<Phase Four recap: After a couple of months and multiple spinal taps at the first hospital, we are moved to Pittsburgh's Children's hospital for a possible shunt. However, Bahcet's is considered and he's positive to APS.>
Within a few hours at the new hospital, Pittsburgh Children's Hospital (PCH) Rocky was schedule for the spinal tap. The same as in Youngstown, he must lay flat for hours to give the brain time to adjust to the 'new environment' with the absence of the excess fluid. I made a trip or two while Rocky was sleeping and purchased a few more Beanie Babies at the gift shop so when he'd awake, I could ease the pain a bit with the happiness of a new Beanie baby to play with. He eventually adjusted after about a half of day and starts to talk and continues to lay on his back and tries play.
However, laying on his back is becoming more uncomfortable for him because the ulcers on his back side are at this point oozing with puss and extremely red in color and swollen and not to mention, very painful. In addition, he also, on and off for the past several weeks will have spurts of sudden diarrhea attacks. I thought the diarrhea was just because he was just so ill. But I did notice, he could just be walking and he'd look at me and say uh-oh. He had absolutely no control of bodily functions and it would come on so suddenly. It was basically water that would pass right through him.
We are introduced to a rheumatologist and she explains that some of the symptoms he's experiencing is related to a disease called Bahcets (sometimes spelled Behcets). The very watery, uncontrolled diarrhea, ulcerations on the bottom side, ulcers in the mouth, and Anti Phospholipid Anti Body (APS), Papiladema along with other eye issues, clotting... these were all symptoms of this auto immune disease, Bahcets.
Hearing this, I am thinking could we possibly getting to some answers? Is there a cure? How will we be able to find out if he has this if one cannot draw blood and test him for this. The answer that was given to me was one that I never thought would become true. The rheumatologist explain, the only way we can diagnose him with the disease will take about two years. This disease is studied over a coarse of two years, and there are 14 major symptoms associated with the disease and there are nine minor symptoms associated with the disease. In the course of two years, if Rocky continues to show signs of other symptoms, it will only be then when he could be diagnosed. So at this point, because he only has a few symptoms, it's not enough to diagnose him. So here I was, left with a word, a disease, that we still could do nothing about... All I wanted was one answer... and not one doctor from two different hospitals could answer it.
The rheumatolgist continued, as we know he has the ulcerations on his bottom side and in his mouth (but at this time the mouth ulcers had reduced to half, but never the less has had the history of mouth ulcers in the past few months.), and he has the watery diarrhea. In some cases of Bahcets, some of these uclerations are due to ulcers in the intestinal track. She explains that we are going to have to give him a complete Colonoscopy. This is a test where a tube like camera/scope is inserted through the rectum, and is basically forced through your large and small intestines and takes pictures of the inside wall of the intestines. After the pictures are taken, then the tube like camera is pulled in the opposite direction and removed.
Rocky is schedule in two days to have the colonoscopy. Before receiving a complete colonoscopy one has to rid there body of any particles. A certain drink is given to him a couple times which was horrible tasting but he was forced to drink. He could barely stand it and almost vomited each time he had to drink it. As he continues to 'clean his insides' the day prior, they also put him on Lovenox which is another type of blood thinner but is given by injection in the belly area. The medication burns as he would tell me. The Lovnox only last about 12 hours in one's system so it's more manageable to take him off the blood thinner for any type of operation procedures, unlike Coumadin which lasts about two days in your system. Once his blood levels are down to what is acceptable for a surgery level, and his body is 'cleaned out' the next day he is rolled down into the OR, sedated, and the procedure begins.
About an hour later, I am told he's in recovery and I am able to see him. God love him, the first thing he says to me is, "Mommy I want my unner-wear? Where is my unner-wear...the nurse took my unner-wear." I told him not to worry, that I have his 'unner-wear' and as soon as we are back up in the room, I'll put them back on you.
We stayed in recovery for a little while, only because he had been on blood thinners, and they were monitoring him for any bleeding. They did explain that he will show signs of blood in his stool for a few days after this procedure, but that is normal.
We finally reach our room and Rocky is in severe pain on his left side. I had no idea why he was in so much pain, when they told me prior to going in for the colonoscopy that there is generally no pain with this procedure. And for him to complain, was something that he hardly ever did. I mean, he's had brain pressure of almost 60lbs, and all he says is "Mommy I have a headache". His pain tolerance is very high, but he's crying because the pain is so bad.
Shortly after we are settled, I am doing everything in my power to help alleviate this pain in his side. To no avail, I cannot make him comfortable and go to the nurse's desk to see if he can have some Tylenol or something. It was then, when the doctor who preformed the colonoscopy arrived. The first thing she explains to me is "Your son will be in tremendous pain for a day or two." She explained, during the procedure, his small intestine was so tiny that the scope became lodged in his intestine. The area where it was lodged, the intestine was shaped into an L and they couldn't get the scope in or out of the bend of the L. They had to tug and pull the scope to dislodged it for about 10 minutes. Eventually the scope did dislodge, but in that area that it was stuck in, it's very irritated and it's going to be very sore. This all made sense now on why he was so very sore. The doctor did prescribe some pain medication for him as well as warm compresses as he needed them. The pain lasted for a couple of days and I believe we went through two cases of heat compresses.
The results come back from the colonoscopy and his intestines were clear of any ulcerations. And as they stated, he bleed for about two days. However, the next day, they did resume the Lovenox blood thinners and even though he's bleeding, he did heal from the colonoscopy and he needed to be put back on the blood thinners as soon as possible.
After the second day and feeling much better as far as the pain from the colonoscopy and we take our first trip to the children's play area. Rocky was in HEAVEN. Even though he wasn't well at all, he could actually walk around, look at toys and see other children at play. He chooses to play in a sand box! He had a couple of IV's in his arm, and the nurses had to wrap his arm in a plastic bag before he could play. We sit there and make things out of sand, and he looks at me and says mommy, I don't feel good, can we go back to my room? I pick his tiny body up and carry him to our room while he lays his little head on my shoulder.
I asked him what was wrong, and he said his belly hurt and his head was starting to hurt again. I laid him in his bed, and I laid beside him and caressed his head until he fell asleep. As he lay there sleeping, I thought perhaps the trip to the play area may have been a bit too much and was hoping once he wakes he'll feel better.
A few hours later, he finally wakes because a nurse walks into our room with this little silver tray. All I saw on the tray was needles... I thought HOW MUCH MORE can this child take...... Rocky looks at the nurse, and the tray, rolls his head towards me and says "Mommy, where are those going?" I said, "Rocky, I don't know. Maybe in your arm, maybe in your tummy or maybe in your bumm." He takes a deep breath and sighs, looks over at the nurse and rolls towards me and offers his back-side to the nurse without uttering a word. This child had accepted what was coming to him with out questioning one single thing. Even the nurse witness the power of strength on what Rocky had. I began to cry, the nurse began to cry.... I thought.....for 4+ months, with every twist in our road, I've been asking...WHY HIM, WHY HIM....WHY ME... WHY HIM...Why does a child have to go through so much! I have top doctors and am really no further ahead then what I was months ago. WHY HIM??? But yet, I have this child who has accepted EVERY twist and turn, every needle that entered his body, every spinal tap he had to go through, EVERY headache he's ever had and never uttered one word of WHY ME. This entire journey thus far he has accepted and is continually walking it with out questioning. Am I to do the same? Am I loosing my faith? Is this little 6 year old hear on earth to teach me and the rest of the world what life is about? To accept your path that is laid before you?
It was at this moment, where as much as our life had been twisted, and turned, and altered and almost loosing my son... where I had vowed, this is our life, no, it's not like yours, but it is the path the Lord has given us. We are to walk this path and never ask WHY ME... from that moment on with the strength of my own son, I learned to never question WHY... I've learned to love and appreciate your children and life as if there is not going to be a tomorrow. I've been asking why for over 4 months...why... and still have no answers. If anyone is going to change this, it will be him, with some help from me. The Epiphany of becoming an advocate for my son's health began.
From this moment forward... I refuse to take, "I am not sure" for an answer. If a doctor doesn't know the answer on the spot when I ask, then they better hit the books and figure out what the answer is. NO ONE needs to live life in a manor as my son has. The pain and suffering this child has endured over the months, I wouldn't even wish on my worst enemy's child.
From this moment forward... if I don't understand one single word that a doctor is using. I interrupt and ask them to put that word in layman's terms to where I can understand. I then will repeat to the doctor if this is what he/she is explaining to me in my layman's terms. If they say no, that's not correct... I then will repeat the wording until I can understand 100% of what they are doing or about to do and why.
The weekend comes, and PCH offers if Rocky would like to visit the museum. Being as he loved dinosaurs he was thrilled to go! Dad came down along with his sister Karissa, and PCH arranged for us to have a van ride to the museum. Even though Rocky wasn't well, his headache seem to be coming back, he wanted to go so badly and with that we accepted the hospitals invitation. Rocky was very week, too weak to walk, so PCH provided a wheel chair along with a vomiting bag, wipes and water in the event he would become sick during the tour. We await the van in the lobby, and he's excited but I can tell he's not well at all... he rests his elbow on the wheelchair's arm and holds his head. I told him, we didn't need to go, that the museum will be there tomorrow, and we can try again tomorrow. He says 'Mommy, I really-really want to go, but I am afraid I am going to throw up once I get there." I told him that the nurses packed us up everything we may need in case you do get sick, and it's OK if you get sick... but if you really want to wait and try tomorrow, that's OK too. He insisted to make the trip that day and didn't want to wait til tomorrow.
The van picks us up, and he seemed to be holding his own. We slide the wheelchair out of the van, prepare him in the chair and we wheel off into the museum. PCH provided the four tickets for us as well. We arrived inside the museum, and it was overwhelming to see the huge dinosaur. We begin to wheel Rocky up so he can view the massive size of the dinosaur and he begins to say he feels sick, we move him to a more private area and he begins to vomit. PCH gave us the phone number of the driver and we called him immediately and within moments he was there to pick us up. I just explained to Rocky, it's OK, we'll come back another day when you're feeling better. He said OK...
With the vomiting, and the headache coming back more severely over the hours, Rocky's eyes are checked, and sure enough they detect pressure build up. They inform us that he'll have to have another spinal tap. It's getting late in the evening and visiting hours are coming to a close, and Bob and Karissa have to leave so Rocky and myself give our hugs and kisses and see dad and sis out the door...Rocky reminds Karissa to tell Luke and Bobby that he loved them and to tell them about the big dinosaur!
At this time, the staff prepares a scheduled time for Rocky to have his 19th spinal tap. I signed all the paper work and with in an hour the spinal tap is done. The normal procedure of laying flat for hours begins, but it was night time and I lay with him in his bed, caress his head and he falls asleep peacefully.
A few days pass, and Rocky actually improves.... he even awoke and said, wow mommy, I can't believe I don't have a headache at all....it's like all gone!!! Which to me only meant, because of how he expressed himself, told me in his own way, that he's had a headache everyday since this all started. Him being headache free for the first time in months.....he was a whole new child!
A few more days pass, and he continues to improve and we are discharged from PCH with instructions with continual follow up care with hematology in Youngstown and we're told that he'll be on blood thinners the rest of his life. Youngstown will continual to schedule follow up MRI's to keep an eye on the blood clots in the brain. We also leave, knowing he was positive to Anti Phospholipid Antibody and the suspicion of Bachets. Now knowing that he's positive to APS and this may be one of the causes of why he developed the blood clots in the brain. The placement of a shunt was opted out. They see how he's improved over the weeks stay when we were there and where he himself knew that the headache was no longer there at all. These were all signs of the clots dissolving and the spinal fluid is flowing better. Would he need another spinal tap down the road? I of course had a feeling he would. But looking at him and seeing all his color is back, he's eating fairly well, and babbling on as he did when he was a normal 6 year old, could it be possible we are past the worst part? However, I knew by now, not to ask these questions and have learned to live... one day at a time.
Please continue to Phase Six... The months that follow.
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