Home Sweet Home

We made it back! Everything went well with Mallory's appointment on Monday morning, we said our good-bye's (a few tears went along with them) at the hospital and RMH and were on our way to Syracuse. We arrived in Syracuse just in time to see Logan's first "at bat". He was excited to see Mom and Mallory and played a great game. Mallory was funny and kept yelling "Yeah Bobo" and clapping her hands. :) Her voice isn't all the way back yet, so it was very sweet. When Madison saw us, she looked at us like we had two heads, but then realized we were really home, gave us big hug and kisses and went off to play with her friends. It was great seeing so many of our friends and neighbors. Mallory was offically Logan and Madison's "show and share" item today at school. She loved seeing all the kids and I was very impressed with the way all the kids kept their hands to themselves. For me, it's back to the Mom stuff and we start our first round of doctors appointments for Mallory tomorrow. She will see her Cardiologist, Dr. Ameeta Martin. We are excited to see her again. She isn't going to believe how pink Mallory is! I promise to keep everyone updated on this blog as to Mallory's doctors appointments and biopsises. (Did I spell that correctly? It looks funny. I wish this had spell check!) Can't wait to SEE everyone soon!

House Cleaning

How do two people-one adult and one toddler-manage to have so much "stuff"? O.K., so there was the weekend visits by Scott and the kids and the grandparents too, but did they all leave more stuff in their wake? :) I have discovered where Madison put all those gum wrappers she said she threw away, and where all the matchbox cars go when Logan is crashing them to make Mallory laugh. I have also found all the rubber bouncy balls that the kids bounced down the hallway and into thier bedroom. It's funny, as much as I am ready to go home, Apartment A has been my home for the last 11 weeks and there have been some very good memories and friendships made here.

A few other "house cleaning" items to address. I know everyone at home is as excited as ever to see the new and improved Mallory firsthand. We know this and are excited for everyone to see her too, but...... We ask that you please remember that Miss Mallory is immune compromised. In a nut shell, we are tricking her immune system into not rejecting this new heart so we need to conitnue to be careful with Mallory over this next year. We ask that you not visit unless you are well, please wash your hands and no kisses on her face or hands. We are very lucky that we are coming home when it is not high cold/flu/RSV season so we will be able to go out with Mallory more than if it were winter time. We know you all will take care to not bring any "bugs" around Mal, because we all know her brother and sister will be bringing enough home for all of us! Don't worry, Mallory will now be around for a LONG time and you will all get your chance to hug on her. Thank you for understanding! We really do appreciate all the support and encouragement everyone has given us. Thanks again for understanding and we will SEE you all soon!

Love,
Wendy and Scott

Good News

We had a very good clinic visit this morning. Not only did we get to see Avery and Tessa, we also got to spend some time with Miss. Becki. That always brings a smile to both me and Mallory's face! Avery and Tessa look great!! We will sure miss seing them at clinic visits when we go home.

Mallory's blood work, Echo, EKG and chest x-ray all came back looking good. She is back up to her weight of 22 pounds, and they have discontinued two of her medications. She will be finished with her Methadone on Friday, so she will be down to only 6 medications. She still has some fluid around her heart, but the amount has not changed since her last Echo on the 10th. This is not unusual. Since Mallory's heart was so huge her chest cavity was larger and when they put the new heart in there was a lot of room left over. The fluid should go away in a couple of weeks or so. If it doesn't it will have to be drained off. That would be an outpatient procedure.

Dr. Canter will see her one more time on Monday. She will get labs drawn, and repeat the Echo to check on the fluid level. If all looks good we will be driving back to Nebraska after that appointment. Scott will fly into St. Louis on Sunday and be here for the Monday morning appointments and the drive home. We can't wait!

Sweet Miracles

DISCHARGED!

As I am writing this Mallory is sitting in her highchair at the Ronald McDonald House apartment eating her second afternoon snack. Actually, one cracker and bite of cheese is going in her mouth and the next it is going onto the floor. Yes, at 2:30 this afternoon we were offically discharged from the hospital! I am exhausted!! I didn't get much sleep last night wondering if today was going to be the day. Everyone hinted all weekend that Monday could be discharge since Mallory isn't hooked up to anything, we know how to give her her meds, they pulled her NG tube on Sunday morning and she is eating so well.

There was some talk about not going back to the RMH until tuesday, but me being the Mom that I am, reminded the coordinators that being in the hospital any longer than necessary leads to a greater chance of secondary infections. :) They just laughed and said, "Yes, we know Wendy".

Mallory is currently taking 9 different medications. You should see our counter! She has a clinic visit on Thursday. At this visit she will have blood drawn to check med levels, have an ECHO, EKG and chest x-ray. Dr. Canter says he may release her to come back to Nebraska on Monday! I am still in shock. I can't wait for our family to be together again. You all won't believe how good she looks! Don't worry, I'll let you all know for sure when we are coming home!

The Light In My Eyes

Mallory continues to amaze all of us! This morning Dr. Huddleston came in to check on Mallory. She was just sitting in her bed looking up at the man in the white coat wondering "what is he going to do now"! He was asking me if she is back to her old self yet, and I was saying she is about 85% there, when all of a sudden Daddy, Logan and Madison came walking through the door. I wish you all could have seen her face just light up! Her big blue eyes got even bigger and she had a smile on her face that lit up the room. She wispered "Bobo, Sissy, Daddy" like she couldn't really believe that they were there. Dr. Huddleston commented that the best medicine there is just walked through the door. :) I agree!!

Mallory is no longer hooked up to anything! Her last IV came out last night, and she no longer has to stay in her room hooked up to monitoring machines. She is free to roam around and go to the play room to visit Miss. Becki. It was kind of unnerving when Crystal, her nurse, told me she no longer needed to stay hooked up. I want to make sure this new heart stays ticking and the telemetry shows me exactly what she is doing. It shows her heart rate, oxygen saturation and respirations, her last blood pressure is also shown. We made it through the night, and I must admit Mallory slept so much better without everything hooked up to her little chest. I guess I just can't believe her oxygen saturation is running between 97 and 99. She was running 78 on a good day at home! The first time I saw those numbers on Mallory I asked if they had it hooked up to the correct child. :)

We had a great day as a family. Scott and Mallory stayed at the hospital while the kids and I took Grandma Marilyn to the airport. We will sure miss her, but hopefully we will see her, and everyone at home soon. We spent the day in Miss Becki's play room, at the rooftop garden and had to stop for ice cream in the cafe. Mallory's nurses are amazed at how much she is eating. Her NG tube should come out tomorrow since she is eating so well. The nurses aren't even going to give her continuous feeds through it this evening. She was getting the continuous feeds from 6pm to 6am. I hope when the kids and I get to the hospital in the morning the tube is out!

Logan and Daddy went with Mallory to physical therapy this morning. Logan has always been great motivation for Mallory at PT. She even started walking again today. Her right foot drags a little bit, but in time and with continued PT she will be back to her old self. Her voice is getting stronger every day too! She has started "shushing" her brother and sister again, so we know the old Mallory is slowly coming back.

Blessings to everyone!!

The Good News Continues

When it rains it pours. This time in a good way. Mallory continues to amaze everyone each day. Occupational Therapy was in to evaluate Mallory and said her muscle tone is good and she does not feel Mallory would need to do OT. The issues we are addressing in physical therapy are endurance, using left arm, holding her head steady and walking again. Anything OT would want to address would also be addressed in PT.

Dr. Canter was very pleased with Mallorys ECHO. In fact he said it looked "fantastic", which is hig praise from him. Mallory has not had as much of a hard time with the withdrawl so they are decreasing her amount of Methadone(sp?). Yeah! They have also decided to only do continuous feeds through the NG tube from 6pm to 6am. She is doing a great job of eating so far. She is her mother's daughter when it comes to food! :)

Mallory went to PT today down in the gym. She had a great time and did well, but tired very easily. Rebecca, her physical therapist is very pleased and amazed in the amount of strength Mallory gains each day. She looks forward to working with Mallory on Monday to see how much stronger she has gotten over the weekend. Mallory will do PT on Saturday and Sunday with a different physical therapist. She is no longer on any IV medications, everything is finally oral. So far she will have only 9 medications when we go home, but that could change, we could go home with more or with less. Lucky for us she has never had a problem taking her medications.

Grandma Marilyn finally got to hold Mallory. I haven't seen my Mom smiling like that in a long time. There were also a few happy tears to go along with it. Mallory's voice and vocabulary are slowly coming back. Her little voice is still very horse but at least she can tell us what she wants. She still uses her sign language as well.

A quick update on our heart friends: Avery brought his parents in to see us when he had a clinic appointment the other day and is doing GREAT! We even got a little smile out of him. Jaden was released from the hospital and is at the RMH for a couple of weeks before they can go home to Oklahoma. Baby Tessa is a fighter too! I think it has something to do with the blue eyes and reddish hair. Hopefully she will be able to join us on the floor in a few days.

Mallory and I are very excited. Scott is bringing Logan and Madison down to see us this weekend. I am sad that my mom is going home, but Dad ran out of pancakes this morning so she has to get back to take care of him. Hee hee:). It was great having Mom here. It doesn't matter how old you are, sometimes you just need your Mommy.

Our prayers for today not only include our heart friends, families, and loved ones, but include all those graduating this weekend. We also pray for all the mothers this Mother's Day weekend. I am saying extra prayers for those Mommies who gave the most selfless gift of all. That is the gift of life to kids like Mallory. Thank You Mothers of Organ Donors!

Our New Digs

We moved out to the step down unit yesterday afternoon and were welcomed with open arms by nurses who have taken care of Mallory before. I took advantage of holding Mallory every second I could. I've held her so much Grandma hasn't even gotten a chance to yet. :) We will have to work on that today.

Mallory is still being fed by an NG Tube, but was interested in drinking water last night and took 2 small bites of an animal cracker. She was having a bit of a tough night because she is offically in narcotic withdrawl. :( Her Methadone does help some but we had to give her an extra dose to take the edge off last night so she could sleep, and Mommy too! she woke up this morning in a good mood. she still isn't talking much. Just saying "no" and "Mama". Her throat is still very sore and it will just take time to get her old voice back.

Mal went for an Echo, EKG and chest x-ray this morning. I can't tell you how wonderful it was to see the ECHO of her new normal heart. I am just amazed!

She had fun at physical therapy this morning. Rebecca came to play in the room and feels in a couple of days Mallory will be ready to come to the PT Gym for her sessions. Tomorrow she will try a wagon ride during PT to help her strengthen her neck muscle and be able to hold her head straight. Since Mallory was paralyzed and lying for two weeks she almost has the appearance of a small baby who is trying to hold their head up and not flop around. This morning she is much more sturdy and even held her own sippy cup for a few seconds! Way to Go Mal! Tomorrow we will quit the continuous feedings through the NG Tube and try working on solids. She will get a certian amount of nourishmnent through the tube every couple of hours until she is eating everything on her own. She will be looked at by one of the neurologists today to get a feel of what kind of Physical and Occupational Therapy she will have to do once we get home.

Every baby step she is taking is getting us one step closer to the Cornhusker state! I know we will have a lot of work to do when we do get home, but at least we will be with our family and friends. I'll continue to let you all know what new baby or big girl steps Mallory continues to take. :)

Results

The results are in. Mallory's biopsy came back a Grade Zero-NO SIGN OF REJECTION! I can't even begin to explain how happy we are right now! She also had the ET tube taken out and all IV medications have been stopped. :) She will be on a series of Methadone treatments so she will not go into withdrawl from all the narcotics she was on. Yes, they made my daughter an addict! :) She had a good night and did not show signs of withdrawl, yet. Everything went well with the heart cath too. Her pressures are a little on the high side but they expected that and feel they will come down to a normal level in time.

Mallory will be moved out of the CICU today. Yes, we are making the move to the step down unit! This is an exciting step. She will continue with physical therapy and music therapy daily. I have to run, Mallory is also getting her pacer wires out and Stephanie is here to do that! I'll update again soon!!

Hurry Up and Wait

Last night was an interesting night. I waited until Mallory fell asleep and then drove Mom back to the RMH. When I got back to the hospital Mallory was in "soft" restraints. While I was gone, Mallory decided it was time to take the ET tube out. She had taken the tape off one side of her face and had her hand wrapped around the tube ready to pull when her nurse walked in to check on her. She also was pulling at her pacer wires and the dressing on her chest incision. She's just telling the doctors and nurses she is ready to go! :) While I was in the room with her she did not have to have her hand in restraints. They did however, give her a little something to make her sleepy. She slept well the rest of the night.

The hardest part of her being awake and having the ET tube in, is she is communicating with me with her big blue eyes and the small amount of sign language I have taught her. She was signing Please and then pointing to her ET and NG tubes and had big tears running down her cheeks. It broke my heart!

When you are in a specialized unit in the hospital you get to know your neighbors. Most of which are Mom's, not all but most. I have struck up a friendship, or should I say kinship with Janice, better known as Tessa Marie's mom. Tessa is 7 months old and waiting for a new heart. Last night Tessa and Mallory shared a nurse, Kathe. Kathe came into Mallory's room at 10:15 and said "When you get a minute Tessa's mom would like to talk to you". Mal was asleep so I went right next door. Janice was crying when I walked in (and so was Tessa). I asked her what was wrong and all she could do was shake her head for a minute, catch her breath and then told me, "They have a heart for Tessa". Then I started crying. Tessa has been listed for 11 days and was told she would be lucky if she made it waiting for a heart. Tessa was back up to the CICU with her new heart by noon today! She is not out of the woods yet because the heart was out of body for 4 hours, but she made it through surgery and that is the first of many baby steps. I know you will all say a little prayer for Tessa and her family.

Back to the Princess. :) She did very well through her heart cath. Dr. Balzer did the cath and told me her pressures were a bit high but they expected that and he feels these numbers were lower than what they would have been a week ago. There is no blockage and they did get the samples for the biopsy. We wont know what the results are until later today. She was the first case this morning so results should be in by 5pm. As usual they had to give her a large amount of sedatives to get her to sleep, so it is taking her longer to come out of it. Since she is still asleep the ET tube is still in. She is chewing on it as I am writing this. We are still hopeful she will get that tube out today. I'll let you all know resultsas soon as I know something.

Mallory may be a TV star yet. Today was the ribbon cutting ceremony for the CICU. The local news stations were here and they took some pictures of Mallory in her CICU room after she came back from the cath lab. She actually had a hard time getting to her room because there were so many people in the hall from the ceremony. Mom and I got to meet Maxine Chase and Bob Fox, founders of Build a Bear Workshop. Bob even gave us hugs!

Let's Just Wait

Mallory had a good night last night. The plan was to extababe her this morning. As most of you know things can change in a heartbeat when you are in the hospital. Mallory is doing great and breathing on her own, but at rounds this morning it was decided to wait until tomorrow after she returns from the cath lab to extabate her. Reason being if she had any trouble during the cath they would already be in and wouldn't have to do it again. Stinks for me but it's best for Mallory.

Mal had one of her IV lines go bad during the night so it was taken out and a new one placed in her right foot. Our wonderful nurse Diana got the IV in one stick. YES! She now has IV's in both of her feet. She couldn't walk around even if she wanted to! She is a trooper. She is taking a nap right now and I told her to sleep all day today and that would make tomorrow come sooner. :)

Tomorrow is the ribbon cutting ceremony for the new CICU. The televison news will be all around and they have asked if it's o.k. to videotape Mallory and her room. I said yes if we are not in the cath lab. To bad it's local news that won't be able to be seen at home.

The rest of the day is going to be spent being "the quiet kid" on the floor. Dr. Canter came in and was actually smiling and asked how it felt not to be in the CICU's most critical top 2. We said we LOVE it! She hates when she has to be suctioned out and usually bites the tube. That should make her first dental visit very interesting, right Dr. Gutz?

Thanks again to everyone for all the words of encouragement and parayers. Our prayer for today and tomorrow is to be the quiet kid with no "issues" and to get good results from the cath and biopsy!

A Nice Quiet Day

When you or a family member are in the hospital you forget what day it is and what time it is. You also forget there are really people who work Monday-Friday. The weekends at the hospital are so quiet! There isn't the large number of "White Coats" walking the halls as on a weekday. This is very nice. Saturday was a very busy, but quiet day. Mallory continued to do well when her vent settings were lowered. She had a line taken out of her groin, and she participated in her Chest Percussion Therapy (CPT). She was awake most of the day and at 5pm decided to finally take a rest.

Scott and I made the hard decision that it was time for him to go home for a week. Logan and Madison have a concert at school and Madison's 6th birthday is coming up, so she is having a friend birthday party, Scott also has to catch up on some work and farm things. When Scott was out of Mallory's room getting something to eat I had a little talk with my nursing friends. I asked if it was against the rules to hold Mallory while she was intabated. She was laying in bed reaching her arms out to us to be held and I couldn't stand it any longer. You know what they said? They said GO FOR IT! :) When Scott got back to the room the stage was set and I told him he was going to hold his little girl. I wanted Scott to do the first holding since he didn't get to see her prior to her going into surgery. You should have seen his face! He was so excited! You would have thought I just told him I bought him a new backhoe. With the help of three nurses, Burt, Tara and Corrie,to move Mallory and all her "stuff" that is attached she was in her Daddy's arms and so content. She even slept for awhile. Daddy didn't want to let go of her either.

Since we knew Scott would be going home I had called my Mom. So Larry, Marilyn and my Uncle Bob Brown came to St. Louis on Saturday. Uncle Bobby came to ride home with my dad. Thanks Bobby!! My Mom is going to stay with Mallory and I for the week. This way I can spend the night at the hospital with Mallory and when my mom gets to the hospital in the morning, I can go shower and she will stay with Mal. Scott is planning to bring Logan and Madison to STL with him on Saturday so they can see Mallory and me.

This morning (Saturday) Mallory was weighed and she is now 10.8kg. Take that times 2.2 and you have her weight in pounds. :) The vent and nitrous have been decreased (Vent to 8 and Nitrous to 1 for those medical people reading) and Mallory is a pooping machine! She has pooped 5 times already today. It's so nice I get a break from taking care of the poop. The nurses change the diapers and then have to weigh them to chart Mallory's output for the day.

The plan for the rest of Saturday is to continue to take the baby steps. Turn the Nitrous off, continue to go down on vent Rate and peep, and plan on doing pressure support. Pressure support is when they turn the vent and peep almost off, let Mallory do the breathing on her own and only give her the support when she absolutely needs it. The doctors would like the vent to come out on Monday. Mallory will also start some Physical Therapy on Monday so we can get her moving again.

A good friend of mine, Jo Schmidt, sent these words of encouragement to me. "The will of God will never take you where the power of God will not protect you". I remind myself and Mallory of this each day. God's blessings to you all!!

She's Got The Beat

Oh Happy Day!! At 2am Friday morning Mallory's pacemaker was turned off and she is holding her own! Her heart rate and blood pressure is right where they want it to be. Go..Go Mally..Go go , go Mally!!!

Her vent setting has also been turned down again, and the chest tube they put in at the surgery is out. She has even gotten rid of another medication to make her heart work better, and the last medication, Milrinone, is being turned off today (Saturday). She will only have one light on her "christmas tree" blinking and that is her pain medication. :) Mallory is moving her legs and arms and giving Mommy and Daddy's fingers a little squeeze now and again. She still loves to have books read to her and is trying so hard to point at the pictures.

The Cardio team is very happy with the way Mallory's heart is working. Now we just need to continue working on her lungs and get the rest of the goop out. The Respitory people do CPT every four hours. We still call it her "spa treatment". She doesn't mind the pounding on her chest and back and has even slept through a few treatments. Now the suctioning after her spa treatment, she does not like. She tries to bite the tube.

The new attending on the CICU floor is Dr. Alan Doctor. Yes, that is really his name. :) I wonder if anyone has said to him; Dr. Doctor, give me the news.... :) He wants to continue to take things very slow for Mallory and let her tell us how much she is able to take. As he said, Mallory has made a lot of progress and he doesn't want to push to hard.

The plan for Saturday is to continue to turn the vent rate down bit by bit in preperation of getting the ET tube out, get rid of the Milrinone and Foley cath., continue CPT and suctioning to get the goop out, and take a line out of her right groin. That is a big day! I know Mallory will get through it without any problems.

Mallory is scheduled for her first biopsy and heart cath. on Tuesday. I am very nervous about this. The biopsy will tell us if she is rejecting the heart in any way. Just by looking at the numbers and the way she looks I don't think she is rejecting, but then again I'm not the doctor with special machines and years of training. I'm only the Mom who knows her and has read the transplant education book they gave me over and over again! :) We will just wait and see. During the cath they are going to take a little extra time and check out the flow to her lungs and see if there is anything to be concerned with.

Our prayer for today is that Mallory continues to get the junk out of her lungs and continue to turn down the vent settings with ease. We continue to pray for guidence for the Doctors and Nurses involved in her care and strength for Malloory, Scott and myself. We pray blessings on Logan and Madison and pray for our family to be together soon. Blessings to everyone reading this and praying for our little Mallory and the rest of our family.

A Better Day

Mallory had a good day. A nice quiet day. The doctors read her x-rays and decided an additional chest tube was not needed. YIPPEE!! She peed like a champ! She peed so much they are going to cut back on the medicine that makes her pee. She has also had a couple of other medication doses cut and another cut out compleately.

The vent has slowly been turned down throughout the day and Mallory is maintaining her blood pressure and oxygen saturation levels and the amount of oxygen she is given has also been turned down. Dr. Canter decided it was time to turn her pace maker to standby this afternoon. Throughout the day he had slowly turned the pacer down to see what she could do on her own. She paced on her own for about an hour and a half then her BP and saturation levels started to drop. The pacer was turned back on, not as high as before, and her BP and saturation levels came back up. She had some long periods of wakefulness today. It's always nice to see those blue eyes smiling up at us.

It was a great day. Mallory took some great steps and the doctors didn't push too much. She did have a bunch of goop suctioned out of her throat that she is coughing up. Yech. But its better to have her cough it up than throw it up like this morning. Keep taking those baby steps Mal Mal!!

Step By Step

On Wednesday the doctors fianlly realized that Mallory can only tolerate one change at a time, something her Daddy and I have been saying all along. :) They decided to take it easy on her and start the process of thaking the Nitris off. By 1pm it was off and she was holding steady. By 4:30 pm her oxygen saturation levels had dropped, and by 5:30 pm she was back on just a "wiff" of nitris. The doctors told us this was not a step backwards, and a lot of transplants need that, and she is continuing to make progress. She is retaining a lot of fluid. Dr. Canter was calling her Rocky because her eyes were so swollen, so they have given her extra doses of medicine to make her pee. Pee away Mallory, pee away!!

I just think Mallory is sick and tired of having her picture taken. When Radiology came in this morning to get her chest x-ray, she vomited. We got her bathed and sheets changed, Radiology came back for one more picture and sure enough, she puked again. After one more bath, this time with a hair wash, her nurse and I decided the rule for the next few hours was going to be "NO TOUCHY DA BABY". This all happened around 4am so she had a few hours before the doctors all came to see her during rounds at 7am.

One area of concern for Mallory right now is if there is fluid built up in, or around her lungs. Thus the extra x-ray. As of this writing we do not know what the result of the x-ray is. If the fluid is between the chest wall and the lungs they will have to insert a chest tube to drain everything off. We will just have to wait and see.

Mallory's heart boyfriend, Avrey, is going home today!! Hooray for Avrey!! He had his first biopsy on Tuesday and results came back showing no rejection of his new heart. He will continue to be monitored in the clinic at SLCH. They will be back next Thursday for the clinic appointment so we will see him then. We continue to pray for Avrey and his parents and wish them nothing but the best. If you would like to get to know Avrey, his web site is: http://groups.msn.com/AvreysBrokenHeart/ Check them out and see what an outstanding family they are!

Today we are hoping to get the rest of the extra fluid off of Mallory that needs to go, and to start going down on her vent settings in hope of getting that tube out in the next few days. When she is awake she is very aware of what is going on and who is in the room. It breaks my heart when she tries to talk but can't because of the vent tube, or when she cries and no sound come out but there is a tear and she contracts her face and body. Yesterday we put her favorite DVD in, Mickey Mouse Clubhouse. When she heard Mickey say "Hi, I'm Mickey Mouse" her eyes lit up and she moved her head to find the TV screen. :) Baby steps, baby steps.

Thank you again to everyone for the comments and words of love and support you post on this site. Scott and I love reading them! Thanks also for the little snipits into Logan and Madison's day. I can't tell you how much Scott and I are missing them. They are missing us too. As Logan has said on occasion, right now it's all about Mallory but it doesn't make it any easier on the other kids. Thank you to everyone who is helping Logan and Madison get through this very difficult time as well. Much love to you all!!

Finding A Balance/The House That Mallory Built/Continued Baby Steps

(Post for Tuesday May 1st since Wendy went home and fell asleep on the couch!)

Happy May Day and Happy Anniversary Papa Kenny and Grandma Jan!

I love the night nurses- day shift too, but the night nurses must buy their shoes at a different store than day nurses. I swear there is a Stelth shoe store that only night nurses know about and are allowed to purchase shoes at. When they even enter the store they must be a card carrying member. :) Jen has purchased those shoes. While I was snoozing in the chair Jen was providing "excellent nursing care" to Mallory. I use quotes because Tara, her day nurse, told Dr. Huddleston when he asked what contributed to Mallory's turn around the day we thought we were going to put her on the EHMO Machine, she replied "excellent nursing care". :)

Anyway.... While I was snoozing, Jen was turning down medications, turning Miss Mallory so drainage in her chest wouldn't pool in one spot, talking softly to Mallory, making sure she wasn't in any pain and cleaning up vomit. Mallory's drugs reallly got out of her system and she was fighting the vent tube because it's a bit irritating, and she threw up so old blood and junk. She didn't throw up any of the feeds that are going directly into her stomach through the NG tube, so that was a good sign. They started giving her Pepcid to help with irritation and a bit of Versed to calm her down. It is such a frustrating balancing act. You want Mallory to be awake and starting to move around, yet you don't want her so awake that she is fighting the tube.

Mallory did receive some blood this morning and her numbers look great. Dr. Canter came in this morning and messed with her pacemaker. She was still junctional, which means her heart is not initating it's own heart beatyet. She is still depending on the pacer to do it for her. It's an electrical problem with the heart and nothing to do with the mechanics of her heart. Her mechanics are getting better. That lazy right side is starting to pick up some of the workload like it should and is pumping better.

At 12:30 You started working around the pacer so they turned it off. I came back from showering at the apartment and you wern't being paced. Talk about a shock. I know Mallory heard Dr. Canter talk about her being junctional and she said "I'm going to show him!" In Dr. Canter's words, "it's like building a house, the electricity is working, the plumbing is getting better and the mechanics will be her soon." Amy, You can tell Molly the switch is on! :)

Plumbing. Yes, right now after any care giver looks at her monitor to see what her heart rate, etc. are running, they ask "Is she peeing? Did she have a BM yet?" So today our goal is to work on the plumbing. She needs to continue to pee, not tot much but not to little and she needs to poop. They are going to help her along with that one. Thats why they wear goloves. Ha Ha :)

5pm Rounds: Things are looking better in some spots than others. It's finding that balance again. The Docs have taken her compleatly off another med, and lowered her ven and nitrate rat. They did need to turn her pacer back on because she hasn't peed enough today and she is retaining the fluid so her heart is working harder and it's harder to breathe. They gave her an extra diuretic and turned her vent up just a tad until she starts peeing again. I told you its a game of balance. Scott was afraid Mallory was taking a backwards step. I told him as I was told, it's not a backwards step because not all the lights on the christmas tree are blinking. The pole next to Mallory's bed holds all the medication pumps, 12 pumbs in all. At one point all those pumps were running some form of medication through them and their lights were blinking. Not all of those lights are blinking right now, so that is a big step for Mallory. She is in a good place and well into recovery. Now lets get her off the vent!

Some of you might or might not know this. Mallory not only shares a birthday with her cousin Trey, but with her Great-grandmother Hilda Steinhoff. I love my Grandma Steinhoff so much! I have so many wonderful memories of her and have always told Mallory that Grandma Steinhoff is her Guardian Angel. My cousin Billie Jo wrote to me and said that Mallory's baby steps remind her of the game of "Mother May I" we always played in Grandma and Grandpa's front yard. Grandma would sit on the front porch snipping green beans she had just picked out of her garden and say, "Wendy, take 3 baby steps forward" . I feel Grandma is playing that game with Mallory right now. She's up there saying "Mallory, take baby steps forward today little one, I'll be watching out for you".