Friday, December 14, 2007
Wednesday, December 05, 2007
Monday, October 29, 2007
Mom has moved to Clearwater and is still slowing getting settled in. It has been a lot of fun to have her so close. We go over often on random Sundays to have a family dinner after church and to work on projects. She has also watched the kids for us many times. It is great to have her close.
Dad and Mattie have already taken off to Arizona for the winter. They were still here this year for grandparents day at the kids school and were able to come. It was a lot of fun to have them come for the first time. They will come back as needed for work.
Lana our old nanny got married a few weeks ago. That was fun to be part of.
A very difficult thing that we have been faced with this past weekend is one of our drivers died in a motorcycle accident. It was a very hard thing to hear and we will be going to the funeral on Friday. His name was Paul Brennen and he was 33. Prayers for his family and friends would be wonderful.
Ashley and Ethan are doing great in school and are still loving up Jaden a ton. They argue over who gets to play with him. It is very sweet.
Jaden had his cardiology appointment last week and Chip said his heart function looked very good. He said overall Jaden looks wonderful. We are still planning on waiting until he weighs 30 pounds. He weighs 20lbs 11oz. He no longer is having OT or Speech (for eating) come. He is however about to start speech (for speaking) next week. He is only saying mama right now. He also is going to see a Dietician because he just does not get enough nutrients. They want him to drink Pediasure for his nutritional needs but that is very high in sugar so we are trying to find an alternative. He is happier then ever and is so glad to be alive. He is always smiling and still stealing the hearts of all who meet him. I will try to post some pictures soon.
Thank you to all who still support us in prayers and phone calls. We are living each day to the fullest and love life.
Love to you all, Steph
Thursday, September 20, 2007
Jaden has been doing excellent. He is walking and almost running without falling. He climbs on everything and likes to get a hold of all the things he is not supposed to. He says mama barely and that is all for words. He is eating a little better. He mostly eats (very healthy) potato chips, cookies, chocolate (he is a very smart boy for liking this one) and soup. That is what his diet mostly consists of. We try feeding him everything we eat but it usually ends up in Misty (our dogs) mouth. Give Jaden a chip though and Misty doesn't even have a chance with that one. He is gaining nice (probably from all of those chips and cookies.
OT and Speech only come once a month now and his nurse (wonderful Jenny) is actually done coming until next month when he has to get his Synegis shots monthly.
So overall, he is doing wonderful.
The sad part of this post... Steph T. and I have been following a baby for the last 10 months who also had HLHS but also his heart was on the outside of his body. HLHS is very complicated the way it is. Add on the outside factor and it makes for a very tough situation. This baby's name was Aiden. He went to be with God 2 days ago. Heather Lane, his mother was a single mother and moved from Georgia to Philly and quit her job to take care of her son who had been in the hospital his entire 10 months of life. She is a very strong woman and did this only with the help of God. She is now in mourning and needs a lot of prayer. Please send some her way. If you would like to go to her site, here is the link. This just makes you realize who little time we have in life. Go to carepages.com and then you put in the CarePage Name: AidenScottLane
Thank you for the prayers for the Lane family...
Saturday, June 16, 2007
I am sorry I have not posted for such a long time. I have been on a "computer strike" for awhile. I have not opened my computer unless I really have had to. I have had many of you asking when I am updating again so here I am. I am so sorry.
Things have been going really well for our family. Ashley and Ethan are having fun doing different summer activites. Ethan just started a gymnastics/karate class and just finished his swimming lessons for the summer. Ashley, Audrey (niece), Wendy (sis in-law) and I are going to be in Joseph and the Amazing Technocolor Dreamcoat play the last two weeks of July. We started rehersals this past week and are having soooooo much fun. If you want tickets let me know. I will get good seats for you. I think they are around $10.
Jaden is doing wonderful. His last appointment with the cardiologist was good. Chip said he did not hear the S3 noise anymore and the function was almost where he wanted it to be. We do not have to go back until October. YEAH!!!! Jaden still is not eating well. Sometimes he will eat good but most of the time not. Speech is still coming once a week to help with that. He is crawling wonderfully and is going up and down stairs good. He is not walking yet. OT comes every other week to work with him.
Our business is very busy. We have a lot of work for our drivers and our shop is staying busy with all of our trucks. We have a lot of other FedEx contractors coming in with their trucks and then some people from church. We still are working on a sign so have not done too much more with advertising. We will start in the next few weeks.
We are having our annual Fathers Day Campout. We are at the cabin this year so not much "camping out." Today we went on a long bike ride on the Paul Bunyon Trail and then to the park and then to get a root beer float.
I will try to post more often. We have a busy summer of travel and camping. We are going to Iowa for a little family reunion the last weekend of this month. We will be taking a 2 week road trip in our mini home to New York the first 2 weeks of August. We are also going to the cities for a week the end of August for the National Driving Championship stuff that Sal is helping with. We love the summer!!!! We like to stay busy.
Hope you enjoyed the pictures above. We just took them today so we could post them.
Tuesday, April 10, 2007
"Its a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.
One of the sweetest angels say to Jesus "I dont want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit.
She is still not swayed on this idea. So Jesus kneals down, and says "how about if you leave half of your heart here with me and take the other half with you, will that be okay". The angel smiles and says "I guess that will work".
But the little angel is still a little scared. She askes "will I be okay with only half of my heart?" Jesus replies, "of course you will, I have other angels there that will help out, and you will be fine."
Then Jesus gives the angel more details about his plan, he says "when you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday."
"And when its time to come back to heaven, I will make your heart whole again" Always remember that you are not broken, just torn between two loves"
He has not been eating or sleeping well this past week. He gets pretty fussy at night when he wakes up. He usually wants to eat at these times but has not wanted to eat and just been fussy. Jenny comes today to check him out and then we are going to set up a cardiologist appointment as well for him.
He loves life and is always smiling and laughing and has even started to be loud. It is fun to see all of these changes in him.
We continue to ask for prayers for him and our family as we are watching him daily hoping for lots of growth and hitting milestones.
Much love, Steph
Wednesday, April 04, 2007
This day last year my body was preparing as were the doctors and the NICU unit to bring Jaden into this world. He is truely a gift from God and an absolute miracle.
We could have not gotten to this day without the support, prayers and love from all of you. Thank you to all for the gift's you have given us.
We will celebrate his life tonight and have some ice cream cake which is one of the only non baby food he will eat. We will post his picture with his cake later on.
Monday, April 02, 2007
I am also including a picture of Giants Causeway because it is an absolutely amazing place!
If you go to: www.northantrim.com/giantscauseway.htm you can read more about it.
This is a great idea and I am anxious to hear about any responses you may receive!! GOOD LUCK!!!
Happy Birthday Jaden!!
Wednesday, March 28, 2007
Well, a week from today and Jaden turns 1!!! How amazing and wonderful that God has given us Jaden for this 1st year. We hope that God has some huge plans for Jaden and keeps him around for many, many more birthdays.
We are going to celebrate his birthday as a family and we are also doing a special project for him. It will be written below. We will then have a combined birthday party for him and Ethan when the weather is nice. Ethan's birthday is around Christmas time so he does not ever get a birthday party that includes friends so we have chosen to do it with Jaden's.
This letter below is what quite a few of us have been sending out to different people around the world. This is the project that we are working on for Jaden and hope this turns out to be an inspirational thing for all who are touched by it. Please participate in sending a letter to Jaden or putting a bottle in the ocean if you feel lead to do so..........
**We are celebrating the life of our baby boy who was born with a congenital heart disease called Hypo-Plastic Left Heart Syndrome. He will be turning one year old April 4, 2007. We want to honor him with something very special and have decided to do it by also by encouraging others to become more aware of the heart diseases that affect millions.
We are asking that anyone who lives by the ocean write a letter (sample below) in Jaden's honor, put it in a bottle, seal it and throw it into the ocean. We are asking that those who find the bottle write a letter or post on the blog something special such as; an encouraging thought, a prayer, poem or an experience they have had with heart disease. We will take these letters and/or posts on the blog and make a special album. This album will honor Jaden and all others who have gone through what babies/children with heart disease's have to face each day.
This will be an exciting thing to see how many people respond, how they respond and where they respond from. Thank you to all who are participating. We also will encourage not only those who find the bottles to send letters or to post on the blog, but also those who come across this as well to send something.
Sample Letter To Put In A Bottle...
"Jaden Austin Gonzalez. Baby boy born April 4, 2006 with a congenital heart disease called Hypo-Plastic Left Heart Syndrome. This heart disease is where only one half of your heart has been developed. This disease requires a minimum of 3 open heart surgeries to take place within the first 4 years of your life. At some point, people who have this heart disease will require a heart transplant. Jaden has been through so much already as he has already had his first 2 surgeries, 2 heart catherizations and has had a stent put in.
He is turning one in just a few days. We are celebrating his life thus far and are outreaching to those across the world. We are hoping this letter finds you and helps encourage you to become more aware of the heart disease's that are affecting our babies daily.
Our family is asking you to send a letter with a special poem, words or encouragement, a prayer or experience you have encountered with heart disease to our baby Jaden. We will compile all of the letters we receive in a special album which will honor Jaden and all of the other babies affected by these diseases. Most of all we will honor God as He is the one who made it possible for Jaden to be alive on his 1st birthday.
The address to send this letter to is:
PO Box 24
Sauk Rapids, MN 56379-0024
You can also go to the blog and post something there as well:
Thank you for being a part of our journey.
The Gonzalez Family" **
Friday, March 23, 2007
He still is not wanting to eat any solids. Speech will start next week and come to help figure out how to get him to want to eat. He has issues with the textures and always starts gagging. Every few days he will eat about half a jar of baby food. This will be a hard step for him to take as well.
We were supposed to have a cardiology appointment this week but of course Chip is out of town (as always) and cancelled it. Chip had said he definitly does not want to wait until Jaden turns one to have his appointment due to his bad heart function, but it looks like that is what will happen.
Less then 2 weeks and Jaden turns one. We can't believe how fast and slow this has gone by. It is amazing when looking back at all we have been through and where we are now. Jaden is a big boy now and has 5 teeth working on his 6th. He weighs 16lbs. 3oz. He is doing well overall.
We took our very first family trip out of the state since Jaden has been born. It was a very needed and overdue trip. We drove to Florida for a little over a week. We stopped in Louisiana on our way to see the hurricane damage. We then went beach hopping and stayed at Panama City Beach, St. Pete's Beach, Cocoa Beach, Savannah Georgia and Myrtle Beach S. Carolina. We had such a good time. Jaden was very amazed at how the sand felt and was shocked when feeling the ocean. Ash and Ethan did not want to come home. I will post pictures soon. It has been crazy as ever since we have been back.
Much love to you all, Steph
Wednesday, March 07, 2007
Thanks to all for joining us in this ball.
Wednesday, February 28, 2007
Jaden's cardiology appointment ended up just being an echo. Dr. Chip was supposed to meet with us but of course ended up being out of town. Go figure. He did call to tell me the results though. He said Jaden's heart function has improved since last time but it still was not where it should be. He wants to continue what we are doing with his meds and then check again in a few weeks to see how it is doing then.
Jaden is doing fine overall and is cutting 3 teeth so is a little on the crabby side of life. When he forgets that his teeth are coming in he is very happy and wanting to explore. OT is coming weekly and is very pleased with his improvements on his movements. We are still working very hard on trying to get him to crawl and have tummy time.
Jaden will be one in a little over a month. How the time has gone so fast. It is amazing what life brings us.
Love to you all, Steph
p.s. make sure to map yourself down below.
Tuesday, February 27, 2007
Saturday, February 17, 2007
Jaden has been having Occupational Therapy now for 2 weeks. He does not like that at all but needs it very much. This will be a weekly appointment at our house. We have a cardiologist appointment next week. We are hoping for some good results with the med changes we made.
We have also had a lot going on with Valentine's day things, appointments of all types and planning for Ashley and Audrey's birthday party... We are having a "royal ball." We have a ballroom and everything. It will be a lot of fun and a great time to just let loose from this very difficult past year we have all had. Adults as well as the children are required to dress up. There is a wide range from king's to dragons to knights to princesses. It will be a lot of fun seeing what everyone comes dressed as. We will be posting a slide show afterwards. I may have to make a montage of it since there will be a lot of pictures. We will see.
I will try to keep up my posting's weekly. I am sorry I have not but it has been quite difficult to even have the energy to pick up the computer with all else that is going on. I do see many of you are still checking regularly and again I am sorry for not being consistent.
Wednesday, February 07, 2007
If you follow this link instead, there is a list for 4 examples of S3 and the S4 rythyms (I had no idea such a thing existed). http://www.childrenshospital.org/cfapps/mml/index.cfm?CAT=subtopic&SUBTOPIC_ID=1101
By the way, the S4 has the cadence of the syllables "ten-nes-see," and that one is a little easier to distinguish.
As for information about the significance of the gallop rythym with HLHS, I couldn't find a thing on it at all. It just another example of Jaden's way of being extra special I guess!
Edited to add: Did you know that 80% of pregnant women have an S3? Hmmm... This website has some great information: http://www.chfpatients.com/faq/s3s4.htm
Thursday, February 01, 2007
Jaden has been doing pretty good overall. He is slowly getting to where he needs to be. He is still not eating any solids. We did find that he likes ice cream though. We will obviously hold off on that for just a few more months.
Occupational Therapy came yesterday to evaluate him and they said that he is very behind in his transitions from position to position. He is also very weak in his arms. We will be having OT come once a week to help get him where he needs to be. She is bringing a stimulation brush next week and we will rub it all over his body to help him with that. She said this is all very normal for his circumstances.
We had our cardiologist appointment today. Chip said he looked very good but then when he listened to him he heard what he called a "S3." This is something that is new to Jaden. Chip got concerned being that he had not had this before. So we did an Echo and EKG. After the Echo was done Chip came in and said his heart function was not good at all. He put Jaden back on Digoxin which helps with the heart function and has increased his Captopril as well. These together should help him function much easier and hopefully will make this "noise" go away. We have to go back Feb. 21st for another Echo to see if there is any change. If not then we will have to take a much more drastic measure. Chip seemed concerned but was trying to soften it. I am much wiser then that and could read his concern very well. I think he just is truly hoping that the change in meds will help. So we will see what happens in a few weeks. Hopefully all is back to where it needs to be.
We will continue to update weekly unless things come up. Thank you all for your support again.
Monday, January 29, 2007
An elderly Chinese woman had two large pots, each hung on the ends of a pole
which she carried across her neck. One of the pots had a crack in it while
other pot was perfect and always delivered a full portion of water. At
of the long walk from the stream to the house, the cracked pot
arrived only half
full. For a full two years this went on daily, with the
woman bringing home only
one and a half pots of water. Of course, the
perfect pot was proud of its
accomplishments. But the poor cracked pot was
ashamed of its own imperfection,
and miserable that it could only do half of
what it had been made to do. After 2
years of what it perceived to be bitter
failure, it spoke to the woman one day
by the stream. "I am ashamed of
myself, because this crack in my side causes
water to leak out all the way
back to your house." The old woman smiled, "Did
you notice that there are
flowers on your side of the path, but not on the other
pot's side?" "That's
because I have always known about your flaw, so I planted
flower seeds on
your side of the path, and every day while we walk back, you
"For two years I have been able to pick these beautiful flowers to
the table." Without you being just the way you are, there would not be
beauty to grace the house." Each of us has our own unique flaw. But it's
cracks and flaws we each have that make our lives together so very
interesting and rewarding. You've just got to take each person for what they
and look for the good in them.
Thursday, January 25, 2007
Things have been going very well for us. It feels so nice that we can get settled back into our routine once again. We have been very busy trying to catch up with all that fell behind.
Ashley is doing better in school since we have returned home. She has a dance performance this Saturday and a gymnastics performance in February along with her 7th birthday.
Ethan is a smart guy. I went to pre-school with him last Friday and he showed me how smart he really is. He was spelling words that most kids don't spell until they get to kindergarten. I was so proud of him. Some of the little girls in his class were fighting over who got to work with him through out the entire class period.
Ash and Ethan are both excelling in swimming lessons and love the water. They are also having a lot of fun going to Awana every week.
Jaden is doing much better. He is getting a little more independent during the day and will actually let me set him down some now. He still is not sleeping well at night and he still is not eating any jar foods. He is eating his bottles wonderfully though and is gaining some good weight. I will be keeping on top of his not eating things other then his bottles. I do not want it to get so bad that they want to do something about it later. I will keep working hard on this one. I need no reason to be sent anywhere. We are meeting with Occupational Therapy to see if they can help.
Sal and I are very busy trying to get our mechanic shop in full swing now. I am working on the flyer and business cards. We will pass the flyers out, mail some and post some in local business's, our church and school. We are excited to see it get busier. FedEx is as busy as ever for us as well. We just purchased another truck yesterday.
Thank you in abundance for all of your continued love and support. We have so many wonderful people in our lives and we are truly blessed.
Love to you all, Steph
Saturday, January 20, 2007
Monday, January 15, 2007
Our time home has been very good. Wednesday, Thursday and half of Friday was a little difficult. Jaden was still pretty fussy and not that comfortable.
Friday night and the rest of the weekend went really well. Jaden was more content and was playing a lot. We still had to sit by him when he played. When we got up he still would cry.
He also has been sleeping a lot better as well. We have only had to get up 4-6 times a night which is a big improvemnet. Yesterday late afternoon he did start to get more uncomfortable over all. He was up again more last night. This morning though he did wonderful and played in the living room and I was able to even be in the kitchen. He did this for about 45 minutes. It was a huge accomplishment.
Now we just need to keep seeing these improvements of him sleeping well at night, being more comfortable all the time and also eating better. He has been drinking his bottles fine but wants nothing to do with jar food. We have tried all kinds and kinds he used to like but he now likes nothing.
I will post a picture soon and even a clip with him laughing. He has been actually doing that some too which is wonderful.
Wednesday, January 10, 2007
We are all home safe and sound. We have already been smothered with an abundance of kisses from Ashley and Ethan. They are very excited that we are home and keep talking 50 miles an hour. It feels really good to be here and hopefully we will get all settled in tomorrow. We have some changes to Jaden's meds and we need to organize his feeding things as well.
Sal and I are very tired as we had an extremely long week and are letting down now. We are not motivated to do much. Hopefully we all get a good nights sleep so we can kick it into gear more tomorrow.
Thank you again for all of your love, support and prayers.
Tuesday, January 09, 2007
Jaden had his CT Scan and another Spinal Tap done today. The Spinal Tap came out really good. He had pressure last week of 20 and today it was 14. This is in a normal range and they were all very pleased with what they had found. The CT Scan came back with pretty much everything at normal. The only thing that was not normal was the liver. It is not seen as a problem as there was only a little section where blood had not gotten to and the liver grows back with no problems.
So after everyone got together and reviewed all that has happened, they all believe that we should go home and give Jaden some time to re-adjust to the different pressures in his body. They are hoping that the changes they had to make to his heart is just taking a lot longer then it normally would and that he will be fine very soon.
So we will be going home tomorrow. We still need a lot of prayers as we still are not 100% sure what is causing the discomfort he is still having. We do not want to go home and then have to come right back again. Thank you to everyone as we have gotten so much support and it has helped us tremendously.
Monday, January 08, 2007
The Dr.s all came in this morning after talking and we have all agreed on doing a CT scan of Jaden's abdominal area. We will do that tomorrow morning at 9am. At that time, we will also do another Spinal Tap to re-check his pressures. If after these tests we find nothing, we will put him on some medication which is to help with relieving pressure.
No one really knows what should be done next so we are trying to cover every area. So we will have to put another line in Jaden in order to do this. We have already talked with Barry who has gotten 3 of his lines in the past and he is already preparing. Hopefully he will be able to get it in in one try like the past. We need lots of prayers for Barry and his ability, for Jaden and the strength he needs and for us to find some answers.
Sunday, January 07, 2007
Today has been up and down. The morning was very difficult. Jaden was clearly uncomfortable and nothing helped him. The Resident was in looking at him and was a little panicked as he was so miserable, his lips were pretty purple and his leg was swollen. We watched him really carefully and looked and listened to everything. They did an ultrasound to check his legs for clots and it turned out normal.
It was dad's birthday today so him and Mattie came over and we had birthday cake and ice cream. Jaden let dad hold him for a few minutes with out crying. I guess that was Jaden's birthday present to his grandpa.
Sal went back to St. Cloud tonight to take care of some things at home and to catch up on a little sleep. He will come back tomorrow after he is done with his things.
Everyone is still uncertain what is going on with Jaden. It is very clear that he is still not better even though they fixed his heart. We are all trying to figure out what road to go down next. We will be talking a lot with the Dr.s tomorrow to see what would be the best option.
Sending our love.
Saturday, January 06, 2007
Things are going fine and we are now on the floor. We are monitoring his eating and his comfort level. He has been doing pretty well for the most part but has his times where he clearly is not comfortable and is inconsolable. He has been eating less then normal as well. Hopefully tonight goes well and he can get some good rest.
Thank you again to all who have been praying for our family.
Friday, January 05, 2007
Today has been a long one. After they were done fixing Jaden up they brought him up to PICU. We then meet with the team that was in the procedure room and went through all that had happened. They ended up placing a stent in the artery, they ballooned another area and coiled another area which was sending to much blood to the lungs. They are hoping that this will solve the problems he is having with the pressure. They are not sure if it will help as one of the areas they worked on did not seem to change anything.
So now we will just watch and see for the next day or two if he is more comfortable. Jenni, one of the nurse practitioner's got an actual stent with a catheter that had a balloon on it. She showed us how they insert it and then blow up the balloon which blows up the stent. It was amazing to see. Jaden had an echo right away to check everything as well as an x-ray.
Since Jaden is in the PICU, we are not allowed to sleep in the room with him. So Sal and I will be rotating sitting in the the glider in his room. When we are not in the room, we will be sleeping in the lounge. Steph T. came down and is staying with the kids at the RMH and will be watching them tomorrow for us. She will bring them back and forth from there to the hospital. Ronald McDonald is supposed to come and visit tomorrow. The kids have missed him every time and have been waiting so long to meet him so hopefully they won't miss him tomorrow.
I am off so I can go and relieve Sal. We will keep you posted on his progress and what we find with the pressure in his head.
Then at 12:30 the Dr. came out to tell us some bad news. He instantly said Jaden was fine but there were some problems. They found that his left pulmanary artery is only 2 cm where it should be about 7 cm so they will attempt to put in a stent and open it up to 6 cm. Normally there is only a small area that is narrowed but Jaden's entire artery is narrowed. This can be very hard to fix and could cause some problems as well. Due to the narrowing of the PA there were some additional vessels that were automatically produce by his body. They are going to attempt to close them up by putting on coils. The other thing that they found was where they attached his artery to his pulmanary artery they found that it was also narrow. They will also attempt to open it up wider by putting in some type of medical ballon.
At 1:15 they called to let us know that they have finished putting the stent into the artery and will work on the other problems.
On top of all of this that is going on, they found that where they were trying to put the line in the neck area that is ended up being an old clot. This obviously is from his last surgery. So the Dr. is really worried that he has a clotting disorder so they have already sent blood up to be checked for that. This could cause major problems for him depending on what they find.
In other words, we need tons of prayers as there is a lot we now have to work through.
We will update later but please get those prayers pouring in. Thank you, Steph and Sal
Jaden is getting his Heart Cath. right now. They took him back around 8:30 a.m. to sedate him, intibate him and work on getting his lines in. They said this first step will take about 1 hour. After they are all prepared, it will take a good 2 hours to do the rest. They will be checking pressures and looking to see if the narrowing that they had detected earlier which they did not think was a problem, is truely the problem. If it is a problem, they will put a balloon or a stent in.
We will hope all goes well and that the procedure goes uncomplicated. We will also hope they find what is causing the pressure so they can fix it and then Jaden can be happy and comfortable again.
When they are done with the procedure, they will have to monitor him and watch to see when he is ready to be extibated. Hopefully this will not take long.
We will update as soon as we know what is going on and after things settle down. Thank you all for the prayers.
Love, Sal and Steph
Thursday, January 04, 2007
This morning she was talking with the neurologist and he made his cute little comment that he was going to go "off stage" to talk with the rest of the team. Steph asked why he couldn't just bring the team in so that she could be included in the conversation/brainstorming. So he did...the whole gang of them came in before too long. :) Here is the deal. Yesterday Jaden seemed to be improving some, and they suppose it is because pressure from the fluid had been relieved some. However last night he developed a fever of 102.7 and an odd rash. The rash was large bumps at first (like mosquito bites) and today the bumps have subsided and they are more like red spots. So what is the fever and rash from? And how is Jaden feeling today?
The fever and rash could either be a virus that needs to work through his system, or it could be an allergic reaction to the sedation meds they used yesterday. Jaden is back to feeling as crummy as he was at home. :(
When they did an echo, they noticed that an artery is narrowing some, and it was not a concern. But now they think that it may be related to (a cause of?) the fluid pressure. It has been decided that a heart cath is definitely necessary. When they do the heart cath they will be able to see things better and also will be able to either insert a balloon or a stint if needed. But there is the issue of the fever now as well. Do they do the heart cath tomorrow (Friday) morning and risk extra complications? The other option is to wait until Monday or Tuesday of next week. If they decide to wait, then there is the issue of Jaden being so uncomfortable. There is a pain med that they can give him over the weekend to make him feel better, but what if he is having a reaction to the sedation and what if he reacts to this med as well? How will anyone know what is the reaction and what is the cause?
Needless to say, Steph and Sal have a lot of things to consider along with the doctors over the next few hours. On top of that we have sweet Ashley and Ethan waiting at home for their mommy and daddy and also confused about what is going on. Steph's heart is so torn between her children! Either way they go, Jaden will definitely be staying in the hospital over the weekend, and hopefully Steph and Sal will have enough energy to keep up the rotations. They are doing so great with him!!
Please pray for Jaden especially, but also remember the rest of the family in your prayers as well.
Wednesday, January 03, 2007
Jaden had his tests today and we have an answer to his pain but not a complete answer and not a solution at this point.
The MRI showed a few areas in the head where there was fluid. They also found that the spinal tap showed pressure. Normally a child Jaden's age would have about 12-15 cm of water in the spinal area and Jaden has 20 cm. The Dr. called what they found Increased Intracranial Pressure. The Cardiologists and the Neurologists will be meeting in the morning to determine the next plan. One route is to do his Heart Cath. which they would probably do Friday if they choose that route.
The Neurologists explained to us that Jaden will have some delays academically. He said he will be fine with his walking and functioning like that, we will just see it in school. We are fine with that because we know he is a very smart baby and he is here to prove everyone wrong so he will be just fine. I mean after all, he is a Krueger-Gonzalez mix. Who could be any smarter and determined then one with that blood in them!?
We will let you know what the plan is tomorrow. Off to bed.
Just a quick update. Jaden and Sal had a sleepover in the hospital last night and I went to the RMH to get some sleep. Sal had to drive to St. Cloud last night to do payroll and then came back to the hospital and got here around 11:30pm. Jaden stayed up until around 1am and then slept so so for the rest of the night. I came in this morning around 6:45 and then Sal went to the RMH to try to sleep for a few hours.
Vascular Access is going to put a line in him in an hour which he needs for his procedures today. I said only Barry could try so they sent him down and he has already looked at his arms and legs and put
some numbing stuff on it. Jaden will be getting an MRI, MRV and the Spinal Tap like Steph said last night. They could not get him in for a Heart Cath. today. Because he is not getting that done then he will not need to be intibated which is nice.
Hopefully they will figure something out with these tests today. The Dr's have all been very good. They know this one is a puzzler and needs some major brainstorming.
Tuesday, January 02, 2007
That's it for now!
They met with lots of cardiologists and a neurologist (who happens to have a fantastic sense of humor). They had some initial bloodwork as well. Everyone there is stumped, but they all agree that something is wrong. The neurologist says from his initial examination that he does not think it is a neurology issue (He joked that it is "Gonzalez syndrome"). The cardiologists do not think it is a heart issue. They will keep Jaden overnight and tomorrow he will be sedated and have a heart cath done. While he is sedated they will also go ahead and do all the neurology checks that they need to do. Since this is pretty major, Jaden will for sure be staying tomorrow night and they are not sure how long after that. Steph asked what will happen if tomorrow's tests come back "normal" and they said that they would keep him until they either figure it out or Jaden gets better.
There is no question that Jaden understands where he is at. He freaks out when anyone comes near him. :( Steph & Sal took him for a walk (he loves the elevators and being in his strollers), and he was so happy while they were "out," even though in pain. When they got back to the floor and saw a nurse, Jaden started crying. It must be so hard to watch him going through this and not know what to do to help.
Everyone is trying hard to think outside the box, but it is obvious that there is no clear answer at this point, and they are starting with the obvious tests, even though it doesn't seem like they will find an answer. Jaden and his doctors need your prayers!
Monday, January 01, 2007
HAPPY NEW YEAR!!! We hope you all had a wonderful end of the year. We started the night with a movie. Sal and Colin went to see Rocky Balboa and Kelly, myself and the kids went to see Charlott's Web. It was a lot of fun and Jaden was wonderful and took a nap through most of the movie. We then came home and Robyn, Bill, Kelly and Colin came to end the year out with us. We played games and ate good food. We were so involved in our game that we did not even get to see the ball drop and when one of us noticed the time, it was already about 15 minutes past midnight. Ashley and Ethan crashed in their rooms around 11pm and Jaden stayed awake ALLLLL night.
Jaden is having better days but still having VERY difficult nights. He also is still crying every time we need to lay him down to change his diaper. We are going tomorrow to start and try to figure out what is going on with him. We have talked and are going to try and have Jaden be an outpatient for his tests until something is figured out. I am not sure if they will go for that idea but that is our goal. We are calling Chip first thing in the morning and will see what he says.
Sending a new year cheer your way. Love, Steph