http://www3.caringbridge.org/sc/blakester
Hello!! This is our first time one here.
I started this blog so I can keep others informed about the Life & Adventures of My son, Blake. He is a current Medical Mystery & has so many adventures he keeps himself busy as well as being a total encouragement to the family!!!
Here a small synopsis of Blake's life.......
Blake was born Jan. 31, 1992. He was not supposed to arrive until mid May 1992. I was one sick lady. I developed pre-eclampsia at 20 weeks. I was placed in the hospital at 22 weeks. They did weekly ultra sounds to see that my baby was growing properly. They discovered that my placenta was NOT working. Sooooo, Blake stopped growing at 21 weeks. He was born when I developed blood clots that went to my lungs making it impossible for Blake to get any air. We tried to shoot for Feb. 3, 1992. But, by then it may have been too late! So at 7:43am on Jan. 31, 1992 Blake was born at 26 weeks. He weighed a "whopping" 1 lb. 6 oz. He was 12 & 1/2 ins. long. His dad could run his wedding band (size 10 men's) up and down his little legs. The biggest thing on this child were his feet and his head.
Blake needed immediate ventilation for breathing. He used this method of breathing for the first 10 & 1/2 weeks. After the removal of the vent, he remained on O2 until he was 18 mos. of age. Blake came home at mos. weighing in at 9lbs. oz. he was 17 ins. long.
Blake had many problems in the NICU. He required 21 blood transfusions. He went through 7 blood infections not to mention 4 bouts of pneumonia. Once when a parent came to see her sick child in the unit, she brought along the Chicken Pox. Lucky for us Blake was already in isolation so it was NOT passed to him. It just made his stay in the isolation room longer because several of the babies did contract the CP. 2 died from them!!!
When Blake was 15 months old he was featured in a story that was published by the local hospital. He was dubbed the smallest to "Graduate" from the NICU at this hospital (really it was that he was the smallest "white boy" to graduate but due to political reasons the worded it "smallest Male"). But to this day the NICU staff lovingly have him dubbed "Peanut".
Lets fast forward to 3 yrs. of age. We placed Blake in a school program that was especially for children that were at great risk for developmental delays due to things like prematurity, Cerebral Palsy and the such. Blake was a very bright boy at 3. He could read small things such as dog, cat and most 3 letter words. He could read his name and address and tell you his telephone #. But Blake also had some Autistic tendencies. He repeated every thing 100 times, he lined objects up and got upset when you rearranged things in the rooms. He was not one to take lightly to change. He also had a lot of feeding issues and his lungs were still very undeveloped. He stayed sick as he stayed in the class with these other children.
Right after Blake turned 3 we noticed that his breathing was becoming more problematic for him. He was sent to an allergist that found him to be allergic to everything. Dust, mold, dogs, cats, milk, wheat, grass, trees. If it grew outside he was allergic. But Blake was too young to start "allergy shots." So he was placed on nebulizer treatments and sent to have x-rays of his adenoids. Yep they needed to be removed. Well, while the ENT was in there he decided to have the tonsils removed. He said he could not even see how the child was breathing at all. He held up his hands and said that Blake's tonsils and adenoids were that grossly enlarged!
Well we thought our troubles were over. Nope. Blake was still having feeding issues. He would eat then throw up. We knew he was on "reflux" watch when in the NICU. But no one ever told us what "reflux" was, so why worry about that, right? Blake would actually vomit more than he actually took in. Therefore he was NOT growing properly. He still had breathing issues to contend with. He was doing neb. treatments every 4 hrs. around the clock. Not to mention staying sick.
When Blake was 3 &1/2 yrs. old we asked for a 2nd opinion. We were tired of the issues at hand and Blake behavior was really getting out of hand. I believed all along it was because he was tired of being sick and not able to tell us what was bothering him (he still had/has some speech issues that we were told had to do with the reflux). When I asked for the 2nd (really 3rd or 4th) I clearly stated I wanted the best. Don't send us to every Tom, Dick, or Harry with the pre title "DR.". Well, when we walked into this Pulmonologist's office that was 2 hrs. away, we actually got what we were looking for. One she was (and still is) a Christian, and she dealt with Blake in the way a Dr. should. She talked to Him as if he were the most important person around!!! (it is still like that today with her. She is actually Blake's "girlfriend" and NO ONE comes before her!!!)
She took one look at this child commented about how small he was even for an EX-preemie. She sent him for CT Scans of the lungs and sinuses. In the same day told us that he is being under or not treated for reflux disease. She showed us the scans of his lungs then the scans of normal lungs. It was like "OH MY G--!!" How did this happen? He had 20 cysts in the right lung and 35 in the left. He had only 10orking lung tissue. and he was loaded with fluid. She immediately started him on meds for GERD and placed him in the hospital to run some antibiotics IV for 1 week. Since were so far away she arranged for us to stay at the RMH while Blake was inpatient. After being on the anti reflux meds for 3 mos. there was no significant change in his health and he all but stopped eating. In Nov. of 1995, Blake had what is called a Nissen Fundoplication (some call it a "stomach wrap") and a feeding tube placed. He also had some immune blood work done. This is when we first hear the word "Hypogammaglobulinemia" and "hypocomplimentemia". Blake's immune system was not functioning properly. But since he was only 3, it was considered "transient" meaning he could out grow the immune issues in time. For now just keep him as germ free as possible. While in for the NF, Blake developed cellulitis at the sit where they had placed the epidural for pain meds and at the site where the Gtube was and his incision site. Sooooo, to make a long story shot (if possible) he stayed in the hospital for 4 weeks.
Now, let see...... when Blake was 5 he started school in a private Christian School. We choose this option so that they would help us enhance what he was being taught at home. Well that was when he would be in school. This is where we found that Blake's immune system was still in trouble. he was at the hospital more than he was in class. What made it rough is he was in the PM K-5 and his teacher just did not understand why it was important to keep his appts. with the Dr. which were 2 hr. away. It was also at this time that Blake received a diagnosis(DX) of Sucrase-Isomaltase Diff. What in the world is this? Well, we were told it was an intestinal enzyme diff. We were told to eliminate all sugar and starch from his diet. In other words we were starving him! The teacher really gave us a fit about this. She would go to the principal complaining about how small Blake was and that she thought we were starving the child and the principal informed us of this. We told him that Blake's Dr. offered to set up a meeting about the situation with the school but the Principal and teacher did NOT see a need for this. It was at this time also Blake was DX'ed with ADHD (severe) the teacher did not want us to give Blake the med for this. Sooooo, when the principal was observing the class, he noticed Blake's inability to focus on the things at hand. He called a parent conference right before Christmas. he explained that Blake was really behind as far as developmental skills but too advance in other areas to be placed in the K-4 program (this is where he felt Blake needed to be all along until the teacher realized Blake's ability to read and how quick he did catch on) But we were willing to place him in K-4 at the beginning of the new year. Instead we left him in the K-5 class and he WAS stared on the med for ADHD. Let me tell you when the child was started on the meds. he was a totally different child. The teacher did not know we had done this. But we did tell the principal. He was totally shocked at how well Blake was doing and all the things he was accomplishing since being on the meds.
When the new school year started, There was a new principal at the school. It was at this time the Pulmo. was encouraging us to take Blake out of school so he could get well. We decided to homeschool Blake and let him do K-5 and 1st grade at home. The principal agreed to place Blake on inactive leave until he could come back if at all in this school year (he did not return this year at all, he spent most of the year in the hospital). At this time it was agreed by ALL Drs. tending to Blake that we needed to get to the bottom of his health issues. Why was he having a hard time gaining weight? Why could we not get his breathing issues and feeding problems under control? His Behavior at this time was very prominent for Autism. He had major problems with copying things from a blackboard to paper. His ears were a total mess he was already on his 7th set of ear ventilation tubes (AKA P.E. tubes) He was unable to take any oral antibiotics all of them were being given via port in his chest. He had one bad infection after another (but at this time we had an immunologist that told us to not let anyone tell us that Blake's immune system was a problem because she felt that it was NOT. but she was continually giving him allergy shots and going up on the doses even when he had some awful reactions that actually did place him in the hospital. ..... we later found out different about the immune system of Blake and we learned from other parents what this Dr. had put their children through) that the pulom. sent Blake to DUKE for second (and 3/4 opinions).
At DUKE we learned that Blake did NOT have the enzyme def. he was DX'ed with the year before instead it was actually pancreatic enzyme he lacked. Instead he IS unable to digest protein. He was immediate stared on replacement enzymes (he is still taking these. The usually get increased once a year). The immune system was investigated and proven that Blake actually DOES have an antibody diff. He has what is called Common Variable Immunodificiency(CVID) with complete T-Cell dysfunction. In other words Blake does not make the fighter cells to ward off any type of infection. He also does not make the antibodies that line the mucosal areas of his body. Soooo, here is where the intestinal, lung sinus, and anything in his body is lined with mucus (i.e...lungs, nose, stomach, ears etc) can become easily infected. IN 2006 THIS WAS CHANGED TO A MORE SEVER FORM OF CVID.....HE NOW IS DX'ED WITH SEVERE COMBINED IMMUNODEFICIENCY!! Well, what do we do for this. Blake is infused with life saving antibodies called immmunoglbulin through an IV this the name IVIG. They tried to go every 4 weeks (28days) but Blake had to prove to be stubborn. We then went to every 3 weeks. Nope not enough. Blake started going every 2 weeks. At first it as thought he was not a real candidate for IVIG because of how sick he was still staying. I mean his ears drained constantly and he stayed congested even while on the antibiotics. He even lost 7 ports (central lines) in the meantime from the constant accessing with a needle (non coring needle used to gain access without having to stick Blake with IV's via hand arm sooooo many times. NOW, Blake is on Sub-Q. he has 4 needles inserted in the subcutenous tissue....kinda like needles diabetics use. But they are inplace for 2 hrs. a week......Less side effects & can actually be done AT HOME!!!
In 2000, Blake had to be hospitalize due to the real prospect of losing port #5. He was having a hard time keeping the things. He having them clot off deeming them unusable Soooo, one of his pediatrician ordered blood work to find out why this was happening. The only reason for this testing was his pulmo. wanted to know WHY? as did Mom & dad. The testing was done in Oct 2000. In late Nov. while visiting the Pediatrician, we were giving the news. Blake has what is called Factor V Lieden, MTHR Mutation, G-A Mutations as well as Thrombophelia Deffects. He was recently given the DX of Genetic Prothrombin Deffect. This means Blake has a rare blood disorder that caused his liver to not make Heparin. Heparin is a natural protein enzyme that your body produces to help your blood flow evenly. But in Blake's case he DOES NOT hake heparin therefore his body is filled with clots. It was that Blake would have to have this replaced "manually," he was started on a drug called LOVENOX. This is a low molecular Heparin. This is given twice daily via Subcute shots (OUCH!!!). What this also means: Blaek has a 142% cance of having a stroke or clot related heart attack. His Aunnt Amy (mom's side) was also DX'ed with this after she had a heart attack at age 28 & has to have a pacemaker/debilualtor permanently in place!!!
In Dec of 2000 Blake also developed a severe bone infection in the temporal bone (this is at the base of your skull next to your brain)! Here is where Blake really started to lose his hearing in the left ear. He had to have what is called a Mastoidectomy. Then he had to have a more extensive surgery on the ear where they take our the ear canal wall to open up the mastoid so they can get air to the ear to keep it from getting infection. He spent 12 weeks in the hospital for this and breathing issues (Plus he lost another port while in for this, yep, that was #6) Well he still gets infections there, he is currently on his 24th tube for ventilation in the left ear.
During the year of 1999 we learned that Blake does have Asperger's Syndrome (high functioning Autism) along with OCD & ODD. What this means is he needs a lot of work done with him to help him stay focus with the tasks at hand for the moment. This also tells us that there is a reason for all the behavior issues we deal with from him. In 2003 this was changed by a developmental Pediatrican & Blake's regular Pediatrician to Moderate Autism.
Right now, Blake is having a lot of problems with the reflux. He had a bronscopy done in Jan and they found that he had green gastric fluids bubbling in the esophagus. And this was after he had fasted since 8:00 the nite before the Bronc. It was proven that he was actually refluxing into the lungs and in the ear!!! Then in April, he got a blood infection that caused him to loose his 7th central line. Now we are waiting on the pulmo to set Blake up for surgery to have the reflux repaired. They are thinking this is why his Pulmonary Functions (PFT's) are sooooo horrible. He is using less than 40% lung capacity and even with the neb. treatment, he is not able to reverse the pft's like he usually is able to do so.Blake has had this surgery. It was finally agreed that if we did not redo the Nissen, he would wind up needing a lung transplant!!! It occurred Nov. 13, 2005
Due to all of Blake's health issues, he is on COMPLETE homebound. Meaning we are at home (or hospital) more than most people. He gets SUB-Q infusions every week....13 grams. With this new method, there is NO need for a central line!!! The only time he gets IV's now is for blood work or his Aredia(osteoporosis. His homehealth nurse has been the most wonderful person Blake knows when it comes to this.
Blake has a PCA(personal Care Aide) that attends to him & his needs 4 days a week for 5 hrs a day!!! This is suppose to give mom a break & get other house work & chores done.....doen't always happen. She is a wonderful asset to our team & we finally found one who can understand the Autistic part of Blake!!!
Blake is a fun loving child when he is not messed with from a medical stand point of view. He is now homebound indefinitely. He has goats that we raise (just to keep us from having to cut the grass!!!). Most of them are named after someone that Blake thins very highly off. Right now we are tending to 30 goats (12 are babies). Blake loves to sit and read to them. They actually do go and sit around him as he reads to them. May just be coincidence, but Blake doesn't seem to think so!
Blake has never nor will he ever be a burden to us. He is constantly learning every day about things and how to make it all work to his advantage. When I am asked "How do you do it" I tell every one, "With lots of prayers love and God!!" I also consider Blake My ADVENTURE of a life time, You never know what is in store from day to day or for that matter moment to moment.
I am sorry that this is soooooooo long. I felt that If I were to tell you about anything, I needed to tell all. Thank You for taking the time to read this story.
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Hi to EVERYONE!!!
