Unfortunately, as I have stated in previous BLOGs, Ian had several poor side effects of his original fundoplication. The surgery itself did what it was supposed to, but we traded one problem for another. Initially, we were under the impressions that fundoplications were all the same.......... boy were we wrong!! Apparently, fundos come in all locations and in varying circumferences. Ian’s first fundo was a full 360 degree wrap around the esophagus called a Nissen, named after the man who created the procedure. Ian’s new wrap is called a Toupet.... also named after the narcissist who invented the wrap. ;) Fundos seem to be called “Nissens” like tissues are all called “Kleenex.” Weel, if you educate people to believe all tissues are Kleenex, when they find someone offers them an alternative Puffs Plus, you are all of sudden surprised that it has a different feel and maybe even different ingredients and purposes. This is how we realized we had been a little “douped” on the Nissen thing.
Well, today, Ian had his Nissen not necessarily repaired, but undone, repaired, and then turned into a Toupet wrap. The surgeon at CHOP, Dr. Thane Blinman, spent almost 4 hours taking care of Ian in the OR this morning. Taking down the current wrap takes the longest. He made sure to keep everything in place and “reattach” things that needed to be. The first surgeon was a little “scalpel happy” and was a little more aggressive than he would have wanted them to be.
Ian’s surgery was laparoscopic again and has only 4 incisions plus the g tube site, which is awesome..... the previous 4 are now small scars. He will have a total of 9 small scars which will fade over time. Fortunately, we did not need to relocated the G tube or do open surgery.
CHOP: Dr. Thane Blinman
The “undo” was needed due to the failed wrap. In Ian’s case, this is called a “slipped Nissen.” Many things can cause a slipped Nissen such as trouble swallowing or poor suturing, also improper wrap placement...... Ian had none of these, OF COURSE! Ian’s failure was from the retching due to the post-prandial hypoglycemia he experiences after the initial gastric surgery. I have referenced a few BLOG sites about these effects and procedures.
BLOG post-prandial hypoglycemia links
|Bottom: Slipped Nissen|
Dr. Blinman took down the Nissen and reattached the ligament connecting the esophagus to the diaphragm, called the phrenoesophageal ligament. After bringing the stomach down and repairing the hernia, he placed a new 270 degree, 3/4 wrap, called a Toupet. This new type of wrap is what we originally thought was a “partial Nissen” or a “3/4 Nissen.” Sorta like Puffs would be a “partial Kleenex.” As we all know this is not the case, knowledge truly is the key.
As I was sitting in surgical waiting today, I found myself wondering about everything we did for the previously surgery, it’s very easy to think...... well, should we have done this first? Did we do the right thing? And the answer is always “yes” for us. We did the right thing to help Ian at the time. It kept food inside him and allowed him to grow. Unfortunately, we may not have done the GOLD standard for him..... but we did what he needed. We feel VERY VERY fortunately to live within 180 miles of one of the smartest medical professionals I have ever met. Ian’s surgeon has been treating him since December when we relocated hospitals for the awful retching and dumping syndrome.
After all has been said and done.... so far..... we feel very well informed, educated, and prepared to make the decisions we have, and the ones for us to make in the future concerning Ian’s current conditions and troubles. Hindsight is always clearer and it is never wise to look back questioning yourself. I once heard a great quote that said.
“Don’t look back.... it’s not the direction you’re headed.”
Right now, Ian is recovering from this morning and enjoying some wonderful morphine and toradol. He does seem to be in a lot of pain and the meds are doing the best they can. He wants to sit up and kick his legs around and move. No surprise there! We have been watching dvds and spending lots of time snuggling in his big boy hospital bed.
As I sit here now, seeming like a hospital veteran, I realize that I find myself torn between two very different populations. I can easily identify with the first timers, scared and anxious about being away form home and being in a hospital environment....... but also feeling like a part of the families who are “frequent guests.” While we don’t see the same families each time, it is easy to tell which families and children are newbees and which are town residents by now. We feel very fortunately to be part of both these groups. It allows us to remain empathic to Ian and to the other children, but also gives us the extra strength and tolerance to plow through whatever medical procedure needs to be done....... something that new families may not have reserves to draw from.
Being in the hospital is never fun, exciting, or the vacation spot desired... but I have to admit that having your sick child in the hands of lots of professionals that you trust 24 hours a day is very reassuring. It may sound like we LIKE having Ian in the hospital.... which we don’t...... but sometimes, it is EXACTLY where we want him to be. Sometimes what you need isn’t something you want. Knowing someone is there to help you that can tackle from any medical standpoint you give them takes a HUGE load of your shoulders as parents. I’m sure a lot of my fellow “repeat offender” families would agree.
Both good and bad, we have experienced a lot of hospitals..... 6 I think to be exact. I can safely say that this is by far #1 on my list. If I knew this is what was here and I lived a 6 hour plane ride away...... I would have rented an apartment here months ago! After all the misdiagnoses, the residents that we “taught” (not all of them..... some were fabulous!!), and the never-ending explanations we gave which simply ended in a confused look and a “wow” exclamation... it is nice to be somewhere we are finally understood.
Tonight the hospital’s formula room..... yea, that’s right, the “FORMULA ROOM” simply whipped Ian diet together in a snap. No hospital other than CHOP that we have been to has ever had a formula room. Even more, the other hospitals watched us like we were mixing this crazy potion for Ian to drink of the next 24 hours. We did not have to cart special formula around or Rx additives....... it was already here in the formula room. Our nurse told us we were “guests” and would not have to do any of those things unless we felt the need to “pitch in.”
After having Ian be treated like the kid way out in left field, that nobody has any clue of what to do with, it is refreshing to be taken seriously. We never feel like “outsiders” and Dr. Blinman’s reflux clinic has always listened to what we had to say. It’s nice to feel like part of a team, a team that works together and isn’t shooting in the dark.
As I pull together my final thoughts for the night, I think of everyone all over the country, and all over the world that view Ian’s BLOG and think, pray, and send healing light to him everyday. I cannot imagine what it would look like if we all gathered together. The strength of all those people banding together gets us from one day to the next. A while back, I did finally get my “preemie strength” tattoo. It is an anchor, which sits atop my left collarbone, over my heart. Each day I see it in the mirror and feel encouraged. Some days are harder than others, as any of us can say. However, looking at that anchor, I am flooded by everyone and every thought and prayer. It gives me hope when the days seem dark, and carries me through when nothing seems to provide comfort.
Thanks to each of you for being a part of that. As the tears begin to well up in my eyes, I am now going to go watch my beautiful baby boy sleep....... and probably cry a little more at his peacefulness and bravery. I strive to more and more like him everyday!
Much love to all!