Kaitlyn's walk

I found out that I was pregnant with twins on Dec 16, 2005 which is my oldest son's birthday who was turning 16! I had great pregnancy and 2 very healthy babies Jacob at 5'14oz and Kaitlyn at 4' 14 oz. We all came home together even after delivering 5 1/2 weeks early. Kaitlyn was a very healthy baby except for random nosebleeds and constant bruising as a toddler, she truly looked like we had beaten her! I had always had nosebleeds and bad bruising and doctors always told my mom I was severely anemic and not much to be done. By the time Kaitlyn's 3rd birthday came was the beginning of her illnesses. She started off with sinus infections and fluid behind her ears constantly, we seemed to either be on an antibiotic or a steroid or both for over 9 months straight. At the age of 4 the doctors started talking about tubes in the ears to relieve the pressure. at age 4 and 1/2 we decided enough was enough and she needed some relief, we scheduled for tubes to be placed in her ears. The surgery was quick and she only had minor bleeding, remind you we still did not have dx yet! The Ent said at her 3 week and 6 week post op that the fluid in the ears looked better, but the swelling around the tubes and the Eustachian tubes were still significant. So, again we treated with steroids and antibiotics. We went another 6 months and still not seeing whole lot improvement and now we were battling with strep throat constantly and swollen glands, it seemed like she was always sick and still having nosebleeds and bruising even on the backs of her arms and buttocks! The constant sicknesses and being on antibiotics were too much for any little body to endure and we started back with reflux and stomach issues. The Ent through Children's said we need to reinsert the tubes to get them in better position with the constant fluid and we probably should take out her adenoids and tonsils at the same time. Now, my mom guard went up and my husband and I tried asking doctors about the significant amount of bruising for toddler, nosebleeds and my history with bleeding after surgery was this safe? We were both assured that all blood tests that were done (cbc) is all were normal except for high neutrophils and white count from being sick all the time and there was nothing to worry about!

The surgery was scheduled at age 4 1/2 and it was done at outpatient Children's Hospital. After the procedure she was extremely hoarse from having her tonsils and adenoids removed which is normal, but she just didn't seem herself (mom guard again). My husband and I took her home after staying extra 4 hours as the nurses didn't feel comfortable with all the bleeding in her throat and spitting up. Once again as we know our children we should have insisted on staying, but we went home. It didn't take long for her condition to worsen and after one night of her crying, bleeding, choking and vomiting blood , I took her back to the ER. The ER doctor on call took one look at her and now running 104 temp we were admitted immediately. She had already aspirated blood into her lungs from bleeding so much and it took several days of iv antibiotics and respiratory treatments to get her well. We were told she had bacterial pneumonia from aspirating the blood into her lungs and it was a good thing we brought her back!

So, now I am fuming it is her 5th birthday and we are finally going to see a hematologist at Children's Hematology Clinic. The story we all face is blood test after blood test and continual of telling the symptoms she has experienced since birth. We were diagnosed fairly quickly with (VWB) VonWillebrannd disease type 1severe , even though she bleeds more like type 3. The hematologist ordered the ddavp challenge and she failed and her numbers dropped significantly lower during the test, which means she can not use the nasal spray Stimate and she had violent reaction to Amicar, another med to treat low vwb factor levels. We immediately started having a home nurse come to the house once a week and administer Humate-P by iv and this was torture as Kaitlyn also inherited from me no good veins, so sometimes it could take 4 sticks to get a vein! Once the hematologist saw the slight difference in the amount of nosebleeds and fewer bad bruises, we decided we need to go up to 2x week prophy which meant more sticks! At this time, Kaitlyn was about to start school; kindergarten the most exciting year for kids and my poor baby girl was being poked and prodded all the time. We also noticed that she developed not long after the tonsils and adenoid surgery a large lymph node growing in her neck and she continued to stay sick, except now it was all sinus related and the nosebleeds were severe! When I say severe, have you ever woke up in the middle of the night to screams and finding your child laying in blood and covered on her clothes, not good! The hematologist sent us to immune disorder specialist to be sure there was no underlying reason for enlarged lymph node Yes, they used the cancer word! As soon as we were told there was no cancer, thank God the Ent was to schedule surgery for the removal of the node and hematology would be placing medi port for easy access to giving the meds. We had surgery right as school started bummer she absolutely loves school and was so disappointed that she was going to miss the beginning of school. Ok, so the port is in and the node was benign and out. Can we get on with our lives yet? No, the Ent checkup showed a hole in the right ear and it was causing pressure and balance issues for her. Soon after this, we again were going into surgery, simple myoringoplasty, just small patch in the eardrum and for this we had to be hospitalized for 3 days for bleeding. At the 4 month check up the hole had returned with a vengeance and it had ruptured the eardrum, there was pain, pressure and drainage, so immediately we are told that our baby girl would need a tympanoplasty to try and close the hole. This is very evasive procedure with the ear being completely cut in the back and lots of bleeding! So, again we are now halfway through Kindergarten right after Christmas and stay in the hospital for 4 days, home in bed with extreme pain for the first few days and then no activities that includes jumping, bouncing, running etc. So, now my baby girl can't participate in Upwards Cheer, dance, pe at school or even recess. Thankfully, we have an awesome elementary school and staff and they took excellent care of her when she returned with her colorful bandannas to cover the incision to prevent bleeding and infection, while we are infusing her 2x day and then 1x day for 2 weeks. So, we made it through another hurdle and I have to tell you if it wasn't for our church family and friends we couldn't have survived what we have gone through and God! Ok, next we go to our 3 month post op appt things don't look good still swelling and fluid. We decide to wait another 2 months and see if it heals more and Kaitlyn is wearing a device at school to help the sound in her good ear to balance what she can't hear in the right ear. At our 5 month check up the day before Kaitlyn's Sunday School teacher brings her to my husband and I concerned that her  left ear the GOOD one is hurting and blood was coming out of it! Yikes, don't like that we go to Ent next day and the Dr. says there is something in her ear, now at this point Kaitlyn is so tired of needles and people poking in her ear she became very emotional and mom trying to keep things together for her. The Dr. brings in a nurse and we know that's not good and explains we are going to use small vacuum device to suck out whatever this white thing is in her ear? Now, with every surgery there is no water or anything getting near or inside the ear! He pulls out a plastic like cap that very much resembles the cap that was used 5 months ago in surgery and how in the world did it get into the LEFT ear? We finish with that discussion being totally blown off as to my daughter must have put this in her when she was playing, Really? Then, once again we get the bad news of there is yet another new hole higher up on the eardrum and we will need to patch it, now it is too soon to perform another tympanoplasty;so we will just do the simple patch. Simple for who this again means a hospital stay and can I tell you with good health insurance we are still in the thousands of debt for medical bills. We decide to wait til the end of summer and recheck and of course the hole has again grown and there is slight hearing loss even with the device used at school. We are now in 1st grade and going to have another surgery, myringoplasty and be given extra factor and be in hospital for 2 days. We are now at our 4 week check up and things are questionable, but not bad! The doctor said lets recheck after the holidays and see where we are at. There is some good news to all of this all of Kaitlyn's bizarre sinus infections, colds and illnesses stopped right after the lymph node was removed; Praise God for that. At the next check up the Ent said things look ok, we will recheck in 6 months. Now, I had just told him that the school teachers, daycare, family and Kaitlyn are noticing much more hearing issues in the last 2 months than ever before and she hears ringing and feels pressure. That answer would not fly with this mama, we were going to get second opinion. I was able with the help of a friend to obtain an appt with one of the best Ent specialist in the area within 2 weeks that was a GOD thing! The Dr examined Kaitlyn's ear and within 3 minutes was giving me that dreaded look I didn't want to face; even though in my heart I knew we still had troubles. The eardrum has one of the cyst like masses on the eardrum and sitting against the ear canal and if this isn't removed soon it can cause hearing loss if it evades the bone! He also said there is a larger hole than the notes you provided from past surgeries and this can only be done with yet another tympanoplasty!  We are now waiting for surgery date and this time we will stay in hospital 4 days or until bleeding stops and home from school 2 weeks and no playing or sports for 2 months! This is so hard on a very active little girl, but she is such a trooper and will make it through! Thank you for letting me share and to all of you that don't know us Kaitlyn has twin brother Jacob and 2 older grown brothers Chris and Joseph who have been incredible with her through all of this and her daddy!  I will post another update after we get the date for surgery as we welcome any and all prayers.