Saturday

Well guess what? We got discharged home!!!!! Elise has really improved and they decided to send her home. Now she will continue to go through withdrawal for the next few days but we have Ativan to give her to help with that. She ate a little today and that will improve each day. She is really weak still and has to walk with assistance and will increase her physical therapy to three times a week over the next 4 weeks. My mom leaves Monday so this worked out perfect. Thanks for all your support over this last couple weeks. We are so glad to be home and can finally celebrate Christmas with the girls.

Friday

Elise is doing really well since being extubated. She is down to 1 1/2 liters via nasal cannula and as of tonight is off all iv meds. She does continue to have withdrawal from all the narcotics which is hard to watch. She is very weak and still cannot stand on her own and even has trouble holding her arms up to play they are so weak. She did eat small bites of food today and drank water. She still has a feeding tube to help with nourishment. We are not sure how long her withdrawal will last, but it could still be a couple more days. I'll keep posting in the evenings.

Thursday night

So Elise was extubated today around 2. She is doing really well from a respiratory standpoint. She is having some withdrawal from coming off the narcotics that where keeping her sedated, but we are giving her oral meds to help with that. She is very weak, stiff, and sore but happy to be unrestrained and extubated. She spent some time on her daddy's lap and is now sleeping. She has already taken sips of water and some meds by mouth. They have a feeding tube that goes down her nose that they will keep in until she starts eating.

Thursday

We may be able to extubate later today. They weaned more vent settings and sedation yesterday and last night. She is having longer alert periods today and watching tv when awake. But with her being more awake comes agitation and restlessness. So we r getting everything ready to extubate later today! I'll post again at 7 our time with another update. Keep your fingers crossed.

Wednesday

Elise continues to slowly improve and tolerate the vent wean. Today we will attempt to turn off her nitric completely which is a big step. Next we will start weaning her sedation meds. They say we might be able to extubate Friday or Monday if all goes well. I'll post again tomorrow after the doctors round. I hope everyone travels safely home today. Love to u all. Kristin

Merry Christmas!

Elise had a great night. She required less sedation last night which is good. We are still waiting on the doctors to round that's why this post is so late. They have started weaning her vent settings and nitric oxide and Elise seems to be tolerating things well. We gave her a good sponge bath this morning and I brushed her hair and pulled it up in a pony tail. When I woke up Santa had visited Elise here in her hospital room and even brought toys for Claire too.

Someone is sending food here for all the families today so we will have our Christmas dinner here together.

So the plan for the next few days will be to continue to wean her vent settings and sedation with the anticipation to extubate her the end of this week or the first of next week if all goes well.

I hope everyone has a wonderful Christmas. It looks like most of you will have a white Chrisrmas. I'll post again tomorrow morning. Love to u all.

Christmas Eve morning

Jason said Elise had another stable night. Not a whole lot to report since there isn't much that has changed. I hope all of you have a great Christmas Eve. I won't post again until tomorrow, so please enjoy this day with your families. We love u all.

Sunday night

Elise had a pretty good day. She had a repeat echo that showed her pulmonary pressures where not high which is good. We are continuing to have trouble keeping her sedated and keep increasing her meds and adding new sedatives which can make it hard to wean when they are used for long periods of time. She may get more blood tomorrow to increase her hemoglobin levels more to help with oxygenation.

I was able to come home and cook and do laundry to get me mind off things. And now I'm going to go sleep in my bed for the first time in 6 days!!!!! So I will post tomorrow morning after I talk to Jason. Love you all, Kristin.

Sunday morning

Elise had a long awake period last night and was trying to talk to me and was being silly trying to tickle me. I was able to get her to smile. She wasn't upset about all the tubes, but was upset about her arms being restrained and kept trying to sit up and scratch her nose. So we had to increase her sedation to help her rest at night. All her labs look a little better this am but are still not great. And her chest X-ray shows minimal improvement which is better than getting worse I guess. So for now we are going to keep her sedated and intubated and not really change a whole lot. She has been crossing her legs this morning which has been cute.

I suggested to Jason last night that he go get a beer with some friends since mom was here to help with Claire to give him a break. And we will keep our bedside vigil schedule of him during the day and me at night that way when he gets back to work tomorrow he'll be on the same schedule.

Mom is going to spend some time with Elise today while I spend time with Claire and get some stuff done around the house. I was able to get some sleep last night since Elise was able to rest as well.

I'll post again tonight. Merry Christmas Eve eve everyone.

Saturday night

Elise had a pretty uneventful day. We worked on getting her electrolytes back to normal, and she got more of Jason's blood. We pulled some stings and got the CEO of the blood bank to approve both of us to go in today and donate more blood in case she needs it this weekend, because jason was supposed to wait a couple months before donating again and they don't do direct donations on saturdays.

She is getting a lot of rest being sedated, but still has wakeful periods where she looks around for us and wants to hold our hand or her bunny. She really doesn't like it when they suction her and it breaks my heart when she reaches for me and looks at me with a grimace on her face asking "why?," wanting them to stop. I hope we will have another quiet night like last night and her body can continue to heal.

Claire had a great day with my mom bopping around town shopping. And Jason just left to head home for the night. I'll post again in the morning.

Saturday morning

So Elise finally got some rest last night after 5 rough days. I wouldn't say she is "better" today, but she definitely didn't deteriorate anymore. She is tolerating being intubated pretty well. She gets upset when she is trying to cough or when they suction her. My mom made it in a little after 5 am and is now resting here in Elise's hospital room. Jason is on his way in now and will spend the day with her while I spend time with Claire and rest. I'll update again tonight.

Friday night

So her intubation went well this morning and they are keeping her sedated but not paralyzed, so she is able to open her eyes and look at us and squeeze our hands. They found that she also has pneumonia and is anemic again. Even lower than last time, so she is currently getting Jason's blood. They are concerned about how quickly she became anemic and are trying to figure out where she is bleeding from. They have been getting blood when they suction her ET tube which makes them concerned that she is bleeding in her lungs. They will continue to watch that.

Claire spent today playing with our friends Kessa and her kids and Mom. Thank you Kessa for keeping her for us today.

My Mom is currently attempting to get here. She is stuck in the airport with a delayed flight. I am beyond grateful that she has dropped everything in her schedule to come help. And I am deeply sad that my Dad will be alone on Christmas, although she reassures me he will be fine.

We have had so much support from family, friends, and so may offers to help with Claire. Thank you to everyone.

I posted a picture below even though I told myself I wouldn't. So I'm sorry if the picture is too much for some of you, just don't look.

I love u all and will post again tomorrow.

Friday

So Elise had another rough night. Long story short she is now intubated with a breathing tube. She also now has a PICC line which is a long term iv that is used for not only giving meds and blood but also for drawing labs so she doesn't have to be stuck over and over. They put a feeding tube down her nose into her belly to give her meds and nutrition. We are not sure how long she will have to stay intubated but at least now she can rest and hopefully start getting better.

PICU update

So Elise has been more stable today with the sedation and addition of inhaled nitric oxide to help improve her saturations. She has tested positive for RSV which is a respiratory virus that makes infants and kids with chronic illnesses really sick. Since it is a virus they cannot give her antibiotics for it so we are only able to treat any symptoms and try to keep her from deteriorating anymore. Jason donated blood today so they can transfuse her tomorrow since she is anemic again as well. They are treating her strep throat with IV antibiotics and treating possible lung infection seen on her chest X-ray with another antibiotic.
Claire had a fun day playing with Nola and Brooke. Thank you Brooke for taking on 2 toddlers and an infant today. Jason and I will take turns over the next few days being with Elise while the other takes care of Claire and the dogs. Looks as though it is likely that we will be spending part or all of Christmas here at the hospital. Which is ok cause Elise can wait and have her Christmas once she is home and feeling better.
Hopefully Elise and I will have a better night than last. I'll update again tomorrow.

Sick once again

Elise is again in the picu with another episode of fever and desats with increased oxygen need. She seems to be worse this time and has been desatting into the 40'a and 50's which is really scary. She is currently sedated so that she will tolerate having a mask on her face to deliver oxygen since the nasal cannula wasn't enough.
Claire is staying with our friend today. We aren't sure how long we will be here this time, hopefully not through Christmas. I'll update again tomorrow.

Things have been going pretty well. We had a good thanksgiving even though both Elise and Claire developed a cough and fever. Zac and Miranda came up to be with us and Miranda and I ventured out to do a little Black Friday shopping which was fun. Elise is feeling really good this week and is tolerating her new med really well. We had an appointment with hematology last week and they can't find any other causes for her anemia besides her existing pulmonary hypertension. Which isn't bad news really. At least she doesn't have some serious illness causing it. We are still waiting to hear back from a couple doctors that have been sent her chart for new ideas.
We are having a beautiful winter and Claire is walking everywhere and is so independent is adorable. I hope you all have a great Christmas. I'll post again after the holiday unless Elise gets sick again.