Friday, September 30, 2011

Flowers and Donations in Memory of Our Sweet Aaron

Many of you sweet friends and family have been calling and asking about sending flowers or donations. If you would like to send flowers you can send them to Broomhead Funeral Home 12590 South 2200 West, Riverton UT, 84065. If you would prefer to make a donation in memory of Aaron you can do so at the March of Dimes, ( scroll to the bottom and click on the "Give" box. This wonderful organization provides funding for countless services in the NICU where Aaron lived and many more NICU's across the country.

Thursday, September 29, 2011

Final Arrangements

For those wishing to attend we will be holding a funeral service for our sweet boy Monday, October 3, 2011 at 11:00 am at the Daybreak LDS Stake Center at 4517 Mille Lacs Dr., South Jordan, UT 84095. A public viewing will be held 1 hour prior to the service in the Relief Society Room. Aaron will be laid to rest in the South Jordan City Cemetery directly following the service.

Saying Goodbye......

Aaron Thomas Bjarnason
May 16, 2011 - September 28, 2011

"For the eternal purposes of the Lord shall roll on, until all the promises shall be fulfilled."
Mormon 8:22

Wednesday, September 28, 2011


Today has been another day of waiting on the cardiologists. They still have not "gotten back to us". We have two n.p.'s today, one called and did a great job of spelling out exactly what our concerns, questions, and frustrations are. Both have called repeatedly to see if they were even going to come over today.

I had a great conversation with many of the staff we have come to know and love, our nurses, our n.p.'s, our March of Dimes and Parent to Parent coordinators. I explained that our frustrations of not having the information we need from cardio was delaying our decisions on what direction to take with Aaron's care. We are all on the same page on our side of the bridge, we just can't seem to get those on the other side to understand that those answers are extremely time sensitive and every minute that ticks by is causing an undue burden on Aaron and on all those who take care of him who are anxiously waiting.

Tuesday, September 27, 2011

I know this can be stressful

This morning as soon as the boys were off to school I headed down to pick up my sister who just came home from her mission. She graciously agreed to hold down the fort at home so I could dash up and meet with the cardiologists who said they would come in for Aaron's consult this morning. Morning turned into afternoon. Rounds were late but everyone concluded that cardio needed to be "actively harassed" until they came over. At 1:30 they finally called (after the harassment had begun) and said they would be over sometime in the next 2 hours. They finally came about 2:30ish. Not the Attending we had expected, the one who would be doing Aaron's cath, someone we didn't know. Our nurse even asked him if he was a new fellow. He asked me what I understood about the procedure and what had taken place in the time leading up to them coming. I told him about Aaron's missed appointment date last week and him contracting the parainfluenza bug. I told him we had been in constant contact with the cardio department and had been given requirements for Aaron to be transferred for the cath procedure. I told him that Aaron had met all the requirements and we were ready to be scheduled and taken over.

He examined Aaron as did the fellow he brought, the one who backed out on us yesterday, she apparently didn't want to come by herself. What!?! She then examined Aaron. Then they both looked up his charts for the last several days and weeks. He asked me a few questions here and there and then told me he had reservations about Aaron having this procedure at this time. He said they normally didn't take kids who had the flu within the last 6 weeks because the results may be skewed and that he thought Aaron's vent settings were on the high side. I again told him that from there recommendations Aaron had to have 3 negative cultures from the flu, which came from the lungs I might add and were done over a week ago. He then asked if the doctor who was going to do the procedure knew about the flu and I said yes, his team were the ones who set the requirements.

He then said he didn't think they would do anything now but would have to discuss everything with the other doctor as he would be making the decision. (Why the heck isn't he here then, why are you here????) He told me he would get back to me. I asked him when that would be. He said, tomorrow. I literally bit my tongue from chewing the guy out! Tomorrow, you get that we've been waiting for you for more than 24 hours and you will get back to me. Ahhhhhh! He then looked at me and could tell I was pretty irritated and then said, "I know this can be stressful sometimes." I just about kicked him out of the room at that point. I didn't say a word, I just glared at him. He left quickly after, before my tirade started.

After he left, several of the nurses came in to find out what happened and were just as frustrated as I was. Our sweet nurse today listened to me vent my frustration repeatedly. She was great, she went and told the N.P. that when cardio calls that I wanted to talk to them personally and that we all requested the doctor who was supposed to be here today to actually walk over the bridge and assess Aaron himself before making any judgement calls.

What really gets me is that they don't think that my time or Aaron's time is valuable. I made arrangements for two days straight to meet with them and they put Aaron off again. I know they are busy which is why when they say they will come I set aside a large block of time but when they do stuff like this I feel like sending them a bill for my time they have wasted! There are quite a few issues that need to be addressed with Aaron's care and this is the one that needs to be checked off right now. We can not wait 6 weeks for this 6 weeks is a lifetime to Aaron. We are hoping this procedure gives us the information we need to make the big decision on what to do for Aaron, keep going or allow him to return to heaven. Liver and bones don't make a difference if the heart and lungs can't function on their own and this procedure will begin to unravel that information.

Mad Mommy!

Yesterday did not go so well for us. Aaron's first echo had some glitches and needed to be redone so when I walked in at noon that was just getting underway. The results of that one were what we wanted, left to right shunting and moderate PDA. So, Aaron met the requirements to go to the cath lab. The call was made to Cardio to come and get the ball rolling. The resident said she would be there in the afternoon to make the initial assessment. (The procedure is a resident comes over, then the fellow comes over, then all 3 come over, its time consuming and frustrating to say the least!) At 4:30 the resident calls back and says that instead of coming over then she'll come by tomorrow then talk to the Attending and then make the plan for transfer.

To say I was frustrated is an understatement, irate would be a better word. Our N.P. had told her I was there waiting and that I had to make special arrangements for child care at home. We have had pretty much every consult you can have and no other specialty pulls this on us. There is no reason why one of the residents could not have come over and made the initial assessment yesterday. There are several of them as 6 of them have been in Aaron's room before at one time. This would not happen to one of their clinic patients, this would not have happened if Aaron was across the bridge.

We have had this problem before and I asked the Attending how to get them to come over when we needed them and he said, "just call us, we'll come". Obviously that is not the case. So today when they decide to mosey on over that bridge and they ask me what else they can do for me, I'm going to Spell It Out for them! Today you get Mad Mommy!

Monday, September 26, 2011

Heaven is Near

Aaron's initial viral panel came back positive for staph and positive for a gram negative coxi (sp?) yet to be determined. The staph they believe is in his trachea and for now will not be treated. The coxi will hopefully be identified sometime today and they will decide what to do about it then, they are thinking they will most likely give oral antibiotics for that. From the pictures you can see that Aaron's belly is quite distended, mostly from an enlarged liver. Aaron's direct billiruben is very high and his skin is very yellow. Between the prolonged doses of heavy antibiotics in the last 2 months and multiple sepsis episodes his little liver is having a hard time keeping up and is getting backed up. If it fails, the only way to fix things is most likely a transplant, something Aaron may not even be a candidate for at his current age and size.

This week will most likely be the longest week yet, and that is saying something! Aaron will have an extensive echo this morning which will be sent directly to cardio. If he "passes", all left to right shunting, they will schedule him for transport and for his heart cath. We are anticipating that to happen on Tuesday but will know hopefully by the end of the day when everything will play out, the sooner the better at this point.

Ronny and I know that this week is going to be rough and we will need to be at the hospital quite a bit. Sleep has become elusive for me now, I know I need to rest but my body just won't allow it. The kids go back to school this morning. I know this week is going to be difficult for them as well. This is the time I most wish I could split myself in two so that I can be in both places taking care of all my children's needs. We'll just have to figure things out as we go.

Standing in Aaron's room these last couple days I can feel that Heaven is very near. So many times Aaron has stood on the threshold of both Heaven and Earth and weighed his options. We are there yet again. In these next few hours and days we will most likely know which side Aaron has chosen. Things may change rather quickly in the upcoming days so I will most likely not be able to update the blog as quickly as everyone wants, I will do my best as time allows. With all the stress and uncertainty that lies ahead its hard to wrap our heads around the idea it will become more chaotic than what we have done thus far, yet both Ronny and I feel a sense of peace that all will be well. Forward we roll.........

Saturday, September 24, 2011

Tube Change

Today's tube change was successful. After it was completed I found out they did not give him any extra sedation drugs which really surprised me. After the change took place they also switched him back to the oscillator vent in preparation for the transfer to Primary's. It took him two hours and a few tweaks on the settings to finally get him to saturate in the 90's. His CO2 level at one point was 148, it should be in the 40's and 50's although we don't freak out too much until its in the 70's these days. Even on the new vent he is requiring at least 60% oxygen on his FIO2.

The plan now is to figure out what settings on this vent will keep him the most stable. On Monday he will have another echo done and if that is still left to right the tentative plan is to transfer him to Primary's on Tuesday to the CATH lab. The general consensus is that the current status quo is not getting Aaron anywhere other than backwards so although he is not where we would like him to be, we need to press on.

Aaron's liver has significantly increased in size and we are very worried it has started to shut down. Until we know for sure we again are moving forward and will deal with that when we have to. Another concern is that we are not sure he will be able to tolerate the heart cath but again, we are moving forward. Our last concern and probably biggest concern is that Aaron's chronic pulmonary hypertension may now be primary pulmonary hypertension. If that is the case then we will have to make the decision when to stop life support as he will not be able to recover from that. We will know more when he goes to the cath lab, until then Forward We Go....

Risky Business

Aaron has not been doing so good these last couple days. His oxygen needs have gone up and yesterday two small air pockets (neumo's) were found outside his lungs on his chest films. Normally a chest tube would be inserted to release them but Aaron wouldn't be able to handle that at the moment. His oxygen needs have increased and he is having trouble with his CO2 numbers. He has an air leak in his vent tube and one of his cultures had another positive for staph colonization although they can not confirm it with his current tube. The plan today is to change out his tube and put a bigger one in. The last time his tube was changed he did pretty well but he was significantly more stable. We are not sure if he will be able to handle the change today and from what it sounds like they are going to also try to put him on a vent that will allow him to be transferred over to Primary's today. Today is going to be a long day.

Thursday, September 22, 2011

Are You Really Asking Me That???

Aaron's weight shot up again last night 230 grams. His belly is once again significantly extended. Rounds today were somber and frustrating. It felt as if the doctor and nurse practitioner had given up and were just biding their time. Aaron seems to be able to be consoled better today and comes down quicker from "cares". When I left today he was at 44 on his FIO2.

While standing next to Aaron and talking softly to him today's nurse came over and wanted to hold his hand as well. She started to ask me questions that included, "Have you ever taken care of a handicap patient, Have you had to deal with lots of crisis in your life?, Have you had to deal with a close family member passing away before?" At one point she said, "Well instead of having to make the decision to stop life support he may just go on his own." After all that she asked, "Have you had a chance to laugh about something Aaron has done?". I was so shocked I could barely talk. I just wanted to scream "Get Away, this is my time with my son and I do not want to share it with someone who asks these questions!"

Throughout the months of July and August when Aaron was so close to the edge I never felt the despair that I felt in his room today. I was so frustrated, I could hardly speak! I'm always asked in rounds if I have any questions. I so wanted to ask them to have a better attitude. If I wasn't so close to loosing my cool I would have. I know Aaron is once again close to that edge but time and time again he has decided to keep playing this crazy game of life. I don't know that this time is different but I'm sure not giving up on him now!

One a much happier note, my sister comes home from her mission tonight. We are so excited to see her after 18 months. I have not been the best letter writer as our life has had other priorities but we have prayed for her every day and night while she has been gone. She has done a great job as a missionary and is certainly returning with honor! Hooray Michelle!

Wednesday, September 21, 2011

Bark Bark Bark.......Dad!

At 4 a.m we heard the first of the barking cough coming from Joseph's room and shortly after we heard the call for help. NICE! Joseph had his trip to the steamy shower and the humidifier brought back in his room. He slept well after that considering his nasty cough. This also meant a trip to the doctor's office this morning. Joseph's pulse ox was only reading in the low 90's which tells us his asthma which was doing so well before has taken a good hit. He may need to go back on those medications. The doctor examined him and thinks he most likely has the same parainfluenza as Aaron. His lungs sound decent so he was given a dose of steroids for today and one more for tomorrow. Hopefully that will clear everything up. Unfortunately we don't know for sure if its the same strain so we are deciding what to do about going to see Aaron. The thought of not seeing him everyday especially when he is sick is almost too much to think about but we don't want to introduce anything else to him either. Ahhhhhh, we could really use a break here don't you think?!

Tuesday, September 20, 2011

Day 128

Today Aaron's chest films showed his right lobe is recruiting once again. He is more tolerant during cares and has started to recover quicker when we finish. He still has quite a bit of secretions and mucus that we suction out and is now coughing up into is mouth as he now has an air leak. One of his vents (he is on two, Jet and conventionial) settings were weaned by 1 today. He received blood on Sunday so his CRT is much higher at 49. He had multiple labs run this morning. His liver numbers are significantly elevated which is concerning. This may be the start of liver failure and something that will be monitored more closely now. The Attending is cocncerned Aaron is out growing his body. I don't really know what to say to that, other than shrug my shoulders. Just add that to the list I guess.

On a good note the big kids visited the dentist today. No cavities!!! Happy day there as I did not want to return with all the construction chaos in the area of the dentist's office! Today the kids are visiting Discovery Gateway. They have had so many adventures in the last week its hard to keep up. Nana took Joseph's county report seriously and they have been all over Utah County, and I mean all over it! He will have a hard time weaning the pictures down, apparently they are picking up 75 of them today at Costco. Yesterday Joseph and Sam went shoe shopping for church shoes and tennis shoes so that can officially be checked off the things to do list. Our kids were asked to sing a song for the upcoming Primary Sacrament Meeting Program in October. We are somewhat of a musically challenged family so we have lots of practicing ahead of us. That will most likely fill our Family Night agendas each week up until the program. The bishop called this week and reminded us that Sam's baptism is coming up. We'll need to get on that soon.

Sunday, September 18, 2011

Benefit of the Doubt

This has been as especially hard week for Ronny and I in the NICU. Aaron turned 4 months old this week. He is day 125 I think. Aaron had some ups and downs this week. One of those 2 steps forward 1 step back weeks. In the midst of the step back part some unfortunate things happened that were hard to explain initially. Unfortunately in reports that were made, some miscommunications and misunderstandings were relayed. Fingers started getting pointed and they landed for the most part on Ronny and my shoulders. Within a day or two of these reports the real cause for the problems surfaced, one a machine malfunction that was fixed and the other a realization that what was thought to be reported never really happened. Before those remedies were made the brunt of things were dropped in our laps.

In one of the cases in the midst of all that happened some tempers flared, some things were said that shouldn't have been said, especially in front of myself and my son. I was familiar with the person and knew that this particular person was having a pretty hard day, so I dismissed the fit and gave them the benefit of the doubt. In the other circumstance Ronny did the same with the person who had been in the room during the problem he was present for. He was pretty shaken when he came home so I sent him out on a run to work it out. In both cases I was the one to take the heat the following day. What frustrates me is that the fingers started pointing before anything was first confirmed and that those fingers were directed towards us, the parents.

As any parent would confirm, to have someone report that something you did or were a part of would cause harm to their child stings pretty sore. I don't have to tell anyone how stressful our lives are at the moment or how overwhelmed we are. With all that is going on we are very sensitive, its something we surely are aware of and something we do our best to deal with and help each other constantly. I know EVERY parent in the NICU feels the same way. To have something directed toward the parent with or without confirmation is troubling in such a setting, especially one that is so overwhelming to begin with. We have felt our stress level multiply these last few days over things that never should have happened and its unfortunate. I pray others don't have to go through this and hope that benefit of the doubt is extended in both directions from this point on.

This situation has kept me up at night and churned in my head and my heart for a few days now. I debated whether or not to include it and my feelings here on our blog. In the end I realized just venting it out would help me but also I feel like maybe it will benefit someone else out there and felt impressed to include it. A few years back I read an article in our church magazine about charity. In it the article relates that sometimes the best form of charity is to give someone the benefit of the doubt. That has stuck with me over the years, its something I've tried to apply in my life, something I am still striving to be better at, something I am trying to do right now. Emotions seem to get in the way all too often and I am trying to take a moment to pause and breathe before I react.

I did address this issue yesterday and the day before and tried to leave as much emotion out of it as possible. In the end the Attending did come in and apologized yesterday, I appreciated that. In that same conversation she asked the dreaded "when should we stop care" question which of course just made everything 10 times worse. It seems that each Attending feels the need to ask us this question. Ronny and I discuss our options, our feelings, and our concerns about Aaron and his care daily. We make our decisions together and with prayer and as each problem arises with Aaron we ask ourselves that ever dreaded question. Its an all too familiar conversation that leaves us emotionally drained but one that has to be done. Each time we discuss it and each time we are asked by the staff it gets more difficult to answer, not because our answer has changed that much but because to say the words out loud almost feels like we are giving away some of our faith and hope. In the end after each of these conversations we find ourselves on our knees begging for peace and strength and each time the Lord has been there to pick up our broken hearts, put us back together, and give us the strength we need to get through one more day.

Friday, September 16, 2011

Another Setback

Right as I finished my post this morning one of those not so great phone calls came in. In the early hours this morning Aaron's right lobe collapsed. This in turn set off his pulmonary hypertension and when the NNP listened to him his heart had a "gallop" to it also indicating pht issues from what I am told.

I grabbed my purse and Ronny dropped me off at the TRAX station on the way to work. Unfortunately TRAX didn't get the message I was in a hurry to get to the hospital as the train malfunctioned and after limping into a station we were told to board the first two trains so they could separate off the one having trouble. Needless to say it took longer than the hour it was supposed to.

When I arrived I noticed the vent settings had been turned up, not as high as I was expecting, but up. His FIO2 was at 40 and within a short time was turned down to 36. After doing cares, having an echo, and taking a trach culture he was back up to 50 but has come down again.

Rounds start about 12:30. Yesterday the Attending did rounds outside our room and didn't include me. This is the first time an Attending has excluded me from rounds when I have been here. I was pretty irritated with that as that is why I make arrangements to come in the morning. I think she sensed that so today they came in the room for rounds. When they were done with the numbers and basically saying they were going to wait to change things until after they get the echo results she turned to me and told me she was concerned they couldn't wean the nitric off or change him back to the other vent. I told her that I felt we went a little fast with things the last day or two and after hearing what happened with Aaron's lungs that he was not yet over the flu and pnuemonia. She said most kids get over that in 3-5 days. What!?! I have yet to hear of someone gettinig over pnuemonia in 3-5 days let alone a baby 4 lbs! After heariing what happened I was not surprised that he needed to go back up on the nitric when his lung collapsed as trauma always sends his hypertension into a tizzy. I got the feeling like she wants him to be farther along and doing better than he is. Don't we all! So my question is this, are you concerned because he's not following your timeframe or are you concerned about getting him to the CATH lab by next week, or should we be concerned that Aaron is still fighting the flu?

Here's my thoughts on the matter. Aaron is on his own timeframe, have we not figured that out yet??? This Attending is the first to think that he should be better by now as the last Attending told us when he was first sick it would take a while as well as all the NNP's we've had. So its been two weeks tomorrow since he got sick. Sick with both pnuemonia from the flu, and a staph infection. Cut the kid some slack for heaven's sake! If we don't make it to the CATH lab next week than we will go later. I would rather he go when he is ready, not when we think he should be ready.

There were some other issues during rounds today that I was pretty ticked off about. I need to calm down before I say more about it though. Usually I have a good idea of how things are going to play out during the day when rounds are finished. Today I felt like I have more questions and concerns than answers. Hopefully the echo will answer some of them. For now we watch and wait. Something we are certainly no stangers too.

Another Day of Tests, Can We Go Fishing???

This is what I saw when I arrived to see Aaron yesterday. He had a little tent over him and was one happy little guy snuggled on his tummy. The little marks on his heels are where they draw the multitude of labs each day.
Aaron seems to be feeling better. He is awake more often and for longer periods of time. With his bed open he doesn't have much to look at so his nurse yesterday made him a little mobile out of toys and found a great blanket that hung from the top of his isolette with a suction cup and rubber bands. I tell you these nurses are very creative and inventive! He woke up later and just stared at his new toys!

Aaron had a pretty good day. They continued to wean his nitric and when his Primary nurse came in last night he got right in line and had the best sats and numbers for the day. His weight was 2560 so the weight gain is slowing down and his belly was 1/2 cm less last night. As they wean the vent settings his kidneys start to pick up better. The other day Aaron got a hold of the catheter tubing with his toes and yanked his cath right out. I wasn't too surprised to hear about this as he tends to find these tubes and pull whenever he gets a chance. For now they have left it out.

Today Aaron has a chest film, viral panels, and another echo ordered. His nitric will be off by noon and the echo this afternoon. If his blood gasses continue to be low they will continue to wean his jet vent and possibly move him back to the Drager sometime in the near future. They are doing all they can to get him ready for the CATH lab. I think the big hold up may be the viral panels. He has to have 3 negative cultures before he can be transported and each culture takes 24 hours to come back.

When Ronny and I got home last night Nana filled us in on the days events. They boys have discovered fishing on their terms it seems. They take their bug nets and some bread to the park. Joseph lays himself way over the dock and drops bread on the surface of the water. Then he waits very patiently until a fish comes to eat it and snatches him up in his net. Apparently he is very successful and is the star at the park. They brought a bowl with them last time and everyone had to touch the fish (YUCK!). I will have to get the pictures from Nana. Oh the adventures they have had this week! Charley and Ben made a trip to Gardener Village while the big boys played at a friends house. Charley also had a babysitting job that was not her brothers for the first time in quite a while, she was very excited! They were all very tired kids when we came home. Those are the best days!

Tuesday, September 13, 2011

When He's Stable.....

This morning the kids and I headed to the airport to pick up Nana! I think its a toss up who is more excited for Nana to come these days between me and the kids. For the kids it means time with her on new adventures and for me its the fact that I can go to the hospital and not have any worries the kids are missing me. We arrived to find Nana's plane delayed (we knew before we left but it was later than we had expected.) The plan was to go home and for me to take Trax up but after 30 minutes in the parking lot and having to repeatedly tell the boys to stop shooting spit balls at each other, I was ready to go to the hospital where it would be quiet! Yes I knew I would be throwing Nana into the lions den but they certainly behave better for her these days than me so I wasn't feeling too bad.

I arrived in time for cares. Dr. Beachy's first comment was "I was so tickled to see his chest film look so much better this morning!" At which point I asked her to share the joy with me and fill me in. Aaron's lungs are opening back up and his oxygen needs are decreasing. His vent settings are being turned down fairly regularly. His staph infection looks to be cleared up and now we are waiting for the flu to run its course.

Assuming his flu and pneumonia are getting better we now need to prepare him for his visit to the CATH lab. We don't think he'll be able to make his original date of the 22nd but hopefully it won't be too much later than that. It was decided that we would need to call over to Primary's and get their recommendations on at what point they would accept him. They received the news later this afternoon that he needed to be stable. Hmmmmm stable. Stable for normal kiddos or stable on Aaron's standards??? Could you quantify that just a little bit more please??? We also needed to know how many negative cultures he would need before being accepted. We are still waiting to hear on that front. We would like him to be off the jet and back on the Drager, off his nitric, and being weaned off the flolan before sending him over as that would give us better results, so we will see how far we are willing to go before he heads over. Hopefully he'll be off the jet in the next few days. He gets puffier while on the Jet so my feeling is the sooner the better on that end.

Aaron had a good day today. We were able to suction really thick mucus out of his lungs today. It wasn't discolored and the blood isn't there anymore. We are hoping his lungs are on the mend and his breathing becomes easier. I think being able to eat through this mess has helped give him the energy he needs to fight this off. He remains in isolation but we now only have to wear gloves, no more masks or gowns. Hooray!

Monday, September 12, 2011

New Beginnings and Isolation

Last Night our church ward had their New Beginnings Program. For those of you who are unfamiliar with this let me explain. At the age of 12 all boys and girls enter the youth program, for the girls its called the Young Women. New Beginnings is a night that they welcome in the incoming girls, there are a few more things that take place but as far as it relates to us right now, that's the purpose. Its usually held at the beginning of the year but Charley was the only girl her age coming in and our ward was split earlier so this is when it was held. I was asked to give a 2 minute introduction on Charley which I of course cried all the way through. (That's what you get when you have an over tired, emotionally drained Mom who has to accept her little girl is not so little anymore!) It was a very sweet night and very good program! Charley is counting down the days before she turns 12.

During the program the hospital called our cell phones. Earlier in the day a viral culture was done on Aaron's lung secretions. Everyone thought this had already been done but it was realized that panel was missed and so they did it yesterday. They got a positive result on Influenza Type 3. Yes, essentially the flu! This is not the flu that we get shots for but it is the flu that causes pneumonia. It is rare to have it in the NICU, and as its rare Aaron must have it as that is the way we play here! Because its viral there isn't really much that we can do other than let it run its course. With it being so contagious and because we are in the NICU Aaron is officially in isolation. This means he will not have neighbors and to touch him we must be in gown, mask, and gloves. We also get another visit from infectious disease. Its frustrating to know Aaron has two major issues that are absolutely preventable. Unfortunately we have no idea where either came from, it could have been one of us to bring the germs in, one of the medical staff, or a visitor of our or another baby that we've shared a room with. With either one of these illnesses his date with the CATH lab is uncertain and may need to get pushed back.

Earlier in the day Aaron had an allergic reaction to his vanco antibiotic so that was discontinued. He had 8 days of treatment on it and we hope it was sufficient to kill off his staff infection. His belly has once again started to swell and his urine output has hit the brakes. He is still processing all his feedings so he'll continue to get fed. His IV failed later in the afternoon and after 5 nurses tried they finally got a line in the back of his head. His veins are shot. His merapenum is still needed so surgery will be called in this morning to put in a central line. Depending on who is on for surgery today they may or may not do this procedure at his bedside. If its Sam's surgeon he will, so that is who we are hoping for.

A KUB was also done yesterday to see if there were any blockages of his belly, (there wasn't). In the film you could see a good portion of the lungs. They both looked as if they were opening up and certainly looked better than the last few days. You could see there was still a good amount of junk in them but for the most part looked better. His oxygen needs and CO2 levels have also come down and his vent settings were weaned 3 times yesterday.

Today is going to be another very busy day for our little guy. We hope to get some answers from infectious disease to see how long this may take for Aaron to get over and if we should worry about our other kiddos as they have asthma. We've researched some on our own but still have a list of questions.

Saturday, September 10, 2011

Compare It To A Chess Match

Here are a few pictures of Aaron the last couple days. If you've been following the puppy photos you can see how much he has grown these last two weeks. Lately when Ronny and I are there he really wants to hold our fingers. When he can't find our fingers he goes after his tubes which are not the best choice for him! We try to find him things to hold when we can't hold his hands. He's getting smarter though and can tell when it is us holding his hand or something else we've put into his palm. He does seem to like to hold onto his puppy or duck.

Aaron does not feel good, he lets us know when his pain meds are not enough. He can't cry so he thrashes his arms and legs around and sets all the alarms off. Its hard finding a good sedative for him. It seems his meds are increased both in amount and frequency daily.
With Aaron being back on the Jet ventilator his belly has started to swell up again. Today it seems like we finally found the right settings to keep his lungs opened enough for him to saturate well. His FIO2 is finally back in the 50-60 range and he's maintaining 90's on his pulse ox. These machines are really loud. Today his nitric tank broke down. Getting a new one in and running was quite the juggling act. Making sure all the machines are hooked up and running right is very tedious and usually requires more than 1 or 2 Respiratory Therapists to get it up and going.The problem we are facing with Aaron right now is two fold. We are still trying to figure out what bug is causing the pneumonia and how to kill it. The other is trying to keep his lungs from collapsing and open long enough for us to figure out the first problem. Keeping his lungs open is tricky. As he is rotated the lung that is elevated tends to open up better while the lower tends to collapse and fill with secretions. Trying to get both to open up and get oxygen at the same time is like a battle between two chess champions trying to out think the other; his lungs wanting to close and his team trying to keep them open.

(Aunt Bonnie here is a picture of your Alaska Bear. It sits over Aaron's bed with his duck.)
Today Aaron seemed to finally stabilize some. For the first time in days I felt comfortable leaving and heading home to spend time with the kids and Ronny. We had some friends over to watch the football game and just had a great time with each other. Ronny went up later after the game to spend some time with Aaron while I got the kids settled in the basement for an indoor campout. Today has been the best day of the week.

Friday, September 09, 2011

Sports Camp, Pneumonia, and New Beginnings!

This has been another long week for all of us. This has been the big kids first week off track for the new school year. I found a sports camp type thing through the county at a nearby rec center for them. It was amazingly inexpensive and something I knew the kids would enjoy. They get to play two organized sports in the morning and then after lunch they get to swim everyday. So far the've played dodgeball, hockey, ultimate soccer, kickball, tag, capture the flag, volleyball and one other I believe. They have loved it and its allowed me to be at the hospital. I only wish I had pictures of them participating.

The Young Women's President came over this week to give Charley an invitation to New Beginnings. I was completely beside myself when she said it was this Sunday. I knew the time was quickly approaching when she would turn 12, but now it seems to have come way too fast. She is soooo excited and I am excited for her as well. I don't know that I'm ready for her to pass this new milestone and I feel like I have missed so much time with her these last few months. I was asked to give a 2 minute bio on her and can't seem to put the right words together for that. I am way too weepy as of late.

Aaron's pnuemonia became worse in the last couple days. His left lobe completely collapsed and this morning they told us his x-ray showed his lungs completely whited out. His C02 levels were 92 today. He was changed back over to the Jet ventilator about an hour ago. They say this will help break up the secretions in his lungs and help open up and ventilate the lungs as well. Shrotly after swtiching him over we suctioned him and thick yellow junk came out, so thick it was stuck in the tube. This ventilator is loud and Aaron is extremely sensitive to all stimulus as of late. He was not happy after the switch and took a long time to saturate again. They have taken secretions from his vent tube to culture once again and have changed his medication back to merapenum (sp?). Hopefully that will kill off whatever is in his lungs. Last night Aaron weighed 2090 down another 50 grams. Soon we will want him to gain weight again. Unfortunately its hard to tell when he will hit his true weight.

Yesterday in the late afternoon a brand new baby was moved into our room. I wasn't too concerned with the neighbor until 6 adults followed her in. I found out she was just a brand new arrival and this was the first time her family came to see her. Her twin brother was across the hall. With Aaron being so sensitive to light and sound this became a problem very quickly. I felt bad for the family for getting moved into our room but at the same time I was really annoyed as they wouldn't keep their voices down and I had to ask them to turn the flash off on their camera. It didn't help that they kept going from room to room and opening and closing the door either. Finally one of the N.P.'s went out the the nurses station and pretty much demanded that this baby get moved out. Quite a lot of shuffling had to take place but they eventually moved her out. Aaron is quite the high maintenance kid and we pretty much keep his room dark and as quiet as possible. I can't blame him for wanting it that way, that's what I want when I don't feel good either.

Thank you to those who stepped in and watched and entertained my big kids this week to allow me to stay at the hospital. This has been a dicey week with Aaron's illnesses. I wish I could say he was getting better. I hope I can say that soon.

Wednesday, September 07, 2011

Cardio Returns

Aaron had another chest film today. It showed another slight improvement over yesterday's. Unfortunately, his oxygen needs have been creeping up the last two days. Aaron was having a hard time saturating today and was staying at 100% oxygen. During rounds today our Attending decided to get a cardiac consult. He is concerned that Aaron's large PDA is causing too much of a problem with his lungs. Aaron also had another eye exam today. His eyes aren't much different from last time but the eye doc said he wouldn't need them checked again for 6-8 weeks. I hoping for the 8! He asked where we lived and said he would most likely see us in his office near where we live. I told him I wasn't going to hold my breath that we would see him there.

I decided to stay to speak with the Cardio people. I feel like sometimes things get lost in translation if I solely rely on someone else to fill me in after a consult. After rounds were complete our N.P. called over and requested someone to come over. She spoke with a fellow. She asked if he knew the Bjarnason baby, he said no but asked her to spell the last name. She said, "Sure, its B J". At which point the fellow said, "Wait a second I know exactly who you are taking about, I'll be over in about 20 minutes". And he was! I spoke with him as did our Attending. The Attending feels like they should send him to the CAT Lab (or CAS Lab, something like that). The fellow examined Aaron and said he would be back shortly with the Attending.

About and hour later they both returned. It didn't sound as if they wanted to take him over, especially as he is fighting the staph infection. The Cardiac Attending ordered an extensive echo first thing in the morning. They left shortly after. 20 minutes later our Attending walked back in and said he just received a text that Aaron has been scheduled to be transferred to the Cardiac unit on the 22nd to have a balloon placed in his PDA. This will tell them if ligating his PDA or putting a band around it would help with this Pulmonary Hypertension. He'll be sent to the PICU, the cardiac version of the NICU. They are waiting until the 22nd to give him a chance to kill off the staph before heading over. Once we are transferred there we are not sure if we will be returning to the U. Usually if you have private insurance once you move, you stay, so we will see what happens.

After all the excitement we flipped Aaron over to his belly. He had started to spit up his food again and still had not come down on his oxygen. A few minutes after turning him over he saturated much better and we were finally able to turn the oxygen down. He has been extremely sensitive to noise these last couple days so they moved our little neighbor out today. Hopefully he starts to feel better soon.

Tuesday, September 06, 2011

Positive Culture

For the first time after several rounds of tests, Aaron has a positive culture. Unfortunately its the one positive we prayed we wouldn't hear. Aaron has a staph infection. Two things you never want in a hospital are pneumonia and staph, unfortunately Aaron has both and at the same time. One most likely causing the other. Results have not yet come back on what kind of staph it is, we pray it is not MRSA. With Aaron's history, we wouldn't be surprised if it was. The two cultures that were run yesterday and today will tell us if the antibiotics are the right ones for the job or if they need to be adjusted. The secretions they are suctioning are no longer discolored and his x-ray showed no improvement. It wasn't worse so we'll take that as o.k. today.

Aaron's CRT was 28.5 today. This frustrated me quite a bit. I asked for him to have a transfusion yesterday knowing these labs were coming, they decided to wait. Not too surprised when he was having a hard time saturating today! When I left to pick up the kids today he was finally getting his blood. 30 mls this time, that is a lot! They decided to not stop his feeds during the transfusion so they only had to have 1 PIV in this time, something he already has thankfully. He is not tolerating much of anything right now, being touched, moved, and least of all suctioned. They upped his morphine dose and changed it back to IV form and are scheduling his adavan instead of making it at nurse's preference. Hopefully that will help.

Monday, September 05, 2011

Chest Films

This morning Aaron had another chest film to check on his lungs before rounds. His film this morning didn't show any change from yesterday. During rounds they decided to turn off his flolan completely and to run several more labs. (The nurse let me officially turn it off and gave me the sticker from the IV pump, its a big thing to turn that off!) His CRT this morning before labs was 37, after tomorrows labs I'm sure his CRT will fall significantly so we are anticipating another transfusion tonight and tomorrow. He was put back on full feeds as well. One of the cultures came back positive but showed contamination so it has to be redone. Each one of those cultures requires 5mls of blood, when he gets transfused he gets between 20 and 30 mls so one culture is a significant amount of blood.

Just before rounds Aaron became agitated. We tried to console him but he was having none of it. His saturations dropped into the 50's again and was turned up to 100% on his oxygen. His sats did not improve. The Attending came in and ordered another chest film stat. The film was back just as rounds started. We all went to look at the film and compare it to this morning's. This morning's film showed the entire right upper lobe completely black (collapsed). A larege section of the lower lobe was also black. The film that was run before rounds showed the same with the right side but a smaller section on the left. The doctor turned to me and said, well it looks a little bit better. Pneumonia is going to take quite some time to recover from and if he's not worse today its a good thing and this is even slightly better. This gives us hope.

Sunday, September 04, 2011

Responding To Treatment

We had another long night here in the NICU. Aaron did not saturate well the majority of the night. The right upper lobe has completely colapsed and a large portion in his lower left lobe has colapsed also. After a chest "thump", suction, and 12 hours of antibiotics were in he began to turn a better corner. The remaining portion of lung is responding to treatment and has started to saturate much better. We hope that we have caught this early.

He will be given a chest "thump" followed by suction every 6 hours (morphine will be on board as well). Regular chest films will also be taken to check on his progress. The latest film this morning showed a slight improvement. He will remain on his antibiotics for the next 7-10 days. Right now he is pretty wiped out and is heavily sedated. He is ridinig the vent which allows him to use his energy to fight off the pnuemonia. We hope he has enough spunk left in him to do this.

In rounds this morning they announced he had a urine output of 7.8 yesterday. His edema I would say is aobut 90% gone, he still has some work to do in his trunk area. His blood pressure is elevated and he is receiving meds to keep that down. (mine would be too if I had pnuemonia!). The most likely cause of the pnuemonia is just being on the vent for so long with all that fluid. It just happens.

We pray for continued progress and just plain tenacity on our son's part. Its hard to believe he is sick when we look at him. Compared to what he looked like just a week ago, he looks amazing! Then you see him choke and gag and fight to cough up the junk in his chest and know he is in some serious trouble.

My mother brought the kids up this morning to see their brother. In case things don't turn out as we hope and pray for we want them to have lasting memories of their brother. I was only able to get about 15 minutes of sleep since last night so I am a walking zombie. I plan to go home and get some much needed zzzz's while Ronny watches over our little one. (Ronny pretty much slept most of the night. The alarms every other minute apparently didn't bother him too much). The sacrament was brought into the NICU this morning so we were able to partake. Afterward our Attending stopped us in the hall and told me I could go home now, Aaron would be ok today while I slept. I appreciated that. He was in Aaron's room much of the night as were several other staff. Our wonderful nurse wasn't able to sit down once last night and Aaron was her only patient. When things got dicey they moved out the other baby so we are in our own room once again.

Thank you all so much for your continued prayers and service on behalf of our family. Words can't express how grateful we are for them. I know the Lord watches over us very closely and gives us the strength we need when it is most needed and comfort when we so desperately seek it. I know he gives that to us in many ways, most of which come from you. Thank you.

The Good, The Bad, And The Downright Ugly (pnuemonia)

The Good: Saturday started out fairly well. Kids let us sleep in until 8:00. They worked quickly and got their Saturday chores done before the BYU game. BYU squeaked out a win. I was able to hold Aaron in a chair today for 2 1/2 hours. (This had been the first time since my birthday on July 22). Aaron has been peeing like a champ and most of his edema is gone. Aaron's respiratory therapist happened to be a priesthood holder just when he needed a blessing. Our Attending happens to be pulling a 24 hour shift, right when we needed him.

The Bad: Beavers lost their game to Sacramento State. Aaron's secretions in his lungs turned yellow. He had two fairly bad episodes where he would destat and require 100% oxygen. It would take him at least an hour or more to recover. Aaron started to spit up today and had a hard time stooling. He would flinch when you touched his belly and chest. We wondered if he had a blockage or a belly ache. Aaron had another septic work up done. Aaron's CRT was low so he is getting another transfusion. Its 4 a.m. and I am awake and on the hospital computer.

The Downright Ugly: After a chest film this afternoon our Attending was concerned Aaron may have pnuemonia. Another chest film a few hours later was signifcantly worse and showed that the right upper lobe of his lungs has collapsed, it is attacking with a vengeance. His CRP levels have come back elevated so it looks as though he does have pnuemonia. Words can not describe how serious this is or how scared we are. Aaron coded again this eveninig and it took quite sometime to bring him back. We weren't sure he would come back. His O2 sats were hovering around the 60 range at 100% oxygen ever since. About 20 minutes ago our Attending came back and told us he is putting Aaron back on the Nitric in hopes of allowing his lungs to open up some. The RT also came in and "thumped" his back with a small vibrating device to see if he could break up some of the mucus and suction it out. If these two things don't improve his sats he will be moved back to the oscillating vent. He was also put back on his heavy antibiotics. Our concern for those is that after being on them for a month, they may no longer be affective. The doctor says time will tell if he has it in him to recover. Time is the one thing I have little patience with as of late.

Thursday, September 01, 2011

Hi Dad!

Ronny sent this to my phone tonight. Aaron wide awake during cares! Weight down 30 grams tonight to 2210 grams. That relates to about 4 lbs 14 oz still quite a bit in fluid weight. Our best guess as to his actual weight is about 3 lbs 8 oz., so still lots of fluid to lose. His nurse tonight is officially putting his edema down as moderate instead of severe, an improvement we are thrilled to see!

Echo, UA, and Formula

Aaron had his echo today. He did great! Preliminary results show no change from the time we started to wean the flolan so I am anticipating that being weaned off completely tomorrow pending the final results. His oxygen stats have not improved as of yet, I'm still wondering about his CRT but forgot to bring it up in rounds today so I will have to ask about that later.

Rounds went pretty smoothly. Everything was pretty dependent on the echo so there weren't so many changes. They did talk about having a nephrology consult to see if they couldn't get someone else involved with his swelling. Our Attending this week said he was going to chat with them and see if they had any ideas or if they felt like they needed to have an official consult. Apparently they did as when I called in this afternoon the consult had been ordered. With a consult comes more tests. Its hard to believe they could test his urine in other ways than they already have but another UA (urine analysis) has been ordered as well.

I also asked in rounds about his feedings. Aaron is on this special formula and they don't seem to want to change him back to breast milk. I have been pumping since he was born and have quite the stock pile as he doesn't take much and for so long he didn't take any. If they plan to keep him on the formula indefinitely I am going to be done pumping, because really what's the point if he's not going to use it. Also, I have a monumental list of other things I could be doing (one of which is sleeping!) as opposed to pumping for 6+ hours a day (its really a part time job!). The doctor looked right at me and said that was an excellent question and one that needed to be answered sometime in the next week. I have had many people tell me it was absolutely ok to stop and I shouldn't feel bad. So let me just say, I don't feel bad at all about stopping. I would prefer him to have breast milk over normal formula but he is on a specific formula that doesn't have the milk fat that he has a hard time breaking down and its filled with the supplements he needs. Supplements that have to be added to the breast milk. This little guy will probably never nurse as his feeds have to be carefully monitored, measured, and fortifier and supplements added and as you can't do that nursing, a bottle of breast milk is the next best thing if he can handle it which at this point he can't. We'll see what they decide in this next week, I'll be fine either way.

Blow Out

Yesterday was a tough day for Aaron. His arterial line failed the previous night and the GI docs had ordered a boat load of tests to be run early yesterday morning. They tried for a new art line but were unable to get one in so they drew blood from where they were poking him. He was none too happy with this and put up a big fuss. Unfortunately putting up a big fuss requires significantly more oxygen and he was quickly maxed out. His nurse quickly reattached his pre monitor to make sure he wasn't shunting, which he wasn't. When he gets that worked up he has a hard time calming down, even with drugs. The doctor decided to cancel his echo and not wean the flolan anymore to give him a break. Unfortunately the GI docs also ordered a comprehensive abdominal ultrasound which did not get canceled. When I walked in it was under way and shortly after I came in our nurse came back from lunch. She was not happy the ultrasound was taking place. She mirrored my feelings exactly! She called our n.p. to ask what was going on and found out she had kept it in place.

While the ultrasound was going on the team came in to do rounds. I saw we had a new fellow this week, she is only a first year so I will see how this plays out. They decided to not try for another art line again (thank you!, I'm sure Aaron says the same thing!). They also upped his feeds to 28 mls a feeding and discussed all the results that were back from the labs drawn earlier, all seemed to be ok. They decided to do one more urine test to see how much protein was in it.

Last night I was able to hold him for a few minutes and we weighed him. I noticed his belly was a little firm but that it looked smaller. He weighed 2240 grams (down from 2360!) and his belly measured 32 cm (down from 34!). His FIO2 is still in the 40's and I am guessing his CRT is low after all the blood tests yesterday morning. I may ask them to run a CRT today if he is looking pale. After we got him settled he went back to sleep only to get fidgety a short time later. The nurse realized she forgot to give him his extra calcium so she got in there to give it to him. She commented that he was gassy when she opened the door up. He continued to be fidgety so I mentioned he may need some extra pain meds. She went to get it and then asked me if I wanted to check his diaper just in case. When I opened it up he had a huge amount of stool. We weighed it and it came in at 18 grams, all stool! No wonder he was fidgety! I looked over and he had tears in his eyes. He can't vocally cry with the respirator but tears he had! Poor little guy. After I changed him I pushed on his belly and it was much more squishy, just how we like it.