Monthly Archives: January 2011

glimpses of normal

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Today was Mateo’s second birthday, and tomorrow Diego turns 4. What a wild year it has been…

After 5 or 6 weeks back home from the hospital things feel like they are approaching normal. Diego’s hair is growing back in thick and dirty blond, and is now about a half inch long. He has been doing much much better, and every so often I get a glimpse of what our lives used to look like.

Our daily routine includes putting Diego on the feeding tube for an hour after breakfast before I drop they boys off at preschool. That additional hour delay at home seems to create more separation anxiety on the boys’ part, but there isn’t any other way to keep up with the supplemental feeding. On their days off from preschool I supplement after lunch as well, and a small boost after dinner. His appetite is slowing improving, and cutting the feeds at night seem to help with his sleep and overall health. Giving him the required caloric boost without night feedings is a challenge though. We just have to go at a slower pace. He made it to 31 pounds the other night, so that was a big achievement. We seem to be able to only get max gain of half a pound per week, so with our goal of 33 pounds we will perhaps have the feeding tube another month. He is on antibiotics through May to protect from a rare bug that he is more prone to post chemo. And, we still have daily and weekly Broviac maintenance until the port is taken out after another clear CT scan, in March. So all of these things are pretty much a daily reminder that things are not quite back to normal.

Diego has been welcomed back at preschool with open arms. He seems to be quite popular there and kids often call out his name when he arrives. It seems that he has settled right back into his little friendships. Some days he wants me to stay with him all day, but when I come to pick him up he rarely is ready go go home.

I keep thinking that it’s amazing how long it takes for me to recover emotionally from these hospital stays. Each time, it’s probably a few months before I feel like I’m myself again. Each time I come back to a pile of laundry and mail that will probably take me months to sort through. And emotionally I feel I’ve got a lot of baggage to deal with as well. I’ve been thinking that at times it feels like we are trying to rebuild our lives on shaky ground, much like living on a fault line. We know something could happen again, but we have to trick ourselves in to believing that it won’t. But for the most part I’m feeling good and optimistic that it really will work out okay. We are owed a happy ending after all we have been through. It feels like our time now.

new year

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We managed to pull of our holiday prep within the week or so that Diego was back. It was probably one of the best Christmases ever, not without some meltdowns and tantrums but it felt so good to finally have the family back home.

We’ve been home about 3 weeks from the hospital, and have had some ups and downs. The boys started preschool last week. Diego’s appetite has not really come back and I’ve had to cut the tube feeding at night. It was causing him a lot of pain/discomfort at night, so he has lost weight again. I’ve in fact had some concerns that the surgery has created more adhesions and more problems and that he is being set up for another obstruction. To be honest, last week was really a tough week, despite appearances of everything getting back to normal. 

Erich and I went to Diego’s off treatment conference on Tuesday, which was also his first day back at school. We juggled around schedules a bit to make it on my day off on Wednesday but when I discovered a walnut sized protrusion near Diego’s belly button on Monday night, we decided to bring him in earlier. Diego’s doctor thought it was an umbilical hernia, but it was gone within 24 hours. We met with the surgeon and had an ultrasound but nothing was there the next day. We still don’t know what it was. 

Either way, Diego seems to be improving now. The scare with the hernia, night pain, constipation and some vomiting is still very fresh in our minds. Last week I tried to just drop Diego off at preschool everyday like everything was okay, but I was truthfully on pins and needles all week. Two months off treatment and we are still on this roller coaster ride. I’m not so worried about the cancer coming back, at least at this point, but the need for additional surgeries. I discussed my concern on Wednesday with the surgeon, but it again appears that there is nothing the medical community can do to prevent adhesion related small bowel obstructions. The surgeon once again told me not to worry…

Honestly, I really don’t worry when Diego is feeling well. When he is not, well, it’s pretty much impossible. I was told that it can take a while for things to “settle” post surgery and there may be some pain but it doesn’t necessarily mean that it is severe enough to cause a blockage. This made me feel a little better. But knowing that the medical community can’t really help us in prevention is quite disheartening. I keep asking the same questions in different ways but I keep getting the same answers. 

So I’ve decided to continue to be proactive and perhaps follow my instinct even more with him. If a doctor suggests something and it just doesn’t feel right, I’m just not going to do it. 

Anyway, I’m trying not to dwell on this. Diego was doing great tonight. He seems to be only interested in super bland food, so that’s all we are giving to him. Reading up on bowel surgery it may take the body as much as 6 months to recover. And he has been through a lot. 

I’m hoping that the new year will bring healing and health to our family. As bad as 2010 was, I am constantly reminded that it could have been so much worse. In the end i am grateful for what we have. I think this is perhaps the best way to start the year- not by looking forward or looking back but by looking within.