Flanagan Clan

It’s hard to believe that today marks 6 weeks since my injury and tomorrow will be 6 weeks from the time I had surgery. As far as how things are going, I’m doing so much better than I was even a week ago. Things are healing and I feel my strength returning a little bit each day. My incision site is healing up nicely, although yesterday and today I’ve had a little irritation from clothes rubbing against it. I also have two wounds on my left side where the G and J tubes were removed. They are both healing well (at least, from what I can tell), but I’m not suppose to take baths or submerge them for yet another week or so. I’m slowly increasing my lifting limit- the past few days I’ve started picking up Lizzie again (she’s 14 lbs), but I’m not really going much heavier than her. It makes my life so much easier to be able to carry my baby again! It was really quite difficult to not be able to lift her because that was so needed in my care of her. As far as my diet, I’m slowly but surely starting to add to add more normal foods to my diet and it’s going really well. I am chewing the life out of every single thing I put in my mouth, and as such I have become an even slower eater than I was before. I am also limiting my portion sizes to about a cup at every meal. It seems like I’m tolerating it. It’s been really nice to be able to eat meat again. I personally could never be a vegetarian because meat is such a big part of my diet. I have been sticking with ground beef and very well cooked poultry and pork so far, but hopefully once I get back into eating more beef it won’t be a problem. Steak was usually the thing that I always got stuck in my throat the most, so I don’t think I’m going to be trying that for a while. I’ve also been nervous about trying to swallow pills again, just because I really do not want to get anything stuck down there again.

As far as treatment, I will going back to a gastroenterologist on the 12th of January to discuss treatment for my eosinophilic esophagitis. It had been previously mentioned to me that a common treatment is a steroid, similar to what they would use for asthma, although instead of being a mist that you inhale it would be a liquid that I’d swallow. There are other treatments I seem to remember, but this is the one that they specifically mentioned. It is my hope that this steroid will allow my esophagus to stay open and to no longer constrict and make it easier for food to get caught in it. So, I would appreciate that the doctors will be able to find a treatment to help with that.

So, in all, things are going really well. It has been a very crazy last 6 weeks, but things are definitely on the mend and soon this will probably all be a distant memory. I appreciate all your prayers and support during this difficult time in our family!

Today I had my (hopefully) last visit with the doctor who did my surgery. This visit went very well. They say that I’m doing great, healing up nicely, and that everything looks good. He wants me to decide on a gastroenterologist to take over the care of my esophageal condition, and besides that wanted to know what I was doing on my diet. When I said I was still on soft foods and taking things slowly he said that was good, so the plan is that I will continue on soft and very gradually move towards a regular diet as I feel comfortable. The best part of the visit was when they told me they’d take my tubes out! The actual removal of the tubes wasn’t very pleasant (I’ll spare you the details), but it feels SO good to have them out now! I feel like I’m finally getting back to normal finally. It’s hard to believe that I had them in for a full month! No more taping plastic bags to my abdomen every time I want to shower and no more worrying about the boys headbutting my tubes. No more feeling like I’m a walking horror movie every time I look down at my stomach, and no more worrying that clothes are too tight and will put too much pressure on the tubes. I feel free and it’s a beautiful feeling. This has got to be the best Christmas present ever. I can deal with a soft diet pretty well- it’s restrictive, but it’s not as bad as being on purees or liquids- it was the tubes that were the most difficult thing to handle. I feel like everything else is a walk in the park compared to having them in. I’m so thankful for those that were praying that they would be able to come out today, and I’m thankful for all the help we’ve received over the past few weeks. I assume that I am still on a lifting and activity limit (I meant to ask the doctor about it, but forgot to get to it, though my dad said 6-8 weeks, and on Friday it will be 5 weeks since surgery), but I’m definitely regaining my energy levels and I’ve been able to do small amounts of housework, which I’m actually finding to be very liberating as well. I can’t wait until I can really tackle everything on my own again! Well, that is all for now. If I don’t write again before Sunday, I hope everyone has a very merry Christmas!!!

I need to update you on my endoscopy that I had on Monday. I was so nervous the whole day. Check in was at 2 PM, so we had to leave around 12:30 to get up to Seattle. I had been NPO that morning and having a bit of bad pain from Liam head butting me right in the feeding tube the day before, so I took some oxycodine before the time limit where I wasn’t suppose to drink anymore. I only took 1/4 the recommended dose, but it made me dizzy and very loopy. So I wasn’t feeling the best as we made our trek up to Seattle, but at least I was not in pain. They got me situated pretty quickly into a chair to ask questions about medical history, put in an IV, etc. the nurse who did the IV was in training and I know that the only way they learn is to practice on people, but oh my gosh she was really slow about putting it in and it hurt. I was worried that she would do it wrong and have to redo it, but it worked. At least she didn’t miss, which has happened to me a number of times. When it was finally my turn they administered all my medications through the IV and it stung quite a bit. Thankfully once they started doing that the first thing they gave was benedryll which made me very sleepy and not care as much. When I was wheeled into the procedure room they went over a few last things and then the doctor came in. He had done the first unsuccessful endoscopy I had to place a stent in my esophagus (not the one where it tore, but the first thing they tried to do to fix it). He immediately mentioned that I looked a lot better than I had the last time he saw me (which I had a hard time believing because I was really out of it thanks to benedryll). Hr also mentioned that I looked like I lost weight, which was very true since I’m down 10 lbs since this all happened. He explained the procedure one last time and the last thing I remember him saying was that if the esophagus was still damaged he’d be legally obligated to put in another stent. I was not happy about that at all! They moved me onto an x-ray table, which is where they were going to perform the procedure, and the nurse gave me this absolutely disgusting clear gel to gargle and swallow, which was suppose to help numb my throat. I could only get a little down before my gag reflex kicked in, but she said that was good enough. Seriously, in the past 3 weeks I have been asked to swallow some of the yuckiest things I’ve ever tasted!!! After I swallowed the stuff I laid back down and after that my mind is blank… until I woke up in recovery. The nurse had me drink water and it felt weird, but now that I look back on it I’m not sure why. Probably because my throat still felt funny from the stuff they made me swallow to numb everything. After a while she had me sit up and eventually stand, and once I was stabile I got dressed and walked to a different room to wait for Andrew and the doctor. I don’t remember much about this other than the doctor took a while to come and when he did he told us that the stent had been removed and the esophagus was healing well. The best part was that he told me I was able to start a soft food diet, which is still very restrictive and I can’t eat breads or most meat or anything, but it is so much better than the purée diet that I was on for 2 1/2 weeks.

So, currently I’m on soft foods for the next 2-4 weeks, until I can start tolerating normal food (although I’m not sure how to tell if I am tolerating it or not…). I still have my feeding tube and my G tube, both of which I am hoping will come out in a week with my next appointment with my surgeon. Until then I am still on light activity, no lifting, and I’m still supplementing with tube feedings for 4-5 hours every day. In some ways I feel so ready to regain normal activity, but yesterday I can definitely tell that I overdid it because my abdominal muscles are so very achy today. It hurts a lot to bend over because of the tubes. My actual incision site has healed up well (as far as I can tell) and gives me very little pain. For the most part I’ve been able to just take children’s tylonal for the pain, although the head butt incident I mentioned did require something stronger. My sleep schedule is still messed up and my house is very disorganized at the moment, but I can tell that things are getting better and I am so anxious to get these tubes out!!! I feel like the nightmare is almost over and I’m so thankful for all the prayers and help we’ve received during this terrible trial in our lives.

Lizzie is becoming quite the little lady around here. She is starting to grab at everything and is really starting to be aware of her environment. I cannot believe that she is now 5 months old already. Where has the time gone???

Also, I didn’t realize it when I last posted, but that last post was our blog’s 500th post. It only took us 6 1/2 years to get to 500!

Yesterday’s doctor appointment brought some disheartening news. The stent, which had been sewn into place using 6 week dissoluble sutures had traveled into my stomach after only two weeks of being in place. The good news was that since I have been having no pain, it appears that my esophagus has  healed to the point where it is alright that it is no longer in place. The downside is that there is a small risk that the stent might try to pass into my small intestines, which could be quite bad. They said it was unlikely, but with my luck I’m worried it will happen to me! So, I’m watching for signs of extreme nausea, in which case I’ll need to uncap my G tube to relieve pressure on my stomach and then I’d have to contact the doctor right away. We have scheduled yet another endoscopy to remove the stent and assess healing on the morning of December 12th. Until that time I still have two tubes in my abdomen, I’m still doing tube feedings and I’m still on purée diet. I will see the doctor on the 21st to hopefully have the tubes removed, and once I get the green light I’ll be placed on a soft foods diet, which allows for a greater variety of options, but still restricts items like bread, tough meats, etc. At this point I am fine with being on tube feeding (which I’m starting to tolerate a lot better), a purée or soft foods diet for as long as it takes if it means that I will continue to heal and will not be required to spend any more time in the hospital. After the first couple days in the hospital I grew to hate it with a passion and will do whatever it takes to avoid any further stays there! I am busy, active mom of 5 kids and the hospital made time go so slowly and had me so anxious to leave. I thought I was going to go crazy the last few days I was there because it was just so frustrating to be stuck there. I got to the point where I could not sleep at all and would beg the nurses to give me benedryl just to knock me out for a few hours. It was just really bad. The nurses were great and the doctors were very kind, but 30 year old moms should not be in hospitals, they should be with their family- I definitely felt quite trapped to be stuck there.

So, all that to say- I’m healing. Things aren’t going exactly as planned, but as the doctor said, I am definitely healthy. His goal is to get me back to a more normal-ish diet by Christmas, which I appreciate. Until then I am going to rely mainly on my tube feeding, supplement with some puréed food, and pray that my stent will remain in my stomach and my esophagus will continue to heal without the help of the stent. I would appreciate your prayers that everything will resolve quickly and that I’ll find myself soon back to a normal diet and a normal life with my family. Thank you so much!!!!