby. I explained to one of the nurses how complex her care is and that I needed the doctor to listen to me and please not brush this off as a virus or some sort of gastroenteritis because of her complex medical history. We gave a very thorough history and soon the doctor was in. He checked her over and everything looked fine - throat good, ears clear, no clear reason for what was going on. IV fluids were ordered as well as some lab work. Labs came back decent, but she had a high white blood cell count. He then thought we should get a urine sample which came back fine too. Next she had to have blood cultures done and IV Rocephin started because of the infection.
We were able to home shortly after 1:00 a.m. with the understanding that if she still had her fever in the morning we needed to bring her back in and talk about a possible transfer to the U since there is no pediatrician or specialty doctors at our small town facility. I took Kara home hoping and praying that we'd see a great improvement the next morning due to the fluids and meds she was given.
Tuesday, July 26, 2011
The Big Sister
Brenna is our oldest daughter, turning four years old days before Kara turned two. She has been the best big sister to Kara since day one loving her up and helping me with her, often times nursing her baby right next to us. Brenna has learned from watching, never one to miss a moment and with that comes the things that she's learned by simply having Kara as a baby sister. Brenna was barely two and a half when Kara had that terrible first reaction. Brenna came to the hospital with us, being so scared and protective of her baby sister.
To this day, Brenna has been protective. Brenna is a little mamma and while playing with her baby, it's not uncommon for her to stop, look carefully at the piece of "food" she's going to be giving her baby and say "Oops, no baby, this has soy in it and soy is owie on your tum-tums." This has become our newest phrase when explaining to Kara that she can't have something, while rubbing her tummy and Kara accepts this.
One of those horribly miserable days post surgery, I was beside myself as far as what to do with Kara. After talking to both doctors, we had decided it was best for her to go to the Emergency Room. At that point I wasn't quite sure how the heck we were going to get there, having a very sick Kara and an anxious Brenna home with me. I finally sat down on the couch, feeling incredibly defeated and started to cry.
Brenna looked at me: "Mom, are you crying?"
Me: Yes, Brenna, I am.
Brenna: Why are you crying Mom?
Me: Because Kara is really sick and it just makes Mommy really sad.
Brenna: But Mommy, Kara is going to be ok. You always tell me that she is going to be just fine!
This child is an amazing nurturer. I realized I need to be strong and with that, pulled myself together, was able to put Kara down for a few minutes so I could get things ready to go and off we went.
If we ask Brenna what Kara is allergic to she can get started with the list: dairy, soy, rice, oat, green beans, and pears without too much trouble. It's not uncommon for someone to ask Brenna if Kara can have a certain food or not. She pays a lot more attention than we sometimes give her credit for!
Kara recently had to have some stool tests done. Brenna was exploring in the diaper bag to see what kind of goodies we had brought home with us this time. She pulled the clear ziploc bag out of the diaper bag and asked if we got more doctor stuff at the appointment! (Before Kara's surgery, they sent us home with a package of supplies to play doctor with to get Kara used to some of that stuff.) I explained no, you can't use that, it's for a test that Kara has to have done. That wasn't enough of an explanation so I went into some detail. She asked if she needed to help me, and if she could help me. She asked this constantly until the time finally came TO help me. Brian was gone, and she sat right there, handing me the gloves, the wipes, everything I needed. She was so excited to have helped Mommy with Kara's test. Now, a few days later, she's still asking when we are going to get Kara's test back, not quite understanding the process as well as she'd like to. At what point do I say no and not let her help? I dont' think I need to, she's concerned and learning, and letting her be right along side of Kara as she goes through these things is going to make their sister bond that much tighter.
I think I am stronger because of Brenna, helping us through this. At the end of a long day of appointments, the best thing is getting home to my sweet girl, waiting patiently to snuggle with her Mamma. I LOVE this girl and for being only four years old, she has sure grown up fast!
To this day, Brenna has been protective. Brenna is a little mamma and while playing with her baby, it's not uncommon for her to stop, look carefully at the piece of "food" she's going to be giving her baby and say "Oops, no baby, this has soy in it and soy is owie on your tum-tums." This has become our newest phrase when explaining to Kara that she can't have something, while rubbing her tummy and Kara accepts this.
One of those horribly miserable days post surgery, I was beside myself as far as what to do with Kara. After talking to both doctors, we had decided it was best for her to go to the Emergency Room. At that point I wasn't quite sure how the heck we were going to get there, having a very sick Kara and an anxious Brenna home with me. I finally sat down on the couch, feeling incredibly defeated and started to cry.
Brenna looked at me: "Mom, are you crying?"
Me: Yes, Brenna, I am.
Brenna: Why are you crying Mom?
Me: Because Kara is really sick and it just makes Mommy really sad.
Brenna: But Mommy, Kara is going to be ok. You always tell me that she is going to be just fine!
This child is an amazing nurturer. I realized I need to be strong and with that, pulled myself together, was able to put Kara down for a few minutes so I could get things ready to go and off we went.
If we ask Brenna what Kara is allergic to she can get started with the list: dairy, soy, rice, oat, green beans, and pears without too much trouble. It's not uncommon for someone to ask Brenna if Kara can have a certain food or not. She pays a lot more attention than we sometimes give her credit for!
Kara recently had to have some stool tests done. Brenna was exploring in the diaper bag to see what kind of goodies we had brought home with us this time. She pulled the clear ziploc bag out of the diaper bag and asked if we got more doctor stuff at the appointment! (Before Kara's surgery, they sent us home with a package of supplies to play doctor with to get Kara used to some of that stuff.) I explained no, you can't use that, it's for a test that Kara has to have done. That wasn't enough of an explanation so I went into some detail. She asked if she needed to help me, and if she could help me. She asked this constantly until the time finally came TO help me. Brian was gone, and she sat right there, handing me the gloves, the wipes, everything I needed. She was so excited to have helped Mommy with Kara's test. Now, a few days later, she's still asking when we are going to get Kara's test back, not quite understanding the process as well as she'd like to. At what point do I say no and not let her help? I dont' think I need to, she's concerned and learning, and letting her be right along side of Kara as she goes through these things is going to make their sister bond that much tighter.
I think I am stronger because of Brenna, helping us through this. At the end of a long day of appointments, the best thing is getting home to my sweet girl, waiting patiently to snuggle with her Mamma. I LOVE this girl and for being only four years old, she has sure grown up fast!
Thursday, July 21, 2011
A Kara Story
Kara was determined that she was going to wear big girl underwear last night and did pretty well in them for a while. After supper, she had an accident so I put her in a diaper and put her pj’s on. Brian’s Mom was over playing with Brenna, I was busy doing something, and Kara was quiet, which isn’t totally out of the norm for her lately, I just figured she was playing nice back in Brenna’s bedroom. She came running out of the bathroom, through the house with the bowl to the potty chair “I PEED!” she said, so excited! I looked beyond her and saw the trail of liquid that she splashed along the way and looked at Cindy, who was desperately trying not to giggle as I questioned Kara. “You peed? But you have your jammies on! Where is your diaper?” I asked, pulling at her pj shorts to find her diaper on, just as I had left it. I started thinking, she’s too short to reach the sink, what the heck did she do? I lead her to the bathroom to clean up the “pee” that was on her and so she didn’t slip on the trail she left. We got to the bathroom and there was wet, soggy toilet paper all over the floor as well as the toilet and floor around it being soaked with water. This child is genius. She dipped her potty chair INTO the toilet to fill it up so that we’d think she peed in it. I was ABSOLUTELY HORRIFIED, not sure if I was going to bust out laughing or bawling in frustration with the situation!
Wednesday, July 20, 2011
YAY FOR GI!!!
Today was the day for Kara's much anticipated GI appointment. I typed the mental list into my phone on our way to the cities, while discussing things with Brian. I kept thinking of our family doctors words at Kara's last appointment, where I broke down in tears "we will get this figured out, Kendall, and if we don't, we'll send her somewhere else." Her, just as determined as me, to get Kara figured out, knowing how out of sorts she's been.
I had a list of labs that I wanted to talk about possibility of having done. Kara hasn't had much for testing other than a recent hemoglobin (which was fine) and when I've asked in the past, I was told they wouldn't mean much because we have no baselines.
I had it in my head that I wanted to have Kara see an immunologist. I can't put it into words how I came up with this, so explaining my reasoning to Brian in the car on the way down was extremely difficult. In my mind, everything seemed to fit together, and an immunologist seemed like the next direction to go. This made it onto my list, not quite sure how to bring it up, when I couldn't even make sense of it out loud!
The next part of it was explaining the frustration between the connections we've seen with Kara. The skin problems, with the respiratory problems, with the GI problems. They all run together. I KNOW they do. When one is flaring, the rest of them are bad.
We got to the appointment the nurse said "you are here for a follow up for reflux and diarrhea, right?" Um. Yeah. The new reflux meds that we were supposed to trial six weeks ago that we never even got around to starting. (Hey, it has been a crazy, insane, impossible to start anything new six weeks.) She got the vitals and the doctor was soon in.
Dr. S. came in and started asking how Kara has been. I let her know we've been struggling. The night waking, the naughty behavior, the trying to distinguish between what's pain and what's "two", the eye-watering-can't-get-out-of-the-house-fast-enough diapers, the gas, the burps, the near-vomiting, explaining every symptom we've had. I stressed to her that there has to be something more going on because she USED to be at baseline and now we have no clue what that is. Currently, it is clear that Kara has tummy pain nearly every single day. She's been able to tell us when she has pain and "owie tummy" is coming out quite often, MOST of the time, she is telling the truth.
Dr. S. is mostly worried about Kara's urpiness at this time. We are to do a four week trial of Zantac every day and if that doesn't fix the night waking and urpies than we are probably going to be talking about taking another look inside...aka scoping again. (knowing that she tolerated the anesthesia decent the second time around, and that steroids are a MUST, this doesn't scare me as much as it did the last time!) She wants us to do a few stool sample tests - one to test for blood in the stool and another to measure I believe, fat in the stool, basically to check for malabsorbtion. Kara had some blood work done today as well...a full blood count, sed rate, and CRP. This is exactly what I had in mind before her appointment!
We started talking about my frustrations of the eczema, airway problems and GI problems and I stressed how they have got to be all related. I explained my frustrations at Kara's last appointment at home and with that Dr. S. said that its' time to have Kara see an immunologist. I could feel my eyes burn, I could have started to cry but held it back. ALL OF MY RESEARCH HAS PUT ME ON THE RIGHT TRACK!!! I seriously wanted to get up and give her a hug. She was one step ahead of me and in this FPIES world that we are in, that is UNHEARD OF. She said she is fairly certain that everything is going to come out ok from immunology but it is definitely something we need to look into.
Dr. S asked when we saw Allergy last and I explained that we saw Dr. H in May and it was basically a "you're on the right track, come back in a year" appointment. I said I was grateful because she had the RAST and skin prick testing to know how her dairy and peanut allergies are going but other than that, there was no direction. She is going to consult with Dr. H to see if he can help us anymore than that at this time. I also asked if there was any other Allergist that she know of that would be of more help than he is and she said no, he is basically the best around for these types of problems. Whew. We ARE with the best! I hope something good comes out of that conversation too!
Next, the skin. Yep, our GI even talked with us about Kara's skin! How great is that? She asked if we've ever seen a dermatologist and I said no, explaining that our family doctor has helped greatly in this area. We get it cleared up but then it flares again. Dr. S wants us to see a dermatologist now, and one down there, to have our team all together to communicate, and have all the records right there. She picked one, and said not even a pediatric one, Kara needs to see one who sort of specializes in more complex cases, where it's more than just skin that's the problem.
meds work and help the other problems than we follow up in 3 months. Once again, it's going to be busy. I'm anxious to get these labs underway...just waiting for, well, you know...before we can get them to the hospital to be processed! =)
I had a list of labs that I wanted to talk about possibility of having done. Kara hasn't had much for testing other than a recent hemoglobin (which was fine) and when I've asked in the past, I was told they wouldn't mean much because we have no baselines.
I had it in my head that I wanted to have Kara see an immunologist. I can't put it into words how I came up with this, so explaining my reasoning to Brian in the car on the way down was extremely difficult. In my mind, everything seemed to fit together, and an immunologist seemed like the next direction to go. This made it onto my list, not quite sure how to bring it up, when I couldn't even make sense of it out loud!
The next part of it was explaining the frustration between the connections we've seen with Kara. The skin problems, with the respiratory problems, with the GI problems. They all run together. I KNOW they do. When one is flaring, the rest of them are bad.
We got to the appointment the nurse said "you are here for a follow up for reflux and diarrhea, right?" Um. Yeah. The new reflux meds that we were supposed to trial six weeks ago that we never even got around to starting. (Hey, it has been a crazy, insane, impossible to start anything new six weeks.) She got the vitals and the doctor was soon in.
Dr. S. came in and started asking how Kara has been. I let her know we've been struggling. The night waking, the naughty behavior, the trying to distinguish between what's pain and what's "two", the eye-watering-can't-get-out-of-the-house-fast-enough diapers, the gas, the burps, the near-vomiting, explaining every symptom we've had. I stressed to her that there has to be something more going on because she USED to be at baseline and now we have no clue what that is. Currently, it is clear that Kara has tummy pain nearly every single day. She's been able to tell us when she has pain and "owie tummy" is coming out quite often, MOST of the time, she is telling the truth.
Dr. S. is mostly worried about Kara's urpiness at this time. We are to do a four week trial of Zantac every day and if that doesn't fix the night waking and urpies than we are probably going to be talking about taking another look inside...aka scoping again. (knowing that she tolerated the anesthesia decent the second time around, and that steroids are a MUST, this doesn't scare me as much as it did the last time!) She wants us to do a few stool sample tests - one to test for blood in the stool and another to measure I believe, fat in the stool, basically to check for malabsorbtion. Kara had some blood work done today as well...a full blood count, sed rate, and CRP. This is exactly what I had in mind before her appointment!
We started talking about my frustrations of the eczema, airway problems and GI problems and I stressed how they have got to be all related. I explained my frustrations at Kara's last appointment at home and with that Dr. S. said that its' time to have Kara see an immunologist. I could feel my eyes burn, I could have started to cry but held it back. ALL OF MY RESEARCH HAS PUT ME ON THE RIGHT TRACK!!! I seriously wanted to get up and give her a hug. She was one step ahead of me and in this FPIES world that we are in, that is UNHEARD OF. She said she is fairly certain that everything is going to come out ok from immunology but it is definitely something we need to look into.
Dr. S asked when we saw Allergy last and I explained that we saw Dr. H in May and it was basically a "you're on the right track, come back in a year" appointment. I said I was grateful because she had the RAST and skin prick testing to know how her dairy and peanut allergies are going but other than that, there was no direction. She is going to consult with Dr. H to see if he can help us anymore than that at this time. I also asked if there was any other Allergist that she know of that would be of more help than he is and she said no, he is basically the best around for these types of problems. Whew. We ARE with the best! I hope something good comes out of that conversation too!
Next, the skin. Yep, our GI even talked with us about Kara's skin! How great is that? She asked if we've ever seen a dermatologist and I said no, explaining that our family doctor has helped greatly in this area. We get it cleared up but then it flares again. Dr. S wants us to see a dermatologist now, and one down there, to have our team all together to communicate, and have all the records right there. She picked one, and said not even a pediatric one, Kara needs to see one who sort of specializes in more complex cases, where it's more than just skin that's the problem.
meds work and help the other problems than we follow up in 3 months. Once again, it's going to be busy. I'm anxious to get these labs underway...just waiting for, well, you know...before we can get them to the hospital to be processed! =)
Friday, July 15, 2011
These Days
Life has been simply exhausting around here these days. June started with prepping for Kara's surgery, the surgery itself with the hospital stay and recovery, followed by the 4th of July and all the festivities surrounding it in our community. In the last week we have been completely back on track, back on our normal schedule. Things should be getting back to normal around here, but they aren't.
Because we can't seem to make it one week without a visit to the doctor for some reason (oh wait! We did it this week!) we started last week out, after the holiday, at the doctor because Kara had an eczema flare that was totally out of control. By the time I decided to make her appointment, she had the inflammation cough again as well. Back on meds we go - two new prescriptions for the skin! If this didn't work (which it has, luckily) it was on to a dose of Prednisone which would have helped the cough as well, but of course only temporarily.
Kara has been completely out of sorts. There is no such thing as a baseline at our house anymore and we have a child who is waking up screaming in the night for hours - mostly two hours every night. She's having terrible tummy aches which is obvious by her crankiness, and other more obvious symptoms. We have a GI follow up appointment on Wednesday morning. Kara has had no new foods since our last GI appointment which was about six weeks ago and has been antibiotic free for a few weeks now as well. After eating peas for lunch one day this week I thought we may be running down the road of another VERY delayed reaction to those but then the last few days she's been on a very basic diet and things still haven't been looking any better.
Our days are consumed with laughing and playing but then just as soon as that starts its hitting and screaming. It's a daily roller coaster of up and down symptoms which tell me that something more is going on. We are getting really good at distraction - last weekend we spent the day out on the boat after an early 10:00-12:00 nap due to a very ornery Kara. She was so happy, swimming in the water but every so often, she'd get out and need to snuggle up, clear that she'd had enough and needed a rest. I'm am purely exhausted because she just wants her Mamma. With all of this happening, life still has to go on. I have a four year old sweetheart who wants her Mommy time that she deserves and a busy husband. I feel the need for a get-away, an additional 3 hours in my day, or a few more arms!
Because we can't seem to make it one week without a visit to the doctor for some reason (oh wait! We did it this week!) we started last week out, after the holiday, at the doctor because Kara had an eczema flare that was totally out of control. By the time I decided to make her appointment, she had the inflammation cough again as well. Back on meds we go - two new prescriptions for the skin! If this didn't work (which it has, luckily) it was on to a dose of Prednisone which would have helped the cough as well, but of course only temporarily.
Kara has been completely out of sorts. There is no such thing as a baseline at our house anymore and we have a child who is waking up screaming in the night for hours - mostly two hours every night. She's having terrible tummy aches which is obvious by her crankiness, and other more obvious symptoms. We have a GI follow up appointment on Wednesday morning. Kara has had no new foods since our last GI appointment which was about six weeks ago and has been antibiotic free for a few weeks now as well. After eating peas for lunch one day this week I thought we may be running down the road of another VERY delayed reaction to those but then the last few days she's been on a very basic diet and things still haven't been looking any better.
Our days are consumed with laughing and playing but then just as soon as that starts its hitting and screaming. It's a daily roller coaster of up and down symptoms which tell me that something more is going on. We are getting really good at distraction - last weekend we spent the day out on the boat after an early 10:00-12:00 nap due to a very ornery Kara. She was so happy, swimming in the water but every so often, she'd get out and need to snuggle up, clear that she'd had enough and needed a rest. I'm am purely exhausted because she just wants her Mamma. With all of this happening, life still has to go on. I have a four year old sweetheart who wants her Mommy time that she deserves and a busy husband. I feel the need for a get-away, an additional 3 hours in my day, or a few more arms!
Sunday, July 10, 2011
Update
Well, we (obviously!) survived the tonsillectomy. The best thing I can say about the experience is that I'M SO HAPPY THAT WE NEVER HAVE TO DO THAT AGAIN. It was two really, really rough and sometimes scary weeks but it's over with and she's well healed from it.
We had Kara's post-op appointment last Friday. We opted to have the appointment here, in our hometown because she was back to eating and we knew she could hear just fine (Very well, in fact - she'd cover her ears at all sorts of sounds, like she'd never quite heard them that loud before!) The ENT at the U knows the ENT that travels to our local clinic and he had no problems with this so it saved us a day of travelling. His report was that her ears are CLEAR and DRY and that her throat looks great. We could FINALLY breath a sigh of relief to know that we got the procedure behind us.
Since I last blogged, life has been busy and we've been trying to enjoy summer. Kara is having some problems again, which we didn't anticipate, being that she was on mainly Neocate for over a week but yet she is far from baseline. We had a clinic appointment this week because of this missing baseline again. Her body is inflamed again. The visible is obvious by taking one look at her skin. The less obvious is showing us symptoms - the hacking cough, the urpies, gas, and icky, icky diapers. We see GI on the 20th and with that we are going to be seeing a dietitian as well. In the meantime, I am back to digging, trying to find a connection, trying to find some kind of specialist that can help us put all of these pieces together. I feel like we are back to square one, just waiting for that initial appointment.
I had a mini-meltdown at Kara's appointment the other day. Bring it on, life, I'm one tough girl but the minute I get frustrated with something that I have no control over, I lose it. I started updating Kara's doctor about her last food fail, how she has never quite made it back to baseline from that, how I'm afraid there's more going on in her body than FPIES and I was reassured that we will get this figured out. If we don't get anywhere at her next appointment, then we'll look somewhere else. I'm determined to have my happy girl back.
We had Kara's post-op appointment last Friday. We opted to have the appointment here, in our hometown because she was back to eating and we knew she could hear just fine (Very well, in fact - she'd cover her ears at all sorts of sounds, like she'd never quite heard them that loud before!) The ENT at the U knows the ENT that travels to our local clinic and he had no problems with this so it saved us a day of travelling. His report was that her ears are CLEAR and DRY and that her throat looks great. We could FINALLY breath a sigh of relief to know that we got the procedure behind us.
Since I last blogged, life has been busy and we've been trying to enjoy summer. Kara is having some problems again, which we didn't anticipate, being that she was on mainly Neocate for over a week but yet she is far from baseline. We had a clinic appointment this week because of this missing baseline again. Her body is inflamed again. The visible is obvious by taking one look at her skin. The less obvious is showing us symptoms - the hacking cough, the urpies, gas, and icky, icky diapers. We see GI on the 20th and with that we are going to be seeing a dietitian as well. In the meantime, I am back to digging, trying to find a connection, trying to find some kind of specialist that can help us put all of these pieces together. I feel like we are back to square one, just waiting for that initial appointment.
I had a mini-meltdown at Kara's appointment the other day. Bring it on, life, I'm one tough girl but the minute I get frustrated with something that I have no control over, I lose it. I started updating Kara's doctor about her last food fail, how she has never quite made it back to baseline from that, how I'm afraid there's more going on in her body than FPIES and I was reassured that we will get this figured out. If we don't get anywhere at her next appointment, then we'll look somewhere else. I'm determined to have my happy girl back.
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