Okay, so this is a story
many people have been asking about, and I feel it's probably important for me to write about it while it is still fresh in my mind and can be a story that we look back on and see the power of God's hands in our life. So while both little kiddos are down for their naps, I thought I better get it in writing. Unfortunately it starts back around the time when Preslie was born.
Six weeks after Preslie was born she got a fever. Apparently this is super rare in newborns, so the pediatrician told us that if she ever hit 104 degrees that we should either bring her to the doctors or take her in to the hospital. Well on a Tuesday night, about six hours after Dr. Lanuza (our pediatrician) told us that, we were at a family dinner at my Grandparent Carpender's house, when Preslie hit 104.1 and we left to take her to the ER as teh doctor's was no longer open. They took her temperature, and she was still 104, they put us back in a room and a doctor came in and did a check up. About a half hour later they took her temp again and she was down to 102.7. The doc ordered some advil for her and said he woudl see how that did. About an hour and a half later they came and took another temperature, she was at 104.7. The ER Doctor told us that because of the spike in her fever even after the advil, they had to start doing further checking. He told us that usually the spike in temperature, and her being very limp, usually happened in children who have meningitis. They took some blood, and then kicked us out of the room so they could do a lumbar puncture. For those of you who don't know what that is, they stick a needle into your lower back, between your vertebrae, and drain out some of your cerebral-spinal fluid. If the fluid is clear generally that means an infection or bacteria hasn't hit your brain, if it's cloudy, they admit you. Well, Preslie's was clear, and after a few hours trying to grow cultures they couldn't grow anything either, and five days later there still wasn't anything. After the cultures came back that night in the ER clear, they said they didn't know what was wrong, but the fever was going down and they sent us home.
Parker and Preslie are pretty close, as I've said before, and it seems like there is always a cold being passed around our family. If we went to the doctor every time there was a fever or a runny nose, I am not exaggerating in the least when I say that we would be there every other day with one of our kids. So from that six week point on, Preslie would occasionally have fevers for a day or two, and Parker would too, abs then they wouls go away and never really concerned us.
The end of January/firs part of February, Preslie had a massive fever. With Tylenol and Advil switched off ever three hours, she was still hitting 103 most times I took her temperature. I called our pediatrician on day 3, and we went in. She checked her throat, checked her ears, her lymph nodes, her teeth, and nothing seemed to point towards what was wrong with her. The doctor finally decided that she must be sick with some sort of virus and said to give her a call in a few days if things had not gotten better. By day seven Preslie was still not better, it was getting harder and harder to do anything at work or at home, and so I called the doctor. She had me go to her downtown office on a Saturday to see what was wrong. They swabbed for RSV, they swabbed for the flu, they checked her temperature, they checked her lymph nodes, they checked everything they knew of and still nothing. Dr. Lanuza finally said that three times in the 11 years she has been a pediatrician she has had younger toddlers come in with blazing fevers that last 10 days and then go away, and they never figure out what caused them, but it never gets serious. She asked if we were comfortable waiting until day 10 at which point if the fever was not better, she would start doing blood tests to see if there was anything more serious going on.
So we left, and by day 10 the fever was gone. Sometimes doctors are geniuses.
She was still a little crabby when we went to Disneyland, but we all ended up with the flu to varying degrees, so we assumed it was that.
Well before we left for Portland we had family dinner Tuesday March 29th at my Grandparents. Preslie had been extremely whiney all that day at work and had a fever that day and a little the day before.. I talked to my Mom and said that maybe I wouldn't come in on Wednesday like we had planned because Preslie was apparently getting sick and I might be able to get all our packing. So I stayed home on Wednesday and Preslie was pretty clingy, she wanted to be held, she cried a lot . . . not full on bawling, but I could tell she was uncomfortable. Then on our trip to Portland then entire way up she just sat in her chair . . . she didn't move, she didn't eat, she didn't drink anything, she didn't sleep, she was just awake. We thought maybe she had the bug that Parker had (see previous blog where I talk about his throwing up fun we had) and called the doctor to know what we could give her to at least keep her hydrated since she wasn't eating or drinking. They said Pedialyte, which we did. She just continued to be sick. We went through so much tylenol and advil trying to keep her fever down (both of our kids have febrile seizures, so we try to stay on top of fevers getting too high, too fast).
On Tuesday, April 5th, I called Treasure Valley Peds and asked them if we could come in. The nurse I talked to said Dr. Lanuza wasn't in on Tuesdays and she felt it was better for Lanuza to be the one who sees her this time since she knows Preslie and everything, so she set up an appointment for the following day, Wednesday the 6th at 11am. We also had Parker and Preslie's yearly well check ups that Friday. At work that day I took her temperature several times, it was no lower than 101.8, except at 2pm when I took her temperature and got 97.5. I thought that was a weird temperature, and assumed that I had taken it wrong, but that got me thinking how low was too low for an infant. From my pre-med classes I knew 95 was hypothermia, but I also assumed that getting down around 96 probably wasn't so good for you either. So I wikipedia'ed it and it said anything 95 and lower was in serious need of medical attention immediately . . . good to know.
That night we went ot my Grandparents for dinner again and Preslie was sleepy, all she wanted to do was be held and wrapped in her blankie, but her temperature was still pretty high.
At 8pm we put Preslie down for bed. I took her temperature, she was at 102.7. Eric and I were talking about how great it was that we were going to the doctor's tomorrow since she obviously didn't feel well.
I finally fell asleep around 11, but kept waking up to Preslie on the monitor just whining and whining in her room. I would go in, give her back her binkie, put her blanket back on her, and leave again. But by 1:45am when she still wasn't staying asleep I thought maybe she was thirsty since she hadn't had a sippie before she went to bed. I got a sippie of apple juice and went in her room to pick her up. She was hysterical. No longer was my little girl just whining and moving around in her sleep, it was full on wailing, I don't think I had ever heard her cry like that before. Shrieking and flailing.
I had intended to just give her the sippie to have in her crib, I was always told if you go in and pick them up every time they cry, they will never sleep through the night. But I felt so bad for her, so I picked her up.
And right then my heart started racing.
She was freezing cold. And I mean freezing. I have never picked up a human popsicle before. I mean, even when people's skin is cold, you can always feel some sort of heat coming from inside, it's the heat that lets you know someone is alive and not dead. She was also moving really weird. She wasn't limp like we always are after seizures, but she wasn't really holding herself up either. Her arms and legs were moving, but they were moving in jerky motions, and always from the shoulders or from the hips, not from elbows or knees. It was like all her other joints were locked up.
I called to Eric and we laid her down on our floor to take her temperature, took her diaper off (yes rectal temperatures are the most accurate in a little on her age, and I had been torturing her like this for days) and took her temperature.
95.6
No that can't be right. I told Eric, "95 is hypothermia, this has to be wrong, can you even get lower than hypothermia without being dead?"
So we took it again.
95.3
And again.
95.3
I said we should put her in a warm bath. Eric put her in while I ran downstairs to look up the number for the hospital.
West Valley Medical Center in Caldwell is the closest hospital to our house. I have always been more comfortable with St. Luke's or St. Al's (as are most Boise natives) but we went to West Valley in the ambulance with parker when he had his seizures and stopped breathing. We were impressed, we loved teh ER doctor and they explained everything well. Plus, a girl from our ward, Zan Taylor, was a phlebotomist there, so we knew the hospital couldn't be too bad. I also knew that if Preslie's temperature was really that low, we didnt' have time to take her into Meridian, 18 miles away.
I called the ER and a lady picked up. I said, "I need to know what we should do. I just picked or 13 month old up out of her crib and she was cold, I took her temperature and it is saying 95 degrees. I'm assuming we should come in?"
She said, "There's no way. You must have taken it wrong."
"I did all my clinicals, I know how to take a rectal temperature, I wasn't taking it wrong."
"Then your thermometer must be broken. People just don't get that low in their sleep. They are in cold water for long periods of time or something."
She was very nice, she wasn't rude, and she was very convincing. I said okay and hung up the phone. I went upstairs and Preslie was still shrieking. Eric pulled her out of the tub and I told him they said the thermometer was broken. But I took it again just in case.
94.5
It would be hard for me to explain that moment. But I guess I should try.
When you take a child's temperature and it comes up at 101 or 102 or even 104, you know what to do. I mean, you get some tylenol or advil in them to reduce the fever and the body aches that come with it. It's something that you learn young as the child, and then you apply it to your own children. It almost becomes second nature. You just don't hear about what to do when it goes the other way.
I have never in my life been around someone who is hypothermic. I have never in my life heard a family doctor or pediatrician say, "If they get a fever give them tyelonol, if they go hypothermic do . . . " and follow it up with some sort of instructions. Hypothermia doesn't just happen. I mean people become hypothermic when they have spent 3 days floating in the ocean. Or have passed out in the snow for hours in Alaska.
How do you fix someone who is hypothermic? I mean I had read earlier "It requires immediate medical attention" but seriously, what is the hospital going to do?
It's a moment of sheer panic. A child breaks their arm, it gets set and casted, and within a few weeks it's healed. A child gets a fever, you give them medicine to lower it, and eventually their body fights off the bacteria/infection/virus, and they heal up, usually no harm done. A child gets hypothermia . . . . and what? . . . . what starts shutting down?
Eric took the thermometer and tried it under his tongue himself, and it came up as 98.2 Right then we knw our thermometer wasn't broken. We rushed to get Parker up and dressed, ran down to the car and headed to the hospital. We got lost, of course. But eventually we made it.
We walked into the ER. There was no one else there. Walked straight up to check in, and gave them all our insurance and information. Then a nurse was waiting to take us back. He casually walked us down the hallway, stopped to get her weighed, then took us to a room. The same room we were in with Parker two and a half years before.
Everyone was in slow motion. Not like good slow motion either, where somethign serious happens and the entire world slows down as you watch every aspect of it. No, the people were just slow. It was two in the morning and it was like the entire hospital had been asleep until we got there, and now they were still trying to wake up.
The ER doctor, a woman, came in asked us what was going on. She said to the nurse very casually, let's get a temperature, they're thermometer must be wrong.
So we held Preslie down, with all the screaming, and the stiff limbs jerking around, for yet another rectal temperature.
"93.3"
The male nurse, Anthony, said it. And it was weird, the entire room got completely still, the eye of the storm, and then it errupted.
The doctor started yelling at people, somehow yelling but still calm, to get an IV in, get a cathetar, get Xrays, get warm blakets.
I have never seen so many people in my life, and yet seen so many people who had absolutely no idea what they were doing. It became very obvious very quickly that I was not the only one who had never been around a hypothermic person, let alone a hypothermic infant.
There were two different male nurses that came in to watch, and yes I mean watch. They weren't doing anything, they were just standing there. Then an older female nurse came in,
"Hi, my name's Leanne, I'm the nurse you talked to earlier."
"The one who told me I shouldn't bring her in?"
"Yes. It's a good thing you did."
I have to give Leane some credit. I'm sure they get all sorts of looney's calling up the hospital all the time asking them ridiculous questions. And I'm sure that in teh 30 years she had been an RN, she hadn't dealt with hypothermia. It's just not something that happens often. Not to mention this is not a huge trauma hospital. So when they bring someone down from McCall who has fallen through the ice into the lake, they don't life flight them to West Valley. I have to give her credit for coming into a mother who is very worried, all be it, calm, and admit that she was the one who almost cost me my daughter's life.
Eric left with Parker about this time, he has a hard time watching people do anythign to Preslie, much less what they were about to do. He told me later that the second Parker saw so many doctor's coming into the room he started yelling "Don't hurt my baby!" And crying and trying to jump out of his arms to go help. Finally the head nurse told Eric he would need to wait in the hall.
Leanne and the ER doctor came in and did a catheter, the whole time fighting about how Leanne was/was not doing it wrong. Leanne tried to do an IV. She poked Preslie's right arm and fished around for 5 minutes (no exaggeration) looking for a vein while the two male nurses and myself held her down. Then she went to the left arm and tried. Back to the right arm. Finally the ER doc came on and said she woudl try, they brought in an ultrasoudn to help them find a vein, and ten minutes later they still didnt' have it in.
They gave up when a big chested pediatric nurse came in and sat Preslie on her bum then flattened her torso out over her legs and held her down with her big chest. The doctor was yelling at the two male nurses who seemed to be fighting over who got to be in the room to hand her things. Then they would hand her something and she would yell, "No not this one (throw the syringe at the wall) the "blah blah" one!" I just kept sitting there saying, "I hope you all have done this before" partly joking, but really being serious.
The LP finally happened, and the fluid coming out was clear. That had me both relieved because she proably didnt' have meningitis, and yet more worried because we still didn't know what was wrong.
The pediatric nurse with the big chest had another nurse, Rachel, who was pregnant come down and get an IV in. They got it in first try. All though Rachel had a mask and gown on because she told me she was worried about her unborn child.
The original nurse Anthony came in and started setting the IV fluids up, and the room was quiet for the first time. I asked him what was going on, he said it was pretty serious, and that we would be headed to the St. Luke's in Meridian as they did not have an ICU here.
They took us out for some chest xrays, where I walked past the ER Doctor, she said Preslie had a very bad UTI. I told her I had never heard of a bad UTI causing hypothermia before. She said they do crazy things.
On our way to radiology, I saw the folder the nurse was holding with one word written in very large black letters and underlined.
SEPSIS
And my heart sank. I knew that word. And it was not good.
Sepsis is a potentially deadly medical condition that is characterized by a whole-body inflammatory state and the presence of a known or suspected infection.The body may develop this inflammatory response by the immune system to microbes in the blood, urine, lungs, skin, or other tissues. A lay term for sepsis is blood poisoning. Severe sepsis occurs when sepsis leads to organ dysfunction, such as trouble breathing, coagulation or other blood abnormalities, decreased urine production, or altered mental status. If the organ dysfunction of severe sepsis is low blood pressure (hypotension), or insufficient blood flow (hypoperfusion) to one or more organs (causing, for example, lactic acidosis), this is septic shock.Sepsis can lead to multiple organ dysfunction syndrome and death.
I asked the nurse if she was septic. He said, yes, you will be going to the ICU downtown.
We went in and got xrays of her chest. And then a different nurse came and got me, and took me upstairs to the pediatric wing. I was confused how we ended up at this hospital instead of downtown. But soon the nurses came in, followed by Eric and Parker, and my parents who came down to take Parker.
I won't go into too much detail on this hospital stay. I wrote three pages, front and back in a notebook while we were there and after switching of all the weird, terrible, neglectful things that happened there. I will just say this. It continued to look as if no one knew what they were doing.
The pediatric resident prescribed heated IV fluids to go into Preslie to raise her core temperature, by the time we left at 4pm (14 hours later) she had still never gotten it.
At 5pm Preslie's temperature swung from 93.3 to 105. It took 45 minutes for someone to find some ibuprofen and get it to us so we could get her temperature down.
I have never been in a hospital where the doctor's didn't make their rounds first thing in the morning. When I asked the nurses, she snottily told us that we shouldn't expect to see her until 12:30 or 1 on her lunch break, and even then it was only if she could "fit us in" because the doctor's are "very busy." DUH! She should be very busy treating my child. We talked from 7am on about transferring Presile.
At 10:30, Dr. Loomis, a pediatrician came in. (once again proving the nurses had no idea what was going on, as she was clearly there before 12:30 and ovbiously did have time for us) She talked to us for about 20 minutes, and Eric and I started to feel more comfortable. She said that all the labs looked good so far, that her temperature was at least normal for now. She also told us how we ended up staying at West Valley instead of transferring in an ambulance. She said that when the call was made by the ER to send us to St. Luke's she had to call Dr. Janzen (the pediatric director downtown) and in their conversation he asked if she was comfortable treating Preslie, she said yes, then they discussed a treatment plan and whamo, we stayed there. She told us that if Preslie got worse, or became hypothermic again that we would be transported downtown. We also asked if Preslie was septic, Loomis said yes, she is "clinically septic" we are just trying to figue otu what is causing it. She told us the UTI was barely a UTI and was not high at all. She also said her white blood cells were 33 (they are normally 15) and her CRP which indicates inflammation, was at 15 when it is normally 0. She then took a rapid strep test after seeing some lesions in Preslie's throat, and then laid the bad news on us.
"Bad news, I'm not even supposed to be in today. It's technically my day off. And I am leaving to go out of town to Portland."
Looking back, that should have been the turning point. I thought Dr. Loomis was great, she was super nice, and very willing to help and answer all our questions. But my question is this, Why would a doctor keep a child who is in a life-threatening situation at a hospital that does not handle trauma by saying she was "comfortable" dealing with the situation if she was going to be out of town?
Anyways, the rest of the day went on an on. With Eric and I growing more and more concerned about the level of competency at the hospital. We felt like they were a great hospital if you broke your leg or needed a sliver pulled out, but as far as handling this situation, they didnt' seem to have the expertise, the knowledge, nor did their nursing staff give any sort of attention (in the 14 hours we were there, they took her temperature twice, when we asked for it, and did no other vitals - vitals are supposed to be taken every four hours - Preslie's "hugs" monitor which essentially ensures no one can steal her, was alarming for two hours before someone from labor and delivery came down to fix it, and the list goes on and on.)
By four o'clock, after som lengthy conversations with my Grandparents who came down, and between Eric and I, we decided we wanted to transfer Preslie.
I walked out of our room, which was right next to the nursing station, and lo and behold there was no nurse there (there is always supposed to be one nurse at a nursing station), so I walked down into the general admittance wing and said to their nursing station, which was swarming with nurses, "We would like our daughter to be transferred to St. Luke's Boise, how do we get the process started?"
You could absolutely have heard a pin drop. Every nurse stopped what they were doing. The one I was talking to eye's got all big and bulged. They said they woudl get the process going.
Ten minutes later the new on-call pediatrician, Dr. Babbel - an associate of Dr. Loomis - came into our room and asked what was going on.
Eric and I were beyond nice, of that I am sure. And Dr. Babbel was beyond nice. Honestly, if we were looking for a change in pediatrician, I would gladly have him see our two kids from now on. He was great. It finally just came down to a few things, we did not think that they had the capacity as a hospital, not as a doctor, to handle Preslie if she took a turn for the worse. I told him, "Across the hall you have a 3 month old with RSV. Now that is terrible, but you know what he has, and you know how to treat him. With Preslie, you don't know what she has, and you have no idea how to treat her."
He was very understanding and said he thought we would be more comfortable downtown and he would get us discharged. I have never been discharged from a hospital so fast in my life. It was crazy, and followed by more negligent behavior on the part of our nurses. But Dr. Babbel said Preslie was stable enough for us to drive her to the hospital ourselves.
We took her to St. Luke's Boise, where the whole experience was immediately better. I don't want it to get too detailed, and this post is already long, but I'll just say that if you ever have a truly terrible thing happening, go to the big hopsitals where they know how to deal with it.
Preslie did go down to 93.7 again 2am Thursday morning (24 hours after the first time) low enough that they put her on heated IV fluids, because at this hospital they knew how to do that. She went down to hypothermic temperatures 5 total times before they released us on Friday. They said that if her heart rate was slowed, or blood pressure was low, or if she had labored breathing she would be in the PICU. But because even though her temperature was low, but she wasn't having bodily issues with it she was okay. They said she was septic, but we caught it early enough.
This is the final ruling: Preslie had a viral infection that settled in her lungs. They could see evidence of it in the chest x-rays. And because all of her blood work, CSF fluids, and urine tests came back free from bacteria (yes you heard it, she didnt' have a UTI), that they knew it was a viral infection not bacterial. Her body was trying so hard to fight off the infection (hence the more than doubled amounts of WBC's and CRP's) that it got sick and they sickness got into the blood stream and made her septic. We caught the sepsis early enough that with the IV antibiotics they were giving her and the antibiotics she is taking now, it has been taken care of. Preslie was getting IV Rosefen (not sure if that is how you spell it) every 12 hours, even though they usually only give it ever 24 because her sepsis was so bad. Also, the temperature swings of 93 to 105 seem to be caused from an underlying condition, most likely with her endocrine or autonomic nervous system, that manifested during her sepsis.
All in all we had a million doctors, a couple hundred nurses, the Pediatric Intensive Care Charge Nurse, and Boise's regional Pediatric Infectious Disease doctor all interested in Preslie's case. Preslie now has to go in and get blood drawn after she finishes her antibiotics next Tuesday, and then has an appointmen with Dr. Rand the Infectious Disease doctor at the end of this month, mixed in with several follow-up appointments to our pediatrician.
Preslie's temperature is still pretty low. She is jumping from 96.9 - 97.7, so she almost always has a cardigan on. We actually found some pretty cute cotton cardigans at WalMart (of all places, never bought clothes there) for her while we were waiting for her prescription. She will be the only little girl in a sweater in August.
All in all, we are thankful for the experience. It has made us appreciate both of our little kids, and understand how precious they are, and how quickly our little family could change. Preslie has been extremely loving since she got home, and loves sitting with both Mom and Dad. And we have both been better at not getting too angry too quickly with them. And I am hoping it lasts.
More updates to come as we hear more and more what is going on with our little princess.
This is Preslie in her hospital bed at West Valley. They did not have any cribs that worked (seriously that was their words) in the Pediatric wing (because what Pediatric wing would need a crib) so they gave her a full-sized hospital bed. And she had to have her Minnie in bed with her.
Preslie had about an hour of doing really good after her first round of IV antibiotics at West Valley. She got up and ate one carrot, and one fry. That was more that she had eaten for about two days, and held her over for another two days until she ate a nutrigrain bar on Friday morning.
They had to put the IV into her hand, and so she wouldn't pull it out, they splinted up her entire hand and wrapped it in tape and gauze. It was funny when she decided that she could club people with it, and would give the nurses a good whack every time they came too close.
We got so worn out. We had three hours of sleep the night Preslie went in to the hospital, then we didn't have a chance to sleep again until 1 in the afternoon, and I was too stressed out to sleep. And with the nurses coming in it made it difficult to stay asleep longer than 15 minutes. One thing that full sized hospital bed was good for was laying in bed and sleeping with Preslie.
This is at St. Luke's where they actually had a working crib. This is her second time going hypothermic at around 2am Thursday morning. She has the heated IV fluids, but they also piled on four warm blankets. Yes, Preslie is in there under all those blankets.
Friday morning after she ate a nutrigrain bar (her favorite). She finally started getting color back, and being happy. When Parker came in with Eric she was so excited and was reaching her arms through the bars trying to grab him. I hope they always stay this close.
After every hypothermic episode she would go into a pretty good fever. She luckily never got as high as she did at West Valley, the nurses at St. Luke's were much quicker to get on top of them. She was finally sleeping in this one.
All of her lovely contraptions. We had to drag this whole thing with us when we took her on walks to see the fish tank. Potassium Chloride (instead of saline solution to help replenish her electrolytes) and it usually went in heated, two different kinds of antibiotics, and not shown in this picture are her three heart monitors, blood pressure cuff, O2 stats, and pulse. Poor little girl had so many tubes.
So this is the window seat that they have in the room at St. Luke's. Apparently they don't have cots they can bring anymore. And let me tell you, this picture does it justice. It really isn't that big, definitely smaller than a twin. Eric and I slept on it the first night together, and if we both laid on our sides, with Eric pressed right up against the window, we could both fit. And it was made out of plastic under the sheets, so if you moved on it, it made LOUD noises that woke Preslie up. But I was at least happy to have someplace to get the five hours of sleep I had the entire time we were there.
