Post-op

Today was the day to get the clear to fly home Sat. Did we pass....not yet. Matt has been running a temp. of 99.6-101.6 the last two days. His O2 is 97-99% and his chest x-ray is clear so that rules out pneumonia. Matt had blood taken today and we will know tomorrow...hopefully. The chance that it is just a viral infection is pretty high (like the cold or flu) because another child who was hospitalized at the same time has the same symptoms and hers is a cold.

We are OUT

After what seemed to be an eternity of tests and paper work on Monday, the kids got out at 4pm that afternoon. Lillian is trying so hard to be happy. She came home with an itchy rash from the tape that covers her chest, including her scars. Then to top it off had an allergic reaction, in the form of another rash that covered her chest and neck. She is taking benedryl and has cream to put on her rashes, but it doesn’t seem to take the rash away quickly enough. Her cousin, Sam, is the greatest cure for Lillian. He entertains her and helps keep her mind off her itches.

Matt is zoned. He can’t seem to sleep. The night before discharge he slept only 2 hours, from 2am-4am. I took him on wagon rides through the IMU all night. Today, he took maybe a one hour nape and is crying right now trying to go to sleep. The poor guy. I have watched a movie with him and have tried rocking him. He probably is stressed out from the hospital stay and no-one could blame him if he is. The good news is he came home on no O2. Matt's surgeon says he will still have some breathing issues and considers the surgery a success if he is only hospitalized twice this fall. Maybe if we are super blessed the hospital won't happen at all.

If you can’t tell we are feeling a little sorry for ourselves. Both Matt and Lillian can't go swimming, to the park or even take a deep bath for 6 to 8 weeks. (There chest can't have any water sitting on it.) I am administrating over 30 meds a day between the two kids. I draw them all up in the morning and have a sheet that I made out with an hour by hour detail of what needs to go to which kid. Maybe, the meds will get reduced when we go to our post-op appt.

Even Marissa is feeling poor and picked on because she doesn’t get any of the meds:> Silly kid. Monday night, our first night back and Marissa had night tares, twice. Meaning she is screaming in her sleep and doesn't wake up. Philip, the great husband that he is, got up both times with her and ended up curled nxt to her this morning.

Both kids have a follow-up appt. on Thursday at noon. That means more tests and x-rays. Yea…and yes that is a sarcastic yea.
I managed to get a three hour long nape today. My sister, Leah (flew in today to help out), and my mom watched the kids and handed out the meds. Tomorrow will be easier. I don’t know how, but the lie is how I keep on going and maybe one day it will be better.
Matt stopped crying and is hopefully sleeping restfully. We will be back Saturday to Utah. My mom is helping me fly with the kids.

Lilly & Matt are doing well!!!

Matthew had his ct scan on Friday. It was supposed to be at 8:00 so they stopped feeds at 2:00 am. They did not get him in until 11:45 so he was starving and upset. The results of the ct scan were better than Heather and I had expected. His airway has opened some. Matt went back into the O.R. Saturday morning for a bronchoscopy. His dr thought that there may have been a mucous plug but it turned out to be a floppy portion of the airway. Although his airway has opened, it is still smaller than it should be. It is our understanding that he will continue to have some respiratory issues but may grow out of it in a few years. He is doing well and is always happy. He is off most of his meds and breathing on room air. I took him to the play room today where Lillian was hanging out with the life specialist. He played until he fell asleep on the floor. He was moved to the intermediate care unit this evening. This is a big step towards a hospital discharge.

Lillian has turned a corner and is showing signs of the happy little girl that we know so well. She was transfered to the intermediate care unit on Friday afternoon. She is off all of her pain meds. The child life specialist spent about 5 hours with her today. They painted each others nails, played games and covered a doll with band aids. This gave Heather a much needed opportunity to get some sleep. Lillian has a ct scan on Monday and then will most likely be discharged. She is excited to start 1st grade next Monday and is looking forward to seeing her friends. It's hard to believe that just one week ago she underwent an 11 hour surgery. She is truly an outstanding and very special girl.

Marissa and there cousin Sam came and spent part of the day with Lillian on Friday. Papa sat with the kids for a few hours this evening so that we could take a break. When we got to the hospital, He and Lillian were watching High School Musical 2 and singing along. Now he wants a shirt to match Lillian and Marissa's. LOL!

Heather is flying home with the kids next Saturday night. Her mom will be going with her to help out.

Both Lillian and Matthew are tentatively scheduled for discharge on Monday.

Go Figure

Last night Heather went to her parents to get some rest and both Lillian and Matthew were up all night. I spent the entire night running between their rooms. Heather is at the hospital with me tonight and both kids are sound asleep.

Lillian has made progress today. It was a long and difficult surgery but she is doing remarkably well. She is on 1.5 liters of oxygen with an o2 sat of 98% to 100%. Her chest tube was removed this morning and her meds have been decreased. She is however sad today and continually asks to go home. I think that she'll be much happier tomorrow after finally getting some much needed sleep.

Matthew's a crazy guy. He was extibated this morning and has continued to make progress. The docs do not allow a patient to eat or drink for several hours following extibation. It's never known if the patient will regress and need to be reintibated. After approximately 4 hours post extibation, Matt was overwhelmed with hunger and tried eating his oxygen mask. When that did not satisfy him, he tried eating the tubes. A few minutes later his doc gave the okay for solid foods and juice. Matt drank pedialyte, ate a few crackers and went to sleep. It has been about 4 hours and he's still sound asleep. His surgeon will order the much anticipated ct scan tomorrow or Friday. We'll know at that time if the surgery was a success or if more intervention is needed.

Marissa has spent the day with her cousin Emma. We thought it best to let Matt and Lillian rest today. She will come up tomorrow.

Lillian and Matthew are improving!!!

Lillian was extibated tonight and is doing okay. She has a reactive lung so the docs are not allowing her to drink anything yet. She keeps waking up and asking for water and it's difficult to tell her no. Hopefully she'll continue to progress throughout the night and tomorrow will be a better day.

Matthew is still on the vent. His doc is planning on extibating him tomorrow. Matt must be off of the vent before they can do the ct scan. The objective of the surgery was to alleviate the pressure on his airway. The ct scan will gage the size of his airway. It will be compared to his pre op ct scan to determine improvement, if any.

Marissa visited earlier today and did better than expected. We were concerned that Lillian and Matt's chest and breathing tubes would scare her but she did not even notice. She was just happy to see that her sibling were okay. She misses her big sis and asks about her constantly. If Lillian feels better in the morning, we're going to let Marissa spend a little more time with her sis tomorrow.

The lack of sleep is beginning to catch up with us. We're doing our best to pace ourselves and Nana has been a big help.

Happy Monday

Morning came so early. At 5:08 I woke up and realized that my alarm didn't go off at 4:40. Matt and I got out the door a little late but that just meant that they hospital was really ready for us when we finally checked in at 6. So we were a half an hour late. Matt went in a little after 8 and is expected to be in surgery for 8 1/2 hours. That puts us at 4:30 this afternoon when he should get out.
Lillian looks great! She had a great night and the surgeon is planning to close her chest when he is thru with Matt's case. She moves every once in a while and even woke up last night. She is under medication so that even if she wakes up (which she isn't supposed to do yet) she won't remember anything. It gives her amnesia. So more later. Philip and I are so tired.

4 hours Post Op

It has been 4 hours since Lillian's surgery and she is doing well. She is behaving (medically speaking) and we are hopeful that she will recover quickly.

We appreciate the calls of conern and your continual prayers.

Hope?

Lillian's surgery is whinning down. She came off of bi-pass but her chest will be open. We are hoping to be able to see her in 1 1/2 hours. She will have a long hospital stay ahead of her. Matthew is still on for tomorrow.

Complications

The surgeon's nurse came out and gave us an update. Lillian is not doing well. There are complications getting her off the heart and lung machine. Her blood pressure is off which could cause her to stroke. The surgeon is taking out her stents, which you can't do without removing that part of her pulmonary artery. They are putting in a patch like Matt has over the pulmonary arteries. The patch is not as extensive as Matt's. She will be on the heart and lung machine a long time which causes her body to swell. This means she will come out with her chest open and possible be on ecmo. They say another 2-3 more hours...

Still waiting

It's 2:20 and still no update from the doctors.

It has been a draining weekend here in San Diego. Lillian’s surgery on Saturday was post-pone till Sunday. We arrived at the hospital Saturday morning and checked Lillian in. The surgeon called while Lillian was taking her meds to make her sleepy and asked the nurse to hold off. The surgeon came in and explained that their is another child that needed surgery immediately and asked if the surgery could be post pone till Sunday.
So it is now Sunday morning and Lillian is in surgery. She was so silly after she took her med. to make her tired. Lillian was singing 'my doctor likes to wear my dirty underwear' you know from Alvin and the Chipmunks movie. Everyone, including the doctors and surgeon was laughing. The surgery should last from 8am till 2:30 pm. So I will update the blog tonight and let you all know how the surgery went. If you can’t tell, I’m so tired. I didn’t sleep very well last night.