More Wins and New Concerns

On January 20, 2011, in Julia's Journey, Personal, by Chris

Hey everyone –

Julia had a very restful night and continued to exceed the team’s expectations in terms of her feeding. I got in at around 6:45am and she was still sleeping peacefully, but soon awoke and was ready for a little more. She took two ounces with no problem and dropped back off to sleep. She might have taken more, but we decided not to tax her tummy too much early on. Nonetheless, the team was very pleased with her feed.

There’s also another marvelous development in that she was taken off the pacemaker as a trial and her heart “flew solo” for the first time with a good sinus rhythm. Dr. Walters was pleasantly surprised at this new development, and is cautiously optimistic about the long term. He left the pacemaker on sensing mode at a baseline level to take up the slack should her heart rate dip below a low threshold, which may very well happen throughout the day. Julia has to “prove herself” over the next few days before he is going to be comfortable taking her off the pacemaker and removing the wires.

A couple of new concerns have arisen with a spike in her temperature overnight and a depressed platelet count. Those of you who have been following the blog for a while may remember the platelet issue has come up before. Children with Down Syndrome have a tendency for a condition called thrombocytopenia, which basically means a low platelet count. They have given her a transfusion, which will hopefully give her the “jump start” she needs to produce her own. The team also wants her to have them so that any bleeding can be controlled when they begin removing drainage tubes (tentatively scheduled to start tomorrow). We’ll stay watchful in the meantime.

Fevers are normal in the first forty-eight hours after surgery, but a later onset is a source of concern. They took blood and urine cultures, but the results will take 24 hours and are not yet back. Fever can have several causes and they are exploring all of them. The wound shows no sign of infection, so that’s good news. There may also be excess fluid in her lungs that she hasn’t coughed up, but she is still draining from her chest tubes a bit and it will be uncomfortable for her to vigorously cough with them still in place. The nursing staff will spend some time working on that, including cupping her chest to break loose the secretions and some vigorous suction that will induce the cough (and make her pretty cranky, we’re told). All in all, we are still on a good track.

I also have a special note to all of you who are praying and thinking good thoughts for Julia: Dr. Walters is aware and very appreciative of your good work. He told me that he and his wife were praying this morning that Julia’s heart rhythm would resolve itself, so he clearly understands the power and necessity of prayer. He specifically asked me to ask you to pray for clarity on the part of the team about how to deal with the fever. Obviously, the issue of the platelets and the pacemaker are sub-concerns that could use prayer focus as well. You have his personal thanks!

Stay tuned for more developments and the results of the day’s plan on a post sometime this evening. Thanks again for your concern and prayers, and celebrate with us Julia’s four month birthday!

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7 Responses to More Wins and New Concerns

  1. Pam Marshall says:

    She is such an angel! Your pictures capture this so well! How wonderful that your Dr. actually appreciated prayers! I am praying for clarity and wisdom. What good hands you are in. I know that you two are there in a world apart from the rest of us…very intense and bonding. I know that you will both be forever changed by this time together! This is kind of like being at her birth together; actually this is like a rebirth for this little one!

  2. Lisa Cook says:

    Everyday we are here, checking, looking, hoping. Everyday we see forward motion. Julia is her own girl, and we trust her judgement and ability to work hard. You guys are half way to home plate. Don’t forget your record of success.

  3. Michelle Timpf says:

    Praying for clarity and for the platelet and pacemaker concerns as well! Julia sounds like a strong little girl!! Keep exceeding those expectations, Julia! 🙂 And happy 4 months, sweet girl!! <3

  4. Renee Stackhouse says:

    Dear Chris & Joce,

    Wonderful news about Julia’s progress after surgery. Have been and will continue to pray for her healing.

  5. Jennifer says:

    Blessings sweet baby Julia on your four month birthday. Glad to hear of her good progress and will pray about the fever. Let Dr. Walters know that he and his team have been and will continue to be remembered in prayer.

  6. Judith Pickering says:

    How God is being glorified through His precious Julia, with the doctor praying for her with his wife and also giving guidance to her prayer army. The LORD is making it easy for us to live in continuous gratitude.

  7. Janet Pasco says:

    Chris and Jocelyn,
    You are an inspiration. Thanks for sharing your story. I will be praying for all three of you for bountiful love, strength and healing as you continue to walk on this journey.
    And what a cool way to get the word out. A beautiful use of technology!

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