Sometimes it seems like so much happens in a short amount of time and sometimes very little happens. Well, since my last update, various things have happened but I also realized that there were a few things that I hadn't shared in previous posts.
Truly, I have gone to both ends of the spectrum (of emotions) in the last week (MONTH) so then I sometimes share too much and sometimes maybe too little. The posting is for benefit of keeping our readers up-to-date but also for documentation purposes so I usually like to be thorough (bet you couldn't guess that about me ... :=)
Anyway, so here's what has been happening here. Over the last few days, we've had some visitors each day. Visitors are GREAT! Having other people here helps to pass the time and also allows us to share what's going on (instead of keeping it all in).
Grandma and Grandpa Prendergast came on Tuesday while Rees was still in surgery. They brought us some lunch and snacks. On Wednesday, we were visited by Pam and Bill, dear friends ... who brought us some snacks and gifts for Rees.
Big Brother Ben also came on Wednesday and hung out with his 'lil brother for a while.
On Thursday our wonderful next door neighbor, Joyce, came to visit (but I forgot to take a photo). Soon, Joyce, we're going to have tea and I'm looking forward to it.
A special co-worker of mine, Diane, who also happens to volunteer at Children's Hospital, also came by on Thursday. She stayed with Rees for a bit so that Baba and Mama could go out for lunch. While we were out, that Diane, ... she's so good, she figured out that Rees was trying to ask for his little tablet and then she helped him as he tried to play with only one hand.
Friday, which is today, brought Auntie Jen-Jen and Uncle Dave and they brought him a few "Minion" surprises!
Rees and Uncle Dave even played together. Rees would smile and even giggle a little bit.
I'd like to introduce you to "Kevin"! Kevin is the teddy bear in the photo below ... he was the designated hospital buddy (who was previously known as Teddy) for Rees on the day of this most recent surgery. As we drove to the hospital, Rees all of a sudden referred to him as "Kevin" and now that is his name. (this is no doubt because he loves the Minions Movie)
(I just love this photo!)
Well, "Kevin" has had to go through all the same things Rees is going through ... he got a hospital bracelet and he had to get the "goofy" juice just like Rees did. Kevin didn't like the way it tasted any more than Rees. By the faces they made, it is pretty YUCKY stuff!
Kevin's eye is taped, just like Rees!
He gets to have popsicles and he EVEN has nausea. We're so glad that Rees and Kevin are in this "together".
So, you will recall from my previous post that Rees is basically laying flat and not getting up at all. This is because he has the lumbar drain and it has made him nauseated to the point of throwing up. So, on and off, they have been treating the nausea and usually makes him sleep for quite a while. Yesterday, when we thought the nausea had subsided, Rees was so hungry that he ate three orders of scrambled eggs. He kept this down and we were thrilled!! This morning, the nausea started up again and he threw up all the juice he had drank. This time, though, we did not choose to medicate him and within a couple hours, the nausea had passed and Rees then ate another order of scrambled eggs and then he proceeded to eat most of the croissant I was having with my lunch. I had to go get another one and he ate half of that one too! Crazy kid!
In other (new) developments, during the last night, Rees started to ooze some fluid from the base of the upper incision. I was asleep and unaware of this ... halleluia ... but I was informed when I woke up. I was told that Rees was being put on "NPO". NPO is a medical abbreviation that means nil per os, or nothing by mouth. It means that a patient isn't allowed any food or drink for medical reasons.
So, I was thinking something was wrong and they were anticipating taking Rees back into surgery. I did find out a bit later that Neurosurgery had come by during the night and that they said they didn't think the fluid looked like CSF. After I was up with him for a while, the oozing started again. Oh, I could tell ... here we go again, I thought ... so I asked the nurse if she could get some gauze pads because my assumption was that shortly, more than just a tissue would be needed.
She very willingly complied and she came back with a pack of 200 gauze pads!
And it was a good thing because within just ten minutes, the fluid started running out. This actually alarmed our sweet nurse but we assured her ... "This is what always happens!" Nonetheless, we were irritated ... very irritated! The doctors had just been in literally minutes before and, of course, he didn't start the draining until they left. Well, the nurse had them paged and said she thought they should come back.
It seemed that there was some irritation on everyone's part ... the surgeons had just scrubbed in for a surgery and it would be a while before anyone could come up. Well, not too terribly long after, the Plastics Resident and Student came. And I unloaded ... calmly and kindly ... but I unloaded. I said that since they were the ones that came, they were the ones to get it. I shared my frustrations and explained all the steps that had gotten us to this point (that they weren't really unaware of as they have been a part of this the whole time). We learned from them that the lab results of the fluid that was collected during surgery were returned. Guess what folks?? The Beta2 came back negative!! Remember, Beta-2 transferrin is a CSF-specific variant of transferrin and is used as an endogenous marker of CSF leakage.
So, we were pretty interested in moving on to other measures!! We had asked on previous occasions as to whether or not the fluid/bubble could be a seroma and/or what might be an indication that it is NOT a seroma. The Resident did agree that it could be a seroma but that typically seromas do not occur on the face. I have also read that in most cases the fluid is more clear than bloody looking. We discussed possibly removing the fluid using a syringe and they said that had been a possibility. We were grateful to be able to vent our frustrations and to discuss the situation further.
The nurse was then contacted and she came in and applied a cream that acts as a local anesthetic and then a clear bandage to keep the cream in place. The cream would take about 30 minutes to take effect.
The Plastics "Fellow" came next and her plan was to aspirate the bubble of fluid. We were expecting this to be a piece of cake!
Well, NOT SO, folks! Not so! She pierced the skin and pulled the plunger of the syringe and NOTHING came out. He did bleed a bit and some fluid came out the skin but ... so, she thought the needle might be too small ... and went to get a larger one (used for thicker fluid?) ... Again, she pierced the skin, pulled the plunger ... and AGAIN NOTHING!
SO STRANGE! And we've already asked ... there isn't a test they can do to determine WHAT EXACTLY the fluid is, only what it's not.
A while later, the neurosurgeon came by to see how Rees was doing. He did say that he's mostly convinced now that the fluid that continues to build up in Rees' face IS NOT cerebral spinal fluid (based on two negative Beta2 tests, the fluid isn't actually coming from the nostrils which is more typical AND the fact that HE COULD NOT FIND A LEAK during the exploration that occurred on 2/9) but at this point he does not want to remove the lumbar drain. They just want to continue to monitor the situation and it's better to leave it then to remove it and have to do it again, especially since during surgery the fluid looked so similar to CSF (both times). He did say they are still debating whether or not to inject dye into the spinal fluid which acts as a tracer. From our perspective, it has at times, appeared that they are spending an awful lot of time attempting to treat something that isn't actually there but from their perspective, they are diligently addressing what could be a very serious and/or catastrophic situation and ultimately ruling it out.
Regardless, we are still here ... doing the best we can do to deal with this. Because of the drainage and the attempted needle aspirations, Rees (AND Kevin) now have pressure dressings taped across their faces.
Have I mentioned lately how amazing this kid is??
After the morning's bout with nausea and vomiting, he went back to being incessantly hungry and cheerful again. They've already told us we're here for the weekend. We are all still residing in Uncertainville, located at the intersection of Baffled Boulevard and Unprecedented Avenue.
And for those of you (and you are many) who have advised, suggested, and/or requested that we seek other professionals and organizations in getting to the bottom of this, ... we have considered this ... even before all of the suggestions. We want to get to the bottom of this more than anyone. And we have brought this up over the last few days. But we also have been affirmed that the teams we have dealing with Rees' case are doing everything they can and are providing the best care possible. For now, that's all we have and it has to be enough. God is keeping our boy infection-free and stable for the time being. Not sure what's happening under the gauze dressing; we'll see tomorrow when the team comes back to see Rees. Until then, we're hanging in there and we really appreciate all of you who are hanging in there with us.
Good-Night...God-Bless from all of us.
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