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.
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.
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.
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.
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.