Hopefully heading home soon

Gracie has been doing very well since the last update. Over the weekend, they tried to wean off the oxygen but were unsuccessful (they did not try Sunday), but were successful on taking her off the ativan and methadone. Gracie had spit up some on Sunday and so they wanted to do another chest x-ray and call in a pulmonary doctor to see if there was anything they could do to help Gracie get off oxygen. Yesterday, Gracie was not a happy camper, but was doing very well with out the oxygen except for when she did try to sleep. She would not eat or sleep and had been up since 5 am. Needless to say Todd and I was worn out, a little grumpy, and very frustrated. The pulmonary doctors came by yesterday and said that there was not anything that they thought needed to be done or that would help Gracie but that it would just take time to get her off the oxygen. The night shift nurse came in when the pulmonary doctor was in here and heard the part about being on it a while probably so immediately turned the oxygen back on after she left. I was not very nice to this nurse because she would come in and wanted to force Gracie to eat all her bottles every three hours and what did Gracie do.......throw up all over me. So I told her that Gracie had not been eating well Monday, had not slept, and I would rather her NOT come in and wake her up, but if she wanted to come in and force feed her, she was more than welcome to and that she would probably be covered in throw up so I guess she decided to leave us alone.

Anyway, enough about the grumpiness and nurses...we are just ready to be home. The nurse turned off the oxygen today and Gracie has done well all day. The doctors came in this morning and said that there was no way of getting Gracie home on the airplane because they still want her to have oxygen and the only way they will release us was if we were going to drive. They said that there was a lot of extensive phone calls done on Monday and that there was nothing possible for Gracie to have that the airlines would approve, so we would be driving home. So I got on the Internet and decided to do some more investigating. I found on Southwest there was some companies that deal with airline approved oxygen so I called them and they said yes she should be able to use those and that they could overnight one. The pulmonary doctor came back in today and thought that it would be fine to use and if it was a higher dose than what Gracie needs, we could use a mask and she would not get as much that way, so I told this to the discharge nurse and she said, "I thought I knew everything that has to deal with pediatrics, and I have never heard of this." SO that is the way this day has gone...BLAH BLAH BLAH!!!!!!!!!!!!!!!!

So ANYWAY...............Gracie is probably going to be released tomorrow and hopefully we will get to fly home on Friday!!!!!! If not, Todd and I will drive home, but let's all hope and pray we can fly. I will keep you updated and let you know something hopefully tomorrow and know definitely when we will be home!

Here are some pics with Gracie sitting in the toy at the hospital. We had to use about 4 blankets and you couldn't see her feet at the bottom. **Notice there is nothing in her nose!!!

Easter...

Well, Gracie had an Easter dress, but as you figured out, she didn't get to wear it. Yes she will wear it the very first Sunday she gets to go to church though and NO Todd and I didn't just leave her naked. We found an Easter outfit that will just have to do for now! She still looked very cute!

We forgot to take a bow up to the hospital, so the nurses made one out of the stuff they put on you after they draw blood...pretty creative!

Gracie and the hiccups along with her happy Easter message.

It's all good...

Gracie has taken many steps this week all in the right direction. On Thursday, Gracie's breathing tube was taken out and she did great. They kept repeating blood gases and even though she was not happy since they would not let her eat, her gases were still good. They had Gracie on 3 liters of oxygen. You could barley hear Gracie cry even with the breathing tube out, or if you could hear her, it was horse.

Friday, they decided to take out her chest tube and pedi catheter, so again more blood gases, with no food and all turned out great as well. They also started feeding Gracie by mouth Friday night. She was not sure at first, but ended up doing well. Oxygen level was 1 liter.

Saturday, Gracie continued to make progress. They took out her arterial line and decreased the oxygen to 1/2 liter. Since they took out the art line, we were able to hold, feed, and rock Gracie to sleep! That was a great feeling since it had been 2 weeks!!! They weighed Gracie last night and she weighed 6 pounds 1 ounce!!!!!!! I thought it would take us a while longer to get to the 6 pound mark, but Gracie took a growth spurt while we have been here.

Today, we have been moved back down to the 15th floor and will be here until we get out of the hospital. They are only monitoring her oxygen level and hoping to decrease that over the next couple of days. If all goes well, and Gracie does well feeding and gaining weight, we will be released from the hospital and then in Houston until the follow up check up with either the cardiologist or surgeon about a week later.

All the prayers, cards, and calls, have been such a blessing to Todd and I and have given us so much support! It is so hard in words to tell you how thankful we are to have so many people that care about us. Hopefully we will see you all very very soon!

Making Progress!!

Gracie has taken big big steps for a little bit her size yesterday and today.

Tuesday:
Yesterday when we got to the hospital, they had weaned her oxygen level down to 55% and stopped giving her the morphine. They also started giving her versed and milirinone to help with the withdrawal symptoms. The echo cardiogram done on Monday looked really good with Gracie's heart functioning much better than before surgery. The doctors decided to leave the chest tube in for another couple of days just to make sure everything is going okay with that. Tuesday, they weaned down her oxygen level but wanted to leave the nitrous oxide alone to make sure that Gracie is tolerating it well.

Wednesday:
This morning, Gracie was at 40% oxygen and they turned down the nitrous oxide to 5 from 10 on Tuesday. They also gave her a trial hour to see how well she did breathing on her own and only having the ventilator on for backup support. Gracie passed that test with flying colors and her blood gas looked great afterwards, so they decided to give her another test this afternoon but for 2 hours. I talked to the nurse and she said that Gracie did great through the afternoon 2 hour trial and her blood gas looked good again.

SOOOOOOOOOOOOOO....the plan for tomorrow is to try and get Gracie off the vent and remove some of the other lines!!!!! Yeah!!!! They are not going to let her eat after 5am and will give her IV fluids until after they extubate her.

Gracie is very alert and just looks around. Sometimes it is very hard because you can tell she is crying and you can't pick her up, but hopefully really soon. If Gracie does okay with all that, they will watch her a couple of days in CVICU and then move her to the 15th floor for a few more days. This could mean we may be home around this time in 2 weeks!!!!! Keep hoping and praying that this will be the case!

Callie is 4!!!!

I can't believe that my oldest baby is 4 today! She is such a joy and sweet little girl. Callie is always going to brighten your day if you are having a bad one. She is such a thoughtful girl and wants to help as much as possible. Callie is my big helper and my dress up queen all around!

Callie, the day you were born, you brought a whole new love and joy to Momma and Daddy. Callie, I wish for you to grow up to be a strong girl who knows she can do anything you want and wish. I want you to keep learning like you do and soak everything up. Most important, I wish for you to be a little girl in God's image and to follow Him.

2 years old

3 years old

Close to being 4 years old

We love you Callie!!!! and miss you very very very much!! When we get Gracie home we will throw you a big Enchanted birthday party!! I am very proud to be your momma!

Big Changes for Ms. Gracie today!

Gracie had big changes today. They moved her into an isolation room because they were shutting down the part of the unit that she was in to remodel it. So that happened this morning. They also "water sealed" the chest tube in order to see how well Gracie did. The x-rays today showed improvement with the less air in her lung and being expanded.

They also did another echo cardiogram today and we will get the results tomorrow. They went from a rate of 22 to 18 on the ventilator and from a pressure of 8 to 7. They also came down on the nitrous oxide from 18 last night to 9 tonight. They are still feeding Gracie and increasing each feeding by 5 cc so at 9:00 pm tonight she was getting 35 cc of formula (one ounce). They took out the regular catheter today and are hoping g if everything looks good in the morning to take out the chest tube tomorrow.

They started Gracie on a drug that will help with the withdrawal symptoms when they start taking away the morphine and other sedation medicines (they already decreased the amount of morphine by half today).

So yes, we are making progress slowly, but that is okay. Gracie is alert and knows when you are there. She makes eye contact with you and tries to smile sometimes, depending on what is happening to her. She is such a strong little girl and fighter. I am so ready to hold her and be able just to rock her!

Todd and I are still doing okay. It has been really hard tonight and will be tomorrow. Callie's birthday is tomorrow and they had a party tonight for her. We got to see her blow out her candles and open presents through the web cam but it was just not the same. I will update later tomorrow night if anything changes!

If you see Callie tomorrow give her big and extra kisses from us since we can't be there for her birthday! I can't believe my oldest little girl is 4!

One Week Past

It has been a week since Gracie's surgery. She is doing pretty well and I will blog each day after surgery. Monday was the roughest on all of us, but we are doing okay now.

Saturday March 29th:
Gracie was pretty stable most of the day. She had a good night. Mom, Dad, Callie, Kadee, Charla, Tommy and Jeannette all went home. That was the hardest part of that day

Sunday March 30th:
Gracie started dropping her oxygen level and had a pretty rough night going into Monday morning. Still on lot of IV fluids and still looked pretty swollen. This day Gracie was probably the most swollen since surgery.

Monday March 31st and Tuesday April 1st:

The whirlwind day. Gracie's stats continued to drop and the only way to keep them up was to "bag" her and I just couldn't stand the sight of that. They did chest x-ray and determined that the bottom portion of her right lung was collapsed so in order to fix it, they decided to put in a chest tube. After putting in the chest tube, we thought Gracie was going to get to rest, but a short time later, they decided to put in a pedi catheter since Gracie had so much fluid on her and her kidneys could not do the job alone. They started dialysis to help and did it continuously. They also found an infection in Gracie's esophagus, I think. It may be in her lung okay. Her nurse was so good and didn't seem stressed, but rather calming. Gracie was completely out of it the rest of the day (and I would have wanted to be to!) Todd and I were exhausted mentally and physically that day. Fresh start for Tuesday.


No April fooling or jokes this year! Todd and I did manage to get out and go to the zoo today and was pretty impressed. Gracie was stable and doing much better. She stayed at 95% oxygen most of the day and really no changes were made. Gracie looked much better today and the dialysis continued. No big changes.

Wednesday, Thursday, Friday:
Baby steps are what happened these days. Gracie continued to do pretty well with the doctors decreasing the oxygen level. They started letting Gracie wake up a little more and Friday when we went to see her, her eyes were wide open and looking all around. The doctors have started weaning her off the med for blood pressure and decreasing the oxygen level down to 65%.

Saturday:
Gracie had a really good day. The doctors discontinued the lasix drip and are now giving it through her IV. Gracie is still on 65% oxygen still but are decreasing the level of nitrous oxide. Gracie is still not being sedated as much. When they used to suction her, they would have to give her a paralyzing drug but now she tolerates it pretty well. NO, she does not like it and would probably tell the nurses that if she could talk, but at least her stats stay up. They started feeding Gracie through the tube and giving her 6cc every three hours.

For such a little girl, and what she has been through, she is still smiling when you see her and talk to her. Todd and I had a wonderful dinner with Todd's old next door neighbor that he calls Nanny and her son and daughter in law, who are some of the nicest and really special people for support. It was nice to get out of the hospital and get our minds off things for a change. We ate at a restaurant called the Black Walnut Cafe, which was very good, and Todd wanted everyone to know that he drank Peach Tea.

I know I left some things out and am going to attempt to blog everyday about the changes and progress that Gracie is making. Thanks again for all the support, calls, cards, and e-mails. That really does make a difference. Under the circumstances, Todd and I are enjoying getting to spend some time together and it is really different having no kids around, but just the time together is letting us reconnect and bond even more as well as strengthening our marriage.