While Brian was gone at the store getting Kara's benedryl, Kara started getting really fussy and was in obvious pain. We had made plans for some family to come down to the hotel to have pizza with us and hang out so they were on their way and I was holding Kara, rocking, on the bed waiting for Brian to get back. She had a very obviously bloated tummy and I was getting really nervous. She finally had a full diaper of nasty, rotten diarrhea. It amazed me at how much and how sick it was making her. I was just finishing cleaning up when Brian walked back to the room. He called the front desk for air freshener, a clean bed sheet and comforter, and extra garbage bags. After this is all a little bit of a blur, other than knowing that something wasn't right. Brian's brother and his family got to the hotel and we went downstairs to wait for our pizza. Kara was snuggling on my lap and started getting really urpy. I thought for sure she was going to throw up so Brian helped me up to the room to get settled with her while Brenna stayed with Jon and Laura. Up at the room Kara continued to have diarrhea, over and over again. I called Brian and told him that she was really sick, if we were in our hometown that I would have had her in the ER already and that I had NONE of her records. They all came back upstairs, got ready to go and we started making plans. Luckily Brian has an Aunt and Uncle that live only minutes away from we were staying so his Aunt came and picked Brenna up and we packed a bag for Kara. At this point, Kara was nearly in shock, not really with it, at all, just SICK. I was waiting in the lobby for Brian to get Brenna settled in the car and Kara had another diarrhea episode, all through her onsie, pants, everything. I had her wrapped in a big blanket, didn't bother with shoes or a jacket, so luckily I was able to just re-wrap her in that. we hopped in the car, I held her in the back seat to try and keep her awake. We got to the ER and rushed in.
The nurse took us back and triaged us immediately. It was crazy busy in the ER at Children's that night. She said to take a seat and within a matter of minutes we were back in the room with the nurse, and the doctor in immediately after. Everything happened so quickly. The doctor came in, asked what our usual treatment is for these reactions and with that, the decision was made to be admitted and the nurse was back in starting the IV. Kara continued to have diaper after diaper in the ER. I had never seen anything like it. Not too long after the fluids were started, her tummy started to slow down a little bit and she was able to rest. We waited in the ER for what seemed like forever (probably because I just wanted to get up to a bed and get some rest!) and then were finally wheeled up to the room. They explained they were busier than they had been all year that night!
We got up to the room and the nurse did our admission and explained the process. Kara still needed to have an abdominal x-ray but they were hoping to be able to have it done with the portable up in the room. The resident would be in to do her admission and then the pediatrician would come in when she got a chance after that. I was told in the ER by the doctor that I would really like the pediatrician and that she thought I'd find that we really had a lot in common. I wondered what she meant by that as I snuggled Kara!
The resident came in and had a million questions for my tired brain to try and answer. I then had a million questions for her. I would start with "this is probably a question for the GI team tomorrow, but..." and she amazed me by being able to answer nearly every one of my questions! She finished things up saying that the doctor would be in at some point and apologized for how busy they were that night!
We finished up the admission with the RN, had Kara's x-ray done (in the room!) and she slept through everything. As we were finishing up, another person came in the room, introducing herself as the Pediatric Hospitalist. She apologized for being so late and that she had been trying to get in there all night, sicne she found out the reason we were being admitted. She pulled the chair right up to me in the bed and said "I know exactly what you are going through. My eleven year old son is on Elecare. I've been through all of this and know what it's like!" I was SHOCKED. She said her resident on that day was thisclose to graduating and being a doctor and she was lucky to have her that night because she was so good. Being that the resident and I got everything nearly cleared up, this gave the Pediatrician and I some time to talk. I can't even explain how good it felt to talk to a DOCTOR who knows what we go through! She was my life saver that night. She said she wished she was on for the entire weekend because she considered Kara "hers" and wished us the absolute best.
Kara and I slept until about 8:00 the next morning, since it was basically four a.m. before I fell asleep. We had a day of doctors and nurses and the GI team come in. The day pediatrician was amazing as well. He reminded me of one of my Uncles, who absolutely adores little kids! He let me know to let them know what we need, that I was running the show. She could try a bottle later on in the afternoon if she wanted to and we would see how she did throughout the day. We rested, colored pictures, played in the bed a little bit and rested some more, as well as had a little bit of company. Kara had a few more icky diapers but her tummy settled down pretty good. By Saturday evening she had taken her second bottle, drinking about half of each one. She continued to have a few minor episodes but I was fairly confident we could go home the next morning. She tends to need about 24 hours of nothing by mouth and then we seem to be able to slowly add formula and then foods again.
Sunday morning the GI doctor came in adn said she was probably ok to go home. He explained that we may see some diarrhea here and there as she continues to get better so not to be alarmed. They paged the peds team to come in and discharge us, and we were out of the hospital at 11:00. Kara was so excited to have her IV out, and get to go home and see her Brenna!
Wednesday, December 21, 2011
Tuesday, December 20, 2011
Family Fun
I've been meaning to get on here and update over the last few weeks but Kara had been doing so well, that I really didn't have much to update on! No news is good news, right? We made it about three weeks with no travelling and Kara was successfully able to tolerate potato and sweet potato! We had a wonderful Thanksgiving and most recently, made a trip to the cities for a fun, family trip.
We received a gift certificate from the local Holiday Inn Express for our family down in the cities to use for a trip down there for fun when they donated water park passes to Kara's benefit. Realizing earlier last week that it expired at the end of the year, we decided that last weekend was the perfect time, before the crazy holidays start, to take this trip! We had our shopping done early, Kara had been doing great, and we were ready for a little family vacation!
We left Thursday afternoon. We got a later start because everything was taking longer than I had anticipated. We finally were able to pick the girls up from daycare and head out! We were about ten miles down the road when I realized I forgot the girls swim suits and we had to run back to the house. We turned around and not too much after that Kara threw up! She ended up fine, I figured it was from her sticking her fingers in her mouth and gagging herself. (she ALWAYS has her fingers in her mouth!!) We ran in the house and got her cleaned up and then once we were convinced she was ok, got back on the road again.
Friday we had a wonderful day. We got to the Children's Museum right as the opened and spent a few hours there. I think we all had a lot of fun there! The girls were pretty amazed at all the cool things there was for them to do! After that we decided to go to Mall of America. Both girls napped in the car during the short ride there but it was enough to rally them for the next stop! We walked around and decided to go to Nickelodeon Adventures first, to wear them out. We were checking out the ride prices and a guy stopped us offering us a ticket with 100 points on it for less than a quarter of the price so we took him up on it! Little did we know how long it would take us to use up 100 points! The girls went on ride after ride, loving all of it! We used up our tickets, finally, and decided to go back to the hotel. I think Brian and I were more tired than the girls were!
We had a great time and created lots of memories that day. We were thinking about heading to the Holidazzle Parade or just staying in and ordering pizza. We were all pretty wiped out and Kara was feeling a little off and clingy but seemed ok. She barely had an aappetite all day so that was a little concerning and we were noticing her bright red cheeks, but with how sensitive her skin is, it doesn't take much to flare it up. We got back to the hotel and our sleepy girl was pretty lethargic. We laid her down on the bed to change her diaper and I noticed that her eczema looked awful. I had no bendryl with me (will I EVER learn???) and set her up to watch Caillou on the computer while Brian went to find a Walgreens to pick up some Benedryl. Little did we know what the rest of the night was going to bring!
We received a gift certificate from the local Holiday Inn Express for our family down in the cities to use for a trip down there for fun when they donated water park passes to Kara's benefit. Realizing earlier last week that it expired at the end of the year, we decided that last weekend was the perfect time, before the crazy holidays start, to take this trip! We had our shopping done early, Kara had been doing great, and we were ready for a little family vacation!
We left Thursday afternoon. We got a later start because everything was taking longer than I had anticipated. We finally were able to pick the girls up from daycare and head out! We were about ten miles down the road when I realized I forgot the girls swim suits and we had to run back to the house. We turned around and not too much after that Kara threw up! She ended up fine, I figured it was from her sticking her fingers in her mouth and gagging herself. (she ALWAYS has her fingers in her mouth!!) We ran in the house and got her cleaned up and then once we were convinced she was ok, got back on the road again.
Friday we had a wonderful day. We got to the Children's Museum right as the opened and spent a few hours there. I think we all had a lot of fun there! The girls were pretty amazed at all the cool things there was for them to do! After that we decided to go to Mall of America. Both girls napped in the car during the short ride there but it was enough to rally them for the next stop! We walked around and decided to go to Nickelodeon Adventures first, to wear them out. We were checking out the ride prices and a guy stopped us offering us a ticket with 100 points on it for less than a quarter of the price so we took him up on it! Little did we know how long it would take us to use up 100 points! The girls went on ride after ride, loving all of it! We used up our tickets, finally, and decided to go back to the hotel. I think Brian and I were more tired than the girls were!
We had a great time and created lots of memories that day. We were thinking about heading to the Holidazzle Parade or just staying in and ordering pizza. We were all pretty wiped out and Kara was feeling a little off and clingy but seemed ok. She barely had an aappetite all day so that was a little concerning and we were noticing her bright red cheeks, but with how sensitive her skin is, it doesn't take much to flare it up. We got back to the hotel and our sleepy girl was pretty lethargic. We laid her down on the bed to change her diaper and I noticed that her eczema looked awful. I had no bendryl with me (will I EVER learn???) and set her up to watch Caillou on the computer while Brian went to find a Walgreens to pick up some Benedryl. Little did we know what the rest of the night was going to bring!
Saturday, November 19, 2011
Two Years Ago
We will be heading up to work the fire departments turkey bingo very soon and it's this day that once again, is bringing me back to day one of our FPIES journey. Sadly, not much has changed and we've actually gone backwards from where we were a year ago but Kara has been happy today, absolutely full of spunk and energy and is looking better than she has in months lately! We have learned so much and continue to learn more with each day about what is going on with her body. Sometimes its one day at a time but thankfully, she is thriving.
Please read last years post to see the first reaction and where we were at both one and two years ago. Today is bittersweet.
Please read last years post to see the first reaction and where we were at both one and two years ago. Today is bittersweet.
Potatoes!
Kara has a food! We continued our food trial for a good 16-17 days until we felt comfortable saying it was a pass. She loves potatoes and they seemed to love her too! She does have tummy pain here and there but I believe that is related to the eosinophilc colitis, simply causing her pain because everything that comes out of her is consistent with her baseline! :)
The other night we were ready to start something else, as Kara was getting pretty tired of potato every single day. I had some pureed sweet potatoes in the house so we went ahead with those as our next food trial. She's loving them and we are on day four of them and so far, they seem to be agreeing. My thought process as the what food to try next went from one food to the next, with no real rhyme or reason and sweet potatoes wasn't even one I was considering. I'm not real sure what happened, in a weak moment, I just decided we should go for it! I watched the clock that night like a hawk. Each little burp and fuss I questioned but Kara slept through the night that night! We'll do at least 14 days of this trial as well, which is good - hopefully I'll have done a little more prepping in the "what shall we try next" list!
The other night we were ready to start something else, as Kara was getting pretty tired of potato every single day. I had some pureed sweet potatoes in the house so we went ahead with those as our next food trial. She's loving them and we are on day four of them and so far, they seem to be agreeing. My thought process as the what food to try next went from one food to the next, with no real rhyme or reason and sweet potatoes wasn't even one I was considering. I'm not real sure what happened, in a weak moment, I just decided we should go for it! I watched the clock that night like a hawk. Each little burp and fuss I questioned but Kara slept through the night that night! We'll do at least 14 days of this trial as well, which is good - hopefully I'll have done a little more prepping in the "what shall we try next" list!
Biopsies
Last week, while down at Mayo, I received the much anticipated phone call from Kara's Children's GI Doctor. The news we received has pretty much left me at a loss of words on so many levels.
We found out that Kara's esophagus showed mild, but chonic esophagitis, consistent with that of reflux. The plan for this? A trial of preferably Prilosec, but Zantac would be ok too. I discussed how we'd trialed Prilosec in the past but Kara didn't seem to tolerate it very well. I said, at the time, that I was ok with trialing it again since we have both at home in the cabinet. Since then, I chickened out, and we are doing Zantac. At least until we can get in and see the doctor and discuss all of these findings and a plan for the upcoming months.
The middle parts of the scope were clear, in fact, looked great. It was the bottom half, the results of the sigmoidoscopy, that has put me in this pretty much silence as I try and process what has happened in the past, where we are at presently, and what is to come in the future. Kara's biopsies show Eosinophilic Colitis. I can't get a good handle on what this means, however, this is what we were supposed to be RULING OUT. This is exactly what I had in mind all those months when I begged and pleaded with the doctors at the U of MN to please scope my child so we can rule out every possibility of why she was having so much pain. All those months, they neglected to listen to me, neglected to take me seriously, neglected to take care of my child, other than pumping her full of fluids and then sending her home.
As each day passes, I'm reading a little more about this, trying to understand it. On Monday sometime, her GI doctor will be calling me to hopefully help me with these results a little further. Kara also has an appointment with the GI Nurse Practitioner on Wednesday so we will further develop a plan. Until then, we are just taking things day by day trying to get a handle on these newest findings.
We found out that Kara's esophagus showed mild, but chonic esophagitis, consistent with that of reflux. The plan for this? A trial of preferably Prilosec, but Zantac would be ok too. I discussed how we'd trialed Prilosec in the past but Kara didn't seem to tolerate it very well. I said, at the time, that I was ok with trialing it again since we have both at home in the cabinet. Since then, I chickened out, and we are doing Zantac. At least until we can get in and see the doctor and discuss all of these findings and a plan for the upcoming months.
The middle parts of the scope were clear, in fact, looked great. It was the bottom half, the results of the sigmoidoscopy, that has put me in this pretty much silence as I try and process what has happened in the past, where we are at presently, and what is to come in the future. Kara's biopsies show Eosinophilic Colitis. I can't get a good handle on what this means, however, this is what we were supposed to be RULING OUT. This is exactly what I had in mind all those months when I begged and pleaded with the doctors at the U of MN to please scope my child so we can rule out every possibility of why she was having so much pain. All those months, they neglected to listen to me, neglected to take me seriously, neglected to take care of my child, other than pumping her full of fluids and then sending her home.
As each day passes, I'm reading a little more about this, trying to understand it. On Monday sometime, her GI doctor will be calling me to hopefully help me with these results a little further. Kara also has an appointment with the GI Nurse Practitioner on Wednesday so we will further develop a plan. Until then, we are just taking things day by day trying to get a handle on these newest findings.
Friday, November 11, 2011
Mayo GI
We have been way too busy the past couple of weeks with way too much travelling. This week brought a week down at the Mayo Clinic for an additional set of eyes on Kara, since we've had so much trouble with finding a reliable GI doctor in the past. We were unsure of how our new GI team was going to be so with our family doctor, decided to keep these Mayo appointments since they were scheduled two months ago!
Monday afternoon Kara, Grandma Cindy (Brian's Mom) and I headed to Rochester, a four hour drive south of us, for the week. She had an early Tuesday morning appointment with a GI doctor and a Thursday noon appointment with allergy.
Tuesday morning, we arrived at GI and I was very impressed with Dr. Grothe, who understood exactly why we were there and had the same questions I did as far as why the U of MN did things the way they did and why they failed to scope Kara despite months of her being in pain, having symptoms, and us basically begging them to, along with our allergist. I let Dr. Grothe know that we had very recent luck in finding a new GI team, and she was just recently scoped, yet we didnt' have biopsy results back yet. It was very relieving to know that Dr. Grothe was on the same page as we were, as far as wondering what the heck was going on in the thinking of the care we received at the U, and that she would have done things the same as Children's (New GI team) had done. We heard basically the same things that we already knew, Kara is growing and doing ok on the formula, and unfortunately, there is not much else we can do right now, but she was very interested in hearing how the biopsy results came out. She gave me her email and requested I email her the results as well as let her know if we had any questions.
We got our foot in the door, so if Kara needs additional care, from what Children's can give us, we will have Dr. Grothe available, which is a relief, despite it being so far away. It is still closer than Cincinnati is, and we are still on a stand still with them, waiting to see if we need to go or not. I was trying to stay positive that Kara's scope LOOKED ok, from the human eye but reminding myself that the biopsies will be the true test of what we have to come.
Monday afternoon Kara, Grandma Cindy (Brian's Mom) and I headed to Rochester, a four hour drive south of us, for the week. She had an early Tuesday morning appointment with a GI doctor and a Thursday noon appointment with allergy.
Tuesday morning, we arrived at GI and I was very impressed with Dr. Grothe, who understood exactly why we were there and had the same questions I did as far as why the U of MN did things the way they did and why they failed to scope Kara despite months of her being in pain, having symptoms, and us basically begging them to, along with our allergist. I let Dr. Grothe know that we had very recent luck in finding a new GI team, and she was just recently scoped, yet we didnt' have biopsy results back yet. It was very relieving to know that Dr. Grothe was on the same page as we were, as far as wondering what the heck was going on in the thinking of the care we received at the U, and that she would have done things the same as Children's (New GI team) had done. We heard basically the same things that we already knew, Kara is growing and doing ok on the formula, and unfortunately, there is not much else we can do right now, but she was very interested in hearing how the biopsy results came out. She gave me her email and requested I email her the results as well as let her know if we had any questions.
We got our foot in the door, so if Kara needs additional care, from what Children's can give us, we will have Dr. Grothe available, which is a relief, despite it being so far away. It is still closer than Cincinnati is, and we are still on a stand still with them, waiting to see if we need to go or not. I was trying to stay positive that Kara's scope LOOKED ok, from the human eye but reminding myself that the biopsies will be the true test of what we have to come.
The Scope
Last Thursday Brian, Kara and I headed to Minneapolis to prepare for Kara's EGD and Sigmoidoscopy the next day at Children's Hospital. Her procedure was scheduled for 12:15 with a 10:45 arrival time which meant no formula from 4:45 on. We figured it was going to be a long mornng, which it was.
Kara woke up at 3:30 for a bottle which is about her usual time, then went back to sleep. When she awoke for the day, around 8:00, she was not a happy camper about not getting anything to drink! We fought this battle pretty continuous until they took her back for her procedure!
We arrived at Children's and were visited by many members of the surgical team. With each person, we discussed Kara's past anesthesia history to make sure everyone was aware. We signed paperwork to have additional records faxed over before the procedure and spoke at length with the GI, Anesthesiologist Nurse Anesthesist. The plan was to do the procedure with as little meds as possible since we are still unsure of what caused her scary cardiac reactions last year.
Kara ended up napping and woke up right before they were ready to take her back. I was able to carry her back to the OR again and hold her in my arms as they put the mask on her to put her to sleep. She wasn't happy and was fighting it with screaming, which only makes the medicine work better! Within seconds, she was sound asleep and I was on my way back to wait. Thirty minutes later, Dr. Aru met with us to let us know that our girl is just as cute on the inside as she is on the out! He said her insides looked good, meaning there was no visible inflammation but final results would be pending the biopsies. He explained how difficult FPIES is but again, we are doing everything we can possibly do for Kara right now, despite how frustrating the process is right now.
Kara's heart behaved itself with her pulse not rising above 150. Quite the acheivement, considering after her first scope she was in the 200's while sleeping! I rocked her and tried to console her, watching those monitors like a hawk, but she continued to do just fine, impressing everyone. The recovery went well and despite thinking we were going to have at least a one, if not two day stay after the procedure, we were on our way home at 3:00!!! We were told we'd be called later in the week with the biopsy results.
Kara woke up at 3:30 for a bottle which is about her usual time, then went back to sleep. When she awoke for the day, around 8:00, she was not a happy camper about not getting anything to drink! We fought this battle pretty continuous until they took her back for her procedure!
We arrived at Children's and were visited by many members of the surgical team. With each person, we discussed Kara's past anesthesia history to make sure everyone was aware. We signed paperwork to have additional records faxed over before the procedure and spoke at length with the GI, Anesthesiologist Nurse Anesthesist. The plan was to do the procedure with as little meds as possible since we are still unsure of what caused her scary cardiac reactions last year.
Kara ended up napping and woke up right before they were ready to take her back. I was able to carry her back to the OR again and hold her in my arms as they put the mask on her to put her to sleep. She wasn't happy and was fighting it with screaming, which only makes the medicine work better! Within seconds, she was sound asleep and I was on my way back to wait. Thirty minutes later, Dr. Aru met with us to let us know that our girl is just as cute on the inside as she is on the out! He said her insides looked good, meaning there was no visible inflammation but final results would be pending the biopsies. He explained how difficult FPIES is but again, we are doing everything we can possibly do for Kara right now, despite how frustrating the process is right now.
Kara's heart behaved itself with her pulse not rising above 150. Quite the acheivement, considering after her first scope she was in the 200's while sleeping! I rocked her and tried to console her, watching those monitors like a hawk, but she continued to do just fine, impressing everyone. The recovery went well and despite thinking we were going to have at least a one, if not two day stay after the procedure, we were on our way home at 3:00!!! We were told we'd be called later in the week with the biopsy results.
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