This was my post last night - I guess I forgot to post it!
I've got the urge to push it. My future food trial list grows by the day. We haven't had a fail since the end of June, however we've had lots of ups and downs since then. With my list growing with pork, peaches, carrots, you name it, I was ready to get the show on the road, starting with carrots. We started them, hmmm, Sunday, maybe? Carrots are another food I figured would be safe, she'd had them since she was a baby, only taking a break when we went on the complete elimination diet. Tonight, at supper while getting her carrots, potatoes, and other smorgasbord items ready for her dinner I decided to go for peaches. Kara gobbled them up, couldn't get enough of them!!!
Now she's fussy, laying on the floor. She's catching a cold, cutting molars and tired so hopefully it's "just" that. Yep, JUST that. To anyone else, "just that" would be a big deal. I can handle that. It's the reactions that I can't handle. I'm really hoping she's not going to have a reaction.
Tuesday, October 26, 2010
Thursday, October 21, 2010
A Bump
At our follow up appointment with Kara's primary last week, we discussed Kara's EKG and tachycardia at length. The doctor was going to talk with the doctor from the U to have them review the EGK again, looking at something called the QT Interval. There is some family history of Long QT Syndrome, so she wanted close attention paid to this to see if it's something Kara could have, which would help explain the tachycardia.
Monday night, while making supper, I got a phone call - it came up as "clinic" which had me puzzled. I couldn't think of why they'd be calling me. It was the nurse. "The doctors discussed Kara's reaction and EKG and determined that the QT interval wasn't clear enough to make a determination either way so they decided they want the EKG done again. BUT, since it has to be read by a pediatric cardiologist anyway, they discussed it further and want her to have a pediatric cardiology consult.
Damn. We are getting hit on all sides here. Now we are waiting for paperwork to be turned in to St. Cloud Cardiology so they can review, send us a holter monitor for her to wear for a few days to get some more results and then get an appointment.
Monday night, while making supper, I got a phone call - it came up as "clinic" which had me puzzled. I couldn't think of why they'd be calling me. It was the nurse. "The doctors discussed Kara's reaction and EKG and determined that the QT interval wasn't clear enough to make a determination either way so they decided they want the EKG done again. BUT, since it has to be read by a pediatric cardiologist anyway, they discussed it further and want her to have a pediatric cardiology consult.
Damn. We are getting hit on all sides here. Now we are waiting for paperwork to be turned in to St. Cloud Cardiology so they can review, send us a holter monitor for her to wear for a few days to get some more results and then get an appointment.
Wednesday, October 20, 2010
Results
We got the results from Kara's scope. Everything was completely normal. No disaccharide deficiency, no celiac, no esosiniphil problems, nothing. This is wonderful news. I was prepared for a disaccharide deficiency, hoped we didn't have to deal with celiac as well, and figured the eosiniphil 'stuff' would be normal (I don't even understand what it is, nor did I do ANY research, that's why I have no clue what to call it besides 'stuff'!)
What I wasn't prepared for is to find out that her scope was normal. That's almost worse, the fact that we have no direction, no real answer to why she failed the pears so miserably, and yet, not in the typical FPIES fashion. I'm not sure where to go next. Dr. S. said we need to proceed to an allergist now. I let her know we had an allergist - Dr. Helm out of Maple Grove, to which she replied, good, he's a wonderful doctor. I said "Dr. Helm is the one who said she has classic FPIES" to which she replied "Than I guess that's what it is!"
Dr. S. has never once called what Kara has 'FPIES'. She has always referred to it as 'multiple food allergies'. This seems to be the norm amongst other FPIES babies and their GI doctors. For some reason, they just cannot accept the diagnosis. For Dr. S. to say that pretty much meant she was giving in - she ruled everything else out that could possibly be wrong which only left FPIES. Huh.
So, we have a call in to Dr. Helm to see what our next step is, knowing that Kara's digestive track is all good. I suspect he'll need to see her again, another consult would be wonderful, as I feel like we need some direction. I've stayed away from anything with too much sugar/fructose in it for the fear of another "pear fail" but I am ready to move on. Kara is ready to move on. She's clearly bored with her foods, even her newer ones and hasn't been eating well at all. She has, however, been asking for her ba-ba when she is hungry. I'd rather be giving her food though. I'm thinking pork, peaches, apples, wheat (which we are currently trialing, if I could get her to eat anything!) carrots, I'm ready to get the show on the road. I just wish she'd want to EAT!
What I wasn't prepared for is to find out that her scope was normal. That's almost worse, the fact that we have no direction, no real answer to why she failed the pears so miserably, and yet, not in the typical FPIES fashion. I'm not sure where to go next. Dr. S. said we need to proceed to an allergist now. I let her know we had an allergist - Dr. Helm out of Maple Grove, to which she replied, good, he's a wonderful doctor. I said "Dr. Helm is the one who said she has classic FPIES" to which she replied "Than I guess that's what it is!"
Dr. S. has never once called what Kara has 'FPIES'. She has always referred to it as 'multiple food allergies'. This seems to be the norm amongst other FPIES babies and their GI doctors. For some reason, they just cannot accept the diagnosis. For Dr. S. to say that pretty much meant she was giving in - she ruled everything else out that could possibly be wrong which only left FPIES. Huh.
So, we have a call in to Dr. Helm to see what our next step is, knowing that Kara's digestive track is all good. I suspect he'll need to see her again, another consult would be wonderful, as I feel like we need some direction. I've stayed away from anything with too much sugar/fructose in it for the fear of another "pear fail" but I am ready to move on. Kara is ready to move on. She's clearly bored with her foods, even her newer ones and hasn't been eating well at all. She has, however, been asking for her ba-ba when she is hungry. I'd rather be giving her food though. I'm thinking pork, peaches, apples, wheat (which we are currently trialing, if I could get her to eat anything!) carrots, I'm ready to get the show on the road. I just wish she'd want to EAT!
Friday, October 15, 2010
Grocery Shopping
I went grocery shopping for Kara today and came home with a massive headache. Maybe it was from mowing the lawn/leaves and my horrible allergies to both, maybe it was the fact that I was at Walmart at 5:00 PM on a Friday, maybe it was because I had my 3 year old with who thinks she's too big to sit in a cart and that she needs everything she sees, or maybe it was because I'm SICK AND TIRED of having NO options of foods for Kara.
I did my research before I left. We've played around with wheat lately so I had confidence that I could find quite a few more options of things for her. I also searched the store for some fruit options that had low fructose and that I could find in a dried fruit, fresh fruit and juice. There's no such thing. I ended up picking up some dried mango and some fresh mango, having no idea where mango is on the fructose list. I'll have to research that a little more before I actually give it to her but I had high hopes. Towards the end of the store I picked up some pineapple too, after running into that everywhere - juice, dried, canned, fresh. No clue where that is on the "list" but I'll be doing my research anyway.
I wish I had a private grocery shopper, and the trust in that person to know that they know everything that I do about what she can and can't have. Grocery shopping for Kara stresses me out more than I can even explain. Anyone up for shopping for a diet that contains only corn, banana, green beans, beef and wheat but doesn't contain egg, dairy, soy, rice or oat? I challenge you!
I did my research before I left. We've played around with wheat lately so I had confidence that I could find quite a few more options of things for her. I also searched the store for some fruit options that had low fructose and that I could find in a dried fruit, fresh fruit and juice. There's no such thing. I ended up picking up some dried mango and some fresh mango, having no idea where mango is on the fructose list. I'll have to research that a little more before I actually give it to her but I had high hopes. Towards the end of the store I picked up some pineapple too, after running into that everywhere - juice, dried, canned, fresh. No clue where that is on the "list" but I'll be doing my research anyway.
I wish I had a private grocery shopper, and the trust in that person to know that they know everything that I do about what she can and can't have. Grocery shopping for Kara stresses me out more than I can even explain. Anyone up for shopping for a diet that contains only corn, banana, green beans, beef and wheat but doesn't contain egg, dairy, soy, rice or oat? I challenge you!
Follow Up
We had Kara's follow up appointment with her primary doctor on Thursday morning. We went over, in detail everything that happened to Kara while they were looking for the paper work that the U had faxed in. Dr. M got the paperwork and the diagnosis was "adverse reaction to anesthesia". A lot that tells us... :)
She reviewed the operative report, the drugs given, all the notes from the residents and looked up reactions to each of the medications Kara was given. She was fairly certain that Kara had an allergic reaction to the Fentanyl based on the time line of reactions and her symptoms - tachycardia, edema, flushed skin, and the fact that her EKG was normal (other than the tachycardia) and that her swelling had gotten better. She said we need to stay far, far away from Fentanyl and added it the ever-expanding list of allergies.
She is questioning some sort of congenital heart problem so she's having the U review the EKG again with some additional information and she may possibly have to have another EKG done again. This is nothing to worry about for the time being - nothing too serious.
We were thinking we'd hear on some of the biopsy results today but I never received a phone call. Hopefully Monday we'll get those results back. These are the ones that we are pretty sure are all going to be negative but it will be nice to have so many things ruled out. We have a follow up appointment with Dr. S (GI) in one month, follow up with our primary in one month and I suppose now that she had this allergic reaction, I'll have to update our allergist and see what his thoughts are - if she should be seen for that.
She reviewed the operative report, the drugs given, all the notes from the residents and looked up reactions to each of the medications Kara was given. She was fairly certain that Kara had an allergic reaction to the Fentanyl based on the time line of reactions and her symptoms - tachycardia, edema, flushed skin, and the fact that her EKG was normal (other than the tachycardia) and that her swelling had gotten better. She said we need to stay far, far away from Fentanyl and added it the ever-expanding list of allergies.
She is questioning some sort of congenital heart problem so she's having the U review the EKG again with some additional information and she may possibly have to have another EKG done again. This is nothing to worry about for the time being - nothing too serious.
We were thinking we'd hear on some of the biopsy results today but I never received a phone call. Hopefully Monday we'll get those results back. These are the ones that we are pretty sure are all going to be negative but it will be nice to have so many things ruled out. We have a follow up appointment with Dr. S (GI) in one month, follow up with our primary in one month and I suppose now that she had this allergic reaction, I'll have to update our allergist and see what his thoughts are - if she should be seen for that.
Thursday, October 14, 2010
Time To Go Home!
We had a team of doctors come in throughout the morning and it was determined that Kara could be discharged with a follow up with her primary doctor this week. Our GI's partner was the main one seeing us that day. She had thought Kara was maybe given propofol which contains egg. She said stay far, far away from egg. I went over how her allergies aren't IgE and she'd had RAST testing and prick testing that all turned up negative for egg. She went back to read the operative report to see if her new set of eyes could figure out this strange reaction. She came back stating Kara wasn't even given propofol - all the drugs she had were really only mixed with saline so nothing was adding up.
Even though we got the ok to discharge that morning, it was almost noon before all the paperwork was finally completed so we could get the heck out of there. Kara was completely back to her normal self, and bouncing off the walls. She found it fun to climb up on the long window ledge and then realized it was even more fun to "slide" off it onto the cot below. If we didn't get out of there soon, we'd be there longer for a broken arm, or something worse! Her heart rate slowed as the morning went on and her swelling had gone down enough to get her shoes on. She was back, thank GOD!
As I went through all the discharge paperwork with the nurse, Kara and Brian took off to go to the parking garage to get the car. By the time I met them outside the hospital, Kara was already asleep and she slept until we were less than an hour from home. We couldn't have asked for a better trip than that!
She was SO happy to be home. We were ALL so glad to be home! My Grandparents, who had Brenna through all of this, had taken her to daycare that morning because she wanted to go and because she needed some normalcy in this mess. They were going to pick her up at her normal 3:00 pickup and bring her home for us, and to see Kara. Brenna and Kara's reunion was amazing. I wanted to cry again! They have such a close bond, Brenna is a little Mama and was SO worried about her sister. They hugged, kissed, hugged some more, laughed, and then just played and played. It was reassuring to see Kara so happy after what she'd been through in the last 36 hours!
We had Grandma's come visit last night to give hugs to Kara and to see for themselves that she was doing much better and Kara was so wiped out she was in bed by 7:00! She must have loved being back in her crib too - she slept until 6:30 this morning, not a peep!
Even though we got the ok to discharge that morning, it was almost noon before all the paperwork was finally completed so we could get the heck out of there. Kara was completely back to her normal self, and bouncing off the walls. She found it fun to climb up on the long window ledge and then realized it was even more fun to "slide" off it onto the cot below. If we didn't get out of there soon, we'd be there longer for a broken arm, or something worse! Her heart rate slowed as the morning went on and her swelling had gone down enough to get her shoes on. She was back, thank GOD!
As I went through all the discharge paperwork with the nurse, Kara and Brian took off to go to the parking garage to get the car. By the time I met them outside the hospital, Kara was already asleep and she slept until we were less than an hour from home. We couldn't have asked for a better trip than that!
She was SO happy to be home. We were ALL so glad to be home! My Grandparents, who had Brenna through all of this, had taken her to daycare that morning because she wanted to go and because she needed some normalcy in this mess. They were going to pick her up at her normal 3:00 pickup and bring her home for us, and to see Kara. Brenna and Kara's reunion was amazing. I wanted to cry again! They have such a close bond, Brenna is a little Mama and was SO worried about her sister. They hugged, kissed, hugged some more, laughed, and then just played and played. It was reassuring to see Kara so happy after what she'd been through in the last 36 hours!
We had Grandma's come visit last night to give hugs to Kara and to see for themselves that she was doing much better and Kara was so wiped out she was in bed by 7:00! She must have loved being back in her crib too - she slept until 6:30 this morning, not a peep!
Inpatient
We got to our room and spent the next few hours holding Kara, watching the monitors and talking with the various staff that came in. Kara really wasn't settled very well and her heart rate was still way too high. She was really irritable about her feet so the nurse checked her IV out thinking it might be infiltrating so she stopped it while we waited for the resident to come in. At that point we noticed that her right leg was even more swollen than her left (IV) leg. The resident said he didn't want them to pull the IV yet given her dehydration history and the fact that she still wouldn't take a bottle. He got some more information from us and told us he'd talk with the chief and be back in. At this point something dawned on me - she's having heart problems and now swelling in her legs. I panicked so bad, thought the worst. I was sure we were going to find out she has some sort of major heart problem. The resident came back in to talk about this and I was crying. I asked him what he thought - what this meant. He said they weren't sure but it didn't seem like it was anything TOO serious. I asked if they could run an EKG and he agreed that would be a good idea. We had been able to put Kara down for a little snooze in the crib. I had her on her tummy and her pulse was stable but still somewhat high - I think it was in the 160's but definitely an improvement. He wanted to roll her over to get a good listen to her so we carefully rolled her without waking her and in just that little movement she jumped up to 210 again. I was so glad he was in there to see that!
I hadn't talked to many people at this point, mostly for the fear of starting to bawl at trying to talk about it and the constant in and out of nurses, doctors, other staff. We were communicating with most everyone by quick text messages - "she's out of surgery, everything good", "going home soon, doing great", "having heart problems" "being admitted"...
I was assured by some family members in the medical field that we were in a great place, we had a good team working with us and the fact that she wasn't in ICU was a good sign. After these conversations I seemed to settle down. Kara seemed to perk up a little bit as well. In fact, we were finally able to put her down. Child Life had brought in a mobile for the crib and some toys so we set Kara in there and she played nice and content for a while. She was still in so much pain with the swelling in her legs so we sat her in there and didn't move, just played in one spot. Auntie Laura and Lily stopped by for a visit so that was really nice to have some distraction!
She had her EKG done and cried as we held her down to get all hooked up. I knew they were quick, but seriously, she hooked up the last lead and it was over, just like that. We would find results out from that after it was interpreted by the peds cardiologist. The resident came back in shortly after and let me know that the EKG looked normal, other than the tachycardia (fast heart rate) that we already knew she had going on. He said it all looked like it was beating regular, when it should be and from the right places. WHEW. Finally able to relax about that one! The swelling was still a concern. We went over everything again for what seemed like the 100th time that day. We couldn't pinpoint anything specific but at that point they were pretty sure she was having an allergic reaction to one of the drugs she was given in anesthesia which was causing the swelling, the flushing of her skin and the fast heart rate. He decided to give her some Motrin after I assured him she was fine with it, as well as benedryl after we remembered that she HAD had it before and could tolerate it.
We got Kara all tucked in for the night probably around nine or so and at that point, found out we were getting a roommate because they were so full. I really wondered how the heck that was going to work but realized there was nothing we could do about it. I've never felt so powerless in my life! My baby was STUCK in the hospital, not stable enough to even THINK about getting her out of there yet and I worried about how we were going to make it through the night, especially getting a roommate now. Brian and I squeezed in on the twin size cot that fit perfectly between the wall and the crib so at least we wouldn't have to worry about falling off! Kara slept so well. I on the other hand, barely slept. I had this horrible fear that because she was sleeping so well that something was wrong. I couldn't relax even with the monitors on her - what if THEY failed?! Her pulse was so good while she was sleeping through the night. It was in the low 100's, even down to the 90's. She slept through them checking on her and getting vitals every two hours. At four they came in with the scale to get her weight, (WTH!) but she had been stirring for a while. We gave her a bottle but as she drank that, up the pulse went, back up into the 170's. Damn. Maybe we aren't over this yet! Kara finished her bottle and went back to sleep, we all slept until shortly after 7:00!
We took Kara down to the toy room when she woke up so the girl next door and her family could get a little bit of rest. Once we got down there, Kara started walking around! Her feet were still pretty swollen but definitely an improvement! She got down and played for quite a while. She wasn't hooked up to her monitors so I was a little nervous but this was a major improvement from our sick little girl the night before! Things can only be getting better!!!
I hadn't talked to many people at this point, mostly for the fear of starting to bawl at trying to talk about it and the constant in and out of nurses, doctors, other staff. We were communicating with most everyone by quick text messages - "she's out of surgery, everything good", "going home soon, doing great", "having heart problems" "being admitted"...
I was assured by some family members in the medical field that we were in a great place, we had a good team working with us and the fact that she wasn't in ICU was a good sign. After these conversations I seemed to settle down. Kara seemed to perk up a little bit as well. In fact, we were finally able to put her down. Child Life had brought in a mobile for the crib and some toys so we set Kara in there and she played nice and content for a while. She was still in so much pain with the swelling in her legs so we sat her in there and didn't move, just played in one spot. Auntie Laura and Lily stopped by for a visit so that was really nice to have some distraction!
She had her EKG done and cried as we held her down to get all hooked up. I knew they were quick, but seriously, she hooked up the last lead and it was over, just like that. We would find results out from that after it was interpreted by the peds cardiologist. The resident came back in shortly after and let me know that the EKG looked normal, other than the tachycardia (fast heart rate) that we already knew she had going on. He said it all looked like it was beating regular, when it should be and from the right places. WHEW. Finally able to relax about that one! The swelling was still a concern. We went over everything again for what seemed like the 100th time that day. We couldn't pinpoint anything specific but at that point they were pretty sure she was having an allergic reaction to one of the drugs she was given in anesthesia which was causing the swelling, the flushing of her skin and the fast heart rate. He decided to give her some Motrin after I assured him she was fine with it, as well as benedryl after we remembered that she HAD had it before and could tolerate it.
We got Kara all tucked in for the night probably around nine or so and at that point, found out we were getting a roommate because they were so full. I really wondered how the heck that was going to work but realized there was nothing we could do about it. I've never felt so powerless in my life! My baby was STUCK in the hospital, not stable enough to even THINK about getting her out of there yet and I worried about how we were going to make it through the night, especially getting a roommate now. Brian and I squeezed in on the twin size cot that fit perfectly between the wall and the crib so at least we wouldn't have to worry about falling off! Kara slept so well. I on the other hand, barely slept. I had this horrible fear that because she was sleeping so well that something was wrong. I couldn't relax even with the monitors on her - what if THEY failed?! Her pulse was so good while she was sleeping through the night. It was in the low 100's, even down to the 90's. She slept through them checking on her and getting vitals every two hours. At four they came in with the scale to get her weight, (WTH!) but she had been stirring for a while. We gave her a bottle but as she drank that, up the pulse went, back up into the 170's. Damn. Maybe we aren't over this yet! Kara finished her bottle and went back to sleep, we all slept until shortly after 7:00!
We took Kara down to the toy room when she woke up so the girl next door and her family could get a little bit of rest. Once we got down there, Kara started walking around! Her feet were still pretty swollen but definitely an improvement! She got down and played for quite a while. She wasn't hooked up to her monitors so I was a little nervous but this was a major improvement from our sick little girl the night before! Things can only be getting better!!!
The Vikings!
When it was time to transport up to the floor, a transport aide came down to get us. I chose to walk, carrying Kara in my arms. The aide pushed the IV pole and Brian followed with the stroller and our belongings. We headed up the elevator to the fifth floor. We got off the elevator and there was some commotion. There was a guy in the hall wearing a Vikings jersey as well as a big light shining on him and a big TV camera. I looked at Brian - is that? really? do you think? who? As we got closer he said "it's Adrian Peterson!" Holy S*&T! REALLY? What the...WOW! We were so star struck!
One of the nurses said they come up once in a while to visit with the peds patients. After he was done with his interview Brian said "Excuse me, Mr. Peterson? Would you take a picture with my baby girl?" "SURE!" he replied! He came up to us, put his arm around us and pictures were taken. HOW COOL. We needed that little break in the day, that's for sure! We headed down our wing and there was another one doing an interview - this time it was Ben Lieber. WOW AGAIN! We headed to our room to get situated but with these football stars there it was pretty chaotic. Brian was in the doorway checking things out and I was stuck! We had the IV pole plugged in and Kara was all hooked up to the heart monitors so we had a leash of about 5 feet! I said "I want to see!" and one of the publicity girls said they'll come in! Three guys came in next - I had no idea who two of them were and one of them is a new guy this year - Greg Camarillo. They visited with us for a little while and Kara LOVED them! She loves men anyway and these guys were HUGE! They talked to her and we got some smiles out of her. When we went to leave I told her to blow them kisses and she did - hamming it right up again! They loved her! We received a license plate thing that they all signed. How neat is that that they come up and visit with the sick kids like that? They were so nice, so sincere!
Phase 2
We were brought to Phase 2 shortly after for the remainder of her recovery. Phase 2 started out as normal as can be for a baby coming out of anesthesia. They had said if she didn't settle by 11:15 we could give her some tylenol because we knew she had a sore throat but other than that she shouldn't have any pain. I put on the call light right at 11:15 to request the tylenol. It was 11:50 when they finally got it to her. I was getting so irritated because I knew they could hear us struggling in the room! She gave her the tylenol finally and said to give her 1/2 an hour for it to kick in. The nurse called anesthesia and they said to give her another dose of fentanyl. We went from thinking we'd be going home within the hour to being there for another hour. Once they get a narcotic they have to stay an hour for monitoring. This is when we really started paying attention to this high heart rate that she had. We had a new nurse at this point - thank goodness - and she was really good about constantly coming in to check on her. She even left our door open so she could make sure she could hear Kara and us in case there were any problems. The poor other patients in phase 2!
I don't remember the time frame of much at this point. The red light was blinking and the alarms were going off pretty constant because of her heart rate though. I remember watching it - it had been in the 170's, and her oxygen level had been 98-99%. Her heartrate started climbing - 180's, 190's 200's and her 02 level started dropping - 95%, 92%, then her pulse hit 214 and 02 hit 85%. I calmly said to Brian "get the nurse. Put on the call light. GET THE NURSE." The nurse heard us and came running in. Kara was SO not with it. They paged anesthesia right away and the three of us tried our hardest to keep her awake - her eyes were rolling back in her head and we just kept her moving - took her blood pressure to keep her awake and to check that out and then the anesthesiologist student came in. We all tried to put the pieces of the puzzle together but had no idea what was happening. Nothing was adding up. I remember a lady coming in and talking to the nurse - after she left I asked her who she was. She was a nurse coordinator/liaison and she told her that we could be admitted if necessary, that would be no problem. The nurse told me we aren't talking about that yet, we're going to give her some time. Throughout the next few hours we had our surgeon come in a few times, the anesthesiologist resident, the anesthesiologist herself, all to keep an extra eye on Kara. The anesthesiologist was so nice. She explained that that's why they warn us so much in preop of the way they come out of the anesthesia and that's why they don't like to give babies hardly any extra drugs. She said because of Kara's allergy history they used as little of everything as possible. Then Dr. S. came in again and explained that because we didn't know what was going on with Kara it was best for her to be admitted for observation of her vitals. She wasn't comfortable sending us home, especially because we live so far away. She left the room, I looked at Brian and started to cry! I had held it together pretty well but to know now how worried they were about her, I really started to panic! Lab came in for a blood draw and x-ray came in to do an abdomen xray to make sure there was no puncture or anything from the surgery that could be causing problems. All this came out just fine.
Even though Kara was extremely fussy, she seemed most irritable at her feet. I kept thinking it was because of the IV (in her foot), the blood pressure cuff (on her other leg) and the O2 sensor that was on the IV foot. She screamed each time they took her pressure which was to be expected but it seemed that anytime a cord pulled even the slightest bit, or her foot got bumped, she'd scream! I kept thinking there was something wrong with her IV and checked out her IV. Her foot looked a little puffy so we had the nurse check it out thinking maybe it was going bad. Her other foot actually was a little puffier than her IV one so we figured she was just fine. She has somewhat chubby feet but I never remembered them being that chubby! We put it off as irritability and were on our way to the floor.
I don't remember the time frame of much at this point. The red light was blinking and the alarms were going off pretty constant because of her heart rate though. I remember watching it - it had been in the 170's, and her oxygen level had been 98-99%. Her heartrate started climbing - 180's, 190's 200's and her 02 level started dropping - 95%, 92%, then her pulse hit 214 and 02 hit 85%. I calmly said to Brian "get the nurse. Put on the call light. GET THE NURSE." The nurse heard us and came running in. Kara was SO not with it. They paged anesthesia right away and the three of us tried our hardest to keep her awake - her eyes were rolling back in her head and we just kept her moving - took her blood pressure to keep her awake and to check that out and then the anesthesiologist student came in. We all tried to put the pieces of the puzzle together but had no idea what was happening. Nothing was adding up. I remember a lady coming in and talking to the nurse - after she left I asked her who she was. She was a nurse coordinator/liaison and she told her that we could be admitted if necessary, that would be no problem. The nurse told me we aren't talking about that yet, we're going to give her some time. Throughout the next few hours we had our surgeon come in a few times, the anesthesiologist resident, the anesthesiologist herself, all to keep an extra eye on Kara. The anesthesiologist was so nice. She explained that that's why they warn us so much in preop of the way they come out of the anesthesia and that's why they don't like to give babies hardly any extra drugs. She said because of Kara's allergy history they used as little of everything as possible. Then Dr. S. came in again and explained that because we didn't know what was going on with Kara it was best for her to be admitted for observation of her vitals. She wasn't comfortable sending us home, especially because we live so far away. She left the room, I looked at Brian and started to cry! I had held it together pretty well but to know now how worried they were about her, I really started to panic! Lab came in for a blood draw and x-ray came in to do an abdomen xray to make sure there was no puncture or anything from the surgery that could be causing problems. All this came out just fine.
Even though Kara was extremely fussy, she seemed most irritable at her feet. I kept thinking it was because of the IV (in her foot), the blood pressure cuff (on her other leg) and the O2 sensor that was on the IV foot. She screamed each time they took her pressure which was to be expected but it seemed that anytime a cord pulled even the slightest bit, or her foot got bumped, she'd scream! I kept thinking there was something wrong with her IV and checked out her IV. Her foot looked a little puffy so we had the nurse check it out thinking maybe it was going bad. Her other foot actually was a little puffier than her IV one so we figured she was just fine. She has somewhat chubby feet but I never remembered them being that chubby! We put it off as irritability and were on our way to the floor.
Wednesday, October 13, 2010
The Procedure
Brian and I went to find some breakfast up at the cafeteria. We ordered our food and sat down to eat. I was pretty much at ease but as I watched the clock I got anxious to get back. We had just got checked in in the waiting room and hadn't even sat down yet and Dr. S. was out to talk to us! She told us that the procedure went wonderful. Kara slept until they laid her on the OR table, where her eyes popped open but they had the gas ready so she went right back to sleep, only this time, REALLY slept! They started her IV once she was sleeping so she had no trauma from that. My poor baby has my wonderful veins - 3 pokes for an IV start, and she was already sleeping! Dr. S. said that everything looked really good - no obvious ulcers, polyps, anything out of the ordinary but stressed that that was by the naked eye. They took quite a few biopsies and we won't know anything until those come back. She will be giving me a call on Friday, hopefully to discuss those results. The dissacharride biopsies take a little longer (and that is the most important one at this point!) so hopefully by mid week she'll be calling us about that one. She said they should be out soon - it was going to take longer than normal because of the intubation and as soon as she woke up they would get us right back to be with her.
Brian and I sat down and chatted about the findings and within minutes they called us back. We walked in the door and I could hear my baby crying! I was prepared - both from what the nurses and anesthesiologist had told us and from going through anesthesia with Brenna last year with her tonsils and adenoids. Kara was being held by one of the nurses and spotted me and came right to me. I tried to settle her but she was having nothing of it. He said sometimes they are just extremely agitated. I remember her heart rate being around 200 - he explained that it was because she was so worked up. They brought a rocking chair in and I tried to get her settled. Finally they decided to give her some fentanyl because she just couldn't seem to relax! I remember thinking "good, this will relax her enough to take a little nap and hopefully wake up a little more calm." The fentanyl stopped the constant crying (because of being intubated she was so hoarse, her cry sounded so painful!) but she still didn't seem to be "at ease". We were in phase one of recovery for quite a while trying to get her to settle and watch her blood pressure (it was running pretty high) and her pulse. Nothing seemed to out of the ordinary at this point for a baby coming out of anesthesia - the nurse told me she was on the higher end of the spectrum of babies being agitated though.
Brian and I sat down and chatted about the findings and within minutes they called us back. We walked in the door and I could hear my baby crying! I was prepared - both from what the nurses and anesthesiologist had told us and from going through anesthesia with Brenna last year with her tonsils and adenoids. Kara was being held by one of the nurses and spotted me and came right to me. I tried to settle her but she was having nothing of it. He said sometimes they are just extremely agitated. I remember her heart rate being around 200 - he explained that it was because she was so worked up. They brought a rocking chair in and I tried to get her settled. Finally they decided to give her some fentanyl because she just couldn't seem to relax! I remember thinking "good, this will relax her enough to take a little nap and hopefully wake up a little more calm." The fentanyl stopped the constant crying (because of being intubated she was so hoarse, her cry sounded so painful!) but she still didn't seem to be "at ease". We were in phase one of recovery for quite a while trying to get her to settle and watch her blood pressure (it was running pretty high) and her pulse. Nothing seemed to out of the ordinary at this point for a baby coming out of anesthesia - the nurse told me she was on the higher end of the spectrum of babies being agitated though.
Pre-Op
Lots has happened in the last 36 hours or so, so this may take a few posts! The good news is that we are home and Kara is doing well.
Our night went smooth. Kara slept until 2:45 which was perfect since she could have a bottle up until 3:30. She drank a bottle and went right back to sleep. She woke up about 5:45 and was ready for her day! We packed up and made the walk down to the U since it was so beautiful outside!
We got Kara all registered and they took her back to preop. She's such a good little patient! She let them check her all out and was a total ham. We had the whole team come in and introduce themselves to us and did questions and answers back and forth. By whole team, I mean the preop nurses, the anesthesiologist, her student, the nurse anesthetist, her student, and the OR nurses. We were explained numerous times that the drugs they use for infants cause them to come out of the anesthesia very quickly so they have a really hard time with it - they are usually very agitated and can stay like that for a few hours. They didn't want us to be surprised if that was the outcome of Kara. They let us know that because of her allergy history they would be using as little as possible of each drug and made special notes to not let anyone feed her but us so she wouldn't get any juice or something she can't have. They had a big sticker on her chart!
She got to play in the toy room while we went about all of this and had a lot of fun!
Her surgery time was 9:30 and the time from 9:00 until then seemed like an eternity. Kara started getting really tired and actually put her head down on my shoulder to fall asleep! We talked with the OR Nurse and decided to hand her off before walking into the OR so she'd have no idea. This was working out better than we could have planned it! We did the hand off without as much as a stir from Kara and off they went! We knew we had roughly an hour before she'd be back because they had to intubate her because of her age and size and explained that even though the procedure itself would take about 20-30 minutes, everything else takes a lot longer. With that, we watched the nurse walk down the hall and we turned our backs to head the other way to go find some breakfast.
Our night went smooth. Kara slept until 2:45 which was perfect since she could have a bottle up until 3:30. She drank a bottle and went right back to sleep. She woke up about 5:45 and was ready for her day! We packed up and made the walk down to the U since it was so beautiful outside!
We got Kara all registered and they took her back to preop. She's such a good little patient! She let them check her all out and was a total ham. We had the whole team come in and introduce themselves to us and did questions and answers back and forth. By whole team, I mean the preop nurses, the anesthesiologist, her student, the nurse anesthetist, her student, and the OR nurses. We were explained numerous times that the drugs they use for infants cause them to come out of the anesthesia very quickly so they have a really hard time with it - they are usually very agitated and can stay like that for a few hours. They didn't want us to be surprised if that was the outcome of Kara. They let us know that because of her allergy history they would be using as little as possible of each drug and made special notes to not let anyone feed her but us so she wouldn't get any juice or something she can't have. They had a big sticker on her chart!
She got to play in the toy room while we went about all of this and had a lot of fun!
Her surgery time was 9:30 and the time from 9:00 until then seemed like an eternity. Kara started getting really tired and actually put her head down on my shoulder to fall asleep! We talked with the OR Nurse and decided to hand her off before walking into the OR so she'd have no idea. This was working out better than we could have planned it! We did the hand off without as much as a stir from Kara and off they went! We knew we had roughly an hour before she'd be back because they had to intubate her because of her age and size and explained that even though the procedure itself would take about 20-30 minutes, everything else takes a lot longer. With that, we watched the nurse walk down the hall and we turned our backs to head the other way to go find some breakfast.
Monday, October 11, 2010
Tomorrow
Tomorrow is our big day. The day I've been waiting for for a long time. We got down here this afternoon and since the weather was so nice we thought we'd go for a walk and do a little exploring. We felt a little out of place on the U Campus on a Monday afternoon pushing a baby in a stroller! :)
We walked a few blocks and I showed Brian the building that Kara's clinic was in and then we walked around the corner to the Children's Hospital and inside just to get a feel for things in things in the morning. I think I'm ready for this but I feel like I can't be prepared enough.
After that we were clueless as to what we were going to do in downtime Minneapolis with the baby and we needed to eat so we went to visit Auntie Laura and Lily for some playtime and supper for Mom and Dad. We chatted on the phone with Brenna a few times - she misses us but she's been busy. She was a little jealous when she found out that Kara got to see Cousin Lily and she didn't but she gets to stay at Nanny and Grandpa's and there's nothing better than that!
We check in at 7:30 tomorrow morning. We've gotten the bath off of our checklist so far and Kara is playing happily right now. We have the prep to do yet...Ugh. Not sure how or when we are going to go about that. I'm putting it off! She can have a bottle up until 3:30 this morning so I'm hoping she'll wake up and drink one so we don't have a mega-meltdown in the morning.
Procedure time is 9:30 and they said to allow one hour, twenty minutes. We won't know much until all the biopsies come back which I'm assuming could be a few weeks but I think we should get a few answers tomorrow - inflammation, how much, things like that...
Til then, I'm going to sit back and try and relax. I have a feeling it's going to be a long night and an even longer day tomorrow.
Tuesday, October 5, 2010
Control
I can't seem to get control over Kara's symptoms lately. I think we may have pushed our last few food trials a little too quick. Kara got home from daycare today and was so out of sorts - we had numerous meltdowns and then in bed at 7:00. She's thrown me for a loop - a nasty diaper one day and the next, just fine with no rhyme or reason to what's going on. I'm thinking I need to cut back a few steps and start over, a little more closely and slowly.
One week from today her scope will be over with. At this point, I'm sure it's going to show inflammation of some sort. She's been a mess! Her skin is usually a telltale sign of some sort of reaction coming up and she has new eczema patches coming up daily that I can't seem to get a handle on. I'd worry a little more but with the scope so close I'm more and more anxious for answers. This sugar intolerance is more of a pain to deal with than the FPIES is because it's just more guessing games and we have enough of those!!
One week from today her scope will be over with. At this point, I'm sure it's going to show inflammation of some sort. She's been a mess! Her skin is usually a telltale sign of some sort of reaction coming up and she has new eczema patches coming up daily that I can't seem to get a handle on. I'd worry a little more but with the scope so close I'm more and more anxious for answers. This sugar intolerance is more of a pain to deal with than the FPIES is because it's just more guessing games and we have enough of those!!
Friday, October 1, 2010
Fall Fun
The leaves changed colors quickly and are falling from the trees even faster. This is my favorite time a year with that, and I can't get enough outdoor pictures.
FPIES United Family Fund
A fund has been put together through Children's Hospital of Philadelphia for FPIES research and education. CHOP is the leading FPIES Hospital in the US at this point. A fellow FPIES family was approached to help and through their connections, the FPIES UNITED FAMILY FUND was started.
This is going to be huge, but a lot of funds need to be raised before this can even begin. Moms all over the country have begun fundraising to get these funds going. There is a really neat, informative brochure in the works to raise awareness and families are bringing this information to their pediatricians, allergists and GI's to gain all the awareness possible so that hopefully, down the road, no family will have to go through what we've had to endure and that the professionals they trust the most with their childs health will be able to help them.
We were asked for our ideas in collaborating the website. We supplied pictures of our babies for the "faces of FPIES" and also were asked to write about what FPIES means to us, to have it displayed on the site. There is also a guestbook which many mom's have listed their personal blogs to help gain a little more awareness of each of our individual stories.
When you have an extra moment, please check out the FPIES United Family Fund website. If you are able, please make a donation to help Kara and all of the other families struggling with FPIES.
For more information on the fund, you can also visit our Facebook Site or just search "fpies united family fund.
When I was asked what FPIES means to me, one word came to mind. I dwell on this one word daily. I will be posting how significant discipline is in our lives in the near futre. I think that one word sums it all up for us. Lately it seems that that's all life is all about.
This is going to be huge, but a lot of funds need to be raised before this can even begin. Moms all over the country have begun fundraising to get these funds going. There is a really neat, informative brochure in the works to raise awareness and families are bringing this information to their pediatricians, allergists and GI's to gain all the awareness possible so that hopefully, down the road, no family will have to go through what we've had to endure and that the professionals they trust the most with their childs health will be able to help them.
We were asked for our ideas in collaborating the website. We supplied pictures of our babies for the "faces of FPIES" and also were asked to write about what FPIES means to us, to have it displayed on the site. There is also a guestbook which many mom's have listed their personal blogs to help gain a little more awareness of each of our individual stories.
When you have an extra moment, please check out the FPIES United Family Fund website. If you are able, please make a donation to help Kara and all of the other families struggling with FPIES.
For more information on the fund, you can also visit our Facebook Site or just search "fpies united family fund.
When I was asked what FPIES means to me, one word came to mind. I dwell on this one word daily. I will be posting how significant discipline is in our lives in the near futre. I think that one word sums it all up for us. Lately it seems that that's all life is all about.
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