Home Again

As I sit down at the desk this morning, I glance over to the Office calendar and the date showing is Wednesday April 13. "I know about your diabolical plan. I found a copy of it in the copier tray." Ryan, to Dwight. That was the day we left home, not knowing how long we were going to be gone. We were preparing for about a month, as last time was 46 days in total in the hospital. We made it by this time in a mere 12! We came out a little more grey, and a lot more thankful. Chris and I had one time together away from the hospital (ok out front of the hospital) Where we could connect and decompress a little. Other than that we were where we needed to be, at Owen's side, or resting at Ron's. The kicker here is that when you are so immersed in a situation, it is hard to actually digest what is actually going on. I felt the only emotional releases I had were on my drives/shuttles over to Ron's, and then I stuffed them away so that I could sleep. There was too much to be done at the hospital, between playing with Owen, calming him for iv placements/labs, helping manage pain, giving massages to Owen, distracting him during ECHOs and EKG's, feeding/changing, pumping, being available for when the care team came around, reading to Owen, distracting him from pulling/itching at his sternal incision, chest tubes, ng tube, 3 leads, O2 sat monitor, blood pressure cuff, and IV sites. There was just enough time to eat and pump, but it was even busier than home, so I was off most days in my pumping. It takes a lot for me to miss a meal, however! Basically, his oxygen levels were the same without oxygen as they were on 2liters. He hangs out in the low-mid 70-s. When calm or sleeping he goes up into the low 80's, and when crying or mad he dips into the mid 60's. This variability is normal for cyanotic birth defects. You may be thinking-His sats didn't really improve much- which has been on our minds as well. The fact of the matter is that Owen's surgeries are considered palliative, which means they are not curative. They are surgical band aids that allow him to grow, and have a good shot at activity and living. But he will never be 100%. As long as the team is fine with him, so are we! We just accept that he is stable and move on! When you get the green light for discharge, you just go go go, pack, and get outta there! Chris left and went to Ron's to do laundry, and the once over with the staff member. I packed up our stuff at the hospital. The second to last thing to be packed was Owen's toys. As I was putting them in a bag, he squealed and had a fit! His first legitimate tantrum! It was hilarious!! The last thing to be packed was my frozen breastmilk. We took our last wagon ride to the car (all of our bags were in the wagon this time.) As much as we love the prius, it isn't the best for long trips or extended hospital stays... But we fit! We could have fit in a smart car if we needed to to get home! On the ride home, while Owen was in a benedryl induced nap, I couldn't help but let go of some emotion. It is such a whirlwind of emotions with any procedure your child has, let alone 4 cardiac interventions. The roller coaster was a bit smoother this time, but that memory of "last time" is still so raw that it is challenging to put that out of your thoughts. It felt so dang good to be free, to be on our way home, and Owen leaving with the same tube he came in with, no more, no less! With a quick stop into the pharmacy to stock up on prescriptions, we were home in a jif. We were welcomed by Julie and Shane, who were using their day off together to help us out. Julie was on the riding mower and Shane was alternating between the push weed wacker and the hand held. These two were out on our property until they ran out of light. It looks so amazing, and we are so grateful for your service to us. I think I'm going to log roll down the hill later on today! It looks like a park out there. Your willingness to help us out just makes me get emotional all over again. You guys are the BOMB!

When we walked into the house, Chris and I kept saying how different it looked inside. The lighting was beautiful around 5pm and it felt like we had clearer, brighter, happier glasses on. There is nothing like the sweetness of home. Thank you Jay, Mat, Elly, and Ash, and Kim, Jon, Rylee, Brody, and Taylee for all of your help around the house. Mom was able to bring us the mail halfway through our sf stay. Last night Owen's hives were getting worse, despite the round the clock benedryl. We gave him a bath with our castile soap, and put him to bed. They started to crop up again and spread about 5 hours after the dose, and 6 hours is the recommended time of administration. He seemed to sleep okay, besides itching his incision site as well. He was back to his normal, up every 3 hours schedule. We had a great morning breastfeeding session, and he is back for his nap. I am headed that way myself. Ah, to be home again!!
One of Owen's faves from last time, Linda.
Aunt Jac, Uncle Colin, and Owen buried in his crib of toys.
Owen's homeboy Vince.
Lean back...
If you look hard to the left you can see Shane working the hill!
Julie rocking it on the rider! THANK YOU!!!

Bugs, Bath, and Beyond

BUGS
Yesterday (Easter) I noticed he had some little red marks on the nape of his neck, looked just like little mosquito bites... but about 10... After some benedryl and changing his sheets, they went away. But today they are back... The fellow thinks they are hives, and havent tried anything new...hmmm. more benedryl for the chick.
BATH
Owen has been known to be the dirty kid around here, so he got a bath the other night. It wasn't super enjoyable for him, as he cannot submerge, but it got the job done. He will soon get back to playing with his rubber duckies at home.
BEYOND
Sadly, Owen has tested positive for c. diff:(. In a nutshell, this is an infection that happens either due to antibiotic overuse, or from coming in contact with another who has it. The kicker here is that it needs soap and water to be killed, not the sani gels or foams...Which get used all the time around here... not all rooms even have a sink... So the bummer for Owen is cramps (we would imagine) and lots of pooping... But so far, it hasn't been anything like the horrible bug he had in January. Hopefully he will stay hydrated and not have any complications. It seemed like we were at a standstill this weekend with his care. Weaning the oxygen happened one time, but he went into the 60's. Currently, he is at 74% laying in bed asleep, off of oxygen completely.
Haha, guess I could have used bed, bath, and beyond as the title, as my next subject is bed! Oh well. I went to Ron's last night for my first night sleeping there. It was also my second night away from my boys, and my second decent night of sleep since....hmmm... ANYWAYS, I slept from 10ish to 2ish and went right back to sleep until 7ish. Wow, that was a dose of something delectable!! Chris stayed here with Owen and Owen slept more than normal, only waking once himself. Whoot! Chris has been back at Rons today making up for some sleep he missed. Im so glad I was here today, Owen had to get another echo to make sure his pleural space looked good. He was sad pants during that, and right after I needed to pump but as usual Owen needed his mommy too. So, that sweet little man was my pump! For 30minutes! Wahoooo! It was comical and wonderful all at once, and really made me feel so happy for pumping. I know moms who pump forever and dont get the bonus of breastfeeding. The comical part was I was standing, and Owen was laying on his side in his crib, with all of his tubes behind him. I didn't move a muscle because his sats were in the high 70's-low 80's! We snuggled a lot today, and his tummy doesn't seem to be bugging him too much. I'm going to eat while he is snuggled in bed. Hope Easter was wonderful, it was interesting being here. A volunteer brought an easter basket for Owen, so nice! Next year will be even sweeter!

Still here.....

We are still here. As I guessed we were not able to go home today and I know that we won't be able to go tomorrow as well. We were unable to remove Owen from the oxygen today. When we tried his oxygen saturation dropped to low into the 60's for the medical people out there. Don't freak out though the goal after this surgery is 75 to 85 %. When we were admitted his sats were only 65 so he would have benefited from some oxygen at home. This kid does great despite the problems. For the none medical people out there your oxygen saturation for me and You should be around 100% unless you smoke which is bad for you by the way and it stinks. I have talked with the doctors and asked why we don't have an improvement in his saturation's and they say it takes time sometimes for things to go back to normal. Owen also has some pulmonary hypertension which could be the problem behind this whole thing now. With Owens new anatomy half of his bodies blood is draining into his lungs passively. So if he has pulmonary hypertension the blood can not flow into the lungs because there is to much pressure that it is going against. In a normal heart your right ventricle is able to pump all of this blood through with no difficulty unless you smoke. They have medications for this and the main one is viagra. Yes it can help you breath and have an erection at the same time. In Owens case it will help decrease pulmonary hypertension. We have not started that yet we will wait and see over the next day or so.

Chelsea was able to get some better sleep last night. Owen was back on his normal sleeping routine with the chest tubes out and has not even required any pain meds since the chest tubes came out. Other than that Owen and I watched baby Einstein 10 times today, we also walked up and down the hall in the red wagon with oxygen about 20 times laughing all the way. Chelseas dad came by to visit and brought some good home cooked food for us all including home made ice cream sandwiches. Good thoughts for tomorrow for improving conditions because we are going slightly crazy in the little closet that they call a room. Sorry it's short but I lack energy to do more and I have to do some laundry. I hope that you got the take home message that smoking is bad and you should take care of your normally functioning heart and lungs...

The "H" bomb.

So, big day today. Owen had all of his chest tubes and pacer wires removed from his chest today. This was a great thing to have done. I can not even imagine how those feel and hurt under your ribs with every breath. Owen has already had his discharge echo done today so that is one less thing that will have to be done. They will continue to monitor him over night and start to slowly remove his oxygen. They have mentioned that there might be a possibility of going home tomorrow night. I have a feeling that this is not going to work out. I think that will be pushing it. So I bet we will be out of here by Sunday or Monday if all goes as planned. The H bomb stands for home if you were wondering.

Owen had a lot of wagon rides again today. It is like being on a smile parade. He just makes everyone smile as he goes down the hall. I have not seen 1 person not smile when seeing this little fatty coming down the hall. All of Owens nurses ans doctors really seem to get a kick out of him and how much he will laugh at them. There is a lot of care and compassion that goes in to taking are of Owen and us. Owen received his first bath tonight since we have been here and boy was it over due. He was the stinky kid on the unit for sure.

Owen had some visitors today. Jac and Collin came by and brought Owen a lot of new toys to play with. He loves his new toys and the two of them. Owen and I on the day shift when Chelsea is not there watch a lot of baby Einstein. The same one over and over again. He loves the little puppets and just laughs and laughs at them. I don't see the humor but he does for some reason.

The tiredness continues to linger and what makes it worse is the small little space that we are in with Owen and another pt. I have wanted on many occasions to slap people for being loud. For those of you who have kids know that naps missed is a setup for bad things to come. Poor Owen can never catch a break. If it's not one thing it's another that will wake him up. For the most part Owens neighbors recognize that he is sleeping and try to be quiet but what they don't know if they are not Owen will just keep them awake all night. We feel bad because they keep putting Older kids in the room with him and you know that they are pissed by morning, Owen never sleeps well at home and Chelsea says He has been waking up almost every hour on the hour at night. Hopefully we will be in our own beds soon and still not be sleeping well but at least we will be a home.

Sunny Thursday in SF

Outside, together!

Owen laying back on 7North. This gorgeous view is right outside our room.

The golden gate to the right, and the ocean to the left. Not bad scenery.

The cutest patient ever. Yes we are a little partial:).






Today has been a great day. Owen is doing so well, and went on 2 wagon rides today. Chris took him on one when I went to Ron's for a nap. He is quite a hit in the hallway, making people smile left and right. He has been sitting up most of the day, and crossing his feet like usual. We are still waiting on 2 chest tubes...One is still milky and putting out just a little of yucko stuff. The team wants the chest tubes in until there is no drainage...Who knows when that is, but we hope it is soon. He is putting out
about 10mls/day. He is also working on his oxygen levels. They range from 65-85 even on 2 liters of oxygen. This is something that everyone anticipates will normalize (up to 75-85) without oxygen... That is something that we also will wait out and see how he does. Another thing we are waiting on is his meds. He has been on a blood pressure lowering med via iv, as well as iv lasix. They have yet to switch him to PO/ng medications for those. But it is so nice to see him acting like himself, pulling tubes, putting random things in his mouth, smiling and having his voice back. He had a very sore throat from being intubated, and I would say his cry and voice is back about 90%. We have had a great RN today who basically shoved us out the door. She said Owen was her only patient and told us to go enjoy the sun. So we went outside and sat for about half an hour and enjoyed being outside. We then had some frozen yogurt like old times:). Owen is becoming quite the tv junkie and has his own personal dvd player. He has been watching baby einstein when awake and laughs at the puppets that used to scare him!











We are so dang lucky that Owen is healing and doing so well. We are so thankful every minute, and even though we are tired, it does not compare to what he has to go through. He is so awesome, it amazes us both.











Owen got to visit with one of his favorite RNs from last time, and in the middle of the night I saw another one. I wasn't speaking clearly or thinking clearly but hopefully she can come see Owen soon. We had her a lot when we were here before, and in 12 hours you get to know people pretty well.











I forgot to thank Rebekah, Jeff, and Sera for our yummy dinner from Beautifull last night. The restaurant took longer than their slated delivery time and wanted to comp another meal to us another time. Double Score!!











A big thank you to our house sitters, egg getters, and mail collectors! Thank you to the Bowens for watching Owen's "doggie Blue". Owen misses her, but we hope to be home soon.

Well we have been slacking in the blogging department due to excelling in a few other departments, namely: 1. Tube watch for Owen 2. Switching between night and day shift between Chris and I
3. Napping at any chance possible 4. one of us staying at Owen's bedside 24/7

This experience is much different than before. Owen doesn't sleep all day, so we can't necessarily go out to eat and know he will be out for 2-3 hours. We also don't want to leave! We have been parents a little longer and know that even though he has good care we just want our eyes and ears here as well.

Yesterday we transferred out of ICU. I was at Ron's sleeping when Owen and Chris came to the step down unit. This was a step in the right direction for sure. Unfortunately Owen had a de-satting episode into the 50's shortly upon arriving to the unit. Chris noticed that the oxygen level was a different gauge and it was set to .2 versus 2 liters. That was not optimal! When the time comes, Owen will be weaned off of it, not just a decrease all of the sudden... He recovered after about an hour. It is never a restful time when he does that, he always takes a while to recover. Must be his unique anatomy and ability to continue to freak us out. We are at the point where you just have to joke about it, though. I was telling the RN last night about how a lot of moms I know think that their babies getting their shots is a big deal (it is, and it is all relative, I know:)) but the thing to be happy for is when your baby cries he/she doesn't turn a nasty color of purple/blue/grey....

Which brings me to yesterday. Mom and Wynt came by to see Owen. Owen got a beautiful easter basket from Wynt and she enjoyed reading him all of her books. Grandma got some good time with Owen as well, she lets him crinkle books... those grandmas are such spoilers! It was a challenge to work in getting a few hours of sleep but I went to Rons in time to get back for visitors. Wynt and Mom were going to watch Owen so Chris and I could spend a little time together. After owen's de-satting episode we decided it wasn't a good idea to leave, and he was also getting a chest xray (daily routine here...) so we wanted to be around for that. There wouldn't be much peace of mind leaving. We are so lucky that Wynter came from Dad's with cooked stuffed shells with homemade pesto and tomato sauce. Perfect! So we ate that for a late dinner in Owens room and then they took off. Chris hung out for a little while longer and I vented a little about being tired and feeling a little wacky. As usual he listened and consoled. I have contemplated switching to the 'day shift' but I am already on this schedule of staying the night here, then catching 2-3 hours thru the day that I don't want to try to get back to the other way. I think it might be harder now.

So I was staying awake a bit to start Owen's feed, pump, etc, when he woke after being asleep for about 15mins. He was very irritable and seemed in pain. We opted for some meds to calm him and chill him out. His IV site appeared to not be working...and needed another access point. He is on a continuous infusion of a blood pressure med which needs an iv, and they just like to have access, especially because he still is randomly desatting, and he doesn't really make anyone too comfortable yet, between his chest tube, sats, etc. So, to make a long story longer, it took 2 hours, 4 RNS, 1 MD, and 5 pokes to get another access point IV for baby O. I normally just go with the flow, but man, this was from 11-1 in the morning... the one night we didn't have a roomate!! One I got over the fact of not getting sleep, I was there for Owen. He needed blow-by which is additional oxygen because he was so freaking out that he was turning aformentioned colors that are not becoming to anyone. He finally was so exhausted that after the iv was placed and they were taping him up he fell asleep.

WHEW! Today was no exception for roller coasters. Chris noticed Owen's chest tube pleuro-vac wasn't bubbling (therefore not suctioning) and also that his chest tube did not appear to be all the way in his chest. This called for a stat chest xray (told you this was a daily routine) to confirm that he did not have air in his chest. I think. This stuff is usually Chris's forte. So, he was fine, and chest tube came out. Wynt, mom, and the girls came back, and we went out to lunch. Pomelo, soooo good. It was good to hug on the girls since it is hard to hug on Owen at this point. I did get to hold Owen today and he was trying to breastfeed but that little bugger thought I was a teething toy or something and wasn't into it... OUCH!

I left and went to Rons to pump and nap and shower. The minute my head hit the pillow our neighbors stormed into their room and started making a ruckus... Thanks to my earphones and relaxing massage music I was able to sleep for a couple hours. Got up, showered, pumped again, and ordered some dinner from a friend who called and arranged for us to get it delivered to Ron's. I did this and made my way to Rons. I thought. There were all kinds of crazy police blocking off the street and our driver said it was the pres. Didnt know he was going to be in SF but I don't even know what day it is... Saw the whole motor brigade but no limo... Hmmmm.

Ok we are going to blog as often as we can but it is harder than last time to blog every night. Much love to all, and hope to not sign off from SF too much longer. Keep us all in your thoughts, please, we need it.

Yesterday amidst everything Chris got the news that his declining grandmother Mary isn't doing well. We wish we could be closer to be with family but we need to be with Owen. Mary is such a sweet lady, I have many good memories with and of her.

Monday, Monday

Owen has done well today by interacting more with Chelsea and myself. He seems to get a kick out of all the staff. He loves to smile at them. As for the chyle leak- we are still watching the chest tube drainage. The surgeon was less concerned with this because the volume that is coming out is so small. This is good and we will continue to watch this and pray that it does not get worse. Labs are looking good and vitals are holding stable. We are still in the cardiac ICU and will continue to be probably for the next few days. They continue to remove fluid from Owen with increased Lasix over the past 2 days which he has been doing well with. He still has his chest tubes, pacer wires, arterial line, and cardiac line in and I think tomorrow we will start to remove some of that stuff. Owen's best friend Evan came to visit but only Jeremy and Erika could come and see him. The friends had to kept apart for germ reasons but soon enough Evan will be ready to help Owen again try to remove his NG tube like in the past. What are friends for? It was nice to have visitors today to change up the routine a little. Not much happened today. Just tried to keep a 9 month old busy from trying to pull everything out. I heard that there was a little more sleep last night which is good for him. I can not even imagine how he feels. It is sad to watch him when he coughs, we know it has to hurt so bad with the chest tubes that are rubbing on the ribs and the fact the his chest has been spread apart doesn't help either. They changed the dressing on his incision and said that everything is looking good. Poor kid has a lot of bruises from multiple IV attempts. On a better note the Dietitian came by to see Owen and was very impressed with what Chelsea has been doing with Owen. I don't think a lot of people know how much time, effort, Patience and love that it takes to get through all of his feeding everyday. The amount of effort that Chelsea has put into Owen is amazing. He is not an easy baby at feeding time.