Saturday, December 29, 2012

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, December 28, 2012

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, December 27, 2012

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, December 26, 2012

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

Tuesday, December 25, 2012

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.





Monday, December 24, 2012

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, December 23, 2012

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, December 22, 2012

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, December 21, 2012

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.

Thursday, December 20, 2012

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.



Monday, December 3, 2012

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.













Sunday, November 11, 2012

Back off oxygen

Elise is feeling better and was able to come off oxygen Saturday, just in time for another tailgate. We went to our friends lake house today and had a great afternoon. We will really miss the weather here in Florida once we move next year. Elise will go back to school tomorrow after missing all last week.

Wednesday, November 7, 2012

Sick again

So Elise is going through another "episode" of fever, shortness of breath, and low sats requiring oxygen. We spent 4 hours at her cardiologists office Monday drawing labs and doing an echo trying to figure out what is causing these events that have been happening every 2 weeks since Labor Day. We hope to have her back off oxygen by this weekend as she improves each day.

Claire is walking a few steps at a time if you tempt her with something she really wants. And she loves Elise's jewelry. It's so cute.

Wednesday, October 31, 2012

Halloween

So we attempted going out for Halloween this year. Well, I did it without Jason since he had to work. It went ok. I did all the talking for Elise while she stood 10 feet back from the front doors, but she did get courageous a few times and took candy from bowls. But her favorite is still waiting for kids to come to our door. Claire was her usual laid back self and enjoyed the candy.

Monday, October 22, 2012

Elise's doctor appt went well. Her cardiologist was happy to see her doing so well. He will consult with hematology and get some labs ordered next week to recheck her anemia and liver function after starting her new med. She has been completely off oxygen for 2 days now, and is satting well at night. Her appetite and energy level are so much better its amazing. We enjoyed lunch at the park today before we went to the appt, which is what the picture of Claire is from.

Thursday, October 18, 2012



So first I have to apologize to everyone who has been waiting for a blog update.  We have been crazy busy since coming home from the hospital, but that still isn't an excuse for not keeping all of you updated.  So to my surprise they let us go home late Friday with Elise on oxygen and a pulse ox.  She is continuing to improve and we actually tried her off the oxygen today.  She is still desatting with activity, but re saturates pretty quickly.  She has started her new medicine this week and seems to be tolerating it well.  We will follow up with her doctors on Monday, so I will update the blog after we hear from them.

As you can see Claire came back to us Monday with my Mom.  Thank you to everyone back home that helped watch her while we were in the hospital.  It was hard having her so far away but I knew she was in really good hands and getting lots of attention.  We visited a pumpkin patch yesterday and the girls had a great time picking out pumpkins.  Elise has chosen spiderman, rather spidergirl, this year for Halloween and asks to wear it everyday.  Its really cute.

Thank you to everyone that sent Elise goodies last week, and us cards with words of encouragement.  And thanks to everyone who helped with the dogs, brought food, etc.  We couldn't get through this without all of you. 

Wednesday, October 10, 2012

So Elise did well with her first unit of blood last night.  She pinked up and was in a really good mood.  It took me until after 11pm to get her to go to sleep, she was being so silly and playful.  It was really nice to see her that way after so many weeks of her not feeling well.  They gave her another unti today and she was napping as I came home to shower and walk the dogs.  Jason is with her while I take my break.  Next step is to start her on a medicine called Bosentin.  It is a drug specific to PH, but is not FDA approved for kids so there is a lot of paperwork to go through.  It causes liver toxicity so she will have to have monthly lab draws, and it has teratogens so I will have to wear gloves when handling it.  She is still very deoendant on her oxygen and we are still trying to figure out why.  Her cardiologist here is going to consult with her cardiologists in St. Louis to help figure things out.  Hematology is still working on a cause for the anemia too.  So she will remain in the ICU throughout the weekend and possibly into early next week.  They will not release her when she is so dependant on O2.  Jason leaves this weekend for a conference in D.C., so I will be at the hospital round the clock.  Luckily we have some amazing friends who are going to help with the dogs.  Thank you guys!
I'll post again tomorrow evening. -Kristin

Tuesday, October 9, 2012



So the pole behind Jason's head has the blood for Elise's blood transfusion hanging on it.  Jason donated his blood yesterday and Elise is getting it today.  Her heart rate and respirations have come down since yesterday but her need for oxygen is still high and she desats very very quickly.  She is homesick, but is a real trooper with all the blood draws and meds that she is having to take.  It's hard for a 4yr old to not be in control of anything around her.  She is frustrated and tells everyone who comes in the room to "go away!"  We are still looking for a cause of the anemia so we know what to treat otherwise this blood transfusion will just be a short term fix.  Doctors think she will be here for another "several days" still.  Thank you for all your thoughts and prayers.  Claire is doing well hanging out with family in Missouri, Jason and I miss her so much, but know she's in good hands.  Love you all, I'll update again tomorrow eve. -Kristin

Monday, October 8, 2012


So Elise hasn't been feeling too well over the past month and worsened over the weekend.  She is now in the pediatric ICU here in Gainesville.  I am staying with her 24/7 while Jason works.  Claire is with my mom and dad and all of Jason's family back in Missouri while we figure out what is going on.    
She is on continuous oxygen, on monitors, and is anemic.  So they are testing her for causes of the anemia and worsening shortness of breath.  Jason has donated blood to give to Elise hopefully by later tomorrow or Wed.  We have a viral test that is out that should be back tomorrow to see if she has some crazy virus that is making her sick.  And they are running other tests to look for a cause for the anemia.  Not sure how long she will be here or how long she will be on oxygen.  I'll update again tomorrow when i know more.

Tuesday, October 2, 2012


 Tailgating has started up again, and the Elise was really excited.  Claire seemed to catch on pretty quick.
 We traveled home to Missouri couple weeks ago and had a great time.  We were able to see all the family a couple times.






 Then we made a trip to Spokane Washington for my Aunt's wedding.  This picture is of my Godmother Aunt Sue with her daughter, my Godchild, Samantha, who is Claire's Godmother.


 Elise was the flower girl at the wedding although she didn't walk down the aisle by herself.  I had to carry her because she was too scared.
 We couldn't wait to get home after many, many flights.  There is just never enough room on an airplane.
On a different note, Elise hasn't been doing so well.  Her PH has seemed to worsen over the last few weeks.  As you can see by the picture she is on Oxygen at home when needed and we added back Viagra to her meds.  She had a cardiac cath done once we got back and they found that her pressures are just as high as they were back in 2009 when she had her last cath which isn't good.  They also found that she is anemic which doesn't help her oxygen saturation.  So now we have increased her Viagra to a max does and added a daily iron supplement.  She will also see a hematologist which is a doctor that studies blood disorders to see if we can figure out why she is anemic.  Her cardiologists may also add a 3rd med called bosentin, but that is still a few weeks off.  We aren't sure if she got a virus that made her worse, but what we are sure of is that she didn't improve over the last 2 years like we thought she had.  She is in good spirits each day and is still going to school and therapy but tires very easily and is short of breath a lot.  So I'll let you guys know something when I know more.  Love you all, thanks for your thoughts.  Kristin