Wow, this is another long one!
Ok, I figure it's time I give you a little more that what I wrote a week ago Tuesday. Too many of you have been begging to know what's going, for good reason, and I am leaving you all in the dark.
Last Tuesday, little man had his stomas connected ("reanastomosis"), and a Brochoscopy done (think of like an endoscopy, but down into his lungs). He was scheduled for his circumcision the very next day, but it was never done. Even though I told you all in the original email that he did well in the surgery, that information actually turned out to be quite different.
Yes, the surgery did go well, we had some confusion about having two apendixes removed (there is a story behind that). And the immediate post-op recovery was ok. It was the long term recovery, actually all the way until today, that was really hard on all of us...including the nurses. The night after he was recovering he was taking extremely badly to his ventilator and all the other things plugged into him. The nurses could not keep him calm, so they had to sedate him. The gave him his Versed, but it still was not enough to keep him from thrashing violently and risking tearing open his incision, and pulling apart the reanastomosis. So they gave him a paralitic called Pavulon (I will tell you some crazy stories about this drug later) to keep him from moving at all. In fact, the morning after that gave him that, the doctor called us and said, "if you are coming in, realize that he will look like a vegetable." What we weren't ready for is the fact that he looked like a water balloon. His whole body was so swollen that his face looked like someone smashed it into a wall with all their might. You could not distinguish his eyes from his forhead, or his mouth from his nose. It was all just flat...puffy, but flat.
Because he was so edemadous they had to give him lasics (most of you should remember him having that from the very beginning emails). It is a drug that helps him pee off his edema. This kid, before his surgery, was weighing around 12 lbs. He weighed in, after his surgery, at his worst, 14 lbs 14 oz. More that 2 lbs of water weight. This lasics was making him pee more than 1000 mL of edema every 24 hours. Now you and I will do that in one go, but for a person his size, that is really impressive...and good!
{I know I am missing something here...so we will save this thought until I can talk to Tia again and refresh my memory...insert this thought in a later email}
So things were going well, or as well as could be expected, when the doctors decided that his platelet count has been too low for too long to do nothing about it. This is something that we have been watching for some time now, but could not understand why his numbers kept coming back low. So the final decision was that his IV in his foot had been in for so long that it was giving false readins. You see, when you leave an IV in for too long, it can start doing weird things. Like there could be a blockage at the end of the IV, it can cause infections, all sorts of neat stuff. So they decided to relocate his IV to a different site. In the end, they had to put it in his head...again! It is a PICC line that starts at his head, and feeds all the way to his heart! We can give IV drugs straight to his heart.
The doctors decided to extubate him today. YAY! He is off the ventilator...again! YAY! This will hopefully help with getting rid of some of that edema he has also. He was WIDE awake before they began to take it out, and was sound asleep just moments afterwards. To Tia and I, we think he was finally so happy, and comfortable, to not have that stupid tube shoved down his throat anymore that he decided to take a good long well deserved nap.
So except for what I believe is missing from that little snippet above, I think that's about it as far as the update goes. If you wish to continue reading, I will tell you of some of the battles we have been fighting with these other doctors and whatnot...there are three of them.
The first came about when one of the Neonatologists came to Tia and said that it was in the report that the surgeon had done an appendectomy during his third surgery. SCREEEECH! everything comes to a standstill!!! Tia, "Doctor Throne sat at our bedside after his first surgery and told us that he removed his appendix then. How could he have done it again during his third one?!?" Confusing, huh? Well, we thought so also! It took something like 5 days and many arguements to get to the bottom of this. And here is how it went! Oh, wait...before we begin, I need to throw one more name at you...Dr. Cantlin (he is the Dr. that did the bronchosocopy...he is an Ear, Nose, and Throat doctor)
We call Dr. Thornes office and speak with his assistant trying to ask if she had any idea about his two appendectomies. She could not understand what Tia was trying to ask, she she asked her if she could do a little research and call Tia back. So she did. About 30 minutes later, she calls back and I answer. She told me that the final decision for the appandectomy was that it was taken on 8/1/08. Doesn't that sound like a familiar number? She continues her explination for a bit before I stop her clarified what the date was. She told me again that it was on 8/1/08. I told her, "Mam! That is the day he was born. There is no way he had an appandectomy the day he was born". She stumbled around for a bit and finally found the date. She then proceeded to tell me that there was no appandectomy done during his SECOND surgery, the one where he had the reanastomosis, which was done by Dr. Cantlin. Wait, something sounds funny here too! "Mam, his second surgery was to correct Stoma Necrosis, and remove necrotic bowel tissue." Her response was, "Did Dr. Cantin do that surgery?" "No mam, Dr. Cantlin is an ENT. Dr. Thorne did his second surgery." "OK, so then Dr. Cantlin did his reanastomosis...it looks like on the 20th of August." "No mam, the Stoma Necrosis was done on 8/20, and by Dr. Thorne. The reanastomosis was completed on 10/28, also by Dr. Thorne. What we are talking about with you has nothing to do with Dr. Cantlin." "Ok, so then what is the question." OH MY GOSH! ARE YOU FREAKING KIDDING ME?!?!? "What we want to find out is how is it possible that my son had two appandectomies." Her final answer, "I don't show anything that says we did." "Well, Dr. Thorne told Dr. Barsoti that he did. And that's what we want to find out." She said it must have been miscommunication between the two. She calls back a few hours later to tell us the same thing that a different Neonatologist told us. "Dr. Thorne said that he did the appandectomy during the first surgery. During the third he saw that the appendix stump was not quite tied off correctly and so, like tonsils, a small portion of his appendix grew back. He removed that small portion, and re-tied off the stump so that nothing will grow back again." YAY! Finally an answer!
The second one comes as no one will do his circumcision anymore because he has gotten to be too big, too old, and too sick. We don't have a docotor willing to touch him, and even if we could find one, we don't know if we will have the money to do it anymore. We did pay a pediatrition to come do it, but now that he does not feel comfortable, he has sent me my money back. Because this is considered a cosmetic surgery, insurance will not pay for it. Because he is so big now, they will need to give him a general anesthetic. Yeah, we get to pay for all of that also. What we don't understand is why the hospital wouldn't let the pediatrition in earlier when he was smaller and not as sick. Before the surgery! We don't get it, and they don't have a good answer for us! So now we are stuck! We don't know what to do. If they ever end up putting this Broviac in (a semi-permanent IV in his chest), we will get a different surgeon who can do the Broviac, and is also willing to do the circ as well.
Finally, the third fight, which is really not a fight at all, but stupid all the same is going back to Dr. Thorne's office. We tried to ask a very simple question today...when was his first surgery done. Was it 8/4 or 8/5? We have a consent form singed on the 4th, however, I also have a copy of the surgeons report that says the date of operation was 8/5. In this report, the very first line says that "Baby Boy Ruck was taken back to the operating room on this day of life 3..." Now wait a minute! How can the 5th day be his 3rd day of life? Also, there is some speculation of the NICU considers the first 24 hours as day one, or if they consider the day he was born as day one. They couldn't tell us that either. So we are sitting there in the NICU at his bedside with 3 nurses trying to figure out what day his surgery was actually on. I think I really pissed off one of the nurses when I mentioned out loud that how they do their paperwork really sucks and there are far too many discrepancies in his chart! But I don't care, I am glad that they know we feel frustrated by it!
So that is our fun week we have had.
Well, you want to know something crazy about this drug they gave Ethan, Pavulon?
Pavulon is a nerve blocking agent...a paralitic. Pavulon is also used with sodium thiopental as a lethal injection used in capital punishment in some parts of the USA. It was also used as the drug of choice by the mass murderer "Angel of Death" Efren Saldivar (check out this link http://en.wikipedia.org/wiki/Efren_Saldivar). Yeah, they are giving this crap to my 3-month-old son. How stupid is that?
Ok, this has gone on for long enough. Hopefully there is enough information here to feed the hoards for another week...lol! I am just kidding!
Take care to all of you out there that are praying for us. We appreciate each and every one of you! Keep your eyes open for a simple website we are putting together for Ethan. It won't have much, but it will have all his updates, pictures, and even a place to sign his guestbook and leave prayers for him that we can print out and read to him!
So until next time...which will probably be like another week...
- Kip, Tia, Riley, and Baby E -
p.s. Mom, because you asked, we got an answer for you! PICC = Percutaneous Intravenous Central Catheter
Percutaneous = Denoting the passage of substances through unbroken skin, for example, by needle puncture, including introduction of wires and catheters.
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