Tuesday, May 3, 2011


Overwhelmed is the theme for this week.

We've been slammed with back to back appointments, surgery, equipment deliveries in amongst the typical weekly and/or monthly deliveries of supplies, preparing for our trip to Disney and all the planning and organizing that entails, along with a change in medications and the daily schedule. Not to mention, I'm sick. Yep, it's true. There doesn't appear to be enough cough suppressing drugs on the market to contain the breath that randomly bursts out of my lungs. I don't have time for this!

My head spins just thinking of all that needs to be accomplished and stable before we're able to pile our 3 children and the traveling hospital that must accompany us into our accessible mini-van.

Oh. My. Gosh.

Yesterday we left first thing in the morning to make our way to meet the surgeon who will be skillfully performing a surgical procedure on our boy later this week. Wyatt has had a PICC line (Peripherally Inserted Central Catheter) since starting IV nutrition 7 months ago. It was discussed among the IV team and Dr. R several weeks ago that we must move on to a more central location at this point. And he'll be having a double lumen broviac catheter placed on Thursday. We talked about the timing of the surgery coupled with our impending vacation, but we're determined to make it work one way or the other. After all, 'making it work' is what we do. Wyatt is known to have complications with anesthesia and any stress a surgery places on his body. Like I've mentioned in the past...his body doesn't play by the rules. So, there is an understandable hesitation coming from the doctors about timing and how this could possibly play out. Originally it was discussed that we could have the surgery as an outpatient procedure and go home the same day, as long as he was stable. Now, it doesn't sound as if  that plan will be in effect.

After finishing our appointment with the surgeon we hurried ourselves to another appointment at a different location with a new-to-us neurologist. We initially met this doctor while inpatient during one of our several stays this past winter. He is new to the hospital, though not new to medicine. We've been told of his upcoming arrival and it's been mentioned that we should start seeing him. After our meeting in the hospital we decided it was appropriate to add him to Wyatt's medical team. He's very knowledgeable in the field of medicine that we need him to be and willing to jump in and guide the team in the area of his specialty. After our hour long appointment talking about our son's health, Dr. M had opinions and recommendations to add to his care. He would like to switch Wyatt's seizure medicine to an IV form. It's clear that Wyatt's body is not absorbing his medications appropriately as we see them drain from his J-tube hours after being given, when we must unclamp the J-tube for his comfort. His current anticonvulsant doesn't have an IV form, therefore we must switch to an alternative. In addition, he would like to include the IV form of carnitine to Wyatt's medication schedule, as well. Carnitine is often used as part of the "Mito cocktail." Wyatt was originally prescribed several of the "cocktail" components, though it was decided and recommended a few months after that we stop the prescribed supplements. It was clear he was not absorbing them through his finicky, failing gut. Not many of the choices for the cocktail are available in IV form like carnitine is. We also discussed anesthesia and surgery. Dr. M has specific recommendations following anesthesia and any surgical procedure that our boy will need, including this week's plans. The initial plan that he would prefer would be to carry out supportive measures which must be done in the PICU, though in that situation the surgeon and Wyatt's team would lose the ability to call the shots. But there is a "Plan B" that he's willing to try first and then transfer to the PICU if it doesn't work as we hope. He was emailing all of his recommendations to Dr. R, the leader of the pack, and is allowing him to take over the orders. So, I'm not sure we'll know the plan prior to arriving for surgery on Thursday. But we do know that Dr. M's plans involve staying rather than risking another crisis away from the hospital. We'll see if Dr. R is in agreement.

Today was slightly more low key than yesterday. Jilly had a speech evaluation first thing this morning and will receive speech services to help correct her articulation. She was excited that someone arrived at our home needing to work with her and not her brother. She sat on our wooden dining room chair, wiggly and antsy, answering each question with a smile. Wyatt happily played on the computer while Jilly took on the spotlight for the morning. Though, it wasn't long after that the nurse was knocking on our door, looking for the boy. Here to carry out the weekly assessment, blood work and dressing change.

Tomorrow we will visit the hospital, again, for a pre-op exam and discussion. I also hope to do a bit of shopping in preparation for our trip, as there will be no time left later in the week. Thursday we will be spending some portion of the day at the hospital (don't know surgery time yet). Meanwhile at home, Wyatt's electric hospital bed and new foot plates for his wheelchair (he grew) will be delivered to our home. Along with a home visit from our home health care company's respiratory therapist to check his respiratory equipment and deliver more oxygen tanks. I believe Nanny (my Mother) will be juggling the littlest of the bunch, the home visits and deliveries, as we navigate the hospital once again.

So much to do. And hoping my spontaneous swigs of cough medicine will start working as advertised.

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1 comment:

  1. Praying things go smoothly with the broviac. And everything goes well so you can go on your trip!