How Old Are You????

These pictures were taken this last weekend before his belly tap. Aaron really likes to hold onto things, lately if he's awake and grasping for things they give him his dog, duck, or bear to hold onto. (Yes Aunt Bonnie, the Alaska Bear! I need to remember to take a picture of that.)

Today I made it up for rounds. Nothing was changed so they went pretty quickly. The GI docs hadn't weighed in yet so there wasn't much to discuss. His flolan will be down to 4 tonight at 1 am so an echo was ordered for first thing tomorrow morning. If all looks good they may just take it off completely as 4 micrograms isn't enough to do much for him. Aaron's weight last night was down to 2390 and his O's stayed in the 30's most of the night and day. His side is just leaking like last time through the needle hole. The doc wanted to close it but said trying to do stitches would just create more holes to leak out of. He has a pressure dressing on it but it leaks once it gets too saturated and it is filling the diapers we place over it as well so his sheets get changed often. I was able to hold him during today's linen change this afternoon (thanks Rachel for helping out too). I certainly jump at the chance to hold him whenever I can. He did great too, settled right in to the crook of my arm.

Shortly after we changed Aaron's bed two of the GI doctors came in. They came over and introduced themselves and I couldn't help but wonder how old they were. They didn't look much older than their early 20's so I'm guessing they were either residents or fellows. I sooo wanted to ask but I behaved myself. They once again asked the question, "are there any illnesses or diseases in the family that we should know about?" And I asked, relating to GI or just in general? They were under the impression Aaron was always this swollen, I had to explain a few things to them. They also asked about my diagnosis and said it wasn't something they had heard of before, no shock there I haven't met a doctor who has yet! They talked about some labs they wanted to run and a couple ideas they were thinking of. They wanted poop, urine, and peritoneal fluid samples to run labs on. They then asked if they could take pictures of Aaron to show the "older" docs what Aaron looked like. No joke, they really said that! They asked how to lift the lid on Aaron's bed and wanted to know how to turn on the lights. The nurse and I shared a little smile and she showed them how things worked, seriously if it weren't for the nurses......

Ronny headed up just a little bit ago and I'm anxious to hear what his weight is tonight. Today he looked sooo much better. Today was the first time in a long time that when he is rolled on his side his face didn't completely swell up and he is back in the preemie size diapers. Hooray for that! Not yet back in the small preemie diapers but progress is being made, lets just pray it continues!

Another Consult

Friday we noticed that Aaron's belly was swelling up again. He was gaining weight but not too much. Saturday came and his belly was still even bigger than the day before and he gained over 100 grams. Not what we want! The plan to wean the flolan remained the same and it is being weaned 1 microgram every 12 hours. He is now down to 8 from 12. His oxygen needs have increased but they do not look to be related to the flolan. Aaron's triglyceride level also skyrocketed over the week. This was supposed to get better with the change to the special formula. I headed to the hospital early yesterday morning to be there for rounds with the new doctor (one we have had in the past, I think we have had them all now).

Rounds finally started after 1:00 p.m. I asked about this formula and that if its supposed to contain a significantly less amount of lipids as opposed to breast milk and regular formula and that the lipids it does contain are broken down already, why are his triglyceride levels going up and is it really beneficial? The answer once again, "we are not sure". They did decide that they would need the GI doctors to now come over for a consult to see if they had any ideas. I also asked if we had hit the point where Aaron needs another tap. The doctor said that was probably what needed to happen and that he would do it right after rounds. Right after rounds turned into a few hours later.

The tap did not go as well as we had hoped. The fluid seemed to have a hard time coming up through the needle into the syringe as it was leaking around it. We had hoped it would bring his oxygen needs down like it did last time. The peritoneal fluid was also different this time. It was a murkier yellow and clearly had blood in it. Instead of being clear it was hazy. I commented on this to the doctor. He asked if the last time Aaron was tapped if he was getting fed. He was not. They ran labs on this new fluid to see what came back. At this point they have run labs on everything they can think of in hopes it will give the GI docs more clues on what is going on with Aaron. The only result that came back last night was that the fluid had really high triglyceride levels in it, over 500. What that means is yet to be determined. The GI docs will be called in today.

Yesterday was a long day. I left from home around 9:00 am and didn't return until after 10:00 p.m. I was able to duck into the sacrament service there on the floor which was nice. When I left last night I was really tired. I met a couple at the elevator on their way down. They were leaving with their brand new baby girl. The mother apologized for taking so long to walk to the elevator. I told her no problem, I knew how she felt. Her husband asked if I had children. I told him I had 5 and was there visiting one. I asked if this sweet baby was their first and he said yes. The mother was clearly wiped out. I touched her arm and told her it would get better and that everything would be ok. I wanted to give her a hug and tell her how fortunate she was for being able to walk out on her own two feet (even at a slow pace) and taking that sweet baby girl with her. I didn't though, that would have been too overwhelming for her. I cried all the way home, wishing desperately that it was me taking our sweet little one home. Yesterday was day 105 and we are not any bit closer to bringing Aaron home than we were over a month ago now. Its frustrating to say the least, yet everyday we are grateful he is still here with us. The tears come when I am most tired and only make me more so. They are a double edge sword sometimes.

Stagnant

Yesterday I arrived to find Aaron not in his normal spot. A momentary bit of panic raced through me until I realized they switched him to the room across the hall. In the last few days things have become very busy in the NICU. It seems like its raining babies in there and there was a flurry of activity. Yesterday there was a massive move as they matched up twins in rooms and added more babies as they came in. Our previous room was a large room and can accommodate up to three babies so they moved Aaron across the hall to a smaller room where there are only two. Aaron is not a big fan of the commotion as he started to require more oxygen during this time.

I made it for rounds and was able to talk to the Attending. We discussed my desire for the pre machine to be added back and he was more than happy to oblige. He said that many times he will ask for things that aren't absolutely necessary but will make him feel better about what was going on and completely understands why I want it back on. They are going to give Aaron a higher dose than what they usually give of Viagra today and see if he tolerates it. If so they will start to wean him off his Flolan today. These next few days are pretty important as he really needs this to work!

After they finished their list of items they asked me if I had anything. I told them that I held Aaron the night before and he seemed to really like it and that I not only want to hold him daily, I want to hold him for every care session I am there for. Dr. Bloom looked at me a little shocked and said, "you held him last night?" I said yes, just standing over his bed and only for about 10-15 minutes but he improved on his oxygen needs and that I think he needs it. He asked me if I held him vertical, I said as much as I could with the vent tubing but certainly more elevated than the bed can do. He said, "You're the mom and you certainly know your son and what he likes and doesn't like. By all means hold him whenever you want and then tell us what we can do to mimic it when you are not here." Have I mentioned before, I really like Dr. Bloom! Aaron's O's have come back down to the 30's since I started holding him. I don't know if its because I'm holding him but I would certainly say it helps!

Aaron's stats seem to be holding steady, not getting better, not necessarily getting worse either. Just stagnant I guess. He is gaining weight again, 2410 last night, up 30 grams. His belly also got 1/2 cm bigger. I'm hoping he'll start moving in a better direction soon.

Real Quick

Last night was a really good night! When I arrived I found Aaron's pre machine was back on and picking up well. (Thank you Phil for appeasing me and honoring my request!) Splits were less than 5 the entire time I was there. After pumping it was time for Aaron's cares. His weight increased to 2380 only 20 grams so nothing to be concerned about. While changing his bedding I was able to hold him just standing by his bedside for a few minutes. When the sheets were done I asked if it was ok to just hold him for a few more minutes. Our nurse told me to hold him as long I wanted to as he was doing so well. He opened his eyes and we had a little chat. I only held him for about 10 minutes and it was a bit awkward standing next to his bed and just holding him in my hands but we both enjoyed our time. He fell asleep after a while and that's when I put him down. He had a large divet in the side of his head where my thumb was from the fluid that is still there. It's been over a month since I've really been able to hold him. His stats immediately picked up and for the first time all day his O's were down in the 30's. I read to him for another hour or so and when I left I knew he was doing much better. When I go in today I am going to talk to the Attending and nurses about holding him. As long as he is tolerating cares I think he needs to be touched and held more frequently. Babies who are full term are being held constantly and I think his little body is missing it.

"If It Gets Worse"

Being that its Wednesday its a crazy day from the start. I only get about an hour with Aaron on Wednesdays and it seems the hour gets spent catching up on rounds asking questions and pumping. Not too much time actually gets spent with just him until I go up at night while the big kids go to karate.

Today Aaron had an eye exam, we couldn't put it off another week. His eyes are doing fine, almost completely mature and no signs of ROP. He is getting his sildenafil again and will be up to the full dose by tomorrow. He had a KUB (belly x-ray) to check things out and it looks fine. His formula will get fortified with 27 calories today up from 24. His potassium looks better today so they cut that supplement in half. His weight also came down another 80 grams last night to 2360. Unfortunately his belly is firmer today than it was yesterday and he is requiring more oxygen and vent pressure support. These were the two things we have been watching for with his edema. So, if these two things don't change tonight he will most likely get another stomach tap tomorrow (possiby tonight if things get worse). With his oxygen stats increasing Ronny and I are concerned about him splitting. His pre-machine was taken off earlier this week after the echo. Today I asked the n.p. to have the nurses put the machine back on intermittently for 15 minutes to just make sure he is not splitting. The n.p. wasn't too concerned about it but I told him it would make me fill better and it was an easy thing just to put the sensor back on his arm. We'll see if my request is done when I go in tonight.

Another Busy Day

Sorry everyone our internet has been down for a couple days. I spent the morning on the phone with Qwest trying to get things sorted out only to find out after talking to several people that it was down all over town. After they got it back on in the area our account somehow was messed up and it took them hours to sort it out and get us back up. I eventually lost it with them and hung up and had Ronny deal with them when he got home tonight.

So, let me get you caught up. This weekend the doctors decided to try something new in hopes to alleviate the edema on Aaron's belly. They decided to stop giving him fat through his feedings. This means that they had to change him to formula that did not have any milk fats. They originally were going to spin my breast milk in a centrifuge to do the same thing but apparently that can't be done on a weekend, nor does the hospital stock the formula so it must be sent over from Primary's which seems to take hours to walk across the bridge. (sorry, just a little pent up frustration there!) The formula includes all the supplements he was in need of except for one so having him on the formula is actually a really good thing for his bones and he is tolerating it really well. Saturday they also decided to change out Aaron's bed. It was long over due, and it was icky! His double lumen picc line was doing odd things again so it was pulled Sunday afternoon. His milrinone was completely weaned off and his feeds were upped to 25 mls so there wasn't enough fluid to put through the line so we were fine with that decision. Aaron's CRT was low again yesterday so he also received blood early this morning. For the most part that was the gist of the weekend.

Today I arrived to hear that Aaron's echo looked really good. I had been worried about it all morning. His hypertension is under control with his meds thus far. His vent was showing signs of a significant leak so they decided to change out his tube for a bigger one. (more on this in a minute). They also decided to give him lasiks in hopes of bringing his blood pressure down and increase his urine output. His output has been averaging 4 or higher all weekend so that wasn't too concerning for me. They had plans to start the sildenafil back on today but are waiting until tomorrow with all the other things that were going on. Aaron also had a head ultrasound today which we do not yet have the results of. Today I changed two diapers on at 72 and the other at 41 and Ronny changed another 70+ diaper so the urine output is stellar today!

I stuck around for the vent tube change. This involves extubating him, bagging him, and re-intubating him with a bigger tube. I spoke with the doctor about this and he thought Aaron had done this before. I told him this was the first time a tube has been changed, he told me I may not want to be there. I told him I would be there in my designated corner. The fellow Ben who's been here all last week did the procedure. He told me sometimes it takes a few tries to get it in and that he anticipated Aaron being tricky. I told him he had 1 try, but no pressure! He did great and he did get it in on the first try. After he was done we changed the linens in the bed and weighed him. 2420 down from 2500 last night and his girth is down another cm so good news there! The size 1 diapers are getting a little big for him which is another sign that he is flushing some of the fluid off.

I need to tell a scripture story to my kids so that is all for tonight.

Joseph's Party

This last Saturday we finally got around to having Joseph's birthday party. I was a total cop out Mom this year and just had him invite a few friends to go to the movies and have cake (which I bought) and ice cream afterward, thankfully he was thrilled with the idea.
We went to see the new Spy Kids movie. The kids enjoyed it and Ronny and I survived it and kept the popcorn bowls moving down the aisle. After cake and ice cream we sent the boys outside to shoot off Joseph's rocket that his cousin gave him. Ronny wanted in on the fun too. It was fun watching these boys together having a good time.

And The Verdict Is.......Nothing! Huh?

Today was another one of those long days. This morning I called to find out how Aaron did through the night and found out his weight went up another 130 grams and his girth went up as well. I talked to the nurse about what the options were to correct this. We talked about surgical drains, intermittent taps, and transfers to Primary's. It quickly became clear that I would need to go up for rounds and most likely would need to stay for quite sometime. I called in reinforcements from friends and neighbors and quickly made arrangements for the kids to be taken care of before and after school. (thanks everyone!)

When I got to the hospital I found out Aaron's urine picked up dramatically early this morning and the nurse practitioner was turning down the vent settings. Rounds started soon after. In rounds we discussed what to do about his increasing fluid accumulation again. The doctor decided Aaron needed a surgical drain and had the fellow call over to surgery for a consult. We all agreed that we needed to get on top of the fluid retention so that we didn't end up back where we were last week. In the meantime Aaron continued to have huge diapers and great blood gases. His feeds were also moved up to 20 mls (4 less than where he was when he went NPO) and vitamin D was added back in. The plan for his feeds is to add fortifier tomorrow to add calories, and then on Sunday start back with all his supplements. He has a ton of fractures to heal! The fellow asked the Attending why he thought Aaron was accumulating fluid again and the response was, "I have no idea, we can't figure it out!"

The surgical resident came over, examined Aaron, and said that he was not a candidate for a surgical drain at this time because he wasn't bad enough, but if he got worse they would reconsider it. I told him I was concerned that today being Friday would pose problems if that "get worse" scenario happened over the weekend as it typically does. He said he would take that into consideration and speak with the Attending and get back to us. Our Attending, fellow, and n.p. came back to discuss what options we had in front of us. They decided to to an intermittent tap just to relieve some pressure and allow his belly to drain again. After getting the tray ready for the procedure the Attending came back in and said that they should wait until we got the final word from surgery. During that time they decided to turn the vent settings down again and do his "cares". We changed another large diaper and weighed him and noticed he hadn't gained any new weight from last night and his girth was down a centemeter. About an hour later they came back and said they talked to surgery and decided they were not only not going to put a drain in, they were no longer going to do a tap. They decided Aaron was doing so much better on his own and they wanted to see if this trend would continue. They then changed his vent settings a third time to allow Aaron to basically breath on his own with minimal support from the vent. Hopefully we'll be off the vent soon and back on high-flow!

So we started the day thinking Aaron would have major stuff happening today and it turned out not too much happened other than he seems to improve when we threaten big procedures. Before leaving I insisted we set in place an "if things get worse" protocol for the weekend and wanted to know what doctors would be there. The fellow we've been working with all week will stay on through the weekend and the weekend doctor would be fully prepped on Aaron's status before our Attending left for the day. I like this doctor, he takes my concerns for continuity of care very seriously which allows me to sleep much better at night!

Belly Shots

Last night we got a call telling us one of Aaron's picc-lines was going to need to be removed, the double lumen line of course. After karate last night Ronny and I headed up to see what was going on and make some decisions as to whether we wanted them to retry for another picc, try to squeak by on PIV's, or call surgery in for a central line. They had to call in a picc specialist for the procedure. When we arrived the line was still in and we asked what had happened. Apparently when he was given his antibiotic yesterday afternoon a bright red streak appeared going up his leg. The picc-nurse was called and we were called. By the time the picc nurse arrived the streak was gone. They decided to not touch anything and watch it closely. So far that line is still intact, unfortunately his arterial line went bad last night and had to be replaced.

Last night and yesterday day a flood of new babies came into the unit so Aaron once again has a neighbor. Unfortunately he is a twin and his brother is down the hall. I feel bad that the two have been separated and the Mom has to split her time between two rooms. If Aaron wasn't attached to so many machines I would volunteer to have him switch places with one of the twins so they could be together.

Today Aaron's belly is bigger. He also gained 90 grams over 24 hours which looks to be fluid. The hole in his side has now healed over so there is no longer a place for the fluid to drain out. His urine output has also slowed down again. This concerns us a great deal. He also is waking up and looks to be restless and agitated at times. The pharmacist tells me his methadone won't be fully effective until he hits its peak which will be sometime on Monday. They continue to wean the morphine but today they upped his Adavan levels so hopefully that will help. He is a little higher on his FIO2 today (30) so they decided to wait another day to wean his milrinone. I was not too concerned about this as it really depends on the nurse whether she decides to turn it down. His limits are set so high that when it alarms it only alarms for a short time as it will only alarm when he is at 99 or 100. Most of his nurses watch the monitor and if he is consistently at 97 or higher they will turn him down. Today's nurse was only turning him down with the alarm and only if it alarmed for a while.

Aaron doesn't seem to be having any problem digesting his feedings as he is stooling with each diaper and has little or no residual in his belly at each set of "cares". He was moved up to 15 mls (3 teaspoons) last night and continued at that today. He is getting about 75 calories between his TPN and breast milk. The magic number is 80 so we are almost there, hopefully tomorrow. We are hoping that once he is taking in at least 80 calories his body will start to flush the fluid through his renal system. His CRT was 43 this morning and if it drops below 40 tomorrow he will most likely get a transfusion followed by lasiks. Today is also the last day of his antibiotics. 28 days should be sufficient to kill off anything they think may have been growing. We will watch him the next few days to see if this has made a difference. Now that those are off and his TPN gets reduced as his feeds go up we are soon not going to have enough fluid to put through all his lines. We will see which line gets pulled and how long we can keep it off.

Photo Shoot

Here's the latest from the nurses. This is hanging over Aaron's bed. We love them!

3 MONTHS!

Aaron turned 3 months old yesterday. I completely got sidetracked yesterday and failed to take a picture. I will remedy that today! Aaron's heart medication continues to be weaned and his feedings continue to be increased. He is up to 10 mls. every 3 hours. A little less than half of what he was getting before he started downhill. So far he is tolerating both well. With the change over to methadone he isn't awake as much as he was before, I miss that but I would rather he sleep and heal. They are no longer replacing the fluid leaking from his side, it has slowed down considerably. His CRT was low so he received blood yesterday afternoon. His urine output has picked up some and he is pooping regularly, we hope that continues. He has a few red spots on his head and back which look like the start of pressure sores. We are doing our best to keep him off those areas but its not easy. Today he will receive an eye exam to see if there has been any damage to his eyes from the flolan and other treatment he has received in the last couple weeks. This is not an easy exam and will most likely make him upset enough to split some so we will just have to watch him closely during the exam. Yesterday his FIO2 was consistantly at 21-23 all day. They turned his mean down by 1 and he continued to stay low. He'll have a chest film this morning to check on his lungs and then we'll see what they decide to do today. Baby steps seem to be working so far. Forward......

It's A Go

Aaron's echo looked good today. Only left to right shunting, and full heart functions. He continues to have thickening in his heart muscles but the hope is that will either diminish or he will eventually grow into it. The question of when to ligate is soon going to be the golden question. Today in rounds they have determined he is ready to wean the milrenone, very slowly. Only about 10% and we will see how he does over the next 24 hours. The hope is to be off by the end of the week. His feeds have been increased to 8 mls every 3 hours which is sufficient to put sildenafil in although we are waiting on that until the milrenone is off and he is doing well. Aaron will most likely have another echo sometime this week to make sure his body is handling the wean alright.

Return of Puppy, Welcome Duck

Now that Aaron is doing better we thought we would bring the puppy photos back. During this time we added Duck. Aaron seems to really like Duck and so do the nurses, so welcome Duck!

Aaron was weighed yesterday and came in at 2430 grams, 800 grams down from his biggest weight. Down over a 1 1/2 lbs. He has about 2 more pounds or about 1000 grams of fluid to lose but he is looking soooooo much better. He is doing well on the Drager, the nitric is off and the tanks removed from his room. So far the most he has shunted right to left is 6 and that is only during "cares" where we are really messing with him, and it has only happened once. We are anxious to see his echo results tomorrow. Both Ronny and I decided it was important for me to be at rounds this morning with the new doctor so I sent him to church with the kids and headed up. Things were pretty smooth today and I was able to discuss Aaron's course of action with him. Ironically they did not round on Aaron until after 12:00 so I could have gone to most of church and still made it or attended the sacrament service at the hospital. I'll know that next week.

Assuming the echo looks the same or better they will start to wean his milrenone tomorrow. He said they will do this very slowly and keep a close eye on him. I told him he was my kind of doctor, although the last doctor did a great job with his new ideas! His feeds were increased to 4 mls every 3 hours today and his fluids kept at the same level. He is tolerating his feeds very well so far. His urine output has increased and his catheter was removed yesterday. His morphine has been set to PRN (as the nurses feel he needs it) and his standard narcotic has been changed to methadone. (Yes the same stuff they use for heroin addicts, its long lasting, and yes I did call my bro-in-law about it!) . Today he got both methadone and morphine as they were making the change so he slept most of the day. Ronny is there now and said he is awake and alert and very calm. His side continues to leak but has gone from 100 cc's in 4 hours to about 25 in 4 hours so its slowing down. This is fine as we would rather he pee it out so that his body isn't losing electrolytes. His sodium levels are back to better numbers as are his glucose and triglyceride levels.

At the end of rounds the doctor came to me and said he was concerned about the 2 week Attending rotation with Aaron's case and had heard I was as well. I about fell out of my chair! I said I was. He said that before he goes off next week he plans to call in the incoming Attending and review Aaron's history thoroughly and make recommendations as far as a continued course of action and that before he goes off he and the new doc will agree on what that is and brief Ronny and I on it before leaving. Again, about fell out of my chair! I thanked him and told him we really appreciated it and that this was what we have been asking for for some time. He said he is very hopeful that our current course will work but that this week is going to be extremely important and will tell us quite a bit about Aaron's future. Instead of telling me how serious Aaron's prognosis is he just asked me if I understood everything, asked if I agreed with it, and was ready for the outcome. I appreciated the upbeat way in which he asked and told him that we were ready to move forward.

So here we go.....Forward!

p.s. Just got tonight's weight 2200 grams!!! Down another 2oo today! Forward.....

A Plan A Plan, We Have A Plan

This has been one mighty big week for our little guy! We are thrilled with his progress! Aaron now has awake periods where he gets his eyes open and interacts with people and objects. He is doing well on the Dragger (conventional respirator) and his nitric oxide has started to be weaned and will most likely be taken off completely today. Yesterday for a 6 hour period he had a urine output of 3.3, better than any other time before. He may get his catheter removed today as he pees around it more than into it. His internal temp probe has been taken out as he has lost enough fluid that the sensors are picking his temp up again. His side is still leaking about 100 cc's in a 6 hour period as well. He gets that fluid replaced by half to try to keep his electrolyte levels up. His body is still having a hard time tolerating glucose and lipids so we are watching that. We are trying to get him up to 80 calories at least, right now we are in the high 60's and low 70's. Once he's up to 80 we know he is gaining weight and not losing it and hopefully that will trigger his body to release more of the fluid through his renal system. He is getting 1 ml of breastmilk every 3 hours. So far he is digesting that although his stomach fluid is a little odd, its making too much for how little he is getting. We are hoping to increase his amount as the days go by.

Before signing off yesterday our doctor set a plan in place and reviewed it with the incoming Attending. We have been asking for this a while now and finally this latest doctor pulled through for us and the incoming doc said he thought the plan was great and wouldn't change anything assuming all goes well. Hooray! Here's the plan: 1. Wean the nitric!!! This has been started and should be off today. Watch closely to make sure he is not shunting and keep him stabilized. After 48 hours of stablility get an echo (should be Mon. morning if all goes well)! Call the cardio guys back over to review everything and ask for their recommendations on weaning the milrenone. 2. Wean the milrenone how they recommend. If all goes well for 48 hours repeat echo. 3. Continue antibiotics for 3 or 4 more days and stop. 4. Restart sildenafil. Assuming all is going well Aaron's feeds will be steadily increasing during this time and should be able to have enough to put the sildenafil in his feeds. 4. Watch for 24 hours to make sure he is tolerating the sildenafil and start to wean slowly off the flolan. Get echos regularly to check for effectiveness. Call cardio back and decide what to do about the ligation. 5. At some point within all of this they may decide he is healthy enough to transport for a ct over at Primary's. After he is off the nitric he is able to go across the bridge. 6. Sometime, when his fluid is no longer an issue and his hypertension shows to be under control with the medication he will be extubated and put back on one of the many other breathing machines. We are hoping to go back to the high flow or another new machine they will be getting next week.

If Aaron continues to flush fluid and continues to be stable I will get to hold him again and hopefully give him a sponge bath. He really stinks! We messed with him quite a bit last night, changing his sheets, cleaning out his rolls, changing his diaper twice in one period, changed his leads, and weaned his nitric. He went up on his O2 and shunted a little bit which was to be expected but nothing over 50%. At some point his bed will need to be changed out. It is way overdue!

The atmosphere around Aaron's room is so different these days. Every one is grinning and in a better mood. Every time he gets his eyes open and starts to interact, someone runs for a camera. They have taken several pictures on the hospital camera and will burn them for us, others just take pictures on their phones and send them our way. We have watched several families we have gotten to know taking home their little ones. We cheer for each of them and know we'll be losing a few more families soon. (I shouldn't say losing, that's not a good word, graduating that is so much better). We have developed friendships with so many and love to see the progress each of their little ones are making. Progress, its a beautiful thing!

Happy Birthday Big Brother

I can't say this enough, we truly have amazing nurses! I mentioned it was Joseph's birthday yesterday at the hospital and they sent this to me yesterday afternoon. Joseph loved it! Aaron gave his big brother a wonderful gift, he opened his eyes up and lost 700 grams of fluid in a day. The great majority of it came out of his side and his head, not really what we want but its gone and he was a happy boy yesterday!

9!

Yes he is 9! Happy Birthday Joseph!

This year Joseph has been asking for wiffle balls. He asks often because every time he gets any he manages to hit them on the roof of our neighbors within minutes of taking them outside. A new rule has been set that if you want to bat the balls, you must do it at the park. Our yard is great for playing catch, a full game of ball, not so much! (I asked someone at Walmart where the wiffle balls were located, she didn't know what they were and even after describing them she looked at me like I was speaking jibberish. Seriously, who doesn't know what a wiffle ball is???)

The sweet amazing nurses taking care of Aaron today made the sweetest sign wishing Joseph a happy birthday that they had Aaron hold. They took a picture and sent it to my phone. I am in the process of getting that onto our computer (Steph can you email those to me????). Aaron had both eyes open today and so the picture taking has once again commenced and the nurses wanted to include Joseph in the excitement! (more on that later)

Joseph has been a great big brother, especially to his newest one. Joseph is constantly asking about Aaron and prays for him several times a day. He does stir up mischief but always wants to make sure others are happy. He is a top notch negotiator. Last year in the ER when the nurse needed to give him an IV he demanded that she wait until all his arguments for not getting one were exhausted. He had several!!!

We love you Joseph and hope you have a wonderful birthday even in the midst of all our chaos!

New Ideas

Today has been a busy day here at the hospital. (First let me thank Jennifer G., Mom, and Mickie for taking my kiddos today so that I could be here, you guys were lifersavers today!) A new Attending came on today and had lots of changes in store for us. At one point my jaw dropped with a few of his recommendations and thought, "Oh no here we go again". There was quite the discussion in rounds between R.T., pharmacy, the n.p. and him. I stood and listened and commented occasionally. Things got a little heated a few times. When a couple of his ideas were met with significant resisitance he sighed and said, "look everyone status quo is not helping this little one, we need to find new solutions." He made a good point, doing nothing is not getting Aaron better. After rounds he pulled me aside and said that any of these changes could put Aaron over the edge and we may not get him back and asked if I was comfortable with what he recommended. I told him I needed a few minutes to think and to talk to Ronny. We talked and decided to go forward. We feel that we would rather work towards making him better and possibly loose him in the process than to stand by and watch him continue to deteriorate. I returned to speak with the Dr. and told him to go forward but at any point I felt uncomfortable I would stop him. He agreed, so forward we are going.

His changes have included: tapping his abdomen (inserting a needle and drawing fluid out), taking him off the oscillating respirator and moving him to a jet today and hopefully by Friday a conventional respirator, upping his calorie and fluid intake, and stopping the dopamine. He feels that each of these will help him to start to flush fluid, the tap obviously to draw fluid off and then test it for infections, the change in repirators to allow his heart to fill better, and upping the calories so his body comes out of starvatioin mode. He also recommended that the antibiotics be stopped tomorrow pendinig normal levels from the abdominal fluid. (More to come on that topic!)

I was in the room for the tap (in my designated corner) and watched him draw multiple syringes of fluid off, 110 cc's approx. I watched Aaron's monitors closely and he did great through the procedure and then immediately high stated after, allowing his O2 needs to come down to 23. Just after the tap, Infectious Disease made their daily rounds. I spoke with the I.D. Attending and he recommended that Aaron have laproscopic abdominal exploration. He had called the surgeons and wanted them to come and evaluate immediately (he called the same surgeon Sam had). That made me extremely nervous! He examined Aaron again and just as he was finisihing our Attedning came in. The two of them started a conversation which was extremely interesting. They both had valid points for their point of view and I agreed with mostly everythinig each of them said. I really felt like they were both committed to helping Aaron and having the back and forth discussion was heartening to know that they were truly trying to figure out a solution together. In the end surgery was called for a consult but they agreed to hold off on anything until he is less edemedas. I was fine with that. They also discussed removal of the antibiotics as early as tomorrow night but want to wait and see how things go and see what the test results look like.

In the end Dr. Barnhart (Sam's surgeon) wasn't able to come as he was stuck doing another appendectomy (go figure) so one of his residents came. He did his thing and eventually came over and started to ask me questions about what had happened with Aaron. At one point he asked if I was a nurse, I laughed out loud and told him no but that I have learned a great deal in the last 3 months.

So as of right now Aaron's urine output has improved. Still not to where we want it but enough to start making a slight improvement. At this point he has lost 280 cc's of fluid from where he was tapped today, (its been a bit leaky to say the least!). The hole where the needle went in is still open as all the fluid is now trying to rush out. Unfortunately leaking too much fluid is a problem as we now need to watch his electrolyte levels. We would much rather have him pee the fluid off. His blood pressure is high so we need to keep that under control. We think its pain related so we are trying to find the right thing. He was changed from morphinie to a fentinol drip in hopes that will work better.

Its been a long day and will be another long night and there will most likely be several more long days ahead. Today though we are relieved these big changes have gone smoothly and are crossing our fingers and saying our prayers that they continue to do so.

It Weighs Heavy....

Three posts in one day, a little nuts but we've had a lot going on. When I arrived at the hospital today the Infectious Disease Attending was waiting for me outside Aaron's room. He presented Aaron's case to the rest of the I.D. Attendings and asked for suggestions. They have decided to change another medication to something different and to call in General Surgery for a consult. He really feels at this point Aaron has a perforated bowel or an infectious abscess that will need to be surgically drained. Surgery for him is not an option until he starts to get better, however but he wanted the consult to see what they had to say. Their hope is that these new drugs will help him improve enough to where he could survive abdominal surgery. The ultrasound was done today and we are still waiting on the results although everyone seems to have a consensus that ultrasound will not pick up what we want it too, that the ct scan is really what he needs.

Today was also Aaron's care conference with the out going Neonatologist. It was not the kind of meeting I had envisioned and I certainly didn't leave with a clear understanding of what the next few days will hold so I'm not sure yet how I feel about it.

The doctor started by explaining in detail a condition called BPD and what pulmonary hypertension is. He then spelled out the survival rates of both and what they are together. Then he told us Aaron had BPD, the hypertension we already knew. We also talked about Aaron's current condition, the severity of it, and our options. What it boils down to is this: Aaron is once again on the fence. With the new drug changes he still has a chance. This doctor has given him a week to show signs of improvement. If he does not improve in a week he most likely will not improve and we will have to make the decision how long we will sustain him on life support.

Assuming Aaron does improve over the next week, his long term survival is mediocre at best. With both BPD and hypertension, surviving to 6 months is about 65% and then to age 2 is 20-50% of those who survived and then to age 3 another 50% of those who survived. With all the medication he is receiving, withholding his feeds and being calorie restricted, and the time he was at low O2 stats this last week for so long also factor in to what kind of quality of life he will have if he does make it long enough to come home. We are no strangers to statistical data and what that involves, nor are we strangers to overcoming those odds, yet the reality still weighs heavy on us.

After the meeting I was able to stand by Aaron's bedside for just a few minutes before needing to leave to pick up the boys. His body, and face especially, are significantly bigger than even yesterday. His skin has started to crack and bleed in several places which we were hoping to avoid. His edema no longer allows him to open his eyes. They have now maxed him out on blood transfusions as his CRT is 57 and they didn't want it over 55. His urine has picked up and is averaging over 2 but we really need it up somewhere between 6 and 10. We pray these medications work and work quickly.

Edema to the Extreme

I originally was not going to post this but now that our kids have seen him and now that really he is even bigger I decided to post it. This is a picture of Aaron about a week and a half ago. Since this was taken he has added another pound of fluid under that already taught skin. The diapers do not fit around his belly and depending on the day you may or may not see a belly button or even his eyes open. When we rotate him one side of his face will get the majority of the fluid and he won't be able to open that eye but will try to get the other open. He still responds when we are there talking to him which tells us he is still fighting to be here. What a will to live this little one has. He truly inspires me to get through each day!

Infectious Disease

After dropping Ben off at school I headed up for my hour of time with Aaron. Unfortunately I didn't get much time to spend with him because I was talking with doctors, n.p.'s, and nurses the entire time. Aaron had an echo yesterday and the results were predominantly left to right shunting and small to moderate PDA. They did not mention anything about his paracardial infusion or his VSD or anything about his hypertension so I assume they are not an issue at this time.

Just after I got there and spoke with the n.p. a resident from Infectious Disease from Primary's came to see me. She wanted another history of the fam (did this twice already) and then she examined Aaron and then said she would be back shortly with the Attending. 15 minutes later they came back with 2 more (4 total). I spoke with the I.D. Attending who agrees with the cardio guys that Aaron certainly has an infection or virus of some kind. He thinks its in his abdomen somewhere and wants a ct scan. A ct scan would mean a transfer to Primary's and contrast. Two things Aaron can not do at this time in his current state. So an ultrasound was ordered instead, both of his gut and his head which will be done this morning. He is also testing for CMV a virus common in IUGR babies although he doesn't think that is what he has. We talked about all the septic work ups Aaron has had and agreed with me that most likely Aaron has been sick for a lot longer than we had originally thought and that all those times he started and stopped antibiotics was just masking the problem and making thins worse. He changed one of his medications to one that focuses on his gut and recommended that we do not stop treatment at the 21 day mark that was originally planned. After all that he asked if I had any questions and then said he or someone from ID would be over to check on Aaron everyday until he was better. Love it, didn't even have to ask this time!

Today is our care conference with the staff in preparation for the Attending change tomorrow. The nurses and I were joking about how to safeguard Aaron's flolan so no one is tempted to stop it. We have 3 official primary nurses and about 4 more that are regulars as well (they would be our primaries too if we were allowed to have more but they get around that by requesting him). We know at least one will be at the conference if not more as they have said they want to be there too. We really do appreciate all they do for Aaron and for the care and love they give him. I know he is well cared for while I'm not there.

Ronny went in last night to read to him. I stayed home to help with math homework and get the kids to bed. Aaron is very sick but seems to be doing a little better. His chest films are looking better. They have turned his mean down and his hertz up on his respirator and he is tolerating his "cares" so much better these days. He has received a lot of blood in the last couple days so he is very pink. It seems that getting blood helps his kidneys profuse better and we get more urine in his diaper and out his catheter, still not enough, but better none the less.

Kidney Function

Aaron's nurse noticed yesterday that he was having a hard time keeping his core temperature up. She looked in on him and noticed that his sheets were wet. She called in the nurse practitioner and together they changed his sheets. While doing so they also weighed him. Aaron's current weight is approximately 2500 grams. This puts him just over 5 1/2 lbs. Unfortunately that is not such good news. In the process of changing the sheets and weighing him they realized the sheets were wet because his skin has started to weep. Aaron's reference weight is somewhere around 1500 grams although they are using 2000 grams to figure his prescriptions to make sure he is getting enough medicine. He is carrying at least 2 lbs of fluid under his skin. This has made his skin very taught and extremely painful. They have tried a few different ideas to help him flush this fluid but they don't seem to be working, certainly not the way they want it too. This tells us his kidneys and capillaries are not functioning properly.

The doctor tells us he is pretty sure these events have stemmed from some kind of infection although they don't know what kind. They have decided to keep his antibiotics on board for 21 days. I think that will be up on Thursday. Infectious Disease has been called in once again for any ideas. This week's Attending has told us treating Aaron is much like a series of Trial and Error. I feel like we have been doing the same trial and error way too much lately as we seem to be doing the same things and only having errors and no successes. Aaron has another echo on Tuesday to make sure his hypertension and heart continue to be stable. This Attending goes off rotation on Wednesday. They have called another Care Conference to square away the plan of action before he leaves and the new one takes over.

I spoke with the nurse practitioner about what was going on and some of our frustration with the "Attending Shuffle" we now refer to. We have been here long enough to have gotten to know most of them and how they are differ in opinions and personalities. Like the nurses we have our favorites. Hopefully one of them will think up a solution. That is our prayer today.

Kindergarten, Diapers, and Ward Fast

Benjamin started Kindergarten this week. His first day of school we walked over together. We entered the play area and waited for the teachers to come outside to blow the whistle. I looked around and saw many children playing, some standing on the outside of the equipment to shy to jump right in, and others clinging to their parents legs not wanting to separate. Then I look over to see Ben pounding on the door and begging to be let in because surely it was time to start! Each morning after the big boys head off he recites the time on the clock to me every 2 minutes wanting to know how much longer he has to wait to head to school. I wonder how long this will last.

Ben is in the afternoon session which makes my daily visits tricky and way too short. During the week I drop Ben off at school and head straight to the hospital. I am only able to spend about an hour before I need to head back down to pick them up at school. Today I read to Aaron, changed his diaper, and helped readjust his position. He is not a big fan of the repositioning. He opened he eyes up, gave us the evil eye, stuck his tongue out, and then de-stated and shunted. I don't mind the "look" or the tongue, but the de-stats and shunting I mind! He usually comes right back down within 15-20 minutes but I would rather we didn't have to turn him up to 100% on his O2. Before leaving I had a quiet talk with Aaron. I told him how important it was for him to pee. His body is so stretched and full of fluid it hurts to think of how much he is suffering inside.

Our ward Relief Society secretary sent an email out this week that mentioned the ward was asking members to fast for Aaron and another young man with cancer this coming Sunday. I was very touched. I mention this so that those who wish to, can join with us.

Another Turn

Just as we were starting the bed time routine last night a call came in from the hospital telling us we needed to come right away. We called my mom and left within in minutes. When we arrived we found Aaron blue and thought we had lost him. He still had a heartbeat put his oxygen stats were in the 50's with 100% O2. It took about 6 hours and the start of two of the drugs he had been weaned off of to get him somewhat stable again. He had another echo last night that told us his hypertension was back. We stayed all through the night once again just in case. My mother took our kids back to her house and got them ready for school this morning. Today is Ben's first day of kindergarten.

Ronny and I stayed through rounds today. We were pretty frustrated that he had been weaned so quickly once again and we told the Attending that. The Attending said there should be a sign placed on his bed not to wean him off his pht drugs no matter what the echo says. (Funny, I thought we had established that already, yet here we are again!) At the end of rounds the Attending turned to Ronny and I and told us that there were two kinds of kids with hypertension, ones that will clamp down and recover quickly after just one round of medication and the other set who don't seem to get better after repeated treatments and they tend to be more critical when they clamp down. Obviously Aaron fits into the second category. He says that sometimes these kids don't ever get better and don't ever go home, but they haven't given up on Aaron yet. I told him that if we could just get him over whatever is making him sick and get this edema off him I think Aaron would do so much better and likely recover after a ligation from the hypertension. I told him though that until that time comes not to take him off the meds!

This roller-coaster ride seems to only have loop-di-loops at the moment. We are all getting dizzy. I worry about what this is doing to my big kids. Ronny and I pray each night for the Lord to watch over them and guide us as parents to help them through this journey of ours.

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Best Phone Call Ever!!!

This week's puppy photo. Aaron's appearance is rather shocking at the moment. I am afraid that if our kids were to see him right now it would scare them and possibly give them nightmares. This is the bank of pumps giving Aaron all the medications he needed to get through this weekend. Two of the pumps are off at the moment and one had already been taken away. At one point he had 11 pumps running at the same time and 6 lines going into him. This picture has already given me nightmares!

First day of school 2011. Can you see how excited Joseph is to start school again!

This is a photo of Aaron last week before he was re-intubated. You can see his face had already begun to swell at this point. His face and body are about 4 times the size he is in this picture.

I headed up to check on Aaron this morning to find 8 different people in his room. I turned around and realized 4 more had filed in behind me. Its hard not to get nervous when that many people are in your son's room at the hospital. 2 of the people were in readjusting one of Aaron's pic lines. One was his nurse for the day, one was the Attending, another the pharmacist, respiratory therapist, fellow, and nurse practitioner. The 4 who followed me in were cardiologists from Primary's. Yes 4 of them! (I wondered if they were all here, who was left over at the other hospital???) Even with Aaron being the only baby in the room it was a bit crowded! They were right in the middle of rounds when I arrived so the n.p. quickly caught me up.

Aaron had an echo early this morning, they discontinued the dopamine, had plans to wean him down on two more of his heart and lung meds depending on good echo results, give a transfusion, and give more lasiks to try to flush more of his fluid out.

After rounds were over most of the people left and Aaron's n.p., nurse, me, and the cardio team remained. The Cardio Attending came right over introduced himself, shook my hand, and expressed his sympathy over Aaron's illness. I about fell over in shock! This guy was great! He spoke to me directly, asked me questions, gave me his recommendations and said he would continue to follow up through out the day as the echo results came in. Two of the fellows he brought with him also examined Aaron and asked me a few questions. When they excused themselves I looked over at Aaron's nurse and he shrugged his shoulders and said, "Well, you don't see that every day!"

After things settled down I read to Aaron. I have been reading him Treasure Island these last few weeks. Today we finished the book. At one point I looked up to see Dr. Yost the Attending who was on over the weekend. He had come in to check on how things were going and see what the plans for today were. I said hello and he asked how we were doing. When he left Aaron's nurse said he was amazed at the attention Aaron was getting. I asked him what he meant by that. He said Dr. Yost had actually been in 3 times that morning to see how things were going, Dr. Yoder the head of the department had been in, every n.p. who was on came to see him, every o.t., and every nurse who had ever had him that was on today had come to see him as well. He also said there were several nurses requesting to have his assignment. I laughed (laughing is better than crying!) and said his rock star status may just go to his head. He said "rock star" was absolutely the right term for him and that anyone who has been near him has been touched by his little spirit. He also said that if Aaron continues to improve he would most likely get a neighbor tomorrow. I told him we were happy not to be "critical" anymore and that "stable" was a great place to be today!

This afternoon a phone call came in from the U. I couldn't help but cringe and take a deep breath. Aaron's n.p. was calling with his echo results. His echo showed that his pulmonary hypertension was no longer present, his PDA was down graded to moderate, he had only left to right flow, his VSD was diminishing, and the function on both sides of his heart looked normal. I was shocked and said she could not have called with better news! The plan to wean him off two of his meds had already started and so far he was tolerating them really well. His FIO2 was down to 25! Unbelievable!