He went to the Day Hospital for Zenapax infusion #2 on Monday. He did not have a good day. He was full of tears and the grumpies. The steroids are taking their toll on everyone in the house. He had a tantrum with Michael that lasted 45 minutes. I realize when he is tired that the tantrums last a long time. Keeping his sleeping schedule consistent is important. He wakes up at least 4 times at night to breastfeed, which has been difficult for me. Steroids cause insomnia. I've tried to let him cry but he will not go back to sleep and cries so loud it wakes up the whole household. Thankfully, the rash is under control. I just wish the steroids were not so hard on everyone.
He has a blister and redness around the entry site of his Hickman line. It was not oozing or angry. A couple of times we found his bandage open and the biopatch on the bed. I think the rash was irritating his skin under the bandage which was causing him to scratch so hard the bandage came loose. When the site is exposed to air it can get infected. Dr. Dvorak and Karen took a look and said to change the bandage every day putting a topical antibacterial ointment on the site. They will look at it again on Thursday.
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4 comments:
Sorry to hear that things are difficult and complicated for you all at the moment. I hope so much that things improve and am so glad for you that you are back at home. I follow your progress closely and pray for you all.
In July, we were in the same place you are now: doing infusions, dealing with steriod attitude, sleep deprevation, and constant breastfeeding. I just want to encourage you that it does get better. God is good and He provides.
Aimee,
I continue to pray for you and your family. I am praying specifically that God will calm David's spirit and bring an end to the mood swings and aggression. He is more powerful than any side effect a drug might have and my prayer is that David will pass through this quickly. I also pray for his quick healing. I am so thankful you are allowing the Lord to carry you through this. With Him all things are possible. Know that you are loved and being held up in prayer numerous times throughout the day.
Amy Boyle and family
Thanks Bev and Amy for your comments and encouragment! There is nothing better than a few encouraging words to get us through the day.
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