It's been a really, really long time... I am going to keep this short.
Emileigh's birthday was a big success. She did really well with the noise and so much visual stimulation (which was a relief). We we surprised by my sister when she gave us three big boxes full of birthday cards and packages... over 600 of them! We got stuff from all over the place, even Mexico and Ireland! So to those of you who participated we cannot thank you enough!
She really did well through September and even October. We went to her new pediatrician (there is a special needs clinic at Children's) and opthamologist in September. The pediatrician ordered a suction machine which we have not had to use yet, it is mainly for when she is sick and has a lot of secretions in her mouth and sinuses. It is another thing that will make things easier, especially considering I was using a bulb nasal aspirator before. The opthamologist said she can see fine and everything is healthy but she will need corrective surgery for her eye muscles. When she focuses on something she only can use one eye at a time because her eyes go inwards slightly. So that makes it really hard for her to process the world (on top of the fact that she has other problems processing her environment). So that will be sometime next year after we go back to see Dr. Schwartz in January. Other than that we have had a bunch of outpatient check-ups.
Now as for therapy, she started Speech back in the middle of September and has been doing extremely well with it. She has been doing very small tastes (of bananas and berries) and oral stimulation and she loves it. She has Speech once a week and Physical and Occupational therapies (one or the other) once a week. Everyone is very impressed with how far she has come. She moves her head side to side more but she still favors her right side. We are still waiting for her wheelchair/stroller, collar and bath chair that were ordered at the end of August. I cannot wait for those to be delivered.
For all of those things (and many more) we have been blessed.
We are very happy for her progress but we have had some other things going on as well. There is no easy way to talk about this... part of the reason it took so long for me to write again was because Jacob and I have two dear friends who lost their baby in October. I don't want to go into details because it is not my place, it is their story to tell. So we have been trying to be there for them and be sensitive to their feelings as well. We are trying to learn along the way what helps and/or hinders their healing and coping. So with that being said I wanted to keep my post short so you all can take this time to reflect on your blessings.
My heart is heavy. Please pray for them.
<3 Mighty Max <3
Thursday, November 15, 2012
Monday, September 3, 2012
Surgery and post-surgery
Well it has been nearly three months since my last post. A lot of things have been going on at home and in my head. I wasn't sure if I wanted to continue with the blog due to my irregularity and some privacy concerns. But I will continue onwards to document our journey.
A few weeks after my last post I still hadn't heard from Surgery so I called my go-to gal, Rebecca with the Feeding Team and she got it done. We had less than a week from when we scheduled the surgery to the date of surgery. It was set for July 5th. Now, you all must understand that July 4th is kind of a big ordeal for my family. It is my Grandpa Nagele's birthday and we have always had a big party. My parents have been hosting it for years and this year they had it again. My father is one of ten children, and has two aunts; four cousins from one and seven cousins from the other. Well, all the cousins have kids my age and we are all having kids now... so it's a lot of people! I think my mom was anticipating 125ish total. We also have two meals and games. Well the party was planned for July 4th and Em's surgery the next morning. So we were busy before her surgery, which is how I like it. Not a lot of time to think about it.
I went to my parents place the morning of the party to make mac-n-cheese (and utilize my mom's kitchen :D) and try to help out as much as possible. A lot of my dad's family helped this year and came early, which was sooo nice! And this year it was a hot one. We spent the majority of the day in the house with Em. She got to visit with family, met some of our family for the first time, had one last swim and a quick photo shoot with an ear of corn and we eventually went home.
The next morning we got up early and went to Same Day Surgery. Her surgery started on time but went over a little bit which stressed me and Jake out. But no complications and we eventually went back to recovery. The nurse there asked us if we wanted to see it and I said no. Jake and I were starving, hadn't eaten anything substantial since the night before, and I pass out easy. So she called our nurse we would have upstairs in A4 and when she told her Emileigh's name she knew us. Haha! We had had her before and her mom and my mom were childhood friends. It was nice knowing someone would be there that knew her history. We eventually were transported and settled in our room. Jacob had to work the next day so he left late that night and my Aunt Mare stayed with me. My mom has scoliosis, among other ailments, and I have a hard time having her stay in the hospital in the uncomfortable chairs and horrible pull-out bed. She would stay, if I had let her.
For reference here are a few pictures to give you an idea of what I'm talking about in the upcoming paragraphs:
So, anyways, Em was just on IV fluids and pain meds for 24 hours. Changing her diapers became difficult and she wasn't doing so good. Her back arching came on full force, she was vomiting, screaming like I had never heard before, and inconsolable for a majority of the time. I really thought to myself "what have I done?" Everything was going so good and then I had to go and do this and make her miserable. At one point my sister showed up to visit and I about lost it. They were putting a tube down her nose and into her stomach to suck the fluid from her stomach in hopes she wouldn't vomit so bad. Ellen said she could just tell. Looking back I really don't know how I didn't spontaneously combust. We eventually went to radiology and they did a contrast study and decided to pull her tube out a little more. The balloon was causing her to vomit by blocking her intestines. That helped a bit but it eventually went back to how it was. It got bad enough that by day three the Medical Response Team had been called twice and the second time we were sent to the PICU.
We stayed in the PICU for three days. I actually liked the PICU. We had a hospital bed AND a recliner! We just couldn't eat back there but I will give up food in my room any day to have a bed OR recliner in my room. I felt at ease there and was able to start joking with the staff again. And for the second time since January we had a doctor who knew someone with a PMG child. In the PICU we had a overnight doctor who knows Robert Rummel-Hudson and asked me if I had read his book. I think she could tell by the look on my face at how shocked I was that she even knew what PMG was. We had a quick chat and she had to go but she eventually saw Em vomit and could not believe it. Finally a doc had seen it! I think her seeing it allowed us to stay a little longer.
We eventually were moved back to A4 once a room was open and I was adamant about having that hospital bed in my room. And by golly, we kept it. We rode on it to A4, signed a waiver, and wa-la! Mommy and Em got to continue sleeping at night in a bed for the rest of our stay. We continued trying to get her comfortable and stop the vomiting. We had another contrast study and they deflated the balloon a little and pulled it out again. I happened to run into our GI doc in the hallway and he said he hadn't had that happen before (having a tube pulled back twice in a week). But he reassured me that if the balloon was the problem that there were ways to fix that.
Her vomiting got slightly better each day and on day 11 we went home. Once we were home I did feel better that I would be able to shower and sleep more "normally" but coming home also stresses me out. Honestly, I don't remember much after we came home. It must have been pretty uneventful besides the regular stuff that comes with a tubie and the new stuff of stoma care. She did develop granulation tissue around her stoma and a script for steroid cream was sent to the pharmacy. So we started that 4 times a day for a few weeks. After that we didn't have any issues until the day before Jacob and I were planning on going on a long weekend to Lake Douglass near Sevierville, TN. I tried all freaking day to get someone to see her and got the run around with everyone. Eventually we had to take her to the ED. We got in around 5 or 5:30pm and they diagnosed her with a UTI and about 4 hours later we were home. Quickest ED visit EVER!
Jake and I went on our trip and Em did fine. Once we came home we had to start a second round of steroid cream on her stoma and she had developed thrush on her tongue. So I called our pediatrician and told them she does not take anything orally. They phoned something to the pharmacy and I go to pick it up and guess what?! It was an oral liquid (1 mL 4x a day)! Freaking awesome >:/
All while this was going on I was convinced her tube site looked weird. We took pictures of it to show some nurses and I talked to a few people and they said it seemed fine. Finally, I called and said for my sanity that they needed to look at her. We brought her in and the nurse practitioner within a minute said she was sending us to interventional radiology... meaning she thought the balloon was pulling through the tract. We go down there and yup, it was pulling through. I was highly pissed off that day. And that's all I'll say about that.
Currently, we have a small hole in the tube (the portion on the outside of Em's belly near the G,J and balloon junction) and we will be going to see the surgeon on Thursday about that (we've just been taping it). She is seeing OT and PT biweekly on alternating weeks and will start weekly speech therapy in two weeks. Plus she has all of her clinic check-ups and early intervention appointments. Last week we had six appointments from Wednesday through Friday. Friday we were there from 8:30am to 4:30pm. So you can see it engulfs our lives sometimes. But whataya do? You do what you have to. But on the plus side... someone is turning 1 year old in a few weeks :) Finally we can throw a party and celebrate!
A few weeks after my last post I still hadn't heard from Surgery so I called my go-to gal, Rebecca with the Feeding Team and she got it done. We had less than a week from when we scheduled the surgery to the date of surgery. It was set for July 5th. Now, you all must understand that July 4th is kind of a big ordeal for my family. It is my Grandpa Nagele's birthday and we have always had a big party. My parents have been hosting it for years and this year they had it again. My father is one of ten children, and has two aunts; four cousins from one and seven cousins from the other. Well, all the cousins have kids my age and we are all having kids now... so it's a lot of people! I think my mom was anticipating 125ish total. We also have two meals and games. Well the party was planned for July 4th and Em's surgery the next morning. So we were busy before her surgery, which is how I like it. Not a lot of time to think about it.
I went to my parents place the morning of the party to make mac-n-cheese (and utilize my mom's kitchen :D) and try to help out as much as possible. A lot of my dad's family helped this year and came early, which was sooo nice! And this year it was a hot one. We spent the majority of the day in the house with Em. She got to visit with family, met some of our family for the first time, had one last swim and a quick photo shoot with an ear of corn and we eventually went home.
The next morning we got up early and went to Same Day Surgery. Her surgery started on time but went over a little bit which stressed me and Jake out. But no complications and we eventually went back to recovery. The nurse there asked us if we wanted to see it and I said no. Jake and I were starving, hadn't eaten anything substantial since the night before, and I pass out easy. So she called our nurse we would have upstairs in A4 and when she told her Emileigh's name she knew us. Haha! We had had her before and her mom and my mom were childhood friends. It was nice knowing someone would be there that knew her history. We eventually were transported and settled in our room. Jacob had to work the next day so he left late that night and my Aunt Mare stayed with me. My mom has scoliosis, among other ailments, and I have a hard time having her stay in the hospital in the uncomfortable chairs and horrible pull-out bed. She would stay, if I had let her.
For reference here are a few pictures to give you an idea of what I'm talking about in the upcoming paragraphs:
So, anyways, Em was just on IV fluids and pain meds for 24 hours. Changing her diapers became difficult and she wasn't doing so good. Her back arching came on full force, she was vomiting, screaming like I had never heard before, and inconsolable for a majority of the time. I really thought to myself "what have I done?" Everything was going so good and then I had to go and do this and make her miserable. At one point my sister showed up to visit and I about lost it. They were putting a tube down her nose and into her stomach to suck the fluid from her stomach in hopes she wouldn't vomit so bad. Ellen said she could just tell. Looking back I really don't know how I didn't spontaneously combust. We eventually went to radiology and they did a contrast study and decided to pull her tube out a little more. The balloon was causing her to vomit by blocking her intestines. That helped a bit but it eventually went back to how it was. It got bad enough that by day three the Medical Response Team had been called twice and the second time we were sent to the PICU.
We stayed in the PICU for three days. I actually liked the PICU. We had a hospital bed AND a recliner! We just couldn't eat back there but I will give up food in my room any day to have a bed OR recliner in my room. I felt at ease there and was able to start joking with the staff again. And for the second time since January we had a doctor who knew someone with a PMG child. In the PICU we had a overnight doctor who knows Robert Rummel-Hudson and asked me if I had read his book. I think she could tell by the look on my face at how shocked I was that she even knew what PMG was. We had a quick chat and she had to go but she eventually saw Em vomit and could not believe it. Finally a doc had seen it! I think her seeing it allowed us to stay a little longer.
We eventually were moved back to A4 once a room was open and I was adamant about having that hospital bed in my room. And by golly, we kept it. We rode on it to A4, signed a waiver, and wa-la! Mommy and Em got to continue sleeping at night in a bed for the rest of our stay. We continued trying to get her comfortable and stop the vomiting. We had another contrast study and they deflated the balloon a little and pulled it out again. I happened to run into our GI doc in the hallway and he said he hadn't had that happen before (having a tube pulled back twice in a week). But he reassured me that if the balloon was the problem that there were ways to fix that.
Her vomiting got slightly better each day and on day 11 we went home. Once we were home I did feel better that I would be able to shower and sleep more "normally" but coming home also stresses me out. Honestly, I don't remember much after we came home. It must have been pretty uneventful besides the regular stuff that comes with a tubie and the new stuff of stoma care. She did develop granulation tissue around her stoma and a script for steroid cream was sent to the pharmacy. So we started that 4 times a day for a few weeks. After that we didn't have any issues until the day before Jacob and I were planning on going on a long weekend to Lake Douglass near Sevierville, TN. I tried all freaking day to get someone to see her and got the run around with everyone. Eventually we had to take her to the ED. We got in around 5 or 5:30pm and they diagnosed her with a UTI and about 4 hours later we were home. Quickest ED visit EVER!
Jake and I went on our trip and Em did fine. Once we came home we had to start a second round of steroid cream on her stoma and she had developed thrush on her tongue. So I called our pediatrician and told them she does not take anything orally. They phoned something to the pharmacy and I go to pick it up and guess what?! It was an oral liquid (1 mL 4x a day)! Freaking awesome >:/
All while this was going on I was convinced her tube site looked weird. We took pictures of it to show some nurses and I talked to a few people and they said it seemed fine. Finally, I called and said for my sanity that they needed to look at her. We brought her in and the nurse practitioner within a minute said she was sending us to interventional radiology... meaning she thought the balloon was pulling through the tract. We go down there and yup, it was pulling through. I was highly pissed off that day. And that's all I'll say about that.
Currently, we have a small hole in the tube (the portion on the outside of Em's belly near the G,J and balloon junction) and we will be going to see the surgeon on Thursday about that (we've just been taping it). She is seeing OT and PT biweekly on alternating weeks and will start weekly speech therapy in two weeks. Plus she has all of her clinic check-ups and early intervention appointments. Last week we had six appointments from Wednesday through Friday. Friday we were there from 8:30am to 4:30pm. So you can see it engulfs our lives sometimes. But whataya do? You do what you have to. But on the plus side... someone is turning 1 year old in a few weeks :) Finally we can throw a party and celebrate!
Friday, June 8, 2012
No/Good News
Thus far, since we have been home it has been pretty positive around here. Emileigh is doing well. She gets a six hour break from the feeding pump each day and is really beefing up her giggle and laugh. She is showing more of her personality. Her G-tube surgery was postponed and then cancelled after our last hospital stay. We met last week with the Feeding Team and her GI doctor is putting his recommendation in for a GJ-tube. I agreed completely and feel her NJ feeding has been nothing but positive. I am excited and nervous about the surgery. It is weird how you want something to be done and over with but then at the same time you feel that having the surgery makes the diagnosis more real. I am normally more of a realist, where I try to think of all scenarios possible and try to be prepared for any outcome. But through this I have been more positive than normal. So when I have been thinking "oh, she will just need more therapy" or "she will develop seizures" (and the "typical" PMG stuff) and then we have to plan a surgery it hits you a little hard at times. The idea of a more permanent thing that represents this diagnosis is scary and upsetting. It's so hard to express in words all of the feelings and the roller-coaster that engulfs my brain. Sometimes I confuse myself as to how I began thinking about what I was at that time.
I am still waiting to hear from the scheduler about when her GJ-tube surgery will be. Meanwhile, I emailed Tubie Friends about our situation. See back in April when I scheduled her G-tube surgery for May I ordered her a Tubie Friend. They are Build-A-Bear animals that are specially made for children with feeding tubes and trachs. So Emileigh received a puppy with a G-tube and we were in the process of naming her when she was admitted. Then the surgery was postponed, then cancelled, then changed to a GJ-tube. So I emailed them again and asked if I could donate the puppy to another child and could purchase another animal for Em. They quickly replied that I should donate the puppy to a child life specialist at Children's. Then the specialist can show parents the puppy and show them where to apply for their own Tubie Friend! I am so excited! Then more people will hear about them and it will possible reach more children than if I had just donated it to another child. That makes me happy :D
But I wanted to give a quick update even though I felt there wasn't much going on around here. But it's like they say at the hospital... no news is good news!
I am still waiting to hear from the scheduler about when her GJ-tube surgery will be. Meanwhile, I emailed Tubie Friends about our situation. See back in April when I scheduled her G-tube surgery for May I ordered her a Tubie Friend. They are Build-A-Bear animals that are specially made for children with feeding tubes and trachs. So Emileigh received a puppy with a G-tube and we were in the process of naming her when she was admitted. Then the surgery was postponed, then cancelled, then changed to a GJ-tube. So I emailed them again and asked if I could donate the puppy to another child and could purchase another animal for Em. They quickly replied that I should donate the puppy to a child life specialist at Children's. Then the specialist can show parents the puppy and show them where to apply for their own Tubie Friend! I am so excited! Then more people will hear about them and it will possible reach more children than if I had just donated it to another child. That makes me happy :D
But I wanted to give a quick update even though I felt there wasn't much going on around here. But it's like they say at the hospital... no news is good news!
Wednesday, May 23, 2012
Fast Forward...
Due to a recent lengthy hospital stay I am going to hit the high points from where I left off in my last post to our current status.
So we had our first week long stay of the year the first week of January. Eleven days later we had our second. She was having breathing problems and at a check-up appointment (check-up because of her previous hospital stay) the doctor said it was up to me if she were to get admitted. I said we would stay, and the doctor later told me if it were her child she would have stayed as well. Funny how that can worry you and comfort you all at the same time. Essentially, nothing groundbreaking was found out in that stay. She always was stable even with her noisy breathing. She did have a sleep study and it showed mild apnea but nothing that required intervention at this time. So we went home after a week.
Eventually her breathing did get better. She still makes noises and the nurses always comment on it and we let them know it is her normal. She also continued with the NG tube feedings but still was having vomiting and gagging but I had honestly assumed that that was just how it was going to be.
February was fine. No hospital stays. Daddy's birthday. Seemed to be doing okay.
March was not the same. We had fought a GI bug with her for a while and finally it got to the point where she couldn't keep anything down. She was getting dehydrated. So I called every medical professional I had a number for to get someone to tell me to take her to the ED (what was once called the ER... I know... weird) so they would take us back to be seen right away (it is way easier that way). Eventually, I got someone to send the "orders" to the ED and they were waiting for us. They took us back right away and had a hard time getting an IV because she was so dehydrated. Eventually they admitted us. That first night was pure hell. The kind of hell that makes you want to scrape your face on the burning hot pavement on MLK during the summertime. She screamed, and gagged, and vomited, and pooped all night. I tried everything to get her to lay in her crib without having to hold her. I was exhausted. The nurse we had the next morning was so saddened by us that she asked the doctor to get someone to help us. They can write an order to have someone hold or take care of a child that has critical care issues. So she wrote the orders for fear of aspiration and I slept for a few hours. Meanwhile, the next day Emileigh was schedule to have a triple scope procedure that I was terrified we would have to postpone. Thankfully, it was not and they proceeded. She had a bronc scope by a pulmonologist and an upper GI and sigmoidoscopy by her GI doc. The bronc showed she has a floppy upper and lower airway (laryngomalacia and tracheomalacia). But nothing huge was found with GI (which I was hoping for). So we stayed a total of three days and went home.
Fast forward to April. Well, three weeks after her first GI bug she started with another. Hmmm... makes ya think maybe she has something more going on?...
Well we tried taking care of it at home. Pedialyte, tylenol, ect... I even took her to the ED and was sent home. After nearly a week of being at home with this I called and said she really needed to be seen and we were sent back to the ED. And, surprise, we were admitted. And we stayed for twenty three days. Holy shit... you want to talk about going insane. Stay in a hospital that long. All the nurses knew me and would visit me even when they weren't Emileigh's nurse. But seriously, I have never felt like I had a lapse in sanity until then. But during that time I also decided that if Emileigh ever gets healthy enough I want to go back to school to be an RN. Anyone who knows me understands how ridiculous that sounds but funny thing about having a sick kid and how it changes your interests. But anywhoo... Emileigh. She was in isolation the first week. But I'm not going to get into the sloppy poop details that we dealt with and discussed with the docs. But one big thing that happened at this stay was a Care Conference ( < insert heavenly music and clouds separating for the sun to shine through).
The Care Conference was a meeting between Jake and I and Emileigh's GI and neuro docs along with a GI fellow that was seeing her inpatient and a social worker and discharge nurse. I had written all the points I wanted discussed in my iPad and brought it with me. It went fairly well. Eventually I had to have Jake describe our home life to them. I was sick of discussing that with them and was fearful of what might come out of my mouth. So then we all discussed possible home nursing care. We also got the neuro doc on board with giving her some nighttime meds to help her (and me) sleep. We started with melatonin. One other topic of discussion was the lovely world of insurance and the barrage of BS that goes with being in the special needs world. In the end it felt good. And our GI doc always gives me props for everything we go through and do everyday. Sometimes that's all you need. And it's best to hear it from a doc.
The melatonin seemed to help a bit. But they also advanced her NG tube to a NJ and she did not like it. She constantly gagged and tried to bring it up. She would bring up bile or mucus that was in her belly and then she would have a hard time recovering afterwards. So the Friday before Mother's Day one doc asked me if I wanted to go home because her numbers looked good. I said no not until she was relieved from the gagging. So they called her neurologist and he added Clonazepam... amazing thing that drug is! So, then the next day (the day before Mother's Day) we went home.
It's always nice to be home (for the comfort) but it is so stressful as well. What if she turns blue from not breathing? Or brings up her tube? There are always tons of inconceivable possibilities of things that could happen and add that to a new regimen of meds, formula, sleep, ect... it gets stressful. So usually after we come home it is stress to the max for a week or so. And when we came home this time, I was accidentally over-medicating Emileigh. So lesson learned... I need someone to check me once we come home.
But the upside.
She now sleeps through the night, does not arch and scream (which she used to do anywhere from 15 to 30 times a day, sometimes more), she smiles and giggled the first time, and is gaining weight. Everyone is shocked at the difference. So she is doing better. She was supposed to have a G-tube surgery on the 23rd of May but that has been postponed and she will most likely get a GJ or J-tube. So I will feel better once that is resolved. We won't know until her check-up and we reassess. So at this point we have adjusted to our newest "normal" and onward we go.
So we had our first week long stay of the year the first week of January. Eleven days later we had our second. She was having breathing problems and at a check-up appointment (check-up because of her previous hospital stay) the doctor said it was up to me if she were to get admitted. I said we would stay, and the doctor later told me if it were her child she would have stayed as well. Funny how that can worry you and comfort you all at the same time. Essentially, nothing groundbreaking was found out in that stay. She always was stable even with her noisy breathing. She did have a sleep study and it showed mild apnea but nothing that required intervention at this time. So we went home after a week.
Eventually her breathing did get better. She still makes noises and the nurses always comment on it and we let them know it is her normal. She also continued with the NG tube feedings but still was having vomiting and gagging but I had honestly assumed that that was just how it was going to be.
February was fine. No hospital stays. Daddy's birthday. Seemed to be doing okay.
March was not the same. We had fought a GI bug with her for a while and finally it got to the point where she couldn't keep anything down. She was getting dehydrated. So I called every medical professional I had a number for to get someone to tell me to take her to the ED (what was once called the ER... I know... weird) so they would take us back to be seen right away (it is way easier that way). Eventually, I got someone to send the "orders" to the ED and they were waiting for us. They took us back right away and had a hard time getting an IV because she was so dehydrated. Eventually they admitted us. That first night was pure hell. The kind of hell that makes you want to scrape your face on the burning hot pavement on MLK during the summertime. She screamed, and gagged, and vomited, and pooped all night. I tried everything to get her to lay in her crib without having to hold her. I was exhausted. The nurse we had the next morning was so saddened by us that she asked the doctor to get someone to help us. They can write an order to have someone hold or take care of a child that has critical care issues. So she wrote the orders for fear of aspiration and I slept for a few hours. Meanwhile, the next day Emileigh was schedule to have a triple scope procedure that I was terrified we would have to postpone. Thankfully, it was not and they proceeded. She had a bronc scope by a pulmonologist and an upper GI and sigmoidoscopy by her GI doc. The bronc showed she has a floppy upper and lower airway (laryngomalacia and tracheomalacia). But nothing huge was found with GI (which I was hoping for). So we stayed a total of three days and went home.
Fast forward to April. Well, three weeks after her first GI bug she started with another. Hmmm... makes ya think maybe she has something more going on?...
Well we tried taking care of it at home. Pedialyte, tylenol, ect... I even took her to the ED and was sent home. After nearly a week of being at home with this I called and said she really needed to be seen and we were sent back to the ED. And, surprise, we were admitted. And we stayed for twenty three days. Holy shit... you want to talk about going insane. Stay in a hospital that long. All the nurses knew me and would visit me even when they weren't Emileigh's nurse. But seriously, I have never felt like I had a lapse in sanity until then. But during that time I also decided that if Emileigh ever gets healthy enough I want to go back to school to be an RN. Anyone who knows me understands how ridiculous that sounds but funny thing about having a sick kid and how it changes your interests. But anywhoo... Emileigh. She was in isolation the first week. But I'm not going to get into the sloppy poop details that we dealt with and discussed with the docs. But one big thing that happened at this stay was a Care Conference ( < insert heavenly music and clouds separating for the sun to shine through).
The Care Conference was a meeting between Jake and I and Emileigh's GI and neuro docs along with a GI fellow that was seeing her inpatient and a social worker and discharge nurse. I had written all the points I wanted discussed in my iPad and brought it with me. It went fairly well. Eventually I had to have Jake describe our home life to them. I was sick of discussing that with them and was fearful of what might come out of my mouth. So then we all discussed possible home nursing care. We also got the neuro doc on board with giving her some nighttime meds to help her (and me) sleep. We started with melatonin. One other topic of discussion was the lovely world of insurance and the barrage of BS that goes with being in the special needs world. In the end it felt good. And our GI doc always gives me props for everything we go through and do everyday. Sometimes that's all you need. And it's best to hear it from a doc.
The melatonin seemed to help a bit. But they also advanced her NG tube to a NJ and she did not like it. She constantly gagged and tried to bring it up. She would bring up bile or mucus that was in her belly and then she would have a hard time recovering afterwards. So the Friday before Mother's Day one doc asked me if I wanted to go home because her numbers looked good. I said no not until she was relieved from the gagging. So they called her neurologist and he added Clonazepam... amazing thing that drug is! So, then the next day (the day before Mother's Day) we went home.
It's always nice to be home (for the comfort) but it is so stressful as well. What if she turns blue from not breathing? Or brings up her tube? There are always tons of inconceivable possibilities of things that could happen and add that to a new regimen of meds, formula, sleep, ect... it gets stressful. So usually after we come home it is stress to the max for a week or so. And when we came home this time, I was accidentally over-medicating Emileigh. So lesson learned... I need someone to check me once we come home.
But the upside.
She now sleeps through the night, does not arch and scream (which she used to do anywhere from 15 to 30 times a day, sometimes more), she smiles and giggled the first time, and is gaining weight. Everyone is shocked at the difference. So she is doing better. She was supposed to have a G-tube surgery on the 23rd of May but that has been postponed and she will most likely get a GJ or J-tube. So I will feel better once that is resolved. We won't know until her check-up and we reassess. So at this point we have adjusted to our newest "normal" and onward we go.
Sunday, April 1, 2012
Wrap up of '11 and first stay of '12
I've been meaning to get up to speed but it's almost impossible to "plan" things with our situation. But back to where I was in the last post.
So we came home and Emileigh was doing pretty well. We continued to go to Children's for outpatient clinic appointments and started Help Me Grow at home. Help Me Grow (HMG) is Ohio’s birth to 3 system that provides state and federal funds to county Family and Children First Councils to be used in conjunction with state, local and other federal funds to implement and maintain a coordinated, community-based infrastructure that promotes trans-disciplinary, family-centered services for expectant parents, newborns, infants and toddlers and their families. The Ohio Department of Health, Bureau of Early Intervention Services (BEIS) is the lead agency administering HMG program in Ohio ( http://www.ohiohelpmegrow.org/aboutus/AboutHelpMeGrow.aspx ). She seemed to be doing well and we were beginning to get in the groove of what our "normal" was going to be.
She was pretty happy. She smiled a lot in her sleep. Her cousin, Sylvia, was born 18 days after her. Doing pretty good... but she occasionally had some exaggerated arching where her head nearly touches her butt (about an inch separates them). That didn't seem too bad until Thanksgiving. Thanksgiving it started to go downhill.
We attempted to take her out to my dad's family Thanksgiving. The Nagele Thanksgiving is the Sunday before and is a very large family gathering. He is one of ten. So there was a lot of noise and such at my grandparent's house. She cried quite a bit and wasn't eating well. Almost refused. I just figured that it was too hard for her to eat with all that noise. Then later that week we had a few more gatherings and she screamed and arched pretty bad. I called Children's and they started her on acid reducers. It just got worse from there.
I continued to call Children's and they switched her acid reducer and said she was uncomfortable because of the reflux. Also at this time I went back to work full-time (talk about stress). Christmas was very difficult. She screamed and arched so bad on Christmas Eve at my parent's house that finally my aunt asked if she could talk to the clinic we were dealing with at Children's (she works there, just in a different clinic). I agreed. Christmas Day Emileigh was just as bad. She would barely eat and when she would suck on the bottle she would let go and wince and scream then arch. I had no clue what to do.
I was convinced something was physically hurting her. I continued calling the nurses and then my mom, aunt and I decided we needed to video tape her. So I taped her several times and put them on you tube. We sent the link to the nurses at the clinic and BOOM... we had an appointment. Yet again I had no clue what was going to come.
We had an appointment January 5th and were admitted several hours later. At that time I was force feeding her with a bottle. She averaged about 14 ounces a day and was supposed to have at least 24 ounces. She was so much more happy and content when she wasn't eating or had an empty stomach. So once we were in our room they put an NG tube down her nose and into her stomach. She screamed and gagged all night to the point that she was hoarse and lost her voice. I let her sleep on my chest once she gave in. The next morning was a Friday so that is really the last day of the week that they could do any tests. She had a swallow study that was mostly normal (no big issues), lots of blood work, they scheduled an MRI and started tube feeding her.
We waited through the weekend. Jacob had to go back to work on Monday and I stayed. Then on Monday started a lot of tests and such that I am really not going to get into because we never got anything but normal results and honestly I don't remember everything exactly. Until you stay in a hospital like that you won't understand. You don't sleep in there. You have constant traffic and noise plus you have the baby. It always seemed like as soon as she passed out they needed to get some blood or feed her or give her meds. But after all of that I was very happy to be there. If anything were to happen someone would be able to help me and I really, really thought we were going to get some answers.
As for her feeding: the first day they wanted to gravity feed her. It's where you have a large syringe and hook it into her tube and gravity feeds it to her (rather quickly). She began vomiting. Not spitting up. Vomiting. It was forceful. That had never happened before. They also were trying to feed her 4 ounces every 3 hours. It was too much. Finally I told them enough and said to do 3 ounces over and hour every 3 hours (got that?). It was a little better that way. From there we worked to figure out what was causing her to not want to eat.
Like I said before, all the tests came back normal. MRI was unchanged from when we were in the NICU. So a week after we were admitted we left with no reason other than her brain disorder was causing her to not be able to coordinate her sucking, swallowing and breathing when she ate. The only thing we were still waiting on was the genetic test called GPR 56 gene sequencing test. GPRPMG. Our neurologist wouldn't say if he thought our case was genetic but he gave me the feeling that he thought it was genetic (possibly due to how much of her brain was affected). So we went home January 13th with the NG tube and a pump.
That first night after everyone left we went to hook her up and it didn't go so smooth. I had a mild meltdown and eventually we got it working. Since then I have been sleeping on the couch. There is a permanent crater in the couch where I sit and sleep. Emileigh sleeps in a cradle thing that is up off the ground and it has a raised back so she doesn't lay flat. We actually had it before she was tube fed. I really like it. So she is next to me and the IV pole with the pump out in the living room. We kept the routine of feeding her every 3 hours for the first few weeks. I wasn't sleeping at all. And before I could ask the dietitian to figure something else out we were admitted again. Eleven days after we got home.
So we came home and Emileigh was doing pretty well. We continued to go to Children's for outpatient clinic appointments and started Help Me Grow at home. Help Me Grow (HMG) is Ohio’s birth to 3 system that provides state and federal funds to county Family and Children First Councils to be used in conjunction with state, local and other federal funds to implement and maintain a coordinated, community-based infrastructure that promotes trans-disciplinary, family-centered services for expectant parents, newborns, infants and toddlers and their families. The Ohio Department of Health, Bureau of Early Intervention Services (BEIS) is the lead agency administering HMG program in Ohio ( http://www.ohiohelpmegrow.org/aboutus/AboutHelpMeGrow.aspx ). She seemed to be doing well and we were beginning to get in the groove of what our "normal" was going to be.
She was pretty happy. She smiled a lot in her sleep. Her cousin, Sylvia, was born 18 days after her. Doing pretty good... but she occasionally had some exaggerated arching where her head nearly touches her butt (about an inch separates them). That didn't seem too bad until Thanksgiving. Thanksgiving it started to go downhill.
We attempted to take her out to my dad's family Thanksgiving. The Nagele Thanksgiving is the Sunday before and is a very large family gathering. He is one of ten. So there was a lot of noise and such at my grandparent's house. She cried quite a bit and wasn't eating well. Almost refused. I just figured that it was too hard for her to eat with all that noise. Then later that week we had a few more gatherings and she screamed and arched pretty bad. I called Children's and they started her on acid reducers. It just got worse from there.
I continued to call Children's and they switched her acid reducer and said she was uncomfortable because of the reflux. Also at this time I went back to work full-time (talk about stress). Christmas was very difficult. She screamed and arched so bad on Christmas Eve at my parent's house that finally my aunt asked if she could talk to the clinic we were dealing with at Children's (she works there, just in a different clinic). I agreed. Christmas Day Emileigh was just as bad. She would barely eat and when she would suck on the bottle she would let go and wince and scream then arch. I had no clue what to do.
I was convinced something was physically hurting her. I continued calling the nurses and then my mom, aunt and I decided we needed to video tape her. So I taped her several times and put them on you tube. We sent the link to the nurses at the clinic and BOOM... we had an appointment. Yet again I had no clue what was going to come.
We had an appointment January 5th and were admitted several hours later. At that time I was force feeding her with a bottle. She averaged about 14 ounces a day and was supposed to have at least 24 ounces. She was so much more happy and content when she wasn't eating or had an empty stomach. So once we were in our room they put an NG tube down her nose and into her stomach. She screamed and gagged all night to the point that she was hoarse and lost her voice. I let her sleep on my chest once she gave in. The next morning was a Friday so that is really the last day of the week that they could do any tests. She had a swallow study that was mostly normal (no big issues), lots of blood work, they scheduled an MRI and started tube feeding her.
We waited through the weekend. Jacob had to go back to work on Monday and I stayed. Then on Monday started a lot of tests and such that I am really not going to get into because we never got anything but normal results and honestly I don't remember everything exactly. Until you stay in a hospital like that you won't understand. You don't sleep in there. You have constant traffic and noise plus you have the baby. It always seemed like as soon as she passed out they needed to get some blood or feed her or give her meds. But after all of that I was very happy to be there. If anything were to happen someone would be able to help me and I really, really thought we were going to get some answers.
As for her feeding: the first day they wanted to gravity feed her. It's where you have a large syringe and hook it into her tube and gravity feeds it to her (rather quickly). She began vomiting. Not spitting up. Vomiting. It was forceful. That had never happened before. They also were trying to feed her 4 ounces every 3 hours. It was too much. Finally I told them enough and said to do 3 ounces over and hour every 3 hours (got that?). It was a little better that way. From there we worked to figure out what was causing her to not want to eat.
Like I said before, all the tests came back normal. MRI was unchanged from when we were in the NICU. So a week after we were admitted we left with no reason other than her brain disorder was causing her to not be able to coordinate her sucking, swallowing and breathing when she ate. The only thing we were still waiting on was the genetic test called GPR 56 gene sequencing test. GPRPMG. Our neurologist wouldn't say if he thought our case was genetic but he gave me the feeling that he thought it was genetic (possibly due to how much of her brain was affected). So we went home January 13th with the NG tube and a pump.
That first night after everyone left we went to hook her up and it didn't go so smooth. I had a mild meltdown and eventually we got it working. Since then I have been sleeping on the couch. There is a permanent crater in the couch where I sit and sleep. Emileigh sleeps in a cradle thing that is up off the ground and it has a raised back so she doesn't lay flat. We actually had it before she was tube fed. I really like it. So she is next to me and the IV pole with the pump out in the living room. We kept the routine of feeding her every 3 hours for the first few weeks. I wasn't sleeping at all. And before I could ask the dietitian to figure something else out we were admitted again. Eleven days after we got home.
Wednesday, March 14, 2012
Well, where to start...
It's nearly 2 am and I am in the middle of my night shift with Emileigh. So, I guess I will start from the beginning.
My pregnancy was perfect. I battled morning sickness for the first half of my pregnancy and honestly that was the worst part. Other than that I did get a bad cough when I was 10 weeks pregnant and was put on steroids. That was pretty miserable but overall the 40 weeks was what I had expected. Easy peasy!
Emileigh was due on September 24th. That day passed. My next appointment was on September 26th. I was really hoping they would induce me because that was our second wedding anniversary... aaand if labor went into the next day that would be fine too because that was my 26th birthday! I really wanted my baby on my birthday! But anywhoo... So on September 29th I went into the doctor's and they decided to induce. I called my husband and my mom and they passed the word along. A few hours later they were there and the pitocin began. Ouchie! Wasn't long after I asked for an epidural.
I progressed quickly and around 8pm (can't quite remember I was really drugged) the doc came in and kept trying to turn the baby so I could push. Welp, that didn't work. And I was having so much pain (with the epidural) on my tailbone that I asked for more meds. I'm pretty sure I told my husband at some point that he better watch out because I was convinced my tailbone was going to pop right out of my butt and impale him. So, then the doc sat up by me and said "well, there's only one way this baby is coming out." I said "c-section?" She said "yep." I'm a pretty laid back individual so I said "okay." She couldn't believe how easy that was. I just figured that's how it was supposed to be. So I was prepped for surgery, Jacob went out to update our families in the waiting room and then met me back in the OR.
Now we didn't know what we were having so the doctor had decided she would tell Jacob when to get the camera ready and then she would hold the baby up and Jacob could tell me what it was. I could feel pressure and hear everything but I was more concerned about vomiting because I was so nauseous from being on my back. Still, though, pretty easy peasy. Then the doc asked if Dad was ready and Jacob stood up and watched. I could feel when the baby was out but didn't hear any crying. And Jacob hadn't told me what it was. The baby was purple from the cord being around it's neck. So Jacob was looking but thinking "oh crap, it's purple!" Then he said "uh, it's a girl!" Emileigh cried and they took her behind me and Jacob followed. It seemed like forever before I got to see her. Maybe 15 minutes or so. Then Jacob walked her over.
She was so cute. She looked like Jacob's family. She looked just like him. She had her Uncle Sammy's lips. Once I was moved back onto my bed they handed her to me and we headed back to our room.
The first indication of something not being right was that ride back to our room. She was doing this repetitive eye movement from right to left. I figured maybe it was because she was out in the bright lights of the hallway. No biggie, but odd.
Once we were back in our room everyone came in. I remember holding her and she was arching and screaming so bad that I thought to myself "what did I do?" And "can I do this?" But again I had heard so many moms tell me that they had the same feeling. So, again, no biggie.
Later we settled in once everyone left and she was taken to the nursery. There they noticed some weird body movements and had someone from the NICU come up and evaluate her. They all came back in our room and reassured us she just had an exaggerated startle reflex. Good. The next day was just pumping, diapers and trying to feed her. She was not interested at all. The nurses weren't too worried. Later that night they asked if we wanted a break and we sent her to the nursery again. Little did we know that was the last time she would be in our room with us.
They called us less than 24 hours after she had been born and informed us that they were sending her to the NICU. We went down there and she had a lamp on her and IV. She was sleeping good but it was just not what I wanted to see. But I was positive that she was just having a rough start. Rounds were the next morning at 8. So we went back up to our room and slept a little and came back down the following morning.
The next morning we were informed she had a partially collapsed lung due to fluid from the c-section. But they weren't too concerned about that. The exaggerated startle reflex and some seizure-like movements were their main concerns. They ordered a CT scan and spinal tap. The spinal tap showed a larger than normal amount of white blood cells in the fluid. They sent some cultures out to be tested. The CT scan showed some grey areas in her brain and they said within her first year we would need to have an MRI at Children's just to follow up. Again, they were not concerned about that either.
The next day someone came over from Children's to perform and EEG to look for seizures. She was hooked up for an hour and later that night we were informed she was being transported by ambulance to Children's. We rushed downstairs to see her before she left and I had to rush to be discharged. My mom, in-laws and younger brother-in-law were all in our room. We all hurried up and followed shortly.
My mother's sister works at Children's and met us there. Jacob and I were in her room as soon as we got there. We had to go over family medical history, insurance, and a list of people that were allowed to visit her unaccompanied by us. Only 4 people are allowed in her room at a time, including Jacob and I. So eventually I became sick of answering questions and made my way out so others could go back and see her.
Honestly the days ran together while we were in there. She fussed more at night, wouldn't eat, was hooked up to all kids of crap (that I can still hear beeping) and we had constant traffic in and out of our room. She had a 24 hour EEG (which later showed no seizures) but was on anti-seizure meds as a precaution. Jacob eventually got her to take half an ounce of formula. So I tried breastfeeding and she was a pro the first two times, then she couldn't get it together. That same day they decided to do and unsedated MRI. Later that night it would all come together.
The neurologists came in after we came back from eating and my mom was in the room with us. They told us she had a condition called Polymicrogyria. Essentially she had too many folds in her brain. At this point in the explanation I knew this was bad and I felt the tears coming. They continued and said she will be disabled and may never walk or talk. Bam. There it is. I started crying uncontrollably (and I am not a crier and usually can control myself). My mom asked some questions, not sure what, but they said we would only find out more as she got older and as she reaches (or does not reach) her milestones. "Only time will tell." I fucking hate that phrase. I can still hear it coming out of his mouth.
So that was that. My mom left so we could be alone and we cried some more. I remember saying that I would do it all again if I had to and that we are lucky. So many people can't have babies and we are lucky we could have our own. But at the same time you feel so awful for creating this child who is going to struggle her whole life. Then you feel bad for feeling awful because she is the one who should feel bad and be pissed at the world. Then you go numb.
We were in the hospital a few more days waiting for the cultures from her spinal tap to come back and trying to get her to eat good. When she was a week old we came home. I remember coming home and I really thought it was just going to be OT, PT, speech therapy and learning difficulties all down the road. I had no clue all the other crap that was about to come our way the next few months.
And I'll have to save that for another post.
My pregnancy was perfect. I battled morning sickness for the first half of my pregnancy and honestly that was the worst part. Other than that I did get a bad cough when I was 10 weeks pregnant and was put on steroids. That was pretty miserable but overall the 40 weeks was what I had expected. Easy peasy!
Emileigh was due on September 24th. That day passed. My next appointment was on September 26th. I was really hoping they would induce me because that was our second wedding anniversary... aaand if labor went into the next day that would be fine too because that was my 26th birthday! I really wanted my baby on my birthday! But anywhoo... So on September 29th I went into the doctor's and they decided to induce. I called my husband and my mom and they passed the word along. A few hours later they were there and the pitocin began. Ouchie! Wasn't long after I asked for an epidural.
I progressed quickly and around 8pm (can't quite remember I was really drugged) the doc came in and kept trying to turn the baby so I could push. Welp, that didn't work. And I was having so much pain (with the epidural) on my tailbone that I asked for more meds. I'm pretty sure I told my husband at some point that he better watch out because I was convinced my tailbone was going to pop right out of my butt and impale him. So, then the doc sat up by me and said "well, there's only one way this baby is coming out." I said "c-section?" She said "yep." I'm a pretty laid back individual so I said "okay." She couldn't believe how easy that was. I just figured that's how it was supposed to be. So I was prepped for surgery, Jacob went out to update our families in the waiting room and then met me back in the OR.
Now we didn't know what we were having so the doctor had decided she would tell Jacob when to get the camera ready and then she would hold the baby up and Jacob could tell me what it was. I could feel pressure and hear everything but I was more concerned about vomiting because I was so nauseous from being on my back. Still, though, pretty easy peasy. Then the doc asked if Dad was ready and Jacob stood up and watched. I could feel when the baby was out but didn't hear any crying. And Jacob hadn't told me what it was. The baby was purple from the cord being around it's neck. So Jacob was looking but thinking "oh crap, it's purple!" Then he said "uh, it's a girl!" Emileigh cried and they took her behind me and Jacob followed. It seemed like forever before I got to see her. Maybe 15 minutes or so. Then Jacob walked her over.
She was so cute. She looked like Jacob's family. She looked just like him. She had her Uncle Sammy's lips. Once I was moved back onto my bed they handed her to me and we headed back to our room.
The first indication of something not being right was that ride back to our room. She was doing this repetitive eye movement from right to left. I figured maybe it was because she was out in the bright lights of the hallway. No biggie, but odd.
Once we were back in our room everyone came in. I remember holding her and she was arching and screaming so bad that I thought to myself "what did I do?" And "can I do this?" But again I had heard so many moms tell me that they had the same feeling. So, again, no biggie.
Later we settled in once everyone left and she was taken to the nursery. There they noticed some weird body movements and had someone from the NICU come up and evaluate her. They all came back in our room and reassured us she just had an exaggerated startle reflex. Good. The next day was just pumping, diapers and trying to feed her. She was not interested at all. The nurses weren't too worried. Later that night they asked if we wanted a break and we sent her to the nursery again. Little did we know that was the last time she would be in our room with us.
They called us less than 24 hours after she had been born and informed us that they were sending her to the NICU. We went down there and she had a lamp on her and IV. She was sleeping good but it was just not what I wanted to see. But I was positive that she was just having a rough start. Rounds were the next morning at 8. So we went back up to our room and slept a little and came back down the following morning.
The next morning we were informed she had a partially collapsed lung due to fluid from the c-section. But they weren't too concerned about that. The exaggerated startle reflex and some seizure-like movements were their main concerns. They ordered a CT scan and spinal tap. The spinal tap showed a larger than normal amount of white blood cells in the fluid. They sent some cultures out to be tested. The CT scan showed some grey areas in her brain and they said within her first year we would need to have an MRI at Children's just to follow up. Again, they were not concerned about that either.
The next day someone came over from Children's to perform and EEG to look for seizures. She was hooked up for an hour and later that night we were informed she was being transported by ambulance to Children's. We rushed downstairs to see her before she left and I had to rush to be discharged. My mom, in-laws and younger brother-in-law were all in our room. We all hurried up and followed shortly.
My mother's sister works at Children's and met us there. Jacob and I were in her room as soon as we got there. We had to go over family medical history, insurance, and a list of people that were allowed to visit her unaccompanied by us. Only 4 people are allowed in her room at a time, including Jacob and I. So eventually I became sick of answering questions and made my way out so others could go back and see her.
Honestly the days ran together while we were in there. She fussed more at night, wouldn't eat, was hooked up to all kids of crap (that I can still hear beeping) and we had constant traffic in and out of our room. She had a 24 hour EEG (which later showed no seizures) but was on anti-seizure meds as a precaution. Jacob eventually got her to take half an ounce of formula. So I tried breastfeeding and she was a pro the first two times, then she couldn't get it together. That same day they decided to do and unsedated MRI. Later that night it would all come together.
The neurologists came in after we came back from eating and my mom was in the room with us. They told us she had a condition called Polymicrogyria. Essentially she had too many folds in her brain. At this point in the explanation I knew this was bad and I felt the tears coming. They continued and said she will be disabled and may never walk or talk. Bam. There it is. I started crying uncontrollably (and I am not a crier and usually can control myself). My mom asked some questions, not sure what, but they said we would only find out more as she got older and as she reaches (or does not reach) her milestones. "Only time will tell." I fucking hate that phrase. I can still hear it coming out of his mouth.
So that was that. My mom left so we could be alone and we cried some more. I remember saying that I would do it all again if I had to and that we are lucky. So many people can't have babies and we are lucky we could have our own. But at the same time you feel so awful for creating this child who is going to struggle her whole life. Then you feel bad for feeling awful because she is the one who should feel bad and be pissed at the world. Then you go numb.
We were in the hospital a few more days waiting for the cultures from her spinal tap to come back and trying to get her to eat good. When she was a week old we came home. I remember coming home and I really thought it was just going to be OT, PT, speech therapy and learning difficulties all down the road. I had no clue all the other crap that was about to come our way the next few months.
And I'll have to save that for another post.
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