Back to the PICU again

Sorry for taking this long to update.  Because Mallorie continued to have seizures in the local hospital, despite having increases made in her seizure medications, the neurologist from Houston felt she should be transferred back to Texas Childrens, where she had been Feb 11-March 6. This time we spent most of the week in a 4 bed ward in the PCU (a floor that has monitoring of her vital signs just as the PICU has, but is for children who are somewhat stable). Gradually, they seemed to get the seizures in control, and we got her scheduled for a surgery to tighten the top of her stomach to prevent vomiting and reflux, because her newest seizures sometimes cause some reflux and vomiting, and we don't want her breathing in the stomach contents. She might possibly already have a pneumonia from this. She also tends to have difficulty breathing and her oxygen level will go down when the seizures cause refluxing. This surgery has been discussed in the past, but she did not seem to have respiratory problems coming from reflux in the past. But since February, Mallorie is different, and this is clearly needed. The surgery has been scheduled for April 6.


A couple of days ago, they transferred Mallorie to the neurology unit, because she was doing so much better in terms of not having had reflux or vomiting for awhile, and her seizures were much less frequent. Just a couple of hours before the transfer, she had a procedure done that triggered a LOT of gagging and vomiting, and the doctor doing the procedure saw her aspirating (breathing it into her lungs) while he was looking with a scope. Since having that procedure (which I think we will never allow to be done again), Mallorie began refluxing severely, and then she began having seizures again, and even giving her a few extra doses of seizure medications didn't stop them. She also began having dramatic color changes and a lot more trouble breathing, so she was transferred to the PICU last evening a little before 7 pm. The same place where we spent most of the last hospitalization. She had a rough night, with a couple of seizures, more refluxing, and agitation. She was unable to sleep all night, and even though we attempted to tape her eyelids closed just to protect her eyes from drying from the oxygen she was receiving, she still kept her eyes open and was wide awake with hiccups all night. By morning, though, she fell asleep. One of the doctors today explained that any stress - such as an illness, or the increased reflux and struggles to breathe - could make her more likely to have seizures start up again, even though her seizure medications had been working for her before. So the hope is that helping her to get past whatever started this happening again will allow the seizures to stop. Right now, she doesn't seem to be having seizures, but she is having reflux and is running a fever, and they've tested her some viruses. Right now she is needing quite a bit of extra oxygen, but she is breathing on her own and resting.

An emergency medicine doctor who is working in the PICU for the next 24 hours came in to introduce herself because she was very interested in Mallorie. Her background is cardiology, and she said when she read, "Trisomy 13" (I guess in her record, since we never had genetic testing to confirm this), she wanted to know if Mallorie had a VSD, which is an abnormal hole in a particular area of her heart. I smiled, and said, "As a matter of fact," and went on to tell some of Mallorie's story. When I told her that all of the holes in her heart had closed, she said, "That's extremely unusual." That's something I seem to forget, sometimes, and it was good to be reminded. We talked about Mal's cardiologist's strong belief in good nutrition to allow for the holes to continue to close, she said, "Maybe it was all that breastmilk." I had to tell her that I know it sure helped, but also that a lot of prayer has gone into Mallorie's life.

There have been many times when I've wondered how anyone else can truly learn from Mallorie as we have. I know that John and I and our other children have gained so much from having Mallorie in our family. Our kids love her passionately, and have been changed by loving her. There is a compassion now developed in them that is beautiful to see. But I have verbalized in the past that it feels like the full benefit of Mallorie is sometimes "wasted" on others. I thought that particularly some of her medical specialists might never get the full benefit of knowing her. But today, I got a glimpse of something else. Mallorie seems to have some work to do in her life here on Earth, and a part of it may be to teach others to think a little outside the box.

While I beginning to write this, the same doctor just came in to ask some more questions. She said, Mallorie is 3, and children that age aren't usually eating a full liquid diet. She started thinking aloud about the idea that a common treatment for reflux is to thicken feedings, and since she had heard that Mallorie is normally fed baby foods through her g-tube, in addition to breast milk, she thought that giving her solids by tube would be preferable to anything liquid right now. I know my mouth must have been open, because telling these doctors that we feed her "real food" through her tube has always been one of the things that help me to see the crazy in the doctors' (and sometimes nurses') eyes. And I can't tell you how many times I have to explain the whole donor breastmilk idea. Yet this doctor kept talking out her rationale, and asking for my input. All I could think was, Really? This doctor is suggesting we you feed this tubefed baby pureed foods instead of a formula for tubefeeding? She also asked what I thought about giving breastmilk for a part of her nutrition, "for the immunoglobulins." :)

Conclusion:  This post has been several hours in the making, so I'll summarize the rest of the day. Mallorie continued to have more frequent seizures, and a beautiful team of physicians, nurses, and respiratory therapists spent a lot of time in her room, planning, discussing options, changing plans, debating. A series of interventions were used which ultimately stopped the unending seizures, with the end result that Mallorie is now zonked, and finally able to catch up on the rest that she missed last night, while Hannah and I split the night hours with her. (John had not been feeling well, so we kept him away just in case he might be sick.) There is a back-up plan in mind if this is only a temporary calm, but I think it's been going on now for at least a couple of hours. The back-up plan may or may not result in a tube being placed in Mal's airway and her being put on a ventilator, and even if that happens, there are benefits that could come along with that possibility. Her fever is down, and she is breathing peacefully, although she does require oxygen through a mask. Or at least, no one is willing to test her without it yet. :)

Today's physician team plans to ask the team tomorrow to ask the surgery group if they would consider doing her surgery sooner than April 6. The longer that she has to wait to have the surgery, the more they feel she is at risk of having aspirations. Already they've canned the idea of feeding her, and she is receiving TPN (nutrition through her IV). Someone said the surgery group had hoped Mallorie would have longer on the antibiotic she is receiving, before taking her to surgery. So there are pros and cons of moving up the date and of keeping the surgery at the scheduled time, and truthfully, I believe only God knows which is best, so I'm praying He will work out for Mallorie only what is best for her. Since that's what He has always given her (sometimes visible to us only in retrospect), John and I are trusting this time will be no different.

Please pray for God's continued protection of Mallorie and for wisdom for those caring for her. And also please pray for our other children during this time when the family cannot be together. And please pray that I am able to sleep well in the coming nights, because I cope a lot better, and tend to be a lot nicer when I get enough sleep.

Back in the hospital again.

Mallorie has been back in the hospital since Saturday evening.  I just haven't had blog access until we got transferred back here to Houston (yesterday), and yesterday was such a blur ... and today I was feeling so sleep-deprived that this is the first time I have been able to get to posting.

Mal had been having more seizures even with her medication dosages being increased, and with her seizures she was having vomiting/reflux, so we were worried about her breathing.  We were able to spend the first few days (through Wednesday) in a local hospital where Mallorie and we always receive such gentle care, so that was a huge blessing.  Eventually, though, her neurologist in Houston felt that she needed to be out here for them to work on getting her seizures controlled.  We are currently in a 4 bed room, and there is no sense that this will change anytime soon, because each time a room opens, a new patient is admitted into that room. I'm blessed that Hannah and John are here, so today I put earplugs in and tried to nap some in a chair next to Mallorie's bed, because last night there were so many discussions going on throughout the night about her seizures, and the lack of sleep was starting to catch up with me. 

Please pray that tonight is quieter, because it was pretty loud (mostly staff conversations) in the room and in the hallway all night, and I don't want to use earplugs during the night and possibly miss hearing a change in Mallorie's breathing that could let me know she is having a seizure and might need to be suctioned. 

She got a PICC line, now. 

I know this is not much, but I have to get back to her bedside.

What a great quote.

“An observant parent’s evidence may be disproved but should never be ignored.”
—Lancet 1:688, 1951, Anonymous

Slow and gradual and Dr. B

We came home on Saturday and spent Monday night in the ER because of mixing up timing on a medication we give Mallorie. She was fine, and cleared to go home. Tuesday, we got to see Dr. B, who spent some time listening to the updates and getting to know the changes in Mallorie. She also was able to change out the medications a bit, so we have a little less to keep track of. Wednesday morning, back to Dr. B again. Mallorie had run a fever all night that didn't really even seem to respond to tylenol or motrin, and by morning she was struggling with breathing.

Dr. B asked us, "Did a breathing treatment help?" Uh, no, because we didn't even think. We just saw breathing problems and called, and they let us come in right away. So she had Mal get a couple of breathing treatments right there, which did help the breathing, and sent us for labwork and a chest x-ray. Later we got a call that the x-ray showed pneumonia and an area possibly not fully filling with air, so she is on an antibiotic and more breathing treatments and chest percussions to help loosen and move things out of the lungs. By Wednesday, she was noticeably better.

If you have a child, you probably are grateful for a good pediatrician or other healthcare professional whose opinions you trust. But having Mallorie has made me need another word that's bigger than grateful. Dr. B is beyond exceptional, and to make it even better, each of the pediatricians in the group she is part of is also exceptional, and we can (and have) trust all of them with our children's lives. One of the things that adds to the safety of their care of children is that all of them seem to be very good at taking histories. To understand what is currently going on with a child, and to come up with good plans, requires actually listening to what the family has to say, and what they "think" is going on. The family may or may not be correct, but I've heard Dr. B say many times in the past, something along the lines of "parents know best."

To fully appreciate this, you should understand that Dr. B has, well, sort of a strong personality and also strong opinions. She has been known to stand with her hands on her hips while loudly telling me that I'm practicing "voodoo" on my baby (by wanting to play with the immunization schedule.) But she somehow manages to combine her passion about doing the very best for "her kids" with prayer (to discern whether it might be appropriate to allow parent input to override her strong opinions) and with a sensitivity to the rights of parents to just have choices.

Like going along with my desire to keep experimenting with natural methods of keeping Mallorie's bowels functioning well .... provided that I have (and will actually use) a good back-up plan, so Mallorie doesn't suffer if my magnesium + vitamin C + cod liver oil formula doesn't work as well as her Lactulose.

When she asked how Mal's bowel movements were going on Monday, and said, "She's on only breastmilk right now, right?" When I said good, but explained that they smell like chicken poop, probably because of the dehydrated greens we started adding to the milk to get more nutrition to her (they contain grasses), she turned to Tracy, Mal's nurse/mommy, and said, "What are we going to do with her?" I know that SHE wouldn't prescribe dehydrated greens for anyone, but when she rolls her eyes and smiles, I know that along with the teasing there is a good dose of respect that she has for parents, that helps her remember that parents should be allowed to make choices, even silly ones, for their much-loved babies.

I marvel a lot at the wisdom God had in changing my work plans so that I was able to work around this girl enough to learn who she was, and to grow a friendship. I believe with all my heart that she is part of God's plan for Mallorie and for us. And she is one of the strong professional women I know whose lives and kids remind me that it's ok to work outside the home, if that's what God has called you to do, and that He will bless your children because of your obedience to that calling. She is that kind of mommy who proudly shows you the Spanish dancer dress she sewed for her daughter's school production, who goes camping out with her daughter's Daisy troop (even though she hates camping), and takes time off work to proudly bring her son to scholastic competitions, and beams when she jokes that he is the future Pope. And does weekend long girl-time expeditions to do scrapbooking. And she also happens to be a physician who is extremely safe and comfortable managing a little girl who right now is a tad bit complicated. I told her once, years ago, that from knowing her and watching her work at the hospital, I absolutely believed she was born to be a pediatrician. In case she ever had doubts. :) Which I bet she does not!

There is no way to honor her sufficiently for the gift she is in our lives, and goofy me, I brought my camera along in my purse both Tuesday AND Wednesday ... and forgot to even pull it out. I should have asked Tracy to remember, because she remembers everything!

Mallorie seems a tiny bit more alert at times without being agitated to go along with it. In fact, she sometimes seems to be able to tolerate a little bit more time between doses of the medication we give for her agitation. Not sure how much her frequent need for that med a few days ago had to do with her getting sick, but definitely she has been a little easier to predict in the past couple of days, and has some periods when she is a little more alert that are not also combined with tenseness and agitation.

Not much else to update. We are working on ways to simplify her routines to help lessen the chance of us making medication mistakes when our tiredness gets combined with Mallorie's health changes.

The older girls are gone for the weekend to a dance convention. This is something that John has always loved being a part of, but this year, as last year, they have to go with friends. But we are there with them in spirit, and hope someone sends us a picture or 2?? And we have a good sunny weekend to spend with the boys.

Sadness and gratitude.

I am so grateful to be home. I am so grateful to have Mallorie home WITH me, and to be able to bring her into our bed last night, to allow for frequent position adjustments to keep her airway open, and to better judge her level of comfort and know when she was cold. I love being able to decide (AS IF I KNOW) when to try moving the doses of the med that calms agitation closer together, and when to space them out more. Basically, I am grateful for the chance to try to get a handle on the timing of meds and feedings, instead of depending on others to manage all of that. Mallorie is on more meds than ever, and the continuous feedings are not so workable at home. And she has lost weight and seems so thin, so I started thinking while awake during the night last night, that I wanted to start adding some pureed meat to her feedings, and oil, and things like that.

But I'm also sad and frightened right now. During Mallorie's hospitalization, I was the one who kept telling the doctors and nurses that I saw daily small changes in her, and that I believed she would "come back," after awhile. I got that from one of the neurology residents, Dr. Tran, who would point out positive changes to me EVERY time he came in, and say, "See? This changed (she was not having the obvious seizures anymore, or she was showing an ability to breathe with less support, or not running a fever)... That's a good change, right?" And I would have to agree. Once he said, "Her improvement may not be happening in leaps and bounds, but she is still improving."

So I took that from him, and internalized it. I would say to myself and to anyone who asked how I thought she was doing, that she is improving, and that she will recover, but just not necessarily overnight. I would say it to John and to the kids, too. No one ever disagreed with me at the hospital; Hannah and John did try to express doubt, but what was the point? Only time will tell. And I would say that if Mallorie had a broken leg (well, and if she walked), no one would expect her to put weight on the leg for a long while or to walk on it. She would be expected to rest the leg so the bone could fully recover. So I wanted most of all for Mallorie to be allowed to rest, so her brain could have the best chance to heal. Rest and a peaceful environment were hard to come by in a 2-bed PICU room filled with 3 beds, and family members and 3 times the number of people coming in and out of the room on rounds and for medications and respiratory treatments. The best day was when Dr. N, a PICU attending, finally wrote an order to give Ativan at once, instead of just "give PRN" so that the next doctor could come around and undo the order. And she got almost immediate relief, as the Ativan went into her IV line. And then when Mal's new neurologist said she should continue with something like that at home, I felt the weight of having to fight for her being lifted from my shoulders.

But coming home has been hard. Not all our meds were available, although the prescriptions had been faxed to the pharmacy a day early, and we have had to scramble to find elsewhere those which weren't compounded meds, and to wait until this evening to get ones that were. And she still doesn't recognize us or respond to us. She doesn't smile. For so long I feel like I'm the one who has been telling everyone that she will be the same, eventually, but just needs more time, but tonight I am the one who is crying and don't want the other kids to know. I truly believe that it wouldn't be a surprise at all for God to accomplish this. But each day that goes by without this happening, and being home with her like this, makes it all harder to be so sure.

I might as well say it right here: I don't need anyone to tell me I just don't have enough faith. I came across some printouts of emails I had sent out 2 years ago, while Mallorie was in the same PICU, and I was so worn-down. Even then, as bad and hopeless as it might have looked at times, God answered prayers for Mallorie, and protected her from unnecessary procedures that were being suggested to her. But this sentence that I had written 2 years ago really jumped out at me this time:

And she smiled in her sleep a few times just before we were heading off to go to sleep ... the first smiles we'd seen since surgery! That is the part I am missing today. This sweet smile, that we have all over our cell phones, our computer desktops, and that all of us keep sneaking peaks at.




(These are unfortunately all from my phone, as our house is a wreck and I only have time to take a short break to do this post.)

There are some children whose lives I follow through blogs who have lost some of the abilities they once had through events that happened during hospital stays, through errors. Even if mistakes happen, if you believe that those caring for your child listened, and really acted as if they believed your child mattered, you might cope better than if you think someone just would not listen or care. I am grateful to not have those emotions to deal with, as I know Mallorie received good care. It might have felt like a fight sometimes, but people listened. But I do understand better, today, the grieving that comes from having to cope with such changes in a child. How I pray that these losses are reversed for Mallorie, and that she smiles AT ME soon. But I understand a little more.

On the Launch Pad, Again.

Yesterday, we thought we were going home, and packed. We still have the cart in the room! But Mallorie continued to have agitation and had spiked a fever in the night, and even Ativan hadn't had an effect more than 2 hours after it was given. There was a concern of new infection, and always in the back of the doctors' minds was the PIC (IV) line which had been removed in preparation for discharge. So the discharge was cancelled, to watch how her day progressed, and a new medication was tried, instead of Ativan, because 2 hours after the Ativan had been given through Mal's feeding tube, she was still very agitated and arching off the bed surface.

The periods of agitation are accompanied by higher blood pressures, heart rate, and temperatures, but they turn out to be very responsive to Clonazepam. This medication was much more effective in calming her, and seems to work more quickly, and lasts longer. That is a relief, because we know we will have a 2 hour drive home, minimum, and in the past, sometimes breathing difficulties have accompanied the agitation. I very much wanted to go home, but did not need any convincing about slowing things down when I thought about a 2 hour drive without oxygen in the car. She hasn't been needing oxygen ... I had woken up at about 5 or 6 a.m. yesterday morning, thinking about how she was still on oxygen and we didn't have any with us for the trip home, that when it came time to go, she might have to be trialed on room air, first. So we turned the oxygen mist off and learned she could go all day with no issues maintaining good oxygen saturations on room air.

So yesterday, after receiving Clonazepam, there was no more fever. After just over 8 hours, Mallorie woke up (2:30 am) and was becoming periodically restless, and over the next few hours, she ran just a low-grade fever, her blood pressures went up somewhat (she is already on 2 blood pressure meds) ... but then she calmed down again, even though she didn't go to sleep, and the "fever" went away and the blood pressure came down. That was without any additional medication. At 8 in the morning, the agitation increased, and she was given another dose ... and she has been snoozing peacefully since.

Most of the people here do not think this is seizure activity that she is still having, but more likely a sign of her brain "waking up." For sure, her body's response to this agitation ... or else the agitation itself ... is much less dramatic than it had been in the PICU. Maybe this is because they do not let her go hours in an agitated state, while treating just the blood pressures and doing bloodwork when she has fever. Instead, they treat her obvious agitation more quickly, and so maybe it just doesn't get as bad? Or maybe it is just that she is getting better, day by day, and so her periods of agitation are simply less severe. Either way, this sweet girl is resting (she had been given the new med 2 hours before this picture), and we are officially going home.

WE LOVE THIS NEUROLOGIST (Dr. Rivera) who will continue to see Mallorie after discharge. He very clearly loves children, and I do not feel I have to be careful of the way I am asking questions (like starting always with, "I am not saying that I think this could be seizures, but ..."). Instead, he is patient with what probably sounds like I am asking the same questions over and over, but as different things occur to me, I need another explanation of what HE thinks is going on. He listens very patiently, and though I know he is a very busy man, John and I said he has a way that makes you feel that Mallorie is the only one he has come to see on the floor. He was clearly chosen for us. I know at this point, I cannot have another doctor that it feels I need to wrestle with. In fact, he offered this morning to email Mal's Physical Medicine and Rehab doctor to ask her if a Hensinger collar might be helpful for Mallorie, since there are some concerns about the neck region of her spine, and Mallorie cannot support her head on her own. I get the feeling he pretty much knows everyone in this big place, and has a good relationship with them all.

So we're packing, because yesterday all the discharge prescriptions had been faxed to our home pharmacy, Dr. B had been called by the resident, and the milk had been moved from the milk bank freezer to this floor's freezer. Andn we will bring our sweet baby home to the arms and kisses of her brothers and sisters. And Tracy.

I am praying today for Witt, who is still in the PICU here and is still in need of healing. And for Rolando, who has been in the PICU for a month, running fevers continuously despite antibiotics. Mom told me yesterday that they believe the source of infection was his central IV line. I am praying that with that IV now out, his body can respond to the medications, and that he will recover fully and return home with his family. He is an 18 year old miracle, a former premie, and apparently a source of joy to those who know him. I only wish there was always a way to allow others to see who our children "are" when they are not sick. So many times we have been asked if Mallorie is back to her "baseline." Thanks to Mal's speech therapist, we have a blanket displaying Mallorie sticking out her tongue at John, or grinning ear to ear, and fold it at the bottom of her bed so anyone who comes in can see one of the pictures. (To John's delight, it also has pictures of the other kids, so anyone who comes in the room when he is here gets to see the pictures of all his brood.) :) This hospitalization was not planned at all, but I know some people bring photos of their child when they have hospitalizations. I think expecially for children with special needs, this is a blessing, if doctors, nurses, and respiratory therapists can see who your child is when he or she is not sedated or very sick, and the personality can show through. I can't count the times when residents have told us how good it was to see a visual, so they know who they are caring for. She is a much-loved part of a family, and a child full of joy. They might not get to know her when she has fully recovered, but they have gotten a glimpse.


**I'll post the picture later ... because WE ARE PACKING UP!!**

On the Launch Pad??

If we were in Beaumont, Dr. B would be saying right now that we are on the launch pad.

Mallorie has a new neurologist who seems great, and is willing to work on squeezing her in to see him sometime in the next month. No small feat here, because it's VERY hard to get a neurologist appointment. I hear 9 months to a year is typical. He's very thorough, and speaks to Mallorie in the sweetest baby talk. He's a real "kid" doctor. And very good at explaining things.

He also wants her to become established as a patient with a pulmonary doctor (for the lungs), just in case that is ever needed.

In the PICU, there were a lot of changes made in the electrolyte supplements given to Mallorie, and a new blood pressure medication was added, and these changes will be continue at home, so we have been in touch with the renal doctor's nurse, and Dr. M will follow her labs and we'll visit her if needed. I expect she will try weaning Mallorie off the lasix very soon.

And we'll see Dr. B on Monday, I think, for a post-hospital visit.

The only hitch right now is that Mallorie spiked a temp last night. Apparently, on this floor, they subtract 2 degrees from the reading if the temp is done rectally?? I've never heard of anything like that, but that's what the nurse told me today. She also ran another fever (101 under her arm). I can't remember what they said they do to armpit temperatures. She had some bloodwork done to see if it looks like any infection might be going on, and I guess depending on those results, they will decide if she needs to stay another day or not..

Moving up in the world, real clothes, a visitor, and dreams of home.

Today we moved out of the PICU!!!!!!!!!

The day started with Mallorie having a short period of agitation which resolved without any medication. And ended on the 10th floor (Neurology floor). All this time I thought we were going to the PCU (intermediate care/monitoring floor), but this is a nice surprise. A great view, a spacious room that feels like we're in a hotel, private bathroom with shower, and a bed (couch) only for me (& Hannah). And lots of privacy. It feels so amazing, and even better than the PCU where we've been before, because with only minimal monitoring (her pulse ox), no one has issue with us closing the blinds to the hallway.

Then we got a visit from Kenzie, and in all that time, I forgot about getting a picture! Here's some picture evidence that she was here, and Hannah and I are enjoying the steaming cups of tea from what she brought. I can't believe she remembered about my love for Twining's orange pekoe tea!





We don't know how long we will be here. Mallorie's not all the way back to normal, and of course, she will continue for awhile on some seizure medication, since she didn't do well with weaning her off seizure medications before. She's still not really alert, although each day shows improvement, but I just asked the neurologist who came into the room about Keppra. I remember a mom telling me when her son was able to go down to just one seizure medication, the neurologist asked her which would be her first choice, and it was Keppra. So I assumed it was a less sedating choice, since going to just that one medication meant her son "woke up." The neurologist told me that one of Keppra's side effects is sedation. So how do we know when she is waking up more and improving, if she's sedated by the med? A shrug.

One frustrating thing about neurology, according to the night nurse, is that - unlike with cardiology - there are a lot of vague unknowns. Unanswered or incompletely answered questions. There is a lot of drawing conclusions from things that can't always be measured or that don't always show up on EEGs. I see what she means. I hope to remember tomorrow, when the attending and fellow come through on rounds, to turn the tables a little and ask them to give me the summary of Mallorie's illness, just to see what the consensus was. Tonight's doctor did mention that she understood that Mallorie hadn't had a seizure for 3 days ... and that means they are counting what happened this weekend, when she required Ativan to calm her so her blood pressures came down, as seizure activity. I think. I'll take the gifts wherever they come from, because somehow I thought I'd still have to play the game of prefacing any request for treatment of any serious agitation with, "I'm not saying this is a seizure or anything, but ...."

On the other hand, if things continue as smoothly as today went, and Keppra is effective for Mallorie, then maybe we don't even have to be concerned about any of that. :)

The past few days

Monday

I left the camera in Mallorie's room, and am currently in the waiting room, but I should be posting some pictures. Maybe tomorrow, when all my stuff AND my child are in the same room at the same time.

Today Mallorie began the day with some of the stiffness/arching that she was doing before, and keeping her head turned to one side. Whenever I ask about it, the doctors say they don't think it's seizures. But no one has done an EEG when it's been going on, and even if it isn't seizures, I absolutely feel it's something to do with what's going on in her brain. She looks very uncomfortable while this is going on, her heartrate is high, and her blood pressure is high (180/100+) even though she is already on 2 medications for her blood pressure. Today, I asked again about possibly treating the agitation with some Ativan before treating just the blood pressure. I started with saying, "I know no one thinks this is seizures, and I'm not saying I think it is a seizure, but ...." and the doctor said, "It could be seizures. And if it is, it is very important to treat it."

Wow. Some of the other doctors have said that if they give her Ativan to calm her and stop whatever this is, it could make her stop breathing. Personally, when she is doing all of this, and it's making it hard enough for her to breathe that they are talking about putting a tube back in, as has happened when she did this before, I'd wonder what the risk is. If she stops breathing ... they were already planning to put a tube in, right? But only 2 doctors so far have agreed that Ativan should NOT be a problem for her breathing, and one of them (a neurology resident) also said it should not cause problems if they had another EEG done right afterward, because Ativan would not mask the seizures the way adding more seizure medication would. But even if another doctor agrees it could be a good treatment plan for her, that does NOT mean the doctor who is in charge at the time when this stuff is going on will agree with the plan.

But today, Dr. N looked at her and at her vital signs, and said to give her Ativan, and not another blood pressure medication. He told me that her elevated pulse and blood pressure could absolutely be from seizure activity. And within minutes, she calmed down, her breathing became easy and quiet, and she slept peacefully all day. When it came time for the MRI she was scheduled for at 4 pm, she was still so relaxed that they did NOT have to put a tube in at all (much better for her), and just gave a little bit of medication in her IV. She continued to breathe with no problems afterward, and I just gave her a bath, and I know she will have a good night. She is requiring some oxygen still, but it's being given "blow-by" as we do at home when she is sick, ... and with extra moisture to keep her airway from drying out. No mask or anything.

And the caffeine level that was repeated before any changes had been made in her doses showed a level of "5." The first one, which I really believed had been lost in Utah, somehow, because it was well over a week before someone could find it to give a verbal report .. and then no one could find it to send a fax the next day .... had been 24. I never believed that level, but since it was over the desired range of 10-20, I did feel much better getting confirmation. The really neat side effect of having that first report was that they lowered her dosage a little. This is as safe of a place as any to attempt lowering her dose, because I sure wasn't interested in trying it. Last time it got really low (to a "2") last winter, she was having really frequent episodes of apnea. But now, on a lower dose (I think 25% lower), she still does not have ANY apnea.

So 2 really good things learned today. That Ativan can help if she continues to have episodes of the breathing struggles associated with signs of agitation (high pulse and blood pressure). And that she can tolerate a slightly lower caffeine dose without apnea.

And Mallorie continues to breathe without any artificial support. :)

I have an appointment for myself tomorrow morning, just down the street, so Hannah will come to stay with Mallorie. I've asked them to hold off sending her to the other unit till I get back, but I fully expect Mal to be out of the PICU tomorrow. Yay! Not meaning it's not a wonderful place. Mallorie has received good care, and I've grown while here. But yay!