Thursday: Lazy day at home. Jillian and I hung out at home and she slept off and on and wanted to be held. I got some cleaning done around the house, in trying to get ready for her birthday party on the 14th. We did nebs every 4 hours.
In the morning I gave her the acid reflux meds. For one of the first times ever she did not want pink meds, which she normally loves. I ended up putting 1/2 of it in her g port because she did not want to finish it. Shortly after it was all in her body she started to reflux. It is normal for her to reflux her med. What is not normal was what happened for the next half hour. She coughed, choked and projectile vomited for over a half hour. I have not been that scared in a long time. A little over 2 weeks ago she started vomiting stomach contents again. It has become more and more uncontrollable and in the past week she has not even been able to keep her acid reflux meds in her tummy. She has not had a bottle in over 2 weeks. She just cant handle it.
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| Sophia makes a good neb partner! |
Friday: Doctor day! Brent and I gave her meds in the morning and 10min later she was puking all over our bed. I recorded it to show to the doctors. It is such a helpless feeling to watch her puke everywhere and there is nothing you can do.l It is even harder when you know that puking is causing pneumonia. We are not talking about a little spit up here. We are talking about ounces forcefully coming up. Her screaming in between puking and coughing. She looks scared and in pain. Once there is nothing left to come up she continues to cough and dry heave and gag. Once it starts there is not a great way to stop it.
We started the day by seeing the nurse practitioner. My mom came and joined us. She listened to her lungs and said the one lung was sounding a little better then the ER report said (the ER dr had told Dan and I that they both sounded good....) and that the other lung did not sound any better then it had on Wednesday. She said we needed to go see Pulmonology at Children's and they wanted them to see her ASAP so they were going to see how fast they could get us in. We talked about getting more ned meds. Prescriptions can be such a pain sometimes. I then asked her about what the nurses were talking about in the Children's ER the previous Friday when they had a hard time cathing her. She took a look and said that yes the skin over her urethra was almost fused together. She sent in a script for some Estrogen cream. She also said that her yeast infection in her diaper area is back. We are just constantly fighting that. I think we are on our 2nd or 3rd tube of cream for that.
Then we had an appointment with GI at Children's. First one of Jillian's favorite people at Children's came in first,our awesome dietion! She said that Jillian gained more weight then wanted and she was not sure why. We can't have her on less formula a day then she is on now because then we run the risk of her being malnourished. She said she would go talk to the doctor and they would come up with a plan. The one of our other favorite people came in, the nurse. She asked us a few questions and then headed out. Next the doctor came in. She said that they had talked and they wanted to start her on something called Complete because her one test came back that she had dumping syndrome and a recent paper was put out by the Children's hospital in Cincinnati saying that Complete is best for kids with dumping. Complete needs to go into the g port. At that point I stopped the doctor and told her g was not an option after how life has been at our house recently. I showed her the video and she got what I was saying. A child who has nothing go into their stomach each day other then acid reflux meds should not vomit, much less vomit for a 1/2 hour at a time. The vomiting should not cause pneumonia twice in 6 weeks. Once the doctor watched the video she got what I was saying and agreed that nothing could go into the g port other then meds that have to be digested in the stomach to work. She said that even though that one test came back showing dumping that she obviously has gastroperisis and we need to treat her for that. I agreed. She then did her exam and asked when the last time she had pneumonia was and I told her about Jillian turning blue on Wednesday. We then came up with a plan:
1. Each night Jillian's g port is now hooked up to drain all night. We are hooking a catheter bag up to her g port and everything that her body makes during the night drains into the bag. Jillian is on high doses of meds so that her tummy does not make a lot of acid however it will always make some acid and gastric juices and Jillian has progressed to the point that she can not handle her own gastric juices at night without choking on them refluxing. In the morning we disconnect the bag and measure everything that drains during the night. If it is more then 100ml (4 ounces) we have to call and they will tell us how much Pedialite to add to bag for the day to help make up for the lost fluid. So far is has been around 20ml of drainage, which is what we were expecting.
2. Jillian has been refereed to see a gastric motility specialist. We are very fortunate because there are not a lot of those and we are fortunate enough to have 5 gastric motility specialists in Milwaukee. Many families have to fly their children out of state to see a gastric motility specialist. We are being refereed to the head gastric motility specialist. I was able to get an appointment for January 6th.
3. They are talking about the possibility of gastric motlity testing. They did tell us however that because Children's is one of the few centers in the country that does gastric motility testing that there will be a several month wait. Once again we are very fortunate to have Children's so close because many families have to fly out of state to have this testing done.
4. We are going to keep her formula the same for now and see what her weight does. This is Jillian and her weight gain has always been unpredictable so we will see what the next month brings and then we will adjust from there. I have to bring her up the week of Christmas to get her weighted again. Some moths she gains too much for the amount of calories she takes in and other months she does not gain what she should with the amount of calories she takes it. She is very unpredictable with weight gain even though she gets an exact amount of food every day.
5. We are starting Jillian on Erythromycin continually. It is an antibiotic that is used for gastric motility patients for it's side effects. Most people get very bad diarrhea from it but in low doses for kiddos like Jillian it makes their system work more regularly. This is something we did not want to do, however she has gotten to the point where we have to do something. She is not pooping well except when she is on antibiotics. Her stomach does not seam to be moving much of anything and we are having a lot of vomiting. We have hit the point where we have to try it. We will see how it works. We dont take the choice to start this lightly, but having her on a continual low dose of antibiotics is better that her having large shots of antibiotics in her legs each time she get pneumonia.
6. The nutritionist is going to talk to someone in the GI department that is in charge of helping with coverage of supplies. She is going to see if there is any program that would help with getting Jillian's formula covered. Our insurance has a small list of conditions that they will pay for medical formula for. Jillian does not have any of them, thankfully because most are fatal, however Jillian's food is around $15 a day at this point and the price will just continue to rise. Not super hopeful but we will see.
Overall GI went really well. We were there for around 2 hours. We are normally there around that amount of time. There are so many people in and out of the room doing things and talking to us that it does take a long time. Each of those people love Jillian so much that it is a comforting place to be most months.
We also got a call back from her pediatrician's office. They were able to land us an appointment on Monday at 2:30 with pulmonology! They wanted to make sure she gets listened to now. Especially since we have gone though almost 120 vile of neb meds since August and I just picked up the next box this week.
In the evening I went and picked up Jillian's meds. Her med to help the skin separate by the urethra was $60, I about had a cow until I found out that before insurance it is $200. She is one pricey little girl!
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| Uncle Dan's Christmas gift to Jillian. A shirt that says "Size Matters Not" with some of the coolest creatures from out of this world! |
Saturday: She was super fussy! She did not really want anything or to do much of anything. When she got up she did not want her meds in her J port, she did not want to get undressed, she did not want to get dressed, she did not want her Farrell bag taken off of her g port, she just was not having all of the normal morning stuff. She cried for over 3 hours in the evening. It took her until after 11pm to fall asleep. She would just about be out and then there would be the slightest noise and she would wake up crying. The trick that finally got her to fall asleep... me laying down next to her bed and we watched the Cosby Show. The hard part for me was the episode was funny but if I laughed she would wake up.
Sunday: It was snowing hard in the morning on our way into Kenosha. We dropped Brent off at Church and Jillian and I headed to my parent's house. We did not want her exposed to extra germs. We are trying so hard to keep her healthy already and winter has not officially started yet. She hung out at their house most of the day. After Church Brent went to an Aurora Quick Care because he has not felt good for a week and his nose junk turned green over the weekend. He has a sinus infection and his ear drums are red. Mom and I went and picked up food for next weekend and got Brent's antibiotic. Then we made the drive home in the snow. Instead of 55 we went 35 all the way. The roads were kinda yucky but we made it home safe.
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| Early morning neb by the tree |
This week has been a little emotionally exhausting for me. I guess I would not be human if it was not. I mean my kid turned blue twice, has pneumonia and her GI track is getting worse. Strangely the GI part is the hardest for me. Yes, her turning blue was scary, but Dan and I were able to handle it. Yes that ER dr made me mad, but middle of no where hospitals are not known to be the best and I guess I can't expect Jillian's level of care there. Yes, it is frustrating that Jillian has pneumonia again but I said two weeks ago that it was coming. I knew when the vomiting started at that intensity again that we were headed down the same path. I called every doctor that I could on Jillian's case to try to stop it but no one could. But for me the fact that we are having to go the next level of care for Jillian's GI problems just makes it all real. I know I live this day in and day out but for us it is life. I sat and watched a 3 month old take a bottle this weekend and all I could think about was that Jillian was that age when she got her first tube and by 4months she went to just water by mouth. I knew that some of these things might happen when we went to GI on Friday. I knew something needed to be done. We could not keep going like this, but admitting that you have to go to the next level of care is humbling. I am grateful though that we have this option for care. As I looked though the World Vision Christmas Catalog this week all I could do was cry. Partially because I feel so passionate for some of those causes (the only time I ever got sent to the dean's office in high school was because a girl and I got into a fight over the existence of the sex trade, interesting story...) but also because as I looked at the needs in other countries all I could think about was how if we lived in MOST other countries in this word Jillian would be dead. She would have starved to death because she could not get the nutrients she needed or aspirated on reflux and died. That is hard to think about. My heart longs for the moms in other countries that are not able to save their child like I was able to with Jillian. I can only imagine the heart break. It's not fair. That simple. Not fair. A part of me was mad that I was able to get Jillian the help that she needs but they can't. The "why me" thought came to mind. Why am I fortune enough? And then my heart went to praise. I'm fortunate enough because God blessed me in that way. I don't know why, but I know who did the blessing, and it is my job/right/privilege/honor to praise Him. So while I might me exhausted after this week. While the thought that tomorrow we add another specialist to the circle is exhausting, we are blessed to have that option!
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| The dump truck makes haling her bad around easier :) |
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