Happy News :)

Hello There!

      I figured I would go ahead and get y'all up to date with the recent happenings instead of waiting, forgetting half of it, and leaving y'all with an enormous amount of reading! ;)

No signs or symptoms of any clots in my left (PICC line) arm and the symptoms from the DVT (deep vein thrombosis) in my right arm are rare and mild!  My Lovenox injections (blood thinner) are doing great as far as MCAS goes.  I go to my hematologist's office on Thursday to get my blood levels checked and see the PA.  My hematologist isn't in this week due to having hospital duty.  I'll see him the next week when we go for our 6 week appointments.

My GJ feeding tube is still working great and in the right position!  I've gradually gotten my feeding rate up from 20ml to 70ml per hour for 12 hours a day and am now on full strength formula.  I had been having to mix my formula at half strength because I would get a lot of pain and such with anything stronger.  I have had no issue with the balloon coming into the stoma (hole) since I got this tube.  That is a huge blessing in and of itself!  I'm back on my oral meds, too.  I'm reacting to nearly all oral food right now, so I'm definitely very thankful for the ability to get my formula rate up!

I have an appointment with my PCP on Wednesday, just for a regular checkup.

OH, and my home health pharmacy is sending a special "Y" extension for the tubing on my benadryl pump so I don't have to keep disconnecting the tubing from my PICC line to do emergency meds!!!  That will be a HUGE convenience! :)

Some have had some issues with my blog not working when they enter their email address to be able to follow my blog.  SO, with that said, if you are having those issues, please comment your email address (**it will NOT be posted**) and I can enter it in for you......let's just call it "administrator privileges!" ;)

Taking Life One Day at a Time,
                                          Allison

Home!!! :)

Hi!

    After 16 long days in the Medical Inn & Suites, I finally got to go home yesterday afternoon!!!!  My feeding tube is working like a charm, meds and feedings are going well.  I suspected one of my stitches in my PICC line had come untied, and we confirmed it this morning when my home health nurse changed the dressing.  We called my hematologist's nurse and they ordered my PICC to be stitched STAT (urgent) because we just can't lose this PICC line!  They told me to leave right away because I had an appointment for around 45 minutes later.  Anyways, got a new stitch and the other stitch got tightened so it wouldn't untie so easily.  It feels wonderful to be home!

Thanks for all your prayers!!

Allison

A New Tube

Well, we went down to endoscopy, they got her all ready, and we thought she was going to have to come back to the room without a new tube. . . again.  Right as they were getting ready to roll her back, the doctor came out and said the tube was too short.  It wasn't long enough to get across her stomach and into the intestine.  Thankfully, the nurses scattered across the hospital and called other hospitals until they found one.  Allison now has a GJ tube.  It is clamped into the intestines, so they are hoping it will last a lot longer.  The procedure went well, and she had a good night.  Ezra alerted just as she was coming out of anesthesia, but after a while, they allowed him to go back to the recovery room.  He checked her out pretty thoroughly and then laid down and was fine.  Whatever was going on apparently settled down.  We are so thankful things went so well!  As of this morning, she is exhausted and sleeping soundly.  We are trying to get things worked out so we can go home.  There is some question from the doctors about whether giving medicines through the tube will clog it since medications are not typically given through the J tube.  However, we have not had issues in the past with clogging.  Still hoping to go home today. . . . 

Third Time's The Charm?!

My sister has seen the feeding tube that they transferred to endoscopy from radiology and it is the correct GJ tube.  I'm scheduled for 5:00 and will probably be heading down to endoscopy sometime soon! :)  Hopefully this will follow the saying..."third time's the charm!" ;)

Would appreciate your prayers!
Allison

Tired.

Hello!

    I'm back! :)  My GI came in this morning to try to sort things out with what tube needed to be transferred from radiology to endoscopy.  It was an absolute frustrating mess for a little bit due to the radiology tech not understanding a lick of what my GI was trying to explain which resulted in confusion for the GI.  Yeah, it was just a mess!  I think we FINALLY (maybe?) got the right tube in the right department.  As soon as we hear anything about me being scheduled to get it done, my sister plans to go down and actually look at what they have to make sure it is right before I go down, wait for ages, and then find out it isn't the right thing.  I haven't had any food or drink since midnight, so I'm really hoping they'll go ahead with it.  My GI is not really in support of this whatsoever.  She's thinking we're moving in the wrong direction, because normally, endoscopy sends patients to radiology instead of, in my case, radiology sending me to endoscopy.  They send them to radiology because of the tubes coming out of place.  She said this is a one time thing, because they can't keep putting me under anesthesia to replace the tube endoscopically, and I ultimately really need a surgical J tube.  She thought I needed a separate G and J tube before I had this last GJ tube surgery done.  So, unless this next tube change miraculously works, this procedure is just buying me time and delaying another tube surgery.  I knew that, but I really wasn't ready to accept the situation.  I'm pretty rapidly running down without my formula.  My energy is dwindling.  I've lost three more safe foods which leaves me with only two, non nutritional foods.  I'm really, really hoping they can get me in today to get the GJ tube so I can start formula tomorrow!!

Waiting on endoscopy....again! :)

On a really exciting note.... the ultrasound done on my arm with the PICC came back all clear so NO CLOTS!!!!!!!!  YIPPEE!!!  This pretty much proves my mast cell specialist's suspicion of my reacting to the materials in the other PICC being the cause for the blood clots.

Today is the day that hospitalists change over, and thankfully, I got the doctor I had during my first week here.  She pretty much just confirmed that we're waiting on the tube placement, have to get the blood thinner worked out to do at home, and then I can get outta here!  She is ordering physical therapy for while I'm here since I'm confined to my room and can't walk the halls due to the many triggers I would come in contact with.  So, yep, right now we're just waiting to see when they can get me in for the tube placement and, in the meantime, waiting for PT to come work with me.  She is just concerned with me being cooped up and having EDS, I would need to keep my joints in place by maintaining my muscle strength, and that means I need to keep moving!

That's all I know for now.  Hopefully I'll hear something soon about when I'm scheduled to get my tube!

Allison

Still Waiting. . . .

Once again, I'm updating for Allison.  She'll update when she's feeling a bit better.  She's pretty tired this evening.

Well, we came and sat. . . and then we came back to the room without a new tube.  They came to take Allison to endoscopy at 1:30 -- much earlier than we expected.  Everything was going great until they took a second look at the feeding tube.  It was the right brand but not the right tube.  Soooooo. . . they're searching for the right tube now.  Checking the children's hospital and such.  Hopefully they'll have it tomorrow?  Allison's GI will be stopping by this evening.

Wonderful News!!!

Well, hello there!

     I bring very good tidings!  My GI came in last night, said they got the tube from radiology, and the other GI is going to try to work me in this evening.  If not it'll be tomorrow.  I think they probably have me scheduled this evening because I'm NPO (no food or drink) after
10 this morning, they took a vial of blood (probably checking thrombintine), and they skipped my morning dose of blood thinner.  If I'm scheduled, it'll be around 6ish this evening.  If he can successfully place the GJ endoscopically, I should get to go home sometime next week!  So for those that might not catch my drift......I plan on next week so I get to go home tomorrow instead of planning on tomorrow and getting out next week! ;)

I began having some deep pain right around my PICC line on Saturday so the hospitalist ordered an ultrasound yesterday just to make sure it isn't clot pain.  We haven't heard back yet on whether or not it was clear, and the hospitalist hasn't come in yet this morning.

I am SOOOOOOOOOO thankful this doctor is at least going to attempt the non-surgical kind of tube, and I don't have to resort to surgery, at least for now!

I'll try to keep you updated, but if I'm not able to, someone from my family should be able to keep you informed.  :)

Allison

Different Plans.....

Wow...Where to begin??  Things have gone SO different than I hoped.  I talked to every nurse and doctor I saw about how I needed this certain type of tube, etc.  A PA from GI came to talk with me about the procedure, we discussed the tubes, and he said he would let the doctor know.  Transport came to take me down to endoscopy at 3:00 in the afternoon.  Once I got down there, they registered me, hooked me to the monitors, and started an IV.  About three and a half hours later, when they were getting ready to wheel me back, we asked to speak with the doctor doing the procedure because we needed to discuss the tube he would be putting in.  He came out and told me what tube they were going to put in and I'm thinking "Ummm, wait a second here!".  The brand was not one I had ever had before, it had a disc instead of the balloon to hold it in, he was going to stretch my stoma from a 16F to a 24F for that specific tube, and, of all things, he said that tube was "notorious for flipping"!  Uh, yeah....NO!  Everything is going against that tube for me.  He told me they didn't have any of the Mic PEG-J tubes and it was too late, by then, to talk with radiology.  Oddly enough, he almost seemed like he was trying to talk me out of the tube placement.  He said they could just not do it right then, regroup today since my personal GI is on this weekend to see if she would do it, and if not, he could do it on Monday.  I chose that option and as soon as the doctor walked off, I lost it.  I was really discouraged, hungry (had fasted since midnight), and started crying.  I had my heart dead set on getting this over with and getting to go home within the next day.  After 11 days...that experience dealt an extremely hard blow!

Waiting in endoscopy

The PA came back in this morning and asked about last night.  When I explained the whole situation he said he was going to make ANOTHER detailed note and make some phone calls.  He called my GI, and she said she couldn't do that tube.  She came up to see me this afternoon and asked me to tell her what was going on.  When I explained it to her, she very matter-of-factly said "yeah, it {last tube surgery} failed." and pretty much I just need a surgical J tube.  She said she couldn't do that other tube and would only place the tube they have in endoscopy.  I presented our idea of radiology putting the GJ in and her following up with an endoscopy to check the placement, but she said radiology was not wanting to attempt it again because of my critical health issues and the fact that they can't use dye...they were afraid they were doing more harm than good.  We told her that the surgical team did not want to do the J tube surgery and she just said "we'll find a surgeon that will".  She just feels that we are kind of going around in circles with this whole mess, having 3 failed gastric surgeries (all of which are risky with MCAS), and I'm having so many issues that I just need a more permanent option.  I even mentioned the option of having a G and an NJ tube to avoid the surgery.  She said I could go back to the NJ, but it wasn't really a good "permanent" option.  Right now, it seems my only hope of avoiding J tube surgery is if the GI doctor that said he would do it Monday, doesn't run from his word.  If that attempted tube placement doesn't happen, I'm 99.999% sure I'm looking at a J tube surgery.  It's crazy to think I came in here due to blood clots and now I'm looking at possible feeding tube surgery.  Go figure!

Headed out for a little walk :)

On a happy note.... I am doing much better, emotionally, than I was last night.  Our pastor emeritus and his wife came for a little visit, and then I got to take Ezra on a run outside.  Its amazing what some laughter, fresh air, and sunshine does for the soul!  I must say, the man from transport has created many hilarious moments by breaking the hand sanitizer dispenser off of the wall when bringing me back to my room last night!......It still hooks to the wall, but, when used, it can easily fall which makes for quite the entertainment at times...especially with a hospital whacky, slap happy me in the room who is easily amused and not so easily subdued! ;)

Snuggles with Ezra

I think I've about given up on hoping for certain discharge dates....I'll go home when I go home!  I just need to focus on getting this situation resolved, I suppose.  I really miss home, my family, and my sweet baby Bella!

Taking Life One Laugh at a Time...
                                                Allison

A Bit Discouraging. . . .

Allison will update when she feels a little better, but for now, here is an update on how things went this evening. . . .

Well, we came and sat. . . . And now we're going back to the room without a new tube. No one apparently discussed with the doctor Allison's request for a tube made by the same company as the one she currently has and does well with.  In endoscopy, they always place the feeding tubes that have a disc on the inside of the stomach to hold it in place.  Allison has tried one.  It is extremely painful and uncomfortable, fell apart within just a few weeks, and was extremely painful to remove.  It is definitely not something that she wants to live with long term.  So, she is pretty upset and discouraged since she discussed the specific tube with multiple doctors and nurses before leaving her room.  The doctor said they would check and see what they could do by Monday.  Allison is just ready to go home.  Pray that the Lord will work things out so she gets what she needs in the best way possible.  I'm not 100% sure that they are really going to be willing to try something other than what they normally do. We have some ideas as to how we think they should be able to resolve the problem (without surgery) but whether or not they agree is yet to be seen.

Today's Plan

Howdy!

     I now have more info on the happenings for today.  I'm scheduled to be taken down to endoscopy at 4:00 and the actual procedure is scheduled for 5:00....that's what we get for getting up at 6:30 in the morning to be ready! ;)  The surgical team came in again this morning to inform me of the decisions and why.  They said the reason it is being done endoscopically is to make 100% sure the tube is in the right spot so if it flips, we will know that it isn't caused by the tube not being placed correctly and we can move on to other options at that point.  The GI came in later on and talked with me about the procedure, tubes I could use, etc.  I asked him about looking at the stoma from inside to see if they could spot what could be causing the balloon to work itself through.  He said they always look throughout the GI system down to the Duodenum (beginning of the intestines).  If the stoma is really irritated or if there is any problems with the stoma, they will not be able to use it, resulting in having to let the stoma heal.  This means they would not be able to put a tube back in me, the stoma would close, and I would have to have another surgery once it was healed.  I agreed with the whole plan and he left.  The hospitalist came in and I told her what the GI had said and asked if it was possible, if they can't use the stoma, to place an NJ tube while I was still sedated so I would have access until the stoma was healed.  She asked if I was sure, had ever had one before, and did I go home with the NJ.  I explained to her how I more than knew what those were like due to having NJs for over a year and definitely wanted it placed while I'm still under.  NJs are NOT comfy nor fun, but at least I would have some means of nutrition for the few weeks of healing for the stoma.  I figured I could have it placed while I was under from the endoscopy and then removed while I was under for the surgery so I at least wouldn't have the sheer torture of the placement/removal...just the ick of living with it for a little while.  Those memories of NJ change are very, very vivid in my brain even after 2 1/2 years without it!  So, in short, the plan is to do an endoscopy, place a GJ if the stoma is okay, or place an NJ if the stoma is not okay and needs to heal.  The nurse just took some blood for testing and had me sign the consent...now just to wait a few hours! ;)  I will try to update soon after the procedure, but, if I am unable to, you can find updates from my family either on my caring bridge (www.caringbridge.org/visit/allisonworkman) or on Facebook (https://www.facebook.com/Valerie-and-Allison-Workman-269242056563590/).

Allison

My sweet Ezra being all snuggly yesterday.  {Ezra lying on the end of my hospital bed with his chin in my lap and a quote that reads "Any day spent with you is my favorite day.  So today is my new favorite day." -A. A. Milne}

Endoscopy...

Today, my plan was to just get another GJ tube put in and hopefully go home today or tomorrow.  Well, it turned out a bit differently.  The hospitalist came in and asked about what the surgeon had said.  I explained to her the whole situation on why they didn't want to do a surgical J tube and how I was totally willing to just do GJs.  She was fine with that and said maybe we could go ahead and get that done and get me out of here.  I was thrilled with that plan and informed her that I hadn't had anything to eat or drink passed midnight, so I was prepared whenever they could get it done.  They called down to radiology to put in the orders and were informed that the note from the radiologist that had changed my tube from a GJ to a G said that his reason was the fact that he couldn't get it back in place and not that it kept flipping back into my stomach.  With being medicated, I could've easily misunderstood him or forgotten some of what he said, so I'm not upset with the misunderstanding, but it did make sense seeing as how he did seem to try with the wire for ages before calling the surgeon about the J tube.  His note made the other radiologists really hesitant to try to, once again, place the tube.  Anyhow, so surgery team was called again, and yet again, really didn't want to do the J tube unless they had exhausted all resources.  I explained to them how I wasn't dead set on getting a surgical J and if it was possible for the GJ to somehow work then I'd much rather do that rather than the J tube.  They contacted my hospitalist  to inform her of their decision and see if there wasn't something else that could be done.  The hospitalist called the radiologist that actually did this last tube change to see if he would be willing to try again and he explained his hesitation a little farther.  He is unsure whether he is getting the tube completely in the right place because he can't use dye so he is wondering if he isn't quite getting it right and thats why it's coming out of place so frequently.  He really didn't want to try again.  All in all, it was decided that, instead of doing it in radiology, they are going to place it endoscopically so they can see exactly where they're putting it and be assured it is in the right place.  I'm not supposed to eat or drink anything passed midnight and the endoscopy is supposed to take place tomorrow.  I'm going to request that they check my stoma while they're doing the endoscopy to see if they can identify any issue that could be causing the retention balloon to come through my stoma.  Even after upsizing the tube the balloon still comes through.  And even now that I have a PEG, it still gradually works itself into the stoma and actually it has only gotten worse.  Not sure when I'll be discharged, but I don't see any reason (as long as there are no complications and they don't find anything alarming) why I won't be discharged by Saturday.

The new PICC still seems to be clot free as far as I can tell!  Hoping it stays that way.

Thank you so much for your prayers....I really, really appreciate them!

Allison

Hello There!

     When my hospitalist came in yesterday morning, she asked a lot of questions about my feeding tube situation and wanted me to give the G tube a try.  Every time she mentioned that, I just very matter-of-factly said I couldn't.  I have already tried that and failed.  And for some little reason, it doesn't seem the G tube would work since the reason I know when my GJ tube is misplaced is because I start getting sick with formula and meds (because they're going into my stomach instead of my intestines).  At least she was very kind about it and listened to my reasoning.  She then made the decision to talk with the surgical team here to get their insight on the situation.  I came very close to breaking into tears when discussing the tube situation with her because I was so nervous that she would try to force me to try the G tube and not let me have anything else.  One of the surgeons from the team came to talk with me later on in the afternoon and went into much detail on why they don't want to do the J tube.  He explained that the J tube itself would most likely be made of different material than the tubes I know I don't react to, and it is actually sutured in instead of having some other form of retention (balloon/disc/"mushroom").  This would mean that if I reacted to the tube, it would be an emergency surgery to remove the tube versus being able to just easily pull it.  J tubes are still capable of flipping, however, they don't have as much probability as the GJ.  He is concerned with putting a hole in my intestines because of the risk of poor healing due to the MCAS and EDS.  He was VERY good, listened, and was really thorough in his explanations.  He is suggesting, instead of the J tube, that they find a longer GJ, because he thinks what is happening is with the Mic Key Button GJ being a shorter tube, it isn't very far into the jejunum which is allowing it to very easily flip out of place.  We explained how the Moss tube stayed in very well, but I reacted to it, and when we switched to the Mic Key, it started flipping again.  He quickly said the reason for that is because the Moss goes a long way into the jejunum whereas the Mic Key is just barely in there due to it being geared more towards pediatric.  I told him that I was perfectly fine without a surgical J tube...I just needed some type of jejunal access whether it be a J or a GJ tube.  He talked about finding a tube, how this hospital may not have anything longer, and more or less it may take a little while to get everything lined up.  I made the suggestion that I get just any GJ that I tolerate before discharge and then we can continue our search, but at least I would have jejunal access until that time.  He didn't seem to have a problem with it, and he was going to talk to the hospitalist.  Interventional Radiology must agree to this plan as well because they have a choice as to whether or not they accept a doctor's orders and do the requested procedure.

Isn't it SO tiny at the insertion site???

My tiny PICC seems to still be working well.  I have some surface pain and some pain up in my underarm area, but for now it doesn't seem to be anything alarming to me as far as blood clots are concerned.  I'm hoping switching to silicone remedied the clotting issues.  I was informed yesterday that I will be on the high dose Lovenox for a minimum of 3 months, and it could be as long as 6 months depending on the situation.  Thankfully, with Lovenox, I don't have to really stop it for any procedures because if I were to start bleeding, there is a remedy whereas with the Xarelto, there is no known remedy and so nothing can stop you from bleeding out.  I'm still having symptoms of the DVT (Deep Vein Thrombosis) in my right arm, but they aren't quite as bad, so I have high hopes that it is resolving since that PICC line was removed.

I got to go on another little excursion outside after the surgeon left.  It was fun and felt amazing to get out of this hospital room.  Unfortunately, it was a bit warmer and sunnier this time, so we didn't get to stay out quite as long.  I am thankful I got some time in the open, though!

Last night I took a shower, got all cleaned up, and didn't have any food or drink passed midnight in hopes that they will go ahead and do my tube today.  I'm still waiting to see any of the doctors.  She should be in shortly, so hopefully I'll have good news for you soon!  I don't see a reason for me not to be able to be discharged tomorrow or Saturday as long as things go as I hope.....and yet, when does that ever happen in the hospital??? ;)  We shall see!  It has been a loooooooooooooooong 10 days!

Taking Life One More Day in the Hospital at a Time....
                                                                               Allison

Howdy!

    Yesterday evening, I got the new PICC line placed.  That's a story in and of itself.... They took me down to radiology, I pretreated, they prepped me for the placement, and started the procedure.  Well, they get the PICC placed, stitched, and attempted to flush it with the regular 10ml syringe.  It wouldn't budge and then suddenly burst, creating a saline fountain.  Great!  Now to remove the stitches and PICC line and start all over again.  When they got it placed the second time, they flushed it with a tiny 3ml syringe to make sure it worked before stitching it in.  This PICC is a tiny, pediatric PICC line that is literally half the size of what I normally have.  The team in radiology really thought it was too small, but it was silicone and the hematologist really wanted them to use it.  I know I shouldn't complain, but this is a bit ridiculous... its a single lumen which means I have to disconnect my pump to use it and instead of using 10ml pre-filled syringes of saline, we have to draw saline up into tiny 3ml syringes.  So far, I don't have any symptoms of clotting with it, so if it works, I plan to get it switched out for a bigger silicone PICC as soon as I know I'm not going to react to it.  I'm very thankful that it at least doesn't seem to be clotting so far!  Oh, and just a little side note...I can't have any numbing either which they usually use for both the PICC placement and the stitches, so with having it done twice, I was in some serious kind of pain last night and was given some pain medicine.

My sis said I looked like I got into the nurse's cabinet :)

With my right arm having the DVT (Deep Vein Thrombosis), my left arm has gotten the brunt of everything...blood draws, 6 IVs, and a PICC line!  They now have to take my blood pressure in my leg because the DVT in the right arm and the PICC line in the left.




Apparently, after my feeding tube change yesterday, I was so out of it with the pain meds that I had conversations I had no idea ever happened!  Last night, Mom told me "oh, by the way, the Moss tube isn't made by Cook Medical."  Huh?  I said "uh...NO!" in a very confused tone thinking "what dummy told you that??"  LOL!  I had told Mom that and didn't even know it!  I told her that was scary and asked if I told her anything else around that time. :)  Thankfully that was the only wacky thing I had told her.  But I have no recollection of that conversation whatsoever!

With the feeding tube situation... it appears my surgeon isn't willing to do the J tube surgery.  He recommended it either be done here or at Baptist.  Yeah, um, NO to Baptist (no good experiences have I ever had there!).  I've chosen to get it done here if those are my only choices.  I haven't heard anything official from the doctors here, yet.  I got this info from my nurse who had read the doctor's notes.  They have switched my meds to IV until I get the surgery done and can use the J tube.  I understand Dr. B (surgeon) not wanting to make me have a J tube because they are hard to live with, but when there is no other option...well, there is no other option!  Frankly, I'm not all that excited to have a J tube, but sometimes things are necessary and you just live with it.  It had been the choice to either be transferred to a hospital where my surgeon was or to be discharged with an immediate appointment with him and get things done.  BUT, if he isn't willing to do the surgery, I don't really want to take either of those routes! ;)  I just found out via the nurse that they are recommending I try to use the G tube.  I've already tried it in the beginning and it doesn't work. That's how I know my J tube is out of place!  It makes me sick when it flips into the stomach!  I don't know what I'm going to do, but it definitely won't be trying the G tube.  I don't care if I starve to death...I will NOT try that again.  The dietitian came in sometime this morning and told my family (I was sleeping) to have me eat as much as I can, especially of the tortillas and turkey, because that would give me more protein and carbs while I don't have any other option for nutrition.

That's all I know at the moment.  Hopefully I'll have more of a definite plan to share soon!

Taking Life One Day at a Time...
                                              Allison

Unexpected Happenings

Well, as Mom said in the previous update..... The outcome of this morning's procedure was not as simple as we had thought it would be.  I was taken down to radiology to get my GJ feeding tube checked and exchanged if it was out of place.  Turns out, the part that goes into my intestines was coiled in my stomach...again.  The radiologist was trying to get the wire maneuvered into the intestines when he stopped, looked at me, and asked why they hadn't done a J tube.  I explained how my surgeon had said about the retention on the J tube wasn't the greatest and overall it wasn't the best of things if it wasn't totally necessary, and that I needed the G port to drain my stomach.  He told me he'd be right back and was gone for some time.  When he came back, he said what he was going to do was put a G tube in this current stoma and then get me in for surgery for a J tube stoma.  He said it wasn't right to make me do a tube change every other week due to it being misplaced, and it was only going to keep flipping up into my stomach.  I knew deep down that it was only a matter of time before this came up, but just didn't expect it to be today.  So yep, here goes tube surgery #4.  Right now, I only have a G tube in, and the doctor has put in orders for my meds to be done IV until I get a J tube and can use it.  Reality.....I could have surgery as soon as tomorrow.  The hospitalist called in GI and the PA came to see me.  She is going to discuss, with my hospitalist, a possible transfer to a different hospital so my surgeon can do the surgery.  My surgeon only goes to two hospitals in this area and this one isn't one of those, so I either transfer to one of those hospitals or have a different surgeon do it here.  I'm hoping to get to continue with my surgeon because he is amazing, knows me, and is very careful with me.  I'm kind of numb right now.  I guess I'm just still in shock.  Everything is happening so fast.  I'll try to let y'all know when I get some more definite info about this situation.

The hematologist came in and said radiology has a single lumen silicone PICC and he was going to have them go ahead and use that one and get me home.  He obviously doesn't know the newest change in plans with my feeding tube, but his job would be complete once the PICC was placed.  On Friday, radiology said they had one, but it was pediatric and not compatible with my benadryl drip.  I'm not sure if the hematologist is talking about the same one, but I'm just hoping that is a wise option.  He said he was unsure whether or not this actually is a reaction to the PICC line.  I (and everyone else) thinks it is, but he is entitled to his own opinion... that is, as long as it doesn't endanger me in the meantime! ;)  So, I may be having a PICC placed later on today.

Ezra all sprawled out on his back, taking a nap

Just because Mom is obsessed with Ezra's precious nose...
you must admit, this pic is cute! ;)

Well, I'm going to go for now.  I'm still very groggy from the meds I had for my tube change and I'm fighting to stay awake!

Thank you so much for your prayers!
Allison

Quick Update

Allison is out of the procedure and back in her room. The outcome of this morning's procedure was not as simple as we had thought it would be. She will need surgery, but I'll let Allison tell you "the rest of the story" when she wakes up and is feeling better. :)

Feeding tube

Down in radiology for my feeding tube.  Would appreciate your prayers!

Bye Bye "Pickles"

Well, hello there!

   After realizing for some reason some can't follow me via my blog, I've gritted my teeth and made the decision to copy and paste my updates onto my caring bridge for those who wish to stay.

I got a new hospital hematologist yesterday.  I wasn't impressed with the idea when I heard they had changed, but I love this new one!!  He came in and asked if they had gotten that thing out yet.  I told him they didn't because they realized I couldn't have any petroleum based products.  He looked really puzzled and asked "what petroleum based products?"  I told him they wanted to use either a certain kind of antibiotic ointment or Vaseline.  He asked what that was for and when I explained that I had always just had gauze and Coban but they said the petroleum stuff was some kind of seal and "policy", he said he was going to go look at that policy.  He came back and said they were going to go ahead and pull it and he didn't think I needed all the monitors, either.  Mom made sure he knew about the blood clots being the reason for that and he said he still didn't think I needed them because "Y'all (my family) are sitting right here, if she falls out, just call us!"  And then he proceeded to tell me to break a leg...I told him I hoped not! ;)  He is a mess.....What could be better than a doctor who can joke around?  Anyhow, they ended up putting me on an oxygen/heart rate monitor just to be safe and pulled my PICC.  I had to lie flat for 30 minutes and then wasn't allowed to move around much for a few hours.  My arm hurt worse for a little while, and I ended up having some of the pain in my chest, so they did an EKG and labs just to make sure everything was okay.  Everything was fine, and the pain eventually subsided.

Getting my PICC line pulled.

Getting my PICC line pulled.

This morning, after my meds, I got really nauseated and took some zofran.  I'm really thinking my feeding tube is out of place, again, so I mentioned it to my hospitalist to see about getting it checked and exchanged if it is out of place.  She was fine with that and put in the orders for radiology.  Oh, and she was totally fine with me getting it done under anesthesia.  I just can't stand the pain of getting a tube done right now.  SO, they should be coming to get me tomorrow morning for that.

Sweet Ezra snoozing on my lap while I watched a movie :)

My awesome nurse informed me this morning that I could get outta my room for a while and get some fresh air.  So, we gave her our cellphone numbers so she could get ahold of us if anyone came.  Then we headed out...We went outside for a few minutes, I took Ezra for a run, and we just had a blast.  We stopped at the cafeteria for Mom and Christina to get lunch since it wasn't super smelly today.  All in all it was a very fun time and felt so great to get out for a while!

My reactive IV lines.

My IVs aren't lasting long before my skin starts turning red, itches, and hurts.  I'm on my 5th IV since I've been here.

Yep, I've spent too much time in the Medical Inn & Suites! :)

Daddy and Sara came again this evening which resulted in a ton of laughter and silliness!  And, of course, a big game of fetch for Ezra! ;)  I'm gonna miss seeing them every day after they go out of town, but hopefully I'll get out of here soon so we can catch up with them for a few special days together as a family!  I am REALLY hoping the new silicone PICC line comes in within the first few days of this next week.  I'm trying not to get my hopes up too high because it could be a bit longer.

Taking Life One Day in the Hospital at a Time...
                                                                     Allison

Welcome!

Hi!

    I've decided to start a blog in place of my Caringbridge site.  If you have not read my latest update, you can visit www.caringbridge.org/visit/allisonworkman.  I will cross post for a few updates until everyone has a chance to move over here.  If you wish to receive an email notification when I update, you can go to the Follow My Journey tab on the right, below my profile.  If you have difficulty navigating, please let me know and I can try to help.

SOOOOOOOOOO, where do I begin??  My hospitalist came in this morning and caught up on plans from the hematologist.  I really like my hospitalist and I'm REALLY hoping I won't lose her and get another hospitalist after the weekend. :(  She is very interested in learning about MCAS and is just awesome!  I saw the hematologist and he pretty much just reiterated the plan.  They did decide to go with a silicone PICC, because if it was an issue, a PICC is a lot easier to remove than a Hickman.  They did an ultrasound on my left arm today to check if all veins were clear of clots, and they were, so that arm is all set to have the PICC placed.  I was supposed to get this PICC removed today, but that didn't happen because hospital policy says they have to put a petroleum based product on the site to seal it, preventing an air embolism, and the hematologist wants to do it in the daytime when their is a full team on board.  I can NOT have anything petroleum.  I had never had anyone do that with any of my other PICC removals, but yet again, I've never had a clot of this size before.  So, instead of pulling the PICC tonight, either the floor team will pull it tomorrow, radiology will pull it tomorrow, or radiology will pull it whenever the silicone PICC arrives and they do the new placement.  I just thought I was going to get rid of this thing today!  I will be wearing monitors for 24 hours after the PICC is removed just to be on the safe side if the clot were to dislodge and go to the lungs.  I was really hoping to get this over with, but I know there is a reason for this delay, and the Lord knows what He is doing!  At least we know my left arm is cleared for clots.  Radiology actually thought they had a line that would work, but it was pediatric and wasn't compatible with my benadryl.  So I'm stuck, waiting on a PICC to be ordered and arrive.  At least they do plan to order the PICC express which is faster than the normal up to a week of waiting.

My pastor and his wife came to visit today, and that was a nice bright spot in my day!  Daddy and Sara (sis) were here a good bit of the day so we had fun together.  Mom needs to go home for a little while to catch up on some things, but she needs to be here for procedures, so Daddy and Sara came yesterday, too, and stayed most of the day because we don't have an earthly clue when things are going to get done, but as soon as they do, Daddy needs to take Mom home for a while.  We're hoping for tomorrow once we see the hematologist and see what they plan to do with the PICC.  Hospital life always throws a certain amount of spice into one's day! ;)

Well, I think that is it for now.  Please don't hesitate to comment here.  I know I no longer have a guestbook, but I hope y'all won't mind too much! ;) Please stay in touch!

Allison

This is what happens when Mom gets out of the shower.... :) {This is Ezra with a towel "hat" thanks to Mom's creativity}

Snoozing Ezra on the "couch" in my hospital room.