Wednesday, December 21, 2005

Pazel crashes

He's mid-nap, so I only have a moment. When he wakes up we're going to try to find some presents.

So where was I? Oh yes, he got moved from ICU to a surgical bed. I was looking forward to getting back to the surgical floor where we had spent the first night. There were actual walls there, some element of privacy, and a personal pump in the room so I didn't have to trek down to the NICU every few hours. The transfer didn't happen until close to midnight.

(From a hospital financial analyst I can say that this was a terrible idea, that keeping him in the ICU just another 15 minutes would have allowed the hospital to charge for the ICU day instead of a Med/Surg day which would probably mean an additional $800 for the day in reimbursement from my insurance company. But, they needed the bed for another child and operational decisions trump financial implications, although do that often enough and it's like throwing money out the window.)

Instead of moving back up to the 5th floor, they moved us to the 3rd floor which is not a good place. It was a triage area that had been turned into surgical overflow beds, which meant it did not have walls. There was basically 10 families parked around the room with only the thin curtains seperating them. I liken it to a human parking lot, although Matt didn't think it was that bad. On the other hand, he was at home with Janie while I had to sleep there. It seemed like each family had their TV on, and all the babies or kids were crying, maybe because this midnight TV watching was keeping them up. Meanwhile, some poor kid was throwing up a few beds over, and the monitors for the patient next to us kept going off because they had been set to an adult setting instead of a baby's. And I had to use the public bathroom that seemed miles away, and the pump in the NICU, another bunch of miles away. And my baby had just gotten out of the ICU, was swollen so much he was not recognizable, was still not awake most of the time, was still very congested, and heavily medicated. Add to this my fear of him contracting RSV and/or a hospital infection like he did when he was in the NICU.

So I cracked. I didn't get angry because it wouldn't do any good. And although the nurses tried to get me to talk about it, they didn't understand. They figured I was tired and emotional. That's true, but up until this point I had been able to keep it all in check. I had been riding the wave, living in that particular moment and no other. So I wasn't concentrating too much on the big picture, just the little details. Are his heart rates okay? Is he in any pain? Did that nurse wash her hands? Is his oxygen dropping? Is the swelling going down? But now, the despair kind of overtook me. I couldn't sleep. I knew there were wonderful rooms upstairs. They told me they were full upstairs. But mainly they told me that Jack's surgeon had made a specific order for him to be placed on the 3rd floor, which they said is really unusual since most of the time they only keep people there who are staying for a night, not a week. I couldn't see spending my time with him in this area. Although the nurses were nice, and the space was clean, it seemed very third world for all of these families and their hurt children to be in one room to stay.

And while I had been very positive and very stable all this time, this third foor space finally broke me. And I couldn't stop the tears. And I couldn't get my mind out of the dark hole. Like I had tripped into some hidden booby trap that no one else could see.

Of course now he's awake. I'm sorry, I'm going to run again. I'll be back again soon.

Saturday, December 17, 2005

We're Home!

All is well.

Jack was admitted a week ago Monday. I think I cried worse than him while holding him down for the IV. The nose tube took a few tries. Flushing of his system was messy, but went fine. The nurse said that we'd be doing a lot of bag changes as we'll be putting in so much liquid that we won't be able to empty it quick enough, plus he will be too wet to have bags stick well. Thankfully I had done my homework and had read the best way to do it. I asked for a foley catheter to be hooked up to the end of his bag (which has a spout) so as we poured all this tons of liquid down his nose tube, it would eventually all pour out his bag, down the catheter tube and into the catheter bag. We still had two bag changes (once with me being drenched from chest to knees because Jack and I had fallen asleep while a leak occurred), but much better than what they had suggested.

The bad part was cutting him off of food. He was on a clear liquid diet (no breastmilk) from noon to midnight. He got his first taste of apple juice which he found to be a great replacement. When we cut him off of all liquids at midnight, he got angry and screamed and fought, occasionally wearing himself out to nap, but waking again upset. This went on for 11 hours. I asked the resident if he could have some meds to help him relax or feel better and she said no. "So what can we do?" "Comfort him." Gee, hadn't thought of that. Thanks b8tch. As they said from Boogie Nights, "That's not MP. That's YP."

Surgery was Tuesday. I think it would have been much harder to let him go except that they gave him some meds to make the transition easier. Basically, it made him drunk-like. He was smiling, laughing, chuckling at our stupid attempts of humor. (Say to a baby on drugs, "Whassssaaaa" and he'll give a full belly laugh.) When I handed him over, he was smiling and happy and so were we. I had been told originally that it would be from 4-6 hours. When we brought him in at 11, we were told that it would be done by dinner. We got our pager and went down to the cafeteria to wait. When 4 hours passed, we didn't think anything of it. When 6 hours passed, family started calling our cell phone to see how it went, but he wasn't out yet. When 7 hours passed, I started imagining the worst. He was on the table and they were trying to revive him. At 8 1/2 hours, we were unable to speak. With no updates from the operating room, as much as we didn't want to interrupt them, we set off on our way to find out what was going on. Part way there we ran into his surgeon, walking towards us with his gown flying behind him like a cape, eyes tired, serious look on his face. "Fine, everything went fine." Thank you God. We eventually learned that the surgery took longer because of the extent of his Hirschsprung's is more than usual. After this surgery he has effectively only 25% of his large intestine.

We went to the recovery room. They were having troubles waking him, although he was okay. They want him to wake up enough to try to take out the ventilator tube. I couldn't help but think that the 11 hours of screaming from no liquids was what had wore him out. To help strengthen him, they gave him some blood. (Somewhere out there is a stranger who donated blood, maybe at work, maybe at the blood center, maybe at a drive somewhere, that went to my son. Thank you.) Eventually he started waking up a little bit more. At 10 hours after the surgery, he was moved into the PICU (pediatric intensive care unit).

The PICU is set up with many beds with no walls seperating them and a nurses station in the middle. It looked a lot like the NICU except the beds were some cribs like for Jack, and some were beds with kids in them. There was also a lot more activity than in the NICU, with more people who were very busy at all hours. Jack didn't require any help with breathing, just monitoring his vitals and keeping his pain under control. I slept that night in the fold out chair next to his crib, with all the lights of the NICU on, and everyone working around me. You wouldn't think it would be possible to sleep under those conditions, but believe me, when you're that tired and relieved, you can sleep anywhere. I woke up at 5, suddenly aware of all the activity, that I had fallen asleep in a public area, a work area.

He was in the PICU for two days. during that time he was very swollen. He looked huge. His eye lids were so swollen he couldn't open them. They looked like he had been punched, except the color was fine. On his second day, he would crack them open then lift his chin to try to peer out the bottom. He was so full of water that his weight had gone from 8kg (17.6 lbs) to 9.5kg (21 lbs). It's a side effect from the surgery and anesthesia. He was barely recognizable. He looked a lot like Janie when she was a chubby baby, and nothing like his usual skinny self. While he was in the PICU he had one or two problems with his oxygen dropping, but those were fixed with some oxygen. He was also very congested as his lungs got "floppy" from the anesthesia and laying down. We would try to get him up to have him cough, which sounded terrible. He also had some albuterol since he developed a wheeze. All in all, he was doing fine.

I'm going to have to continue this later. He just woke up, and Matt and Jamie just got back from Christmas shopping. Speaking of which, you'd never believe how behind I am.

Monday, December 05, 2005


Jack's date has come. There was a cancellation so Jack is in. When I got the call, my stomach fell and I almost threw up. Yes, I wanted a December surgery, but that's easier to say when the surgery date isn't set and seems still far off.

Today, I guess I can say today as it's past midnight, we will call at 8 and they will tell us what time to bring him in. They will give him an IV, probably take blood for tests, and then they will most likely give him a tube in his nose to start administering a liquid to clean out his system. He'll be admitted and not allowed to eat. In other words, it will be a horrible day. Horrible.

Tomorrow, Tuesday morning, he will have surgery. They will take out half his large intestine and hook up the good part down to his rectum. They will take out his colostomy. Then he will stay in the hospital for probably a week as we get him to eat and hopefully poop. The pain meds slow the digestive system, so there's a trade-off between pain and speed.

And I don't want to do any of it.

I want him to get the surgery. I would love to stop using the bags and get him as normal as possible.

I don't want him to be in any pain. I don't want to put him in any danger. I don't want him to get scared or uncomfortable.

And while I know that this phase we're in with the colostomy and bag changes and all is difficult, it is our reality and we've become accustomed to it. I hate it, but I can do it. This surgery will end that, which is good. On the other hand, the surgery will not make him suddenly perfect. He will not be normal. He will be missing half his colon. He will suffer from severe diaper rash and will most likely need suppositories and such as his system learns.

He's part of me. Somedays, as he clings to me, my little spider monkey, that attachment is so acute. I can't get a free second. When Matt is feeding him, if I walk by he starts moving his hands and kicking his feet, pleading with his eyes and whining. We're still sleeping together and breast feeding. He's my little baby and he needs me. And I kiss his cheek and put my hand over his head, and I need him. He has the sweetest smell, and softest skin. And his little face is just a miniature of my husband combined with a male version of our daughter.

I plan on trying to stay in the hospital with him as much as Janie will let me. We've got Matt's parents visiting to help with her. I can't be away from her either, but this is a shorter stay with a more definitive ending time than when he was in the NICU. He's also more aware of me and his surroundings. He's going to be scared if he wakes up without me. And he's going to be looking for me specifically. I will not let him wake up without me.

I hope that someday this will all be some interesting story we tell him about how he got those scars on his belly. I'm looking forward to a day in the near future when I can blow raspberries on his tummy. And when he can wear two piece outfits like any other boy. And I want to give all the rest of his bag supplies away to the ostomy nurse to give to other patients.

My little baby. Sleeping in his polar pals zip up jammies, arms spread-out, lips making little sucky faces, chest rising and falling with each breath, dreaming of boobies, kitties and his big sister. You won't have to endure any more bag changes. I know the bags bother you by how you're always trying to grab and rip them off of you. They will soon be history. It will not be easy, but it will be for the best. Know I'm by your side, and we all love you. You're going to be okay. I love you.