infection and the flu

well we are back in the hospital. i was going to blog and update everyone about our time at home and how we were all doing so well but it was short lived. we were home a total of 12 days when i noticed ty having a croup like cough, grunting and his incision starting to turn red with a fever following. it happened all so quickly. he was fine when i dropped my son off to school, next thing i know we are in our pediatricians office waiting for the ambulance to get there to take us back to PCH.

to be honest that was the most exciting thing about this whole event :) when we got to the ER they worked him up for everything under the sun (which is why i would never take my children any where else!!!) we saw one of our nurses for our admission before and she said we were gong back to the CVICU and she would be our nurse. through all the chaos God was still providing comfort in familiar faces. we were brought to the room right next door to our old room, although i think i like this room better :)

he was diagnosed with paraflu type 3, a sternal infection and sepsis..... the flu, an infection in his wound and blood. it has been a rough couple of days..going back and forth on whether or not they need to do surgery to clean the wound out or if the antibiotics will continue to work. however, i fully trust our entire team of doctors and surgeons.

i will update more...heading back in to love on him the rest of the day.

pictures

just a few iphone pictures of our stay to date......

new years day

 i didn't realize that it has been a week since i have updated all of you! i am so fortunate my husband wrote a post, lately i have been sick and stressed beyond belief.

okay quick readers digest update.

12/24 - his arterial line was removed. held ty for the first time....oh how we take that for granted. they removed the IV in his right hand and is on high flow nasal cannula at 7L. i kinda laugh at this but my son is on methadone. crazy! he got used to the continuous fentanyl drip that they had to put him on methadone. i guess you take the lesser of the two evils.

12/25 - great day! held ty all day, he was looking great! they began weaning him off his oxygen and were feeding regularly.

12/26 - Physical Therapy began working with Ty today. it was so sweet! a follow up echo (ultrasound of the heart) was done and a hole was discovered. it was causing blood to simultaneously fill up the right and left atriums. open heart surgery is required. this was a hard day knowing that after all the progress and recovery that we were going to have to start from square one. He was weaned to 2 L o2 nasal cannula and another IV placed in his right foot. he is also on PO (by mouth) motrin and lasix. we stayed the night both david and i to be with him.

12/27 - a cardiac catherization was performed to completely diagnose how and where this hole was located. dr. ellsworth (cardiologist), dr. graziano (cardiologist) and dr. dirby (surgeon) were all there. he was intubated again and put to sleep. after the procedure they came out and told us that they see the problem however it is not emergent to fix. they suggested that we wait to do surgery after Ty has fully recovered. his lungs are still very sick as they had a difficult time ventilating him while in the cath lab. it was hard to see him back on a ventilator and sedated again. since his lungs were so sick they tested him for a list of viruses and bacterias as well.

12/28 - his cultures came back positive for rhino virus (a cold) and an infection in his lungs. they started him in a 7 day antibiotic regimen and changed his right ac iv into a picc line (unfortunately they had just d/c'd his IJ (central line). we all have to gown up when we go into his room. he was extubated today. this time around was more difficult and for a few hours they were debating whether or not to just intubate (he had some upper airway swelling causing moderate stridor).

12/29 -he was able to stay extuabted all night and the stridor began to resolve with some steroids. he is on high flow NC at 9L 80% oxygen. they began feeding him again through his feeding tube. i was able to hold him again!

12/30 - remains on high flow NC down to 6L 60% oxygen. weaning down on the methadone. he slept most of the day (he needed it). BTW ty got mommy sick lol....we were so nervous about giving him something that we caught the rhino virus he had. I have it and now aubrey does too (about to cough on david and trey just so it goes through the whole house and we are rid of it by the time ty comes home.)

12/31 - weaning him off oxygen he was at .2 L today!! woohoo. weaned off of the dex (sedation medication) my baby is awake and playing (well sorta). we are also on full feeds (23cc/hour)

01/01 - we heard the words "discharge" today!!!! we are still a few days away but home is in sight. he also took the bottle for the first time since being in the hospital. he actually didn't even take an ounce but at least he tried and tolerated it (his heart rate and oxygen sats). to be honest i think some of it has to do with the fact they are fortifying my breast milk (not really sure why???) but whenever we have done this in the past he hates it...well could you blame him lol!

not sure if that was very quick lol.....hey i want this for my records too :)

12.30

 It's a bit daunting to openly spill my heart to a world of people I probably don't know deeply. It's my hope that maybe we can know each other a bit more by sharing about Ty through this blog. I'm thankful for this space to share and I'm deeply grateful for our friends who set it up for us. We will continue to give deeper updates on Ty through this space. It's very easy to hide my emotions behind the quick Facebook updates and although those are great for disseminating information, I think this blog better serves as a way for Ashley and myself to express our more raw emotions.

First, let me say thanks to my wife for letting me dally with this blog thing. You see, she is a pro in the blogging world. Her site, www.pumpkinpatching.blogspot.com is renown for amazing photos of my family and amazing insight into her life as a mom, wife, nurse, photographer, vegetarian/vegan cook and Christ follower. I could sense that she was a little hesitant when I said I wanted to put something on the blog :). Of course, she had to choose the picture. Ashley, let me tell you that I can't imagine enduring this with any other person. I know we tell each other often that we don't feel very strong, but you have exhibited strength throughout this entire ordeal. Your trust in God has strengthened me. Your faith that God is sovereign and in control has inspired me. Thanks for being the best wife and mother.
It's so comforting to see Ty look into your face when you hold him and fall, effortlessly, fast asleep.

Second, I just want to share that Ashley and I don't have it all together all of the time. We are really in need of your prayer. We have said throughout this ordeal that we trust God for every outcome, but honestly it has become harder with each new twist and turn. Anytime in the next several weeks, Ty will have his second open heart surgery. He is only 4 months old and this absolutely scares us. Despite doctors insisting he will be ok, we struggle to find peace. Ty has fallen into the small percentages that the doctors always talk about at seemingly every turn. This has us constantly second guessing everything. For now, Ty is recovering from his first surgery and his lungs need to heal before he can go back for his second operation. Unfortunately, he has an infection. Doctors are hopeful that with antibiotics he will kick the infection and be back on the road to recovery shortly. Please pray for the doctors and nurses that provide his care. We have been awed by their skill. 

We are trying to suffer with grace and wisdom. We know that we are blessed because there are parents who leave Phoenix Children's Hospital everyday and are told their child can't be fixed. We believe that in the greatest highs and deepest lows that Christ has never abandoned us. All three of our children have been such great highs in our life. Ty's issues have us in a valley, but our hearts will not abandon God. Ashley and I look forward to sharing more about Ty with you in the near future. Thanks for reading.
Dave

progress

what a day it was yesterday! first, he extubated himself the day before  (he pulled his breathing tube out) they tried to see if he could breath on his own but he was working to hard so they replaced it. all he needed was a good night and they were finally able to wean him off the breathing machine yesterday (12/23)!!! he is doing so well without it.

he was restless all day yesterday between extubating him, decreasing his pain and sedation medications and finally ummm pooping lol! however, it was so comforting to see him wide awake and moving. i had not seen that since they day we brought him in.

this little one is a fighter and a feisty one at that. i went home to have dinner as a family (trying to keep things semi normal for my other babies) and in the whole hour i was gone he pulled his chest tube out!!! remind you it is stitched in. the nurse said he was most likely kicking at it all day and it finally dislodged last night. his lungs were still wet but they said they were going to leave it out. and as of this morning his chest x-ray was better so hopefully it stays out for good.

they are now trying to keep his pain under control. he didn't sleep at all last night so they have started him on methadone..who knew! david sung to him this morning and he fell right to sleep...some things are better left to mom and dad to do.

they have increased his NG feedings to 21cc/hr. that is more total volume that he has taken since he was born! he is going to hit 10 pounds before he is discharged! they also removed is foley catheter and he finally has begun to poop.....all great things!

the only plan for today his for mom and dad to hold him....fingers crossed!

8.22

 today was a slow day.  we had high hopes the night before to wean him off the ventilator (his breathing machine) so we were slightly disappointed when he didn't tolerate it. my husband keeps reminding me that we need to cautiously optimistic.  i can not get sad or anxious when we dosen't respond immediately to weaning. however, they did wean and finally discontinue the nitric oxide they had flowing through his ventilator. the nitric oxide helps with his pulmonary hypertension. this unfortunately was created as a result of compensating for his poor heart. pulmonary hypertension is a high blood pressure in the arteries of the lung which as a result make the heart work harder. as a result the right side of the his heart has become enlarged. his enlarged heart on his chest x-ray is what gave the ED a red flag that he was not in there for an infection but for a cardiac issue.

good news is that on friday 8.21 he got a nasogastric (NG) feeding tube placed.  he started getting breast milk through it at a very small rate continuously (3cc/hr).  last night they increased it to 9cc/hr. this gives me peace. my poor baby just was not eating days before his diagnosis. he now has a fixed heart and my little man is getting the nutrition from his mama that he needs!

also by late last night they finally weaned him of of his epinephrine drip. this is a medication that was used to control his blood pressures and heart rate after surgery. praise the lord one less medication (heart medication!)

however, we did need to increase his lasix drip (a diuretic...aka a medication to make you pee). after 12 hours the increase in lasix still did not have the desired result so they started him on another diuretic iv push medication. we need the diuretics to work to help get all the fluid off of his lungs. he also has pulmonary edema (abnormal fluid build up in the air sacs of the lungs) which was caused by his heart defect.

as i look back today was a healing day. slow and steady ty and we will get there!

i am not sure where to start. my friends created this blog to help keep family updated and to help support us as a family through this trying time. thank you so much for all the prayers, comments, texts, calls and support from ALL of you! we may have not respond back to everyone but please know that we are so grateful to all of you and the love you have shown on our family especially little ty.

funny how i am a blogger and now i can not seem to find the words to describe what we are going through. i can tell you for a fact that if it where not for our faith and the strength and peace that God promises we would not be able to get through this.

ty was diagnosed on tuesday, december 18th 2012 with Total Anomalous Pulmonary Venous Return. he had open heart surgery on wednesday, decemeber 19th 2012. we had just under 8 hours to process that our 4 month old son had a heart defect and was going to require open heart surgery. this was actually a blessing, if we would have had more time to dwell on it, i am sure our anxiety would have been through the roof!

i am in the process of journaling what we have gone through everyday. i will be sharing it on here with you all. for now he is still in the cardiovascular intensive care unit sedated and on a ventilator. this is okay as he needs rest so that his body can begin to heal itself. 

thank you again jodi for setting this up so that everyone can stay update with our little man.