Progress!

No more ventilator! Ash is breathing on his own. They will keep adjusting oxygen until hopefully he won't need that, either. Rv and la lines are gone, also. Hopefully I can hold him this evening. Yay Asher!

More Updates

Asher had a good night, he continues to stay stable. They have turned off the Fentanyl (a sedative), and started him on Lasix (a diuretic).So currently he is on: Digoxin, Milrinone, Calcium Chloride, DEX (which has been lowered), Lasix, and Hydrocortisone. They are supplementing his Magnesium and Pottasium as needed. He still has the 3 chest tubes and one drain in his belly. They just removed his RV line, which measures pressures in his right ventricle. They plan on taking out his LA line in an hour; it measures pressures in his Left Atrium. They are giving him morphine periodically for pain. Later in the day, they plan on removing his ventilator. Yay! Progress! Adam is leaving to go back to Utah at 1pm; he's glad to see Tay and Jon, sad to leave Ash and myself. It will be lonelier for me, but I'm glad the kids will have daddy back. Ronald Mcdonald called last night, saying tehy have room for me. The family I'm staying with graciously offered to let me stay there, so I'm just going to stay put. I'm getting attached to Lilly, Ayva and little Naomi! I will update later in the day, after the vent ius removed. Love you all, thank you for all of your love, mnessages, help, and support.

Wednesday

Asher was relatively stable throughout the night. He still has the "JET" syndrome, where his heart is beating irregularly, but it is more stable than yesterday. Currently, his heart rate is about 115, and his bp is somewhere around 70. The Dr's did rounds a little while ago, and they are positive about his progress, If we can have 24 hours of a stable heart rate and blood pressure, they will start weaning him from sedation and the ventilator. Medications he is currently on: Digoxin, Milrinone, Calcium Chloride, Fentanyl, DEX, and hydrocortisone. They stopped his Epinephrine and Dopamine, and have lowered his dosage on DEX and Calcium Chloride. He still has the ventilator, is sedated, and has 3 drainage tubes in his chest and 1 in his abdomen. But things are looking up from yesterday.

Still no room at Ronald McDonald, and I am so sad that Adam is leaving tomorrow. It will be much more lonely here at the hospital. I'm glad we are staying with a family, it's nice coming home to a full house and cute kids excited to see me! And my lucky cute kids get to see their Daddy tomorrow night; Taylor has been counting down the days ever since we left. I will update again if we find out anythinig else.

Photos

More News

Okay, today has been very up and down! Ash's heart rate was staying very high (about 190), and his blood pressure was quite low. They did an ultrasound and found excess fluid in his belly. So they put a drain in (now he has 4), and a lot of fluid has been coming out. His heart rate and blood pressure is getting more stable. They did an ekg, and they are doing an echo right now. They are also tweaking his medication, starting something called digoxin. They are trying to get his heart back into a normal rhythm. I'm hanging on by a thread, Adam is wiped out, sleeping in a parent room here. We miss our kids, miss our family, miss our home, and I can't believe I'll be here another 2-3 weeks.

On a better note, the ward out here has been fantastic. So helpful! The Nielson's have been so sweet, letting us stay in their guest room and helping whenever they can. (Ronald McDonald House is still full). Another family in their ward very kindly gave us their 2nd car yesterday, so we can use it while we are here. The Stake President stopped by the hospital last night to chat with us whhile Ash was in surgery. I don't know how people go through things like this without the church, and the kindness of family and friends. Thank You soo much.

Update

Asher did well most of the night. 2/3rds through the night, his heart rate would rapidly increase, and then decrease. The time the heart rate is high is gradually getting longer, and the time it is normal is getting shorter. It is an arrythmia called "JET". It is to be expected after this type of surgery, because the heart is swelling so much. He is on several different drugs right now: Versed, Milrinone, DEX, Epinephrine, Calcium Chloride, Fentanyl, and Dopamine. To try and help with the heart rate, while still keeping a good blood pressure, they have stopped the Versed, and are giving him the DEX. They are also keeping his body temp low. The nurse says things are going to be worst over the next couple of days, because of the heart being so swollen. I will update more if things change.

Surgery is over!

We just spoke with Dr. Reddy. Surgery is complete, everything went well, they were able to fix all of the defects. He was also able to close the chest, which is good! Our surgeon was very upbeat and enrgized, which was surprising considering the hour! We will get to see Ash at midnight, and then off to bed.

Almost Done

The nurse just called. Surgery will be complete in 45 minutes; the surgeon should come talk to us soon. Once they are done, it will still be an hour before we can see Asher.

Surgery Update

I just got a call from the nurse. Everything is going well with the surgery. Asher is stable. However, they don't think they'll be done until 11pm, because they got such a late start. We are very tired, but otherwise okay. Thank you for the love, prayers, and support.

Surgery

Anesthesiologist took Asher back 30 minutes ago. So sad, Ash was smiling at us as they walked away with him. Dr. Reddy, the surgeon, thinks it will take 6 to 8 hours. He also said there is one MAPCA that he will unifocalize, the rest will be removed. Eating lunch know, will update later as we know more.

Surgery

Just a quick post. Surgery will begin at noon today, we are heading to the hospital at 11:00. I will post updates throughout the day as we receive them. Thank you for all the prayers.

San Francisco

We picked up Asher this morning. His night went well, and we got a full night of sleep! Rather than staying at the house all day, we decided to hop on the train and check out San Francisco. Today was beautiful and warm. Ash was soo well behaved too. We did lots if walking, went to the park, and saw the Museum of Modern Art. We got in free, because we needed to plug in Ashers oxygen to recharge the battery. I think they felt bad for us! We also ate some fantastic Indian food. We trekked back to the train (we walked at least five miles today, lugging a stroller and oxygen!) and Tyler (whose house we're staying at) picked us up back in Menlo Park. Then we freshened up at home, put Ash to bed, and went out to dinner with Mindy, Tyler and some of their friends. It was a really nice date, it almost felt like a vacation! I'll post some of the pics tomorrow, I'm too tired to deal with it now.

Heart Cath

Today was the heart catheterization. Asher had to stop eating at 6 am this morning, which made for a lot of crying for us! By the time the doctors took him for the cath at noon, we were glad to see him go! They let us go into the cath lab with him, and we were able to stay there while they sedated him. Then we gave him kisses, and it was time for them to do their work. In the meantime, Adam and I went to Andronico's (super fancy grocery store!), and ordered a nice deli sandwich for lunch. We ate on the patio at an outdoor mall here, and enjoyed the beautiful landscaping. We wandered the mall a bit, then headed back to the hospital. The doctor who performed the cath (who had no bedside manner) spoke with us after 3 pm. The cath went well, there were no complications, and he came off of the ventilator without a problem. During the cath, they found that the MAPCA's (the extra arteries that come off of the aorta and connect to the lungs) are not necessary for proper lung function. All of the lobes of his lungs are receiving their blood supply from Asher's pulmonary arteries, which is good. Asher's PA's have grown a little since his last surgery, but not quite as much as they had hoped. The pressures in his heart and lungs are low, which is good.

Right now Asher is at the hospital, they wanted to keep him over night to make sure all is well. He will come home tomorrow, and then surgery will be sometime between noon and 1pm on Monday. The game plan for surgery is that they will put a patch in to widen his pulmonary arteries, they will ligate (disconnect) his MAPCA's, close all of the holes in his heart, and place a new valve and conduit connecting his pulmonary artery to his right ventricle. They will also trim some excess muscle tissue off of his right ventricle. He is not expected to come out of surgery until 11pm. It is going to be a very long day!

We had a few tears today, though it was totally unrelated to the procedure! Asher was starving when he came off of his sedation, so our nurse called ahead to the 3rd floor (where he is right now) and suggested that the nurse should order Asher's formula so he could eat when we get there. Of course, the nurse didn't do it. We get there, and they ask us what formula he takes, and then they place the order. Still no formula. They verify his formula, and I say that I really don't care what he gets, I just want him to eat. Still NO formula. It is now well past 6pm. I am totally frustrated, and start crying because my baby is starving, I can't do anything about it, and the nurses don't seem to care. So Adam steps in, talks to the nurse, and tells her how upset I am, and it really doesn't matter what we give Asher, he is starving and needs to eat, it's been over 12 hours since he had any food. FINALLY they bring us some formula for him, and I was able to feed him. Unbelievably frustrating, it would have been faster to go to the store. I wouldn't leave for the night until after shift change, so that someone I felt more comfortable with was taking care of him.

Off to bed now, will post again tomorrow!

Today

Asher had several appointments at LPCH today. First, we had his vitals checked, and his oxygen saturation hasn't changed. Still at 80%, on 1 liter of oxygen. Not so great. Then he had an echocardiogram done, and an EKG. Next we met with a PA and NP, and discussed his heart catheterization tomorrow. It will take 3 hours; they will sedate him and insert a breathing tube. Then they will inject a dye into his heart, through a vein in his groin. They will then take a bunch of different images of his heart, so that they can have a good idea of the exact anatomy of his heart, and which lobes of his lungs are supplied by which arteries. Because he has already had open heart surgery, and because of his increased oxygen need, they will keep him overnight for observation. Surgery will be monday, at about 7:30 am. We will know more tomorrow, when we meet with the surgical team.

Palo Alto is absolutely gorgeous! We wandered around a shopping center this afternoon, that is right across the street from the hospital. They had the most amazing landscaping! The weather is fantastic, as well. Our host family is so sweet, and their little girls are fun. Too bad we weren't here under different circumstances!

I will update tomorrow night, after the cath, when we have more info.

We're Here!

We flew into San Jose bright and early today. We looked like a circus at the airport, with our luggage, stroller, car seat, oxygen, and backpack. The flight went well, Asher only cried a little bit. Our hostess, Mindy, picked us up and brought us to her home. It was so sweet of her to offer us a place, since we haven't met until today! She has a beautiful home and sweet little girls. We've been relaxing and getting settled in today. Asher has a heart echocardiogram tomorrow at 11:30, then all of his pre cat bloodwork. Friday is his heart catheter; they will sedate him, inject his heart with dye, and take images of it. We don't have an exact date/time for surgery. It will be Monday or Tuesday, we'll find out tomorrow. So far so good! Thanks so much to everyone helping us out right now! We really appreciate it, especially on such short notice! It does seem Ash needed this surgery sooner rather than later, he is now on 1 liter of oxygen, even at the lower altitude. Everything happens for a reason. On a side note, Happy Birthday Jon Jon! Sorry mommy and daddy couldn't be there. Have lots of fun at the circus!

Surgery Date Change

Just got called this morning. We leave tomorrow morning for Stanford. Dr Appt's this week, Cath Friday, Surgery Monday. Holy cow, I am busy and STRESSED!

Sleeping

Jon-Jon was watching me while I made dinner tonight. I looked at him after a few minutes of quiet, and this is what I saw. So sweet! Off to put Tay to bed now; we cleaned out the garage all day today, and I'm ready for the day to be done!

Heart Babies

It is a small world. My husband's cousin just a had a baby Thursday in St George (Utah). Friday, the pediatrician heard a heart murmur. Ordered more testing, and ultimately they lifeflighted their little one up to Primary Children's in Salt Lake City. He has Totally Anamolous Pulmonary Venous Return. The artery returning from the lungs to the heart is connected on the wrong side of the heart. He will have surgery Tuesday to repair it. We went to see them Saturday night and took them dinner. Mom and Dad are doing well, but they are heading into the worst of it soon. Please pray for baby Jacob.

Oxygen

Yes, that's right. My dear friend Oxygen has returned.




And here are her two buddies. We don't have room for them, so they'll have to sleep on the floor.

Asher's oxygen saturation was borderline at hos cardiology appointment last week (76%). So Dr. P said to keep an eye on him, it may just be a fluke. (Asher has beautiful skin coloring due to his Mediterranean heritage, which beautifully masks some of his blue-ness). A week later, at his Pediatrician's appointment, his Sat's hovered between 70-75%, sometimes dipping as low as 62% (yikes!). So, oxygen has returned. Dr. P says that this is to be expected. Asher is growing very well (14 lbs at 4 months, yay!), and his heart is having a hard time keeping up with the demand being placed on it. It is becoming more apparent that he really does need this surgery in October. He has been so healthy up until this point. Even though we knew surgery was coming, I think we were living in a fairytale world over the Summer. "Oh, Asher's great! His heart is doing fine. Yeah, he needs surgery, but you wouldn't know it!" Now his oxygen tank is going to be a big glaring signal that something isn't right.

But I don't have the heart to wake him up right now and put it on him- I'll let him sleep a little longer.

Jonathan's 1st Day of Pre-School!

Okay, technically Tuesday was the first day. But I didn't like Tuesday's pics, so I had a do-over today. Jon-Jon goes to Busy Bugs pre-school with his little buddy Cameron, and he loves it! How adorable is his little tie shirt? I saw a pre-printed one online, and decided I could make it. I appliqued and then hand embroidered the tie on. Love it! Tay wants one with a bow on it.

My Day

Woke up at 6:30 (whatever happened to the days of sleeping until noon?). Fed and changed Asher. Jon woke up while I was feeding Asher, so I got him a drink and turned on cartoons (so long DVR'd Antiques Roadshow). Attempted waking up Taylor for school. Put Asher back to bed. Climbed back in bed to cuddle with hubby. 10 minutes later, woke up Taylor again. Got her dressed, and walked to school. Came home, ironed Adam's shirt, made him breakfast, sent him to work. Packed up the van to work on our apartment. Dropped the boys off at my sister's (thanks Les!). Sanded and painted a stair railing (with a trip to home depot in between). Picked up Taylor. Picked up boys. Took Taylor to dance class. Took pictures of a house for work. Picked up Taylor. Showed the apartment to a prospective tenant. Came home. Did homework with Tay. Changed a diaper, put dinner in the oven, and now I'm off to feed a baby! Whew!

Utah State Fair!

We played at the Fair yesterday and had a blast. The kids loved all the animals! Taylor had to wear her galoshes; "I don't want to get poo on my shoes, mom!". Later, when Jon stepped in some cow poo, Taylor said, "See mom, good thing I wore my boots!"

Surgery!!

Asher has a surgery date. October 13th, at the Lucille Packard Children's Hosptal in Palo Alto, California. I'll be leaving with him on October 7th; we'll either be staying at the Ronald McDonald House or with a friend of my Sister-in-law. Recovery should take 2 weeks in the hospital. This surgery is a big deal- it's called a complete unifocalization. Our Dr., Dr. Hanley, is the best in the world at this. It will take 10-12 hours. Yikes! Our cardioligist says his first surgery is like a little league game, and this is the World Series. It will be much harder to send him in for surgery this time- I didn't even cry last time, and I've already shed multiple tears over this. Ash is just so cute and fun now, he rolls over, coo's and babbles, smiles like crazy. It will be so hard to see him post op with all the tubes, machines, etc. But I know it is for the best, I know he needs it, and he is going to get the best care possible. Doesn't make it any easier, though.

On a related subject, since surgery is in October, our insurance starts all over again. What that means is we will have to pay our extremely high deductible all over again. Finances have been very tight, and we are still paying for his first surgery. Soo- If anyone would like to help out at all, we have created an account at America First Credit Union for Asher; it's the Asher James Charitable Account. Any help would be much appreciated.