Get this thing outta me!!

We had another interesting evening here in Philadelphia. Unfortunately Aurelia's last IV infiltrated and we had already left for the day. Jillian, Madison, and her mother spent the night in Gettysburg, much like I did last week, caring for the cats, cleaning up from lack of use, and doing some shopping. Dr. Davies, the fellow on duty, called at midnight to tell me that unless a viable vein could be found we would have to place a central line.

Those lines enter an artery at the groin and, while more permanent than an IV, are still less i9nvasive than a PICC line. I gave my consent, knowing that the procedure itself is fairly low risk, and today she looks far more comfortable.

Medicinally, Aurelia is down to 1.5 mcg/hr of Dexmedetomine and 2mcg/hr of Fentanyl, both steps in the right direction as we move toward extubation. Our plan is still to extubate today, and her nurse, Jessica, is weening Aurelia off the ventilator. Aurelia's temperature is fine, or low grade, as she wrestles with whatever it is she has in her lungs.

I'm hopeful today. Maybe we will have this tube out of our girl's lungs and we can get down to the business of accurate and adequate pain management for her distractors. Ideally I want plastics confident enough in Aurelia's status to train Jillian and me to move her jaw and thereby release us before we have Aurelia's open heart surgery. There is a chance they will want to keep us here until then, anyway, and that frightens me terribly. One day at a time, though, so we'll see.

I'm burning up in here!

Today has been a relatively quiet day. Aurelia went through the night with only a few hiccups, trying to turn over a few times, needing a pain management rescue now and then, and otherwise attempting to wiggle free of her intubation. Truly, though, she's doing relatively well. She's a wonderful fighter determined to beat all that comes her way. She inspires Jillian and me to keep faith and strong together.

Plastics came by this morning and moved her jaw two millimeters. Aurelia took it on the chin like a champ (da da dun, ching!) even after only 30 minutes lead in time with a pain med treatment. She did so well the plastics folks are intending to come back tonight for another 2 millimeter extension.

The day itself has been rather uneventful which oddly keeps me on edge more than a crisis would. Aurelia had some mild alterations in her pain medications to keep her sedated and from turning over (which she successfully completed early this a.m.) and subsequently aggravating her jaw. The IV she lost yesterday in her foot has yet to be replaced because they taped down and isolated the remaining IV in her left arm with a brace. We hope her veins are repairing themselves in case we need to drop a second line in for medicine administration should this last IV infiltrate.

Aside from that small adjustment to her pain medication, our daughter continues to gain strength. Her oxygen saturation levels are good, no longer suffering from momentary desaturation and she appears to be bouncing back well. We have a few concerns, such as a stubbornly resistant slight temperature, a fairly good amount of phlegm coming up from her lungs via suction, and a resulting junky sound over the stethoscope. The attending isn't terribly concerned; fevers are common after surgery and broken bones, and Aurelia's labs yesterday came back great. Similarly, if there is an infection there have been no substantial changes to Aurelia's vitals, meaning she is resisting the bacteria/virus well on her own. If there is a change in any vitals then we'll culture some of the phlegm from her lungs and draw more labs.

We are hoping for some more good news soon, however, particularly regarding her tracheomalacia. ENT did not mark malacia as present during the scope, so we don't know for sure, but we can hope that our little warrior has outgrown this airway debilitating problem. On a scale of 1 - 4, with 4 being, "HOLY CRAP, CALL IN THE REINFORCEMENTS," Aurelia's throat is listed as a 1, or a non-critical airway. That thrills us, since six months ago she'd have airway collapses from getting too worked up! We look forward to final confirmation from ENT, but we think the news will be good. We hope, anyway.

So that's all we have for now from CHOP. Maybe more later, if not, definitely more tomorrow.

Here's our girl this morning, resting after having her jaw advanced. Please no comments about her thighs. She's very sensitive about them. ;)

Who's Who

Our time in the CICU has been full of memories, good and stressful, as we see old faces and remember previous pod-mates during our past stays. Our attending is Dr. Naim, plastics is led by Dr. Taylor, Dr. Rizzi worked on her from ENT, and even her cardiac anesthesiologist has been someone we know from previous operations. All these people help Jillian and me feel at home here since everyone has a history treating Aurelia.

Dr. Naim in particular is delightful; she cared for Aurelia during our daughter's first few weeks of life and has remarkable background knowledge about our little one's needs. She so adores Aurelia that she requested her as a patient upon our admittance and routinely comes crib side just to 'get some love' from our daughter, who smiles and asks for hugs from all who come near. Dr. Taylor continues to impress us with his knowledge and affable nature, and Dr. Rizzi's bedside manner always keeps us at ease.

These are the miracle makers at CHOP. They have made this entire task seem remarkably less daunting, especially since we are looking at three very difficult months - three weeks of pain inducing jaw advancement (what is in essence daily resetting of a broken jaw, combined with additional bone growth), the subsequent final healing of her jaw and neck, open heart surgery, healing, and hopeful improvement.

Today Aurelia is much the same as yesterday. Three times she's tried to roll over (not an easy task with your breathing tube shoved down your throat and sutured to your nose) and other than that we need to keep the status quo - sedated and comfortable, not too riled up, work her feeds back up to normal amount, decrease her breast milk fortification while she's not moving around, watch for infection, and monitor her lungs and jaw.

Today's x-ray came back looking good, no signs of anything unexpected, her swelling is reasonable, and it appears we will leave her intubated throughout the weekend. Even though Aurelia is not listed as a critical airway, plastics is hesitant to extubate our girl over the weekend when fewer staff is on duty at the hospital. We won't start moving her jaw today, but we will probably start tomorrow with 2 mm increments. This is an increase from 1 mm, but Dr. Taylor believes Aurelia can handle the increase. The plan is to move her jaw and keep x-raying her until we are comfortable with tongue placement inside Aurelia's mouth, relevant to the back of her throat. I'm terribly scared of the pain this might cause Aurelia. I think I fear this process more than anything else because it will last so long; even heart surgery's pain lasts roughly four days before it can be managed by tylenol; not this....this is something that could be hurting Aurelia for weeks on end.

The ear tubes went in without problems yesterday as well, and we are putting drops in her ears every now and then to prevent infection. She's not having any trouble with those drops because, well, she's unconscious. The only other thing we are waiting to see is the progress on her trachea malacia. Hopefully there has been improvement, but we are unsure of just what's going on with that as of this point and time. Our care team is going to get the report from ENT and then we will pass that along as we find the information.

Here is our baby girl just after surgery. You can see her breathing tube up on that contraption to prevent her from having anything on her sore and swollen face.

Here you can really see the screws we'll twist to move Aurelia's jaw

What a whirlwind

So. Here we are. I wonder why it is this blog only ever sees attention when I have difficult things to post? We came here Sunday night from Connecticut (after visiting parents on both sides) to participate in a sleep study. We wanted to see if Aurelia had sleep apnea. The test revealed severe apnea, to the point of her oxygen saturation dropping thirty to forty points into the 50s. The results astounded us, making me question my ability to care for Aurelia at home; how could I have overlooked something this dangerous? We gave her oxygen, measured her saturation rates and even monitored her O2 levels daily, so how did we miss sleep apnea this bad?

Little did we know, but babies with terrible apnea often learn to position their bodies optimally for improved breathing. Aurelia's preferred sleeping position was on her side, 3/4 turned, back arched, head back. She subconsciously moved her tongue forward in her palette and minimized the impact of enlarged adenoids every night. During the sleep test, wrapped as she was and forced to lay flat on her back, she sounded like a freight train rumbling on decrepit tracks, squealing under heavy load.

Since 3:00 a.m. that morning we've been reacting to constantly changing circumstances, expectations, assistance, and fears. Monday came and went without any surgery and only the beginnings of a plan to treat Aurelia and Tuesday brought more frustration as plastics, ENT, and cardiology attempted to develop a care plan for our little girl. We did our best as a family to stick together though we all felt completely helpless and unable to control any part of the situation. Jillian and I tried to get organized for what could be a multi-week stay at CHOP, and Madison persevered valiantly, trying to have fun and understand why her sister was so sick and we couldn't go home to see our cats, Ulysses and Shiloh.

Frantically, we canceled therapy and doctor's appointments for this week, made arrangements for friends to care for our cats, secured lodging at the Ronald McDonald House, and convinced Jillian's parents to come down for a few days during and after Aurelia's surgery. We completed these tasks amid ever changing plans for Aurelia. Doctors informed us that Aurelia's care could require weeks at the hospital, that we'd be having one surgery, or two surgeries, maybe repairing her cleft palette, maybe not, maybe looking at a tracheotomy, maybe removing her tonsils, maybe doing nothing, maybe moving her jaw. What registered clearly for us was that until these breathing treatments were resolved, Aurelia would not have her next heart surgery in July.

We trust the care teams at CHOP with our daughter's life, so really we knew that our preparations had to be for the most severe scenario - a two to three week recovery from multiple surgeries leading straight into her next open heart surgery in mid-July, with us getting home sometime right around the beginning of August. I cried, cursing how a stupid sleep test could turn into more than a month away from home. I fumed, infuriated that my family was thrown into tumult with little I could do to restore balance and order.

To make Aurelia's (and Jillian's) time in the cardiac intensive care unit somewhat easier - remember that these rooms are four pods a piece, with limited family members allowed bedside by each patient, I left Philadelphia with Madison Tuesday. To her credit, Madison rallied her spirits here wonderfully, but she is just a bit too loud for promoting appropriate care in an intensive care unit. At home I could both occupy Madison and take care of some loose ends at the house. Jillian remained with Aurelia, focusing her care entirely on our little one as surgery approached.

We went into surgery this morning with a plan in place. Aurelia would have tubes inserted into her ears, her throat and bronchial tubes scoped, her vocal chord paresis examined, her enlarged adenoids trimmed down, and her mandible advanced. The surgery would involve both ENT and Plastics, and last for several hours. Aurelia has come through that surgery wonderfully and now recovers. In future posts, I will talk more about the procedures and some of the people working on Aurelia during this most recent stay here at CHOP.