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More about this later, but yes we are home!

Confounding the Docs

After three days of clear chest x-rays after they clamped the right chest tube, the docotrs made the decision to remove it yesterday. Let me tell you, there is nothing comfortable about that procedure. The chest tube is like a garden hose, and about 16 inches of it is coiled up inside the chest cavity. When they pull it, it feel like someone is pulling your insides out (per Dalton of course). Nevertheless, this seemed to be a pretty good indication that he would be coming home soon.

Sigh...

That was until they read the latest chest x-ray and discovered that there was fluid building up in the LEFT side of the chest cavity. This seems to have completely confounded the docs - no mention of what could be causing it. However, they did say that if it doesn't resolve by today, they'll have to reinsert a tube on that side in order to drain it. We remain positive and joyful, but we are definitely struggling with patience.

A dear friend of ours had her baby 9 weeks early, and he has been in NICU since 12/31. It's interesting, but he and Dalton seem to both be struggling with fluid issues of an unknown origin. Yet, they (our friends) have been playing the patience game for three weeks longer than we have. Somehow, they have been able to sustain, but please pray for them and their baby, Malachi. We all remain confident about healing but need strength and patience for the road.

FLAKE!

That's me. A bit flakey these days. Yes, I realize I've been a bit flakey this week. Grandpa died on Thursday Feb. 2nd, so I've been a bit preoccupied trying to make funeral arrangements and deal with the logistics involved with dying. Plus, the costs incurred from storing his stuff in a vacant apartment are astronomical, so I've had to go through his personal things sooner rather than later. For those of you who don't know, I am Grandpa's only grandchild and next of kin, so all of the logistics fall to me. I am happy to do it; Grandpa has given me so much. Nevertheless, it adds to the sheer quantity of things I am trying to juggle.

aNYWAYS...Dalton is out of ICU!!! He has been for almost a week. He is feeling pretty good (up for visitors for those of you who are local), but we are now playing the waiting game.

Not much has changed regaring the leak, and they can't send him home until it has resolved. The doctors decided to "bite the bullet" today and clamp his chest tube off in the hope that will encourage healing. However, there doesn't seem to be a lot of certainty about that and everyone appears to be a bit perturbed about the fact that he is still leaking chyle. He will likely be there through at least Monday, and who knows after that.

His wound is also healing slowly, most likely because of the radiation treatments. It is big, and open, and deep, and I am having a hard time with the idea of being responsible for the dressing changes. The other night, I had to leave the room because I started to have an anxiety attack when they pulled out the gauze. Please pray for me to have the strength and ability to do what needs to be done. I suspect it would be even harder for Dalton to do the dressing changes, because it is fairly disfiguring while it heals. I want to spare him that pain, but will need some supernatural support in order to do so.

Even with all that has happened, Dalton and I are in really good spirits. We are truly living day to day, and that is finally more pleasurable than dreaming of the future or bemoaning the past. Evenings spent listening to Sam Cooke or Nine Black Alps hold more joy than vacations spent dreaming of how things will eventually be. It's hard to explain, but today really is enough.

I will try to to do better with my blogging so that no one has to wonder what is happening. And, if you'd like to come by and visit Dalton while we wait, just give me a call at 213-422-9439. I'm trying to stagger the visits so that he can rest in between.

Cheers,
Tricia

Jell-o and a Leak

I have an ongoing conversation with God. It is the most regular prayer that I have these days. It is scattered and unpredictable, usually involving thanks for resolving the cancer and questions about why recovery from the surgery is so wrought with complications and setbacks.

The past two days have brought both elation and gripping fear. Yesterday, Dalton convinced the doctors to allow him to have a "swallow test". After passing it with flying colors and proving that his hardware wasn't leaking, Dalton received a tray of chicken broth, lime jell-o, cranberry juice, and a cherry Popsicle. It was in his own words, the best juice he has ever had. Apparently, it doesn't feel much different to swallow without an esophagus, but he has to remain upright for at least an hour after the last bite - a small price to pay for being able to teach Iain to ride a bike. Unfortunately, that joy quickly turned to fear as the liquid that was draining out of the chest tube turned to chyle - a word that I did not want to hear.

Chyle indicates that there is indeed a thoracic duct leak, and I spent much of today trying to calm my nerves about what that meant. When the possibility of a thoracic duct leak first presented itself on post-op day 2, I furiously googled my way to an article that indicated a very high mortality rate for patients who were treated conservatively rather than aggressively. For me, that meant that either Dalton would have to be opened back up again or face a 50% chance of dying. Between that and the realization that I will soon be the one having to pack his open incision with gauze, I was desperately wishing that I had left my Zanax in my purse rather than the medicine cabinet at home. I don't do dying husbands and I don't do open wounds (not that there is even a comparison!). The wound is like a fifty-cent piece sized 1/2 inch deep hole smack in the middle of Dalton's chest. Since it became infected, they had to remove the outside sutures and let it heal from the inside out. Dr. Demeester's nurse informed me yesterday that it would be my job to clean and dress it every day until that happened, and I immediately felt my heart begin to race and my stomach began to churn. Other people's pain does that to me, and although my mother-in-law offered to do it (three times a day), that just served to make me more determined. As much help as she has been, my husband does not need his mommy to take care of his ouwies any more. His wife will just have to learn to deal.

As for the thoracic duct leak, my concerns seem to be a bit excessive. While he will certainly keep an eye on it, the surgeon is convinced that it will heal itself. He had read the same study I had and never understood how they witnessed such differing scenarios as those he had seen. He assured me that although he had seen this sort of thing at least 50 times, he hadn't lost anyone yet. And, they only rarely had to go back in to correct it. Instead, it just means that Dalton will have to have the chest tube left in longer than they had hoped, and that will prolong his stay. O, once again, patience seems to be the lesson of the day.

So, to summarize, Dalton is on a clear liquid diet - yeah! But, he is also stuck in the hospital until the leak is resolved. On a most excellent note, the fever has stayed away.

Coming soon... a look at Dalton's esophagus. That's right, I got to see the whole thing after it had been removed. FREAKY!