May 15, 2006: Peyton is Born!
May 26, 2006: Peyton has the cataract and lens from her left eye removed. She was supposed to have the right cataract and lens removed, but because of an infection, the left eye was done instead. Due to the infection, she had tubes put in the lacrimal ducts. You now that little "hole" at the corner of your eye on your lower eyelid - closest to your nose? Imagine your child coming out of surgery with long thin tubes sticking out those!! Then imagine a couple days later your two week old baby brushes her hand against one, pulling it out!
May 30, 2006: Peyton has the cataract and lens from her right eye removed.
September 11, 2006: Peyton had a superior trabeculotomy on both eyes. This is a surgery used to treat glaucoma. Surgery was the only option at this point as medications alone were not working. The surgeon worked on a portion of the eye to relieve pressure caused by the glaucoma. There are various stages that can be worked on. At the time, we were told that you can only do a trabeculotomy once on each area, so they work it in stages in the hopes that doing one stage might be sufficient. With Peyton, it was not.
October 2, 2006: Peyton had an inferior trabeculotomy on her right eye. Same procedure as above, but performed on a different area of the eye since the September 11th surgery was not effective on the right eye.
October 30, 2006: Peyton had an inferior trabeculotomy on her left eye. We had a very difficult time managing her glaucoma.
November 15, 2006: Peyton had another trabeculotomy on her right eye.
December 11, 2006: Peyton had a tube shunt placed in her right eye. All prior glaucoma surgeries were unsuccessful in managing this problem, so this was essentially a surgery of last resort. It was not the route the Ophthalmologist wanted to go, but it was necessary. As of the time I am writing this {1/15/13}, this has proven to be a major success.
January 8, 2007: Peyton had a tube shunt placed in her left eye.
July 30, 2007: Peyton went for a routine eye exam under general anesthesia {frequently done for the first four years or so} to check her pressures in her eyes as well as general health of her eyes. She had several chalazions removed from her eyes {4 from the left and 3 from the right}. These are small pimple-like bumps that were forming on the inside of her eyelids.
August 9, 2007: Peyton had a C1 Laminectomy. This is a decompression surgery on the spine. This was actually done fairly quickly - within days of seeing the Neurosurgeon.
August 24, 2007: After repeated ear infections, Peyton had her first set of ear tubes placed {tympanostomy}. She also had an adenoidectomy.
December 7, 2007: Peyton had another surgery for the removal of several chalazions in her eyes.
December 19, 2009: Peyton had her second set of ear tubes placed {tympanostomy}.
April 22, 2009: After a serious problem with swallowing issues was uncovered during a swallow study, Peyton was admitted to the hospital. We weren't even allowed to go home from the study! A couple days later, she had a PEG tube {percutaneous endoscopic gastrostomy tube} placed. We were so reluctant to have a g-tube placed but after learning about these issues, it was a necessity. We could not risk her aspirating her food {all she has ever known has been liquid foods - she has never had baby food as a part of her diet}. Since this time, all food and medicines have been given via her tube.
July 1, 2009: Peyton had excessive ear wax build up, so she had surgery to remove all of that. At the same time, the ENT injected Botox into her salivary glands. This was an effort to help control her secretions. Increased secretions are a problem when you aspirate!
August 18, 2009: Peyton really struggled for a while with severe reflux. She was throwing up constantly. It was horrible. I had to keep a "vomit log" so that I could let the doctors know how much and how often this was happening. She had a Nissen Fundoplication done at this time. This surgery can either be done laparascopically or as an open surgery. Hers had to be the open version. The open version is a pretty major surgery. It left her with a several-inch long scar on her belly.
February 23, 2010: Peyton was diagnosed with Hydrocephalus. As such, she had to have a VP shunt placed. That's "ventriculoperitoneal shunt" if you're curious. Prior to this, Peyton had also been having a terrible time with IV's. Her veins are very small and they roll and they blow all the time. It was becoming next to impossible for her to keep an IV line going, to say nothing of how next to impossible it was to even get one started! I spoke with the surgeon at one point and he agreed that having a permanent line would be our best solution. At the same time she was having the VP shunt placed, she also had a port-a-cath {think "central line"} placed. It has been a Godsend. She has had the same port since this time and I can't tell you the number of times it has had to be accessed for use.
June 11, 2010: Just a minor procedure this time. Once again, Peyton had to have Botox injections into her salivary glands.
September 10, 2010: Botox injections just weren't enough to manage Peyton's secretions. She wound up having some major salivary glands removed. She is left with two very long scars that run along the underside of her jawline. She also had her right ear tube replaced at this time.
October 7, 2010: Peyton had to go in for surgery to extract her top 4 middle teeth. She grinds her teeth so badly that she broke each of these teeth in various ways. The oral surgeon {I mean tooth fairy!} left her $1 in a biohazard bag on her stretcher. How cute is that?! I wonder which resident had to cough up the $1!
December 7, 2010: Peyton's g-tube was convered to a g-j tube {gastrojejunostomy tube}. Instead of the feeds emptying out into her stomach via the gastric {g} tube, the tube continues further down and empties into her jejunum. This was done because of her severe reflux.
October 15, 2011: Peyton had a couple really nasty abscesses in the diaper area. They were drained in the ER. Unfortunately, this did not solve the problem. We were back in the ER very soon afterwards and on October 17 she was in the PICU having them drained by a surgeon under sedation.
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