Faith's First Extended Hospital Stay

It's hard to believe that Faith is 19 years old and has never had a major illness or extended hospital stay since she was in the NICU. The only other time she had to stay in the hospital was when she had her g-tube placed when she was two years old. That is, until now. And to think it all started with her having a simple outpatient procedure that had nothing to do with the reason she was hospitalized. 

Day 1: Thursday - the Procedure 

Faith and I got up extremely early as she had to be at the clinic for her outpatient procedure. The procedure was a lumbar puncture in order to do a test dose of medication called baclofen, which would help reduce high muscle tone and spasticity. If the results were good, and it helped her muscles relax, we would have the option (in the future) of inserting a baclofen pump so that she could receive the medication continuously via a catheter in her spine. 

I stressed the importance of giving her anti-nausea medication before the procedure because I know how anesthesia affects her. The procedure was very quick and after she woke up, she was happy and relaxed. Her physical therapist came to see her and seemed impressed with the results. The physician who ordered the test also came to check on her, and he was happy with the results, too. I was relieved, because she seemed to have sailed through this without any major complications. She had to lie on her back for about 6 hours before she could sit up. For Faith, this is not an easy thing to do as she much prefers to sit up in her chair. However, they were able to sit her up in bed a bit to help her drink some water, juice, and eat some belvita bites. 

Faith sits up about 6 hours after her procedure and seems totally fine. 

Finally, she was able to sit up in her chair and looked happy and relaxed. About 45 minutes later, though she began to doze off and looked a little pale. She began to retch and try to throw up. After a little bit, she said she wanted to lay back down. The nurse and I were both confused by this because she couldn't lay down while throwing up, plus, she never asks to lay down. Even in the past when her tummy was upset, she wanted to be sitting up. She also began crying that she wanted to go home. I told the nurse we would be okay to go home because I figured the anesthesia was upsetting her tummy. She gave her a dose of anti-nausea medicine, which seemed to help. 

At home that evening, she wanted to go to bed right away, which isn't like her at all. I sat with her on the edge of the bed and all she could say was, "Mom could you please pray for me." Eventually she began to fall asleep, but then was up every couple of hours throwing up. 

Day 2: Friday - First Trip to the ER 

After not sleeping well, Faith wanted to try to sit up in her chair, so I put her in it, but it seemed to make her feel worse. I asked if her head hurt, but she didn't really say. I called the department where she had the procedure and told them Faith had a rough night with lots of nausea and vomiting and that she seemed worse sitting up in her chair. The nurse practitioner said she might be having a reaction to the baclofen and told me to call the doctor who had ordered the test. 

I called him and he said he doubted it was the baclofen because it shouldn't be in her system anymore. I told him I was concerned about dehydration, and he confirmed that I should take her to the ER. She managed to be able to sit in her chair for the drive there. At that point, she was throwing up bile. As I drove, I felt completely helpless as she continued to throw up all over herself in the van. 

Finally at the ER, I checked her in, and we had to wait about an hour before going back. In the waiting room, I felt so bad for her, it was all I could do to keep from crying. She looked so pale. They eventually called us back and took her vitals. Since her vitals were fine, we had to go back to the waiting room and wait for something to open up. We sat there with 3 other families and a guy who was groaning in pain from a kidney stone. It was miserable. I just prayed silently that a room would open and also prayed for all the other people in the waiting room that they would get the help they needed.  

When they called Faith's name, I felt a little guilty for taking her back before kidney stone guy. He had resorted to yelling at the receptionist that he was in pain and needed to be seen NOW! But my Mama Bear instincts were in high gear, and I quickly wheeled her back. They put in an IV and started her on fluids and anti-nausea medication. After a couple of hours, she seemed to be feeling better. They took some labs as well. They also said if she continued to vomit, they could do a CT scan to make sure nothing was going on in her digestive tract. 

After a while she began asking for juice. She also ate a few small bites of a cracker. We had been there for about 5 hours, and she began crying because she just wanted to go back home. I didn't think we would need the CT scan, so we went back home. I realized that we didn't have any apple juice at home and I really didn't want to stop to get any. As soon as we got home, I texted my mom and asked if she could bring over some juice and also some food for me. All I had eaten since Thursday morning was 2 bowls of cereal and a bowl of oatmeal. 

Thank goodness for the apple juice because that is the only thing Faith wanted to eat or drink. All through the night she kept waking up asking for more juice. I really thought the worst was behind us. 

Day 3: Saturday - Ambulance Ride to the ER 

Faith woke up happy and said, "I feel so much better!" Her face had more color to it, and she was actually smiling. I felt so relieved. I asked if she wanted to get in her chair and go watch TV, which is something she hadn't really done since Thursday. She was excited to do that, so I got her in her chair and wheeled her to the living room. 

Right after I turned on the light she said, I think I need to go back to bed. I thought maybe she was just feeling too weak to sit up. She hadn't eaten anything since Wednesday before the procedure. I put her back in bed and asked if she wanted to try some food in her tummy. I diluted some of her blended food and put it in her tummy. She kept it down. I also gave her water, plus she kept asking for sips of juice. 

Late that morning respite care arrived so I could take a much-needed nap. I filled her in on everything that had been going on and we talked about the possibility of Faith having a spinal headache or a migraine. Before laying down, I gave Faith a little bit more diluted food. Faith then asked to sit up, so her respite care provider sat up with her on the edge of the bed, and she began throwing up all over again. 

I knew Faith would be OK with Chris, so I went to lay down for a bit but didn't really sleep as I kept wondering what could be going on. After Chris left, Faith still didn't feel the best, so I called the doctor who had ordered the initial test (he had given me his cell phone number and told him to call if she wasn't getting better). I told him she seemed to get worse when she sat up. He said she may have had a little bit of spinal fluid leak and told me to just keep her laying down for a couple of days and that the fluid should build back up on its own. He asked if the injection site was swollen or red or anything, and I told him it looked good. He just said to keep any eye on her. 

Faith had fallen asleep and I went into the living room and just began to cry. I felt so awful for what she was going through. I was also getting very scared for her because she was so sick. I really didn't know what to do. I didn't think I should keep her home, but I didn't how to get her back to the ER if she was having trouble sitting in her chair. All I could do was pray and ask for guidance. I also sent out some texts and asked members of our church family to pray for her. 

My sister-in-law sent me this scripture, right when I needed it the most! 

When I went in to check on Faith, I thought she felt really warm and took her temperature. It was 101.3! She woke up and I told her I needed to take her back to the ER. I asked her if she could try to sit in her chair just one more time. She agreed to try it but as soon as she sat down, she wanted to get back out. I had no choice but to call 911. I told her she was going to go for a ride in the ambulance. I reminded her about the episode where Mr. Rogers showed his television friends the ambulance and what a paramedic was like. 

As we waited, I scurried through the apartment trying to pack up what I thought I might need. The ambulance guys arrived and Faith asked them for high-fives. They were great with her! After about a 10-minute ride, we arrived at the hospital and this time, she received immediate care. The doctor was in the room right away ordering every lab under the sun. 

They put in another IV (Faith's 3rd in three days) and got her going on fluids and anti-nausea medication. Her vitals were not so great as her blood pressure was really low and heart rate unusually high. They drew lots of blood for the lab work, like 7 vials of it. The other test they wanted to do was a urine sample, which Faith had never had before. It took three tries to get a catheter in her to draw out some urine. Thank goodness for the music of Michael W. Smith, which I played for Faith on my phone to distract her. 

They also wanted her to do the CT scan, which she handled like a pro. When we got back to the room, she was feeling better and kept asking for juice. They couldn't give her anything, though, until after the results of the CT scan. Finally, the test results began coming back and the urine sample showed a uterine tract infection (UTI). There were no abnormalities on the CT scan. The doctor said they would begin treating her for the UTI but he also wanted to do an MRI to ensure there was no complications from the lumbar puncture. He also wanted to admit her to the hospital. Thankfully, her vitals had stabilized, and they had a room open on the peds unit. 

Day 4: Sunday - Admitted to Hospital 

It was about 2:30 in the morning when we finally got up to a room. Thankfully I had grabbed my glasses and contact lens case, so I could at least take them out and still see! Faith was super tired but could not sleep. I tried my best to get comfortable in the reclining chair and as soon as I would get somewhat comfortable, Faith needed me for something. That first night I didn't really ask for help getting her changed or trying to get her in a more comfortable position. There were a few times she asked to sit up in bed, so I sat her on the edge with me but then she wanted to lay right back down. I was just so used to looking after her that it didn't really register I could get the nurse to do these things for me! Faith really wanted me to lie right next to her in bed, which is the only time both of us got a few hours of sleep. Of course, the nurse was in early to draw labs so we didn't sleep for long. 

That morning I thought about how crazy it was that they found she had a UTI. At home, there were no symptoms of that at all. The only thing that may have indicated she had one was the night before she kept asking to be changed even though she wasn't going to the bathroom because she was so dehydrated. I thought maybe she was sore in her back where they did the procedure, and she didn't know how to verbalize that. I wondered if she had never had the lumbar puncture if the UTI wouldn't have been caught until it had gotten much worse. 

All that day Faith was very quiet and not feeling well at all. We did have some visitors and even though she didn't feel like talking, Faith was still happy for the company. She also wanted to make some phone calls. She wasn't very talkative, but she just wanted to do something to pass the time. She didn't want to watch TV or her tablet. She was also very restless and kept trying to move around to get comfortable. I knew her back was sore from laying so much, and I asked if they could give her something for that, which they did. 

That night, Mom came to stay with Faith while I went home to get some much-needed sleep. Faith wasn't too happy about this, but I knew she would be okay with Mom getting the nurses if she needed them. On the way out, I explained to the overnight nurse that I was leaving for the night. I asked if she would be okay doing Faith's meds without me through her g-tube and about changing Faith and repositioning her. She just looked at me like, "Uh yeah, that is my job!" 

It felt so weird being in the apartment at night without Faith. I went into her room and realized she had thrown up all over her sheets and they were in the wash, so I did some laundry and made her bed. I sat in the living room and prayed and read Psalm 139. I knew that God had made Faith and that He knew exactly what was going on with her. I simply needed to trust in His plan. 

Day 5: Monday - One More Test 

On Monday I woke up and got back to the hospital as quickly as I could. It's a good thing, too because they were just getting Faith ready for her MRI. I found out I could not go into the room with her because of my pacemaker. Since Mom was still there, she said she could go in. They gave Faith some Ativan to keep her relaxed and she got to listen to music during the test. Faith stayed calm and did great! 

After Mom left to get some much-needed sleep (and a visit with the chiropractor after sleeping in that chair), I sat with Faith and just waited around for the test results. I noticed she wasn't at restless and she actually took a nice long nap. I was trying to keep friends and family updated so I spent that time texting and sending messages. I also put out a message on the parents of kids with special needs Facebook group asking if anyone's wheelchair-bound daughter ever felt pain sitting up because of a UTI. I received a few responses. One mom said her daughter needs to be in a tilted position if she has a UTI as she is uncomfortable when sitting upright. Later that evening we talked to some of our Inspire friends over the phone and it was the first tiny smile I had seen from Faith in a couple of days. 

The doctor came in and told me the MRI showed no abnormalities. I asked about a spinal headache, and she said if Faith had one, she would have a severe headache. I told her we don't know that she doesn't. I explained that Faith isn't really able to verbalize where she is feeling pain or what kind of pain she is in. The doctor just said that we know she has a UTI so let's treat her for that, first. 

That day they also wanted to get some liquids into her. Part of the reason she was nauseous was that her tummy was completely empty. First, they put some clear Ensure through her tube to make sure she could keep that down. They then wanted to proceed with some commercial formula. They knew I did a blenderized diet at home for Faith, but they said it was against hospital policy to bring any blended food in for her as they didn't know the exact content of the food. I was like, well I could tell you exactly what I put in there and how much, but they still wouldn't go for it. I decided it was one battle I didn't want to fight. I figured it's not like it would be very much and for very long (hopefully!) 

That evening they gave her one ounce of Jevity. It is super rich, and her tummy was rumbling after they gave it to her. They were also checking her blood sugar and after getting just one ounce of the commercial formula her blood sugar was 196! Faith had seen the color of the formula in the bag (it was cream-colored as opposed to the green stuff at home). After it finished, she said, "Now I know what a milkshake tastes like!" 

I told them they needed to dilute it quite a bit or else she wasn't going to tolerate it. Thankfully, though she kept it down. She was also able to get off the anti-nausea medication. Later that day, they gave her a diluted feeding, and another one overnight. 

Day 6: Tuesday - Finally Feeling Better 

Faith and I woke up around 7 after getting a pretty good night of sleep. One thing I needed to do that day was go over to the Heart and Lung Clinic for my pacemaker appointment. Faith said she would be okay with the nurses for a couple of hours. She knew to call for them if she needed help. But I also knew she would call for them just to have something to do! Sure enough, the second I walked out the door, I heard her call, "Nurse! Nuuuuurse!" 

My appointment went okay. I have about 18 months before I need to get my pacemaker battery replaced. I just got it replaced in June 2021, so it didn't last that long, even with the new lead they put in. I saw my pacemaker doctor from Mayo and he said when I get it replaced, there might be some more options available with different features to help make the next one last a little bit longer. I hope so!

Back to Faith...she was fine when I got back. Unfortunately, the nurse didn't know how to find Truth Fellowship Live on her tablet (which is the only thing she wanted to watch during most of her stay). The only other little hiccup was that they hadn't secured the extension to her Mic-key button, so the feeding leaked onto her shirt. When they went to change her clothes, she asked, "Do you have any tie-dye shirts here?" 

I could tell she was feeling so much better. Even the nurses were commenting on how much better she looked than yesterday. They thought sleep and some calories helped to perk her up. I also attributed the sudden turnaround to the hundreds of people who were praying for her. I was still nervous though about how she would do sitting in her chair. 

That evening, the nurses transferred her from her bed to her chair. She sat there for a few seconds and then got a big smile on her face. "Finally!" she said. I had her chair tilted back and after about 20 minutes I put it upright. I asked how she felt and she said, "It's a miracle!"

Faith is finally able to comfortably sit up in her chair! 

She ended up sitting in her chair for 3 hours! An anesthesiologist had come in to talk to me about the possibility of her having a spinal headache and he said she might have had one, but they sometimes resolve on their own. He said he would not have recommended the blood patch procedure on her, considering all that she had just gone through. He said he would only do it as an absolute last resort if she continued to have trouble. 

After that Faith kept asking when she could go home. We all told her that if things continued to go well, she could go home the next day! 

Day 7: Wednesday - HOME! 

Faith and I both ended up sleeping until 10:00 a.m.! They no longer did morning labs because her potassium levels had gone up to normal. The only things she was getting was feedings and antibiotics for the UTI. Unfortunately, she lost her IV twice during her time in the hospital and the night before it had started to come out, so they had to put it in her leg. She had one more dose of antibiotics to get through the IV before they could take it out. 

They also wanted to do 2 full-strength Jevity feedings and see the doctor.  Faith was pretty impatient for the doctor to arrive...she was so ready to get out! The first thing she asked when she saw him was, "When can I go back to work?" He didn't realize that "work" was her day program. He told her she should probably stay home and rest for a couple of days. 

After all that, we started getting ready to go home. Just as we are packing up, we got a surprise visitor - Uncle Todd! She was soooooo happy to see him. A little while later Mom came in as I had asked for her and Dad's help to get Faith home. Somehow, we had accumulated several bags full of stuff that we had to get back home. 

Faith is ready to bust outta here, with help from her uncle! 

My dad went with Faith and I to the pharmacy so she could stay in the van while I went to pick up her antibiotic, which she would need to take for the next 3 days. Then it was homeward bound. She was so happy to see Albert (her fish) and her room. It had all been quite the ordeal and we were both happy and relieved to be home. 

We are so thankful for the wonderful care she received while in the hospital at St. Alexius. The nurses were amazing - from the ones in the ER (like Emma who Faith said reminded her of Auntie Amber), to the ones on the pediatric floor - Brittany, Jessica, Janelle, Pam, Cheryl, and Melissa. They were all angels and I never want to forget them. I am also thankful for all the prayers and help from my parents, especially my mom for staying over one night and for being willing to help wherever needed. It also helped to get visitors to pass the time. 

One final thought is that I'm pretty sure the baclofen did not cause anything. When I talked to the health coach from the hospital over the phone, she said she had a UTI once and didn't feel well at all and just wanted to stay home in bed. She said the anesthesia probably exacerbated the nausea and vomiting since it went through the kidneys. I think everything just happened at the same time, so it was hard at first to pinpoint the exact problem. I'm not in a hurry though to do anything medical related for a while, and I don't think Faith is either! 

Some of the gifts Faith received.