Well, where do I begin?
Before I even begin this story, I have to say thank you first, to GOD, ALL of our church family, family, and friends. Without Him and them, I wouldn’t have been able to endure this new chapter in which I’m living. I specifically need to thank my very dear friend, Shirley (last name I’ll omit), who has been there for us from the beginning. Until you have a tragedy such as ours, you truly never know who are your friends. I (and Calah) have that in Shirley. I’ll never be able to repay her for her ever-loving kindness and in-the-moment times that she’s been there. I know I could’ve called her at the moment it all began and she would’ve been there, no questions asked; that’s just who she is. Thank you for allowing God to use you so greatly. You mean the absolute world to me and I love you very much.
A few months back my daughter and I were exercising at a nearby fitness facility; Calah is very active and performed extreme workouts. During a particular workout, she mentioned that her legs were weak, and she ended up quitting early; I remember thinking that it was a strange thing for her to
mention. For many months earlier she would express, all the time, how exhausted she was, but we all would attribute it to several days each week of leaving very early in the mornings for her Nanny position, which lasted to mid-day. Then she would get little rest, go to church a couple of those evenings, then go to the fitness center between 10:00-11:00 p.m., workout until 1:00-2:00 a.m., and do it all over again the next day. She also had another babysitting job and a couple of cleaning jobs, which she performed weekly; add all of that together and we have a very exhausted woman. After noting her reaction at the gym that day, we decided to visit Doug, a referred health nutritionist, in Rochester, Michigan. When she gave him her testimony and told of her symptoms, he attributed her situation to stomach issues (he’d later find out that it was that and a bit more). He suggested a few supplements, and a 70% fiber and 30% protein diet. He also suggested bone broth, which I’m told helps immensely with a lot of situations. In addition, Doug told Calah to take a one week sabbatical from exercise so that her body could rest and rejuvenate and, while she did take it, the rest and rejuvenation didn’t happen. As the days proceeded, illness that we noticed that day at the gym was becoming more prevalent, and she was getting weaker by the moment. Finally, on the following Thursday (over a week later), she was so weak, she nearly passed out in the shower. I’d had enough with her being ill and, seeing that nothing was helping, I called the doctor’s office and was able take her in the next day. That was a difficult morning for her because she needed help dressing, and she could barely walk. After I helped her dress, she had a lot of additional help from her not-so little brother, Malachi. After we arrived at the doctor’s office, she went through the usual questions and the doctor sent her to their lab for blood work. We were to hear something the following Monday, but we didn’t have to wait that long because, several hours later at 12:15 a.m., on July 29, 2016, Calah received a call that would forever change our lives. A technician from the lab stated that she had concerns about some numbers in Calah’s tests, but she was particularly concerned about Calah’s liver. Calah was also anemic and dehydrated. I spoke to the technician and asked what she would do. She said, “If it was me, I would take myself to the hospital.” Without hesitation, we went to William Beaumont Hospital in Troy, Michigan. We didn’t wait a terribly long time to get registered in the emergency room. When they called her in to ask the initial questions, take blood pressure, etc., we watched the male administrators (one in particular) have a hard time with the blood pressure readings. Because we couldn’t see the monitor from our angle, we couldn’t understand what was the issue. He asked for a new reading; he was still baffled. He asked that a child’s cuff be used; again something wasn’t right. He went back to the original cuff, to no avail. Still we had no idea what was the problem but they left it alone and sent us on to the next stage of the emergency. When we arrived in the private triage emergency room, we finally found out why they were having so many blood pressure issues–it wasn’t the monitor, or the cuff-it turned out that her blood pressure was 185/134; no wonder they looked like they were confused and concerned. They took her vitals and did blood work (several times, actually), and we waited with bated breath for them to tell us what was going on with her liver. When the doctor came in, of all the things he mentioned (liver wasn’t one of them), I think the only thing I heard him say was that she had kidney failure. Technically, she shouldn’t be alive today. She is a walking, breathing miracle who God kept here for a greater purpose, and for that I’m most thankful. She was running on nothing in her body, but all on God. It was by His grace that He saw fit to keep her alive. You know when you’re on a roller coaster and you feel your stomach drop? That’s how it was for me. Because I needed to be strong for my daughter, I had to show the same face that she had when she heard the news. As a matter of fact, she simply said, “Ok”. Although I have a toughy for a daughter, I thought she would’ve shown some torn emotion. She’s like my husband, though, and not me. Like a trooper, she accepted the news as if life didn’t just hand her a bowl of lemons.
She was admitted that morning and we endured what would be a gruesome week of blood draws several times a day (at one point I had to put a stop to it because it was just getting out of hand), attempting to regulate blood pressure, and deciding how to proceed. She was visited by her Nephrologist, Dr. Jerry Dancik, and he educated us on the future. I can’t say I heard much, but can honestly say that later I’d find it wasn’t informative enough for anyone with a life – threatening disease.
While at the hospital for all those days, I would go to the chapel every chance I got, and would just weep; I’m very thankful for those private moments I had with Him. There was a moment I called a specific friend and she made arrangements for her young daughter to go with someone so she could come pray with me. Initially we sat and talked for a bit, and then went to the chapel. I don’t think I released what was in me, but I was able to let go some of the heartache which I was living. If someone felt the Holy Ghost while I prayed, then sobeit. I couldn’t stay quiet when I prayed to Him; it was quite impossible.
While Calah was in the hospital, we dealt with obstinate nurses who didn’t like to give answers for your all – consuming barrage of questions; we went in this blindly and needed to understand what they were doing and what was going on; only when I asked questions did I truly get answers, and not always understandable; they weren’t very forthcoming with information. There were nurses whom you’d be happy to never see again, to awesome nurses you wish would be on schedule 24 hours-a-day. We dealt with nurses who don’t have a clue that as a Mom (maybe she’s not one), or even a patient, that there should absolutely be NO issue with my questions about what they were giving her, when, and why (thus, one nurse I was happy to say goodbye, and perhaps, with my need-to-know questions, she was happy to leave–who knows).
Then we dealt with a disturbed (drastic understatement) roommate who constantly called the nurses station and played the nurses just as a joke (her words). She was moved to a different room with more seclusion so she would no longer disturb the patients.
Because my daughter has the biggest and most loving support group (actually throughout the country, I quickly realized), and a lot of friends (that photo doesn’t do it justice – we used almost an entire waiting room),
At one point, Calah had enough visitors at one time that we had to retreat to the visitor’s lounge. When she was transferred from her original room on the 3rd floor (a step above ICU), she went to the 5th floor. While we went out, they gathered all of her possessions, gifts, and flowers from her 3rd floor room and I heard they had to use a cart (and extra hands) to transfer everything. I was told that the people on that floor were envious of the love she received. Before she arrived in her 5th floor room, everything was lovingly placed throughout the entire width of the shelf with the window view; it was absolutely beautiful. Unfortunately it all had to be removed except her flowers and balloons (supposedly due to being a fire hazard) – – why make the shelf that size if it’s gonna be an issue? ￼ which had to be kept in one corner.
On the 3rd floor, most of the staff was really kind to us and, because she had a nice and considerate roommate, they allowed us several of her friends at one time (provided we kept it down). Even with all the heartache and unknowns, we had a good time; the 5th floor not so much-she had her first roommate whose family was extremely loud (she said she was Italian and admitted they were a loud bunch). Though we couldn’t hear our own conversations, we soon realized she was a nice woman and we would rather put up with the noise than deal with Calah’s last roommate (and her husband), who was very subtle in listening in on our conversations, and must have reported our visitors because it didn’t take long to meet a nurse who not-so-kindly told us that we couldn’t even have more than 2 FAMILY members in our room (at this point I really got upset because my Mom was there from her home of 4 hours away and I couldn’t even be in the same room as her, my son, and husband–there’s something wrong with this). Needless to say, I wasn’t happy AT All in that while I had to longingly watch my family be with my daughter, I had to wait in the visitor’s lounge or in the hallway across from my daughter’s room, while said nurse went about her business. Funny how when you know that you’re being considerate to the other roommate by asking if she needs us to close her curtain the rest of the way, or you are doing everything you can to be just quiet enough, that she would retaliate anyway because she didn’t like the activity and love which my DYING daughter was receiving. I’m sorry but I won’t apologize that we have the best church family and friends, and they would do anything for my daughter and my family, including all coming together in a crowded space to give support. I wonder what they would’ve done if her prior roommates entire Italian family would’ve arrived. Or perhaps another large family-oriented group. I’m sorry if people have a hard time accepting that, and their attitudes and how they handled the situation showed exactly that. Funny how near the end of our time on that floor, that roommate decided to intersect herself (after eavesdropping) in our conversation (we never much spoke with her previously) by asking about my daughter’s singing, and later got a bit personal with me when I was packing up the rest of my daughter’s things. I didn’t care to share with her considering she was the one who spoke against us to the head nurse. But being the fact that I needed to die to my flesh, I engaged in her questions and was then happy to take home my daughter.
Let’s Backtrack a Little Bit When She was on the 5th Floor
Shortly after, Calah was scheduled to receive port surgery and a blood transfusion (yep, she was anemic), so that she could immediately begin hemodialysis. So the following Tuesday is when it all began. She was hooked up to this crazy machine. It literally aids in assisting her kidneys to do their job, which isn’t working in her. In the hospital she would maintain this dialysis for 3 days, 3 hours per day, then off one day, then one more session, and then she was released to go home after Saturday’s treatment. It was a lot of trips back and forth (even with many hands) with all of her personal items, and gifts she received. We were very ready to go home (of course I stayed the entire time, only to go home a few hours a couple of days during the week so that I could shower and do a few things, and pick up extra clothes for her and me).
It was quite the transition with all of this life change but obviously one that needed to be done. She began her outpatient dialysis again that next Tuesday at a nearby dialysis facility. The people there are great but Calah and I was overwhelmed with the forward information we received. It was very hard to swallow when we were told that instead of continuing with the port she surgically received, that she should get what is called a fistula (another surgery) and that when she gets a kidney transplant that, “Oh, your new kidney will only last for 30 years and you’ll have to get on the list again and get a new one”. That is not exactly the information I desired to hear the very first day of her outpatient treatment. Not only was it overwhelming but, because I was already heartbroken that we have to endure this as it is, it just wasn’t the time to throw this on us. A couple of days later someone else came in and started talking once again about the fistula and, because I could not much more endure and discussions, I actually asked her not to say anymore; It was too much for me to bear. She quickly complied and since then has really kept an eye on us (in a good way). She’s always asking how we are. She makes me feel like we’re more than just my daughter’s circumstance; I felt like I truly began to gain a friend.
Calah began this world in a lot of pain. Her birth was traumatic, and after enduring 8 long months of crying and colic, we finally relented to a friend’s encouragement that we take her for a chiropractic adjustment; she was night and day. She stopped screaming, the colic ceased, and she smiled for the first time EVER. Though her back and neck issues ceased momentarily, they awakened as she got older. In her early teens we found that while she had severely crooked teeth, and TMD, those things were the cause of unending migraine headaches; thus the beginning of OTC pain relievers which actually wouldn’t do their job. Through the stress of a dental school’s inability to make sound decisions, and constantly changing their plans on how to proceed (at one point it was said that part of Calah’s jaw and four near-front teeth needed to be removed), they clearly didn’t know what they were doing. Needless to say, we quit going. I had enough of the roller coasters of changes, emotions, and feeling like there’s no help. Can you imagine the feelings for my young teen daughter? I did some research and found Dr. Doolin of Rochester Cosmetic Dentistry. He answered all of our questions and made us feel more at ease in the one short appointment with him, than we received in the two years at the dental school. He started working with Calah with his special TENS machine, which allowed him to create moulds to begin jaw alignment, and offer relief from her jaw pain. He soon removed her wisdom teeth so that it would allow for the application of her braces she would receive from his recommended nearby orthodontist, Dr. Reynolds of Spillane & Reynolds Orthodontics. Calah gained a group of friends with Dr. Reynolds and his staff. After 2 1/2 years of adjustments, gummy smile correction, and reduction/no migraines, she is happy with her gorgeous smile.
As soon as Calah was physically and mentally able, she resumed as much of her exercise regimen as possible
. She is considerably weaker than before but she maintains her stamina and desire to push through so she can go back to participating in some of the things she thoroughly enjoyed.
Calah’s diet is not one in which someone would show excitement. Because her situation is so extreme, she must be on a low sodium, minimal lean protein, low phosphorus, low potassium, low calcium diet. The inside circle is not her friend. Although the dialysis machines do a good job of eliminating the toxins in her body, they do not do it perfectly or completely. She needs to be tremendously careful of her portion/daily intake of all types of food. What can filter through our kidneys probably in a moment cannot be done the same with Calah’s. Her kidneys are at 5% function. Her dialysis machine is technically her artificial kidney, and she only has toxins removed three days per week (essentially every other day then skip two for one session), while ours is constantly being eliminated .
Fast forward to October 9, 2017
We’re learning day-to-day on how to handle Calah’s situation and her daily activities. There are days which she may do very little and becomes exhausted. Then there are days where she does a lot, and, again, she’s exhausted. It may be different from one day to the next.
When Calah was in the hospital the first couple of days, she had excruciating neck pain from a nerve that was out of alignment. We thought we could count on our chiropractor to make a hospital visit so that she could be relieved of some pain and stress. That didn’t work out quite the way we had hoped and he never responded to my voicemail message. Thankfully, her best friend, Lydia, shared Calah’s story with her employer, Dr. Chris, of Discover Chiropractic. He didn’t hesitate to take time out of his busy schedule to visit Calah and alleviate of her neck pain by giving her an adjustment right in her hospital bed, with a promise that she would come see him when the time was right. It wasn’t long before she felt relief from her pain. It was one less thing she would have to work through with all she had to endure.
She continues to receive her dialysis treatments 3 days per week. We go to a good facility where they truly seem to care about their patients. There was a time when we were helping her decide which facility she would attend for this stage in her life. We were trying to make it convenient and knew of nearby location from a previous friend who was a patient. That facility didn’t immediately have an opening so Calah was placed in the Sterling Heights location. When the time came for the desired facility to call that they had an available spot, Calah chose not to transfer, as she decided she was pleased with her current arrangements (quite an oxymoron, actually). She is a vibrant, positive young woman, and not only did she not want to be placed in a smaller and (we heard) quieter facility, the people who tended her also didn’t want her to leave. They like her personality in the large room, and the staff likes to be around her; they are very good to us.
Calah’s visitors didn’t end at the hospital. While she doesn’t get the activity in her current location as she did in the hospital, for the most part she is not without at least one person each session; there have been times when they bring us 3 visitor’s chairs. We haven’t had the issues as we did in the hospital. I hope people are lifted in their spirits at the positivity when we’re all together, and pray to God they don’t put a limitation on us. I know she needs this encouragement and support as much as anyone else. It saddens me that each time we’ve been there, at least half of the people don’t have someone to sit with them. I understand that this could be considered a job, or perhaps like an appointment, but, honestly, this is a life which has organs which no longer function correctly. God afforded an opportunity to these people to remain alive-Why wouldn’t someone want to sit beside them just to be there, or maybe encourage them along their journey? Personally, I wouldn’t want to be alone.
About a week ago Calah made good on her promise and started going back to see her new chiropractor, Dr. Chris, of Discover Chiropractic. Because he knows of her situation from a babe, she’s been in to see him several times thus far. He intends on helping her feel better even with all the issues. This past Saturday, I can say that I saw a complete improvement in her physical stamina because, after she had already been out most of the day (only to come home for a bit), at 10:30 p.m. she texted me and said she’d be home later and that “I feel really good, Mom”, she said. She text me again that she would even be a bit later. Needless to say, I wondered if having the activities she did if she would not feel well the next day (she doesn’t usually do well with such activities–sometimes all it takes is a walk around a couple of stores and then she needs to go home to bed). At first she didn’t seem well. She expressed her tiredness. I gave her breakfast and, before long, she was up and trying to do a few things. We went to church and had a fabulous service with our visiting evangelist, Brother F. Barfield. He never did preach because the Lord decided to lead the service in another direction. Calah later admitted, like last week (I had to take Calah home in the middle of service), she wasn’t feeling good, though she purposely did well at hiding it from me. I guess I’ll have to watch her “tells” a bit more closely.
She had the most god-awful experience from what was supposed to be a half an hour ordeal to find out whether her bladder was leaking urine which would in turn damage your kidneys. For the sake of not embarrassing my daughter through this post, I’ll just say that these nurses truly need to go back to get some education to find out where is the bladder entry. Which should have taken a half an hour procedure turned into nearly two-and-a-half hours and as soon as the doctor was finally able to see where the contrast was entering into the bladder and wasn’t leaking out, he was able to immediately say that it was not the issue.
November 30, 2016
Well, as of today, we’ve been through many doctors appointments trying to pare down to what is initially the issue for herb kidney failure. We’ve had back and forth reasoning that it’s blood pressure that cause the kidney failure or its kidney failure which cause blood pressure to elevate.