Last Saturday Brent was working on our bathroom and mid day he said that his stomach did not feel well but he kept working on things. Lydia struggled falling asleep and didn't end up going to bed until 1am... a couple hours later Brent woke me up to tell me that he was puking. We then went into contain the illness mode where I cleaned and cleaned and cleaned. I decided the girls and I would not go to church in case we had already been exposed because we did not want to spread germs. The kids and I spent the day in the living room and Brent lived upstairs. We also got a text the my brother and Mikaley were also sick (they headed back home Saturday morning). This was one of the sickest I have ever seen Brent. The kids and I spent in the living room...
well lets put sleep loosely. I got Jilli to sleep around 10pm... I fell asleep closer to 11... Jilli woke up at 1 when her pump beeped and it took until 4 am to get her back to sleep. Jilli does this about once a month, where she is up for several hours during the night for no known reason. Lydia then woke up at 6am for the day...
So I started Monday out very tired. Brent ended up taking the day off work because he was still not feeling well and the muscle pain was so bad he was struggling getting out of bed. I spent the morning cleaning more.
At lunch time I ran to Target because we didn't have any crackers or bland food or sports drinks in the house and Brent was hitting the point where he needed to try to eat something but needed something bland. Part way through Target I started to feel a little icky so I hurried up and got home.
I came home to Jilli telling me she puked... and Lydia stuck her head in the puke bucket and pretended to be a mop... grand...
With that Jilli puked again. I changed her diaper so we could keep track of hydration
Between noon and 6pm Jilli took two naps and puked 12 times...
She started to feel warm so I asked Brent to grab the thermometer... and it read that everyone in the house was 95*... we cleaned it and it said the same thing. Brent left to run to Walmart to get a new thermometer because that felt like a needed safety thing so we could watch her temp.
While Brent was gone Jilli started to go downhill fast...
Her sleeping heart rate was hitting 140 (hers is normally 65-80 in her sleep)
Her mouth bacame dry (she normally soaks everything with her drool)
Her breathing became fast and labored
I checked her diaper and it was dry meaning she had not peed in 6 hours
I texted Brent and told him to rush home... he told me walmart was out of the thermometer we use... they even checked in the back (why it was taking a while).
Brent got home and we could not get Jilli to open her eyes for us us for more then a half second.
Shit!
We had a very fast conversation about where we were going to go. I didn't feel safe driving over an hour to our children's hospital... also the hospital closest to our house has failed Jillian before (like she turned blue and their response was "babies turn blue sometimes") so I felt like that ER is not a safe option. There is a hospital on the far side of town (the opposite direction of childrens and have to go through the tourist town) but we tried there once when Jilli was 3mo old and they lectured us repeatedly about why did we come there when we do not see any doctors in their system and they had us drive Jilli from their hospital to children's ourselves when she was 3mo old with sustained oxygen levels in the 80s... if I knew then when I know now I would have never allowed that, she should have been transported by ambulance, but that also makes me question their judgment. That left us with the hospital Lydia was born at. Its on the way to children's and right off the interstate. I went to their ER once while pregnant with Lydia and they handled it well. It felt like our only option. We needed to get somewhere fast and that was the closest place that we felt like had a shot at helping our kid. (please read this paragraph again... and understand the depth of it)
We loaded her up and made a fast drive. Brent stayed home with Lydia.
I got to the ER and got her checked in. The ER rooms were all full and they needed to wait until someone was discharged until they could see us. I sat in the waiting room just praying that would be fast while I held Jilli like a baby, her feeding pump, pulse ox, oxygen, and a bag of needed things.
They called us back to a room. The nurse said that her chart said the was post organ transplant but did not list what... I said the is not post transplant but it is odd that their system says that since this is the same hospital system as her ped?!
Things moved pretty quickly. They started an IV and took lots of labs. They did a chest x ray. Once he bolus of IV fluid was in they cathed her to test her urine (that was not fun... she said she wanted to a spare butt so when they cath her she can swap them out and put the non hurting butt on). They checked her temp and it was 102 so they gave her fever meds. The doctor asked where we normally get care and he called our hospital and arranged for a transfer...
This is where things got slower as we waited for a room at our hospital, which took several hours.
While we waited the staff was amazing. They brought me in drinks without me asking. As the night wore on they brought me a sandwich (without me asking about anything to eat, they just offered). They charged our pulse ox for me so I didn't have to worry about that. They asked if I needed to charge my phone. Once we knew the ambulance was on its way they asked if I needed to go to the bathroom and offered to sit with Jillian so I could do that. I can't say enough good things about the staff. Honestly there was some heart healing that went on for me about local hospitals.
Once our hospital had a room for us an ambulance was sent to pick us up and transport us. Our ambulance team was great.
We got to our hospital and went right up to our floor. We did all the admit questions and such and I finally headed to bed sometime around 5am, to wake back up at 6am in time to be ready for when med students start coming in.
In the ER Jilli was running pedialyte because thats what she runs that time of day. At 5am we tried switching her back to formula but that made her puke (she had not puked since we left home). Around that time she also had her first wet diaper since the day before (they barely got anything out when they cathed her) and it was very light. We ended up leaving her on pedialyte until late afternoon to give her intestines time to rest and then we moved her over to half pedialyte and half formula. We also had her running on maintenance IV fluilds (so she was getting 58ml/hr of fluid in her tube and 52ml/hr fluid in her IV) and it took until late in the day for her to have a real good pee.
Wednesday morning I woke up at 4am to Jilli saying she could not breathe and looking over to her pulse ox crashing. I started moving her oxygen and testing things to figure out that somehow there was a leak somewhere in the tubing between her and the wall because nothing was coming out of her cannula. We got new tubing and moved things around and eventually got her numbers to go back to normal. I then started to not feel well. I decided to take a shower because I learned from when I was pregnant with Lydia that sometimes a warm shower can help me to stop from vomiting. That didn't work and at 6am the nurse found me sitting next to the toilet sick. I text my parents and Brent and my mom said she would come up and help (she had spent the day before helping with Lydia who puked and had diarrhea all day).
Jilli's favorite PT in the hospital came to see her and got her out of bed and they played go fish. She was in a good mood and I was thinking that maybe we would be getting out of the hospital but first we needed to get her back onto full formula feeds.
Around 12:30 they started her on full formula and she started to complain of belly pain an then she fell asleep... and slept for 6 hours!!! This is the child who gave up napping at 2yr old! Once she woke up she was back to complaining that her belly hurt. They came in and gave us the option of going home then or waiting until morning. I chose morning because she was still in pain... and she had not pooped since Sunday morning. Everyone else had diarrhea with this virus and she had not pooped. I worried that once the diarrhea hit she would struggle with hydration.
I made the right call. At 9pm she fought us about doing her meds which is very odd for her. She normally helps to do her meds (she had been fighting them most times in the hospital because she said her tummy was too full, however not doing meds is not an option). We finally got her tube meds and her one oral med in her (she eventually took them all nicely) and then 10min later she vomited her oral med along with bile and weird purple chunks. After that she went to sleep and slept until med students started coming in the next morning.
She woke up with a lot more belly pain. Her special needs team said she looked like a different kid then the day before. It was decided that we needed to do a enema to help her clear out the poop. Thankfully that worked and once it did her stomach pain got better. We were able to be discharged late afternoon and head home.
Her first night home was eventful with a bath and loosing another tooth!
Lydia is doing alright. It mainly hit her Monday and Tuesday. She was in rough shape for a while but was able to stay hydrated. We more need to figure out why the symptoms from the virus she got at Disney are not going away. Since Dec. 12 she has had a cough during the night. It is fine during the day but once she is asleep it starts and many nights she will cough until she vomits. It started with the virus but its not going away even when all other symptoms have left and everyone else is long past that virus. Its strange but greatly effecting everyone's sleep. We have tried doing nebs, having her sleep more upright, a humidifier... all the normal things, and nothing seems to be cutting it and I'm not sure of a clear answer here.
So that was our fun week here! Hopefully this next week is a lot calmer. We also were supposed to have multiple doctor appointments this past week that had to be cancelled because of the hospital stay and sickness so now we need to work on making those up.
Also, this week we are doing our annual Feeding Tube Awareness week fundraiser and we NEED YOUR HELP! To find out all about it please CLICK HERE.
I also wrote another blog post last night that I didn't share on social media that is raw click here to read it
Also please pray for an oxygen situation thats going on... I thought there was an easy solution... I should know by now that isn't the case... however there is a bunch of hoops to jump now :(
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