5/31/06-Homecoming Day

Today was a very exciting/eventful/stressful day. We were all very excited about taking her home. Even Cedie was excited. I was up at 5 am, cleaning and doing last minute organizing (basically just passing time b/c I couldn't wait to leave for the hospital). Chris had a quick sales call to make at 8am so Dylan and I went to the grocery store and bought some baby food :-) Finally at 9:45 we were all 3 in the van (borrowed from Grandpa- Thanks!). Dylan was distressed b/c Chris had Cedie in a middle seat and he was in the back seat. He said he NEEDED to be by Cedie to protect her. Once we got there, Cedie was happy to see us. We packed up the rest of her things (boy was there a LOT) and got the van loaded in record time. Her nurse worked really hard on her discharge papers (thanks Ms. Carol) so that we could be out the door before 2. It was bittersweet leaving the unit. I will miss all the great people that worked there with us. As we walked through the lobby, some more of Cedie's fan club stopped us to say their goodbyes. We loaded her up and headed out. She was awake and very interested in what we were doing. She watched out the window the whole ride home.

She had several visitors once she was home. She hardly took a nap all day. By 6pm she was out for the night. Her brother tried to sleep under her bed and in the nurse's rocking chair.

I have had a very interesting/distressing night. We had some nursing issues and her vent wouldn't stop going off. There was a freak hail storm and the power went out a couple times. Regardless of all this drama, I am so HAPPY to have my little girl sleeping in her own bed, in her own room tonight.

To all LeBonheur TCU Nurses and Staff

We want to thank all of you for your hard work and dedication. You have taken such good care of our daughter and we will be forever grateful. We will never forget any of you.

TCU has some of the best nurses in the city. You care for these children like they are your own. I would take all of you home with me if I could.

TO MY PRIMARY NURSES: I love you all! You each were strong advocates for Cedie and great advisors for me. I don't know what we would have done without you. I couldn't have asked for better ladies to care for my child! Your dedication was amazing. I will make sure Cedie knows your names and what you did for her. I hope you stay in touch and come visit us any time! And Nicole, we will be coming to Atlanta so get ready!!!

Ok, gotta end before I cry.... It's time to go get our girl!

Tuesday, 5/30/06

Its Christmas Eve! Ok, its actually May 30th but it seems like Christmas Eve at the Mock house. The three of us are so excited about bringing Cedie home tomorrow. We are franically making sure all is perfect in the house for her arrival. We bought several organizing cabinets and bins. She sure has a lot of medical stuff! She will have the most organized baby room ever!

Cedie had a good day today. I was up there twice and both times she seemed excited too. I guess we are rubbing off on her! We met one of her home nurses and two of the agency staffers today. They had all heard about Cedie's blog prior to today's meeting. They all said today was like meeting a famous person! They had even printed some pictures out! The Cedie fan club is growing everyday.

Memorial Day- 5/29/06

Hope everyone had a good holiday today. We certainly did! Chris, Dylan, and I swam in our pool most of the morning. I called to check on Cedie around lunch time. Her nurse said she was depressed. She said she wasn't playing or smiling like she usually does. We think that she noticed that she was alone again after 72 hours of undivided attention from Chris and I. So, Dylan and I came to the rescue :-) We went to see her. She was so happy to see us. We took her for a stroll. We got some ice cream and took her to the patio area. The three of us had a blast. When we went back up to the unit, Cedie and I sat outside her room and watched Dylan entertain a couple of the sweet little boys that are long term patients in the unit. Everyone, including all the nurses, had a great time. Dylan is so silly :-)

Two more days!

Great Weekend- 5/26-28

We had a GREAT weekend. Cedie was so happy all weekend long (and her parents were even happier). She has not needed any oxygen since Thursday. She is still on a rate of 12 but does 3 hours 2x per day off her rate (CPAP). She didn't give us one moment of trouble during the 72 hour stay :-)

Friday morning I was practically skipping down the hall (I didn't even care that it was 7:30AM). I couldn't wait to start my 48 hours of uninterrupted Cedie time! It has been since last August that I last got to spend that much time with her! We stayed busy all day. Twice I fed her baby food in a highchair and twice I got to feed her a bottle. We got her loaner KidKart (wheel chair that looks like a stroller). She loves being it. Around 5pm we got the results back from Cedie's trach culture. {Cedie has been in "isolation" since she was 1 month old because she got a staff infection. A few months after that she also got CMV. The good thing about that is we always got her own private room. The bad part is everyone (except Chris and I) had to wear gowns when interacting with her and she was stuck in her room. This week they decided to do 2 trach cultures. If both came back negative (meaning her infections were colonized and not active) then she could leave her room via her KidKart.} Well they came back negative! Friday night I took Cedie for her first stroll outside her room. She's in LOVE! She did not want to stop.

Saturday daddy joined us. We took her for a stroll outside. We found a little patio area with plenty of shade. She was amazed. Its been a long time since I've seen her so happy. We were probably gone for 2 hrs and we didn't have a bit of trouble. Not even 1 alarm. Saturday night we took her to the cafeteria to eat dinner with us. She sat there, content as could be, watching us eat. Chris gave her a Cheetos to play with. She liked it :-)

Sunday was daddy's day to be by himself. I left to get Dylan and we went back to meet them for lunch. The four of ate lunch together. It was awesome! Then we went back to the "patio" and ate ice cream. Dylan loved strolling Cedie around. I think she loved it too. We went back to her room b/c it was time for her breathing treatment. I didn't want to leave. My 48 hrs was like a tease! I can not wait till I can spend that much time with her on a daily basis!

We passed our stays! Now the only thing that stands in the way is the nursing agency. Hopefully they will get their stuff together and we can walk out with our little girl Wednesday!!!

Thursday, 5/25 - Great Day

Today was a great day. Things are getting exciting as we count down to the discharge day!

First off, Cedie is now on 21% O2- ROOM AIR!!!!!!!! Someone accidently disconnected the O2 from her new vent sometime last night. By the time they discovered it this morning she was still sat-ing 100, so they took a blood gas. It looked great so they kept her off all day. Then her pulmonologist wrote the official order this afternoon. This means that she is only getting a minimal pressure and a bpm rate of 12- the rest she is doing ON HER OWN! GO CEDIE GO!!!

We did our last day of training this afteroon. We went over all the equipment once more and then signed bunches of paperwork. We are now READY to take her home and deal with her own equipment.

We took some of her stuff home today. You'd be amazed at the amount of stuff that she has accumulated in the past 9 months! Her hospital room is looking bare whereas her room at home is getting more full :-)

I start my 48 hour stay at 8 AM tomorrow morning. Chris will join me Saturday morning at 8am. I'll try to post while I am there. If I can't get to a cpu then I'll tell you all about it on Sunday :-) I can't wait to get to spend 48 uninterrupted hours with my very special daughter!!! Its so GREAT!

Wednesday, 5/24/06- Training Day #2

Today we learned how to set up Cedie's home vent and we switched her from the hospital's vent to her vent! This is a huge step out the door!

She was super cute during the training. Like yesterday, she paid attention for a while. At one point we were all standing around her bed, going over all of the vent tubings. Cedie must have thought we all were coming to play with her because she started making her kissing noises and smiling real big. Once she realized we were still training she decided to take a nap.

After training I tried to feed her by bottle. Her Godmother was in the room and so was one of her fav nurses so she really wasn't into eating! She was too busy socializing :-)

She did good on her 1 hr CPAP trial and she slept all night.

Less than a week to go!!!!!!!!!

Tuesday, 5/23/06- Training Day #1

We did our first (of 3) training day today. We learned how to clean & sterilize her trach tubes. We learned how to take care of, troubleshoot, and clean her new home suction machine. The home apnea monitor is the same as she had the last time she was at home (9 mths ago) so that training was a breeze. We also learned all about O2 tanks. Lastly, we were trained (again) on infant CPR. That certainly brought about some scary flashbacks but her dad and I remembered how to do it so that was easy too. In all, it took about 2 hours. Tomorrow we will train on the vent itself.

Cedie had a good day. She sat in her swing during our training session. She acted like she was paying attention for a while then she decided it was a good time to take to take a nap :-) She knew mom and dad would take of things :-)

She took 14cc from her bottle today! We are slowly making our way back up. She got out of practice during all her recent surgeries. When she gets home she will be seeing lots more of the bottle! Also, her ST fed her green beans earlier today.

She did a 30 min. CPAP trial this morning. They took a gas afterward and it looked good so she did a hour trial tonight. She handled it well. Also, she is now on 25% O2!

We are still set for discharge next Wednesday!

Monday, 5/22/06

Cedie had a good day. She weighs 6.86 kg (15.1 lbs). The surgeons came and changed her dressings on both her arm and her leg. The transplant site is looking much better. The donor site is still very sore but also looks good. She was a little needy today- she wanted her nurse (one of her favs!) to hold her all day. Ofcourse she (the nurse) would happily oblige if she didn't have two other patients! I held her until she went to sleep for the night. For a long time she clutched my shirt with all her might and she kept peeking her eyes open to make sure I still had her. She's so cute!

The Home Health Co. representative came by to survey our house this morning and talk to Chris and I about all of her home equipment. He made a few "suggestions" for things we need to make life easier for Cedie, her nurses, and us. Guess we need to shop this weekend :-) We set a schedule for the 3 training classes we have to do. We will meet at Cedie's bedside T, W, & Th of this week at 3pm each day to train on each piece of equipment that she will need at home. We needed to have it all done by Friday so that I could start my 48 hour stay (Chris will start his 48 hour stay on Saturday).

Our nurse said it looks like discharge day will be next Wednesday- 5/31/06!!!

23 DAYS UNTIL CEDIE'S 1ST BIRTHDAY!!!!!!!!!!

Sunday, 5/21/06- Car Seat Trial

Today Dylan and I took Cedie's car seat up to the hospital in order to make sure she still fits in it. She was a little leary at first but once we started talking to her and rocking the seat she was fine. I kept her in for about 20 minutes so that she could see that it is not a bad thing. She had fun "talking" with her brother and I. We both sat on the floor in front of her.

Cedie had a good day today. I talked with her pulmonologist and he said he was very pleased with how well her lungs are doing. He said we could do our 72 hour stay this coming weekend! We are so excited. Dylan is telling everyone he sees that his baby is coming home and that he is going to be a big brother (I keep telling him he has been a big brother since she was born but he doesn't quite see it that way).

We got the house all ready for Cedie this weekend. We finished all the flooring and got her room just perfect. Someone from the home health company will be by at 8am tomorrow to check out her "physical surroundings". He will also be discussing all the equipment she will be bringing with her. Should be interesting.

Saturday, 5/20/06

Cedie had a great day! She did not take a nap but everyone in the unit kept talking about how content she was just to play in her room by herself! When I came in she was smiling big and playing with her pacifier. She even smiled during her trach care! I think I found the trick to that, though. I propped her mirror to one side so that she could look at herself while I cleaned the opposite side of her neck and changed the tie. Then I moved the mirror to the other side and did the same thing. She sure does love to look into her own eyes! She knows she's beautiful!!

They went down on her vent settings today. Her numbers look great as did her blood gas.

She took 10cc by mouth. She hasn't been bottle fed much this week because of all thats been going on with her arm. We'll get back into the swing of it!

I stayed late so that I could get her settled for the night. She was so tired but she wasn't ready to give it up. When I left, she was petting her stuffed doggie and girraff while holding my shirt. I called a little over an hour later and she had just fallen to sleep. Her nurse said that she just laid in her bed, contently playing with her "friends". I can't wait till I can watch her until she falls asleep even it is late. She is so facinating to watch :-)

Friday, 5/19/06

Day 1 after skin graft surgery. Can you believe that was surgical procedure #9? Cedie is such an amazing fighter of a girl! She was happy today. She didn't need much pain medication. They won't change her dressing on her arm until Monday (gives the transplanted skin time to attach).

The drs noticed that she looked a little puffy so they had her re-weighed. Yesterday she weighed 6.82(15.04 lbs). Today she weighed 6.98(15.4 lbs). They decided to give her a one-time dose of lasics. This is on top of the regular dieretic that they have her on. The extra fluid most likely came from the IV fluids she got before/during/after her graft.

5/18/06-Skin Graft Surgery

Surgery went well. They grafted the skin off of the top of her right thigh. They said the worst part would be in the first 24 hours. They said the donor site would hurt worse than the transplant site. The whole procedure (from the time she left her room until she came back) took 1 hr 35 min. She was completely knocked out from the pain meds when she came back but she was stable. That went up on her vent settings a little (not near as much as they had to last Friday after her open lung biopsy). They said that once the meds started to wear off, they would wean her back down to where she was.

Her night nurse said that Cedie seemed very comfortable. She woke up a few times when the nurse was getting her vitals but she seemed happy (a little groggy though). She was able to get 1/2 a feeding at 9:30 and a full feeding at 12:30. She hasn't had any thing but pedialyte and IV fluids since 9pm Wednesday night.

On a happier note, I signed some forms for her home heath care and home equipment. The social worker faxed them off today and told the companies we need it all set up ASAP!! We are on our way!!!

5/18/06 - Hearing Test

It's now 12:30 p.m. on Cedie's big day. We have already had our hearing tests but have not yet gone to surgery for he arm.

Cedie's hearing has improved since her last test. Her right ear has moderate hearing loss. Her left ear has NORMAL hearing!!!! The audiologist has recommended that she start learning sign language (from the speech theapist). She is also considering an amplication devise for her left ear. She will talk with ST and Cedie's doctors.

I'll post again after her skin graft surgery.

5/17/06 - Big Day Set For Tomorrow

The surgeons have decided that Cedie's arm is not healing as it should. Therefore, she is going to surgery tomorrow for a skin graft. They will take a piece of skin from her thigh and transplant it to her arm.

Also tomorrow she will get a repeat hearing test. Back in February they found she had severe hearing loss in her right ear and moderate hearing loss in the left. In March they put tubes in her ears in hopes that her hearing will improve.

She had a good day today. She did really well with her physical therapy.

We Are Going Home!!!!!!!!!!!!

Yes you read right. We are on are way out the door. Her pulmonologist wants her gone by the end of the month! Her lung biopsy results came back and they were normal (for someone who has been on a vent). There were no signs to indicate that she will be vent dependent long term! He is settling with the diagnosis of diastolic dysfunction and will treat as such. She will go home one the vent and will be weened outpatient.

So, now the discharge nurse has to order her home equipment and get her nurses lined up. Chris and I each have to do a 48 hour stay (with 24 hours overlapping each other). The home care company has to train us on her home vent. We've been told that the discharge process typically takes 2 weeks. (which means she will be home before she turns 1!!!!!!!!)

Monday, 5/15/06

I woke up at 5:30 this morning with a strong urge to call Cedie. They told me that her nurse was in Cedie's room and could not come to the phone. As soon as I hung up, my phone rings and it is her nurse on her cell phone. She was holding Cedie and they were playing! She said Cedie woke up a 5 in the best mood. She then put the phone to Cedie's ear so that I could talk to her. She was making noises at me and her nurse said she was smiling. As soon as the nurse took the phone back, I heard Cedie start to cry, LOUDLY. It was a "wheh, wheh" type of cry. Quite pitiful. So she gave the phone back to Cedie and she was once again "coo"ing at me. The nurse tried taking the phone back again and again Cedie instantly started crying. I tried not to laugh. It was sweet. I talked to her a little longer but then I had to let her go. Sigh.

Cedie had a good day. She weighed 6.83 (15.1 lbs). Her blood gas was good so they lowered her vent settings a little. The only time she needed pain meds was when they were doing her arm dressing change. I got there early and we played alot but when it came time to bottle feed she was fast asleep. However, when I tried to put her in her bed, she woke up and was very upset that I dared to leave her. She started the lip quivering and the crying loudly so I did what they say not to do.... I picked her back up :-) She instantly calmed down so I just rocked her for a little while longer. When she was really sound asleep (snoring) I tried again to lay her in the bed. This time she didn't even budge. Her nurse said she slept good all night :-)

Mothers Day 2006 - 5/14/06

Today was a great day for both Cedie and me. Dylan and Chris let me sleep in and get some much needed rest. As soon as I woke up I called the hospital and they said that she had a great night and was very happy this morning. Dylan then brought in my presents. Dylan got me a little bird that has a motion sensor and chirps. He picked it out himslef and was very proud. He also made me a card with his hand print on it. Cedie "got" me a Precious Moments musical snow globe that is heart shaped. It plays "Always in My Heart". In the globe there is a blonde mother holding a brown headed baby. It is so cute! Next, they took me, Me-maw (Chris' mom) and Pe-paw (Dylan made up these names :-)) out to lunch. We had a nice time. After lunch I called to check on Cedie and she was still doing great. Her vitals were great, she was happy, and she has NOT needed pain meds! Next my mom and I went to Daniel Shay's Salon to get my hair done. We were there 3 hours (beauty takes time LOL!) but we had a lot of fun. I got my hair cut and put blonde, red, and brown highlights in it. Veronica did an awesome job!! Its amazing how much a little pampering and a new look can do for your outlook on life! THANK YOU MOM!!! I had the biggest smile on my face when I left there. I scooped up Dylan and Chris and we 3 went to see Cedie and show her my presents. I was practically skipping through the hallway halls -like I said, I loved my new "do" and I was pumped about seeing the happy Cedie that I had been hearing about all day. Cedie was awake and playing in her bed. You could tell that she was excited to see all of us. Her daddy and I both got to hold her (1st time since the surgery!) and it was just perfect! She kicked at Dylan and he thought she was so silly! We had a lovely visit. Cedie was tuckered out by the time we had to leave. We then met my parents at Fuego's for dinner and had a great visit with them. It was a great day.

Day 1 After Lung Biopsy 5/13/06

So far, so good. They did an x-ray this morning to make sure no air pockets have developed within her chest and it looked good. Her blood gas (O2, CO2 levels) wasn't great but she was upset when they took it and she was on tylenol with codine. They went up on her rate in order to help these numbers. She was peaceful unless you messed with her. She had a rough time when they changed her arm bandage so they had to give her a shot of morphine. When I got there this afternoon, she was awake and happy-ish. She wasn't quite herself but she's definitely been worse. I got her to give me a smile and she was interested in pulling my hair, eating my finger, and swatting at her mirror.

I forgot to mention yesterday that while she was in the OR for the lung biopsy they did a debrievement on her arm. This means they cut out the old skin in order to make way for new skin to grow. The surgeon says that it is worse than they first thought. He said it may need a skin graft. He also said that her arm will probably cause her more pain than the incision from the lung biopsy. That certainly rang true today.

I am still amazed at how well she is doing. This recovery is worlds apart from her recovery periods from all her other surgeries. She is such a fighter and she loves to prove everyone wrong :-)

Tomorrow is Mother's Day. Although it saddens me emmensely that I have to spend yet another holiday without my baby girl there to enjoy it with me (outside of her hospital room), I feel like I am the luckiest mom in the world because I have a wonderful son who is so loving, compasionate and understanding even at age 5 and a wonderful daughter who is the strongest miracle angel that I have ever known. I thank God that I was the one chosen to be the mother of these two special children.

To all of you mothers reading this message, including my own mother (don't know what I would do without you!!!!): Happy Mother's Day- Enjoy yourself and enjoy your children! Never take them for granted.

5/12/06-Lung Biopsy

I just got home after 14 hours of being at LeBonheur with Cedie so this post will be short.

The surgery went much better than anyone anticipated. We were told that she would come back with a chest tube that she would have to have for 24-48 hours. Actually, the surgeon decided that would not be necessary after all! This will cut down her recovery time significantly! It was expected that she would need to stay sedated with IV pain meds but again she proved us wrong. Although you can tell she is in pain when you wake her (changing her diaper, feeding her, etc), she is sleeping good with no sedative and only tylenol with codine for pain.

The surgeon said her lungs "look" good. He saw no evidence of infection, scarring, or stiffness. They sent the pieces off to the lab for testing. We should have those results by Wednesday.

I'll update more tomorrow. Thanks for all the thoughts and prayers. God was definitely watching over her today!

Thursday 5/11/06- LUNG BIOPSY TOMORROW

We found out around 7pm tonight that Cedie will have her open lung biopsy done tomorrow morning sometime before noon. We will update as soon as we can. In the meantime, please say a quick prayer for her, her surgeons, nurses, and family.

May Photos

These photos were taken during the days surrounding her heart cath/biopsy. Enjoy :-)

ALSO: DON'T FORGET TO "SIGN YOUR NAME" (comment) on the "TO CEDIE'S FANS" POST (5/9/06)

Wednesday, 5/10/06

Cedie had a quiet day. She slept alot. She got a little mischeivious streak this afteroon though :-)
She pulled her tubing apart at the syringe and got milk all over her bed. She pulled her leads off a few times. She pulled the stocking off her hand lots of times. I had to stop bottle feeding her after 9 cc because she kept pushing it out of the side of her mouth (she thinks this is o so funny). Oh, well. At least she knows how to keep herself entertained!!!

They ordered her rate lowered again today (to 12 bpm). She is doing so awesome!

No surgery date yet.

Tuesday, 5/9/06 - EMG

Cedie had a pretty good day. Not all of it was fun but we made some progress. On Monday, a neurologist came to see her. After his exam, he concluded that she did NOT need the muscle biopsy. He proposed an EMG be performed to prove that her muscles/nerves are normal. So, today during rounds (around 2:30 pm) her pulmonologist ordered the test. As soon as our nurse got the order she called to see when the test could be done. The neurologist was not sure when he would have time. However, being the persistent nurse she is (THANK YOU!!!) she convinced the doctor to stay late and do the test today. He actually stayed passed 5pm just so that he could work Cedie in.

The EMG went good. (If you want to know what an EMG is: go to http://www.nlm.nih.gov/medlineplus/ency/article/003929.htm) We were able to conclude that Cedie's muscles and nerves were NORMAL (isn't that nice for a change :) ). So it looks like we will not be doing the muscle biopsy, just the lung biopsy. This also means she will have one less scar to deal with!! YAY!!!

Surgery was waiting on the muscle biopsy order before they would schedule the surgery. Now that this is settled, we should be able to get a date for the lung biopsy.

The pictures at the top of this post: Child Life services gave Cedie a present today. She got a My Little Pony set. It came with a regular size pony, a baby size pony and accessories for their and/or her hair. It also had stick on ear rings! I have been debating whether or not to pierce Cedie's ears so I decided to try these fake ear rings. Aren't they adorable???

Cedie was so tuckered out from the EMG and playing with her new toys that she passed out early! I tucked her in and got this cute picture of her sleeping with her favorite doll before I left. She never knew I was gone!

Monday, 5/8/06- Got My Button!

Cedie had a great day today. She was happy all day. Her arm didn't seem to bother her. Her CO2 was so good that they went down on her vent settings some more. She weighed in at 6.94kg (15.3 lbs).

Cedie was measured for a Mic-Key button last October. This is to replace the step 2 tube that she currently has. Well, it finally came in today! It will make her "tummy time" easier (one less tube in the way!) and her clothes will fit better. (Also, an important benefit in mommy's eyes is that it will be harder for her to pull out her g-tube!) This is a big step towards being a big girl!

Cedie had a lot of talking to do today! We had a whole conversation filled with oohs and ahhs! She even did her noises for her daddy over the phone!

Her surgeries have not been scheduled yet. They still might happen this week though.

Good Weekend 5/6/06-5/7/06

Cedie had a good weekend. Her arm didn't seem to bother her much. They gave her back her thumb on Saturday. Her CO2 was great all weekend and they were able to come down on her vent settings. No CPAP this weekend because they are letting her rest before her big surgeries this coming week.

This picture was taken Saturday night. Cedie held onto her baby doll with both her arms and she put the dolls arm in her mouth. She is so cute!

On Sunday, daddy, big bro Dylan and I spent the morning playing with her. She was in such a good mood and we all had fun.

We talked with her pulmonologist and we have all decided that we need to go ahead with the open lung and muscle biopsies. They will be scheduled this week.

Friday, 5/5/06

Cedie was much better today. She did not need any pain medication for her burns. She was in good spirits when I came to visit her. Her CO2 was the best its been in a very long time. We are very excited about that!

Cedie didn't want to go to sleep tonight. When I called at 11:15 pm she was still awake and playing with her toys. She was entertaining all the nurses with her "kisses" and her laughing! They were all wondering who was with her and keeping her so happy. I think she was talking to her angels that watch over her :-)

5/4/06- CT Scan- Scary Day

Cedie started out the day great. She was very happy and her CO2 was perfect. She weighed 6.95 kg (15.3 lbs). We expected the weightloss because she has been on diuretics all week in order to get all of the excessive fluids off of her lungs. She went down for her CT Scan around noon. They gave her some chlor. in order to keep her still for the scan. However, Cedie decided, instead of going to sleep like they planned, she was going to "blow kisses" and stick out her toungue at everyone! They said she was so silly!

Cedie had a bad reaction to the contrast die that the CT Scan technition inserted into her iv. Her arm started burning from the inside out. A few hours after the scan, her nurse found that her skin on that arm was peeling off and it was very red and swollen. Immediately after she saw this, she called the wound care nurse. The wound care nurse, the attending doctor, the pulmonologist, and the surgeons(they tend to all burn wounds) all came immediately. They put meds on her arm, elavated it (see pictures), and gave her some pain medication. She has to keep her arm in that "sling" for 24 hours. The nurses will keep putting meds and fresh dressings on it. They have to check her pulses every 30 minutes with a doppler in order to make sure the swelling is not cutting off circulation.

About 4 hours after all of this drama, Cedie was awake and feeling fine. She was bound and determined to get to that thumb! (her night nurse said she managed to get her thumb free twice!) After the intial shot of pain medication, she has not needed anything for the pain. Her arm looks like she had a sun burn. The surgeons say it is a partial 2nd degree burn and will have little to no scarring.

5/3/06- Talk w/ Pulmonologist

Cedie had a good night last night and a good day today. She was happy and playful. She got some new toys from Child Life Services.

Her pulmonologist called me this afternoon. He had a long discussion with her cardiologist regarding her cath results. They were able to rule out the heart as the reason for her vent dependence and the excess fluids on her lungs. Therefore, we have to look at the lungs more closely. She is going to have a CT scan done tomorrow (Thursday). Her heart biopsy results will be back on Friday. If they do not find anything with those results then it is likely that she will need the open lung biopsy and muscle biopsy performed. We have been discussing/debating these two procedures for months. However, the doctors feel that we are at the "end of the diagnostic rope". They have tried every other test they could come up with, short of these two more drastic procedures. We will meet with him on Sunday. The surgeries could be done as early as the beginning of next week.

More April Pictures

Easter Pictures 2006

5/2/06 - Heart Cath & Biopsy Day

The day started out rough. At 4 am she got really aggitated and they had to give her some chlor. for sedation. Her CO2 was way out of control. They took a chest x-ray and again she had fluid build up. When I got there at 7:15 (am) she was better but she did have a small heart rate dropping spell. By the time they came to get her at 8:15 she was smiling and sucking her thumb like a mad woman :-) She got a small baby doll from the bunny room.

She came back to the room at 10:45. They started the actual procedure at 9:15 and were done by 10:15. She was asleep when she first got back but it wasn't long before she was awake and looking around. She was much more alert than she has ever been after anesthesia. We had to restrain the leg that the cath was put in. Also, her IV was in her right wrist and they had an IV board on her right arm to keep it stable. Cedie didn't so much appreciate them taking away her use of the leg or her favorite thumb!

About the procedure: Everything went well. Her heart is as good as a heart that has been subjected to a vent for an extended period of time could expect to be. There was no indication that her heart is responsible for her vent dependence. Her PDA opening is very minor and will not require surgery at this point. He had no new recommendations. The biopsy results will take longer.

All afternoon she stayed stable (which is more than I can say for the past few days). She was alert and aside from her aggrevation over her leg and wrist, she was happy.

Tonight she is happy and swatting at her toys. We are all amazed at how well she took today's procedures. GO CEDIE!!!!!!!!!

Monday, 5/1/06- CATH POSTPONED

Cedie had a rough start to her day. However, after a chest x-ray and numerous complaints from me, they finally decided she was swollen with water retention. They gave her a dose of lasics and she was feeling better almost immediately. Her CO2 started coming down and she was not nearly so irritable. She's not up to playing just yet (or CPAP) but she is definitely better off than she was yesterday or even this morning.

Cardiology had an emergency and therefore were unable to get to Cedie today. Her cardiologist has promised that she will be first (8am) tomorrow.