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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, January 31, 2008

My Kiddie Kandids- My Pictures

My Kiddie Kandids- My Pictures
Had an offer for a little photo session.. It was Free-ninty-nine, couldn't pass it by...Just click on the words above and it will take you to our photos..

sore legs

 

 

 

 

We've been busy the past couple of days..understandabley so...We have had MD appointments everyday. This is the first day home... Alex got his 6 month immunizations on Monday and he just doesn't do well with those...Fever, vomicking and such... Anyway with a couple of Ped appointments and a blood draw yesterday to check his lovenox levels we are home and today seems like a better day... I thought I would post a couple of pictures of Alex happy to be home... His cute little teeth...the pharmicy we are running out of the house (no pain releif, happily he is just on tylenol) and his poor little legs... from all the injections...
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Saturday, January 26, 2008

Last couple days

 

 

 

Here are a few pictures of the last couple days at the hospital... Bonnie holding Alex and Dr. Kouretas... The darling hat that Julianna brought us, and A wagon ride in an outfit Jess the tech put him in and did his hair... Cute huh!!!
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too busy!!!

Yesterday was a busy day. We came home.. The hardest part is all the organizing that goes into going home. As far as the hospital went, Alex needed an echo, to remove his ng tube and to have is picc line removed, this all done before we could leave... Then for home I needed to make follow up cardiology appointments, home health has to be organized three different ways: oxygen, Lovenox injections from the pharmacy, and the nurse who visits to weigh, and assess Alex.. Then there is the pediatrician and the developmental specialist.. I needed to coordinate Ry coming home.. Thanks mom for bringing her and lunch, I am sure we just would have skipped that..We love being here and don't mind the work...We are all trying to adjust to one another again... Ry has had such one on one fun with grandparents and wants a lot of attention from mommy and daddy....Alex has been pretty vocal about not feeling good and to his change. He is used to having nurses come in for vitals and wake him or poke him..We are working on understanding him again and doing things without the help of the nurses... When we were at the hospital I could just leave and take a break... Now I have to wait for help (or hold it)....We are confident we will all adjust to home life soon. Alex didn't have to come home on as many meds as before (only about 5 this time), he is still on Oxygen because of the pulmonary hypertension...They will be watching him closely to make sure he is gaining weight.. He lost weight in the hospital and we were going to come home with a feeding tube for continuous night feeds but, then it was decided that he might eat better when he is at home... so we got to take it out. If he doesn't gain weight this weekend then our pediatrician can make the call. He also hasn't had fevers in a couple of days and maybe they really were coming from his ear infection, so we were able to get rid of his picc too. His Echo looked a lot better and now that little load of laundry looks more like, just a shirt in there.. "Shrinkage" in this case is good.HEHEHE....
Thanks for all the prayers to get us here..Brynn

Thursday, January 24, 2008

01-24-08

Today has been much better. He actually had a relatively great day yesterday too... Most of the cultures are coming back negative which means that the infections WAS in his ears... and he is getting better with out antibiotics for those. I had to place a ng tube last night. It made him gag and throw up, but he was loosing weight and they needed to get his calories back up...So they fed him via the ng continuous feeds last night and today he can have what ever PO....He is weened off most of his meds and doing pretty darn good... Today we hang out and see if anything grows on those cultures, some take longer to present....That's about it....

Tuesday, January 22, 2008

A bug

Well it's been a rough day so far... Alex has been really sad today and whines and feels horrible. He ended up throwing up all over me and running a temp. So they drew cultures and gasses to see what kind of bug we have... It looks like we will be keeping the picc, and will know what type of antibiotics to give when we know what we have... I went with them yesterday to see the echo and the clot. The clot is getting a little smaller. It was interesting to see because it looked like a load of laundry in a dryer tumbling around and around inside the left ventricle...I was able to meet Michelle and Tom today.. It was nice to talk to them and have a nice break from the stresses... Thanks for stopping by...They are expecting a little one with HLHS... They are both so much stronger than I ever was... So way to go you guys....Well if we hear anything else we will let you know... As for right now we don't have a go home day anymore...We will just go there when we SHOULD.....

01-22-08

This morning I woke to the Dr.s all coming in Alex's room for rounds....And hearing the news that they would like to dc his Tylenol, thinking it is masking the fevers and other things associated with the infections.... So he won't be going home today either...As I snuggled him I noticed a little bit of yucky coming out of his ears... Sure enough he has infections..So, this makes things really tricky. They know that the infection in his ears can give him the fevers and they also are concerned that the infection is in the clot in his heart... So they don't want to give him antibiotics for the ears so they can make sure that the infection isn't in the clot too....Then when they get the all clear they will give him something for his ears....Ry is holding her own and the grandparents have been amazing...We are good too, a little understandably disappointed, but I would rather be here and get him better before we go home than make a trip back....Thank you for everything...

Joni and Fam, Thank you for your card and for the dinner card... It means a whole lot to us.... As do the prayers..

Brynn

Monday, January 21, 2008

9 months

Today Alex is 9 months..Such a big boy. He also popped through the tip of another tooth...That's four on the bottom, zippo on top... He won't be going home today as planned...Not because of the snow, although that is enough to keep me here one more day. It sure is needed and loved, but it is hard to drive in and I white-knuckled it all the way to the hospital. I even got to bring the truck which is four wheel drive. The real reason he is staying is because, this is the last day of his vanco(antibiotic) and then they will draw labs to see if there is anymore infection and if not take out his picc line... so we are going to hang out today.... eat Bon-Bons, take in a Primary Children's MC flick and rest until tomorrow...okay maybe not Bon-bons but I think I am due for some chocolate covered Cinnamon bears...

Sunday, January 20, 2008

You want me to do what?????

Yesterday Jeff and I had a huge day...We had a presentation to give for our friends who are out of town.... (scary) and then we went to my folks house to install the drawer and door fronts in their newly remodeled bathroom.. It looks really great... Then we went back to the hospital to see Alex, Ry and Grandma Homer... Ry got her favorite thing..A slushy....Then (da..da....da.....) I had to learn and give my first ever injection... I am a jabber and I practiced at least 10 times...Jeff looked like a champ making the needle slide into the little football we practiced on. I did it though, I think it won't be so bad this next go around... They said I could practice on myself a couple of times to see what it feels like.. I might try that a little later... That way I will know best, how to give it to him...This morning Jeff gave his first injection... It is pretty sad to have your little one look at you like, WHY are you doing this to me.... But we know it will only make him better....We also went to church... We loved it.... Thanks again for all that you do....Brynn

Friday, January 18, 2008

Pop!

guess what finally pushed through last night.. The tip of a beautiful new tooth. Alex will be a little off balance since it is on the bottom right side...So now he has (almost) three teeth. He had a good night and morning and nothing has changed all that much in his plan. So I think today will be a good day.

Thursday, January 17, 2008

Another Low

Well the echo showed some things that are a little unexpected. Like the pulmonary artery that was just reconstructed is still quite small.. This will possibly need to have a stent placed to balloon it open. Not this stay but in the future. The function of the right ventricle is better and looking okay.. The aortic arch looks good and the tricuspid valve looks good... The thing that is the craziest is a new find... the tiny left ventricle has a rather large blood clot... Alex has been treated with Vanco for his infection a while back and he will stay on his meds until finished... He will also stat luvenox (sp?) injections for the clot.. This will hopefully prevent a stroke or breaking up of the clot to travel to other parts of the body. He needs to stay in the hospital until levels of this treatment are correct and then I will be giving his injections at home. The reason I brought up the infection is because there is a chance that the clot may have the infection inside it... They want to get done with his round of antibiotics, see if the fevers come back and then if so, treat for an extended amount of time to rid his body of the infection if present in the clot... We are hoping it doesn't move or break up in the mean time... This just presented itself today because it was NOT on his Echo on Monday. Anyway...I get frustrated that we have another bump, but that is our kid... nothing is ever straight forward... I should have known this was all too easy....

Echo

Alex is down having his Echo right now...Nothing to report just yet!!!

Tuesday, January 15, 2008

pictures of the Bubba

 
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Starting from top left:
1-In the red therapy chair.. in his "closer to the door" bed space.
2-Day 12- I have been taking pictures everyday as a healing thing for me..To see his improvements
3-Having a breathing treatment
4-Ry sitting in the crib too!!
5-Happier yesterday
6-Wagon ride today, blowing kisses at Carter M.
7-HOSTIBLE (how Ry says it) jammies
8-Sleeeeeeep
9-Daddy watches over me.

Shoot'in for Friday

Last night as Jeff and I were driving home, Jeff got a call that there was a sicker kid who needed Alex's bed space and they were moving him from the PICU to the third floor..Yay!!! he had an okay night but has been a little cranky pants today... I wonder if he is teething and just doesn't feel well all around... Other than that..Ry and Grandma Clawson came up to see him today and play in the playroom. They were a little nervous about the snow storm that breezed through... We were praying it didn't stick to the ground until they got home... Tomorrow they want to do a sedated Echo to make sure things with his pulmonary artery looks good... I think that is all... No news is good news I guess....

Monday, January 14, 2008

The talk on the street!!!!

The talk on the street is that Alex is doing well enough to be moved to the 3rd floor. I am not sure when this will happen.. It could be as soon as tomorrow. So I guess we will just hang out and see. He won't sleep with me in the room. He never does at home so that is no surprise, I just keep leaving to do "other" things....Once asleep I can sneak in... Anyway we don't have much to report other than I was able to hold him for his breathing treatment today.. It was interesting to see how that is done..... He has all lines out now except his pic and he is down to 1/2 liter per minute of oxygen... I will post more when we move....

Sunday, January 13, 2008

evening update...

We had a blast driving with and spending a little time with Ry today... She has been so good through this all. We asked her what she learned in primary and she said... I learned about Heavenly Father, Jesus Christ, and that other boy...We asked her if she was talking about The Holy Ghost and she said "nooooo Joseph Snuff" (Smith)..Smart little kid... We did have a better day today...A lot more like our little Alex... Issac's surgery was on Friday and things went well..To clarify, there are two Issac's, one that is five and doing well at home and the other is a new little one that we have just recently met... We are so grateful for all our friendships.....Well tomorrow is a new day and we will see what that all brings....

Sunday

Yesterday was kind of a harder day for Alex..He was placed on a high flow cannula and was really cranky and over stimulated...We seem to be having a better day today. I think part of it is his new location closer to the door. There is so much going on that he wants to watch it all. So today they will continue to ween off his drips and try and ween down his O2's and we will just be resting...

Friday, January 11, 2008

The move

I know that you will think I am totally crazy as I explain this but it has happened before (twice) Alex is having a great day today and loves playing with toys and reading books.. They have these funny red chairs that sit them all the way up and he likes to watch all the hustle and bustle of the PICU.... He got out his art-line today.. He also kicked out an IV, a new one was placed, a little later it went bad and the versed burned his skin... And the bigger news...He moved to a bed space out of heart land and closer to the doors....He doesn't like it if you take him right up stairs, he likes to acclimate to the new space before he goes to a higher elevation.....It's weird I know, but he wouldn't stay up there if they took him right up...So I think we are getting closer to getting well... I still haven't asked too many questions...(don't wanna jinx us) anyway our little heart friends are having a rough world... We know we ask this a lot of everyone, but please keep them in your prayers at this time... Their names are Issac and Rhett... Good luck boys... you need the good vibes for a little while....Brynn

Thursday, January 10, 2008

Our little two-timer

I know what your thinking...But what I mean by the title is....It takes Alex two times to do most things.... Like have his first surgery, be extubated, move to the third floor, have c-diff, pass a swallow study, have the cath to balloon open his arch... And the list goes on and on and on.....So today was a big day because it was the SECOND time he was extubated this stay!!!!!! I was able to hold him and love on him...He seems to be doing well and I am thankful for days like today....Jeff can't wait to be done with work so he can hold him too!!! We watched our little friend, Kaidence get ready to go (h...)..We wish them the best!!!!!
-Brynn

Wednesday, January 9, 2008

01-09-08

We don't have much to report... We are waiting for the best time to extubate... I am in no rush and so when they ask me I say; when ever he is ready... Dr. Kouretas has ants in his pants about getting that tube out, I am sure he will keep them thinking about it.... They got his blood cultures back, it does look like he has an infection, but they have been treating him with antibiotics already so it should be taken care of....Today is Averee, my little sister's birthday!!! happy day to you... It is also one year since we had our first echo with Dr.Su and found out how special Alex's heart is....My mom's birthday was the day after surgery and we wanted to wish her a happy day too!!! (I don't think she really celebrates birthday's anymore...She celebrates the 'Anniversary' of her 29th birthday, which is totally different...) That's about it...

Tuesday, January 8, 2008

01-08-08

This morning has been relatively quiet. Alex had an Okay night. He spiked a fever that they are sending cultures to see if there are any infections, he also went on a series of antibiotics J.I.C.. He could be teething though and I think he might try and push those two top teeth in while intubated. They finally resolved trying to figure out if he needed a MRI and they will just do a CT right before we leave. The MRI is tricky because the patient has to stay intubated and also be pretty sedated because they want them to hold perfectly still, overall the CT is a better choice. So he is going to start spontaneous testing again and they will try and extubate a little later. He is more awake today and when he opens his eyes and sees me there he scrunches his little forehead and does the "please pick me up" look... I have huge anxiety and want to comfort him but I won't be able to hold him until he is extubated.... My guess it that he won't want me to put him down when I finally get to hold him...I have been taking pictures each day to record his progress..(one of my coping strategies) and I am amazed already at how he is doing and looking so much better...

Monday, January 7, 2008

He can't be extubated until they do an MRI to check the function of his newly reconstructed pulmonary artery and the tricuspid that still has a little leakage, they can't do a MRI without taking out his pacer wires (because it is a magnetic current and pacer wires are metal) and they also need to take out his other lines that have metal.. But, they can't take those out until they get a deep line so he can still have meds that go directly to his heart and they can't put in a 'deep' without a peripheral and he is a hard poke...... So they had to wait for the top dog on the IV team and they were able to get his IV first poke and now I am waiting while they are putting in the deep....WHEW!!!! then we will work backwards until we have successfully gotten him extubated.... Ry just got the hand-off to the Clawson's and had a blast with the Homers..She had a great time at dance and is glad to be back doing some normal things..She gets to go to a Irish Dancing performance tonight and then it is Auntie Aves Birthday on the 9Th. They are going roller skating.... She can hardly wait....Jeff started back to work today.. I can't imagine how hard it must be to think about work and stay focused with everything else going on...He is and amazing husband and father. We went to the Primaries branch yesterday...There is and amazing spirit in that meeting...I look forward to it while we are here..Jeff asked the Church reps if they would mention his name for the branch presidency...HAHAHA HEHEH... Can you imagine 30 min sacrament each Sunday with no interviews or tithing settlement????.... Signing off for now...Brynn

Sunday, January 6, 2008

Day of rest..

For Alex this was truly a day of rest... He did get his drainage tubes out... They are talking about doing his spontaneous trials tonight... And maybe extubating again tomorrow..... I think that is all the news, he has had some wonderful visitors and we are so thankful to all the friends and family who have supported us yet again...

couple of photo's

 

 

 
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Saturday, January 5, 2008

Dips in the plan

Heart kids are tricky and they follow their very own agendas. Last night at about 10:15 Alex went on c-pap and was just not being a good breather. Then at around 1:oo am he was vented again. They were able to bag and suction out some major plugs which is good but he will need to rest today... They FINALLY got him to pee pee, so when i walked in this morning the first thing I noticed is how much he starting to look more like Alex and less like the Michelin Man. I brought up a couple more home comforts for him and I am washing the few things he already had so that they will stay nice and infection free.....We thought Ry would be able to come in and see him yesterday... She will soon enough. I am sure Alex felt her spirit in the PICU waiting room... She was happy to play in the playroom. He went back up on some of his meds and they will try the ween all over again...I understand these ups and downs and feel confident he will be well when it is time...So for today we hang out and rest........

Friday, January 4, 2008

I can't help it!!!

I can't help but change the template of our blog....Sorry... It must be a girl thing... I did want to say that as we have been here I have finished two great books if anyone is interested in a good read.... Sink reflections, by the Fly Lady ( I actually have read it before and now own it) and Hold on, by Micheal McClain... I have always wondered what inspires an song writer. Thanks to the Quinney's..It was wonderful.. I just started a new one. I am having a harder time getting into it... We will see....

cough and sputter

Alex was successfully extubated yesterday.. He is really junky sounding though. He had a pretty good night, but his head aches are tricky and we sit in a dark room and wh isper to make it a little nicer for him. He has had a really slow day today. He won't go pee pee so they had to put him on a dose of Diurell because they think he is so used to the Lasix that it isn't doing it for him. His blood pressure has been a little high today but he did get his cath out today and also his line that was in his neck. I think that it made him a little more comfortable to have them out. He looks a little blue on his upper half and I am a constant worry that Chylo will return... I have asked so many people and they are not totally sure that it won't. He started eating today so I will be watching him like a hawk. He is expecting to see his big sister today.. if only for two minutes. They are making special allowances to have her in for a few minutes.... I understand the RSV risks too!!! so this will just be a quicky.. So we are learning more and more of what his surgery was like.. these are the things that happened.... he had the bidirectional Glenn, he had right and left pulmonary artery reconstruction using a little patch to make it bigger, they took away the little Sano conduit, he had his tricuspid repaired (which still leaks a little bit) But will hopefully get better over time. and because he was having a hard time he had a cutdown and some lines placed in his neck.... I am amazed that they can go through so much, so days like today is expected..

Thursday, January 3, 2008

update

just a little update....Alex was doing his trials on the vent and did well although they came into listen and could not hear a leak..... A leak (for those who don't know the hospital lingo) is a space in his airway. With a tube down his throat there is a tendency to have your throat swell around the tube.. so having a little space around the tube gives them a better chance of coming off the vent. So they gave him a little bit of steroids to help and we will try again soon. He is looking good on his sats... He was sat-ing in the high 60's low 70's at home and now he looks more like the mid 80's.... We are right now turning the versed and the fentinal off...So we might be in for a little bit of a bumpy road....we'll see....His blood pressure looks good and his temp is good.... so we just will hang out for a little while... it might be a long-ish night....

Pink its my favorite color...

Has anyone heard that song?????? Well our little man has nice pink toes and fingers... His little face is a little blue, but it may be due to the strange shade of green that the walls are painted. We have slowly been weening his vent in hopes to extubate. The funny thing is that he is so happy to ride it and not work at his own breathing. They have decided that he is resting so well that they don't want to bug him. He continues to pee pee... a huge thing for these kids coming out of surgery.. who knew you would be so happy about things like "liquid gold". He is moving some and last night he opened his eyes to make sure daddy and mommy were there with him. Last night we stayed in the sleep room. They are these small rooms with a twin bed, a chair, and a light switch...And some darling art hanging on the walls!!!!!! Have you ever seen how big I am and how tall Jeff is? we don't even try to fit in the bed together. But, we do get tricky and last time we stayed in the room together Jeff slept on the floor in a sleeping bag... this time we pulled the matress off the bed and put it on the floor; put blankets and the sleeping bag on the box springs and we slept like a charm..... I took a few photo's of our little man post surgery and our little sleeping experiance and will post them when we get home for a few minutes...

Recovery

Well it is a new day, and hopefully Alex will start getting better. After a long night I am sure Alex is in for a hard day. He was having a hard time as the sedation was wearing off and kept thrashing, and moving, they had to parilize him once, which gave him about an hour and half of good rest. We really hope that getting him off the ventilator will help him calm down, who wants something down their throat anyway??? We will keep you posted as the day goes on. They did tell us this morning that except for the coming out of sedation things were great last night.

Wednesday, January 2, 2008

4

Alex did great!!!!! He is now in his room and on the road to recovery. He is swollen like before and is such a hard stick for IV's that they had to get a little creative with his lines. They ended up not needing to repair the aortic arch. It's gradient pressure is 5 and the surgeon felt like this was acceptable. Dr. Kouretas had to really take his time on the pulmonary artery it was very narrow and he spent a while repairing this. Then he also fixed the tricuspid valve.. it all looks better. Then they did the Glenn on top of those other things. His chest had some very intense scarring and they attatched him to the cannuals to the heart and lung by pass before even opening him up. The scar tissue was very packed, most likely due to the infection he contracted last time. It might also have been the delayed closure that occured from the revision of his Sano conduate. He is on a few drugs to keep him "happy" they have already closed his chest and have talked about extubating. I don't mind going slow with these things.. It is all so different than before...(not as bad as I thought Michelle) they were thinking tonight but want to maybe let him rest after all that and do it tomorrow. Jeff and I are pleased with how things are looking and want to thank everyone for all the prayers and fasting, we feel the love from everyone....

3

We just got word that Alex is off the heart and lung bypass- He is doing well and we won't know more untill we talk with the surgeons >>>> Tumbs up so far...

2

Just got updated that things are going ok, just slow. I cant imagine how it must to be working on such a small heart. We are so thankful to those taking such great care of our little boy today. We still have a few hours.

1

just saw Dr. Kouretas, they are just starting

Getting started

We made it in just fine this morning. I was kinda holding my breath, but, we were able to go right in. He is looking great and was pretty happy this morning. He was a little hungrey but nothing too major...We haven't heard anything yet. We are so lucky and surprised to see the Quinney's here. They brought Bryson down with a major cold and they are testing for RSV...

Tuesday, January 1, 2008

Preo-op, New year, and count down till surgery

Yesterday Alex went to pre-op, it was uneventful (so nice!!!!) I was happy to have most of the hospital quiet because of the pending holiday. We were able to get in and out in about two hours... That is record time for us... Everything looks great for tomorrow. They only did a chest x-ray and drew some blood for labs....We rang in the New Years in our beds sound asleep until we heard the infamous cannon that our neighbors shoot off... We love to hear it and I was glad it was loud enough to wake me for two seconds, realize what it was, smile, and go back to sleep. The kids didn't even stir... Today we take Ry to Orem and say 'see you' soon. I guess the PICU is in lock down for the winter months because of the RSV risks... Then tomorrow we check in at 6:30 am and surgery is scheduled for 8 am... We will try and keep you updated as things go...