spring pictures

clinic

We woke up at 6 and headed to ft worth for clinic. We arrived at 11:20 for our 11:45 appt. Her counts were ok and we were out of there at 1:30. not too bad. Brandon made it over after work around 12:30 so we went to lunch together. We also saw Briley there and she was getting chemo. she had about 15 minutes left when we got there, but Gracie was a bit on the grumpy side so they didnt play. Briley gave Gracie a pink and black tutu and they let me take their picture. adorable sweeties. we made it home around 7 and then the home health nurse came by at 8:30 to show me how to mix the TPN and hook it up. She will start it tonight, 12 hours every night. they will check her labs here in town on Thursday to see what needs to be adjusted, if anything, and order 4 days at a time. hopefully in the next few weeks, she can get a little ahead on her nutrition. we are so excited for 3 weeks at home. :) tonight also starting 2 weeks of accutane. blah

Home again!

Thursday afternoon, her arm started swelling up from the IV and hurting a lot. it was red and puffy and she was screaming from the pain saying "I can't take it!" it was cute and sad at the same time. They stopped the antibiotics and took the IV out. all of her blood cultures were negative anyway, so she didnt really even need them at that point. She was so glad to get it out. Thursday and friday went ok as far as pain but she still had some puking. Friday we left around 3 and headed home. It was soo good to get back home after 2 weeks. Von just hugged me so tight and cried and cried for about 10 minutes. poor kiddo. He hasn't wanted me to leave his sight, until just today. Tomorrow we will drive back down for clinic and then we will start her 2 weeks of accutane and also some TPN at night at home, along with the milk feeds. They also want to try adding a tsp of canola oil before the feeds to give her extra calories. we will see if she tolerates it. all in all it was a much better round than the 2 weeks of round 2, so we are grateful for that! also grateful she only has one more week in the hospital for round 5. the end is finally in sight and Gracie is happy and doing ok. please continue for her to gain weight and strength! xoxo

Round 4 week 2

Let me start by saying we had a Wonderful weekend!!!! I hadn't seen Gracie so happy and giggly in a very long time. She did very well and we had fun playing in the playroom at the McDonald house, and out on the playground (until she saw the ants!! Lol) we went and got a pedicure and bought some things at target.
The home health didn't deliver the TPN until 10 pm Friday night, and didn't send a nurse. I calledthem and there was a miscommunication sonewhere along and they said they'd send one. They finally came at 11 pm and got it all hooked up. They came the next day at 2 just to get it ready and then I hooked her up at bedtime. She did very well all weekend and didn't puke or anything. She even ate 6 bites of lasagne! Also a couple animal crackers and a few bites of oatmeal :)
Saturday we went to the neuroblastoma walk and got our tshirts and then she said she was ready to go. She was just too tired from being up late the night before.
Sunday night we checked back into the hospital for week 2, Brandon arrived shortly thereafter and we were so happy to see him! Monday they started the IL-2 at 9 am and the ch14.18 and pain pump at 11am. They decided to keep the ch14.18 at 5 for 20 hours a day instead of going up to 10 for 10 hours. She has always run into issues in the past and had to go back to 5 anyway. She did well until about 4 hours in as usual and started having a lot if tummy pain. I was confused because last time she did really well on the fentanyl so I kept asking if it was the same rate and they finally figured out late that night that it was at 5 last time and only at 1.3 this time, they increased it to 3 for an hour and then up to 5. She still needed quite a bit more on top of that so the next night it was increased to 7. Since then she ha done much better as far as pain goes.
Last night she spiked a fever and had to get an IV in her arm. She was not happy about it but she held still like the champ she is and once again impressed everyone!! Her broviac has two lines but she has the IL-2 in one and the ch14.18 in the other, so the IV was needed for antibiotics since they aren't compatible with either one.

Week one is done! (round 4)

Wednesday night was a very loooong night. She spiked a fever of 103 and she woke a lot and puked three times even with feeds at 30. We left the feeds off all day and night Thursday and she still puked a couple times. Good thing she at least had the TPN. She gained one lb this week :) last night she woke a few times but it was much better. We headed over to the McDonald house around 1 and the parking lot was nearly full which is rare. I am supposed to call int he morning to make sure they have room but I forgot. Well, we luck out and got the very last room!! Thank goodness. Gracie got a build a bear that someone had donated, so we went and chose an outfit with the ten buck coupon. :) home health is bringing the TPN this evening and show me how to do it. I will try the milk as well tonight.

Day 2/3

Well we tried going to 70 on the feeds Monday night but she puked. We turned them down to 40 and she still puked, so we turned them off altogether until Tuesday morning. Tuesday she only puked once and it was when she was needing her DDAVP and drinking a lot. That seems to be when it happens a lot of the time. They also started her on TPN last night and I kept the feeds at 30 overnight and she did rely well with no puking ;) she did wake a lot and need to pee and was uncomfortable. She got some lortab this morning and is happy and chatty. We will keep the feeds at 60 in the day and 30 at night along with the TPN. We will discharged Friday morning and go to the MCDonald house for two nights and be admitted for week 2 on Sunday. Theu are going to send some TPN with me for the weekend also. Friday we plan to do something fun like a pedi or a movie. Saturday there is a neuroblastoma walk that we will go to for the fun stuff, face painting, games and food! I had heard about the walk a few months ago but didn't plan on being there so I forgot all about it. Now with the change in schedule, it turns out we were down here for it after all. This is the 4th year they are doing it and all proceeds go to Cook Childrens hospital.
Cooks also just opened a build a bear in the hospital. It is the very first build a bear in a hospital setting and they have medical related themed outfits as well as regular ones and the prices are the same as other build a bears. All proceeds go to the hospital and every time we are admitted she gets a ten dollar coupon. So next week she will get another one nd be at 20 bucks off already. She is looking forward to it!

Round 4 day 1

We got here last night at 8:45 and get all checked in and settled into bed. She finished up her accutane last night and also her last dose of hydrocortisone that she had been weaning off of the last 6 weeks. She did well all night with the feeds at 60. They started the IL-2 at 9 this morning and it will run for 96 hours. She did great all day with everything. She only needed lortab once this evening and she has been resting and sleeping well and pretty happy. :) I'm glad the first week is the "easy" week because next week, Brandon will be able to come after work since he will be working in Dallas. I had a really hard time with round 2s second week and it gives me comfort to know he will be around some of the time. Gracie Hasn't been gaining weight even though she has been tolerating her feeds at 60, we are trying them at 70 tonight and hopefully she will do well with it and we can increase more soon. They are testing for malabsorption although they don't really think that's the issue, we will see. They will give TPN through the IV for a few days, in addition to the milk feeds to see if we can get some leeway. Thank you for your prayer as always! Xoxo