Pages

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, May 31, 2007

Home--ER----PICU

Where do I start... Alex is back at the hospital. We successfully made it 4 days at home. Tuesday night Alex started to become inconsolable and would only take about twenty minute naps that left Jeff and I very exhausted. The bishop's wife Heather called and said since she'd been around all the machines with one of the triplets she felt comfortable enough to come and hold him while we slept for a couple of hours. This turned out to be soooo nice because yesterday he continued to go down hill. I needed the rest to even think clearly enough to see something was wrong. The home health nurse showed up that morning and started to ask if the way he looked was normal. Alex had also stooled at least eight diapers between 8 am and 11 am. We were also scheduled to take him to see his pediatrician for the first time. The nurse suggested that I call her when I felt uneasy about things. Well I ended up calling the NP at Primaries and told her his symptoms. She told me to bring him into the emergency room and she would call and tell them we were on our way. I called Jeff and we went to pick him up and drop Ry off with grandparents. We flew to the hospital making it fifteen minutes faster than normal. Jeff dropped me off so he could go park and I went right in. The admit took one look at Alex and rushed us back to begin treating him. That was the scariest part. How startled everyone looked when they saw him. Then they decided to move him to the PICU and quickly intubate him. He has had the gamete of tests and cultures run on him but everything comes back fine and today he has turned a 180. He is clearly looking better and his sats are normal. He is perfect on his gases and the doctors are puzzled as what would make him so sick yesterday. Needless to say he is resting well and they will try to take him off the vent in a little bit. They think it is withdrawal and let me tell you that is scary stuff. If you have ever gone off even sugar or soda and gone through withdrawal it isn't fun, but to go off a drug and not be able to tell mommy what is going on it is a nightmare. They were very surprised we didn't bring him in an ambulance because there just wasn't much fight left in him. So needless to say... If you thought I was paranoid before, wait until you see me now. Thank you for your continued prayers......Brynn

Monday, May 28, 2007

More buddies!




Baby-K , Ryleigh and Jackson have been bathing together since they were tiny. We will just have to end it pretty soon. With Alex and the England two on the way from Ethiopia there is just no way to get three more behinds in one tubby. Ryleigh and Ellie are playing in the water in the other photo's. Ry did a very thorough job putting on the sunscreen. Again thanks for all the help.

.... We had a great day today. Ryleigh, daddy, grandma, papa Clawson and the girls went to see 'Shreck The Third'. Then they came over and had a picnic and put up Ry's new trampoline. Grandma and Papa Homer came over for the Jazz game and we all have just loved on the baby and Ry all day... We are starting to get the hang of administering Alex's drugs and making sure everything looks good. He is on about 7 different drugs and has his feeds given through a pump that goes into a tube that goes down into his intestines. He has a huge cord for his O2 that we have been trying to teach Ry not to trip on and just making it all work the best we can.

Sunday, May 27, 2007

Home

Alex knew he was home and streched right out for a rest.

Just being at home pictures! Dad loves his kids.....

Ry and her buddies




These are the things Ry did while Alex was getting better. Thanks again for all of the help. We are so thankful for everyone who Ry loved hanging out with.

Saturday, May 26, 2007

Going Home

So we are going home today... I am so excited. We are just waiting for discharge orders. I wanted to thank you all for the prayers and thoughts.. Most of you know how scary it is to be taking him home... I just wanted to ask a tiny favor, if you are sick or otherwise afflicted, can you not come over and if you chance to stop by... Can you not bring any little ones over.... AND...... Maybe we should just have a little time to get settled... I wanted to say it nicely that I am a huge GERM-A-Phobe now and I will make you wash and wash...So don't be offended.. I just got the talking to by the doctors....We'll write more later

Wednesday, May 23, 2007

Higher up

So we made it to the third floor. He is doing so good. The ENT team dtermined that he has a little laryngelmilasia, he will be fine. They just give him some meds for reflux. Just wanted to tell you he's good.

Monday, May 21, 2007

ENT?

Alex spent most of the day sleeping in my arms. I loved it. He was still in the PICU today without much change. They also wanted to rule out any upper respiratory issues, so they ordered in the ear, nose, and throat team to check him out. Everything seems really good. We don't really have a plan so I guess there isn't much to report. I visited our neighbors today. They have twins in the NICU at the U. They were born at 27 weeks gestation. It brought back memories of my Grace. (My niece, also born at 27 weeks) with all that these kids go through I am amazed at how sweet and healthy they become. Grace is turning 4 in about two weeks and she is a miracle. She stayed in the hospital for 3 months...... I would have gone crazy. She has amazing parents. I keep promising pictures but I don't have either camera to upload any.. I'll just keep you in suspense.

Just kidding!

Well as we have said before..... Alex will do as he will do. I spoke too soon. On Friday he tried to get that pic-line in, only to be unsuccessful. He also failed his swallow study. This kept him in the PICU on Friday so they thought maybe they would move him Saturday. Well he went down that morning for another stab at the pic-line and failed again. Ry and I went to ride Thomas the Train in Heber during this time. At about twelve they took him to the third floor where he lasted one hour until he went into respiratory distress and was taken back to the PICU and put on cpap. I was very disappointed to say the least. It is hard watching him struggle. He had an uneventful night. This morning we went to church at Primaries and after went to see him only to find he had come off cpap and was resting well. He had a very quiet day today and seems to be back to himself. The doctors aren't sure why things like that happen. These kids have nothing in reserve, so just the fact that he had been moved all around and poked so many times over stimulated and wore him out. I feel like he is so fragile. It is scary to think that even moving him around like that will make him sick. He will make another try at a swallow study in a couple of days and we will see how things progress. We have been practicing and he is taking his Binky pretty good now. Again I will try and post pictures soon....

Friday, May 18, 2007

Moving up

Well Alex is down getting yet another pic-line and then hopefully he will be moved to the third floor. So for those of you who have been here, you know that means he is doing well. He is on full feed of the portegen and he is also on antibiotics...other than that they seem to slowly be taking things away. It is great that he is having these great days. I got to hold him again yesterday and today and it is so wonderful. We are just happy. I will post pictures soon of everything... we just haven't had a minute.

Wednesday, May 16, 2007

Nice Day

The news on the Home(r) front is... Alex is having a nice quiet day. He got his pacer wires out today. He also got the results of the bacteria he got. It is called bacillias cereous, when you say it is sounds like bus-silly-us-serious. It is a skin contaminant. It also comes from re-heating ham fried rice. I thought that was interesting and I want to google it as soon as I am done here. He is on the antibiotic to take care of that. He also is off his milrinone, and will go down SLOWLY on his pain meds. They dropped his o2 down to a liter, he is tolerating all this. Ry is had a blast with Clawson's. She made the most darling build a bear for Alex. I love that she is so good with him. Today after dinner she stripped down to her nothings and ran around outside with a naked Jackson too; for a while loving it. Jeff is up at the hospital tonight with his boy and he and Alex cheered really loud when the Jazz won the game... I am just laughing at them all and happy to be the mommy and the wife...

Tuesday, May 15, 2007

A new day!

With a good night sleep under him, Alex is having a better day. He is supposed to just take it easy today. He will stay on his milranone a drug that helps his heart not work so hard. He will also stay on his anibiotics. They are going to grow it out over the next couple of days to find out which antibiotics will work the fastest. He is looking so much better. Even his incision looks cleaner today. I won't be able to hold him until he has a little more rest so that he doesn't get stressed with all the new things. Anyway we are all feeling better today.

Monday, May 14, 2007

Follow up

I just wanted to do a follow up from earlier. Well his blood culture came back positive for a grand rod infection. So they are treating Alex with an antibiotic. They also removed his pic-line to make sure that wasn't the sight of the infection. They also put in a new I.V. in his head because nothing else was working. They put his art-line back in as well. He WAS actually fighting withdrawal which is why he had the shakes and purple toes and why his sats weren't raising. They just upped his dose and will take him off those drugs a little slower. K- We will know more tomorrow

Held him till my arms fell asleep!

I am so grateful for yesterday. As you are beginning to understand, Alex never follows the norm. He is once again doing something totally different than what should happen. If it is out there Alex will try it. He has been very dusky today. He looks like he might have purple socks on his feet. They have been running tests all day to determine why his sats won't raise and his heart rate is so high. He also had an echo that looked really good. His blood gases are good, but they can't seem to get his sats stable. So they started with some cultures to see if he has an infection. He also went on an antibiotic so that it can start helping if there is and infection. Then they also talked about putting him back on the vent. I obviously don't want this, but if it helps him I know it is best. We are worried he might be having some withdrawal from the drugs he's been on so they went back up a little on his doses to help with that. I hope withdrawal, is what this all is, because that would explain everything and it would be an easy fix.....We will see. Yesterday I held him until my arm fell asleep. Now I wish I would have stayed and held him all night. It was the best mothers day present ever to hold my two babies.

Sunday, May 13, 2007

Happy Mothers Day!!!

For The first time since April 25th Brynn finally got to hold her little one again! What an exciting day for our family, we have waited and waited for a chance to hold him in our arms again, and were very grateful that it happened this day. We came to the hospital at 8:00 this morning, and they decided to pull out the chest tubes, and also to cut out the stitches in his chest. He is making so much progress now and we are so hopeful! We also found out last night that he had moved to a different room in the PICU so he could be paired with another patient, and we also learned that they had removed his ART line (The line they would draw blood from to check his blood gases). He just looks so amazing to us, we feel so blessed to have such beautiful kids.
As usual dad slacked on this occasion to even get mom as much as a card, but I hope being able to hold Alex again made up for me being a slacker dad. Even though I didn't do the card thing I hope Brynn knows that I love her and am so thankful to have her as the mother of my children, and my best friend. Thanks Brynn for being such a great mom, Ryleigh, Alex, and Me all love you and are happy to be able to call you MOM. Love Jeff, Ryleigh, & Alex!!!!!!!!!!!!!!!!!!!!!

Saturday, May 12, 2007

He's the (little) Man

Alex is off the vent he finally got strong enough. I am so excited. He is really doing much better and I think this is a step in the right direction. The portagen seems to be doing the trick because his fluids are clear instead of creamy yellow. He still has to be on it for a long time but, at least we know there is not any more building up. I knew the Mathis's would understand the chyle thing. Thanks Andrea. He actually drained out 207 ml total. I bet he feels better with that out of his system. He is breathing well, and his sats look better than when he was on the vent. Ry is doing really well. She played at the Mahony's yesterday. She loves it over there and bawled when I tried to pick her up the first time. She seems to be over the whole raisin deal, but this is her second offense, the first time she stuck a peanut up there. I guess she takes after her mother.

Thursday, May 10, 2007

Chylothorax

Well Alex has Chylothorax(I think Andrew had this too?????) So he got chest tubes to drain the chyle. He is breathing much better since he doesn't have the pressure against his lungs. He will go on portegene for six weeks... so in saying that, I am going to give up on pumping. He then will go on pregestimile. 28 dollars a can. Jennylin and Eric buy theirs off ebay. Good thing we have them for the ins and outs of things. Other than that he is doing good. They still haven't taken him off the vent, that will come when he is ready. I just took care of a mini 911 situation. Ryleigh stuck a raisin clear up her nose. We tried to blow it out.. I tried to use the bulb syringe and suck it out... I even tried to flush it with saline. I resorted to running over to the Englands to have them help me. Jen held her head, Nate held a flashlight so I could tweeze it out.....NO MORE Raisins unsupervised..... Well that's it for today.

Tuesday, May 8, 2007

Daddy's Still Here

Yes, I know once again I bow down to my wife when it comes to keeping up on the blog. It has been very difficult being back at work, and trying to focus on work when my mind and heart are up at PCMC with Alex. I am here with him right now, and he looks to me the best he has been since before surgery. I am so happy just to sit here and feel of his spirit, he is truly amazing and I truly do feel close to heaven being in Alex's presence. Today he had to go down to radiology and get a new pic line placed. They hope to take out some other lines tomorrow and by placing a new pic line that should allow them to remove those lines. We also hope to have him taken off the Ventilator again tomorrow, hopefully this time it will be more permanent, they just did a trial with the ventilator on spontaneous mode for 1 hour, and he seemed to do well we are just waiting for some blood results to see how he handled it.
Besides just being absolutely exhausted from all the emotional ups and downs we are doing very well. Brynn really does a good job at keeping us together and always looking for the positive. We just pray for this little guy and are glad that he has done so well for the most part. Jeff

little to say


Hey everyone, Alex had a really quiet day today. Nothing to report, he slept most of the day. He got a new pic-line put in. Tonight they are going to try spontaneous breathing on the vent. This allows him to do all the work and acts like a back up if needed. He is just taking it easy so they can try taking him of the vent again tomorrow......maybe.... or maybe the next day.
Here's a picture of his little piggies!!!!

Monday, May 7, 2007

Thinking of a special missionary!

Today Alex is 16 days old. I have been thinking about a special little missionary that Alex knew before he came here. I want his family to know that we love them. We want them to know that they have been a huge huge example to us and that there are days that we draw on their strength more than they know. Their little angle is standing by our Alex's side and helping him through his toughest moments..... Thank you for everything Browns. Thank you Max! It has been amazing to feel the angels that help Alex everyday. We know they are with him when we can't be by his side. He is still doing good. He is just taking it easy today and resting.

Things go as they go!

It seems like things will go as they go. As I wrote before, they wanted to try and take Alex off the vent on Fri or Sat. He didn't end up having it done until yesterday. He struggled most of the day to try and remain calm, because they also try and ween him off his major meds. He does this crazy thing where he will clamp down, hold his breath and turn totally blue when he is so so mad. It was hard to try and stand over him and calm him, and not be able to pick him up and love on him. The nurse tried her guts out to keep him off the vent but last night they decided to put him back on. Plus, I was feeling weird about this onset of swelling in his face and neck and the Dr. decided it was also a concern, they wanted to run an ultrasound and put him on heparin to make sure it wasn't blood clots. The ultrasound team was there this morning when I arrived. What a relief to hear the "all clear". They aren't sure what was causing the swelling, but I thought he looked much better today than last night. So, although he is back on the vent, I know he needs a little more time to get stronger. He can do this. They did remove his last drainage tube and his pic-line, these are still small steps. I must have really needed the comments from everyone because they have buoyed me today. Thank you

Friday, May 4, 2007

The Next step

When I got up to the hospital today, what a suprise to find an awake, happy little boy. He is doing well today. He got his NJ tube(feeding tube) and they started him on breast milk today. Just 1 cc and hour for 12 hours to see how his gut will tolerate it. He also had his Folly cath out today, and believe it or not they want to see of he is ready to go off the vent tonight or tomorrow. He is hardly using it right now. They have taken him off most of the "Rocket Fuel" as Dr. Arington calls it, hard meds. He is just making great steps. Ryleigh is at another friends house today and seems to be okay as long as mom or dad comes to get her. She has reverted a little on her potty training but she will be okay it is not the end of the world. Thanks again to everyone who brought over frozen dinners. It has been so nice not worrying about one more thing. We have really been taken care of.

Thursday, May 3, 2007

Until now.

We finally got Alex's chest closed today. The risk of infection kept getting bigger and bigger with each day. So, even though he was still a little swollen, Dr. Kouretas decided to try. The procedure took a little longer than normal because of the extra swelling and his blood pressure dipped some; at this point they will continue to watch him and make any adjustments to his meds as necessary. Overall things are looking okay. Ryleigh had so much fun today. She went to a neighbors for the first time. The Homer's (no known relation) she made us a cake which she put frinkles and Fonge Bob Fuare Pants sugar candies on. She made a darling little visor and a bead necklace. She played and played. Thanks to grandma's and papa's and aunties and Shanna who have watched her. We really really couldn't do all of this without your help. We love you.
P.S. Shanna took pictures of Ry today, so I will download them soon.

Tuesday, May 1, 2007

My turn to brag!

Okay, anyone who knows Jeff (even a little bit); knows he is an amazing daddy, a kind heart and my best friend. I am so lucky he's keeping me around. There have been times when I have leaned on his arm, his testimony and his strength. When we started with infertility and then lost the twins I knew that I could endure anything as long as I had him by my side. This has been true yet again. So lets get it straight who is walking in who's footsteps. Our little man is doing very good today. He sure does have a temper though. It is really sad when he gets upset because he has that big tube down his throat, you don't hear noise, you just see sad little face and mad-mad-mad little feet and hands. I told the nurse he must have a crap attitude..... She looked at me like...um... okay... so then I had to explain that, despite his condition, despite the fact that he has undergone two surgeries and no matter what anyone says.. He doesn't give a crap! He's going to live, he is going to get better, he is strong... that made sense to her. He got the I.V. in his neck out today. He also had a drainage tube removed. They are trying to ween him off some of the drugs, and he is going tinkle really well. The nurses are very obsessive about how much he tinkles, this allows them to judge how much fluid he is getting off. They hope to close his chest tomorrow. This will be a big step to his recovery. His sats have been in the high 70's mid 80's today. He is just plugging along. Ry is doing well also. She had been staying in Orem and having a blast with grandma and papa, aunties, and of course baby Arli. This is all starting to be a little hard on her. Good thing grandma's and papa's can make things better. Our parents have done so much to help us, we couldn't make it with out their help. Jeff and I met some families with heart kids, they are amazing. They have made this all a little easier and I just wanted to cheer for Bryson who got to go home today, and Brinley who we think is darling. Thanks guys. I will let you all know how Alex's chest closure goes. until then.......