May 27, 2009

Neela's Ongoing Troubles with her LM...

Well here I am again... in the hospital with Neela. She was doing very good for a few days since being discharged last Saturday May 22... It hit her like a ton of bricks, Wednesday night at Clint's baseball game... Bart sensed that she didn't look quite right... I felt her head and not to our surprise felt "warm". I went home with her took her temp sure enough it was 101.0. Exactly not what you want when you've had your child on antibiotics for over a week. She was sluggish and not comfortable. Awoke Thursday am, in my gut she was headed back down to Iowa City to see the ENT guys. I called and asked what they wanted to do with her fever spiking up again. Without any hesitation they said, "bring her in". I had Tate and Beau with me that day, so it was grueling waiting it out to see the doctor when we arrived there. They were tired of these doctor visits, just like their baby sister, Neela. Doctor came in to see her in the exam room, I could tell the look on his face... "ADMIT". I knew it. He even put some numbing gel on her neck in two places so they could go in , again, and aspirate fluid from two places in her neck. They needed to culture it ..to see exactly where it is coming from. So after three hours at the hospital, Bart arrived, ALLELUIA ! (help with the wild boys, that wanted to get the heck out of that hospital). They got Neela settled into a room on the Peds Floor, (our home, away from home) sad to say... The nurse right away came and got her to take her to the treatment room to start her IV and to have the ENT docs aspirate her neck. After a grueling hour and a half... they withdrew 60 cc of fluid off her neck and put her IV in ... between that time...could hear her screams of pain... it was heart wrenching and horrible to hear... I felt as if someone was shoving a knife in my chest and pushing it in a little deeper the higher her cries got... She was pretty happy most of the evening, after all of the needles...... I think she felt better having that extra fluid and pressure relieved in her neck. She slept very well that night, awoke to medical students poking and prodding around the room at 5:45 am. I am beginning to realize to go to bed early at this hospital due to doctors making rounds very early. Ughh... I'm not a morning person, ask Bart. The docs had told me that her white blood count on admission on Wednesday was 21,000.. which is high... indicating an infection somewhere... Docs were concerned with these numbers and not really knowing if the infection was related to her LM or if she had an onset of pneumonia... (which was ruled out, had a chest xray to confirm) AMEN!... don't need to add that to her medical history. They were going to call in Infectious Control... meaning pediatric docs that specialize in infections. So met with that doctor, he wasn't concerned with Neela... he was going to check and see if a few of those bacteria from her LM snuck into her blood stream... but not wanting to think about that. We will see 'bout that possibly tomorrow. (Sat.) The pediatrician stated that he thought the infection was just a stubborn LM infection that didn't want to be treated with oral antibiotics. So the plan is for Neela to have the sclerosing therapy (ok-432) injections on Tuesday June 1. Doctors are wanting to keep her here 'til then, to make sure she is healthy... But also heard tonight that the ENT doc (Dr. Soloman) that is treating her and has been treating her through the past three infections in two months... is battling it out with Dr. Smith, her LM doctor.. about even doing the injection as scheduled, since the area has been aggravated so much. Dr Soloman has seen the worst and worst with Neela's pain and discomfort. He is thinking 'if we don't do these injections as planned.. then Neela will continue to fight this ongoing circle of infections 'til she does receive it'. Dr. Smith is in Spain as of right now, but they are going to discuss it tomorrow whether or not to receive the treatment... hope this all makes sense, its even confusing to me at times. As I look out Neela's hopsital room window, I see others move about and cars drive by... its so hard seeing the world keep "going" as our baby girl sits here in pain and faces the unknowns in the future. I need to hold onto that faith that is keeping me from going down the wrong path in life... God, my strength ... my refuge... Neela's healer... Please continue to pray for the doctors, that they make the right decision for Neela in regards to her healing and treatment this weekend... ! I miss my family terribly being together... this is just not our family... We are inseparable. We do everything together ! Bart took all the kids camping this weekend with the Driscolls... like we had anticipated all of us doing to "relax" this upcoming weekend. Oh how I long to be fighting mosquitoes and kids throwing punches and even the tattling. Neela misses smiling at her wild brothers and silly daddy ! Hoping and longing to be home before the upcoming Memorial Holiday. Thanks everyone for their kind words and prayers...:)

Neela's 2nd LM Infection.. Or So We Thought...

May 22, 2010

Still at the hospital... hopefully going home today. Miss my Bart, my husband, and my six other amazing little people at home. Neela ended up doing worse over the last day...the area right next to her right ear was protruding and ever so slightly reddening. She was uncomfortable still with the pain meds, and 2 antibiotics. So, on Friday morning, Neela had a medical student, five resident doctors, and two fellows visit her that am. They were all concerned with the inflammation and swelling not responding to any of the IV meds they had put her on in the last 24 hours. The ENT resident that admitted her on Wednesday, stated "Umm... we definitely need to do something about that, I don't like the looks of that." I thought to myself, so much for getting out of here today... we are a long haul from that. A few hours later the ENT "fellow" doctor came in and said that he had been conversing with Dr. Smith, (since he was out of town) and came up with a plan that they needed to aspirate some this fluid in her top structure of her LM, that is giving her all of the probs. I was okay with that, until they told me that they would have her awake. My first instinct was, 'Neela won't even let me kiss her on that part of her face, little lone having a pretty good size gauge needle going in there.' I trusted the doctors decisions regardless. It was a pretty much a long afternoon since all of the ENTs were in surgery that day. In between time, my parents had been keeping Neela and I company with bringing me meals... magazines... toys for Neela... whatever we needed.. ( TY mom and dad we appreciated this so much) As I was eating my late lunch at 3 pm... I heard a strange but familiar voice outside the door... it was Bart. He came in to greet myself, my parents and of course his "little woman", as he calls her. He said that he needed to use the restroom out in the hallway and wanted me to show him where it was.. So I did, and to my surprise, in the waiting room by the restrooms there were my six long waited for, missed kids. I say its the other 'crew' to our ever so amazing ship. Our "ship" really doesn't sail without its crew... 'our family' is tightly bonded like glue. I could tell Clint wasn't the same, as to all of this unknown chaos. He missed his little sister and of course 'me'. I wouldn't have thought since I am with 'him' constantly. I figured he'd be like, finally that woman is gone, so we can do what we pretty much want. (Not gonna fly to well with Gram Judy watching him ) Clint was better by the end of our visit though. In this time, Neela's doctors were ready for her aspiration of her 'abscess' (is what they kept calling it)... The resident told me that Neela probably wasn't going to like being held down, and to feel the pressure from the needle. They did give her some numbing gel on the skin, so she wouldn't feel the poke so much. I handed Neela to the nurse and told her to 'take care of Neela for us'... :) We were all pretty much in agony waiting and not wanting to hear her scream. It was about five minutes and I heard one of the nurses say, "Hi.. Neela!" I quickly told Bart... she's done. Went back out into the hall, and saw she was okay, but had huge crocodile tears in her eyes. The doctors came up to us and told us that in the 'abscess' part of her top structure of her LM.. the fluid they drew up was pretty clear... and that they drew up 40 cc of brownish, blood tinged fluid out of her bottom structure LM in her neck. They preceded to tell me that it wasn't pus or greenish in anyway. Which was not a relief of me... I really wish it would have been, then they would have cultured it, and would have sensitized it to antibiotics to find the "exact" one to take care of all of this. The doctors told us that Neela's LM had been aggravated and inflamed, which caused all of the swelling and redness. They said they will still culture it, and keep her on antibiotics. They continued to say that she will be very uncomfortable until she is better, and there is nothing they can do for that, except continue with her every four hours pain med. Neela just needed 'time' to heal and get better. She needed to get home to her normal routine and get lots of sleep in her own bed. She has been a little trooper through all of this.. She is such a inspiration to me, myself and I. She is strong willed and probably will be her whole entire life. I am happy with her care with her doctors at the University of Iowa Hospitals and Clinics.... they are passionate and wonderful at what they do everyday. I am blessed that its only an hour and a half from my front door. God put us in northeastern Iowa for a reason and I think being this close is one of 'em. Please continue with your flowing prayers for Neela...as to her journey with her LM is not even close to being over. Her injections are kind of iffy right now, since she is on such a high dose of antibiotics for the healing and recovery of her structure... Please pray that things subside with all of this, and that she 'will' be able to keep that appointment for the ok-432 injection to take place. Thank You... for following "Our Faith... Our Family".... will keep you updated as needed. God Bless !

Thank you to my partner... Bart for enduring this emotional time with Neela and I being apart from you.. I know it must have been hard for you to cont to work, while we didn't know what was going to unravel with Neela's illness. We are the 'couple' that can get through this turmoil with our beloved and sweet baby girl... We are both getting strong physically, emotionally and last but not least spiritually. ;)

Thank you to those who brought over meals .. Thank You for my sweet, ever so faithful mother in law who is always there right when we need her... even if its just a matter of hours that she needs to be at our house to watch the kiddos. We can always count on her ! Love you Judy !

Thank you to my dear friend Kelly, our friendship still amazes me... thanks for staying and helping me through a night at the hospital with Neela... luv ya!

Thank you to my parents who drove to stay in Iowa City to comfort Neela and I, since we were alone. I love you guys and your continued support and encouragement that Neela is gonna be okay :)

Thanks to everyone.. our family, friends, coworkers, and church congregation, and pastor... praying and praying for Neela's start to this journey.... We love all of you !

Neela's 2nd LM Infection

May 19 Neela's Hospitalization


Well here I am again... just a few days after my last post. Was hoping and praying I wasn't going to be blogging until June 1. Neela ended up not getting any better from Monday May 17th. On the morning of May 19, I noticed that Neela's swelling was increasing along her temple. It was rock hard to the touch, and was flaming with red streaks... pretty good indication of the infection not giving up. I called her ENT doc in IA CITY... spoke with the nurse, and she immediately scheduled in to see the clinic doc that day. We had to be there at 3:00.. so it left me some time to get my schedule and plans made for the kids. We got looked at by one of the ENT docs and he had "concern" written all over his face. He poked and prodded her ever so tender face. He looked into her mouth and said, "I need to check her airway". So I chose to wait in the waiting area, since I didn't want to see Neela in discomfort from the scope. He wasn't back there long with her. He came out and told me that the airway looked completely fine, (whew what a relief). Cross that obstacle off. The bad part was when Neela was crying during the scope, her hard contact lens went flying somewhere that I couldn't find. So off to the Ophthalmology Clinic to let her eye doc know that she is without a contact lens. So went and ordered a new one, which would be here by Friday... which in my gut told me we'd still be at the hospital as inpatient. They told me that Neela has a stubborn infection and that she needed to be admitted for fluids and IV antibiotics. At this point I was fine with his advice, because I saw and heard her suffer for about 24 hours now. I was a little apprehensive to the overnight stay since Bart was at home with the kids, along with my mother in law Judy.. (thanks Judy). I was alone and had to be strong for this sick little baby. A few hours later as we got settled into our room, ended up finding out that a dear friend of mine, named Kelly was on her way down to spend the night with Neela and I. She had a rough and long night, so I'm grateful that she did stay. She developed a bit of a fever, and she would wimper all night long... can't believe my dear friend endured all of this when she could be getting a peaceful night of sleep at home. Thanks A LOT for being an amazing friend to me and our family Kelly ! The next day ( May 20) she didn't really change much, still pretty "out of it"... the drugs probably didn't help with that feeling. I knew she was in a LOT of pain throughout much of the day, and the hardest thing was watching her, and not being able to console or help her in anyway. I thought we had a duty to our children to help, comfort, and take that pain away instantly... I guess thats not always the case. As the afternoon progressed... Neela developed more swelling into her neck now... it is all connected, and it is all rock hard and infected. The doctors put Neela on another antibiotic along with the original one. She is on pain meds every four hours. Now we just wait and wait 'til we start seeing a smiling (two teeth) grin. Its nice to be in a place where they actually have been through her condition, and know exactly how to treat it. Keep Neela in your prayers for comfort, and her healing... Thank You. God Bless Neela in her start to this journey. May HE continue to guide our family, and provide her docs with wisdom, and the prevailing steps for her ultimate healing and comfort. Thank You to my parents for driving over 3 1/2 hours to be with her and I, you two always know the right words to say to direct me into a positive perspective. Thank You to Bart and the kids for enduring this long healing process with Neela, you are ALL an amazing support group ! I LOVE YOU.

May 17 th

Yes another trip to the doctor tonight. Neela had been doing very well the last few days since her febrile seizure and fevers. This evening Bart noticed lots of swelling under and around her right ear... LOTs more than before. It was hot, streaky and hard as a rock. She would wince when we touched it. Got back on the phone with her ENT doc from Ia City. He stated that she needed to be seen to have it be evaluated since it is probably an infection... (really nothing new). So went up to West Union this evening... left at 7 pm... waited for about two hours to be seen. Finally got in and it was a PA that looked at her... he began to say, "Now just in the last few days this large area in her neck has gotten this big?" (Ughh.. here we go again) AWARENESS... AWARENESS... needs to be put in full force with this healthcare world. I began to show him her records from this past weekend and told him exactly what it was.. a Lymphatic Malformation. He began to state the words a few times so I think he got the birth defect down. :) I told him, "You should go and read up on it, it would be very interesting to you I think. " Don't think he was very happy 'bout that. Oh well... my main goal is to let every doctor, PA, nurse or stranger know what this rare birth defect is. :) Neela got some more antibiotics.. and yes another antibiotic shot to get this cleared up. So in the last few days Neela has had two catheter urines, three venipuncture lab draws, a chest xray and two shots of Rocephin in her ever so sore thighs. She is such a trooper and just is along for this busy and chaotic part of her life. We love her smile, and two sweet precious teeth on the bottom. :) She is an inspiration to us... just deal with this and move on... She is gonna change a lot of lives in just living her own. Bart and I are starting to grow a bit weary and tired with these past few days... we just keep looking at eachother and say, "This could be so much worse... we can do this." Bart and I have become stronger in our marriage and with our relationship with the rest of our kids. We are looking at life differently these past few days... we are NOT sweating the small stuff anymore... well at least I'm not... Bart has always been strong enough to deal with all of this... but like I said, we both are getting to a point where we are actually feeling like we could "sink" in all of this. Please continue to pray for strength and encouragement these next few weeks for "our family" ... with her injections approaching in the next few weeks... we need prayer for her to be healthy on June 1.. or the docs will push them back, since they need her to be completely illness free. We start preop stuff this week...wish us luck.. and also pray that things maybe... kinda slow down a bit... We are holding on... but our fingers are turning white from of the "fast" pace... Faith in God alone is gonna get 'our family' through Neela's start to this journey. God Bless... oh and also please pray no more posts 'til June 1... (in other words no more doc visits 'til then ) :) :)

May 16 Neela to ER

May 16

Bart got off work on this evening and we both decided that we wanted to go over to Prairie Du Chien, Wisconsin... for a last minte shopping trip to Cabela's. As we got ready, Neela was playing with her toys and acted completely normal. As we got into an hour of our trip over there, Neela became very fussy and tired. I noticed that she had felt warm... so had Bart drop me off to get some Tylenol. Gave her some of that before we went into Cabela's. She was fine in Cabela's, but still pretty fussy. We stopped and got a bite to eat at Culvers... Neela ate and drank quite well. We were all beginning to think that she was trying to kick this sort of bug or infection that she quite often usually gets with her LM. We went into WalMart... shoppped a bit. While checking out our items... Lexi was holding Neela. Lexi all of the sudden said, "Mom there is something wrong with Neela!" I grabbed Neela and she was stiff as a board, but yet limp at the same time. I looked at her face, and her eyes were no longer fixed on anything. Bart immediately grabbed her out of my arms, and started to say her name. "Neela?" Neela?" I immediately dialed 911 on my phone... told them what was going on. I felt in my gut that it was a seizure that she was having. After I looked over at Bart, I asked him... "Is she ok?" I will never forget his face... it was as white as a sheet. I finished paying and loading up kids to the van... the police and ambulance were in front of the store in about 5 minutes. As I got to the van... I immediately grabbed the kids hands, got into a circle and began to pray and pray that HE would protect Neela from whatever was happening to her. I felt like a whirlwind of tornados couldn't knock us off our feet because we were in such deep prayer for Neela. Bart took her in the ambulance, and I followed behind. The ambulance wasn't trucking so I assumed she was stable and okay. I realized the strength and love in our family when I heard sobs in the back of our van. Marissa was pretty much nonconsolable. Lexi was just sobbing. Clint had great big tears just sitting on his eye lids. Jake was very confused. Tate was asking, "Are we going to go and get Neela back?" Beau had no comprehension as to what was going on, but knew we were all hurting and were concerned. I immediately made phone calls to our parents and closest friends to let them know what had happend and to PRAY. We got to hospital and was relieved to see Bart calmly walk with Neela in his arms. She was awake and alert, but pretty shaken up. The doctors evaluated her, drew bloodwork, and did a chest xray. The doctor had no clue what was wrong with Neela's swelling on the right side of her neck, imagine that? I gave him a quick rundown of what a lymphatic malformation is and what is in store for Neela this summer. I get so frustrated that there is a lack of awareness for people, nurses and doctors about Neela's rare birth defect. My goal someday is to actually make a difference in getting the awareness of her LM out there. Neela ended up having a febrile seizure... because she had such a high fever. Neela's bloodwork came back normal, except for her white blood count. It was significantly high. The chest xray was normal. We were there for about four hours... the doctor gave me a choice to either stay, and have Neela be evaluated, or we could go home if we would follow up with our family doctor in the am. We chose to go home since Neela was stable, and we were an hour away from home with seven kids. We will recheck her and see where those white counts are in the morning... hoping and praying she kicks this so we can move on. Another day that we experienced, not a dull moment. Realized today that "our family" is irreplaceable and our strength and love together is as solid as a rock. God Bless... he sure has blessed us tonight... by having our baby girl safe in our arms...

Neela's May 10 appointment

May 10, 2010

Neela went to the University of Iowa Hospital today to see Dr. Richard Smith, MD. He was very pleasant to Neela and I. His plan for Neela is to start the series of injections called Ok-432. Neela will be in a "study" of his, since the medicine is not FDA approved. The medicine is made in Japan. It is sent over to the United States for Dr. Smith to use in studies of his. He has about 12 other sites in the US that he uses this drug in his "study". The drug itself has a 80-90% success rate in helping shrink the macrocysts, like Neela's. Her first injection is June 1. She will be put under general anesthesia for this, so this will be good for her sake. The side affects of this drug are swelling in the injection site, fever and feeling like she has the flu. This may last several days after the injection itself. She can receive up to four of these injections, six to eight weeks apart. So this will be a long summer with driving to and from Iowa City. After these macrocysts are cleared up, they will try and work up the microcysts that Neela has. They don't do any injections with these, but can possibly do surgery. The doctor said that we should just concentrate on the big macrocysts first, then worry about the micros. I have complete and full confidence in this gentleman, as he cares for our baby girl this summer, and in the future. I know that he is very knowledgeable and trustworthy. He has a nurse that works along side of him named Diane Burke. She is amazing and very helpful. She has great empathy towards these families that seek Dr. Smith's care. I think she will be a great person to have along board with this course of treatment. Please continue to keep our family in your prayers, as we are just starting out with Neela's journey.