The biggest thing going on lately is our 5 yr old son Treytan having medical issues. Here is a letter that was sent out on our behalf by the Patriot Guard….
The Whole Story:
Treytan Jo started kindergarten in the fall of 09, healthy & happy. The school had his eyes checked as part of their annual routine. The nurse suggested TJ may have vision troubles & recommended he see a doctor. He went to a local eye doctor who said he couldn’t tell if he had trouble seeing or if he just “wanted glasses”. Around this time his parents began to notice changes in his personality. He was becoming more angry & aggressive as opposed to the sweet, shy little boy he had always been. He returned to the eye doctor for a recheck in January. The doctor found TJ to be almost completely blind in his left eye! He said the eye looked healthy to him, so he sent him on to an eye surgeon. In Feb he saw the eye surgeon. After multiple tests, the only thing he really found was that the nerves in both eyes were pale & chalky. He called TJ’s pediatrician & asked him to get TJ in for an MRI. The MRI was scheduled for March 10th. TJ went to the pediatrician March 4th to have a pre-MRI physical, required because TJ was going to need sedation. The doctor said that he wanted to do an xray of TJ’s head. He said that xray in particular was not used anymore but he wanted to rule out any abnormalities in the “turkish saddle”. When the xray came back he said it did not look right. Friday morning they called & said the radiologist agreed, it looked as if there were a lesion or tumor near the turkish saddle. They called in a pediatric neurosurgeon & a pediatric oncologist. A few hours later TJ went to the ER to have a CT scan where it was discovered that TJ has a condition called hydrocephalus.
Hydrocephalus is an abnormal accumulation of fluid (cerebrospinal fluid) thin cavities called ventricles inside the brain. CSF is produced in the ventricles, circulates through the ventricular system in the brain & is absorbed into the bloodstream. CSF is in constant circulation & has many functions. It surrounds the brain & spinal cord & acts as a protective cushion against injury. CSF contains nutrients & proteins that are needed for the nourishment & normal function of the brain. It carries waste products away from surrounding tissues. Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced & the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge & the pressure inside the head to increase.
The question then became, what happened to cause this & is it primary (hydro only) or secondary (caused by something else)? The MRI revealed that TJ’s hydrocephalus was caused by a mostly liquid filled cyst, the size of a lemon. So large that it compressed both optic nerves & the brain stem. Because of the brain stem’s involvement removal could be life threatening. Surgery was scheduled to put in a shunt to slowly release the pressure from both the cyst & the hydrocephalus, as well as to biopsy part of the cyst to hopefully confirm it is benign.
TJ’s surgery went well with the exception of the cyst bursting when they biopsied it. This was not desired because the pressure was then a sudden change instead of a gradual change the brain could adjust to. A shunt was put in on the top of his head, comes out of the skull on top & runs under the skin to the back of his ear where there is a computerized valve. It then is threaded through the neck, shoulder, into the abdomen, & ends up in the stomach. This will remain in place for the duration of his life since the cyst & the hydrocephalus will not be “cured” & the CSF fluid will not ever properly drain the way it does in healthy circumstances. The shunt will need to be revised & perhaps replaced anywhere from every few months to every 10 years. Worst case scenarios have included a child having surgery 11 times in one year, with best case being once every 12-13 years. We hope for the best, of course! TJ will not be able to participate in any contact sports or activities that would be “normal” for others as they could be “dangerous” for TJ. We will also be eliminating all latex including clothing so as to avoid the development of any allergies to it as that is what the shunt is made from.
As of today the family is waiting the biopsy results while keeping TJ as comfortable as possible while he goes through what we might feel as a migraine. He will have 27 staples removed in 10 days & a repeat CT scan in May to be sure that the shunt is functioning properly.
AND my update from Friday - One week post surgery —
Well we figured we should probably update since so many are asking how Treytan is doing. He is recovering well for the most part. He gets pain in his head and his stomach. He especially gets pain in his stomach if he sits or lays for too long.
Last night Matt took Madi & Tristan to the annual hockey banquet/awards program while the rest of us went to MacKenzie’s music program at school. A half hour into it I had to hold Treytan and rub his tummy for him because it was hurting. (He is a big guy - hard on ol’ mom’s back!!) I suppose having surgery in the tummy is bound to affect him some until it’s healed up. Personally having had stomach surgery I know how painful it was for me. So anyway, it reminded me that he isn’t just bouncing back and probably couldn’t handle full days at school yet.
He got to see his music teacher, his class teacher, his principle, and some others at the program. All were so happy to see him. He at first insisted that he keep a hat on to hide his incisions and staples but eventually let me take it off and showed people. Later, he didn’t see one of us on the side that his eyesight is almost blind in and when he was alerted to that we were there he seemed to realize that he didn’t see us because that is his “blind side” and it upset him. A bit of a meltdown, a few tears, and some hugs were necessary. After the big trip out to the school he insisted on sleeping with us and cried a bit. A lot like a baby when they get over stimulated. Another reminder that he is recuperating slowly and we shouldn’t expect him to just bounce right back. He is doing soooooooo incredibly well though - he amazes us everyday. To think he had “brain surgery” one week ago is almost unbelievable.
He has continued to ask for a puppy of his very own and we have continued to look for something for him that would be a good breed, affordable, etc… We did find a puppy that is a small breed - a duke mixture of small breeds really - A little girl who does not yet have a name, who is 1/4 of each chihuahua, pug, boston terrier, & shitzu…. she is adorable and she LOVES him. She follows him around like he is her mommy. He is really enjoying it!!! Any name that we have come up with thus far is not acceptable to him. He really likes “Sweet Pea” but I said that’s what I call him and that could be confusing. Who knows, we may have to scrap Sweet Pea as my pet name for him and give it to the puppy. At any rate, she has lifted his spirits and he is so far being a really great “puppy daddy” 
We went and got some lumber today in hopes of getting a room built off the back of the house for paint & storage. This will enable us to get Treytan a bedroom of his own, finally. He is really looking forward to having all of his gifts in HIS OWN room. He has balloons from the hospital he wants us to deflate and hang on the wall, along with several stuffed animals and other goodies. And I think sleeping in his own bed as opposed to on the couch or in bed with us will be great for him as well. So, construction is underway as soon as the back deck, which will be the “base” of the new room, is dried off a bit from the snow melting.
When we got home from our quick trip to get lumber Treytan was pretty pooped out and aching. These outings seem to take a lot out of him. We plan to go to the circus on Sunday. I know he will love it but we also need to be sure he doesn’t overdo it.
Treytan is going to his pediatrician here in Dickinson on Monday to hopefully have his staples taken out. They are really starting to irritate him. After that he can go back to school. He still takes some tylenol and advil for pain but that’s okay.
We have not gotten the pathology results back yet and though we are almost certain they will be benign it will be really great to get the official word and feel that much less burdon. Hopefully we will hear Monday!
As many of you know I volunteer with the North Dakota Patriot Guard and they have decided to raise funds for Treytan. We are so humbled that they would want to do something like that for us. They are accepting donations for Treytan but will not donate any funds not specifically donated for that purpose because the mission statement is to serve military & veterans. At first we really thought we should decline the offer, but after much thought, we decided it was best to not let our pride get in the way of helping Treytan. There are several things we can use funds for that will help him including ridding our home of latex for his health, fencing a safe area in our yard and putting some safe play things in it for him. He is not going to be able to just go ride scooter or bike down the sidewalk or street like most kids can anymore. And we don’t even have a swing set or sandbox or anything like that. So, that is one idea we had for IF people did donate. We will see what happens.
The last year has been such a roller coaster. Bobcat laying off, closing down, Matt being unemployed for 7 mos, & then the move from Bismarck to Dickinson where we are around a lot of family and friends but making substantially less income, having a terrible time making ends meet, and then with these medical issues. Some days we wonder HOW MUCH MORE??? (can we take) but we are constantly reminded that we are so greatly blessed, we have no right to question why, we have no right to complain. When we think about the family and friends we have, and the awesome kids we have, and each other, we are blessed so richly. We have no business feeling otherwise!!
So for today I will close. Final thought: Romans 8:28 “And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them”
We want to be the kind of people who think about His promises all the time, believe the best, and keep hoping when others just give up… We also want to raise our children to have this kind of faith. We will continue to pray & strive for this even though some days it can be difficult.
That’s a lot to digest for now so I will write more later…..
Blessings
Tarra