Post-Op Day 31

Hello! Sorry for the lack of posts for the past few days. I was out of town (and had a fabulous time) and Dan said he was too exhausted after chasing Drew around on his bike with the IV pole all day.

So not much has been going on around here. Just IV antibiotics, dressing changes twice a day and figuring out ways to pass the time. We tried to get into the Ronald McDonald House, but have heard that it's nearly impossible, so we are staying at a hotel at a discounted rate. We were staying at Kathy's house, but since Scott is home from college and is working we thought he should have his room back. And now he's sick, so it's a good thing we have another place to stay. Plus we are keeping Ava with us more and trying to re-establish somewhat of a routine for her.

Today Drew got to take his first real bath in a month! He had been getting sponge baths in his bed, but his incision is healed enough now that he can take a bath in waist deep water. We did have to rig something up to protect his PICC line from getting wet, but I forgot to bring my camera in the bathroom. I'll try to remember next time. For now I'll leave you with a picture of Ava's nap in Drew's room today. It only lasted a half hour, so you can imagine how she was the rest of the day...

Opinion from Stanford

Dr. Hanley called on Friday while I was driving down to So Cal. Dan spoke with him and relayed this information.

1. He thinks it is clear that we should NOT have the Fontan.
2. He would recommend a 1 1/2 ventricle repair, which means he would leave the SVC attached to the pulmonary artery (the Glenn), place a patch near the VSD to make Drew's heart septated, and also attach an external conduit from the right ventricle to the pulmonary artery to restore a normal pattern of bloodflow.
3. It is not clear to him why Drew's surgeon did a Norwood in the beginning and he never would have gone that route.

It's good news that there is agreement between the two surgeons on what type of surgery should be done now. That makes it a little easier. The hard part is hearing that Drew never should have had a Norwood to begin with, and it might have been possible for him to have only one surgery. It sounds like both surgeons are saying now that that's been done there is no going back, and that is heartbreaking. I put another call in to Dr. Hanley to ask him why he wouldn't have done a Norwood, because it might make a difference in whether or not we trust his orignal surgeon to do the surgery this time. I am waiting for a call back. So for right now we are considering both UCSF and Stanford and need to do a little more digging before we have all the info we need. I would still like to talk to our surgeon at UCSF personally and get his opinion on things.

Home

Today we had our favorite nurse, Michelle, taking care of Drew. If she is working when we are there, she is his nurse. We love her! I thank her for getting us out of there today and being such a great advocate for Drew. The doctors wanted to test his calcium level which would require another stick. She said no. He doesn't need it. They really pushed the issue so she said she would try to get it out of his IV as long as they switched him to oral antibiotics. She didn't want to risk losing the IV if they were going to make her place another one for IV antibiotics. So they said ok. She tried to get blood out of the line and couldn't get any. The Doctors again wanted to stick him. She said no, there is no reason to do that. Call endocrine (who follows his calcium) and ask them if they need it checked. So they did and endocrine said no, its fine. She totally saved him from another traumatizing poke. As it is the kid is terrified of band-aids. Some kids think they make you feel better, he knows he gets them after they are done poking around in his veins. He seriously cries when he sees them. He cried and shouted "I didn't want to!" every time the nurse even approached his IV.

Well, since Michelle got him switched to oral antibiotics and he hadn't had a fever yet today there was no reason we couldn't give him antibiotics at home. We were discharged around 3:30 and after a quick stop at the pharmacy to pick up his meds we are home. Yay! We have our whole family together in one place! Drew fell asleep in the car on the way after saying "I'm not tired."He and Dan are napping right now and I am hanging out with Ava. We've got a friend bringing dinner over and we are planning on just having a mellow night and going to bed early. We've got a follow up appointment tomorrow with our pediatrician and hopefully he'll just keep getting better each day. He was in a much better mood today and we visited the playroom, went on a wagon ride to see the fish in the hospital lobby, and played cars. He is excited to come home and play with his train table.

Oh, and in case you were wondering what they decided made him sick, the doctors are going with bacterial pneumonia. Dan and I are not sure if we buy it, but it doesn't really matter as long as he is getting better and he is home.

Monday Morning

After I left last night Drew did spike another fever of 102. They had to draw blood for more cultures. Dan says they found the best nurse on the unit to do it. I asked if he believed them and he said yes. He said it took a long time for them to look, but once they started they got it quickly. They also got a roommate in last night but Dan says they were quiet once he got admitted and everyone slept well. Haven't heard anything new yet this morning, but we'll keep you posted.

I've got a friend coming to watch Ava this morning at 9:30. I've used my morning to catch up on household chores that were being neglected. I'm also going to give Ava a bath because I can't remember the last time she had one.

Thanks to everyone who has been helping us out with food and babysitting. We couldn't do it without you! And thank you so much for your words of encouragement and prayers. It's just what I need!

No News

When I got to the hospital this morning Drew just didn't look good to me. Yesterday when he was free of the fever he was looking and acting normal, but today he just looked sicker. He spent most of the morning laying in bed watching movies. He slept most of the afternoon. When he woke up around 5:30 he looked like he was feeling a little better and he ate all the macaroni and cheese that our friends brought him for dinner. He's been coughing more now, but still not as much as usual when he has pneumonia. The fever came back last night around 4 am and again this afternoon. Both times in the 102 range. There was talk of possibly sending us home today, but with the fevers coming back they wanted Drew to stay another night. If he spikes another fever tonight they are going to want to do more blood cultures. The ones they did last night haven't shown anything yet, so that is a good sign. His oxygen levels are still normal, so we still don't really know what the problem is.

I came home around 6:30 so I could spend a little time with Ava before bed. I know she is too young to understand, but I just feel horrible leaving her so last minute with no mommy or daddy for days at a time. I had a lot of fun playing with her before bed and she helped to lift my spirits a little.

Speaking of which, I did pretty well today except for a brief moment when I went to the gift shop to get Drew a present. I let my mind run away with me and got really scared. I was scared he had some serious infection that might kill him. I wondered if we'd be able to take him home. I know that seems extreme after just a fever, but it happens. Things can change so quickly for these kids. So for other heart moms reading this, do you do that? And if you don't do that, how do you avoid it? I let myself be sad for a bit then got myself together and went back to his room. And when I got there his fever had gone down, thank God.

So Dan's spending the night with him again tonight and I'll relieve him in the morning. We haven't had a roommate all day so hopefully they will both be able to get some good sleep tonight.

Drew Admitted to UCDMC

We've had a long day and I am exhausted. We took Drew to the ER this afternoon because he's had a high fever (it got up to 103.1). Nine hours later he was finally admitted to his own room on the pediatric floor. Looks like another pneumonia, but I think it was borderline on admitting us. I'll write more tomorrow, but please keep us in your thoughts and prayers.

We're Home!

Drew was discharged this morning around 11 a.m. He was very excited to come home! He kept saying, "Can I go home to Drew's house? Can I play?" He practically ran out of the unit! He and Daddy both slept well last night but are glad to be sleeping in their own beds tonight. The blood cultures came back negative for a bacterial infection. This is good and bad news. We're glad there is no infection, but that means the IV antibiotics weren't helping him to get better and so the torture of getting the IV in was not really necessary. Of course, the doctors wanted to be careful and start treating him in case of a bacterial infection, but as a mother I wish there was something else they could do.

For some reason I was feeling sad this morning. I didn't really know why, since I knew that Drew would be coming home today. After thinking about it for a while I think I have the answer. When things are crazy I just go an autopilot, dealing with the situation, being there for Drew, arranging childcare for Ava, making plans, feeling somewhat in control. I think once the danger has passed and things are OK the feelings I have been denying come flooding back all at once. It's hard to have your child in the hospital, even when it seems routine. It's hard to split up the days and nights and be away from my husband. It's horrible to watch Drew in pain and scared and know that I can't make it stop. I can only try and make it a little more bearable. And even the days leading up to his hospitalization were exhausting. Worrying really takes a lot out of you!

I think we are all going to try and take it easy for the next couple of days. We all have to adjust to being back at home and get used to our old routines. The laundry can wait a few more days...After Drew's hospitalization last May he was not himself for a few days after we came home. I think he is getting old enough that he needs some time to process what happened, and he doesn't know how to express his feelings. And if I am feeling sad today even though he is home with us, he must be having some feelings that need to be dealt with as well. I am praying that we will all have extra patience for each other.

Bye hospital!

Drew is glad to see Ava

Feeling Better

Medical Stuff

• The IV came out last night. Dan said they came in with flashlights around 3 a.m. with the intent to replace it. He told them "You're not doing that tonight" and they left! Good job Daddy!


• The doctors were concerned over Drew's blood pressure. They thought it was too low in his arms and too high in his legs. They wanted to stop his lisinopril, but we objected until they talked to cardiology. Cardiology said its no big deal and to continue his meds.


• His oxygen sats were sitting in the mid 70s even while on oxygen, which is worse than yesterday. It turned out the pulse ox wasn't positioned correctly on his big toe and when the nurse moved it he's holding steady around 83-84.


• Since his sats seem to be holding they've turned off the oxygen. If he can stay above 80 he won't need oxygen anymore and we're one step closer to going home.


• The doctors want to treat him with antibiotics for 48 hours, until those blood cultures come back (around midnight tonight). Since we've lost the IV and I don't want to traumatize him by trying to get it in again, he'll be getting his antibiotics intramuscularly (that means shots). I figure they won't get his IV in less than two pokes anyway, shots are quick, and he gets over them pretty quickly. They even agreed to do them early (they were scheduled for midnight) so that he can go to bed afterward.

Other Stuff

• I brought Ava with me to see Drew this morning. I think they were happy to see each other, until Ava started touching his things. But he did share some goldfish with her.


• I convinced Drew to take a bath this morning. He didn't really want to at first, but once he was in there he had fun splashing and started to act more like himself.


• After he had some clean jammies on we tried to go to the playroom, but its closed. :( So we went for a walk instead, with me pulling the oxygen tank behind us. Then he found one of those ride in cars and we took his rhino for a ride around the hospital looking for diggers (they are always doing construction around here). On our journey we found a fish tank and Drew was cracking up when the fish would eat some rocks and then spit them out again.


• At lunch he ate all his pudding, most of his applesauce and a couple bites of PB&J. He also ate a bunch of goldfish this morning, and seems to be drinking enough water on his own.


• When I got hungry for lunch I loaded Drew up into a wagon with his oxygen tank and cat and took him down to the cafeteria with me. We also stopped at the gift shop and I bought him a balloon and a lollipop.


• This is Drew's first time in the hospital in a big bed. He is getting a kick out of pressing all the buttons, making his bed move up and down, turning on the lights and driving the nurses crazy by paging them every few minutes.


• Today Ava is hanging out at home with my cousins. Dan is trying to get some sleep, as he didn't have a very good night last night. We plan on the same routine tonight. He'll come back and stay with Drew tonight and I'll leave around bedtime and stay at home with Ava.


• It looks like if things continue going well we'll be going home tomorrow. Praise God!

Ava came to visit Drew. He said, "She's touching my bed."

Drew stops by the gift shop on his wagon ride

Resting at UCDMC

Drew has been getting some good rest in the hospital. Our roommate left this morning so we've had a quiet room most of the day. Drew has been content to lay in bed and watch movies all day, so I know he's not feeling good. Usually he wants to get up and play, even when he's sick. Our favorite nurse is here taking care of him. She has been his nurse nearly everytime we've been admitted to the hospital. She remembers him from when he was a little baby!

Poor Drew is not really interested in eating or drinking. He had two bowls of cheerios and some fruitsnacks so far. And a couple bites of hamburger. With much cajoling he has had one ten ounce cup of water. So we are going to be working on getting him to drink. He is still getting IV antibiotics and IV fluids and is on a little bit of oxygen (.5 L). He's maintaining his sats pretty well around 80 and even went without oxygen for about four hours. But he still gets pretty low during his coughing spells so we've turned the Os back on. The doctors want to keep him on IV antibiotics for 48 hours until they get the blood cultures back and make sure that its not a bacterial infection. They are estimating we'll go home on Monday.

We have been so blessed by our wonderful friends, Pete and Jen, who have been taking care of Ava all day. I have been with Drew all day and Dan was able to go home and get some sleep. He will be staying with Drew again tonight and I will try to go home and get Ava to bed at a decent hour tonight. Thanks for your support and continued prayers.

Drew with Mommy & Daddy in the hospital

Drew watching a movie in his bed

I'm not crazy--this kid really is sick

Drew is in the hospital with pneumonia. We took him to the ER last night because he was coughing nonstop and having trouble taking a breath. He was coughing so much he wasn't able to eat lunch or dinner. We gave him a breathing treatment, but it didn't seem to help him. When I called the nurse for the third time this week she said whatever he has is getting worse everyday and you need to take him to the ER. She had the Dr. call ahead to let them know we were coming and we loaded up the kids and drove to the UC Davis Medical Center.

I hate the ER. I hate the crowded waiting room full of sick people. I hate the people who want to chat with me when I am just concerned about making sure my son is ok. And I don't especially love the security guards on a power trip. But we found ourselves at the dreaded ER once again.

I was doubting whether or not we needed to be there. Drew was coughing less and seemed more able to breathe while we waited for triage. When they first took his O2 sats they were 75, which isn't incredibly low for him. They found us a bed in the Pediatric ER (it was in the hallway at first) and put him on some oxygen. He was NOT happy. He was very irritable, he didn't want to read books, sing songs, or play with the toys they had. And he did not want to wear the oxygen mask. He cried and whined non-stop until he had a chest x-ray two hours later. For some reason that calmed him down and the same tech we had two days ago did the x-ray. He gave Drew Thomas the Train and Lightning McQueen stickers, which I could tell made him happy.

Once the x-ray came back they were able to compare it to the x-ray from a couple days ago and said that he had an emerging pnuemonia on both sides of his lungs and would need to be admitted. Since this is his third time being hospitalized for pneumonia I wasn't really worried or upset about it. I know he'll be fine after a few days of IV antibiotics. The hard part is the IV. They tried four times before I asked for the transport team to come and do it. The Dr. kind of looked at me like I was crazy and asked if she could try once more. I didn't want to let her, but I did and she didn't get it. Poor Drew was screaming, crying, shaking, turning bright red, kicking and flailing. I started to cry too. They called the transport team, but they were out. I said we'd wait. I remember from May when Drew had rotavirus it took ten tries to get an IV in. The transport team was eventually called and they were the ones who got it in. By the time it was over he was exhausted. But they told me to ask for them next time and not wait until all his veins are shot from everyone elses attempts. Unfortunately I didn't remember until after five sticks. It took three more tries from them, but they finally got it in.

I brought Ava home and Dan stayed in the hospital with Drew. I am going back this morning to spend the day with him. Hopefully he can just have a relaxing day of playing in the playroom and watching videos. I haven't heard anything specific from the Doctors yet, but I think he will just need a few days of IV antibiotics and for his sats to come back up. Please keep our family in your prayers.

Appreciating the Mundane

The other night I was standing in my kitchen doing the dishes, AGAIN. As I was washing the dishes I started thinking about what I'd done that day and of course one of the things I do is spend time on the internet. I've been following the stories of two different families whose children are hospitalized right now. One family I know (kind of) and one family I just happened upon over the internet. And as I was thinking about them, and all that they are going through right now I realized just how lucky I was to be able to be at home doing the dishes. I'm sure both of those mothers would give anything to go back to their normal lives of cleaning the house, taking care of the kids, complaining about the chores. It's amazing how a little perspective can make you appreciate, and even wish for the mundane things in life.