10/25/2010 Praises, praises-- Alex had his IV Picc line pulled out last week. He is feeling well, is going to school and is being a teenager! Now he'll just have to cough out all the infection as it sloughs off his lungs. We served nearly 370 at the waffle fundraiser for CF on Sat.! Thank you so much for your support, work, etc. We are truly blessed!
10/8/2010 The Dr's left it up to us if we felt we could come home and "do the routine" or if we wanted to keep Alex in Blank through Monday; we are home. This afternoon, they placed a picc line into his left upper arm. There are 31 inches of tubing running from the arm up to the heart area. We use the picc line for all the IV push lines and treatments. Before we left the hospital today they did a CT scan. The scan clearly showed the areas of the lungs being impacted by the infection. At this point the good news is there is no evidence of "long term damage" to the areas. You could see where the air gets trapped behind the infected/inflamed areas. The routine is fairly hectic between three cycles of IV's, his vest treatments and extra breathing exercises; and the physical therapy he/we need to do... We'll do this routine until at least the 19th when we'll do a couple tests and see the Dr again. That day we'll determine if the 2 week "tune up" of treatment has been sufficient of if we'll continue the IV's longer.
As you can imagine, he is VERY relieved to be home already. His arm is achy; however, in general his energy is good. He is not on restriction in re: to activity other than what his energy and pain tell him. He would welcome visitors to give him a break from the homework he'll be doing to get caught up over the weekend. He is planning to go cheer on the marching band tomorrow morning as they compete at Valley HS. Go Band.
Thanks for all the support, assistance and encouragement.... the journey continues.
Alex is all checked in here at Blank.He’s in room 407 and really does enjoy having visitors. Nothing much has happened yet, they will be starting his IV treatment in a little while.It sounds like it will be the same two antibiotics in the IV that we used last Spring, so at least it’s medications his body has tolerated previously. If you have any VCR movies and are headed this way, we’d like to borrow… his room only has VCR not DVD.He’s relieved to be here and be getting things started. When it comes to health, DOING is always better than the WAITING.
9.28.2010 Today on my way home, I received a phone call from Alex's Dr. They had received the results showing all that is growing in his mucus.(at each visit he coughs up a sample and they test it). The infection he has is "treatment resistant", meaning the "typical" CF things like strong oral antibiotics combined with inhaled antibiotics and steroids will not work. Our only option is to get things organized to start an inpatient stay. The team recommended Alex check in sometime in the next 10 days to start IV therapy. They originally stated he would be coming in for a "tune up" (a 2 week stay); however, I inquired about us being able to bring him home earlier and complete whatever IV cycle we need to do from home. The plan is that we will be checking in Alex to Blank Children's on the morning Wed. Oct. 6; they have told us he will be there for a minimum of 4-5 days. Between now and then we are encouraging him to simply enjoy homecoming week and start working with his teachers to gather materials he will need for the time he is in the hospital. The Dr. stated he will be doing pretty intensive respiratory therapy and physical therapy each day; yet we are hopeful he will be able to skype into some classes each day to stay connected.
9.24.2010 Alex- things are not looking so great…… for recall purposes: He finished his home IV course the end of June and his lung function had increased “some” through the treatment. We were hopeful it would simply continue to increase; however, the opposite is true that at each point we’ve done lung function tests they have dropped “a little” each time. The concern is this- x-rays and sputum tests show no change happening, which leaves us asking a lot of questions about what is really going on in there. We’re treating with a high dose of oral antibiotics and with another inhaled medication pulmozyme (it’s function is to thin the mucus making it easier to move it and get it out—this is something new added to both boys daily routine we will now do every day, always until something better comes along). We are aware that even with the insulin pump Alex got this fall, his glucose has not been managed. We are VERY hopeful that he will be able to manage this better. The high glucose numbers negatively impact the body’s ability to heal and fight infection. They are giving us three weeks of a new regiment to see if we can clear up some of the gunk in the lung. Alex has admitted he is in continual pain in his chest (he hates to talk about not feeling well). We’re hopeful that in three weeks we’ll have some significant progress. We meet with Dr’s mid Oct.
6.21.2010 We are saying prayers of thanks!Alex is feeling so much better!!!He is back to playing baseball and is taking Driver’s Ed. Follow up with the Dr. two weeks ago went well—sputum culture only grew aspergillus (fungus) so we will treat him with an oral medication.He has made the decision to get an insulin pump.We are in the process of meeting with different companies to see his options.Both boys will meet with the full treatment team from Blank for the first time on Wed. of this week.Our transition of care to Des Moines after so many years of working with Dr. Nassif and Iowa City was a HUGE decision.Dr. Nassif has been and will continue to be an important part of the boys’ and our lives.THANK YOU, THANK YOU for your prayers, energy and encouragement through this past spring. We are so relieved we’ve rounded a corner…. Now onto more “typical” teen activities like, camp and having wisdom teeth surgery in August.He’s hoping to get those braces off the teeth sometime this fall!!
Memorial Day will be the end of Alex’s first cycle of home IV medications. In some ways it’s hard for all of us to believe it’s almost done, we’ve been on automatic pilot getting everything done in a day we need to complete.Alex is more than ready to get it over with.We heard from the Dr’s office today and Alex will be going this Thursday for lung function tests and lab work to see where things stand.We should have results back from initial tests on Friday letting us know how we’ve done tackling the infections.Once the Dr. has that information he will let us know if we’re going to get to have the picc line removed from his arm and what the next plan is.
I was tearful on Sat. as I watched Alex run out on a baseball field and take 2nd base in a game for the first time this season! He was so excited to get to play and to see everyone. It’s been a lonely spring and he’s sick of us! : -)) His color is much better (however, those who haven’t seen him in a long time comment on how pale he is..) his energy is improving every day and he’s working, working each day from home to complete papers and tests by the end of the school year.
I’ll keep you posted.
THANK YOU SO MUCH FOR YOUR SUPPORT of GREAT STRIDES!
Last weekend there were over 800 people in attendance and over 203 K was raised toward a cure! Both Shade and Alex were there to walk and we were excited Alex felt up to the day.See photos below!
Alex is ½ way through his home IV cycle. Home health comes two days per week to check on things and make sure everything is going well. Alex has still not returned to school; however, is working on assignments from home. We are all glad that I have the summer off from ISU to help ease the schedule and get through the next two weeks before we retest.Today both boys started Physical therapy and reported if felt REALLY good to get stretched!
Alex is home again!! He was released last night about 7, following a lesson to the parents about administering the medications at home through his pick line. Technology is amazing... we're actually doing IV treatments without an IV pull and big machine. We have to use several syringes of meds to push through the lines. His Big dose of the Tobi antibiotic is in what looks like a plastic ball with a line off it (OK really it looks like a cherry bomb). That larger dose will take an hour, but he can litterally put it in pocket so he won't be "tied down" at all. The new way changes what we thought was going to happen and makes it much more efficient and easy for us at home- 7:30 a.m. push meds which will take about 10 min. 4:00 longer one likely 1 hour 15 min. 11:30 at night 10 min.
The other FANTASTIC news we got is that when he feels up to it, he can get active again, so we're looking forward to seeing him on a ball field!
good night of rest, Alex is teasing all the workers and giving them a hard time... I know, typical of him right. I suppose that's a good thing :0) His morning IV round is the longest round. 1 bag of med takes 30 min. 15 min. of saline second bag of med takes 1 hour then another 15 min. of saline. The other two times per day he only will have to do the shorter cycle of 30 min. bag and 15 min. flush with the saline.
5.3.2010 Alex is all checked in at Blank Hospital. They have inserted his pick line- a purple plastic tubing that runs from his arm up to the heart. They just took an x-ray to be sure its all in the right place and are getting ready to start the IV's. The Dr. said there is actually a possibility we'll go home as early as tomorrow... that would be great. Sounds like we'll be doing three cycles of IV bags per day. Will keep you posted.
check out my pick line
plastic tube running up Alex's arm to his heart
Thursday April 29th
Alex met with the two teams of Dr's today from UIHC. The great news is that the hematology Dr's have given him the "all clear" and have released him from their care, seeing NO Cancer related things.
The second news is that we have a treatment plan for his lung infections and for his liver. Even without confirmation ALL the teams of Dr's believe the liver condition is the Histoplasmosis. Within the next few days, Alex will be re-admitted to a hospital (not sure yet if this will be in DM or in Ames) so they can start him on an IV treatment cycle. They will be mixing a combination of meds to address both conditions simultaneously. Once they get the IV's set the way they want them to be, we will continue the IV cycle at home for a 30 day cycle. He will not be hooked to IV's for a full day each day; however, will just have the port in place so we can hook up the IV's as directed.
All of us are feeling a mix of relief AND the realities of the new plan.... we are pleased we're going to be able to get this all started closer to home which will make things easier. Alex said he thinks this is a good plan.
As you pray for Alex please remember to include Shade who is VERY worried about Alex and watching him struggle so much!
A reminder that tomorrow is the last day to order the ADM Team Hall shirts! You can send your order to me via e-mail, text it to me 515-231-3918 order forms and designs on my web site...
Alex has been home for nearly 18 days. He is not feeling any better than when he left hte hospital and has been only able to attend school about 1 1/2 days per week. He is sleeping anywhere from 12-15 hours per night and continues to be completely exhausted. He is really excited today; however, as he skyped into at least one class. He said it was GREAT to see his friends and to feel a part of things for even just a little while. He has appointments scheduled on the 29th with a couple different teams (CF team and hematology team) back over at UIHC in Iowa City. Continue to send prayers this way!
You'll find supporters of TEAM HALL doing a change drive on the corner of Nile Kinnick and Main on Sat. We're hoping lots of you will sign up to ride the "Bus for a Cure" to the walk - check out the CF section of the web site.
4/4 happy easter
We are in the midst of a disagreement between a couple Dr's this morning, so they've headed off to find another Dr (the radiologist ) to get a formal reading on the CT scan from yesterday. The gasterointerologist showed us the CT scan and showed us that there are many small things in the liver that don't belong there. He does not believe they are cysts; however, thinks they are absesses.... he still thinks it isn't "anything terrible" whatever that means; but it is good to hear him say that. The hemotology staff have stated they see no indication of concern immediately from the CT scan. There is ony lymph node that is "between" the cateory of no concern and concern. It is the watch area especially if wt. loss contiues.
Didn't even get to hit publish befroe they came back with a reading from the radiologist- it is an infection in the liver. They are lots of absesses. They are having infectious disease come back. They still believe that whatever he has is on the way "out" since he has had no fever since Wed. , color is getting slightly better, energy is better; however, he has not been doing anything but laying around.
Sounds like after a few more tests today we may get to go home. Will keep you posted.
4/3 5:00 p.m.
We are not going home. The CT scan told us serveral different things:
2007 was his last lung CT. It showed a 4mm spot in the upper lung.
It is still the same size- good news. They found an new spot in the lower left lung also 4mm. These spots are what happens in CF as it progresses.
They were also able to see the lymph nodes are swollen a little.
Two cysts showed up on the liver. They are both 6mm. We do not know anything about them at this point. The CF team said this 'sometimes' can happen for CF patients.
The gasterointerologists are now getting involed ordering more labs, the hemotologists are ordering more labs. None of us here are pressing panic buttons, we are trying very hard to be glad we are in a place where they are being so complete. Keep the prayers coming-- we all need them.
4/3 10:30 a.m.
update on yesterday afternoon... more test run, another team of Dr's came in from both Infectious Disease and from Hemotology... all stumped. Alex is offering quite a puzzle for them to solve. We're glad none of these teams had a strong answer we don't really want a diagnosis from either of these two groups.
They are getting ready this morning to run a series of CT scans on lung, digestion and pelvis to rule out any things there. If those come back "unremarkable" we will likely get discharged to go home today :-)
Most logical hypothesis at this time is that Alex had a strain of a virus that mimics mono and that the two fevers back to back were the virus burning out and ending. (I actually like this outcome...If I got to pick this would be my choice!)
Praying now that CT shows nothing. There are several tests running that take several days and a couple test running that actually take a few weeks to complete....
Hoping you get a post we're headed home later....... Michelle
Different Dr's from the team have been in this morning. The night went well, no fever. They are ordering a CT scan, another type of sputum culture. They shared with us this morning that another marker in the blood was elevated that may indicate the first a strain of some mono, they are re-running the mono test. If no tests come back with positive results we'll likely be released late tonight or in the morning. Still praying for an answer.
posted 4/2 5 a.m.
Since I'm wide awake, I think I'll send an update out about Alex.
To catch some of you up to speed, Alex was admitted to UIHC hospital on very late Wed. night through the ER. He had not been feeling well for 6 weeks with fatigue, on/off high temps 103+ at night; weight loss... all of the outpatient testing had not revealed anything. on 3/14 a trip to the Blank ER in DM showed elevated white counts, a large dose of antibiotic was given and he seemed to do OK for about a week after that....however, then the temps started again. Wed. afternoon he and I drove over to Iowa City for appointments scheduled on Thurs. to try and figure out what was going on (Shade also scheduled Thurs. for reg checks)... that night he spiked another high fever and we decided to go ahead and get the ball rolling.
Since admission, they have ruled out all sorts of things from mono to rare strains of flu. Alex has managed to continue to find his sense of humor through the over 20 vials of blood they've taken (mostly through his IV port), x-rays, a nasal lavage (Alex would not recommend getting your nose vacummned anytime soon).... The only conclusive thing we have at this point is: blood shows there is inflammation in the body somewhere, we don't know where or why.
Yesterday, they took Alex off all his regular oral antibiotics and his regular anti-inflammatory (1000 mg of Ibuprofen 2x/day) --- now you know why those high temps are even more concerning when he already takes this much ibuprofen---- The Dr''s are hoping the symptoms will increase enough they can actually get a diagnosis today.
Yesterday afternoon his cough was already kicking in and he was producing sputum, something he had not been having up to that point..who knows maybe we're going to find out it is a lung infection hiding under there...
Shade is here in Iowa City with Alex, their dad and I. He is terrified.
Yesterday, Shawn was here for a few hours (went back home to be with Caden) G&G Roling, G & G Montang, Chase Wallace all here to see Alex yesterday and braved having to mask up (the nurses all come in looking like they're treating a "rare science" as Alex said-- project protected mask, gloves, paper gowns they throw away each time)
I pray they continue their search and get an answer so Alex can have some peace of mind and a good treatment plan. He has been so worried as he's watched his body betray him.
Yesterday, I was thinking about all life has brought since the last time Alex was in the hospital when he was only 10 weeks old... he's fought so many infections between then and now at home. Hoping to get a treatment course soon and get him back home!
If you want to continue getting updates, please go to my web site, where we'll post them. www.michelleroling.com