Brown and Pink Polka Dots : Week in the hospital

This hospital admission was one of the scarier ones for Brent and I... it all started last Sunday.

Last Sunday morning we went to church like any other Sunday. Brent had to be there early to do lights so I brought the girls to the second service. After church we grabbed lunch and then the 4 of us headed to Target. Where are the 0-3mo tights ended up from Jilli is beyond me and Jilli has grown out of her tights from last year and the weather is getting cooler so we needed to shop for tights and a few odds and ends. We got to the toy section and Lydia spit up a little. That happens sometimes, no big deal. Then she started vomiting blood. It was a mix of fresh blood, old blood and stomach bile. Brent and I are use to puke. Honestly it stopped bothering us a long time ago and is just a normal part of our lives. The girls also both have specks of old blood come out of their g ports from time to time and that does not freak us out either, however we had never seen anything like this come out of either of our kids before. Target does not have good cell phone service so I went to the front to call Children's to have them page the oncall GI doctor to see what they wanted us to do. While I waited for the call back Brent checked out with the one thing we had found from our list and the two of us talked and decided it didn't matter what the on call GI dr said, we thought she needed to go to the ER because we were not comfortable with what had just come out of her. We left Target and the GI dr called back (not our GI dr) and Brent explained to him what was going on. He didn't think we needed to go to the ER but we told him we felt like we needed to and were going to follow our gut on this one. The doctor said to stop Lydia's feeds until the ER looked at her. I dropped Brent and Jilli back off at church where his car was and they headed home and packed things up and Lydia and I headed to Children's.
We got into the ER and the staff recognized us. The local children's hospital ER is not really where you want everyone to know your name but I am thankful for all of the things that they do for our family and how well they take care of the girls. They got us into a room right away. The resident came in and she was one of Lydia's floor doctors when she was admitted when she was 3 weeks old. She started asking me questions and we came up with a plan. This doctor and I have worked together before and she knows me well and it was a team effort. We decided she needed an x-ray right away to make sure the j tube had not perforated her intestines (that would be very bad) and withing a few minutes x-ray was bringing us in. The resident came back in and said the tube looked to be in a good place. She called the on call GI and they said to send Lydia home on some Carafate (a med used to treat ulcers) and hopefully whatever happened was a one time thing. I was texting with one of my friends who is staying at Ronald McDonald House (rmh) while we were in the ER and she invited Lydia and I to come hang out with them for a little while so that incase it happened again we wouldn't be too far. Lydia and I hung out at rmh for a few hours and had dinner. I started her feeds back up for a little bit and she seamed to be doing ok so we headed home. On the way home we stopped to pick up Lydia's med. Our pharmacists are amazing and keep up with the girls so when they got a script for Carafate from an ER doctor they were worried. They told us to really watch Lydia for anymore vomiting and we came up with a plan to best give Carafate into the G port.
We got home and her feed finished so we turned her off. Around 9pm we gave her the first dose of Carafate into the g with a small water flush. About 10 minutes later the vomiting started again. Our discharge instructions from the ER said to call GI if she vomited anymore so I called and had GI paged again. It was the same guy on call and I could tell quickly that he was tired of dealing with us. He tried to use big words to talk above me and tried to tell me this is normal. He also questioned why we don't feed our children into the g and if they really need j tubes. I got really annoyed because we fed our kids the way that is best for them, this guy doesn't know my kids and he was not going to solve their genetic disorder over the phone on a Sunday night, plus that was not why we were calling him. I got off the phone and Brent and I talked any decided that maybe her stomach just couldn't handle the Carafate (she has been draining 24/7 since Sept 9th and not had anything in her stomach) and decided to just call our GI dr in the morning and come up with a plan since we were getting no where with the on call GI. Brent made formula and hooked the girls up. Shortly after hooking Lydia up she started screaming like I had never heard before. It was a pain cry and she was thrashing so much it was hard for me to hold her. I yelled for Brent to come up and we decided to turn off her pump. She then started vomiting blood again. It just kept coming and coming. We were catching it with everything close to us. We decided this was not right and nothing about this was normal and if she can not handle j feeds then she was going to dehydrate so we needed to get her to a hospital. We all loaded up in the van and headed back to Children's.
Drives to Children's at 11pm are long. We got in and they got us into a room quickly. My heart sighed when I noticed the same ER resident was still there... I knew she would help! She came in the room and we talked a little bit. We decided another x-ray was a good plan and she was going to call the GI on call again. The attending ER dr then came in and he said that there was no way he was sending us home and at that moment I was grateful. Children shouldn't vomit blood and not be able to handle j feeds and I needed her in the hospital so she could get the help she needed. We went to x-ray and they said the tube still looked to be in a good place. The fellow came back in and said the on call GI doctor argued with her but that they were admitting us. She said he questioned her about g feeds as well and she informed him that she was on the team that placed Lydia's NJ tube and that yes it is needed. The nurses came in and got an IV in Lydia. I was so thankful for an easy IV placement... it went in first try! Sometime after 2am they brought us up to the 11th floor (GI/pulmonology floor)
We got into the room and settled a bit. Jilli fell asleep in the car on the way to the hospital and was still sleeping soundly in her stroller. We did all of the admitting stuff and then a floor doctor came in to talk. I said we needed to get IV fluids started asap because she dehydrates fast. I also said that since it was now the middle of the night that I wanted to wait until morning to try anything into the J because there was no point in causing her pain right then, that it could wait til morning. She called the GI on call and she convinced him to sign off on that plan. We got less then 2 hours of sleep that night.
Monday morning we woke up and floor doctors and med students started coming in. Brent took his last sick day of the year as we had no idea what was going to happen. Around 9am he and Jilli went over to rmh and got us a room.
Rounds started in the morning (when lots of different doctors and medical team members meet together to talk about the plan for your child) and a large group gathered outside our door. As the med student was about to start giving report a familiar face peeked out from behind the group (she was sitting at the desk on the phone) and said she was here and would join the rounds in just a second... it was our GI doctor. My heart and mind where SO relieved at that moment! I was nervous that I was going to spend the morning fighting with the on call GI from the night however it was now a new week and our GI doctor was on for the week. I knew at that moment that everything was going to be ok because I knew our doctor would fight and search for the best thing to help Lydia. The med student gave their plan and then our doctor said what would really be happening. She said that we would do a day of gut rest and then when we start feeds that it would be slow. She said if there was any more vomit that we would have to go in for and EGD to figure out what was going on. They also started her on an IV acid reflux med that she stayed on until we were discharged. Later in the morning our dr came back to the room and she and I were able to talk. She was frustrated by what the other GI did and said. She said she was shocked to look at the list of kiddos on the floor for the week and see Lydia's name but that she was going to help us as best she could.
Monday Lydia slept off and on most of the day. It was rather calm as she lived on IV fluids. She spent most of the day not peeing so it was decided to give her a larger dose of IV fluids and then in the evening the peeing started. My mom came to the hospital after work with more oxygen for Jillian and Dan brought us dinner. Lydia cried when they did her night time meds into her j tube.
Tuesday morning Brent brought Jilli over to the hospital and he went to work. Rounds happened and it was decided that we would start her on pedealyte at 5ml/hr and up her by 5ml/hr every 2 hours until she got to her goal of 42ml/hr and then we would talk about starting formula back up (the med student wanted to start at 10ml/hr and up by 10 every hour but our doctor modified the plan). Jaime and Emerson brought me lunch and hung out. They started Lydia with pedalyte into her j. Feeding pumps work by running small amounts in every so many minutes, its not a constant spin of the motor but runs in intervals. Each time the motor spun Lydia would cry. We ended up holding her at 5ml longer then 2 hours. By 7pm she was still at 5ml/hr because she just was not comfortable. I brought Jilli over to rmh for a little bit at night while Brent hung out with Jilli so she could do art therapy and then Brent and Jilli headed to rmh for the night. My parents also came over to the hospital for a little bit on Tuesday night.
By Wednesday morning we got as high as 15ml/hr. Brent works from home on Wednesdays so he started the morning working at the hospital and then headed home because it was oxygen delivery day and someone needed to be at the house for that, plus we were almost out of oxygen at the hospital. At rounds they decided that we would up her rate by 5ml/hr ever 4 hours as she tolerated it and we should send her down to floroscopy to see if that could find why Lydia stopped handing j feeds (she had never had issues with J feeds before Sunday). After Brent left they came in and stopped Lydia's feeds and then took us down to floro. We ended up being down there for a long time because transport forgot us! When we got back up to the room one of our ministers met us there. He read a story with Jilli and we talked and prayed together. It was really nice to have him visit. We also started Lydia back on Carafate in the afternoon but into the j instead of the g because we figured it was something in the intestines that was causing the problem. Lydia did not do well with the first dose of Carafate (the j feeds have to be turned off for a half hour after Carafate is given and she got it 4x a day from Wednesday-discharge). When she came back up from floro we bumped her up to 20ml/hr and she went back to crying when the pump cycled.
In the afternoon Stacy and Caroline came up. Caroline had an appointment at Children's on Thursday so they were spending the night at rmh. The girls enjoyed playing together and it was nice to catch up with Stacy. On his way back Brent stopped at rmh and ate dinner and then once he got back Stacy, Caroline, Jilli and I headed over to rmh. We had called ahead and asked for them to package dinners up for us so we went and got those. Brent also stopped on his way back and picked up pie. Wednesday nights the show Speechless is on and the show hits home to special needs mommas! We had a Speechless party on Wednesday night at rmh with Stacy, Holly and myself. Caroline and Jilli hung out in the wagon and played iPad and the adults watched the show and ate pie. It was what we all needed with the rough week we were all having with our kids' medical needs. The episode hit right to my heart. It was talking about feeling guilty for having fun when your kid is sick and man that is exactly how I was feeling while sitting there. Brent was taking good care of Lydia and he is fully capable of taking care of her but the girls medical stuff mainly falls on me and I feel so guilty if I miss anything in their care needs. That is why I rarely leave the room when they are in the hospital. While I was with my friends Brent sent a text that they tried upping Lydia to 25ml/hr but she was in so much pain they had to drop her down to 20ml/hr again and give her pain meds. I just wanted to cry. Jilli could not go back into the hospital now because it was after 8pm and Brent and I needed to switch children so Stacy watched Jilli at rmh for a little while (the girls thought it was awesome, Jilli was bummed she couldn't sleep in their room) and I headed back to the hospital. When Brent was about to leave the nurse came in to discuss the night plan with us. We said that we were ok with increasing her slightly however we did not want to have to use pain meds unless we had to because we did not want to mask a big problem. We said if she was uncomfortable then we wanted to drop back down. It was a long night with the two bump ups we did. By Thursday morning we were at 30ml/hr on pedalyte.
Thursday Brent's boss told him he could work from the hospital. Stacy and Caroline came over before her appointment and the girls got to play. I am so happy the girls have each other and that Stacy and I have each other. During rounds we decided we would keep with tthe upping every 4 hours and we were going to send her into IR to see if they could put a different brand of tube in to see if maybe it was just the spot where the tube was sitting was an issue. We were trying hard to keep her from needing an EGD because she has been under anesthesia twice already. Around 12:30 Stacy and Caroline headed home and Jilli and I headed down to IR. She already had a tube change out scheduled in IR for Thursday. While we were in the waiting room Brent sent me a text that he and Lydia were on their way down to Ir as well. We got into IR and one of the dr that we have had many times was the one in IR which also made my heart feel better (I' just happy it was not the head of IR). I suited up and went in with Jilli. Brent and Lydia got down there once we were already in and they waved through the door to Jilli which made her smile. Jilli lays still for tube change outs but she does not love them. Thursday morning you could tell she was anxious about it. Once Jilli was done they took Lydia back. We were not allowed to go back with Lydia so we hung out in the Ir holding area. Once Lydia was done they brought her out to us and she was asleep. The IR dr said that while her tube was in a spot that would still be classified as a good place, it was in a different place then her first x-ray on Sunday and maybe the spot it moved to was not good for her. Brent and Lydia headed back to the room and Jilli and I ran to our car quick. Brent had picked up chocolates for the nurses on Wednesday and we had forgotten to bring them into the hospital so Jilli and I grabbed them and Jilli brought them to the nurses. We started Lydia's feeds back and she handled it so much better then she had the night before and we were able to get her up to 42ml/hr on pedalyte by bedtime. Thursday afternoon my mom had a dr appointment in Milwaukee and after that she came up to hang out with us. Brent's parents came for a little while too. Jaime, Jason and Emerson brought us dinner and hung out for a while which was really nice.
Friday morning during round we decided to make the switch to formula. We started her back at 5ml and upped her by 5ml every hour. She did amazing! She hit her goal around 10pm. We decided that we wanted to give her some time to show us she could keep handling formula so we stayed the night at the hospital. Friday our GI dr also came in and Jilli gave her a picture she colored. Jilli really loves our GI dr and we do to.
Saturday morning our dr came in and said that we were good to go. Brent ran to the pharmacy and got her new reflux med (she is now an an H2 and PPI) and we packed up all of our things and headed over to rmh. I hung out with the girls in the playroom (Lydia pooped all over, which was good because she didn't poop Monday or Tuesday and then Wednesday she had a super strange poop, so a normal huge poop was good... but a huge mess) and Brent cleaned the room and got us checked out. We then went to the zoo with our friends Holly, Kirk and Nate. We met them on our first trip to rmh and have become friends. It was a really nice afternoon together celebrating that none of our kids were in the hospital at that moment. When you have friends who's kids are medically complex you send a lot of time with them at the hospital hanging out so it was nice to have an afternoon with nothing medical related just letting our kids be kids. After the zoo we headed home.
The drive home from a hospital trip always feels long. I sent Stacy a text saying that my friend adrenaline had left. When you are in the hospital you live on adrenaline. I don't eat well in the hospital. This trip the adrenaline was high because until Friday we were not sure what was wrong. It worried the ER dr that when we came in I did could not tell them exactly what was wrong. The Children's ER is use to me coming in and telling them what is going on and what we need. Its not that they can't figure it out, they are very smart, its just that I typically know what is going on. This time was harder to pinpoint and its really scary to have your baby puking blood and unable to get fed. As Brent drove I felt the weight of the week making my body weak.
My mom met us at our house with dinner. She helped to entertain the kids while we worked on getting things in the house and put away. My mom slept over which made Jilli so excited! By 9pm I was SO tired I headed to bed. I sat down on the bed and all the emotions hit. The last time I had sat on our bed was very scary. Our room was still disheveled from the hurry we left in and the mess of vomit. It was a reminder of what all we had been through and I couldn't do anything but sit there and cry. I try so hard to hold it all together but this all rocked me. Brent came in and we were able to talk and process the emotions.
Sunday morning Brent had to be at church early again and mom and I got the girls ready. We went to church and then to lunch. Brent then headed home to clean up the kitchen and mom and I went to Target to attempt to finish the shopping list I had started the week before. After Target we headed back to the house and we worked on cleaning. I don't know why it always frustrates me so much with the mess that occurs when we get home from a hospital say. There is always lots of laundry to do and stuff everywhere. For emergency visits we leave the house quickly and so when we get home the house looks like a hurricane hit because when you are running out the door with a sick kid you are grabbing what you need and are not worried about making a mess. It just is what it is and you would think by now that it would not annoy me but it does. We got most of the stuff from the hospital put away and the kitchen cleaned which is a start.
Today we had therapy for Jilli which went well. Our PT is so sweet and called last week to check on Lydia and see what we needed and if she could help us. This afternoon I worked on blogging and taking care of the kids. I started knocking a few things off on my to-do list.

Thank you for all of the prayers while we were in the hospital last week. They meant a ton to us!

A huge shout out to Jilli who was such a big girl this week! She spent most of the week playing on the couch in Lydia's room. There was very little whining and most of our nurses commented on how amazing she acted. I am so proud of her!

Another shout out to our nurses this week who were great. I am so thankful for our nurses! We had a great team who worked for the best thing for Lydia and were really good at communicating with our doctors.We had a great team this week between our floor doctors, our GI and the nurses. This week could have gone a lot differently but we had an all star team! They were a reminder once again why we love Children's so much!

We were also so blessed by Ronald McDonald House this week. From dinner most nights, to lunches that Brent was able to pack in the morning and bring to us (they have a fridge with sandwiches and healthy sides to pack for lunches to take to the hospital) and for art therapy for Jilli. They also had a concert Monday night that Jilli got to attend. It is an amazing place! I had called up there last Saturday before all of this started to reserve a room for Jilli's tube change out and found out that our referral had come in under Lydia and we didn't have one on file for Jillian so we needed to contact the hospital to get one but when we checked in on Monday because of Lydia they took care of contacting people so we now have referrals for both girls so it doesn't matter who had the appointment we are able to stay there. They also gave us an awesome 31 bag with the rmh logo on it filled with baby things for Lydia. It had diapers and a blanket and clothes. It touched our hearts. I can't say enough good things about rmh and thank each and every person who does anything to support their mission.

Now its the transition back to home. Life rather stops when you are in the hospital but now all the things need to get done that were not last week. The house needs to be cleaned and the normal running around needs to happen. Its hard to explain why it is a transition back home but it is.

Something weird was from the time she got her first dose of Carafate until they did her tube change she had no drainage out of the g. They said they don't think it is from the Carafate but the timing rather lines up.... We did get to try U bags for drainage while we were there and they worked well so now we are trying again to get our med supply company to get us some but per my phone conversation with them today that is not getting any closer.
While we were in the hospital I also went to the family resource center and got the girls' mycharts merged. I also looked at a few different things while down there. I picked up the paperwork for a disabled parking permit. It has been brought up before and Jilli qualifies (the child vomits when she is outside and it is less then 30 degrees out) but I keep feeling like I would be using the system if we got it. I picked up the info and will think about it more. Also when they rounded each day on Lydia they described her as a 3mo old with unclassified mitochondrial disorder. I need to check her chart because if that was officially put in there that will make it easier getting her on state insurance as her med costs are starting to add up each month. How crazy might that be that Lydia has a diagnosis in her chart before Jilli!? Lydia's pulse ox also did dips while we were in... we are going to have to keep watching that.

I hope to blog soon about our trip to Shriner's before all of this happened because that was another place that was amazing!

Lydia before puking blood last Sunday... thankfully this dress is red cause it took a lot of blood

Jilli at lunch last Sunday. She loves that Olive Garden kids menus come with stickers

Lydia in the ER the first time

Lydia in the ER the second time

Jilli sleeping in her stroller

Jilli got this tea set as her gift from the magic room!

Lydia was fairly happy on gut rest

Emerson and Lydia

A hospital volunteer came in and played with Jilli for a little bit

Jilli at art therapy

Lydia in the elevator

Jilli and Caroline playing together

Jilli and Caroline in the wagon together

the girls picking out a movie to watch while Brent and I traded places

Stacy holding Lydia and Caroline showing her a toy car

Brent and Lydia in IR

Emerson and Jilli playing together

Lydia on Friday morning

Jilli chilling in the stroller in Lydia's room. On Monday Jilli and Brent went down to the gift shop and got two Mylar balloons... it made Jilli feel special!

Lydia after they took her IV out. She did really well at leaving her IV alone most of the time. She liked to lick the cover that they had on it and she also liked to try to use the IV line as a teething toy. She had an IV running from 2am Monday until discharge on Saturday. They fluctuated the volume based on how much fluid she got in her j tube.