Friday, October 30, 2015
Matt is doing fairly well. We are having some issues from time to time with his breathing. A few weeks ago he almost went into respiratory failure. He was not sick or anything and he was actually on 3 liters of oxygen when it happened. He is on night time oxygen because he stops breathing at night sometimes and this occurred in the morning. I tried turning up the oxygen and when that didn't work, I knew he was in trouble. I immediately got him out of his bed and put him into a chair to sit him upright and he recovered. I spoke to the doctor previously about what to do in case of an emergency or if he had some breathing issues. He had suggested sitting him upright since he can move oxygen around much better that way. I contacted his doctor and we did some xrays and even though Matt was not sick it appears that there is some scarring in his lungs from all of those pneumonias and Matt has some damage from all of that. He is not able to move air around very well. We will follow up with the doctor again to see if there's anything more we can do for Matt. He isn't sick and he's doing quite well right now so that is good. We see the head of adult pulmonary at big academic medical center. He is also the medical director over the ICU. He is an expert in ventilation, respiratory failure, acute respiratory distress syndrome and a host of other issues, all of which Matt has had, lol. So I do believe we have the right guy.
Other than that, things are okay here. Will try to post when I when I can.
Thursday, July 09, 2015
It's been a while since I've posted updates and since I've received a few emails, I thought I'd give it a try. It's pretty hard doing anything other than caring for Matt since I really don't have any free time now that he's not in school anymore. Overall, he's doing great. We recently got a new wheelchair for him so I snapped a few pictures with my phone. We had just walked outside to take a walk around our neighborhood to try out the new chair. Matt's old wheelchair was almost ten years old and kept breaking. It was also hard to push. As you can see, Matt's a pretty big guy. He's around 6'2" or so and about 205 pounds. He doesn't look real tall in the chair however his legs are long, his torso is pretty long and he's just a big guy. Tall shirts and pants work better for him but are sometimes harder to find. I thought these pictures were great because he looked so happy.
In terms of my mother, I am really feeling the loss. I think I needed my mother more as an adult than I did growing up. My father passed away when I was 13 years old however it wasn't until Matt was in the hospital all the time a few years back that I really depended on her. I could always call her and tell her what was going on with Matt at the hospital and she was always there to talk to me. As you know, we'd spend weeks and sometimes months in the hospital so that was really special to me. In the last few years, I really enjoyed spending time with her at the nursing home. Although she had dementia, she could still speak and carry on a conversation. She was a very kind and loving mother.
She had many hobbies....she loved ballroom dancing and her favorite dance was the Tango. She played the piano by ear and was quite good. Unfortunately, none of us kids inherited that talent. She loved classical music and opera so we grew up listening to that music. She had a very good voice and worked as a telemarketer in her late fifties before going back to full time work downtown. At around 80 or so she sold her home and moved to a condo overlooking Lake Michigan. She loved nature and eating her breakfast overlooking the lake. She loved people and loved to talk, lol. She was very extroverted. She also loved nature. One of her favorite things were birds, especially the cardinal. She had a collection of birds so when she died, I purchased a curio cabinet off of Craigslist and put all of her birds in there. I took a few pictures of them to show you.
Perhaps most important in her life was her marriage to my father. My father spent 22 years in the Army. He won numerous awards including the Commendation Medal for his outstanding service in Korea. My father was one of seven children. His father died when he was two and my mother told me he had a hard life and all of the kids worked from an early age. When I was going through my mother's things, I came across two letters from my father. My mother and father were deeply in love and I can remember them always kissing before he left for work and as soon as he walked in the door. His letters always started with, "My dearest Joan" and ended with , "Your husband, Bob". He'd write "My Mrs....." on the front of each envelope and ended every letter with, "here are your hugs and kisses". He'd start the letters asking about her, then talk about what he was doing, then ask or comment on us kids and finally he'd give her the hugs and kisses in the letter and tell her the exact time he'd be home. It was really lovely to read. One of the letters I found was on their 16th wedding anniversary (he died right before their 25th wedding anniversary). It was written in 1962or 63 if I recall. He wrote their weeding anniversary date at the top and then wrote to remember this day and night (go Dad, lol). He started the letter off with, "Sixteen years ago we started our journey together....then he went on to say how much he enjoyed being married to her and how happy she made him and how great their life was together. He said he hoped it was as enjoyable for her and it was for him. He went on to thank her for their life together and for her kindness through the years. It was an amazing letter and one I'll certainly cherish. He then went on to tell her that he hoped she liked the gift he sent her. I was touched by the letter and how romantic it was. A few weeks later I was going through her pictures and found pictures of her with the red roses he sent her and the gifts.
I have been missing my mother and it will certainly take some time to get over her death. She was 89. As sad as it was, I was so thankful to have Matthew. When your heart is broken, it's wonderful to look into his eyes. He is such a happy young man and brings me such joy at such a difficult time. I know now why God gives us children. It's to help us go on.
A few months ago I was changing him and getting him dressed. I felt a bit rushed and I looked at him and he was watching me with those gorgeous blue eyes. As I was putting his shirt on, he took his right arm and tried to push it up on the bed as if to help me get his hand into the armhole of the shirt. I said, "Matt, thank you for helping me get your shirt on. I really appreciate that." Matt was smiling and just beaming. I told him that he was a real "gentleman" to help me like that. I said that a "gentleman" was a man that is kind and thoughtful to a lady and helps make her life easier. I said that when he helped me put his shirt on, he was being a gentleman. Matt just loved that. So after that, he tried to push his arm up all the time now because he knows he's a gentleman and that I like it. It makes me laugh every time at the sweetness of him.
Thank you for your concern for Matt and I.
Thursday, September 25, 2014
Last week Scott surprised me and told me he wanted to buy me a wheelchair van for Matt. At first I was reluctant however he really wanted to do this. As you know, we've needed a wheelchair van for quite some time. I gave up my career many years ago to care for Matt and I just couldn't afford one. Last year, I purchased a ranch townhome for us but I couldn't afford to do that and get a wheelchair van. I finally agreed and the only request I had was for a rear entry van. The bulk of the vans are side entry and if someone parks next to you, you can't get the person in the vehicle. Rear entry vans are a little harder to find.
We made an appointment at a dealer that specializes in used wheelchair vans. Wheelchair vans are regular vans that have been "converted" by companies that specialize in wheelchair conversions. Essentially, they lower the floors and install ramps that can be manual or automatic. You also have to bring the person in with their wheelchair so they can measure the width of the wheelchair and the height the person requires. Matt's a tall guy with a large wheelchair so he needs more width and extra length for his long legs.(He got those from his Mama, lol.)
We found a 2006 Dodge Grand Caravan with a rear entry automatic ramp. Here is a photo of the interior the day we brought it home.
Here is a photo of the ramp.
After he purchased it for me, he brought it home and took it in to be detailed (The first photo is after we left the dealer and before he took it in for detailing.). He likes to get this special clay wax done on his cars. I thought it looked pretty nice when we got it (see the pictures above) but it looked even nicer once that was done. He purchased some Weather Tech floor mats for it and then got the oil and transmission fluid changed. (You can see the Weather Tech floor mats in the interior photo above. He did this as soon as we got home, lol.) The clay bar was a couple hundred dollars! Yikes! He spray painted the ramp black and touched up the undercoating on the van. It looks amazing! Then he filled up the car with gas and brought it back. More importantly, now I can take Matt places! There is actually room for two wheelchairs in the van. My Mom is in a wheelchair so it will be great to take her and Matt if I need too.
It's not only great to take Matt places but makes it a little easier on me. Previously, Scott came over on Mondays so I could run errands while he gave Matt a bath. I'd have to run all of my errands in one day plus work. It was a lot. Now, I can spread them out a bit. I took Matt on our maiden voyage yesterday (see photo above) and went to see my Mom at the nursing home. Today we went to the doctor. I am looking forward to going to the Arboretum this fall. I am going to get a membership so we can go more often. That is my favorite place to go in the fall. The van will also be good when I look into day programs again next year. There really isn't much for guys like Matt however now that I have transportation, that may open the door to some other programs. I am also excited to do some simple things with Matt, like take him to the grocery store with me. It's been seven years since I've been able to do this and it's just nice to go into the store with my son and have your family with you. I know other people take it for granted but I can't wait to do this. I love Matt so much and it's going to be wonderful to take him places so people can meet him. I've been talking about him for years and now people can see and meet him. I can't wait.
This all came up pretty fast so last Tuesday we looked at vans and found this one. On Wednesday, I cleaned my car up and sold it. I sold it in under 5 minutes! I was vacuuming my car and the lawn maintenance guys came to do yard work (the homeowner's association hires them) and I thought they might have an interest in the vehicle so on a hunch, I just wrote a handwritten for sale sign and stuck it in the windows and 5 minutes later they knocked on my door and said they were interested. They came back later to pick it up so it saved me from having to list it on Craigslist. It worked out great for both of us! Last Friday, we had to take Matt to a doctor's appointment then we went to pick up our new van. There was another seat in the back that folded down however we had it removed so we could get Matt in the back easier. It's been a very busy week to say the least!
Overall, I love the new van. I especially love the color. It's really pretty. It drives really nice and it's great to be able to take Matt places! We love being able to take Matt out. It's great for Matt too! I thought it was really nice of Scott to do this. You hear about a lot of bad Dad's but you don't hear too many stories of the really good ones. Scott is a great father and he is good to me too. Not many ex-husbands insist on buying a van and putting the title in your name. Anyway, it's wonderful to get out and around again. I had to move some things around in my garage in order to get the van in there since it's so long. I never thought I'd be driving a minivan but at some point, we really needed a van to get Matt around. I've never been so excited to get a car since it was really needed. I teased Matt and told him his Dad bought him a car for his birthday (November). Scott added that there was room for "two" wheelchairs, one for Matt and one for a lady friend, lol. Matt just smiled. He's such a great kid.
Wednesday, September 24, 2014
It's been a while since I did an update but it's been really busy here. I can't tell you how much I appreciated all of your comments after our hospitalization in July. We left the hospital with a bilary drain bag to drain the bile from his gallbladder. As you may recall, Matt was admitted to the hospital last July for breathing issues and it was found that he had a gallbladder infection. They believe the gallbladder infections/swelling pressed up on his diaphragm and collapsed his lung and then he got a pneumonia as well and was on a ventilator briefly. When the antibiotics weren't working, they did a CT scan of the abdomen and found the gallbladder issue. They put in a bilary drain immediately and that routed the bile out of the gallbladder. The gallbladder was sluggish with the infection so they don't want more bile in there. Re-routing the bile gave the gallbladder time to rest and they were able to get rid of the infection. While they can't be sure the gallbladder infection came first, it seems most logical since he hasn't been hospitalized for pneumonia in almost five years since I changed his diet and added Now Foods Organic Coconut Oil. Can you believe that? Almost five years without a hospitalization? Still exciting to write that!
Anyway, the bilary drain stayed in place for six weeks and I had to track all of Matt's bile discharge for that time. I also track his urinations and bowel movements. The bag was challenging to work around especially when changing Matt's diaper since it kept falling off the bed and I was worried it would come out. (You can see the bilary drain bag in the above photo. This photo is from August 25th.) We were told that the drain would be removed in six weeks however when it came time to remove it, interventional radiology informed me it would be changed and not removed. It took 20 phone calls and finally I thought everyone was on the same page for removal however that wasn't the case. The hospital has some serious communication issues and I won't go into detail because it was such a stressful time but the bottom line is that the drain was removed.
As I mentioned, I wasn't given any instruction when I left the hospital. I went online at gallbladder.com to see what foods were recommended. Essentially, it's a low fat diet. There wasn't any foods that I was giving him that weren't on the recommended list with the exception of eggs. That appears to cause problems for many people. I should mention that Matt did not have gallstones nor do we have any family history. They also recommend a diet rich in Medium Chain Fatty Acids and recommend coconut oil. Check! They do caution not overdoing the coconut oil with a gallbladder infection but overall I was doing most everything right. I should also mention that Matt did not have any gallstones or family history and they do not believe his issue was diet related at all since his mostly organic blenderized diet is so healthy. During this time, I also spoke with his dietician who specializes in blenderized diet to see if I needed to change anything. She said no, it's basically a low fat diet. Matt eats whole foods, mostly organic and real fats. He eats around 1300 calories a day. Because he doesn't move much, I have to keep his calories around here or he'll gain weight. He is 6'2" and weighs 202 now and was 209 right before the infection, which was really high for him. He doesn't eat anything artificial and no soy of any kind. I use organic kefir and real butter. His diet is basically 50/25/25 with 50% from carbs, 25% protein and 25% fat. I also wanted to get him on a probiotic when he got home from the hospital. The dietician had recommended one previously but I never started Matt on it. It's a powerful probiotic and after the infection, I wanted to be careful not to stress the gallbladder. I read that that to rebalance his gut bacteria after a hospitalization with antibiotics you should give them a probiotic with 100 billion after it clears the GI tract. Since I wanted a more mild probiotic, I just ordered Andrew Lessman's Ultimate Friendly Floral and gave Matt 100 billion/day for 7 days. I'll be starting his new probiotic that the dietician recommended next week.
Other concerns I had were removal of the gallbladder. I didn't want to do this since Matt is a high surgical risk and because you need your gallbladder. I've read that gallbladder removal is linked to Type II diabetes and poor gut health. Your gallbladder is essential for processing fatty acids and for a guy like Matt where nutrition is essential for good cognitive health and for his central nervous system, I was against gallbladder removal. In my opinion, old school advocates removal and current opinion, or at least those people that value nutrition, feel it's criminal to remove the gallbladder. Certainly there are people who are functioning without a gallbladder however if you do some additional reading on it, there can be issues with diarrhea, etc. after removal. I want the absolute best for Matt and that means optimal nutrition. Unless we have another serious issue, I want to keep his gallbladder.
Other questions I had regarding Matt's issue was whether or not it might be related to his progressive neurological disease. Was that causing the sphincter of oddi to malfunction? (The sphincter of oddi is a muscular valve that controls the flow of digestive juices (bile and pancreatic juice). Matt's disabilities were caused by the ARX gene mutation and there are issues related to pancreas due to the gene mutation however other than that, not much research has been done since there are such few diagnosis. No one seems to be able to answer this.
During this time, I also was referred to a book on Irritable Bowel Syndrome. While Matt doesn't have irritable bowel syndrome, I found it helpful since it covers digestive issues in general. Of specific interest to me was the allergy testing. I had asked for some allergy testing on Matt over a year ago and we had set up an appointment with an allergist and then cancelled it when Scott injured his back and couldn't lift him into the car for the appointment. I am unaware of Matt having any allergies however since Matt is nonverbal, I thought it might be prudent to have some allergy testing done to see if he had an allergies. After his recent gallbladder infection, and after reading this book, I decided to ask for allergy testing. As a precaution, I always keep Benadryl in the house in case Matt ever had an allergic reaction to anything and I knew I would feel better if I had some allergy testing to rule out any allergies. I'd hate to find out I've been feeding Matt a food that he's allergic to! In addition, a few days prior to his admission, I had tried a new food for Matt. I had some organic jam so I gave him a peanut butter and organic jam sandwich as part of his lunch. Was it possible that he had an allergic reaction to the peanut butter? (The peanut butter was all natural, just peanuts and oil however any high fat food like peanut butter can trigger a gallbladder attack.)
I met with his GI doc today. He doesn't believe the peanut butter caused anything. I discussed my concerns over the allergy testing and he agreed to do the blood testing for foods that Matt eats regularly. We had testing done for rice, tuna, gluten, peanuts, beef, egg white and egg yolks. We'll get results in a week or so. Normally, I feed Matt the following organic protein sources each week: organic chicken, organic beef, organic black beans, albacore tuna, organic eggs (from a high quality source-check the Cornicopia Institute for their ratings) and then I'll usually do a soup or repeat some of the sources. Other than that, the GI doc didn't recommend any other changes. I hope the test comes back normal however I'll have some peace of mind either way. I'd hate to be giving him a food that he eats regularly and find out he's allergic to it!
Matt appears to be doing pretty well. One interesting thing that happened after he was released was that all of his coughing and saliva issues stopped. He's had issues with saliva for years and as you may recall, he had botox injections in 2009 (unsuccessful) and we had extensive conversations about surgical removal of his parotid and submandibular glands to reduce secretions. Ironically, not only did all of his coughing and saliva stop, but I didn't have to use his suction machine for six weeks. I used to use it daily. I also had to do nebulizer treatments once a day and sometimes I could skip a day or two but I could never go more than three days without it. Since July 18th, I've only used the nebulizer twice. This is amazing. We are hopeful that this issue continues to resolve the saliva issues however I am sure that may not be the case.
In summary then, Matt is doing quite well now. I took this picture at our doctor visit last Friday. You can see he's lost some weight however he looks pretty good overall. I have to work harder than most to keep him healthy since his body just doesn't work like most people's. He continues to be a really happy guy and I am thrilled he's feeling better.
I have some more exciting news to share with you tomorrow!
Friday, July 25, 2014
We finally went home last Friday, July 18th. Matt was hospitalized from July 7-18th. We were discharged right from the ICU, a hospital first. Typically, we are required to transition to a hospital floor first.
First, I need to thank you for your comments on my last post. They meant a lot to me. I think the hardest part of these hospitalizations is feeling like you are alone in your battle to advocate for your child and to get them the best care. Hospitals don't make sense and the transition to the adult hospital was very different. It was great to hear that your experiences were similar and that you had to advocate as well. I can't begin to tell you how many times I read your comments over and over since they brought such comfort to me. For that, I am thankful.
The hospitalization was challenging on a few levels. The first challenge was that when Matt was admitted from the ER to the hospital, they admitted him to a regular floor and not the ICU. While they had oxygen for him, he needed more. He struggled and breathed heavily from Monday afternoon at 3 p.m. until 11 a.m. Tuesday morning. I had paged the doctor on Monday and was told to bring him to the ER however they should have hooked him up sooner to the Bi-Pap or a different mechanism. I paged the doc at 6 a.m. on Tuesday morning and said that Matt was going to crash (respiratory failure) and asked the doc to see him. He came around 10:30 a.m. Tuesday morning and immediately put Matt on the Bi-Pap and called the ICU team to evaluate and Matt was admitted stat to the ICU. The doc did ask me to text him Monday night, which I did, and he responded, however the ER docs didn't make the right call and admitted him on a regular floor. I knew Matt was breathing hard but I kept telling him to hang on. I felt a bit like a failure not being able to get more care for him since he was working so hard. It's not easy sometimes.
We had a few more snafus during the visit. Matt began vomiting from the gallbladder infection and they had to put the ventilator tubing in. They asked me to leave the room. I can't begin to tell you how wrong it felt to tell Matt things were going to be o.k. and that they were going to help him, knowing that they were going to put the ventilator tubing in him. Honestly, I don't know how much more I can take. The kid has been vented some seven times. It never gets easier. I left the room feeling like crap. Of course, he needed to be vented at the wrong time of day, when fewer people are around, like 4 o'clock in the afternoon. I called my Mom who is in a nursing home and I was just sobbing in the hallway far away from the adult hospital. I left and went to this other building because I didn't want to hear him struggle and because it upsets me so much when he's on the ventilator. My Mom isn't doing so well either so it was a tough call. They took forever to get that tube in and I was sure he had died. I came back to the room, some 40 minutes later (I had asked them to call me when they were done.) and they were cleaning him up (diaper change). I was angry they didn't call me. They honestly have no idea what it's like on the patient side sometimes. Normally, it takes five minutes or so to put in the tube; so this was awful.
If that weren't enough, they had to start more IVs after that and of course he's a hard stick. They had this one guy in there for some forty five minutes trying to get this thing (of course, he was their best guy) and he went through this blow by blow talking his way through this. I almost puked. Nothing stresses me more than medical talk and I hate the sight of blood.
This was probably one of the worst days of the hospitalization-so many things were going on and I just felt terrible for Matt. I kept thinking about why Matt has such a hard life when other guys his age have such great lives. I felt like it wasn't fair, you know.
Scott (Matt's Dad), was really helpful this hospitalization. Typically, I stay with Matt 24/7 Monday through Saturday and then Scott helps on Sunday's. This time, because there wasn't any bed in the ICU, Scott alternated nights so I could get some sleep. He didn't help on his work days but that's o.k. because he works 12 hour shifts. Anyway, he stayed with Matt and the next night I came down and one of the nurse's came in to talk to Matt. I thought she was our nurse for the night however she was just coming in to talk to Matt. She told me how he opened his eyes for her last night (night of the vent). Well, I was rather shocked because Matt's eyes were swollen shut by that time. I should tell you that this was a beautiful filipino nurse and when Matt heard her sweet voice, that kid opened his eyes, lol. I thought to myself that there is a God. After the day Matt had with the ventilator and everything that could have gone wrong, God blesses Matt by giving him the nicest, prettiest nurse he could and Matt loved it. Sometimes, it's the little things that go a long way.
One of the next biggest challenges was extubation. A few days later, Matt was more responsive and his oxygen saturation numbers were better. I can usually tell when it's time to remove the ventilator because Matt has more "awareness" of the tubing and when he wants it out, he wants it out now! He'll cough until he gets it out. I explained that I thought it was time to remove it. There is never a perfect time however I usually know when that is. It's a judgment call and you never know how it will go. I explained this to the resident and he decides that he'll be in charge. I said no, we need an Attending Doctor here. This is the same resident who couldn't draw blood from Matt for a simple blood test and had no clue how to suction Matt properly without gagging him so I knew he wasn't going to be "in charge". Honestly, after 22 years of residents, I don't want to see another one. I didn't sign up for that. I know that sounds harsh however Matt doesn't need to be the guinea pig for residents for over twenty years. It took "hours" for the attending to show up. When he did, he asked a million questions so I knew he was nervous. He wanted to know if they ever needed to put the vent tubing back in after removing it. I told him that Matt needed to be side lying for it and I held Matt's back so he wouldn't roll back and choke. Once the tubing was removed, Matt had an unusual response, for lack of a better term. Matt began to snort/snore while he was breathing. This went on for a long time. I had never seen that before. I should mention that earlier this year, before the doc prescribed night time oxygen, Matt used to have difficulty breathing at times and would make these noises. It's not a snore like sleep apnea but rather I would describe it as more of an impairment. Anyway, this went on for hours and it took 2 days of alternation between Bi-Pap and the various oxygen masks before he could breathe better. .
The biggest nightmare of the hospitalization was the "home meds". I asked to give home meds in the ER and that was fine. Then when I got to the floor it wasn't allowed. Pharmacy came to visit me some four times and an administrator came only to tell me it wasn't allowed. Then after we were in the ICU it was allowed for two days. Then it wasn't allowed anymore. Then when they didn't have the proper seizure medications, Ped Neuro Doc told the pharmacist to get the brand name seizure meds from me so I was allowed to give them for a few days until the hospital decided I couldn't give them. Of course about ten people came to harass me and tell me this, one after another. Finally, I called the New Attending Doc and explained the situation. He said it wasn't allowed and we had to give generic meds. I asked him to tell the staff not to keep coming to me and he said he would however four more people came to argue and tell me not to give the home meds WHICH I WASN'T GIVING. Seriously, they were yelling at me and I wasn't giving them. I couldn't believe it. Of course, Matt was seizing like crazy and I had the brand name meds. And of course, the pharmacy was always late with the meds. As in five hours late one day! Really. Does a patient have to die and does someone have to sue them before we are allowed to give a patient brand name meds when the pharmacy does not carry them? It was horrible. So thank you Canucker for sharing your experience with this and thank you all for your comments.
I took this picture while we were waiting outside for Scott to pull around. We were discharged from the ICU and told to resume our normal routine. Matt didn't not go home on any oxygen, even though he was on 3 liters the day we were discharged. Of course, I put him on oxygen the minute we got home! He did fine. As for the gallbladder, no instructions were given other than draining the bile. They do not believe his case was diet related however I went online at gallbladder.com to see what foods might aggravate the gallbladder and tweaked his diet. I would have thought they might give me some guidelines, lol. As for seizures, he's fine. I was able to resolve the issues with Ped Neuro Doc at the hospital and once that was done, he was involved with Matt's care like he normally is...he does a great job every time. I honestly hope he doesn't retire because I don't know what we'd do without him.
Moving forward, I doubt we'll come here again. We'll see Ped Neuro Doc but I am going to look for a new GI doc and a new Pulmonary Doc at a different hospital.
Matt's been out of the hospital for one week now and is doing well. Breathing is fine. Ped Neuro Doc had me reduce the volume and liquids for Matt which I did...at first he wasn't urinating so I had to add some liquid and volume and now he's urinating fine. The best part is seeing Matt's smile again. He's still a bit quiet and he's lost some weight but he's smiling and his eyes are sparkling again. Life is good. I hope it will be another five years until we need to go back again. Thank you again for your lovely comments. You helped me so much.
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