Thursday, March 29, 2007
Wednesday, March 28, 2007
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:
- 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!
- 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
Take a Drink
Monday, March 26, 2007
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.
Drew is glad to see Ava
Sunday, March 25, 2007
- 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.
- 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."
Saturday, March 24, 2007
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 hospitalDrew watching a movie in his bed
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.
Thursday, March 22, 2007
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.
Wednesday, March 21, 2007
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.
Drew saying "cheese"
Tuesday, March 20, 2007
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!
Wednesday, March 14, 2007
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.
Monday, March 12, 2007
Ava walking at Grandma's House with Daddy and GAL watching
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!
Christina & Ryan
Wednesday, March 7, 2007
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.
The girls at the wedding
The guys with Steve