Brooke had a good night

Brooke had another good night. No fever. Allergies are really bad this morning but no fever. The infection is looking better. THANK YOU GOD! Keep the prayers coming our way!!!

Second Opinion

Brooke seems to be feeling much better today. No fever last night and she slept well. She stayed with Ma and Papa today and was happy, playful, and got her appetite back. Praise God! Her infection looks a little better, but is not the "drastic" improvement I was hoping for overnight. I took her to see her PCP this afternoon and he has some valid concerns. Plan 1: He added another antibiotic to the one she's already taking and wants to see her in the morning. The Infectious Disease doctor here will also evaluate her. If she's not noticeably better, he will most likely admit her to the hospital and start her on IV antibiotics, which would be plan 2. Please pray that isn't necessary! Plan 3 is giving a shot of GCSF, which isn't pleasant but might help kick her immune system into high gear, at least temporarily. Plan 4 (and we're really praying this never has to happen) would involve sending her to Albq. to have a surgeon evaluate whether or not this cyst needs to be cut. Please pray this isn't the plan!!

Pray for healing, comfort, knowledge, guidance, patience and a solution. An answer would be acceptable. Ha. Your prayers are working because she looks and feels a LOT better today than she did yesterday. Thank you! Please keep up the good work!!

Bad Saturday for Brooke

Yesterday was awful. It started out fine but quickly went downhill. Brooke had one of her "unexplained shaking/blue nail" episodes yesterday morning. Her body gets really cold, then goosebumps appear, lots of shaking like she's cold, her nails turn blue, her breathing is unusual and she does a lot of yawning. Her oxygen stats were low (84) but climbed to 95 within a few minutes. We took her temp. and it was 102, even though she was cold. Once we got her calmed down with daddy holding her - the heat hit. She was hot! We did tylenol and let her sleep it off. This is the same thing she has done twice in the past after the salmonella. Nurses in the hospital witnessed it once and couldn't really figure out what was going on? It's a cross between a seizure and hyperventilating. Called the on-call home health nurse and she felt it was a febrile seizure.

So we decided to do her long infusion (4 hours) since we were off a few weeks due to the INR levels being so high. (Don't need to be putting two needles in a belly when the risk of bleeding is higher than normal.) Upon a trip to potty, I noticed something not right when I wiped her. Turns out she has another one of her spots that had become HUGE and infected practically overnight. We didn't even know she had a spot.It is awful looking! So I called the on-call home health nurse back and she suggested we take her to the ER once the infusion was over. We knew she needed to be on an antibiotic. We put Brooke in bed to finish the infusion and with about 30 minutes left to completion - she had another seizure. Then the fever hit. She doesn't do this with high fever typically. Whatever it is - it's scarey because of the blue nails, labored breathing and oxygen levels. Yep...I have my own oxometer...it helps me get through the big seizures. Best money I ever spent for peace of mind! I can watch her CO2 levels and heart rate with my machine and it's tiny...fits in my purse.

Long story short...we stopped the infusion and spent the next 3.5 hours in the ER. I have to admit...this ER experience was a good one thankfully. The doctor we saw (Dr. Colon from Puerto Rico) was very nice and thorough and he listened to us. They couldn't get an IV started (after 4 sticks) so we drank root beer instead. Ha. XRay was clear. Labs were messed up in the areas we know are messed up. He prescribed Cipro and told us to follow-up with our PCP. I should end the story here, but you have to hear the rest. Pharmacy X was closed at 7:30 when we left the ER so Brooke went without her medicine overnight. I called first thing this morning to see when they opened and was there in line. 45 minutes to fill it, but they didn't have the liquid so we got horse pills that we have to cut in half. Whatever you do...don't get sick after hours in Clovis!

The fever continues today so all Brooke has done is sleep. She's not eating much or drinking much. Fever is low grade but has zapped her of what little energy she usually has. The plan is to call our PCP tomorrow and try to get in for a second opinion. I will also call UNM to report this to our Immunologist and the Infectious Disease doctor. Please pray for healing. For the antibiotic to kick in and knock out the infection. For the fever to subside so Brooke gets her strength back. Pray for an answer to what these spots are! I noticed 3-4 new ones on her bottom this morning. Thank you all for your well wishes...we couldn't make our journey without you on our side!!!

Going to Denver

Dr. Clayton called Monday (the Immunologist) and he is referring Brooke to National Jewish Hospital in Denver. There is a team of doctors there that will evaluate Brooke and make treatment recommendations. The process of getting there will take some time (insurance, scheduling, accomodations, etc.), so the ball is now just starting to roll. Dr. Clayton said to expect at least 6-8 weeks for an appointment. That's what I figure will happen just because it's the most inconvenient time for us. We have Special Olympic state games in Albuquerque the 22nd of May and our trip to Hawaii the first week of June. Neither will be interferred with...they'll have to work around those two times. I really hope this will occur in June so Mike can go with me.

Please pray for guidance for Dr. Clayton as he makes the arrangements. Pray for us to be put with a knowledgable, compassionate team of doctors that will listen to us, be open to what we are saying, and will take some of the existing results and not feel the need to have to start from scratch. Our biggest fear is having to put Brooke through a bunch more tests that cause pain. I pray for doctors without egos. I pray that this team is trusting of what has already been done and will only do tests that are 100% necessary and not treat Brooke like a circus act. (Yes, it happens. We've had doctors wanting to cut a section of her skin out just to look at it under the microscope. NO!) I pray that everyone that comes in contact with us has an understanding with the trauma this places on Brooke and the anxiety levels of all of us. And please pray for strength, patience and tolerance on my behalf.

I'll keep you posted as I know more.

Pray for the Miners

Please pray for the miners and their families in West Virginia. What a tragedy! Both of Mike's grandfathers were miners in Virginia and a lot of his distant family worked in the mines. Mining is a big part of the Hankins and Lowe family history. I can't imagine the impact something like this has on a small community. Please pray for comfort for all of these people.

Doing OK - Mike Home - Where is Brooke

Brooke had a good weekend - thank goodness. It was a little scarey with her INR sitting at 4.5! That's seriously thin blood. Any cut, scrape or a bloody nose could've been super serious. I crammed her full of spinach and broccoli and Pistachio pudding...all the things she loves but usually can't have due to their vitamin K. (Vitamin K is a clotting agent, so people on blood thinners have to watch their intake of foods with vitamin K.) The home health nurse comes tomorrow to re-check her blood. Hopefully the INR level is substantially lower! She went back on her Coumadin last night, so we'll see how it goes. She seems to feel better finally. No fever for about 3 days now, so maybe whatever it was she had has worked its course. Albq. doctors are supposed to call next week with the game plan.

Mike got home mid-afternoon today. YAY! He's been in Austin for an invitational track meet since Thursday...he loved Austin. The bluebonnets were in bloom and he even stopped by the side of the road and picked me two. How sweet is that! I've been to Austin twice, but never in the spring when the bluebonnets are blooming. I would love to see that! We're glad he's home safe and sound.(I knew he'd eventually grow to love my state!)

Brooke was outside when Mike was mowing earlier and he lost her. That's a bad feeling for sure. She had gotten in her car all by herself and was just sitting there, in the garage, with the door closed. How funny is that? So we went for a ride. She cracks us up!

Thank you for your continued prayers!

UNM Appointments - Denver or Houston - Blood too thin - Feeling Bad

We spent Wednesday morning at UNM. Brooke saw her Immunologist, Dr. Clayton, who is the sweetest, kindest man. I just love him and his caring bedside manner. It's refreshing. He had definitely done some research on Brooke's issues before our appointment and had his game plan laid out. He took a lot of blood, most of which had to be sent out of state within x number of hours in order to remain viable. He has some thoughts as to what "might" be causing the high IgM level but he wants the blood work to tell the tale. He didn't know what to think of her spots so he called in an Infectious Disease doctor to evaluate Brooke. Enter - Dr. Martha Muller. WHAT A GODSEND! She seems to be the person we've all be praying for! She's kind, gentle and interested in everything going on. Guess what? She is totally smitten with Neutropenia! Take it on!!! Most doctors run the other direction, but she was like a breath of fresh air. She has some thoughts on various things she saw on Brooke and/or things she briefly read in her chart prior to walking in the room and she wants to do some more reading up on Brooke before she lays out her game plan. She explained things in a way we've never had them explained before and it made sense. I feel so relieved with the visit and I feel we are finally on the right path. Thank you God for putting Dr. Muller in our lives and for Dr. Clayton not giving up on finding the answers we need.

Dr. Clayton will be referring us either to Denver or Houston to see a team of doctors who will evaluate Brooke. While I hate the thought of having to go so far and possibly having to put Brooke through more tests, the possibilities excite me. A second opinion (overall) may be what we need. UNM is pretty much the only place that has ever treated Brooke, with the exception to UMC in Lubbock when she was first born. Please pray for direction for Dr. Clayton as he determines which location will best suit Brooke and her needs.

Can someone please tell me where the switch is? You know...the one that turns off the bad stuff? Enough already!! The home health nurse came yesterday to take Brooke's monthly INR reading. A month ago it was 2.2, which is where they like to see it, but is considerably higher than where Brooke has been in the past. We all felt the INR should've been done sooner than a month later, but we lost that battle. So the results yesterday show her at 4.5. Very thin blood and extremely dangerous. This is so thin that a cut could be tragic. So, no Coumadin last night or tonight and back on the normal dose Saturday and Sunday and a recheck Monday. Brooke is liking it in the sense that we're cramming spinach down her which is a no-no most days. When your blood is thick, you avoid foods with vitamin K because it's a clotting agent and you don't want clotting. With an INR of 4.5 - YOU WANT CLOTTING! So vitamin K is our best friend temporarily. Sad thing is, Brooke doesn't understand any of it. Why mom won't let her eat this or that and now all of a sudden she can have as much of anything she wants. Very confusing to a little girl.

Brooke has felt bad since last Friday. Fever that comes and goes has to be monitored very closely. She seems to be past the 101's and 102's, but the 99's are still very frequent. She's been on an antibiotic for over a week for a skin infection, yet it doesn't seem to be kicking whatever "bug" she has. Maybe the fever is another symptom? Please pray for Brooke. For healing. For comfort. For direction from the doctors. For Mike and I as we tend to her needs.