June 1, 2010
Neela ended up being discharged on Monday May 31... Memorial Day was nice to spend time with Bart and all of the kids together, since the last four days up until this day was Neela and I in the hospital. We had to be at the hospital on Tuesday June 1 at 7 am for Neela's first injection. I was a nervous wreck the whole way down to Iowa City. Bart and I prayed all the way down... to ourselves.. since we ended up having to drive two cars 'cause the docs didn't know if she was going to have to be admitted or not, since her past few weeks history with illness. We arrived two nurses, an anesthesiologist, and Neela's eye doctor were there asking questions and letting us know what was going to go on this morning... Yes Neela's eye doctors were there to check the pressures in both of her eyes, since she was status post cataract removal when she was three weeks of age. It is pretty routine for them to check her under general anesthesia every 6 months to a year. It just so happened to work out for the ophthalmology department to take advantage of Neela being asleep to do their part for her chart with them. I was told that it was going to take about two hours before hand from the nurses. We were asked by the anesthesiologist if we had any questions and we both said "No.' I think we just wanted to get things rolling for Neela and both of us (for our sanity). They anesthesiologist carried Neela away from Bart and I in a warm blanket, he was swift and blunt. I knew he had to be. Bart and I heard her crying for about 5 minutes as we walked out into the waiting area. We sat down and both kind of looked at each other and started to sob, yes... I'm sure Bart is going to be upset with me telling you this, but oh well. He apologized to me, and I said to him, "What, are you kidding me?"... "Bart you are entitled to break down every now and then, its completely normal. You are her father! You can't be "my rock" all of the time." We both got our composure back and went for a brief walk before going up to the lounge to eat something. We ended up taking a pager from the front desk so we would know when Neela needed us. About an hour went past and I saw the red lights and felt the vibration of the pager on the table beside both of us. I said, "Let's Go!" So we headed back down to the waiting area, and a receptionist said that Dr. Longmuir (Neela's eye doc) wanted to speak with us. I was a little relieved that one of the procedures was finished. She came into the room and told us that Neela's eyes look great and that the pressures were stable, meaning no glaucoma.. YEA! She said she was thrilled with how her vision is doing and how much she is progressing as far as growth in both of her eyes. She began to tell us that she thought that the cataract was caused from a disease Neela had in utero. She had began to tell us, that she has seen a lot of these cataracts from this fetal disease going strait into the retina, but was pleased with how Neela's just stopped a bit past the lens. I knew that God was in control on that one. He knew that we would be praying for... her eyes. :) About 15 minutes later, Dr. Richard Smith, Diane Burke, RN and Dr. Don Solomon came into our room and sat down like it was a rather nonprofessional meeting, it was very relaxing. They all said, "Went very well!" They began to tell us that Neela was injected in three areas of her cervicofacial area. They began to tell me they ran into two blood clots in her neck while aspirating those cysts. They said they would watch them, but thought they would dissolve within two weeks. The clots were caused by excessive trauma from all of the aspirations while she was hospitalized with the infections. They began to tell us a little bit about the drug ok-432... they told us that it was from Japan. It is has been used since 1990. They have had a lot of benefit from its use. Some kids see results with just one injection. Some kids may need up to four injections to get total relief. What the doctors did was they went into Neela's neck with needles. They aspirated to see if there was any fluid, in most cases there is in all of these LM cysts. It is either clear or blood tinged.. or yellow green if there is an infection present. Neela's was always a blood tinged. Anyways, back to the procedure. After aspirating, they inject the ok-432 into those cyst cavities. In about five to seven days it causes those walls in the cysts to collapse... meaning there will not allow any more lymph fluid to collect in those spaces, like Neela had. That is why her neck looked so large when she was sick. When someone is sick... lymph fluid rushes through the vessels to get to the blood stream to allow passage ... In Neela's case her lymph vessels were malformed, causing the lymph fluid to sit there since there were blockages in those vessels for the fluid to collect there. They are hoping in Neela's case that she will only need two of these injections to see results. I am hoping and praying within 6 weeks she will be down and I will be able to see her beautiful sweet little neck again. But if not, that's ok ... I know healing is on the way... AMEN ! Back to the meeting with the docs. They told us that this drug's side effects are extreme swelling in her neck and facial area, fever of 99 to 102, general achiness and fatigue. They told us that she will feel as if she has the flu. They told us the signs to watch for ... with breathing issues since the swelling could cut off her trachea. Listen for strider... looking for retraction of her rib cage, and blueness in her lips and nails. I was like.. "WHAT... I'm sure as heck not waiting until her lips and nails are blue to get her to the hospital." So they said that on day 3 to 5 will be the worst of these symptoms and effects from this drug. I was in complete panic when they told us what to watch for. I knew Neela depended on both Bart and I for getting oxygen to her body. ... Oh I don't think we've had that much responsibility since we've had any of these kiddos. Anyways, what needed to be done, we would do. We left and headed home... on our own and watched... listened. I even went on Utube to listen to strider breathing... oh yes I am obsessed, but I want to be prepared and ready for anything... Nothing is getting past me... even the doctor was getting drilled with my questions so bad that he told Bart... "Your wife is just trying to pin me down, isn't she?" Well when it comes to my kids and family... I will ask and do anything it takes for their health and safety... I think a couple of times I caught him off guard since I knew all about this disease from all of my research and learning... :) I guess that's pretty good, since he's the expert... :) I am relying on God full force these next few grueling days of waiting, listening, and watching... HE has Neela right where HE wants her... with her healing and comfort. HE is mighty and I trust in everything I have in me as a mother, a wife, a daughter and as a friend... that HE is Neela's CREATOR and knows exactly what is best for 'our family' and for our precious baby girl. I know one thing from this whole experience with Neela, she is gonna be one tough cookie with dealing with her four older brothers... she is going to be able to stand her own, with what all she's been through these past few months... Hang in there Neela...we are going to get to the end of all of this, soon, baby girl, soon..! We all love you and are incredibly astounded how brave and strong you are!!!
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