Belated Update- Ups and Downs

I have been meaning to update since we were released from the hospital on Sunday (last Sunday, not today) with Owen. Since my last update he has had a lot of ups and downs, hence my reluctance and lack of time to post. I think I'll do a bullet-point update. Otherwise this post would be long enough to be published as a novel. I'm also a little foggy on the timeline of much of what has gone on. Here goes:

Tuesday:
- Owen's was made NPO (nothing by mouth) because of his extremely distended abdomen. His belly felt as hard as that of a woman in her 7th month of pregnancy.

- Owen was taken for an abdominal x-ray to make sure the distended abdomen was merely a result of built up gas and extremely slow bowels. I was very nervous that it was something more serious, but alas the Little Man was full of gas.

- Owen's pulse-ox level crashed and went down to 75 at one point. He was also having really funky sounding breathing and seamed to be in respiratory distress. Three nurses including a PICU nurse came to listen to him, and eventually respiratory was called. They thought his lungs sounded clear, it sounded more upper-respiratory. The still ordered an epi breathing treatment PRN. Dr. Gazak was called and decided he would feel most comfortable having one of the pediatric intensivists on the floor come examine him. Dr. Pat came in and ordered a steroid to help with the post-surgery swelling in his breathing tube due to being intubated. She also ordered a chest x-ray to rule out pneumonia. He sounded really croupy and it was very worrisome. We were able to avoid the epi treatment, the steroid helped and the x-ray was negative for pneumonia. The result was watch and wait. And when I mean watch, I was obsessed with watching his pulse-ox and listening to his breathing.

Wednesday:

-Owen's pain was just not under control. He was receiving IV doses of Morphine every 3 hours. At about the 2 hour 15 minute mark he would start shaking in pain. Not good. Dr. Gazak decided that since his epidural was still in to administer numbing medicine, it would be a good idea to switch his pain control to Phentynal through his epidural. That helped A LOT.

-Owen finally slept a bit more comfortably. This is of course besides the nurses and techs constantly coming in to administer antibiotics and check his vitals. I finally started forbidding the techs from waking him to take his temperature.

Thursday:

-Owen is still NPO. I hate it. It is so awful not being able to feed him. He just looks so sad and pitiful laying in his crib.

-Owen's cough was persisting and he had spiked a fever of about 102. He was swabbed for the flu, which turned out to be negative. Of course we were informed that the test was only 56% accurate. What?!? He was put on droplet precaution just in case. Any nurse that came into the room was to suit up in a plastic gown, gloves and a face mask. Some did and some didn't. Since he was on two very strong antibiotics the doctors said he most likely had some other sort of viral infection. Again, watch and wait.

-Late in the day Owen was given the go ahead to start drinking clear liquids. He started drinking Pedialyte and luckily kept it down. After the first 2 bottles (2 oz. each) he didn't have much interest, probably because he was receiving so much fluid through his IV. They turned the drip down to see if they couldn't make him feel more hungry and thirsty.

-Owen was taken off of his strong antibiotic and switched to his normal prophylactic medicine PO, only he had to take it twice a day instead of once.

-Owen chowed down on some yogurt, one of his favorite foods. It was so good to see him eat.

Thursday:

-In the morning an anesthesiologist came to remove his epidural. I was super anxious because he had been doing so well with the pain medication through the epidural. On the other hand, they do not send babies home with needles in their backs, so it was a step in the right direction.

-Owen had a rough time with withdrawal from the Phentynal and the switch to oral pain medicine.

-Owen slept better than he had. At one point he slept through a scheduled dose of Loritab and the nurse didn't bring it for him. When he woke up he was in agony. That was when we decided he was to receive a dose every 4 hours no matter what until his pain was under control. It was important to get him over the hump.

Friday and Saturday were pretty much more of the same, with progress here and there. Owen was a bit more active, and his eating and drinking began to pick up. It was still not at a normal level, but that was to be expected. We were hopeful that we would be released on Saturday. When Dr. Gazak came to see us he was very pleased with how Owen was doing, but still not comfortable sending him home. He wanted to be cautious and make sure he was ready. He wanted another day to make sure no further complications crept up. He wanted him to be closer to his normal eating and drinking routine. Of course Wes and I want what is best for Owen and fully trust Dr. Gazak, but on the other hand we really wanted to go home. The four walls of that hospital room were really starting to close in on us. We missed Carter and we really were just crushed.

Sunday:

-Dr. Gazak came to see Owen after church, sending everyones' best for him. He also authorized discharge! We left the hospital around 12:30.

-We came home and got to see Carter. It was so great to see to see him. We all missed each other so much. Unfortunately he had come down with something, fever cough etc.

-Owen was thrilled to be home and wasted no time showing everyone how he could run around and play. He was especially happy to see his big brother. He also tired quickly and we had a hard time getting him to take it easy.

Monday:

-I took Carter to the pediatrician. He was swabbed for the flu, which was negative. The doctor thought he had what is called parainfluenza. It is basically a flu-like virus with muted symptoms and the fever isn't as high. I was glad it wasn't the flu, but not so glad that my Big Guy couldn't be given anything to make him feel better. Motrin and cough medicine became our best friends. Carter however did not want to befriend them, especially the cough medicine. That stuff does taste pretty nasty.

The rest of the week:

-Each day was a battle to get both boys to drink. Carter came around more quickly than Owen did. I can't tell you how many times I was on the phone with the Judy talking to her about how many wet diapers Owen had. That woman is a saint, though she is probably getting tired of constantly having to talk this crazy lady out of losing her mind.

Wednesday:

-Owen had his super pubic tube removed in Dr. Gazak's office. I will spare you the details of how that was done. It was gross and I had to look away at the end. Right before Dr. Gazak went to take it out he warned us that it might not come out if the dissolvable stitch that held it in his bladder had not dissolved, it would not come out and we would have to come back on Friday. Thankfully that didn't happen. I was thrilled to get that thing out. No more double diapering, and another step in the right direction. Owen wasn't so happy about it first because obviously it hurt. He was left with a hole where the tube was, just below his belly button where his vesicostomy had been. Dr. Gazak said it would close on its own since the bladder is a muscle and would atrophy to close the hole. This was another time that I found myself looking at him saying "whatever you say". Sure enough the whole that was about the size of a pen had shrunk to half the size by the next morning.

-About 2 hours after the tube removal Owen spiked a 102 degree fever. I was very concerned. Wes hypothesized that it was from having the tube removed; his body's reaction from having a foreign body removed. I was hopeful that he was right.

Thursday:

-Owen was extremely lethargic and out of sorts. After calling Judy to ask her about the probability of developing a fever after having a super pubic tube removed (very likely) and being told that getting a urine sample wouldn't be a bad idea, I took Owen to the pediatrician. She did a thorough physical exam and couldn't find anything really wrong. She took a urine sample (luckily not having to cath him) by just pushing on his belly. He actually peed on her, I was so proud! She also decided to change his antibiotic to a stronger one used to treat UTIs in case he did have one. I of course made her call Dr. Gazak and make sure he was ok with it. After all he is the go to guy for all things urinary. He agreed.

I got a call later in the day saying that his urine sample was positive for a UTI. I was crushed, worried, overwhelmed. My first thought was, "oh no what if this means the surgery didn't work." Like the crazy woman that I am, I called Judy to tell her and ask if we should be worried that the surgery didn't work. She said it is not at all uncommon to develop a UTI after the type of surgery Owen had. Also, he still has the stints in place, so as she said he still has a highway for infection. She said the switch to the new antibiotic was a good proactive step. She was going to talk to Dr. Gazak and see if there was anything else he wanted to do and call me back only if there were any changes. No call back! Also no more fevers. They sent the culture off for growth. We should know more on Monday about the type of infection and if the antibiotic that they have him on is going to work. It does seem to be doing its job (knock on wood).

Now:

-Owen is eating and drinking much better. We have been able to cut back the dosage of his pain medicine and even switch to Motrin for some of the doses. He is still recovering and having some pain, but is doing a lot better.

-Carter is feeling a lot better. No more fever, and hardly coughing at all. Now he is just a cooped up almost-four-year-old trying to drive Mama and Daddy up the wall.

-I went to Urgent Care yesterday after taking a turn for the worse. High fever, cough, congestion, extreme aches and exhaustion. You guessed it, I have the swine flu. Really? Just what I need. Oink! I am on Tamiflu. I still feel wretched. I am supposed to stay 6 feet away from the kids. It is especially worrisome if Owen would get it, he has had enough complications. Also, we are pretty sure Carter already had it when he had the flu in April. Still, I have a really cute pig flu mask. Wes has been wonderful taking care of the kids and making sure I get my rest. Thank you husband!