Sawyer's School Pictures '11

You don't realize how strong you are until its your only option...

I have this notebook upstairs that Landon's grandma and I wrote journals in during the week of Landon's surgery.  I'm always worried if we'd have a house fire or something it would be destroyed so I'm going to put it here in my blog "just in case".

          I called Dr Finta, Landon's cardiologist, on Friday morning because Landon had been having cyanotic episodes (tet spells) for 3 weeks.  They weren't too bad at first.  He would just cry when he got a belly ache after eating occasionally.  They came more frequently by this last Friday (4.21.06).  After almost every bottle.  He would scream and cry and turn so blue.  It scared me and Ronnie so bad!  Dr Finta told me to bring Landon to Marshfield right away so she could see him and check him over.  I called Ronnie and Paulette to tell them what was going on.  Paulette and Ron were on their way back from Minnesota.  Dr. Finta checked Landon out and we decided to move his surgery up from May 9th to April 26th.  I fed Landon a bottle during our appointment and Dr Finta asked me to wait in the room to see if he had a tet spell so she could monitor him during it.  Sure enough about 10 minutes later he started crying and screaming and turned blue.  The nurse called Dr Finta and any nurses that were available.  Hearing her yell "stat, stat, stat" it really hit me how bad this might be.  They put the pulse oxymeter (checks oxygen levels and heart rate) on and his levels were in the 20's and 30's.  They're supposed to be 90 at the least.  They put oxygen on him right away and I held him trying to get him to calm down.  His oxygen levels came back up.  Dr Finta called the doctors in Milwaukee and then came to talk to me.  She wanted Landon to go to Milwaukee immediately so they could monitor him through the weekend and then have surgery on Monday.  They wanted to fly him in the helicopter but storms were developing so they decided it was safer to go in an ambulance.  Dr Finta stayed with Landon so I could call Ronnie, Paulette, and my parents to tell them what was happening.  Ronnie left Mosinee right away to come to Marshfield.  My mom was conveniently visiting family in Waukesha and decided to stay and meet the ambulance at the hospital.  We walked through the hospital...monitors, oxygen tanks, doctor, nurses and me up to the NICU so he could be prepped for the ambulance ride to Milwaukee.  They put an IV in and he, of course, cried because people were holding him down and sticking him with needles so that induced another tet spell.  Watching all this happen around you and not being able to console you're 3 1/2 month old baby is the most helpless terrifying experience I have ever had.  Ronnie came in during all of this which really upset him.  We were both crying and trying to be strong for each other and Landon.  Once they finally got the IV in and started the pain medication Landon got very sleepy.  The ambulance crew came in and got him strapped to a gurney and we left.  I had nothing but the clothes I had worn to the hospital.  Paulette met Ronnie in front of the hospital and they went back to their house to pack before they headed to Milwaukee too.  By the time they got home Shelley (Ronnie's sister) had most of their things packed and ready to go so they were able to leave almost immediately.  She had even printed off directions straight to the hospital for them.  Once we got on the road to Milwaukee in the ambulance (I rode shotgun...I wasn't allowed in the back in case Landon coded) I called my mom again to update her.  Her and my aunt Fran called the Ronald McDonald house and made reservations for us.  They packed me a suitcase of Fran's clothes and some toiletries since I didn't have anything.  I called Ronnie a few times to let him know how Landon was doing.  One of the paramedics with Landon would come up every little while to tell me how Landon was doing.  At one point Landon's oxygen dropped very low and they had to bag him (breathe for him).  He started to wake up some so they gave him some sedation medication.  They didn't work so I had to listen to him cry for the last hour of the ride.  He was hungry but they didn't want him to eat anything in case he needed surgery when we got there.  We did try 2 ounces of formula but it wasn't enough.  We arrived at Froedtert Hospital.  We had to go in through the ER and then transferred over to Wisconsin Children's Hospital.  Landon was admitted to the Pediatric Intensive Care Unit on the 3rd floor, room 15.  They were poking and prodding him and giving him medications through his IV.  He was still hungry too so all of that started another tet spell.  His pulse was 215 beats per minute and his oxygen saturation was only in the 30's and 40's.  They brought in all the supplies to intubate him but his oxygen came back up.  My mom and aunt Fran and uncle Bob came in then and mom held me awhile while I cried.  Bob took me to check in at the Ronald McDonald house because I had to check in by 7.  They gave me a tour and went through all the rules.  We went back to the hospital and I could hear Landon crying as we walked down the hall.  He was having a tet spell while Mom held him and tried to calm him.  I took him from her and was able to calm him down.  Ronnie and Paulette arrived and Mom, Fran, and Bob left.  I took Ronnie to the RMH to show him everything and explain the rules of the house.  I put some pajamas on to spend the night in Landon's room.  Landon was calm with Paulette so Ronnie and I went to the cafeteria to find something to eat. Ronnie and Paulette went back to the RMH and I went to bed.  Landon woke up 3 times during the night but didn't have any tet spells.

   We were up at 7am and Ronnie and Paulette came in at about 7:45am.  The day was pretty uneventful compared to Friday.  Landon had a good day playing and laughing. 

No tet spells.  The nurses and doctors came in and explained how the day of surgery and the surgery itself would go and what to expect afterward.  They did an echo cardiogram (ultrasound of the heart) in the morning so they could be certain of everything that was wrong with his heart and the best plan to fix it.  I went to the RMH, took a shower, and got dressed for the day.  Mom and Grandpa came in the early afternoon and Landon was baptized. 

The Chaplain also blessed a prayer shawl and gave it to Landon.  I think we'll send it into surgery with him.  After Mom and Grandpa left Ronnie and I went and found a Kmart and a Pick-n-Save to get some supplies and groceries.  We unpacked everything at the RMH and went back to the hospital.  Landon was sound asleep.  Ronnie and I went to the cafeteria and got something to eat.  I called everyone to tell them how Landon was doing.  Landon was asleep for the night at 10pm.  Paulette and Ronnie went back to the RMH for the night.  I laid in bed for a little while trying to watch the race but I couldn't keep my eyes open.  The nurse came in at 12am to check Landon's vitals and he woke up.  He played for a little while and then ate and we both went back to sleep.  The nurse came in again at 4am to check vitals.  I woke up but Landon didn't.  We both woke at about 7am. 

       It's Sunday now.  The surgeon came in this morning.  Dr Mitchell.  He explained all the risks of the surgery and specifics about what they were going to do.  After Ronnie and Paulette got here I went to the RMH to get dressed for the day.  When I came back to the room a nurse came to draw Landon's blood to do some labs before surgery tomorrow and to check his blood type.  He's O+ just like me.  They told us Landon has to get donor blood because he'll be on the bypass machine. 

The anesthesiologist, Dr Toshynski, came to explain the medications they would give Landon before surgery to relax him and put him under.  He told us Landon's breathing tube would be in his nose because they put a camera down his throat to take pictures of his heart.  Landon will be going to surgery at 8am and will hopefully be back in the PICU at 3:30pm.  Dr Mitchell's physician assistant, Elliot, came in to go over more about the surgery with us and answer anymore  questions.  He told us on a 1-10 difficulty scale Landon's surgery would be an 8.  He told us Landon would have a 50% chance of having his breathing tube out when he came out of surgery.  It was reassuring to hear because I didn't think there was any chance of him having it out.  One of the nurses came in to give Landon and antibacterial bath so he was fresh and clean for surgery in the morning.  My aunt Tina, uncle Mike, cousin Diana and her boyfriend Joe came up to visit for a little while.  Diana brought me some extra shirts.  Diana and Joe are coming back tomorrow to sit with us during Landon's surgery.  Ronnie and I went for a walk so I could call Amber, Heather, Jake, and aunt Fran.  Heather is planning to come tomorrow too when she gets done with work.  Fran and Bob are coming tomorrow too.  I talked to aunt Vicki yesterday and she is going to stop in about 2pm.  Earlier today Ronnie and I went to the gift shop and bought Landon a teddy bear to keep him company during surgery and a huge Elmo balloon for in his room.  Its really cute and its eyes even wiggle. 

Ronnie and I went to the RMH for a complimentary dinner that a class from a local school made.  Turkey and gravy on a bun, corn, mashed potatoes, and a dessert bar.  It was sooo good.  I took a shower and got clean clothes for tomorrow since I won't have time to go change before surgery in the morning.  When we got back to Landon's room my cousin Sarah and her friend Tammy were visiting with Landon.  They didn't stay long, they had already been there an hour.  They are coming back tomorrow too.  Ronnie and Paulette went back to the RMH at 11pm right after Landon fell asleep.  I stayed up because I needed to feed Landon one last bottle at 11:45.  Nothing to eat after midnight.  He only ate half an ounce he was so tired.  The nurse came in at midnight and washed Landon's chest and belly with an antibacterial scrub.  It woke Landon up but he was happy, talking, laughing, and playing.  Afterward he wouldn't go back to sleep.  He started to get hungry and fussy so the the nurse gave him a dose of morphine and he went to sleep shortly after.  The nurse was in at 4am to check his vitals but he didn't wake up.  At 6am I got up when the nurse came in again to do a second antibacterial scrub. 

He got fussy again afterward so she gave him dose of morphine.  He was still restless after a little while so she gave him a little more.  Ronnie and Paulette arrived and Landon fell back asleep.  The chaplain came in and said a prayer.

           At 8:20am Dr Toshynski and two nurses came in to take Landon to surgery.  We all gave him a kiss.  He had his teddy bear to keep him company.  Dr Toshynski gave him a little medicine to keep Landon asleep.  I was happy about that because the last thing he'd remember was falling asleep in my arms. 

Lisa, Dr Mitchell's surgical nurse, came to the waiting room at 9:50am to tell us that Landon was asleep and they were starting surgery.  I worked on the computer trying to start typing this out but couldn't stay focused enough.  Lisa came back at 11:15am to tell us they were putting Landon on the bypass machine.  At 12:15 she gave us another update: Dr Mitchell was done putting the patch in his heart and was now working on making his pulmonary valve bigger.  I went for a walk to call my family.  When I came back at 12:45 Lisa was talking to Ronnie and Paulette.  They were done with the surgery and did the echo cardiogram and every thing looks good.  Ronnie and I went to the cafeteria and got manicotti and garlic bread for ourselves and Paulette.  We called Ronnie's family...Vicki, Shelley, and Ron to tell them how things were going.  When we got back to the waiting room my aunt Vicki was there.  We ate and visited for awhile.  Diana and Sarah came a little while later and Vicki left. 

At 1:40 Dr Mitchell came to tell us everything went well.  He said he might have to have his pulmonary valve replaced when he gets bigger but things look really good for now.  At 3:00 Lisa told us they were going to be wheeling Landon by on the way back to the PICU.  We all waited for him to pass in the hallway.  He looked really good.  He looked comfortable.  Of course he had all kinds of tubes and IVs and monitors but he didn't look sick.  We waited about an hour before we could go back to his room.  The nurses were monitoring him and getting everything in the room situated.  I went outside and called everyone to let them know he was out of surgery, that we got to see him and that he looked good.  4:15 we went were able to go to his PICU room. 

He has an IV line in his neck, one in each wrist, and one in his right foot.  He has 11 different medications and pumps.  He has two heart IVs to put medication right in to it if needed.  He has two pacer wires sewn to the outside of his heart in case his heart starts beating funny.  They'll be able to fix it with an external pace maker.  He has a chest tube to drain the blood out of his chest and he has a catheter.  He opened his eyes a little but he's really drugged up yet from the anesthesia and pain medications.  He cried a little and that was hard to hear.  His little voice hardly made a sound.  He was so hoarse from the camera and ventilation tube that ran down his throat. 

He's getting morphine to control his pain.  Heather came up for a couple hours.  When she left Franny came.  She was so happy to see Landon's oxygen levels in the 90's.  Friday night when she had been here he had that tet spell and they were in the 30's and 40's.  She left about 8pm.  I changed into my pajamas.  We got the room situated (had to work around all the IV's and monitors) and made my "bed".  Ronnie and Paulette just left and I'm going to bed.  It's 10pm.

         Tuesday - I think I got 3 or 4 hours of sleep between nurses coming in, IV alarms, monitor alarms, respiratory therapists and treatments and Landon up crying in pain quite a few times.  He would cry and cry.  He was hungry too.  Around midnight the nurses let me give him an ounce of pedialyte.  It wasn't enough but they wouldn't let me give him anymore.  At 4:30am the radiologist came in and took a chest xray.  I think about 7am one of the doctors came in and took out Landon's heart IV lines.  I don't think Landon felt a thing because he slept right through it.  I tried to go back to sleep but the doctors and nurses were in and out constantly.  I was just drifting off to sleep when Ronnie and Paulette walked it.  Ronnie brought me a cappuccino and thank goodness too because I NEEEDED it!  I had intended to leave for the RMH right away to get a shower and take a nap but the nurse came in and told us Landon could have a bottle the next time he woke up.  I stayed because I knew he'd wake up in 1/2 an hour or so.  When he did, he drank half the bottle.  I called a nurse and she helped us sit Landon up carefully to burp him. 

He drank the rest of the bottle and Paulette and I sat him up and burped him ourselves.  Landon went right back to sleep.  My cousin Glen called from Arizona to check on how things were going.  I left for the RMH and slept for an hour and a half.  I got a quick shower and went back to the hospital.  I checked on Landon and Paulette was feeding him another bottle.  I helped her sit him up to burp him and then went to the cafeteria to get something to eat.  We didn't do much all afternoon.  Landon is sleeping a lot.  I tried to take a nap but only slept a little while.  His nurse came in to tell us his catheter and arterial IV could come out.  Landon did such a good job and barely made a peep.  He's down to 2 IV pumps from the 11 he started with.  His doctors can't believe how good he's doing....eating 2 1/2 to 3 ounces the day after surgery.  Ronnie and I went to Red Lobster for supper.  We stopped at Walgreens to have all our pictures we'd take developed.  Both our memory cards were full, 146 pictures!  Had a very good supper at Red Lobster.  The waiter forgot our salads.  Probably wouldn't have ate much of it anyway.  I'm so full!  We got Paulette some shrimp pasta to go.  We picked up the pictures and went back to the hospital.  Paulette said the phone had been ringing nonstop since we left.  Fran called because Diana's water broke (she was 38 weeks pregnant) and she was at the hospital having the baby.  My cousin Quentin called and was going to call back later and Glen called again and I have to call him back.  Quentin did call back a little while later.  He's probably going to visit later this week.  Uncle David called and is also going to try to stop later in the week.  Landon got really fussy and his nurse asked if I wanted to hold him.  The earlier nurses said I wouldn't get to hold him for a couple days so I was surprised and ecstatic when she offered.  I sat in the rocking chair and she him to me.  It felt soo amazing to have him in my arms.  Landon must have been just as happy because he fell right asleep! 

Landon's nurse came in again to inform us that Landon was doing well enough to move to upstairs to the Intermediate Pediatric Intensive Care Unit. She had to take out his central line in his jugular before he could go up though.  Ronnie and Paulette got all our stuff together while she took out the IV and hooked Landon up to all the portable monitors and away we went.  Just as we were wheeling out of the room Landon opened his eyes a little to look at me and gave me a big smile!  The first one since his surgery and I bawled my eyes out.  Such a relief to see that happy face.  He gave Paulette and Ronnie a little smile too when they talked to him.  We were all settled in the new room by 10:30pm.  Its a nice room.  Much bigger and we have our own bathroom.  I can use the shower here now.  In the morning Ronnie and Paulette will bring my clothes and things over with them.  Its about 11pm.  Ronnie and Paulette just left to go back to the RMH for the night and I'm going to bed.

    Wednesday 4.26.06 - Slept much better last night.  Its a lot quieter up here.  They took the IV out of Landon's foot this morning.  He had another blood draw and chest xray too.  His doctor came and said if his EKG looked good today they would take out his chest tube and pacer wires.  Fran came about 8am.  She brought Landon a pony.  Ronnie and Paulette got here about 8:45.  Fran was holding Landon in the rocking chair and all of the sudden she yells Oh MY GOSH, he's leaking, he's leaking!  His diaper leaked all over her.  down the rocking chair and onto the floor.  She left about 10am and we went to get something to eat.  They did the EKG and it was good so they had a step out for 10 minutes to take the lines and tube out.  We heard a little cry but they were done quickly and Landon was fine when we got went back in. 

About 1:45pm I left to go see Diana and baby Gavin at Waukesha Memorial.  Got lost for almost an hour but finally did find the hospital.  I visited with them for almost an hour.  Aunt Tina led me back to Blue Mount Rd so I could find my way back to Children's a little easier.  I stopped at Kmart to buy Landon a onesie and a sleeper to go home in.  While I was gone a lady from the research department dropped off a huge survey that will help with Congenital Heart Defect research.  She is going to come back tomorrow.  I went and got something to eat.  Sabrina my cousin came up to visit and left about 8pm.  I fed Landon and Ronnie and Paulette left at 9pm.  Landon woke to eat at 11pm and got a breathing treatment.  He's finally back asleep so I'm going to bed.

Thursday (4.27.06)   I woke up to Landon fussing at 5am.  I tried to feed him but he wouldn't eat. I asked the nurse to bring him some Tylenol and she said he woke at 4am when she did his vitals so she fed him 3 ounces.  I never even heard her!  That's why he wouldn't eat for me.  So we played for 20 minutes or so and then I went back to bed.  He was still awake but sleepy.  He must have fell asleep on his own because he was sleeping when the lady from the lab came in to draw his blood. He did well.  5 minutes later the radiology tech came in to do a chest xray and then respiratory therapy for a breathing treatment.  We were able to go back to sleep for a little while.  The nurse came in at 8:30 to check Landon's vitals.  We were both up for the day after that.  I asked if I could give Landon a bath.  He hadn't had one since Sunday before surgery.  She brought me all the supplies.  Just as I got him undressed Ronnie and Paulette walked in.  About 9:15am.  I gave him his bath and the nurse took out his last IV.  I got him dressed in some tiny hospital pajamas. 

I rocked him while I fed him and the nurse made his bed with clean sheets and blankets.  He drank the entire bottle but coughed and gagged a little and then threw it all up.  All over himself, me, the rocking chair, and the floor.  The nurses helped me rewash him and change him.  I fed him 2 ounces and he fell asleep.  His doctor said his chest xray looks great so no more breathing treatments.  Landon hasn't pooped since before surgery so we decided to give him a suppository which worked well.  I'm sure that will help him be more comfortable.  We went and got lunch then went for a walk out of the hospital to call family and update them.  Landon's doctor said if his echo cardiogram looks good in the morning we can go home tomorrow.  We're all kind of nervous.  It seems so soon.  We thought we'd be here to the beginning of next week.  The nurse from the research department came to talk to me and Ronnie about allowing the hospital to use information from myself, Landon, and Ronnie.  They're hoping to learn what things cause congenital heart defects.  They're going to take DNA samples from all of us and Ronnie and I have 32 page questionnaires to fill out.  We agreed to do it hoping our information will someday help so another family won't have to go through what we are.  They are starting to wean Landon of the oxygen now too.  I fed Landon and he ate almost 2 bottles.  His eyes are bigger than his belly though because he got sick all over again.  The nurse brought him in some Tylenol and he was able to go to sleep. Ronnie and Paulette went back to the RMH house to do laundry.  They got back about 7:45pm  Ronnie brought Landon a sucker.  Landon was so excited and was laughing so hard it hurt and he started to cry.  The nurse brought him more Tylenol.  Ronnie and I went and got something to eat.  Landon was really crabby and fussy tonight.  He's really overtired.  He finally fell asleep at 10:15pm.  I asked the nurse not to wake him for vitals since it was so hard getting him to sleep.  Ronnie and Paulette left.  Bedtime for me too.

Friday (4.28.06  Landon is 4 months today)  Sara, Landon's nurse, woke me up at 3:15am.  She did Landon's vitals and I fed him one last bottle.  He had that sedated echo cardiogram this morning and he couldn't eat after 4am.   He did go right back to sleep until 7:15 when they had to draw blood labs.  His nurse gave him some Ibuprofen.  He was crying and fussing like he was in pain.  He was back asleep by 7:30am.  I took a shower and got dressed.  At 8 his nurse came in to hook Landon up to the portable monitors and gave him his sleepy meds.  He was sound asleep in 10 minutes. 

I left Ronnie and Paulette a note since they weren't here yet so they new we had gone down to the Herma Heart Center for Landon's echo.  They got there about 20 minutes after his ultrasound started.  After that he had to get a chest xray.  They put a sand bag over each arm and one over his hips and taped his head down.  The radiology tech said most babies cry when they do that but Landon didn't make a sound.  He's such a good boy and I'm soo proud of him!  He just looked around and watching the tech.  We came back up to the room and Landon had a bottle.  He fell asleep but woke up a little while later for another 1/2 a bottle.  Paulette and I went to get some lunch.  We left Ronnie by himself with Landon for the first time since surgery and he was really freaked out and nervous.  We told the nurse to keep an eye on them.  After lunch we went to research center to have our blood drawn.  She showed us a beautiful mural.  We wanted a picture but it can only be seen from patient rooms.  She said that a family hired and artist to paint it there because their child had been in the room for a long time and only had a block wall outside to look at.  When we got back up to the room the physician assistant came to tell us the doctor's rounds were a little behind but we would be the first because we have the farthest to drive back home.  When he got there he said we were free to go home.  Ronnie and Paulette went over to the RMH to pack up and clean the room.  I got Landon dressed in his sleeper I bought him.  I signed all Landon's release forms and got all the discharge instructions for medications, bathes, activity he's allowed to do, watching for infection and when he needs his follow ups with Dr Finta and his pediatrician.  Ronnie and Paulette came back and we loaded up all our stuff and left.  We stopped in Waukesha to drop off all the clothes everyone borrowed me.  We're leaving Waukesha now and I can't wait to get home!

 

Pinterest CHD awareness board - http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/

Adventures on the Page Farm

I sold me sheep at the end of August.  We were unable to catch the ram.  He's still eluding us.  So today the steers and the ram were up near the calf barn (which is an old 1 car garage).  I decided I would dump some grain on the ground in the barn and lure the ram in and close off the door behind him.  After a few failed attempts I finally trapped him and one of the steers inside.  I figured I just feed them both in there til Ryan got home.  I ran in the house to grab the cordless screwdriver and then climbed over the pallet I put in front of the door so I could screw it up there so the couldn't knock it over and get out.  The steer panicked. He decided the window Sawyer broke the glass out of a few weeks ago would make as good an exit route as the two doors he could have easily pushed his way through.  Mostly I was scared he'd get stuck and pull the garage down on top of me.  He made it out the window...taking the window sill with him around his neck and front legs.  I have no idea how we would have gotten that window sill off of him if he hadn't have figured out how to step backwards out of it while it was hanging down as he ate.  Interesting afternoon around here :)