One Step Forward...You Know the Rest

I've not been looking forward to writing this post because this weekend has left us disappointed and slightly defeated. After several good days (and posts), there were some stumbles this weekend. Although the pictures we have shared with June don't show her with any tubes, once again, June has tubes. (And she is not happy about it.)

A couple days (Wednesday) after pulling the repoggle (tube in her mouth), the surgeons decided to try taking out the wound vac. Unfortunately, within an hour, the fluids leaking out of June's stomach had soaked through the bandages. The wound vac was put back in that day. On Friday, her wound vac was pulled again. The thought was that the vac might be sucking on the hole in the stomach, not allowing it to close. Since there was still some output from June's wound vac, they used an ostomy bag kit to catch the stomach bile instead of bandages. That evening, the fluid was leaking out of the bag and all over June's stomach. They tried replacing the bag, but it leaked within a few hours. 

The next morning, her repoggle was put back in to suck out the fluids, but the fluid continued to leak out of her stomach. The stomach acid sitting on her skin (even with her nurses continually cleaning it off) started irritating her skin to the point of pain. By Sunday, the wound vac was back in. For some reason, June's fluid output has increased drastically over the weekend. We are not sure if it is because of tubes being pulled in and out, but it sounds like the hole in her stomach has increased in size slightly as well. Today June's stomach was much less irritated, and she was more comfortable; however, she found her tube very annoying. The repoggle is snaked down into June's stomach (just above the hole) to keep the area around the hole dry. June pulled tube all the way out twice today - she was very pleased with herself.

From our understanding, the plan was for June to grow out of her seizure medication because her last EEG showed normal brain activity and the levels of the medication in her system were so low they were not therapeutic. This weekend, the neurologist increased her medication to compensate for her weight. We are not sure why, and we will have to wait about a week before they can test the medication levels again to see if it is even therapeutic. 

We also found out today that June has a second hole in her heart. The hole has been there since birth and is small, but we hadn't heard about it until today. The hole is an Atrial Septal Defect, which is a hole in the wall that separates the top two chambers of the heart. Just like with June's VSD, her ASD is letting oxygen-rich and oxygen-poor blood to mix. The ASD is in the upper two chambers of the heart and the VSD is in the lower two chambers of the heart. Although the hole is small, it is still there. From what we have read (today), most likely the hole will close over time, but if the hole doesn't close by the time June starts school, she will need surgery to close it. June will have another echo in the middle of the month, and hopefully, we will see the cardiologist again to find out the statues of the hole.

The doctors are also planning to do a dye test this week on June's left kidney. In a previous post, I had mentioned the June had blockage in her kidneys. Within a month, the mild blockage in the right kidney had resolved and the moderate blockage in the left kidney had reduced to a mild blockage. The dye test will let them know if urine is splashing back up into the kidney, which could give June more regular UTIs. 

While we are discussing the lower portion of June's GI track, I'll mention the newest discovery. If you are a parent, this discussion won't phase you in the least (in fact, many of you probably discuss this at dinner), but it you don't want to read about poop, avert your eyes. Today while changing June's diaper, I noticed her poop had turned tan in color, not the mustard-yellow it typically is (got a good visual yet?). They are going to check her direct bilirubin to find out what is going on.

There are two types of bilirubin: direct and indirect. The indirect bilirubin is what travels through your bloodstream to your liver. When babies are born jaundice or develop jaundice shortly after birth because they are not eating or getting enough, they need to sit under a light for days (like June did in the beginning). This helps lower the indirect bilirubin in the system. Direct bilirubin is what is made in the liver by indirect bilirubin. They have been monitoring June's direct bilirubin because she was on TPN (total parenteral nutrition fed through her vein) for so long. As I mentioned in a previous post, being on TPN for a long time can cause the direct bilirubin to be high, thus leading to liver failure. So back to June and her poop: the discoloration can indicate high bilirubin. However, it is strange that June's would be high now because she has not been getting any TPN for a while and she is on fish oil (which helps combat high direct bilirubin levels). Hopefully, we will have some answers in the next few days, but in true June fashion, here comes a curve ball.

In the NICU, every baby is assigned to a team, and every month, the neonatologist rotate; however, the residents or nurse practitioners stay the same. In the beginning, one of the nurse practitioners saw how complicated June was and placed her on a nurse practitioner team because the NPs are there all the time, whereas the residents rotate in and out of assignments every month. This was a blessing because June has been in NICU for a couple months now, and the NPs are very familiar w
ith her complicated story (as well as her preferences). For some reason June got moved to a different team this month. Between the changing of June's team, all the specialists rotating, and Jason being sick (meaning we could not be at the hospital as much as we typically are to talk things over), this weekend did not go very smoothly at all for June, and we feel like was took steps away from discharge instead of toward it.

I don't want to go into all the specific details of our frustrations - all I will say is that we luckily have some really fantastic people looking out for our little girl. We know the doctors are very talented and will eventually figure out all of June's quirks. In the meantime, we have been blessed to have found an amazing team of nurses that listen to us and speak up for us if we aren't present during rounds. We are working with management to fix some of the frustrations (thanks to their hard work, we got back on our original team), and hopefully, things will start going smoothly for June again. The beginning of each new month seems to bring a tumble down the hill, but tomorrow is a new day and will hopefully bring some new insights or answers for us and June.