Monday Monday…

On January 24, 2011, in Julia's Journey, Personal, by Chris

A week ago today, we were waiting for news from the Operating Room and madly texting out whatever morsel of information we could get. Things are quite different now!

The weekend was a mix of forward progress for Julia and utter emotional exhaustion for Jocelyn and I. It’s great to see how one tube after another is getting removed, but we were unprepared for the post-operative discomfort from gas retention (and elimination – phew!) and the attendant loopiness of getting off of the sedatives and narcotics. Versed is a wonderful drug that can make people mercifully forget the procedure they underwent, but it has some pretty wild side effects for the uninformed parent (ed. note – every child has a different reaction). Julia was dealing with everything from lazy eye to “discovering” her hand and occasionally popping herself in the head with it.

The team removed her central line (the big IV in her neck) yesterday and replaced it with a poke in her thumb to be sure they could get an IV in if they needed it. All the pokes have become very hard on Julia and she let the team (and her dad) know that she had had enough, and it made her inconsolable for most of the afternoon. After the third hour of crying and simply not being able to do anything about it, I hit a wall emotionally and had to take a walk and have a hard conversation with the Almighty. There will be more on that in a later post, but I’m glad we’re on the other side of the wall.

I thought we were in for another tough day when the IV in her hand basically fell out from Julia continuously wiggling her hand out of the splint that was supposed to keep it immobilized. The team was going to need to give meds and platelets for the removal of the chest tube, so she would have to receive another poke. I hereby give an official “Friend of Julia” Award to Chirece from the IV team for getting it done with one poke and with a minimum of fussiness of our overly-poked girl!

I’m happy to report that Julia’s final drainage tube has been removed, along with the pacemaker wires. More and more, her body is doing what it’s expected to do with no complications. The team will spend the afternoon letting her sleep off the calming meds (there’s another dose of Versed on board now – darn!) and continuing to wean her off the oxygen. More news coming soon!

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Julia Unplugged – Well, Almost!

On January 21, 2011, in Julia's Journey, Personal, by Chris

Julia had another good day, although most of it was spent sleeping off the sedatives after the removal of her arterial line, her foley (back to the diapers!) and three drainage tubes removed. Gang, all I can say is that the prayer is working! She has one drainage tube left and its flow, though a little cloudy (pray that all will be clear, please), is beginning to ebb. The team has decided to watch it for another day or so before removing it.

It’s not official yet, but they are seeing no growth in the blood and urine cultures thus far and the fever has broken. So the consensus is that the antibiotics has drubbed any infection that was there. She is being weaned off of oxygen and most of the IV meds have been switched to oral.

She dealt with a little… well, a lot of discomfort as her lower gastrointestinal system started back up again. It was reminiscent of the witching hours of colic in months past, but with the raspy voice of the recent extubation.

A lot of good news, but we’re honestly feeling the fatigue of the marathon, so I’m going to cut things a little short tonight and get some sleep. I leave you with a few images of a little dream fulfilled and a mother’s arms filled again…

Thanks again for your continued prayer and concern!

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A Big Day and A Special Message

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

I’m sitting in Julia’s room after a good day, but she’s finally crying from the pain of the chest tubes. It’s hard to watch, but we have dose of morphine on board to keep her comfortable and the team is planning to remove one or more lines tomorrow. We’re crossing our fingers, but Jocelyn may be able to hold her baby again very soon.

Julia’s heart has continued in its normal sinus rhythm for nearly fifteen hours now, but she’s still connected to the pacemaker should there be the need. Our hope is that she’ll go a full forty-eight hours unassisted and at that point, Dr. Walters will feel a comfort level in taking the pacer wires out. You’ll hear more on this later.

Her temperature is still a little on the high side, but her blood and urine cultures are negative thus far, so we’re breathing a tentative sigh of relief. She is on broad spectrum antibiotics, including Vancomycin – what Arlene, our night nurse, refers to as “one of the big guns”.

On a lighter note, a couple Detroit Tigers – starter Max Scherzer and relief pitcher Al Alburquerque came by this afternoon for a quick visit. My sister, Lisa, was green with envy! Even though she’s lived in California and Colorado for years, she’s still a dyed-in-the-wool Tiger’s fan. Julia, on the other hand, was nonplussed and probably more interested in the pain meds that nurse Jacquie was giving her at the time!

We’re already seeing a massive improvement in her eating. In another surprise for the medical team, Julia has taken very well to the bottle again; but the difference in her feeding efficiency and vigor is truly startling. What would have taken a half hour or more for her to take is now being downed (greatfully!) in less than fifteen minutes! The medical team is excited about this as we are!

Finally, we’d like to give Dr. Walters a big thanks and send him off for a well-earned rest. He’s taking the weekend off and leaving Julia in the care of his partner, Dr. Delius. He will return on Monday, but wanted to give you his personal regards and leave you with a message of encouragement. Enjoy and we’ll see you tomorrow!

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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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Big Strides

On January 19, 2011, in Julia's Journey, Personal, by Chris

Hey everyone – just a quick note of celebration tonight! We hit a big milestone in Julia’s recovery, and no one would have convinced me last night the kind of progress we have seen today. Notice anything different? If you don’t, I’m happy to report that as of 12:45 this afternoon, Julia is off the ventilator and breathing on her own!

Like I said, there were many clinical strategies in the removal of a ventilation tube, and I wish I could describe the ins and outs of and intricate decision making that took place. In the end, it was pretty straightforward: Take her off the sedative, reduce the vent settings to a minimum, let her get wiggly, make sure her blood chemistry was stable and pull out the tube. Simple! Yeah, right. Let’s just say that I’m glad it wasn’t me making the decision!

Both Jocelyn and I were a little awestruck at how… routine it seemed. The medical staff prepared us that she might be a little raspy and cranky when the tube was finally removed as she re-acclimated to breathing on her own. If she wasn’t tolerating the lower settings, she may have slipped into distress and would have to have been re-sedated. In the end, she was quiet and reasonably comfortable through the whole thing. It was, in the words of our nurse, Megan, “an easy one.” Thank God for “easy ones”.

Our friend, Ken, who pastors an Episcopal congregation in Rochester Hills, came by to pray for Julia. Turns out that it was a prayer of thanksgiving that our girl is breathing on her own! There are still concerns with her heart rhythm that I assume we’ll be tackling tomorrow, but the lower settings on the pacemaker that Dr. Walters had dialed in this morning seem to be holding.

The team has pulled Julia off of most of the intravenous meds for blood pressure and fluid retention, so they may pull a couple more tubes tomorrow. And as an added bonus, Julia started feeding on her own today!

We still have a long way to go, but we have a lot to celebrate today. Celebrate with us!

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