Having a child with seizures means out of the blue 911 calls, ambulance trips, and a one time airplane ride to the closest Emergency Room.
Having frequent trips to the ER, starts off with us being an emotional mess, then we become an anxiety apprentice, then we move up to a composed looking adrenalin running junkie. Now, with all the ER madness, there is of course room for the inappropriate awkward funnies that we realize only in hindsight when seizure shenanigans have settled down.
Here are some of our ER bloopers....
The This is Not Social Hour
While the ER medical team was in the middle of trying to control Isabella's first grand mal seizure, I realized that I knew one of the nurses taking care of her, as she was the parent of one of my former students. In the middle of the serious stressnesses going on I blurted out, "Hey, I know you. You're one of my student's parents. How have you been and how is your son?"
What? You want to catch up right now, when she's busy intubating your daughter?
The Famous Dr Potter
On one of our more settled moments in the ER (if there is such a thing), the ER doctor asked us about issues that our daughter has. When we got to the part wherein we mentioned she has renal issues, the doctor and I then had this conversation...
ER Doc: So who is your nephrologist over at Packard?
Me: Dr. Potter
ER Doc: Oh you are so lucky. Your doctor is world famous.
Me enthusiastically: Oh yeah really? Just like Harry Potter?
Connected? Duh, I don't think so? Makes for some really intelligent conversation.
The Unnecessary Trivia Time
When Isay's seizures were finally controlled, the ER doc gave us a run down of medicines that they gave Isabella.
ER Doc: We gave her doses of Verced, Ativan, and Phenobarbital. But even while she looked like she was still, she was still seizing in her brain. So we need to make her go into a really deep sleep to stop the seizures, so we gave her some Propofol.
Husband in a very enthusiastic manner: Oh! That's the medicine that killed Michael Jackson!
What? Is it trivia time? Was that the daily double?
The Hugger
Isay had a seizure when we were vacationing in Oregon so we had to call 911. We were taken to a hospital in Florence, Oregon. Being a small town, the hospital was not well equipped to handle cases such as my daughter so they called Doernbecher hospital up in Portland and they flew in to help. The Portland OHSU team has taken over the care of Isabella and was able to finally stop the seizure activity. As we were getting to ready to leave (which was an ambulance trip + a small plane ride + another ambulance trip to get to OHSU, Portland), the ER nurse that stayed with Isabella the whole time while she was seizing (4 hours total), touched my shoulder, and I immediately leaned in to give the nurse a hug. Somewhere there I also managed to do a hug with a head leaned on the shoulder, only to realize that what the nurse was actually doing was reaching behind me to reach for the chart in the cramped ER space where I was standing at.
Now, this was a man nurse... an old man nurse. I thought he was being kind that I even leaned my head on his shoulder. Now, I don't recall specifically if I even wrapped my arms around his waist, but there is a good chance that I did. No wonder he stiffened up!
Showing posts with label seizures. Show all posts
Showing posts with label seizures. Show all posts
Friday, July 29, 2011
Monday, May 23, 2011
Mayday on One May Day
It was one of those typical days. We have our routine going on and everything was just how it should be. It was close to 8pm, around after dinner, and we were with extended family at an aunt’s house. I was helping to clean up after dinner while the husband was getting ready to pack up and leave. My son was enjoying himself as he played and laughed with his cousins. I was getting ready to wash some dishes. I then heard my husband, calling for me from the living room, asking for some assistance as Isabella started throwing up. I took some kitchen towels with me on my way.
When I got to where they were at, I saw that look on Isabella’s eyes. That look that I saw 6 months ago. That “focal seizing look”. I then told my husband that I think Isabella’s having a seizure. He didn’t think she was and even added that Isabella is just sleepy (which of course a possibility since it was already close to 8pm… her bedtime). I insisted that she was seizing and went to pretend to put my fingers to touch her eye just to demonstrate, and make a point, that Isabella was just staring emptily into space. She did not blink. My husband was trying to talk to her… distract her, to demonstrate his point that she was not seizing. I still insisted and told him that this “look” was the same look I saw that first time that she had a seizure. I started looking at the clock while he took Isabella to the bathroom with her Keppra medication as it was almost time for her to have it. He gave it through her g-tube.
I started collecting our stuff…. The whole family oblivious of what was already going on. Then followed my husband to the bathroom to check how things are going. She was throwing up her meds, looked weaker, tiny twitching started to happen. I told him that it will be 10 minutes in 2 minutes. My husband finally acknowledged that it was indeed a seizure and asked for me to come get the Diastat.
It took awhile for us to figure out how to open the medication. We had to re-read the instructions. We kinda both forgot how we were told to administer it. When we finally able to give it to her, I asked my husband what happens next. He said that it is supposed to take effect immediately as it is administered rectally. We waited. I was still watching the clock.
I went to my aunt and told her that Isabella is having a seizure and if it does not stop we would be calling 911. My husband called our son to let him know that his sister is seizing. We wanted him to see what her seizure looks like. He figured that had this happened on our drive home we would not even know that she was already seizing in her car seat and since her brother sits with her at the back of the car, he can help us see it.
My son already knew what this meant…. He was going to stay behind while Mommy and Daddy leave to go to the hospital. Thank God we were at a relative’s house.
10 minutes passed (which actually felt like forever since the seizure started), and the seizing has not ceased. I called 911. I stayed on the phone and my husband was talking to my aunt figuring out logistics for Eloi and driving, and pick up, etc. We were quick… we were thinking straight and we were on top of it. I stayed on the phone with the 911 dispatcher and waited for the paramedics to arrive at the front of the house. When I heard the sirens coming closer I called for my husband. When the paramedics arrived, instead of having them come to Isabella, we took her to them. It was one less trauma for all my nephews and nieces and the rest of the family to see. My husband and I were calm and collected…. Unusually quiet, but calm and collected nonetheless.
I rode the ambulance to the nearest hospital. My husband followed. When we got there I gave them the rundown of things that she has. I could just tell them the name of her syndrome as that covers all of it, but since it is rare, and they can’t even spell it, I had to name them all her complications one by one. I have to stress over and over that she has kidney issues just to make sure that they will not give her anything that can damage her kidneys. We would not want to add one more thing to the already long list of things. I sat and watched them work on her.
The ER team poked and prodded and administered does of different kinds of medicines. Then they decided to intubate… I felt it was not necessary but let it go, as I know that they are doing their best and following procedure and have every good intention to help my daughter get through the seizure. I can’t really do much, but to wait and watch and pray.
We were asked questions and we filled out paper work… an hour after we got there, the seizing finally stopped and Isabella was heavily sedated on the ER bed. That’s when we started talking to them about taking Isabella to Stanford as that was what was done the first time she had a seizure… and also because they know her there. They called Stanford and their team will be coming to get her. They got there passed midnight and we were settled in at Stanford around 1am.
The first thing they did was extubate her, and while we were there Isabella was trying to wake up. She was groggy and crying, but awake. She needed to sleep though but she kept trying to be awake. Eventually, after trying to fight the meds, the sleepy meds took over and she was asleep.
My husband and I were not worried nor were we crying. We were just there. A little stoic maybe… but we were there. We started talking about how to break the news to our son that we would have to postpone our trip to the Aquarium the next day (one of the three trips that we already promised me but didn’t get to go because something comes up with Isabella that prevents us from going), planning how to get our son to school on Monday, how to get a substitute for work, how one of us would have to go home and one stay at the hospital. Then we remembered the dog we left at home in her crate (poor doggy… she would have to go make sacrifices too).
The next day, the first thing that Isabella did was try to sit up. She was still too weak and groggy from the meds that she can’t. She was grumpy and crying. After rounds we were told that they need to adjust the meds. They suspect that the seizure happened because she was already bigger and the dose was not enough. A little later after a consult with our neuro, we were told that she was going to be discharged.
When we got home and got settled in, and perhaps after all the adrenalin has left my system, I finally found the time to feel and cry over what just happened. I was worried about how the seizure is going to affect her development. How far back will Isabella lose the skills that she (and everybody working with her) worked so hard to develop?
When I awoke the following day, I saw Isabella sitting like she used to, rattling a toy and smiling as if nothing happened. My girl is so resilient…. Mama’s got to learn how to become more like her.
When I got to where they were at, I saw that look on Isabella’s eyes. That look that I saw 6 months ago. That “focal seizing look”. I then told my husband that I think Isabella’s having a seizure. He didn’t think she was and even added that Isabella is just sleepy (which of course a possibility since it was already close to 8pm… her bedtime). I insisted that she was seizing and went to pretend to put my fingers to touch her eye just to demonstrate, and make a point, that Isabella was just staring emptily into space. She did not blink. My husband was trying to talk to her… distract her, to demonstrate his point that she was not seizing. I still insisted and told him that this “look” was the same look I saw that first time that she had a seizure. I started looking at the clock while he took Isabella to the bathroom with her Keppra medication as it was almost time for her to have it. He gave it through her g-tube.
I started collecting our stuff…. The whole family oblivious of what was already going on. Then followed my husband to the bathroom to check how things are going. She was throwing up her meds, looked weaker, tiny twitching started to happen. I told him that it will be 10 minutes in 2 minutes. My husband finally acknowledged that it was indeed a seizure and asked for me to come get the Diastat.
It took awhile for us to figure out how to open the medication. We had to re-read the instructions. We kinda both forgot how we were told to administer it. When we finally able to give it to her, I asked my husband what happens next. He said that it is supposed to take effect immediately as it is administered rectally. We waited. I was still watching the clock.
I went to my aunt and told her that Isabella is having a seizure and if it does not stop we would be calling 911. My husband called our son to let him know that his sister is seizing. We wanted him to see what her seizure looks like. He figured that had this happened on our drive home we would not even know that she was already seizing in her car seat and since her brother sits with her at the back of the car, he can help us see it.
My son already knew what this meant…. He was going to stay behind while Mommy and Daddy leave to go to the hospital. Thank God we were at a relative’s house.
10 minutes passed (which actually felt like forever since the seizure started), and the seizing has not ceased. I called 911. I stayed on the phone and my husband was talking to my aunt figuring out logistics for Eloi and driving, and pick up, etc. We were quick… we were thinking straight and we were on top of it. I stayed on the phone with the 911 dispatcher and waited for the paramedics to arrive at the front of the house. When I heard the sirens coming closer I called for my husband. When the paramedics arrived, instead of having them come to Isabella, we took her to them. It was one less trauma for all my nephews and nieces and the rest of the family to see. My husband and I were calm and collected…. Unusually quiet, but calm and collected nonetheless.
I rode the ambulance to the nearest hospital. My husband followed. When we got there I gave them the rundown of things that she has. I could just tell them the name of her syndrome as that covers all of it, but since it is rare, and they can’t even spell it, I had to name them all her complications one by one. I have to stress over and over that she has kidney issues just to make sure that they will not give her anything that can damage her kidneys. We would not want to add one more thing to the already long list of things. I sat and watched them work on her.
The ER team poked and prodded and administered does of different kinds of medicines. Then they decided to intubate… I felt it was not necessary but let it go, as I know that they are doing their best and following procedure and have every good intention to help my daughter get through the seizure. I can’t really do much, but to wait and watch and pray.
We were asked questions and we filled out paper work… an hour after we got there, the seizing finally stopped and Isabella was heavily sedated on the ER bed. That’s when we started talking to them about taking Isabella to Stanford as that was what was done the first time she had a seizure… and also because they know her there. They called Stanford and their team will be coming to get her. They got there passed midnight and we were settled in at Stanford around 1am.
The first thing they did was extubate her, and while we were there Isabella was trying to wake up. She was groggy and crying, but awake. She needed to sleep though but she kept trying to be awake. Eventually, after trying to fight the meds, the sleepy meds took over and she was asleep.
My husband and I were not worried nor were we crying. We were just there. A little stoic maybe… but we were there. We started talking about how to break the news to our son that we would have to postpone our trip to the Aquarium the next day (one of the three trips that we already promised me but didn’t get to go because something comes up with Isabella that prevents us from going), planning how to get our son to school on Monday, how to get a substitute for work, how one of us would have to go home and one stay at the hospital. Then we remembered the dog we left at home in her crate (poor doggy… she would have to go make sacrifices too).
The next day, the first thing that Isabella did was try to sit up. She was still too weak and groggy from the meds that she can’t. She was grumpy and crying. After rounds we were told that they need to adjust the meds. They suspect that the seizure happened because she was already bigger and the dose was not enough. A little later after a consult with our neuro, we were told that she was going to be discharged.
When we got home and got settled in, and perhaps after all the adrenalin has left my system, I finally found the time to feel and cry over what just happened. I was worried about how the seizure is going to affect her development. How far back will Isabella lose the skills that she (and everybody working with her) worked so hard to develop?
When I awoke the following day, I saw Isabella sitting like she used to, rattling a toy and smiling as if nothing happened. My girl is so resilient…. Mama’s got to learn how to become more like her.
Ready for a garden tea party!
(This picture was taken that afternoon before Isabella's seizure.)
Monday, November 22, 2010
The Cleft Repair Surgery Story and Other Things
Isabella was an ounce shy of 12 pounds on the day of her surgery and measures 29 inches.
Day 1:
600 am we arrived at the hospital
730 we were let in and prepared for surgery
800am doctors gave us the ok to give her daily dose of Keppra
915 we kissed her goodbye and she went with the anesthesiologist to the OR
130 She was wheeled to her room.
While the doctors reassured us that everything went well and that she was perfect and that there was no drama in the OR, seeing her with a swollen bloody mouth and with her face quite bloated from the general anesthesia was difficult for me, the mom. But I had no other option but to trust the doctors that everything went well.
The doctors told us to make sure that she does not put her hands in her mouth, which is really going to make her angry because “hands-in-mouth” is a recent soothing strategy she has recently self-discovered. Issues with acid reflux also raises concern so medication to help with throw-ups (at least for the next 2 weeks)are necessary, with the side effects being that she will be drowsy and sleeping a lot. Doctor also advised us to stick with tube feeding and skip the semi solids for the next 10 days. All these sounds manageable except that my husband and I both feel that since she is uncomfortable she might not be sleeping well and she’d be fussy and stressed and tired which might trigger a seizure.
Instead of giving her a regular room, the medical team has decided to place her in the pediatric ICU for one night just to be on the safe side. The doctors and nurses said that we do not need to worry about having her in the PICU since she’d only be in for a night and and out the next day. We were going to tell the doctors to give us an extra night of stay, even if she was placed in a regular room, as long as we get to stay in the hospital for one more day. The doctors kept trying to convince us that this won’t be necessary. So, though unsure, we tried to be appeased with what the doctors were telling us.
She was not able to eat anything the first day. She had an IV, and did a small bolus of pedialyte via g tube.
Day 2:
1200 am Isabella had a slight fever.
1230 am she started having a cluster of epileptic seizures
245am seizures were finally controlled
The PICU team controlled the seizure by giving her Ativan and eventually some Diazepam. This is on top of her daily dose of Keppra that, obviously was not enough to control her seizures, which are most likely the result of all the stress that came with the surgery. In the midst of her seizures, she stopped breathing, and intubation was necessary.
Isabella was heavily sedated and given extra supervision. She had 2 nurses attending to her at bedside. While it is good that she gets extra care, it is also worrisome for us because it signals the delicate nature of our daughter’s condition. She was hooked on a breathing machine as she was not breathing on her own.
11am according to the PICU team they will start weaning her off the breathing machine’s support. The settings were changed to low, but machine kicks in to provide the oxygen her body needs. Her breathing was erratic.
1pm while still heavily sedated still, she coughed out her breathing tube and decided unconsciously to extubate her self. Doctors and nurses rushed to her bedside. However, for reasons unexplainable, including how she managed to cough out her tube when it is far down her trachea, she started breathing ON HER OWN. Re-intubation was not necessary
2pm she had her intravenous dose of Kepra on top of the other medicines such as antibiotics and those that control pain, calm her and sedate her. Neuro team decided to double the dose of the anti seizure meds.
Throughout the rest of the afternoon Isabella will have brief moments where she would open her eyes and move. She did not smile nor looked at us, but I know she knows we are just there. Still no real food for her, and all she got for nourishment was dextrose.A check of her blood oxygen level was done and it yielded posiive results.
Day 3:
130 am Isabella had another seizure that lasted 5 minutes and was controlled by Ativan. This time we did not receive a phone call. We were notified when we got to the hospital at…
630am Isabella looks much better. The swelling of her lips have gone down, but the bruises on the sides of her mouth was still visible. We understand that bruises take awhile before they become less visible. She is also not heavily sedated anymore. She didn’t cry, but raised her arms when she woke up so she can get held. She started looking around the room and would sometimes like to be propped sitting so she can take a better look around. She also didn’t need 2 nurses to take care of her.
11am We met the doctors at rounds and we were told that we would be staying another night in the PICU to monitor seizure activity for the next 24 hour period since her last seizure. They still need to discuss with the team if the antiseizure meds dose need to be readjusted. CFT docs suggested we do not feed her by mouth for risk of aspiration, at least for the next 10 days. There is a chance we will be transferred to a regular room tomorrow and stay until Monday, if seizure activity is controlled.
Throughout the day we can see the Isabella is slowly but steadily getting back to her regular self. She has not smiled but would start looking at us and wanting to be held, touched or talked to. She also started making the Mmmmm sounds she usually does and would stare at her hand and stick out her three fingers. Although docs said she cannot put anything in her mouth, we let her lick the back of her hand (technically it was not “in” her mouth anyways… bad mommy!).
There was also talk about doing another MRI, and GI doctor recommended that we giver her acid reflux meds to help take care of the surgery site if she throws up. She also started her round the clock feeds, that were adjusted to 25 mls per hour to give her a gradual start.
We hoped she does well over night. Things have started looking up.
Day 4:
We woke up early then went to Sunday mass then right after, we went straight to the hospital. The very first question we asked the PICU nurse was if she had a seizure that night… she didn’t.
We started asking questions regarding discharge. They said that she might still need to stay a night but will most likely get transferred to a regular floor room if a room becomes available. Otherwise, if all goes well, she stays one more night here in the PICU then we can go home on Monday.
From the Neuro standpoint, we were told that her Kepra dose is now 2mls to be given twice a day. That seemed to have controlled the seizures, even if they have reason to believe that she had a high likelihood to have had a seizure because of the surgery. We had a discussion with the doctors regarding her blinking/jerking movements. We discussed the difference of neurological tics and myoclonic jerks. They did add, and stressed also, that as long as it does not hinder development, cause her to regress or to stop progressing at the rate she is already going, it should not be a cause of concern. Most likely her blinking/jerking is a myoclonic jerk and tics would come out, if she is going to have any, around the age of 1 and is most likely triggered by anxiety such as that of feeling awkward in a social situation, among other things that may cause a person to feel anxious.
We were also able to clarify with the neuro docs regarding mentioning the possible need for another MRI, they said that they have discussed it as a team and find no need for it right now, but they may need to request for an EEG. We told them that she has one scheduled in January. But they are going to put an order in to see if it can be done tomorrow morning since we will be here anyways. When they did the EEG on Day2 of our hospital stay, it showed irregular spikes in her brain activity which is most likely a result of her being administered ativan, and since she has not been sedated for more than 24 hours and has had no seizure activity, an EEG will most likely record better brain activity.
The CFT Doctor said we can try giving her semi solid foods via mouth to see how she does. They said to definitely not feed her via spoon… at least not yet. Her first semisolid food since Wednesday is a very yummy 25 ml serving of strained cream soup. She did not like it. She didn’t finish it. She only took about 5mls. Maybe because it is more like gravy and it would be better is it came with chicken. So I gave her some vanilla pudding instead and she welcomed that with an open mouth and an arm swinging, leg kicking dance. However, 20mls later, she threw up… all of the 25 mls and then some.
She did get nourishment via the kangaroo pump and she showed us that she did by passing out her very fist poo. Yey!
She has not been crying like how she used to. It is not so much how her cry sounds, but it seems that she is trying to suppress sounds coming from out of her mouth. She has been awake a lot today, would do occasional “Hmmms”, but she does not sound as frequently as she used to. Perhaps she is still trying to figure out how to move things around in her mouth.
She smiled twice to nanay today and she also gave a little one sided lip smile to her nurse. She also took a bath. Her BNrother and some froends also paid her a visit. Eloi got to hold her and play with her for a little bit.
I know that my son is trying to act all grown up and okay about this whole mommy-daddy-sister-all-in-the-hospital deal, and though a big part me wants to be with me want to be with him at home and leave Isabella with the care of the nurses, or have him be absent from school and bring him with us here, I want him to still have that sense of "normalcy" in his life. I also do not want him to know or learn about "worry", at least not yet... as long as I can keep him from that cause there'd be plenty of time for worry when he grows up. He told us, right before he left the hospital, that he is sure that we aqre going home tomorrow. When we asked him how he knows this, he says it's because it's been 5 days since we've been here. I guess he had enough of all this "separation".
When we kissed her goodbye for that day, we sent a short little quiet prayer that all goes well throughout the night and that tomorrow we will all be going home.
Day 5
We were greeted at the hospital with a talk about possible discharge. The concerns that might prevent her from being discharged is that of her feeding. Their hope is that throughout the day, she will be able to taken in the volume of semi solids and milk the way she regularly does it at home. Although we know that there are concerns regarding throw up we told them that “throw-ups” are a regular part of our life. So, throw ups, though it may not be the general “norm”, it is OUR NORM.
The day went by and the doctors gave us their updates. CFT had nothing more for her except that we need to see them back for a post-op appointment 2 weeks post surgery which is technically only 11 days from today. Neuro says there is no need for an EEG and that we stick to our already set EEG and neuro appointment 2 months from now. Renal also sends their ok and her creatinin and potassium levels are all good. GI also says everything is going well, except for the not feeding by mouth, which for them is not a red flag concern at this point, afterall she just had surgery in the mouth.
The PICU team asked if we feel comfortable about bringing her home despite the semi-solid feeding issue… in unison, my husband and I replied with a yes. They did add that if we do not feel okay with it, we can stay one more night, and for a brief second we did hesitate, but we responded with a resounding “Nahhhh.”
We picked up her set of meds, signed some docs, the beeping machines were wheeled away, the beeping machine attachments were taken out, the IVs were also taken out, and after a couple of pee pee diapers, a poopy diaper, a cat-nap, a bolus feed, 3 hesitant smiles, and a dose of pain meds later… we were sent home.
…and that my friends, is our 5 day surgery story and other things.
She’s in good health and all ready to brave the cleft-combat. The procedures scheduled that day included checking ear tubes for both ears and possible ear tube replacement, possible draining of ear fluid and cleaning out of ear wax, this will be followed by repair. The doctors said that the whole procedure should only last about 2 hours, however, we had to wait for 4 hours before they let us see her again.
Day 1:
600 am we arrived at the hospital
730 we were let in and prepared for surgery
800am doctors gave us the ok to give her daily dose of Keppra
915 we kissed her goodbye and she went with the anesthesiologist to the OR
130 She was wheeled to her room.
The doctors told us to make sure that she does not put her hands in her mouth, which is really going to make her angry because “hands-in-mouth” is a recent soothing strategy she has recently self-discovered. Issues with acid reflux also raises concern so medication to help with throw-ups (at least for the next 2 weeks)are necessary, with the side effects being that she will be drowsy and sleeping a lot. Doctor also advised us to stick with tube feeding and skip the semi solids for the next 10 days. All these sounds manageable except that my husband and I both feel that since she is uncomfortable she might not be sleeping well and she’d be fussy and stressed and tired which might trigger a seizure.
Instead of giving her a regular room, the medical team has decided to place her in the pediatric ICU for one night just to be on the safe side. The doctors and nurses said that we do not need to worry about having her in the PICU since she’d only be in for a night and and out the next day. We were going to tell the doctors to give us an extra night of stay, even if she was placed in a regular room, as long as we get to stay in the hospital for one more day. The doctors kept trying to convince us that this won’t be necessary. So, though unsure, we tried to be appeased with what the doctors were telling us.
She was not able to eat anything the first day. She had an IV, and did a small bolus of pedialyte via g tube.
8pm she had her daily dose of Kepra on top of the pain meds and antibiotics
Day 2:
1200 am Isabella had a slight fever.
1230 am she started having a cluster of epileptic seizures
245am seizures were finally controlled
The PICU team controlled the seizure by giving her Ativan and eventually some Diazepam. This is on top of her daily dose of Keppra that, obviously was not enough to control her seizures, which are most likely the result of all the stress that came with the surgery. In the midst of her seizures, she stopped breathing, and intubation was necessary.
Isabella was heavily sedated and given extra supervision. She had 2 nurses attending to her at bedside. While it is good that she gets extra care, it is also worrisome for us because it signals the delicate nature of our daughter’s condition. She was hooked on a breathing machine as she was not breathing on her own.
11am according to the PICU team they will start weaning her off the breathing machine’s support. The settings were changed to low, but machine kicks in to provide the oxygen her body needs. Her breathing was erratic.
1pm while still heavily sedated still, she coughed out her breathing tube and decided unconsciously to extubate her self. Doctors and nurses rushed to her bedside. However, for reasons unexplainable, including how she managed to cough out her tube when it is far down her trachea, she started breathing ON HER OWN. Re-intubation was not necessary
2pm she had her intravenous dose of Kepra on top of the other medicines such as antibiotics and those that control pain, calm her and sedate her. Neuro team decided to double the dose of the anti seizure meds.
Throughout the rest of the afternoon Isabella will have brief moments where she would open her eyes and move. She did not smile nor looked at us, but I know she knows we are just there. Still no real food for her, and all she got for nourishment was dextrose.A check of her blood oxygen level was done and it yielded posiive results.
Day 3:
130 am Isabella had another seizure that lasted 5 minutes and was controlled by Ativan. This time we did not receive a phone call. We were notified when we got to the hospital at…
630am Isabella looks much better. The swelling of her lips have gone down, but the bruises on the sides of her mouth was still visible. We understand that bruises take awhile before they become less visible. She is also not heavily sedated anymore. She didn’t cry, but raised her arms when she woke up so she can get held. She started looking around the room and would sometimes like to be propped sitting so she can take a better look around. She also didn’t need 2 nurses to take care of her.
11am We met the doctors at rounds and we were told that we would be staying another night in the PICU to monitor seizure activity for the next 24 hour period since her last seizure. They still need to discuss with the team if the antiseizure meds dose need to be readjusted. CFT docs suggested we do not feed her by mouth for risk of aspiration, at least for the next 10 days. There is a chance we will be transferred to a regular room tomorrow and stay until Monday, if seizure activity is controlled.
Throughout the day we can see the Isabella is slowly but steadily getting back to her regular self. She has not smiled but would start looking at us and wanting to be held, touched or talked to. She also started making the Mmmmm sounds she usually does and would stare at her hand and stick out her three fingers. Although docs said she cannot put anything in her mouth, we let her lick the back of her hand (technically it was not “in” her mouth anyways… bad mommy!).
There was also talk about doing another MRI, and GI doctor recommended that we giver her acid reflux meds to help take care of the surgery site if she throws up. She also started her round the clock feeds, that were adjusted to 25 mls per hour to give her a gradual start.
We hoped she does well over night. Things have started looking up.
Day 4:
We woke up early then went to Sunday mass then right after, we went straight to the hospital. The very first question we asked the PICU nurse was if she had a seizure that night… she didn’t.
We started asking questions regarding discharge. They said that she might still need to stay a night but will most likely get transferred to a regular floor room if a room becomes available. Otherwise, if all goes well, she stays one more night here in the PICU then we can go home on Monday.
From the Neuro standpoint, we were told that her Kepra dose is now 2mls to be given twice a day. That seemed to have controlled the seizures, even if they have reason to believe that she had a high likelihood to have had a seizure because of the surgery. We had a discussion with the doctors regarding her blinking/jerking movements. We discussed the difference of neurological tics and myoclonic jerks. They did add, and stressed also, that as long as it does not hinder development, cause her to regress or to stop progressing at the rate she is already going, it should not be a cause of concern. Most likely her blinking/jerking is a myoclonic jerk and tics would come out, if she is going to have any, around the age of 1 and is most likely triggered by anxiety such as that of feeling awkward in a social situation, among other things that may cause a person to feel anxious.
We were also able to clarify with the neuro docs regarding mentioning the possible need for another MRI, they said that they have discussed it as a team and find no need for it right now, but they may need to request for an EEG. We told them that she has one scheduled in January. But they are going to put an order in to see if it can be done tomorrow morning since we will be here anyways. When they did the EEG on Day2 of our hospital stay, it showed irregular spikes in her brain activity which is most likely a result of her being administered ativan, and since she has not been sedated for more than 24 hours and has had no seizure activity, an EEG will most likely record better brain activity.
The CFT Doctor said we can try giving her semi solid foods via mouth to see how she does. They said to definitely not feed her via spoon… at least not yet. Her first semisolid food since Wednesday is a very yummy 25 ml serving of strained cream soup. She did not like it. She didn’t finish it. She only took about 5mls. Maybe because it is more like gravy and it would be better is it came with chicken. So I gave her some vanilla pudding instead and she welcomed that with an open mouth and an arm swinging, leg kicking dance. However, 20mls later, she threw up… all of the 25 mls and then some.
She did get nourishment via the kangaroo pump and she showed us that she did by passing out her very fist poo. Yey!
She has not been crying like how she used to. It is not so much how her cry sounds, but it seems that she is trying to suppress sounds coming from out of her mouth. She has been awake a lot today, would do occasional “Hmmms”, but she does not sound as frequently as she used to. Perhaps she is still trying to figure out how to move things around in her mouth.
She smiled twice to nanay today and she also gave a little one sided lip smile to her nurse. She also took a bath. Her BNrother and some froends also paid her a visit. Eloi got to hold her and play with her for a little bit.
I know that my son is trying to act all grown up and okay about this whole mommy-daddy-sister-all-in-the-hospital deal, and though a big part me wants to be with me want to be with him at home and leave Isabella with the care of the nurses, or have him be absent from school and bring him with us here, I want him to still have that sense of "normalcy" in his life. I also do not want him to know or learn about "worry", at least not yet... as long as I can keep him from that cause there'd be plenty of time for worry when he grows up. He told us, right before he left the hospital, that he is sure that we aqre going home tomorrow. When we asked him how he knows this, he says it's because it's been 5 days since we've been here. I guess he had enough of all this "separation".
When we kissed her goodbye for that day, we sent a short little quiet prayer that all goes well throughout the night and that tomorrow we will all be going home.
Day 5
We were greeted at the hospital with a talk about possible discharge. The concerns that might prevent her from being discharged is that of her feeding. Their hope is that throughout the day, she will be able to taken in the volume of semi solids and milk the way she regularly does it at home. Although we know that there are concerns regarding throw up we told them that “throw-ups” are a regular part of our life. So, throw ups, though it may not be the general “norm”, it is OUR NORM.
The day went by and the doctors gave us their updates. CFT had nothing more for her except that we need to see them back for a post-op appointment 2 weeks post surgery which is technically only 11 days from today. Neuro says there is no need for an EEG and that we stick to our already set EEG and neuro appointment 2 months from now. Renal also sends their ok and her creatinin and potassium levels are all good. GI also says everything is going well, except for the not feeding by mouth, which for them is not a red flag concern at this point, afterall she just had surgery in the mouth.
The PICU team asked if we feel comfortable about bringing her home despite the semi-solid feeding issue… in unison, my husband and I replied with a yes. They did add that if we do not feel okay with it, we can stay one more night, and for a brief second we did hesitate, but we responded with a resounding “Nahhhh.”
We picked up her set of meds, signed some docs, the beeping machines were wheeled away, the beeping machine attachments were taken out, the IVs were also taken out, and after a couple of pee pee diapers, a poopy diaper, a cat-nap, a bolus feed, 3 hesitant smiles, and a dose of pain meds later… we were sent home.
…and that my friends, is our 5 day surgery story and other things.
Saturday, November 20, 2010
Seizure Shenanigans
It was a regular Sunday morning at the Catiis residence. The sun was out and the breeze is nice and cool. Everyone was abuzz and busy with their daily morning routine and ready to begin with what started off as a relatively relaxed day, until…
8am Isabella coughed and had a little throw up and then she had this frozen expression on her face right after. Her limbs were limp and not moving. It was a seizure… wait it out, wait it out…
I then put her on her side so she does not choke on her saliva or possible succeeding throw up. Her body did some minor jerking movements. She is still seizing, wait it out, wait it out…
Then her eyes rolled up and her body stiffened. Still seizing wait it out, wait it out…
I held her and kept talking to her until the seizure episode, well, ceases. My son was asking me to make him breakfast, but I cannot. He noticed the look on his sister’s face. I had to tell him and explain to him that his sister is having a seizure. I asked him to wait it out with me and then I can make him breakfast.
Minutes passed (that seemed like hours) but she was still seizing. I believe she will stop for a couple of seconds and another one comes along, looking different than the last one. I called my husband (who left for the store right before everything happened) and instructed him to come home right at that instant. My son was already starving… but I cannot leave Isabella. I told my son to hold his sister’s hand and that we pray together to make the seizures stop. We prayed and prayed over and over… she would not stop seizing. My son even said, “Nanay, I don’t think the prayers are working.” I told him it will. They’d better work.
Eventually my husband got home and I instructed him to take care of Eloi before attending to Isabella. When he became available, he took her from me and that’s when I started breaking down. He kept talking to her and was even playing with her, probably thinking that he can distract her from having the seizure, but they just kept on coming.
I told him that now would be a good time to call 911 and so we did. While I was on the line with the 911 dispatcher, she started shaking… the seizures became grand mal and she started turning purple. That’s when I lost it. I prayed loudly and started giving her away to God. I was telling Isabella that if God is calling her to come home, she has a permission to go with him. I assured her she can go and that we will all be ok.
The paramedics arrived, checked her vitals, then took her to the nearest hospital. My husband rode with them.
I was not in the best state to drive. Good thing that the neighbors were on their way to church and saw the ambulance. They drove me to the hospital. I called friends to let them know what was going on and everyone stepped in and took in roles on who will take care of our son and the house and other things.
When I got to the hospital she was still seizing. The doctors and nurses had a lot of questions. We had to let them in on her litany of complications. We had to explain her syndrome. They do not know her here. We told them that she was under the care of many doctors at Stanford, and then they started making phone calls.
They gave her 2 separate doses of Ativan but she was still seizing. She had on oxygen and almost needed to be intubated, but she, like the trooper that she is, somehow managed to breathe not needing the support of a machine. The attending doctor got a hold of our neurologist and was instructed to administer Diastat. After the longest 2.5 hours of our life, the seizures stopped.
The Stanford team was on their way to pick her up. I went home to pack a hospital bag and made arrangements for work the next day and for Eloi’s school the next day. I wanted to give him a sense of normalcy amidst all the chaos. I didn’t want him to learn about “worry”… no, not yet.
The Stanford team picked her up and ambulanced her all the way to Palo Alto. We were instructed to follow and reassured us that she is in good hands and that we do not need to hurry. My husband and I drove ourselves up there, stopping at a Mcdonald’s to get a quick breakfast and to recollect ourselves.
On the drive up to Palo Alto, I would burst into tears… this time Edgar joined me.
When we got to the hospital, we found her in the Pediatric Intensive Care Unit. A Neurologist was already there at bedside attending to her. Isabella was knocked out and she had a fever. We spoke to the doctors recollecting the events of that morning. We were trying to figure out what might have caused the seizure. We told them that the day before she was baptized and we had a party and she skipped her afternoon naps because she was interested with everyone. She didn’t get to really fall asleep until 11 that night, and from 1 am onwards would cry and fuss every hour. The seizure trigger could have been that she was over stimulated from the day before, tired from the day before or she could have caught something and have an infection that may have caused the seizure, hence the fever, or she could just have a fever right after the seizure and the trigger is random. A blood and urine culture was ordered to check for infections.
The result of the culture is negative.
So what triggered the seizures? We had to ask the neuro doctors, and their response was that since seizures is a likelihood with Isabella’s syndrome, they think that it was just the time for her to have the seizures.
Will this be a regular part of our lives? 911 calls, her losing oxygen, ambulances, and emergency rooms? Not necessarily.She will be getting medication to control the seizures and she will be starting with a low dose of 0.5mls, and if she has a seizure for more than 10 minutes we can give her Diastat.
Will the medications control her staring seizures and the occasional brief blinking-jerking thing she does? No, it will not control the baseline, and reminded up that these small seizures were benign.
We left the hospital the following day, just in time for our renal appointment for that day at the clinic across the street from the hospital.
We went home with the good news that meds controlled her seizures within 24 hours and that her renal function is close to normal.
We pray that there will be no more seizure shenanigans.
8am Isabella coughed and had a little throw up and then she had this frozen expression on her face right after. Her limbs were limp and not moving. It was a seizure… wait it out, wait it out…
I then put her on her side so she does not choke on her saliva or possible succeeding throw up. Her body did some minor jerking movements. She is still seizing, wait it out, wait it out…
Then her eyes rolled up and her body stiffened. Still seizing wait it out, wait it out…
I held her and kept talking to her until the seizure episode, well, ceases. My son was asking me to make him breakfast, but I cannot. He noticed the look on his sister’s face. I had to tell him and explain to him that his sister is having a seizure. I asked him to wait it out with me and then I can make him breakfast.
Minutes passed (that seemed like hours) but she was still seizing. I believe she will stop for a couple of seconds and another one comes along, looking different than the last one. I called my husband (who left for the store right before everything happened) and instructed him to come home right at that instant. My son was already starving… but I cannot leave Isabella. I told my son to hold his sister’s hand and that we pray together to make the seizures stop. We prayed and prayed over and over… she would not stop seizing. My son even said, “Nanay, I don’t think the prayers are working.” I told him it will. They’d better work.
Eventually my husband got home and I instructed him to take care of Eloi before attending to Isabella. When he became available, he took her from me and that’s when I started breaking down. He kept talking to her and was even playing with her, probably thinking that he can distract her from having the seizure, but they just kept on coming.
I told him that now would be a good time to call 911 and so we did. While I was on the line with the 911 dispatcher, she started shaking… the seizures became grand mal and she started turning purple. That’s when I lost it. I prayed loudly and started giving her away to God. I was telling Isabella that if God is calling her to come home, she has a permission to go with him. I assured her she can go and that we will all be ok.
The paramedics arrived, checked her vitals, then took her to the nearest hospital. My husband rode with them.
I was not in the best state to drive. Good thing that the neighbors were on their way to church and saw the ambulance. They drove me to the hospital. I called friends to let them know what was going on and everyone stepped in and took in roles on who will take care of our son and the house and other things.
When I got to the hospital she was still seizing. The doctors and nurses had a lot of questions. We had to let them in on her litany of complications. We had to explain her syndrome. They do not know her here. We told them that she was under the care of many doctors at Stanford, and then they started making phone calls.
They gave her 2 separate doses of Ativan but she was still seizing. She had on oxygen and almost needed to be intubated, but she, like the trooper that she is, somehow managed to breathe not needing the support of a machine. The attending doctor got a hold of our neurologist and was instructed to administer Diastat. After the longest 2.5 hours of our life, the seizures stopped.
The Stanford team was on their way to pick her up. I went home to pack a hospital bag and made arrangements for work the next day and for Eloi’s school the next day. I wanted to give him a sense of normalcy amidst all the chaos. I didn’t want him to learn about “worry”… no, not yet.
The Stanford team picked her up and ambulanced her all the way to Palo Alto. We were instructed to follow and reassured us that she is in good hands and that we do not need to hurry. My husband and I drove ourselves up there, stopping at a Mcdonald’s to get a quick breakfast and to recollect ourselves.
On the drive up to Palo Alto, I would burst into tears… this time Edgar joined me.
When we got to the hospital, we found her in the Pediatric Intensive Care Unit. A Neurologist was already there at bedside attending to her. Isabella was knocked out and she had a fever. We spoke to the doctors recollecting the events of that morning. We were trying to figure out what might have caused the seizure. We told them that the day before she was baptized and we had a party and she skipped her afternoon naps because she was interested with everyone. She didn’t get to really fall asleep until 11 that night, and from 1 am onwards would cry and fuss every hour. The seizure trigger could have been that she was over stimulated from the day before, tired from the day before or she could have caught something and have an infection that may have caused the seizure, hence the fever, or she could just have a fever right after the seizure and the trigger is random. A blood and urine culture was ordered to check for infections.
The result of the culture is negative.
So what triggered the seizures? We had to ask the neuro doctors, and their response was that since seizures is a likelihood with Isabella’s syndrome, they think that it was just the time for her to have the seizures.
Will this be a regular part of our lives? 911 calls, her losing oxygen, ambulances, and emergency rooms? Not necessarily.She will be getting medication to control the seizures and she will be starting with a low dose of 0.5mls, and if she has a seizure for more than 10 minutes we can give her Diastat.
Will the medications control her staring seizures and the occasional brief blinking-jerking thing she does? No, it will not control the baseline, and reminded up that these small seizures were benign.
We left the hospital the following day, just in time for our renal appointment for that day at the clinic across the street from the hospital.
We went home with the good news that meds controlled her seizures within 24 hours and that her renal function is close to normal.
We pray that there will be no more seizure shenanigans.
Wednesday, November 10, 2010
The 11th Month
Current Stats:
Isabella measures 24 inches long and currently weighs 12 lbs. Our little guppy is getting closer and closer to becoming a beluga. Using the typical growth chart, Isabella is creating her own curve at the bottom. But when her weight and height were plotted on the WHS growth chart, she shows as an average WHS baby.
Feeding
The GI doctor and nutritionist still have concerns regarding her weight. They instructed us to gradually up her nightly pump feedings from 35ml to 40ml per hour. Throw ups are not completely resolved but less in frequency and volume. She throws up about 30 mls of feeds 1-2 times a day. Since she appears to be volume sensitive, we were also instructed to change her daily calorie intake per feed from 24kcals to 28kcals.
Seizure Scare
We had the biggest scare of our life 2 days before her 11 month bday. She had her first big seizure. It all started with a staring/freezing episode then a small throw up, then staring and some jerking and some eye rolling. We know she has seizures but since the neurologist said that they were benign we were just waiting-out the seizure episode. However, 30 minutes later of staying frozen with occasional jerking and her eyes just rolled up and being unresponsive, we figured it was time to contact 911. While waiting for the paramedics to arrive she started to do tonic clonic movements and some stiffness. She also turned purple. She was rushed to the emergency room, intubated, and was given three separate doses of Ativan, but it was not enough to make the seizures stop. Eventually they got a hold of our neuro and the ER team was instructed to administer Diastat. Then eventually the seizing stopped. Her whole seizure episode lasted for about an hour and a half. The Stanford team came to get her and she stayed in the PICU overnight. She spiked a fever after the seizure and doctors needed to know if the reason she had a seizure was because she has an infection which also explains the fever. So they ordered a blood and urine culture but the results were a negative. So doctors said the fever was caused by the seizure and the cause of the seizure is unknown. Neurologist thinks it was just the time for her to have the epileptic seizures that is not uncommon to children with WHS. The doctor ordered daily doses of Keppra to control seizures. We have yet to see how the medicine affects her, but so far, Isabella seems to be back to her usual self, except that she seems to have lost the muscle strength to sit with minimal support from an adult. What is really important for us right now is to have the meds control the seizures and for us to NOT have to go through this big seizure scare ever again.
Renal Report
She can turn with ease from side to side when put on her back and can bring herself to roll easily from her back to her belly. She can push her arms to hold her chest and head up when on her belly. She likes being on her belly and will happily kick her legs which causes her to pivot on the mat/blanket. We think she sometimes does it on purpose so her body will turn to face where she wants to go, such as to face wherever we are sitting in the room so she can see us. She also pulls her knees in so her butt is sticking up. Could it be that she is at the throes of discovering crawling?
She puts her thumb in her mouth and would lick the back of her hand or the inside of her arm to soothe herself. Every now and then she would scratch her head to make herself fall asleep.
She likes to be where everyone is. She cries when she is left in the crib and she cannot see anyone. She smiles when we put her on the highchair and we roll her to the dining room so she can be there while we eat. Every now and then she will make a sound as if she is calling us to look at her and when we do she flashes us a big gummy smile. She still makes “Mmmmm” sounds, but occasionally we hear her do an “Aaahhh”.
She cries to be held and when we hold her she does not want to be held facing mommy’s body. She would keep moving and turning because she prefers to face front so she can see everything and everyone. She enjoys watching people. She still does not play with toys nor does she show interest in them just yet…. She is more interested in people.
We’ve seen her do a social giggle, but she still does not do it consistently. Social smiling is definitely established.
Upcoming Medical Stuff
Isabella is scheduled to have her cleft palate repair surgery next week. The CFteam seem very confident about doing the procedure to our daughter, who they claim to be their youngest patient yet. They are saying that since Isabella only has a cleft on the soft palate, it should be easy for them to get in there and close it and that the whole procedure would only take about 2 hours and she would only need an overnight stay at the hospital.
Isabella measures 24 inches long and currently weighs 12 lbs. Our little guppy is getting closer and closer to becoming a beluga. Using the typical growth chart, Isabella is creating her own curve at the bottom. But when her weight and height were plotted on the WHS growth chart, she shows as an average WHS baby.
Feeding
The GI doctor and nutritionist still have concerns regarding her weight. They instructed us to gradually up her nightly pump feedings from 35ml to 40ml per hour. Throw ups are not completely resolved but less in frequency and volume. She throws up about 30 mls of feeds 1-2 times a day. Since she appears to be volume sensitive, we were also instructed to change her daily calorie intake per feed from 24kcals to 28kcals.
Seizure Scare
Renal Report
Kidney doctor says that her kidneys are close to normal functioning. We can try to give her a little bit of food rich in potassium such as potatoes, squash, avocados, and bananas. Another VCUG to check if her kidney reflux has resolved itself will be done around May of next year. Creatinine and potassium levels in her blood read normal.
She can turn with ease from side to side when put on her back and can bring herself to roll easily from her back to her belly. She can push her arms to hold her chest and head up when on her belly. She likes being on her belly and will happily kick her legs which causes her to pivot on the mat/blanket. We think she sometimes does it on purpose so her body will turn to face where she wants to go, such as to face wherever we are sitting in the room so she can see us. She also pulls her knees in so her butt is sticking up. Could it be that she is at the throes of discovering crawling?
She puts her thumb in her mouth and would lick the back of her hand or the inside of her arm to soothe herself. Every now and then she would scratch her head to make herself fall asleep.
She likes to be where everyone is. She cries when she is left in the crib and she cannot see anyone. She smiles when we put her on the highchair and we roll her to the dining room so she can be there while we eat. Every now and then she will make a sound as if she is calling us to look at her and when we do she flashes us a big gummy smile. She still makes “Mmmmm” sounds, but occasionally we hear her do an “Aaahhh”.
She cries to be held and when we hold her she does not want to be held facing mommy’s body. She would keep moving and turning because she prefers to face front so she can see everything and everyone. She enjoys watching people. She still does not play with toys nor does she show interest in them just yet…. She is more interested in people.
We’ve seen her do a social giggle, but she still does not do it consistently. Social smiling is definitely established.
Isabella is scheduled to have her cleft palate repair surgery next week. The CFteam seem very confident about doing the procedure to our daughter, who they claim to be their youngest patient yet. They are saying that since Isabella only has a cleft on the soft palate, it should be easy for them to get in there and close it and that the whole procedure would only take about 2 hours and she would only need an overnight stay at the hospital.
To read about Isabella's previous developmental update, click here
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