Updates on Angelica
Here are the latest happenings with Angelica.
10/23/23 So after such a wonderful day yesterday, today happened. Angelica had a seizure in her sleep while at day care. Thank goodness they knew what to look for, they are so awesome there. They followed the procedure set up by Angelica's mom Brittany, and they called her. She told them to video tape the episode. After reviewing it, Brittany told them to call 911. She was transported to the ER by ambulance. She continues to have seizures. But she is in stable condition for now, but extremely exhausted. She will be getting transported to Children’s Hospital in Milwaukee. I will continue to update everyone as much as I can. Please share and pray for her! We are beyond heartbroken.
10/25/23 Angelica had a small seizure at 3am and a longer one at 6am. These seizures are coming from the right side of her brain. We are waiting for neurologist to come in to see what we do from here. My guess is adding another med or increasing them. She is eating once in a while just extremely tired.
10/26/23 So far Angelica has not had any seizures since her last episode yesterday at 3PM. They have confirmed that the seizure started on the right side of her brain and seized her entire right side and then jumped to the left side of her brain and seized that entire side. Which is why her respiratory was affected and she coded. They have adjusted her meds and she seems a little better. They took her for an MRI this morning. The results will take time. They are hoping to find out why her right side of her brain is seizing and what can be done about it. Her brain surgery has been cancelled as of now, because she now has seizure activity on both side of her brain and will need to be medicated for the rest of her life regardless. They are still in ICU, but may be put back into a regular room soon if she stays stable. This has been an emotional rollercoaster for the family. Thank you for your continued support and prayers!
10/27/23 So far so good. Angelica has had no seizures since the Wednesday one. They have been weening her off of one medication because it is a medication that cannot be given at home. She is down to one dose today and tomorrow she will be off of it. So hopefully no seizure occurs. The neurology team and the epilepsy team met with Brittany & James today. She was sedated for the MRI with contrast. That showed malformation of blood vessels on her right side of her brain which is caused by the Sturge-Weber. It is extremely rare to have it on both sides of the brain. She continues to be monitored by EEG and bloodwork to keep track of her medication levels. The goal is to find the right medications and dosages to keep the seizures from happening. For the future, the next 6 months will be crucial as more things can develop along the way. So we will see what tomorrow brings. Thank you to everyone for your thoughts, prayers, donations and meals! It is a tremendous help!
10/28/23 Unfortunately, another setback. She had a seizure at 3:30 am this morning. Oxygen dropped, but not as bad as before. They still had to help her breathe. At that time, the team were discussing what to do medication wise. They tried a new med mid-day. Then she had another seizure at about 3pm, this time on the left side of her brain, that lasted 40 minutes. All 4 doses of rescue med were used to bring her out of it. They will continue to give the new medication, but the team is very confused as to why she is still seizing with the levels of medication in her little body. If she seizes again, they will need to do the Versed drip. This is where all brain activity is shut down, almost like a reset. If this happens, she will be sent back to ICU for closer monitoring. Finding the right medications and doses seem to be very challenging. She is one strong little girl! I also forgot to mention that her MRI showed she has an ear infection in her left ear. So, she is on medication for that as well. She just can't catch a break. I don't see them coming home anytime soon. She has to be on oral meds a couple of days before she can go home. We have to make sure they work. We are not close to that yet. Pray for a peaceful night and no more seizures.
So throughout some of the early morning hours, Angelica had 6 sub clinical seizures. Those are seizures you cannot see. They happen when she is sleeping. The doctor administered a medication and it stopped the seizures. Today they are switching some meds and doses out to get them under control. If she has a clinical seizure, they will take her to icu and do the versed drip. That stops all brain activity. Then continue with adding medications. The earliest she could come home is friday. James came home today to be with cassidy and try to get her to a normal schedule. We hope the seizures dont return and this new med combo works. Now we wait...
10/30/23 Seizure free for over 48 hours. This is great news! However, she is running a fever. They are not sure if it is from the ear infection (she is on amoxicillin) or a different infection. Her midline (a deeper IV) came out of place, so they removed it. Now it won't stop bleeding. They may have to put a stitch in there to close it off. They are also making sure there isn't a blood clot in that arm. Her other IV line infiltrated (blew). So, they have to find another vein for that. Her arms are a mess. Running out of veins. They are taking blood to run tests to see if they can find the source of the infection. They also need to put a catheter in to check for bladder infection. They did a nose swab to check for respiratory infections and all came back negative. They will be doing oral medications for the seizures starting this evening. They will also be administering a stronger antibiotic to clear up any bacterial infection she may have. She has been through a lot of picking and probing today. We are hoping they find the infection and they get the fever under control. and that she tolerates the oral medications, and no seizures return.
Update 10/31. No seizures! Angelicas fever has been under control with Tylenol. They gave a dose of a stronger antibiotic to hopefully knock out her ear infection and any other infection she may have. Her little body is fighting so much off. She is taking her oral medications for seizures good. They have confirmed she does have a blood clot in her arm. She will need two shots a day in her thighs of medicine to thin her blood to move the clot. She will need this medicine for 6 weeks. Today was a better day. Hopefully if all goes well, they can come home Friday. Keep those prayers coming! We appreciate all the love and prayers.
11/1/23
Great news! Angelica was released from the hospital today! We brought them home and they are settled in and resting. Praying the medications keep working. Her fever is gone. and she is taking shots for the clot in her arm. She will be monitored closely. Mom will be staying home with her for the rest of this week and the next to make sure she is well enough to go back to day care. Thank you everyone for your prayers & support!!!
Update 11/4. Angelica is doing ok. She is very weak. Each day seems to get a little better. Administering her meds is challenging. She spits them out a lot. She is taking her injections for her blood clot like a champ. She is one strong little girl! Mom will be staying home with her for another week to make sure she is stronger and ready for day care. She has a neurology appointment on Wednesday to discuss the plan moving forward. There will be many trips back and forth to Children's Hospital. Keep those prayers coming.
Update 11/8. Angelica had a follow up visit with her neurologist today. He is very happy about how she looks for being out of the hospital for such a short time. She is eating more. So, she is up almost a pound in a week! Her eye movements have improved since the last visit with him. This tells him that her right side of brain is re-wiring and learning to do these things that her left cannot. Her medications will be increased every 5 days until the dosage is reached. He is confident that the medications she is on, will be good maintenance meds. She does have stiffness and weakness on her left side (her left arm mainly). She had a physical therapy appointment yesterday and she did so good! She could hold her head up longer than she ever has been able to! She worked hard and she did a great job! Her next appointment with her neurologist is in December. Hopefully we will see more improvements by then. Mom will continue to stay home with her until she is strong enough and most of the sickness leaves the day care. Thank you so much for your continued support, prayers, meals and donations! The money is being used to help pay their bills while they are off from work.
Update 11/11. Angelica has had a few rough nights. She is waking up between the hours of 11pm - 2am screaming like she is in pain and inconsolable. This is very out of character for her. She is a pretty chill baby. It could be a lot of things causing this. Like teething or not feeling well (she has a little cough right now and a low-grade fever). But even with Tylenol she continues to cry. She has been crying for 3-4 hours each night. Needless to say, mom is not getting much sleep. Dad gets up to help, be he can't console her either. Mom messaged her neurologist. They don't have any answers. She had an Occupational Therapy consult yesterday. She thought maybe Angelica has fluid in her brain from the seizures, and that lying flat may cause pressure and pain in her head. So, they will try to elevate her when she sleeps to see if that helps. She will now have OT and PT weekly to help with her muscle stiffness and strength. Please pray this is nothing serious. Hopefully this will pass. Mom will be off from work next week as well to give her another week for her to recover.
update 11/16. Things were going along much better after the last update. The inconsolable crying had stopped. She was eating again and sleeping better. But starting on Wednesday, she began arching her back/neck and crying like she was in pain again. Also, she is having a hard time swallowing. Mom took videos and talked to her Physical therapist first. She thought it was a neurological issue. So mom called her neurologist. They recommended she be brought to the ER. But taking her to the ER here in Green Bay is a waste of time, because they will want Children's hospital to treat her. She is not in critical condition. So we will be heading out tomorrow morning to the Children's Hospital in Milwaukee's ER. We are speculating it could be muscle spasms in her neck, or acid reflux. She can drink her bottle fine. But swallowing her medications and her spit, is a challenge. I will post an update on how our ER visit goes.
Update 11/17. We took Angelica to the Childrens Hospital ER today. She has acid reflux. I am sure with all the meds she has to take it may cause some acid reflux issues. Her muscle on the left side of her neck has spasms sometimes as well. With her having physical therapy more often, she will be sorer after. So, some discomfort may be coming from that too. This can cause her to arch her head back and favor the left side. She will have to take a medication for the acid reflux too. But I'm sure this is painful for her, so she needs something to help with the acid reflux. She will follow up with a GI doctor in about 4 weeks to make sure the medicine is working. Hopefully things will get better for her soon. Mom and Dad plan on taking her to Daycare on Monday.
11/21 update. Angelica seems to be doing better since taking the medication for her acid reflux. Giving her the medications continues to be a struggle. A date has been set for the benefit for the Dobry family. It is Saturday, March 2. It will be held at Scolly's Hometown Pub, in Pulaski WI. A flyer is being made and I will share it on here with all of the details. The website is almost completed as well. We plan on having a silent auction, bucket raffles, food and music. We are also selling t-shirts. All proceeds will go to the Dobry family. The image is attached. Please let me know if you would like to Pre-order one. They are $20 each. Your choice is Gildan or Bella Canvas unisex T-shirts in adult or youth size. Youth size is S is 6/8, M is 10/12, L is 14/16 and XL is 18/20. Thank you for your continued support!
11/27 update. Angelica is doing better. She is getting stronger every day. She is holding her head up much better and no signs of the acid reflux. She has an upcoming appointment with a psychologist to check for delays and the GI doctor to see if they continue with the GI medications etc. She also has an eye appointment coming up to keep watch for glaucoma. We visited the Doby family Sunday, and Angelica had her first taste of carrots. Due to her swallowing issue, they haven't been able to try puree but they tried again and she did good! The first taste was a face like she ate a sour pickle. But after that, she kept eating. We are moving in the right direction. We continue to work on the flyer and the website.
Update 12/5. Angelica had an eye appointment today. The Dr. said no signs of glaucoma! It's nice to get some good news for a change. She has another appointment on Friday for a psychology test. I'll update how that appointment went too.
12/9 update. Angelica had an appointment with a neuropsychologist yesterday. She was tested to see where she is at developmentally. She did an awesome job! She is getting so much stronger and doing more things each day. Right now, she is at about a 5-month-old age developmentally. She is not quite 8 months. She will develop at her own pace on her own time. She will go back in 6 months to be re-tested. Fingers crossed she will continue to get stronger each day. The t-shirt order will be going in on Monday. You will be contacted once they are done. Thank you to everyone for all of your support! It is very much appreciated!
12/15 update. On thursday dec 14 Angelica had an appt with hemotology to check on her blood clot. So the clot is there but a vein has started to reroute around it. So the shots must continue for 6 more weeks. On their way home Angelica was very lethargic and began to vomit. She vomited throughout the day. Around 8pm mom called me and said Angelica had a seizure and she called 911. She was transported to st. Vincent er. We were there for over 4 hours with several doctors trying to get an iv in her. We decided to try pedialite. She was so out of it she would not drink. Then she woke up and had a 50 minute seizure. The flight nurse was the only one who could get a line in. But he did. Rescue seizures were administered. Then she was transported by Eagle III to childrens hospital. We r here now. She is stable. I will post updates when i can. Please pray for our Angel.
12/16 update. Angelica is still in PICU. She had several seizures yesterday, but short ones. They are adjusting her meds. By yesterday afternoon, she was doing much better. She had a 7oz. bottle in the afternoon. Her color is back and looking like herself again. This has been the fastest recovery she has had, which tells us the medications are working, but finding the right doses are always challenging. I came home last night to sleep and pick up some items for myself and Brittany. I'll be heading back there today. Hopefully she will be moved to a regular room and monitored. If no seizures for 24 hours, she can be discharged. I'm thinking she may go home tomorrow if there are no setbacks. Thank you so much for all of your prayers! We appreciate your support more than you know. I'll will update how today goes later.
12/17 Update. Angelica was discharged today! She is doing well. She is herself again. Some adjustments to her meds did the trick for now... She got the rhinovirus again and this is what set off her seizures. The seizures came from just the left side of her brain this time. No seizures are good, but her left side seizures/focal seizures are not as bad as the right side of the brain seizures. She was rolling over, giggling and all smiles today. Thank you all for your donations, prayers and support!
I do want to share a story with you all. Today as we were leaving the hospital, we had to stop by and pick up Angelica's medications. As we were waiting, I noticed a lady who you could tell something was very wrong with her. She attempted to get her medication but didn't have the money to pay for them. I told Brittany what I overheard, and she ran after the lady and told her she would pay for her medication. The lady was overwhelmed with appreciation. As they were standing in line, she told Brittany she had a beautiful baby. Then said, my daughter is brain dead. This medication is for me. It is one week before Christmas, and I don't know what i am going to do. She hugged the lady, and she went on her way, back to her daughter she now has to take off of life support. Yes, our weekend was horrible. Angelica went through hell again. But we get to take her home. Thank God for the blessings you have. Some have it worse. We paid it forward today. You all have been so generous to the Dobry family, we wanted to pay it forward to someone else who is suffering and needs the help.
Angelica has a couple of upcoming appointments this week. I will update how they go. God Bless all of you!
12/22 Update. Angelica had a few appointments this past week and I thought I'd update everyone on how they went. Tuesday she was back in Milwaukee to see her neurologist. He is pleased with her recovery. He is confident that her right brain is learning what the left cannot. She is now holding a rattle in her left hand and shaking it. She is sitting up much better. Her head is more in alignment too. So, this last hospitalization, she didn't regress or have to re-learn things. Wednesday, she had a consultation for a new clinic to do additional OT, PT and speech. It went very well. They want to get working on her neck area to help correct the Torticollis as if not corrected, it can be permanent. On Thursday she saw her GI doctor. The discussed doing a swallow test. Also, they have speech therapists there too. She needs the speech therapy to help with her tongue and swallowing. They felt the acid reflux medication was helping, but they did increase it due to her weight. They plan on keeping her on this until she is 12 months old. Angelica continues to improve every day! We are so thankful. Wishing everyone a very Merry Christmas!
12/27 Update. We hope everyone had a very Merry Christmas being with family and friends. Now we get ready to bring in the new year. Angelica is doing well right now. She enjoyed all the chaos and action of the holidays. I will post some pictures at a later time.
12/31 update. I wanted to give everyone an update on Baby Angelica. She has been sick with a stomach flu. We took her to the ER on Friday to see if she needed fluids. They gave her an anti-nausea medication and we were told to try to keep pushing fluids. It has been a rough past few days. She continued to vomit from Friday early morning, until last night some time. We are hoping she can fight this illness off without setting off a seizure. She has been able to keep most of her meds down. But getting her to eat is a struggle. As we ring in the New Year, I pray Angelica makes progress in 2024 and things get better for her. She needs a break! Wishing everyone a very Happy New Year!
1/2/24 Hi everyone. I just wanted to give an update on Angelica. As you know we ended up in the ER this past Friday due to her puking and not being able to keep her bottles or medications down. At that time we were sent home with a med to stop her from puking to help keep her meds and and were trying to get fluids into her orally by eating. As the weekend progressed, she continued puking and not eating and was getting weaker, less active and sleeping more. Her lips were dry and she was not having wet diapers. At this point, we brought her back to the ER on Monday 1/1/24 for dehydration. She was given two 30 minute doses of fluids and they also found she has a left ear infection. All her labs came back good and no infection could be found. Most likely a viral GI bug with a mix of an ear infection. She was given IV antibiotics at the hospital before leaving and is also going to take amoxicillin to help rule out any other possible infection she might have. Right now, she is home and stable. Her color is back and she has been sleeping peacefully. Hopefully tomorrow will be a brighter day with her more active and eating good with no more puking.
As I'm sure you all can see, I am writing this in the early AM as it has been a long day but I wanted to get an update out as my mom, who has been doing all the updates and posting for us is having to deal with her own problem of my grandfather being sent to Milwaukee for a possible stroke and brain bleed. I will also be busy with taking care of not only Angelica but Cassidy as well as she has a possible ear infection too that we need to have checked tomorrow as well. Needless to say, our days have not really calmed down and our start to the 2024 year hasn't gotten off on the right foot but we hope we will start to see the light at the end of the tunnel soon and start to have more calm days than stormy ones.
Thank you to everyone who has donated, gave meals, helped out at home, supported us during Angelica's hospitalizations, etc. Just know that we wouldn't be in the place we are today without all of you sending your love, prayers, and support our way. And thank you to my mom Annette for keeping everyone updated allowing us to keep our focus where we needed it to be.
Thank you all again and god bless!
1/9/24 update. Hopefully everyone is prepared for our winter storm! I thought today would be a good day to give an update on our baby Angelica. After she received fluids at her last ER visit, she seemed to be doing ok. But the vomiting has continued on and off. We are not sure what the cause is. The virus should be over by now, so we are thinking there may be another cause. She is eating less and starting to lose weight which is very concerning. Brittany has been in contact with her GI doctor and neurologist. The volume of meds seems to fill her up and she doesn't want to eat. They will be scheduling a swallow test to see if that has anything to do with it. Also, with her having acid reflux, the vomiting could be caused from that. More questions than answers right now. Hopefully, the vomiting will pass, and she will be able to eat more. Continued prayers are appreciated. If you haven't checked out the event posted to Angelicasjourney on facebook, please do. This is a meeting I will hold at my home on January 21st for anyone who can volunteer for the benefit. I will provide a lite lunch. If you could please let me know if you can make it or not, that would be great. This way I know how much food will be needed. Thank you again for all of your support!
1/14 Update. We went to visit Angelica & Cassidy yesterday. Currently Angelica has the coup. So she has been a little fussier than normal. While I was holding her, she had a one-minute seizure. This consisted of her left leg twitching. (So this means it was coming from the right side of her brain). Thankfully it only lasted one minute, and if was just her left leg. Brittany contacted her neurologist, and they are increasing one of her meds. She had a rough night last night. She didn't sleep well (and neither did mom or dad). Plus Cassidy is suffering from night terrors as well, so she was up screaming in the middle of the night. Angelica seems to be back to normal this morning. But she is being monitored closely. We pray the seizures stay under control.
1/21/24 Hi everyone. Just wanted to provide everyone with an update on how Angelica is doing since her small 1 minute break through seizure on 1/13. After that happened we reached out to the on call neurologist who temporarily increased her Trileptal seizure medication in the PM to help cover any other possible break throughs. On Monday 1/15/24, we were in contact with her neurologist and he decided that we needed to increase her Trileptal long term and have now maximized her Trileptal dose for her weight and age. This transition happens this past week and she adjusted well after about 3 days of being more tired. This is a common side effect of increasing Trileptal but once the dose is leveled out in the body, that goes away. She is now back to her normal self and routine with no further break throughs. As for other aspects, she now goes to PT and OT at the CP therapy center in Green Bay on top of still getting PT and OT from birth to 3 as she can as well. We also went and got evaluated by speech therapy to start that hopefully in the next week here. They will be helping her with eating baby foods, drinking from cups, etc. to start. These all are 3 appointments a week we take here to, me or dad, and sometimes there are other appointments with her doctors thrown in the mix as well. She has her 9 month appointment this past week too and she is still doing good. She is in the 44th percentile I believe for height and weight which we are watching because we don't want her to continue to drop too much either. Still have some drainage and cough but over all is doing good. Tuesday this week we will be going to be evaluated for a helmet per her PT and primary physician. They feel she would benefit from a helemt to help with some flat spots and her overall shape but we need a plastic surgeon to confirm her suture is still moving and hasn't closed otherwise a helmet is no longer an option. February we will meet with her neurologist again and she will also be having a swallow test done just to make sure there are no other concerns from that aspect. We continue to push and work on getting her strong and doing all we can to be sure she had every opportunity given to her to grow. We are able to do all of this with the amazing support from everyone Your love, support, help and prayers help us to keep pushing knowing she has an amry behind her all the way praying and cheering her on. We will contine to post updates as we can and after appointments for updates as well! Thank you all!
2/3/24 Hi all. Thought it was about time I gave you all an update. Angelica has been doing great since her last breakthrough and medication increase. She has also for the most part not been sick. Running nose and cough but that is all and comes and goes. Right now, our main focus is therapies. Monday's we do speech, Tuesdays are OT and Wednesdays are PT all at the CP therapy services. She also gets OT and PT weekly through birth to 3 as they can work them into her schedule. She has been doing good at them all and growing stronger. She can now fully rollover by herself to her tummy if she pushes hard enough. She cal hold her head up longer by herself. She is working hard on self sitting and is getting better. Working to strengthen her core for more stability. Her torticollis is improving but she has days it really bothers her yet. Next week Friday Feb. 9th we have a CT scan to check if her sutures on her head are all open or if some are closing or closed. We are hoping they are all open otherwise this means she would need a surgery to open them back up to allow her head to keep growing. Fingers crossed we get good news next week on this. We have a follow up appointment with her neurologist on Feb. 14th and a swallow test the same day. Then we have a GI follow up at the end of the month on the 29th. There might be a few more here and there but I just don't remember them all right now lol. So far this is all I have for you all. We will continue to post updates as we go to more appointments and if anything changes. Thank you again for all the love and support
2/4 Things can change so fast. Angelica has been having seizures. She was brought to st. Vincent by ambulance. It took 2 hours to get a line in. She is now being transported to Milwaukee childrens hospital. Britt and i are on our way down now. Please pray for her. She is going through so much. I will keep u posted as i can.
2/5 update. Angelica was hospitalized yesterday for seizures. She has a respiratory virus that probably set off the seizures. The seizure are coming from both sides of her brain. She was given a big dose of anti seizure meds. She has not had a seizure overnight. She is weak and exhausted, but stable. She is eating in small amounts and slowly getting back to her base line. They will continue to monitor her for seizures throughout the day. If she stays stable, She may go home tomorrow. We pray that she does. Thank you for all of your prayers.
2/6 Update. Angelica was discharged today and is home resting. She is doing very well. She recovered quickly from the cluster seizures she was having with a big dose of phenobarbital. The virus is what set off the seizures. There is now a plan in place for her when she becomes ill. An additional dose of one of her meds can be administered on the onset up her being sick for 5 days. Hopefully this will keep the seizures from breaking through. We were also able to get her CT scan done to check her sutures in her skull to make sure they didn't close too early. I will update you when we know the results. Thank you again for everyone's prayers! We appreciate all of them!
2/17 update. A lot has happened since the last update. First, Angelica had a CT scan to see if her skull closed too soon. They were unable to make that determination. She will now go to a cranial doctor to have them take a look. If the skull closes too soon, the brain cannot grow. She will have to have surgery to open up the "sutures" to allow for her little brain to grow. Next, she had a swallow test done. It showed that baby Angelica is very weak. Her face, tongue and mouth muscles are very weak. This makes drinking her bottle very hard for her. She is not eating enough to keep her growing and healthy. They believe she may be aspirating (her milk may be getting into her lungs) which can cause respiratory issues. Which we have seen. Then that sets off seizures. That same day, she saw her neurologist. They talked about her medications and the levels of her medications. Adjustments to her medications will begin. He also is very concerned about her milk intake. He is recommending that she have a GI tube (feeding tube) put in. This way they can supplement the milk intake without her having to swallow it. Plus, her medications can be given through the tube as well. We have to do what's best for her. and this maybe it. Please continue to pray for baby Angelica.