Follow up appointment

I took Drew to see Dr. P today. She agrees that he looks so much better! But, he does have what appears to be an ear infection (either coming or going, she can't tell) on the right side now. So we are going to continue antibiotics for that. She is also concerned that he won't do well with another virus right after this one so we are to avoid contact with groups of kids. Boo. That is going to be hard for Drew and hard for me. No gymboree, no library time, no mom connection, no church nursery for a month! But we can do outside things, so I guess we'll be having a lot of park days and zoo trips in the next month. That will put us into the end of April. His cath is May 1 and they won't do it if he is sick within a week of the appointment, so it will actually be more like six weeks of isolation. Boo again.

Getting well at home

Drew is doing so much better now that he's home. He is hardly even coughing anymore. He's pretty much back to his usual self, constantly wanting to play trains, racetrack, cars, etc. We are getting a little cabin fever from keeping him inside and away from other kids. We have our follow up appointment with Dr. P tomorrow morning, so hopefully we will get the go-ahead to resume our normal activities. If that is the case we will be going to storytime tomorrow and gymboree on Friday.

Dan and I both got sick during our weekend stint at the hospital. Dan is feeling better already so I think I only have another day or two before I should be feeling better.

Two cute stories from yesterday:

1. Drew got to pick two presents before we left the hospital because he had to get two shots. First he picked out a little doll, and I thought, hmm, interesting choice. Then he searched for a car, but ended up with some happy meal toy. Yesterday when he woke up he saw the doll and gave it to Dan and said "open it!" Dan opened it and handed it to Drew, who said "here Ava" and gave it to her! Isn't that sweet? He used one of his presents for his sister. He is such a sweet boy!


2. At dinner I said to Dan, "Cheers to our family being home and eating dinner together." And we clinked glasses. Drew picked up on this immediately and said "Cheers, Cheers!" and slammed his cup into Dan's, nearly spilling his beer all over the table. I told him that after you clink glasses you take a sip and then he was like a tiny fraternity brother ordering us all to "take a drink!"

Ava walking with her doll

Drew giving us a smile

Cheers!

Take a Drink

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.

Heart Catheterization Scheduled

Yesterday, while I was waiting for the results of the chest x-ray at the doctor's office UCSF called to schedule our cath. We were hoping for April, but it looks like we will have our appointment on May 1. We will not be the first case of the day, which means we will likely spend the night there. I have a slight fear that they will do the cath and want to do surgery immediately and so I was hoping to avoid having the appointment so close to Ava's first birthday. My fear is not unfounded, that's what happened with his second open-heart surgery. We went in on a Tuesday, came home and got a call on Wednesday asking us to be back at UCSF Thursday morning for pre-op. I don't really think that will happen this time, but I am trying to accept the possibility. If he needs surgery right away, then he needs surgery right away and that's that. It is starting to seem so real now. I guess we're on our way.

Blue Boy

We've had another long day and I'm tired so this will be brief.

Drew had another blue episode today. It was worse than yesterday. I was about ready to take him to the ER. Right before I left for the Dr. he spiked a fever and I gave him motrin. By the time we got to the Dr. the little monkey had returned to his normal color. Even looked slightly pink. Stinker. He was purple, I swear!

But the trip was not in vain, Dr. P thinks he has croup and gave him an antibiotic right there in the office. He should be feeling better soon. Also, since he tends to desat (apparently) at the onset of a fever I am to give him motrin around the clock for the next two days. I am praying that I will not have to make a fourth trip to the Dr. this week, or else I may have to take out a loan to pay my copay.

Also did I mention that I love my Dr? Because she is the best. She called us at home tonight to check on Drew and gave us her pager number in case we need to call. I think I'll be programming that into my phone for future use. I am seriously really sad that she is leaving Sacramento. We may have to move to Temecula with her.

Long Day

OK. So the good news is that Drew is OK. He just has an ear infection! Can you believe that? A typical kid gets an ear infection and is maybe a little whiny, possibly goes to the Dr. for some antibiotics. My kid gets an ear infection and turns blue and dusky, gets a chest x-ray, and scares me half to death.

This morning I worked for a couple of hours at my old job. In my previous life I worked as a scientist at a DNA sequencing lab, and I am filling in for an employee that is going to be out of town for a few weeks. By the time they hired and trained a temp the other person would be back. So I was happy to help out since I worked there for so long and could use the extra money for my NY trip. ANYWAY, Drew looked kind of blue this morning, but really blue by the time I got home. Cardiology took their sweet time calling us back so I called Dr. P (I seriously love her) and she called me back in 15 minutes and said "How soon can you be here?" So we were off!

I was really, really scared. I've never seen him that blue. But he was acting fine. Still happy and playing and saying hi to everyone we saw. Dr. P saw him and said that he did look really blue, which made me feel vindicated that I am not just an overprotective, over-reacting mother. His sats were 73-75, which I think is a significant drop from last week. He also had a fever, which he did not have at home. And an ear infection. She gave him some tylenol and said she didn't think his fever alone would account for such a drastic color change so she ordered a chest x-ray. Which meant a short drive to the hospital, re-parking and walking to radiology which is as far away from the parking lot as you can get. The radiology technician was nice enough but he thought Drew would be able to stand perfectly still in an awkward position while he took the x-ray. Um, he's 3. He wiggles. Almost constantly. So we had to do those over again with him laying on the table.

Back to Dr. P's office! She checked his ear and his sats again and told us that his chest x-ray looked fantastic! Which was reassuring because I was sure that he had pnuemonia again (he hasn't had it yet this year) and we would be in the hospital yet again and miss my grandma's 80th birthday party this weekend. Slightly neurotic, I know. We got a prescription for some antibiotics and then we were headed to the pharmacy. You would think that's the end of the story but it's not. Because when we got the Safeway pharmacy there were quite a few police cars pulled up in front of the store. As we walked inside I saw a bunch of cops interviewing people and I thought, hmm I wonder what happened. Then I stopped dead in my tracks. The pharmacy was completely shut down. As in metal shutters. Apparently some delinquent teenagers had robbed the pharmacy forcing them to shut down for the day and NOT fill my prescription. I had to call the Dr. back and have her fax it to another pharmacy. Sheesh!
Needless to say while I was there I bought myself some treats: a take and bake pizza, skinny cow ice cream sandwiches and some smirnoff ice. And now my treats and I are going to relax with Survivor and Next Top Model.

Waiting

We're still waiting to hear from cardiology. We called them this morning and left a detailed message, but so far no call back. I worked this morning and when I got home Drew looked pretty blue to me. Blue lips, purple hands and purple legs. I'm starting to get really scared. We called our pediatrician, who is awesome. She usually calls back within a half hour. I'm hoping I can either bring him to her or that she'll call cardiology for us. I took a picture of his blueness, but I don't know if you'll be able to see it on here.

Drew saying "cheese"

Drew's Endocrinology Appointment

Today was Drew's endocrinology appointment. The endocrinologist follows him for his hypocalcemia (that means low calcium for you non-medical types out there) which is associated with his DiGeorge. We have been trying to wean him off his calcium because we were told by his immunologist at UCSF that most kids with DiGeorge no longer need calcium at this age.

After waiting for an hour we finally got to see the incredible Dr. Styne. He is supposed to be one of the best pediatric endocrinologists around, so apparently he is worth the wait. He did a quick exam, ordered some blood tests, asked if I had any questions or concerns (I did not) and he was out the door. He wants to see what Drew's blood calcium is now before we change his meds. We may decrease it , we may keep it the same for a little longer. We won't know til the blood tests come back.

And so it was off to the lab for the blood work. Our favorite phlebotomist was not there--she was out on maternity leave. I told the lady that Drew is a hard stick, but she didn't seem to really spend a lot of time looking for a good vein. She put on the tourniquet and found a vein and went for it. No blood came out so she wiggled the needle all around Drew's pudgy little arm while he sat in my lap and screamed. She gave up on that arm and tried a second time. This time we were lucky! I was trying to distract him by telling him to look at the stickers on the wall, sing the ABCs, etc. and between sobs he was saying "I don't want to look at stickers!" "I don't want to sing ABCs!" Poor guy. He is so good. He really calms down quickly once its over and moved on to picking out a sticker (Cars) and getting his treat (m&ms).

So that was going to be the extent of my post, except guess who just called? Yep, Dr. Styne. He noticed that Drew was cyanotic (blue) and wanted us to make sure we called the cardiologist in the morning. What?! Does he know that nothing strikes fear into this mother's heart like those words do? Um, we just saw the cardiologist last week and his O2 was 83. That's pretty much the highest its ever been. He's acting fine, it doesn't seem like anything is going on with his heart. But now there is the Unknown. The What-ifs. I hate the Unknown and the What-ifs!

Drew's Cardiology Appointment

Today we had an appointment with our pediatric cardiologist, Dr. Parrish. Drew had an EKG and an echo and he did great. He is such a brave boy and listens so well to the Doctors, nurses and his parents. He laid still and watched sesame street for 45 minutes during the echo and only occasionally complained that it hurt. I think it was more uncomfortable with the wand pressing on his belly and ribcage than painful, but he doesn't know that word. The worst part was taking off the 15 "stickers" after the EKG was over. He also got to choose a surprise when we were done and he came home with a tiny little plastic alligator.

The results were encouraging: his heart is functioning well and he is doing great. For a split second, I was waiting for them to say "and nevermind about the surgery." But of course they didn't say that. It is actually a good thing for them to do surgery while he is healthy and his body is not in distress. The other good news is that Dr. Parrish thinks that his heart looks so good that it is "tempting" to do a complete repair instead of the Fontan that is typically the next step after the two surgeries Drew has already had (a Norwood and a Glenn). That means they would restore his heart to a normal circulation pattern. This would mean a better long term prognosis, as a Fontan circulation increases the pressures in the heart and lungs and these kids usually need some kind of additional procedures once they reach adulthood.

So that would be awesome! But I'm trying not to get my hopes up, because we don't really know which surgery they will do or when until after Drew's heart catheterization. We will be scheduling the cath at UCSF hopefully early in April.

Normal Heart

Interrupted Aortic Arch

Ava's walking!

And it is so cute! She has been taking 2-3 steps for a while now, but never more than that. Then while we were at my mom's house she just started taking off! She took up to 8 steps walking to and from people and then decided she could do it whenever she wanted. She walked across the room multiple times! It's so funny to see her walking around because she is just so tiny! It is definitely time to lock the cabinets! I'll post more walking pictures soon.

Ava walking at Grandma's House with Daddy and GAL watching

The week in review

Since this is supposed to be a blog to keep everyone up to date on what our family has been doing I thought I better post something. We spent the past week or so at my parent's house in Southern California and have been quite busy!

In the past ten days we have:

• driven 1300 miles (that's 20 hours!)
  
• attended 2 weddings without our kids
  
• visited with 9 family members
  
• played at three different parks
  
• gone on one date (we saw Zodiac)
  
• been to the Simi Valley Mall and to Huntington Gardens
  
• got haircuts (everyone except Dan)

Phew! I feel tired just thinking about it!

Ava swinging

Drew swinging

Christina & Ryan

Dan & Andrea

Vegas Baby

Last weekend we drove down to Southern California with the kids to my parents' house. We made the six hour drive with relative ease. The kids were great! Drew was occupied with his Lion King DVD and Ava played with a mylar balloon the whole time she was awake. I am going to have to remember that trick for next time! The plan was to stay the night here, then drive to Vegas with my parents so they could watch the kids at the hotel while we went to our friend's wedding. Unfortunately, my mom has been pretty sick and couldn't make the trip. So we left the kids in SoCal where my sister, mom, dad and aunt combined forces to take care of the kiddos.

It ended up working out great. I think it would have been difficult to have the kids in the smokey hotel with no toys and nothing to do. And it meant we had a kid-free weekend! Well, 36 hours at least, and eight hours of that was driving. But still! This would be the second time since Ava was born.

The wedding was beautiful. They had the ceremony outside with all these little white lights illuminating the trees and gazebo. The party was fun! We got to sit with some of our friends from college (it seems like we only see them at weddings now). There was great food, dancing, and lots of talking. After the wedding we hung out at the hotel bar and managed to stay up until 12:30. Hey that's late for parents of two small kids! We still woke up at 7:15 (some habits are hard to break), but it's amazing what a difference uninterrupted sleep makes. We felt refreshed!

I also had an 800% return on my gambling investment. So what if I only gambled $1, 800% is nothing to sneeze at! Plus it paid for almost half of my brunch on Sunday.

Andrea & Steve under the gazebo

The girls at the wedding

The guys with Steve

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.