Dad and Parker

Well Parker and I have been hanging out all week, I will have to admit i was nervous a little because Jess knew everything that was going on. But i think I have passed with flying colors i would have to say. Parker is doing well we have had some good bonding time it has been awesome to be able to spend that time with him. H is status is stable he is awaiting a new more preeminent IV line called a Broviac line that will be put in some time next week and when that happens he will be able to leave the ICU. So that's the plan at least for today. Jess is enjoying her time away and looking forward to returning at the same time. Jim

Getting A Break

This week I got to come home. It has been 9 weeks since I have stepped into my house, everything looked so different, but it only took 2 minutes to realize that everything was still the same. I miss Parker so much this is the first time that I have been away from him, but I think that the break will be very good. I called Jim yesterday, (morning Mon)to see how things were going, because he'd never been alone with Parker either. I told Jim to put me on speaker phone so that I could talk to Parker and he could hear my voice. As soon as I started talking Parks started to bawl. He cried and cried and cried. After about 2 minutes Jim told me to try again, but that just made him cry even harder. It was breaking my heart. Not good to hear. I was really, really, really nervous to leave but now that I'm home I'm so glad that I acctually came, I almost cancelled more than once. My mom and sister and I had planned to go to Womens Conferance in Utah back in January, before my life got a little more complicated. We didnt know if we (and by we I mean I)were going to go through with going, but I'm so glad that we are able to.

JIMS BIRTHDAY

Jim and the boys came up and so we took a break from the hospital while Parker was having a nap. Jim decided that for his birthday he wanted to go to "lets play". Man did he have a great time. He was right in there playing in the ball pit and wrestling with the boys. They burned some energy off and had a blast. Brock was so excited at first and going wild until he came to a dark slide and then he got scared and came bawling out of that jungle gym as fast as he could find his way back (which took quite some time) too funny. I had to go through it with him and go down a couple of slide behind him before he relized that there was so much fun to be had. Then he was let loose and brave again. We went back to the hospital to check on Parker and played with him for a bit, then we went down to the riverbottom and found some walking trails, cause Kade said that we needed to find a forest and go on an adventure. So that was very fun for them. It is good to have our whole family together again. Happy Birthday Jim I hope you had a good day!!!

An infection

We have had a rough couple of days, right now things seem to be going backward and not forward. Parker has just been so grumpy, he crys a lot and nothing can really settle him. He does like pink swab sponges dipped in water but that can only hold him off for so long. Since Sunday Parks has been having partial seizures againg but they were a bit longer lasting then last time, so they had to go up on some of his seizure medications. It makes him pretty sleepy so that was kinda nice. Then last night Parker had a temperature of 39.8 so that was pretty high and then they did blood cultures and urine cultures and his pick line and blood came back as being infected. So he's on some strong antibiotics to try to wipe it out. So hopefully things clear up and he starts feeling better.

Another Dang Friday April 17, 2010

Hello everyone, I don't know if everyone knows but we have had some issues with Fridays. Eveything bad that has happened has happened with the acception of one or two events. I always dred Fridays, and think what's going to happen this week. This particular Friday started off really good, it was beautiful outside so Jim and I got to take Parks outside for a walk, it was amazing, its was the first time that hes been outside in more than 2 months. When we got back inside he had a nap and then woke up and he was acting weird again. He wouldnt sit and his left leg wasnt moving. We called the docs in and they got a stat CT and the neurologist to come and see him. It came back that there was a little something on the scan but they couldnt tell totally what had happened. But from his symtoms they said that he had another stroke. Then on sat at 6:30 in the morn one of his Doctors called and said that they were going to do a pump change in the PICU because he developed another clot and it came about very quick. It has only been 1 week since the last one so they were pulling their hair out. Parks has very weird blood that they cant figure out. He was on 6 different blood thining drugs, but none were working on him like they should have been. 1 hour after the change he had developed 2 fibrines in the pump and so his doc was furious. They got ready to take him back down to the Picu, to start him on a drug that they have never used on children here. The thrombosis doc(blood clotting doc) had to call someone in New York that has used it to get all the details. But this morn things seem to be going better. He is very cranky and crys a lot but he's ok. Anyway that is the latest undate on our crazy little man that is continueing to keep us guessing. We love you all and hope all your lives are going well. Love Jess and Parker

A Stroke March 31, 2010

Well its almost been two weeks that nothing exciting has happens... We like unexciting days around here. Sooooooo on Wed morning I got to the hosp at about 8:30 and Parks was sleeping and when he woke up I sat him up to feed him breakfast and he was holding his head weird. To the side like it was to heavy for him to hold. I thought it was weird but didn't think too much about it. Then he would put his hand on the bed and try and brace him self, cause it was like he had no balance. I layed him down and went and listened to rounds about him. I came back in the room and set him on my bed and he fell right over. Parks doctor Holger (Berlin heart man) came in and I started bawling and told him that something was wrong with parker that something wasnt right. So he started assesing him and asked the nurse to get a stat CT. Also his fists and arms were really clenched and I couldnt put his splint on his arm and then his right hand started to shake. So it came back that he had a medium size stroke on the left back side of his brain and a bleed on the right. The stroke neurologist said that usually with kids under three their brains are really resiliant. If something happens to the left side the right will learn what the left was supposed to do and visa versa. Right now they are worried and watching his right eye mostly the periferial vision and his right arm and hand movements. They are not as strong right now. He is throwing up a lot so hes not allowed to have anything by mouth he gets it all through a tube. He seems to be recovering ok. He is very sleepy but coming around. And now Holger his doc is going to china and taiwan for 3 weeks today so i'm really nervous. I hope we have no excitment while hes gone.

anyway thats all for now I hope that you all have a good easter.

we love you all and are thinking about you.

Parkers new heart March 14 2010

Its not what you think....

So on Thurs. we were having a great day. He was back on the heart floor and I was reading him some books and he was laughing and smiling at one little dog book.(which is totally out of the ordinary for him to even smile so I was so happy). They started feeding him by a tube 24 hours a day b/c he has been losing lots of weight lately, so they need to get him fat again. At about 1:00pm he was really mad at someone that was doing something, and started to gag then to puke. He puked so much that he soaked 4 blankets with it. His whole head was dripping with sweat so the docs were there watching him. After I went to take his pants off cause they were dirty and I looked at his legs and he had what looked like big purple bruises all over and then they were on his wrists too. There was not enough blood was profusing to his organs and body. I yelled to them "this is not normal" and they came over to him and got an icu doc to come up to see him and he took him down back to the PICU AGAIN. ( we were quite the joke cause we couldn't leave for more than 3 days) they gave him some epinephrine and they watched him all night. Friday morning Dr Ross his heart surgeon called and said that they wanted to take him into surgery first thing that morn. they put in a thing called the Berlin Heart. You can google it if you want. He was worried that the next time he had an episode that he might not come out of it. What it is, an artificial heart, it is a pump that does all the work for his heart in a box. So he can grow and be a semi normal boy, until a real new heart is available. Anyway they were in surgery from 8:30 - 5:30. Today he was awake and fighting to get his breathing tube out. He looked pretty good considering. I got to feed him a bottle and he loved that after starving 2 whole days. Hes such a trooper. Thank you for fasting for him (if you heard that rumor,) on such short notice. I know that, when the whole family pulls together, the faith is much stronger. Thank you from me and Parker. We love you all.
love jes

Parker is one!! March 10, 2010

I am one year old today!! Wow I cant believe that, this year really has gone by so fast. We had to spend it in the hospital, but I was out of the PICU. I'm not going to have a party just yet. I'm going to wait for my big brothers to come and help me celebrate. I got a couple of presents from the hospital; A quilt, stuffed monkey, balloon and a bin of blocks.

A pacemaker March 5, 2010

Parker had to wear this defibrillator

in case his heart stopped!! scary

Happy birthday to me!! and to celebrate it I'm going to spend it at the hospital. So yesterday Parker went back to the PICU because of inconsistant heart rate and he was having 2 to 1 heart block. So they got him ready for surgery and put a pacemaker in. He now has a big square box under his skin by his leftside ribs. He came back intubated and today they pulled his breathing tube out. Everything went pretty good. He came out of it at about 8:00 pm. Mom brought the kids up and Les and Dust came, Chris and Candice and all their kids and Dad and Derek all came up for my birthday, we went out for dinner and then all came back to the

Ronald McDonald House and had a party!! It was a great day after all.

On to Edmonton Febuary 28, 2010

Ok so the newest news. We have had another busy weekend, on Fri Parks got a new pick line in his arm. He had gotten one in on Wed but then decided to pull it out so we had to get another one in. He has to go to the OR to get that done and go under anisthisia, so its kind of an ordeal. So after he came back that evening his heart rate was way high and o2 very low, his heart had a different arithmea and they were pretty worried about it. The intensive care doctor was quite worried about him and so they arranged for him to fly up to Edmonton that night but this time it was on an airplane... lucky guy. So we went up in the morn. and by the time we got there he had a feeding tube in his nose that went to his tummy. They said that he was working very hard at breathing, that his head was just drenched with sweat and his heart rate was too high. They were worried that his heart was working much to hard. Needless to say he was not impressed. So this morn. we plead our case to the doctors so by noon we were able to try to give him a bottle. He took it like a champ and wanted much more, but they said to pace him. Anyway he looks lots better today and so we just have to wait till monday so we can continue the transplant process, but hes doing better. Anyway that is all that i can think of for now.
love you all
love jess

Parker update February 27 2010

Ok so I just thought that I would update everyone as to what has been happening.... ok so he is doing lots better on his new medicine, he very happy and quite cute, he is flirting with all the girls in the icu. 3 people came in to see him because they had heard that he was so cute and they had to check things out for theirselves. He smiles and holds his had out for them to hold then quickly pulls it away so they cant touch him. So that is very cute. They had a conf. about him yesterday and looked at echos of his heart now and 2 months previous and they said he definatly qualifies to get a heart transplant. So they have started the process for that. They have to take a lot of blood from him daily and he has to see tonnes of different specialist before his name can acctually go on the list. They still havent taken his melronone down(new med.) and I suspect that they wont cause the echo today looked like it did on sun, but its not worse so that is good. If he stays on this drug then his chances of getting a heart may go up b/c with out he would deteriorate quicker, the sicker the child the sooner you get a heart. So they had a transplant conf. today and said that he would be able to stay in calgary for most of the pre transplant stuff so that is good a little closer to home. We will have to go to Edmonton maybe sometime next week, so they can look him over and do some tests as well. But likely we will be able to come back to calgary, for the waiting game to start, as long as hes healthy enough. So he does love visitors and like them too. So if anyone is in the neighborhood and would like to drop in we would love to see you. you are always welcome. i think that is all. as for now just test and more tests. thankyou all for your love and support.

Parkers sick February 20, 2010

I just wanted to update everyone on what is happening with our little parker boy. He started to not do too well on Thurs. day. He was very lathargic and very irratable. His breathing was very labored and gasping. his face was swollen and the meds that are supposed to take that away fluid werent working. Cardiology told me to take him in to be assesed by his pediatrtion but he wasnt working and so I took him to emerg. Fri morn. We checked his o2 levels and they were very low, in the 50s and 60s they always want him to be at least above 70%. They poked him at least 10 times and were still unsucessfull at getting an iv started, so we got him on o2 and then got a chest xray and an echo. The echo tec. was very concerned and said he thought that we need to push very hard to go to calgary he looked at an echo that was done 2 months ago and the function of the heart is down considerabley. They sent us to the peds floor they called to have a transport team come and get him and he was on the helicopter an hour and a half later. We rushed up to calgary and when we got there his cardiologist had just finished another xray and echo. So what she said was that his heart is very overly large. His liver and his ateries are also very large. What is happening is that his heart cant keep up with the blood that is coming in his heart and it cant pump it out quick enough so it backs up in to the body and thus the swelling everywhere. So he is now in the pediatric icu and on a new drug. It needs to be monitored so while he's on it he will be in the icu. We will know if it will help his heart in 4-5 days. On a more positive note he is only on 1 L of o2 which is very good, he was on 15L. and he is becoming a little bit more aware and himself. He got to drink some milk today and he loved that but what they are giving him isnt enough in his eyes he just wants more. They need to make sure that his body stays more on the dryer side so that he wont start retaining fluid again. So he is going to have to get a new heart sooner or later. His doc said "not if but when" so we are just going to have to play the waiting game. Thankyou everyone for the prayers and your thoughts. Parks and Jim and I and our family need them now more than ever. We love you and hope we can see you soon. Love Jes and Jim and Parker.