Memorial Service

We will be having a memorial service for Andrew on Monday, November 2nd at 6:00 in the afternoon at the Hall-Wynne Funeral Home in Durham, North Carolina.

In lieu of flowers, we would request donations to either the The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support (CHERUBS) organization or the The Parker Reese Foundation

Angels

Andrew Weston Hobbs passed away today at 5:35 pm. His long battle with CDH was cut short by a small bowel obstruction that they were unable to repair.

“There's no tragedy in life like the death of a child. Things never get back to the way they were.” - Dwight D. Eisenhower

Long Winding Road

Today has been a hard day. Andrew's trial off ECMO did not go nearly as well as last Thursday and no one seems to understand why. He is able to oxygenate fine, the problem seems to be with ventilation and getting rid of carbon dioxide. To look at his monitors while clamped, you wouldn't guess there was any problem, but then when the blood gases come back it is without question that he is back to needing ECMO to stay alive rather than just buying us more time to use lower ventilator settings. With that said, time on ECMO should only make your lungs better or the same, not worse and we are very fortunate that we did not come off ECMO while things looked very promising last Thursday, his right lung would not have been enough to support him through whatever is going on in his body presently.

Over the last several days, Andrew's pulmonary hypertension issues seem to be worse and his belly seems to be very distended and tight even though his drain is working and putting out quite a bit of fluid. He has vomited around his nasogastric (ng) tube about once a shift for the last 2-3 days- they did pull his ng tube back some this morning after looking at the x-ray results. They are consulting the pediatric general surgeon to see is he has any other advice or input.

Andrew is starting to approach the time frame on ECMO where more complications can develop and the doctors are anxious to try and get him off if at all possible. For that reason, we will be trialing off again tomorrow and possibly for several days in a row hoping to avoid some of the complications from long term ECMO use. These days are completely exhausting and draining for all of us. We hope that you all understand that because this has been so trying, we will probably not be posting as often given that no changes arise. Please know that if there are any major changes, we will definitely be letting everyone know. Thanks so much for the support and the continued prayers for Andrew!

It's the same old story...

It's the same old story; Same old song and dance -- Aerosmith, 1974 "Same Old Song and Dance"

Today was the fourth attempt to come off ECMO. Again today his blood pressure was good but we were on high ventilator settings. Since this would still not allow for room to move up should he need it, we have remained on ECMO. I really wish there was more to report...

Andrew was given a half dose of surfactant this evening and his hemofilter has been set to pull some fluid off of him. It looks like we will try again on Monday.

It takes both rain and sunshine to make a Rainbow

“Necessity never made a good bargain” -- Benjamin Franklin

Today has been a very good day! We trialed off ECMO for the third time today. Andrew's blood gas results looked great for the full three hours that he was off the pump. His blood pressure was a little low but all in all he looked great. We were even sent out of his room so that they could decannulate and take him off the ECMO. In the end, it was decided that a couple more days on the pump could allow for lower ventilator settings (currently maxed out) giving us some room to move once they take the ECMO away. It is amazing knowing for the first time that Andrew could make it without the device that saved his life just three short weeks ago. We are now using the ECMO to allow for improvement more than needing it to stay alive. The next trial is slated for Saturday.

Because they decided to leave Andrew on ECMO for a couple more days, they decided to completely redo the sutures holding the cannulas in place. The leaks around them that have been plaguing us for the last few days seemed to have stopped.

Andrew is still making urine and his kidney numbers are starting to trend down though there is not much of a change that can be seen yet. We hope tomorrow morning we will see some real improvement.

Andrew's stitches from his chest and abdominal incisions were also removed today as well as the other large pleural chest tube. He did need a smaller tube to replace the bigger one but that is still a huge improvement.

All of these changes this afternoon allowed for Andrew to be moved a little more easily and his team took the opportunity to clean him up. Below is a picture following his bath. During the bath it appeared that the new gel mattress his nurse Amy picked up from the intensive care nursery also seemed to help the red places on his back. We don't want them to form into pressure sores.

Today has been a GREAT day and a rainbow among the dark clouds...

Happy Anniversary

We apologize for not updating the blog in a couple of days. We are so grateful for all the support we receive from each one of you and hope that you all understand how tiring this whole process is for us to go through.

While I know you are all anxiously waiting to hear the latest on Andrew's progress. I first have to take time to tell my incredible husband thank you and happy anniversary. It was five years ago today that I married my best friend. The vows we took on that day are promises that I am so grateful for today: in good times or bad, in sickness or health, for better or worse. We had no idea five years ago how much we would be going through exactly five years later and how those promises would really be tested. These latest trials have brought us even closer together. While I would not wish the latest experiences we have had on even our worst enemy- I am forever grateful that I have my best friend by my side and want him to know how much he is appreciated and loved and admired! Happy Anniversary!

Now for the latest updates on Andrew...

Andrew is making more urine now although the lab values measuring his kidney function have not come down yet. The nephrologist believes that his making urine now is a good sign and that hopefully the still elevated numbers we are seeing are the results from what was done to him over the weekend and that those numbers will eventually decline now that we are giving him the fluid he needs and actually giving his kidneys a reason to function.

We attempted to trial off ECMO again yesterday. It was the smoothest trial off I have seen and the staff did a fantastic job! Unfortunately, Andrew does not have enough lung tissue yet to be able to oxygenate his own body. His blood pressure and heart rate looked great and his pulmonary hypertension was not too much of an issue. His monitor did not look bad being clamped for 1 1/2 hours, but his arterial blood gases were more on the devastating side. He does have more of a pleural effusion on the left side that they will most likely drain off today and they will also try another dose of surfactant and hope to trial off again tomorrow. If he does not successfully trial off tomorrow, then the plan is to switch back to VV ECMO (lung bypass rather than lung/heart bypass) which has less risk of complications. He does have two clots on the arterial side of his circuit now which is very scary- they are watching them closely. He is also bleeding from his ECMO catheter insertion site and they will be addressing this as well today.

I knew this journey was going to be difficult, but I truly had no idea it would be this difficult. My prayers have become more like begging and pleading that he will be able to survive this. I thought that by this point, the doctors would be having "the talk" with us, but they have not. In fact, they said yesterday that they were encouraged with his progress and hope that his lungs just need some more time. Andrew is writing the books on how this is to be done since this is not the usual CDH pathway due to his heart defect as well- the good news is that his heart is doing really well now!

Thanks for all the support you have given us! Also, a special thanks to all my co-workers at the ASC for the incredible gift bag filled with snacks and gift cards for meals, for our great neighbors who left a gift basket at our house yesterday filled with yummy Southern Season treats and a much needed coffee gift card, to the Cherubs Organization for the totebag filled with really thoughtful and much needed PICU survival items, to Brendan and Cody for continuing to mow our lawn, Dr. Ames for getting iv access for us when there was none to be found, and to Kathy for the gifts and for giving us all the many chocolates to be able to give to all the wonderful staff taking care of Andrew!


Need to go get ready to see my sweet baby boy this morning. Hope you all have a good day!

Fluid Rollercoaster or Waterslide?

This post has been updated at the bottom

There are three kinds of men. The one that learns by reading. The few who learn by observation. The rest of them have to pee on the electric fence for themselves. -- Will Rogers

Today I have felt like each of the men described in the quote above. In our last post we mentioned the desire to get more fluid out of Andrew and dry him out. We have read as much as we can put our hands on and know this is the right thing to do. After observing his lack of progress and eventual transition to renal failure, we became more convinced than ever that the only fluid we were moving was that in his blood. We started requesting that the fluid they were removing from his ECMO circuit (hemofiltering) and the diuretic drugs be stopped. After an entire night of asking and begging that they stop trying to dry him out, he looked horrible. His eyes were so sunken that the lids would not close on their own when he slept and we had to put in eye drops. His blood chemistry was also starting to look bad as were the numbers that tell you how his kidneys are doing. After a few more hours, I lost my ability to control myself. If you took the other issues off the table and looked only at his fluid levels, kidney failure is what most people would expect. At the beginning of the last trial off ECMO the attending stated we should be "looking at the patient and not the numbers". After an entire night of beating the fellow to death asking her to end this, that same attending had not been there to look at the patient. Needless to say, I said MANY mean things that I should not have... I should feel bad about this but it is how I felt and I was tired of being ignored. So, ten to twelve hours later, the team rounded and decided to stop the diuretics but continue the hemofiltering but at a lower rate. This was a good, albeit late, first step but at that point we would take what we could get.

A consult with the pediatric nephrologist was requested along with a renal echo to look for clots in the kidneys. The nephrologist on call was Dr. Wigfall. I can not begin to explain the relief I felt when I saw him enter the room. This is a man that is very active in the Medical School and I have had a little contact the with over the years. His attention to detail is exactly what we needed to solve our dehydration induced renal failure. His conclusion is that we were too aggressive with the hemofiltering and probably created a situation where the kidneys were not working because there was nothing for them to do with the current lack of vascular fluid. This was great news because shortly after this, hemofiltering from the ECMO machine was stopped and some fluid was given to replace the huge vascular loss. It took several hours for the changes in Andrew's appearance to return to their current almost "normal" state.

Andrew also developed some oozing from his ECMO cannulas. The team made several attempts to control the bleeding but ultimately had to call in the cardiothoracic surgery fellow to do some stitches. This seemed to work well, for the few minutes we were still there anyway.

The really GREAT news is that we are just getting home and Andrew is starting to pee again. Up to this point he has only put out 3 cc's of urine all day. When we left the hospital at a little after 11pm, he had produced almost 22 cc's. He is still relatively inactive and looks like he has no energy left at all but we are excited about the small amount of urine we see now.

The plan for tonight/ tomorrow is to start weaning him down on the ECMO flows. They are planning a VERY slow wean so I feel much better about this than any of the other trials. I have to wonder if it would not be better for him to be more stable...

The other news we have to report is that Harley (our roommate) passed away in her mothers arms this afternoon. As she was unable to get a heart for transplant, it does remind me of why I am an organ donor.

EDIT: Since I posted this, five hours has passed. In that time they did try to cut the flows from Andrew's ECMO which also lowered his urine output. They have returned to full flow again but his kidney chemistry numbers are looking worse. Nephrology has been consulted again. I am also excited about a new attending in the PCICU since all his renal issues started at the same time the last attending took over and started pulling fluid off.