Faith's Mom's Blog

 As mentioned in my previous post  Faith had to go back to the ER about 6 days following her first stay in the hospital. The reason I took her back was to determine whether or not she was still battling a UTI or if there was something else causing her ongoing fatigue.  Thankfully, the ER waiting room was pretty empty, which meant we could go back pretty quickly. After putting in an IV, they drew some labs and also did a chest x-ray and electrocardiogram (ECG) as her heart rate we really high.  An empty waiting room at the ER!  More Tests  They were also going to have to draw another urine sample with a catheter, which was causing Faith to be super anxious. This time, they gave her something to help decrease her anxiety, which made getting the sample much easier. After a while, the x-ray showed a possible pleural effusion.  The doctor recommended a CT scan to get a better look. Faith was becoming very anxious again and wanted to sit up in bed, so I ...

Faith was hospitalized twice in September. The first time revolved around getting a UTI that was resistant to the antibiotics she was taking. The second time was due to the fact that she had ongoing fatigue and the doctors wanted to make sure the initial UTI was gone and also figure out why she was still so fatigued.  Faith enjoying a beautiful September day Recurring UTIs Faith got her first urinary tract infection (UTI) in 2023. At the time, I would not have even known she had one, but she had a procedure done at the hospital and ended up getting really sick afterward. They tested for a UTI, and it came back positive. There were other things going on at the time, and she ended up in the hospital for 5 days.  She had a few recurring infections after that and her doctor at the time thought she might have a neurogenic bladder, which sometimes happens with those who have cerebral palsy. Her doctor suggested Faith see a pediatric urologist.  The urologist recommended urodyn...

Normally, Faith is the one with all of the appointments but this week it has been my turn. On Monday I had my annual echocardiogram. On Tuesday I had my pacemaker device check and appointment with the cardiologist who comes to Bismarck from the Mayo Clinic in Rochester, MN.  The doctors who come are pediatric cardiologists who also specialize in adults with congenital heart defects (CHD). This saves anyone in the area who has a CHD from having to travel to Rochester each year. It is very convenient! (I do travel to Rochester to get my pacemaker changed, though!)  The Bible verse that has kept me going all these years! When I saw the doctor, we mainly discussed two things: my Fontan and my pacemaker. But first, a little background. I was born with double outlet right ventricle (DORV). Basically, this means both my aorta and pulmonary artery stem from my right ventricle. Because of this, my left ventricle does not really do anything, which is why this CHD is referred to as a sin...

The other day Faith and I were standing in line at the pharmacy, and someone asked her, "How was your 4th of July?" She responded quite honestly, "Terrible!"  Yes, it was definitely not a very fun 4th. In fact, this whole week has been one challenge after another. The only thing we really did for the 4th was go to Art in the Park in Mandan, which was last Friday. Faith found a new tie-dye t-shirt, and I enjoyed a yummy root beer float.  Art in the Park in Mandan on the 3rd I had actually gone with the goal of getting an Indian taco, but it was so humid, I didn't feel like eating anything hot. Because it was so warm, we only stayed for an hour before heading back to Bismarck. That night, I noticed that Faith seemed uncomfortable in her chair, almost like she was having pain. She told me she needed to get out and lie down. I thought maybe being out in the high humidity had been too much for her or that she was having muscle spasms. After she lay down for a bit...

Faith and I barely made it through Christmas before she got hit hard with the flu bug. (Which is why this blog post is a bit delayed!) Leading up to the night of the 25th, we were enjoying lots of music, goodies, and family time.  One event that has become a tradition for us is going to the Nutcracker ballet. This year's performance marked the 8th one in a row that we have attended! We love everything about the Nutcracker - the music, the costumes, the different scenes, the talented dancers, seeing some of our friends onstage, and the seasonal excitement in the atmosphere! Ready to go to the Nutcracker! Of course, the week after the Nutcracker always proves to be a busy one, as it is one week before Christmas! Faith had her usual therapies and while she was at her day program, I would do all of my running around. During one of the gift shopping excursions, I ran into my brother Todd! We had lots of fun catching up, right there at Fleet Farm!  My little bro and I hanging out at...

One of the unfortunate things about cerebral palsy (CP) are the many co-occurring health issues that go along with it. Because of this, those with CP have more doctors, specialists, and other kinds of providers they see on a regular basis. While the CP itself mainly affects the muscles, other areas of the body are affected as well, which results in more medical challenges.  For instance, besides CP, some of other Faith’s health issues include: ·          Gastroesophageal reflux disease (GERD) and other digestive issues ·          Scoliosis ·          Bowel and bladder incontinence ·          General anxiety Because of these co-occurring conditions, we have more appointments than the average person. At times, it can all be a bit overwhelming. Faith enjoying a nice fall day On September 23 rd , we ended up in the E...

Last weekend, Faith seemed to be struggling with a cold. On Sunday morning, I thought she had slept it off, but unfortunately, it hit full force that evening. Because she was so stuffed up, and had a lot of drainage, she did not sleep well that night. I tried to put her adjustable bed up as much as I could, but it still wasn't enough. Around 3 in the morning I put her in her chair where she slept for a few hours. After I put her back into bed, her sleep was still pretty disruptive. Finally, around 8:30 she had had enough and just wanted to get up for the day.  On Monday, we called to cancel her Tuesday therapy sessions. She was bummed about having to miss aquatic therapy and occupational therapy but took it well. I was trying my best to help her feel better by giving her nose spray (which she was actually asking for), keeping her humidifier going, and also doing this face mask thing that makes steam so that she can breathe it in. She calls it her inhaler.  On Wednesday, she ...