Theodore's Hope of Recovery

03/04/2016

Super Teddy Update: 4/3/16

We finally made it home to Sunlakes! Even though there's Teddy's at home medical care, frequent visits to Seattle, and lots to catch up on we're so happy and grateful to be out of the hospital. Once Theodore was ok'd to leave the area at the end of his pre-op appointment we headed home. Oh how we all missed you Eastern Washington♡. Teddy's chest xrays looked better then they have since January, but the left bottom lung is a bit colapsed. His oxygen and stats. are all great and he gained a bunch of weight. His echocardigram looked unchanged and good. His Lovonax(blood thinner shot) levels were low so they upped the dose. Just means he'll be getting the shots longer then expected, they say I'll get used to giving them, I know I never will. Plus side is his electrolytes looked great which is amazing considering all the diuretics he's on. They also felt comfortable taking one med. away and lowering another to only once a day!!:) Theodore won this battle and we are praying our little has a good long break in his war with ♡♡♡♡. We love you all and thank you for your prayers, support, and well wishes!
Lots of pics below as promised in earlier post;).

01/04/2016

March 31st, 2016

Yahhh!!! Teddy's finally out of the hospital!!! We're not completely in the clear and have had to stay in the area of the hospital since Sunday. He has to have blood draws and xrays done regularly to make sure his body's still doing good on all his meds. Still much better then the hospital but also less help with him, so added stress in other departments. I can't express how happy we are to see our Teddybear in higher spirits then he's ever been in♡☆♡ him crawling, talking and laughing make it all seem worth it!! Check out day was quite a hassle, trying to figure out where to stay while we're still in seattle (hospital un able to help due to protocols), finding out teddy's insurance had been denied at some point during our stay, and packing and loading alone on discharge day all alone....it was definitely a bittersweet day to say the least. But any sort of check out is good news so Teddy and I enjoyed it. He has post op appointments tomorrow and we're praying all his tests and numbers look good. This would meen the whole family is that much closer to being home♡♡♡♡ Thank you all for your help, prayers and support so far. We'll get home eventually its just slow going;) Anything thing else anyone can spare during this on going fight is always greatly appreciated!! Love you all, Johanson family♡ (more pics to come!)

A quick update:

During Teddy's pre-op appointment they found remnants of the cold virus in his system. In order to ensure the highest possible chances of success, the surgical team decided to postpone the surgery until Teddy has no signs of any sickness in his system.

We do not yet have a new surg

18/03/2016

March 18th, 2016

Please pray for our Teddy bear!! He's in his 3rd open heart surgery right now, at a ripe age of 13 months:(. He's been on and off the ventilater for a total of 16 days and has had one catheterization along with many obstacles to hurdle through out this stay. Our family has been here at Seattle Children's Hospital for 5 weeks waiting out his colds and figuring out why his lung was rapidly filling with fluid and collapsing. But after a lot of lasix and tests, they had determined it was his heart causing all the trouble. Which is why he's in surgery now, we are asking for your prayers, support and anything anyone is willing to donate. This entire stay has been 5 times longer then originally thought and is still not over. Pray for a healthy speeding recovery for my . He's an inspiration and teaches us to have gratitude for our lives. Thank you all for the support and donations so far.♡♡♡ we will keep you updated on how his surgery went. JOHANSON FAMILY (photo taken day before surgery):) Matthew Johanson

16/03/2016

Theodore Update: 3/15/16
The last couple of weeks have been quite a roller coaster for everyone involved especially our little Teddy bear. He was on the ventilater for 10 days this last time we were in the CICU, finally was taken off March 6th. He had a diagnostic catheterization last Friday after he finally came back negitive from his cold viruses and everything else for that matter. The catheterization showed exactly what I had thought from the beginning, that his VSD(whole) in his heart is pushing more oxygenated mixed blood through his VSD which is causing alot of fluid build up in his left lung. Also his heart is so large that it adds pressure to the lung which makes his left lung collapse easier. Now that they can attribute the fluid in his lung to his heart they will have to go back in and sew up his whole. His left pulmonary branch is also narrowing, Dr Chen will either open that back up with a balloon after he sews up the VSD or Teddy will have another catheterization after surgery. That would be 3 open heart surgeries and 4 catheterizations in his 14 months of life!! Almost unbearable to think about. Even with all this teddy has stayed in good spirits (once off the ventilator) ofcourse. We are now on the "floor " waiting for his surgery day which is planned for midday Friday, pending there are know emergency heart babys/kids that need surgery more then Teddy. Waiting has been just as bad as anything... he's on so much lasix and diuretics to keep his lung from filling and collapsing. Which in turn causes him to need alot of extra meds and supplements which then causes him to throw up all his medicane and formula. It seems they think he is a machine they can fine tune and I'm the one to do the tuning. We go rounds and rounds about the benifits of supplements and formula compared to whole foods and water until we can get to an agreement. I can't force my child to drink something he doesn't like and when I do I can only do so much to help him keep it down. After a week of this and no change in Teddy's blood draws we've almost come to a point where he's only puking once or twice a day and gotten some supplements taken away. Now getting those supplements from his diet rather then meds. He is very stable in all other areas. He's on his own oxygen, eating lots of food, no feeding tube, IV's, or PIC line. Just monitoring and medicane. He had one minor hiccup, and last night we found out he has a blood clot in his neck from his PIC line, just another problem and med on top of many. Luckily this will not delay his surgery!!! This has been a very trying time for our family and like always we are forever grateful for all the continued prayers and support!! We love you all and will continue to keep you posted!♡♡♡

06/03/2016

Teddy Bear Update: 3/1 - 3/4
Tuesday night I was up all night wrestling and soothing teddy while he silently cried on the ventilater tears streaming down his face. Me feeling as if hes asking me to comfort him and make him better and I couldnt. No amount of meds would calm him. He suddenly had a fever of 104, very suddenly! (which explained the 8 hour battle of keeping him comfortable and still). We put ice cold cloths over his head and he calmed down, then surrounded him with ice packs for a couple days to keep his fever down. Still only resting for small periods of time. And I only at this point seem to adjetate him cause it makes him want me me make him better. For the first time during his whole life I feel completely lost and broken. There checking every single invasive site, urine, skin, p**p, ventilater, and heart for infection, saliva, and blood. It's so heart breaking and we were making such good progress with his lung yesterday. But it's one thing after another and teddy bear can't catch a break! Since then his fever has lowered but still occasionally rises, he's had diareah and vomiting until today. All test come back negitive and ultimately they aren't sure if or what is brewing inside him. On a good note all the tests revealed that his 2 cold viruses are finally gone and his lung is getting clearer with vigorous respitory therapy round the clock. Hoping he gets the ventilater out soon but thats all up to him and what he can handle. We have been here since valentine day and it's been a roller coaster. Still unsure if well be here another week or couple of weeks. We still have our Theodores hope foundation page and a new fundraising page if anyone would like to donate to help us through this trying time, we'd very much appreciate it. Thanks to all for the kindness and support♡♡♡♡
Youcaring:
https://www.youcaring.com/help-a-neighbor/theodore-s-hope-of-recovery/246514
Move your mountain:
Https://moveyourmountain.org/4065
☆both sites have direct deposit to our bank account, so no worries about donations going where they shouldn't!

A quick update:

During Teddy's pre-op appointment they found remnants of the cold virus in his system. In order to ensure the highest possible chances of success, the surgical team decided to postpone the surgery until Teddy has no signs of any sickness in his system.

We do not yet have a new surg

28/02/2016

Teddy Medical Update:
Things have been pretty much the same with Teddy the past couple days. He is progressing on the ventilater but very slowly and the xrays of his lungs are looking a tiny bit better with each day. Also both echo cardiograms as far as they can tell look the same as before he got sick.The doctors (his team) are giving him a couple days to see how he does. If he's not progressing at that point they'd do a diagnostic catheterization. Our little warrior would not settle down on the ventilater no matter how many and much meds they used. He even managed to move around after using a med that paralizes your body.Finally after the discovery that he was extremely itchy from the drugs, we gave him benedryl and started him on a lower constant drip of sedation/pain meds and he calmed down and has been sleepy ever since. He's not on the paralytic as of yesterday and is much more aware but not flailing or fighting it. It was so nice to see his eyes again! Ultimately no ones incredibly sure of why he had such a rapid decline because all tests and theories come back negitive. The consensus for Teddy and our family is that we could be here anywhere between 2-6 more weeks.😷♡

24/02/2016

Teddy Update:
Teddy was doing so good this whole time. He was progressing with everything, on barely any oxygen, and had his feeding tube out. Doctors were telling us we were going home...Then Tuesday at 3am he started acting really irritable and inconsolable. His work of breathing got worse through out yesterday to the point that by 6pm he was takin back up to the CICU. To find out after 9 days of progression his lungs are still filled and filling with fluid. They have ideas of why this is happening but for the most part are stumped. It will be a process of elimination until they find the core of the problem. That could very well be his heart having acute failure. He's back on the ventilator which is sad but he's much more comfortable. We are starting from square one, literally reliving last monday(real life dejavu)...This whole hospital stay has been very unexpected and we have no timeline of when we would check out or no idea of what exactly is happening with him. Please once again keep the prayers and we'll wishes coming.

20/02/2016

Teddy Update:
We moved down to the "floor" which is the next step home and also means Teddy is more stable and needs less care. He's doing great on his oxygen and in 36 hrs off the ventilater he has been weaned off his humidified pressured oxygen to a regular oxygen cannula. From there went from 8 liters to .5 liters of oxygen all yesterday!! He's still got his feeding tube in and I'm still compromising with the docs about the formula intake and letting him try on his own. They've ok me to feed him at will but with the tube in, little things to celebrate:) Today were working on doing calorie counts instead of just counting fluid intake, so that his food is taken into account also. He's still showing signs of a cold but there fading. Just to add to his struggle he's got 4 molars coming in...Theodore my little heart warrior is a tough cookie and thanks you for your support and prayers♡♡♡♡

16/02/2016

Teddy Update:
Yesterday we put him on a ventilater. He was uncomfortable and pi**ed all Sunday night. They tried 3 different Cpap masks and none of them were helping him improve they were just doing enough to keep him from working so hard to breath. He wasnt allowed to eat or drink since we arrived at wenatchee hospital sunday. This specifically could be enough to make him inconsolable, let alone everything else he has going on. So yesterday they didn't want to intabate but couldn't let him eat or drink just incase. I don't live in limbo so I told them to either let him eat and see him improve or put the ventilater in. There's no reason to subject him to more hard days which in hand stresses his heart. Ventilater went in 1 hour later and he is so much more comfortable:) it's helped him improve already and this morning they took the controlled breathing(iron lung) off to see how he did on his own with help of Cpap oxygen through the ventilater. He's holding his own and if he continues to hold his own they will be taking out the ventilater tomorrow or next day. His left lung is still full of fluid but is showing small improvements with each xray. Keep the prayers and positive thoughts coming. This time scared us but he's gonna make it through!!!♡♡

08/02/2016

CHD Awareness Week!! Check out the FB page CHD Awareness! it's a public support group that will be spreading the word on congenital heart defect and doing a close to home online bake sale. Proceeds go to children's cardiac ward or research.💜💜 It's the most under funded childhood illness/defect in America and there is no cure.

08/02/2016

Theodore is doing good, all is well with his heart. Dr. Allen did notice his VSD (hole in the heart) opening up a little more then they'd like. Nothing to be alarmed by but they're hoping it closes on its own and keeping an eye on it. He turned one yesterday and even though still recovering from surgery plus fighting a cold, he tried to enjoy the day.💪💜🎉 He's happy to be in the comfort of his home but quite irritable. His parents believe this is partly due to pain and fighting a cold but also being faced with all the physical things he isn't able to do at the moment. Even with all this Theodore our little heart warrior is staying strong and getting back to his old self with each day!
The link below has a collage of Theodore commemorating first year of life.

15/01/2016

We were finally able to see Teddy at about 10 pm last night. He looks as to be expected. Everything went better than planned when it comes to the surgery, Dr. Chen said it was a hard procedure but everything went just great. Along with the Rostelli procedure Dr. Chen also closed Teddy's large VSD (Ventricular Septal Defect), put a conduit in, and opened up his pulmonary valve even more. Theodore is still sedated and on lots of meds. The next step is getting the breathing tube out! Let's please all pray that his recovery goes smoothly♡☆♡