Doctors Visits

Hello! As promised, an update post doctors visits. 


First of all, on April 13 Tristan had his GI appointment. He last saw Dr. John Stephen 7 weeks prior with the weight of 20 lbs 2 oz. On this visit, Tristan's weight was 22 lbs and 4 oz. So a 2 lbs and 2 oz gain in 7 weeks! That's a lot of weight! Dr. Stephens was delighted with the weight gain, but concerned how Cardiology would feel about it. Worried the rapid weight gain might be too taxing on the heart. There are no signs of edema or swelling. Tristan has a nice round face and even carries a little pot belly. Dr. Stephen's recommendation was to drop down to 16 oz of Pediasure 1.5 and 8 oz of normal Pediasure per day (total 24 oz). Plus, start pushing the solid food intake. He requested we come back for another follow up visit in 12 weeks. Due to his vacation and such, we are returning at the end of June (28th). As Ann was leaving, he complimented us on how well we've done with Tristan both with the feeding and also with the parenting of a cardiac child. He talked about how many of his chronic condition kids seem to rule the roost. When they come for a visit, he said the child destroys the examining room and pounds on his computer while the parents sit there and say nothing. He appreciated the fact we use the word, "No" and were engaged with Tristan. As parents, we feel under the microscope all the time. It was nice to hear some encouragement and positive comments.


Today, we had the cardiology appointment and saw Dr. Marshall Lewis. Tristan had not been to the cardiologist since late December 2011. The good news is that Tristan appears fairly stable. His oxygen saturation was 82% for his foot. His blood pressure was good. The echo cardiogram from January was read by colleague of Dr. Lewis and she noted that there was moderate Tricuspid Valve Regurgitation (TR), but Dr. Lewis said by listening to Tristan via stethoscope, he could not hear it. Of course the echocardiogram would be more accurate, but the good news is that it can't be all that bad if it is not heard. Dr. Lewis is concerned about the rapid weight gain. We told him about Dr. Stephen (GI) plan to decrease the amount of Pediasure 1.5 to 16 oz per day. Dr. Lewis suggested we completely go back to regular Pediasure. A phone call has been made to Dr. Stephen's office informing him that his concern was accurate. We are awaiting to see what he wants to do now. Plan: Another sedated echo in July with a follow up appointment with Dr. Chandrasekhar (the cardiologist that has seen Tristan the most lately) within a week. If Tristan is stable, the plan is to then stop the Digoxin, increase the Aspirin and follow up every 3 months. The third surgery (Fontan) won't happen for another year or so.


As you can imagine the slowing down of weight gain is a complete 180 degrees from what we've been working on. For the past 22 months all we've done is focus heavily on getting weight on Tristan. First it was enough weight for the second surgery and then he was diagnosed with failure to thrive. Mentally, the concern about gaining too much now is understandable. We don't want to make is cardiac load too much for Tristan's weak heart, but at the same time it is hard to change one's thinking. For so long it was EAT, EAT, EAT....WEIGHT, WEIGHT, WEIGHT....


Truthfully, in some ways it is relief. The stress of getting him to drink the Pediasure 1.5 has been weighing so heavily on us. The pressure at times can be overwhelming. The thought of perhaps backing off on some of the Pediasure 1.5 to perhaps 18-20 oz per day and maybe really focusing on getting him to eat regular table food would be a good goal. But we await to hear from GI before we change anything.


Yes, there are many ups and downs with having a cardiac child. We're learning to roll with the punches and do what is best for Tristan. One big grin like the one in the picture, makes it all worth it!


On another note, Gene's parents are in town for the week to help out while Gene is in Orlando for a conference/seminar. Life is always better when Granny and Paw are here....Tristan had not seen them in a couple of months, but he picked up where they left off. All smiles and laughter....Can you hear the giggling from here?

Happy Easter

He is risen indeed, Alleluia!


The season of Lent and Easter was a busy one for this Johnson family! Nothing too out of the ordinary for a pastor, his and wife and child. We are happy to report since the last post Tristan has been steadily gaining weight. He is still dealing with the solid oral feeding issue, but we know this is not going resolve quickly. We see the GI doctor this coming Friday and then have a Cardiology appointment the following Monday. We'll be sure to give an update after those two visits. 


Below I've added some pictures from this morning. We had a visitor this morning who dropped off some gifts in celebration of Easter. What a surprise! Then we headed off to church for the second service. Tristan is now sound asleep, taking  a nap.





And finally, we added a festive tune. If you know Ann well, you won't even have to guess which song it is. Click on the play arrow and enjoy!

Busy January Month/ Heart Awareness Month

 



  Wow! This has been a crazy month.  At the beginning of the month we went on a seven day cruise with Gene's parents and sister. We had a wonderful time visiting St. Maarten, Puerto Rico and Haiti. It was nice to get away and just relax....okay relax as much as you can with a one year old. Still, Tristan did much better than we anticipated and we look forward to going on another one soon (?). 


Next Ann's Dad and Step-Mom came to visit. Tristan had not seen the Schroeder grandparents since May 2011. We were not sure how long it would take him to warm up to them, but it seemed almost instant. We had a wonderful time spending time together. The weather was perfect for a day at the beach and checking out the manatees. Time flew by quickly and before we knew it, it was time to say goodbye. Ann's Mom and Step-Dad were supposed to visit a day later, but with battling sinus infections they decided to post pone their visit.


We look forward to the return of Gene's sister and Mom in about 2 weeks. We truly enjoy friends and family making trips down to see us and we appreciate all the time and effort everyone has made to make it happen.


Tristan is battling his third cold of the season. It's been a week already and it has only gotten slightly better. His nose is like a faucet. His demeanor and energy level is normal and his lungs sound clear so we think this is just a typical childhood cold. His solid food intake has dropped, but he is at least still taking the Pediasure...with some encouragement and convincing. He had another GI appointment last Friday (1/27/12). In three weeks, Tristan had only gained one ounce. One lousy ounce. The MD decided to chalk it up to the cold and we will revisit him in a month. We were instructed to weigh him weekly. If we did not see an increase or if he loses weight, we are supposed to call the MD to get him in sooner. Here's hoping to be above the 20 lb mark by Feb 24th!


When we got back from the cruise, Tristan also had his sedated ECHO. The results are good. His heart looks stable and no real changes to worry about. We go back in three months for another check up.


Soap box Alert....


Okay, the dreaded awareness talk. I promise, I only say this once at this time of the year. February is Heart Awareness Month. February 7th-14th is specifically Congenital Heart Defect Awareness Week. A small reminder that 1 in 100 babies are born with a heart defect. More children die of a Congenital Heart Defect (CHD) each year than all pediatric cancers combined. Yet research for pediatric oncology gets 5 times more money. But wait!!......what about The American Heart Association, don't they do a lot of good? Yes! They do a lot to promote public awareness, but The American Heart Association directs only $.30 of every dollar donated for research. The rest of it goes for administration costs, education, and fundraising. Of that $.30 only $.01 goes toward CHD research. (http://www.itsmyheart.org/chd-information/chd-facts/). No, I don't want money taken away from pediatric oncology research.  I just want more research money being used for CHD. 
  
We all hope and pray Tristan will live a long and happy life. The sad statistic is 50% of children with HLHS have a life span of about 10 years.  If Tristan lives to be the same age as I am , he will be considered ancient in the HLHS world. I am asking everyone to spread awareness so that maybe....some day...... we will know what exactly causes HLHS and can prevent it....and maybe....some day....no child will have to fight for his/her life from the moment they are born.

Below are some pictures from the last month

GI Appointment

Tristan has his second GI appointment in 2 weeks. The good new? He gained 11 oz in the two weeks! The G-tube talk has been officially tabled....for at least 3 more weeks. We'll return to the GI office the last week of January to do another weight check. We are so happy with this progress! Tristan's oral feeding is getting better with more practice. It's still at the beginning phase but the volume of food is getting higher. Instead of getting about 5-6 macaroni noodles down in one sitting, we are seeing 12-16! That is more than double from 3 weeks ago. 


His lack of talking is still an issue. He was tested a couple weeks ago and it was determined he has a true delay. We will start Speech Therapy for talking soon (not just for eating). 


Pray the positive progress continues. 


We will update about the sedated ECHO on January 17th.


(BTW--the nice bruise you see on the head is from him running into our living room end table).

Happy New Year

Gene and Tristan before church service this morning.

It's been a long time since I last updated the Blog. Right after Thanksgiving, Tristan developed a horrible cold that lasted 2 weeks. We then had a lovely visit from Ann's twin sister and sons (Alex, Isaac, and Evan). The night they left, Tristan started vomiting from a viral bug. By Wednesday evening both Ann and Gene caught it too. Thursday morning we were headed to the ER with Tristan due to his lethargy and not acting like himself. After a 3 day hospital admission, Tristan is back to 100%.  The follow up appointments after a hospitalization stay included a trip to the pediatrician, GI doctor, and the cardiologist. Everyone is concerned about Tristan's lack or slow of weight gain. The early talks of a G-tube or some other feeding tube has been broached. We will see the GI doctor again this Thursday to look at Tristan weight. The cardiologist wants a sedated ECHO to get a good look at Tristan's heart. We are scheduled for that on January 17th at 0700 at St. Mary's Hospital. The EKG at the office showed a strange/different PR interval. Tristan's cardiologist is concerned it shows the beginning signs of SVT (Supraventricular Tachycardia). His heart COULD have created a new electrical pathway, so the cardiologist is looking at a possible WPW Syndrome (Wolff-Parkinson-White Syndrome). The good news is that Tristan does not appear to show any signs of tachycardia or WPW. It all could just be a blip on the small EKG strip that was taken at the office; especially since the QRS does not appear abnormal. The sedated ECHO and the 12 lead EKG on 1/17 will give us a more definitive answer. 


Otherwise.....Tristan looks good. He is finally eating more solid foods. He is slowly but surely mastering the whole chew and swallow sequence. It's not great, but it is a whole lot better. The gagging and vomiting at the dinner table has lessened greatly. At most meals, he no longer does it all. The switched seemed to happen on Christmas Eve. All of the sudden he seem to use his teeth to break down his food and swallow. What a FANTASTIC Christmas gift to us!! The hard part is finding foods that are fairly easy to chew and swallow and also has a lot of calories in it! Now, how do we cook high calorie foods without us gaining the weight with him???!!!


We will update what the GI doc says this coming Thursday. We hope Tristan's oral intake of solid foods picks up and he will be able to avoid the whole G-tube talk.

Many blessings to your 2012 year. We pray the coming year is full for joy, love, peace, health and happiness for all of you!

Happy Thanksgiving

As Thanksgiving approaches this Thursday, we want to take time out to wish everyone a wonderful (and safe) Thanksgiving. We have so many things to be thankful for : Family, Friends, Jobs, Health...to just name a few. But most of all, we are thankful for a loving God who gave us His only son. Without Jesus, we would have nothing to be truly thankful for. 

Happy Thanksgiving from our family to yours 

Tristan's Hand 18 months old

The Christmas Season....

Tristan seeing the Christmas Tree 2011

Tristan's First Christmas 2010

I know that we said we would post a home movie of Tristan eating next....and I assure you, it is coming, but tonight we started to put our Christmas tree up. It is not completely decorated yet, but it's  beginning to look like Christmas.  


Amazing the difference in a child in one year. I see Tristan in the Exersaucer and I can barely remember that little guy.  So much growing and learning with a child this age. I am so thankful for all the pictures and videos we have of him. I love seeing the world through his eyes: the wonderment of everything around him.