The hospital...we never want to go back. It's a long story. So here we go...
Isaiah was diagnosed with eczema when he was about 6 months old. Niah had also been diagnosed when she was an infant, so we were already familiar with the recommended procedures: warm to cold quick baths, special lotions and detergents, cotton clothes, steroid creams, and antibiotics occasionally. All of these things offered only temporary relief of the worst symptoms, but his rashes and sores never completely cleared. By the time Isaiah was 2, the creams seemed to stop working completely, and he no longer was able to have even the temporary relief with the medicines.
This past May, Isaiah's dermatologist had no other treatment to offer him. For the past year he had already been on the maximum topical steroid prescriptions, and when he didn't improve on oral steroids, she recommended we see a specialist in Houston, TX. The appointment was scheduled during the time we were in Texas for Ryan's birthday.
When he saw the specialist, we were told that he would need to be on an immuno-suppressant medicine--a medicine given to patients recovering from transplants. We were told that the "alarm" of his body would be turned off, and the rashes would begin to disappear. Neither TJ or I were happy with this recommendation. It seemed crazy to us that we would need to shut off his body's only ability to fight off diseases in order to relieve his rashes. We decided to go ahead and proceed, but we knew that this was not the answer...we HAD to find another option. Our hope for this this treatment is that it would provide a window of relief for Isaiah while we desperately continued the search for a REAL solution.
Because of the risk of contracting common colds,illnesses, etc., we made every effort to not take him out with other people or places that were germ incubators. By the end of the first week of the medicine, his rashes started to go away. By the end of 2 weeks, his rashes were mostly gone...but he still itched. His rashes were going away, but he was still constantly itchy. After communication with the specialist, she recommended that he stay on the medicine an additional 10 days because there were still a few spots on his feet, knees, and wrists that weren't completely cleared yet.
At the end of those 10 days, we were told to stop the medicine and that the "results" should last about 6 months. We had just arrived in Arkansas the previous night for Henry's birthday, and within 12 hours of stopping the medicine, Isaiah's rashes came back. That morning he sat on the bed and looked up at me...with tears in his eyes he asked me, "It's back, isn't it, Momma?" I couldn't help but shed tears because I had to tell him, "Yes". It broke my heart, and I know it was breaking his.
Immediately his rashes came back along with the bleeding sores. Betsy and Alex were also desperately helping me search and research for answers. They helped locate a doctor in Tulsa who specialized in treating children with Autism. Even though this doctor did not specialize in skin conditions, he did specialize in finding root causes for symptoms. We asked if he would be willing to see Isaiah, and the answer was YES!
We had the choice of seeing the actual doctor in a month or seeing his PA within the week. Since the PA worked closely with the doctor, we agreed to see her since Isaiah was miserable! On August 17th, we saw the PA and she ordered several tests, which included a nutritional panel and an allergy panel. When we left the doctor's office, we felt hopeful that we might have some answers. However, the answers didn't come quickly. The weeks went by, and we were still waiting for the complete results. Isaiah was continuing to get worse and worse by the day. Finally, I received a phone call Friday (September 14th), and an appointment was scheduled for the following Wednesday (September 19th)to review all the lab results.
We patiently had to wait out the next few days, and finally Wednesday arrived. Isaiah allergy results were shocking! He was SEVERELY reactive to bananas, gluten, and eggs. Then he was moderately reactive to all fruits and most vegetables and spices. We were told to completely avoid bananas, gluten, and eggs, but we could rotate the other foods as long as they were not repeated withing a 4-day time frame. In other words, he could have apples, but he would not be able to have more apples until the 4th day. We also found out that Isaiah was deficient in several different vitamins, so we would be supplementing those. It was a relief to have a starting point, but the restrictive diet was not going to be easy.
Little did we know that it would get worse before it would get better. That same evening (September 19th), Isaiah started to have a fever, and he was also lethargic. That next day he wouldn't get out of bed. I kept giving him water every time he would wake up, and he would drink it...but by late afternoon, I knew something wasn't right. I called his pediatrician and was told to come in to see the PA. The PA thought that Isiah might be having an infection in his rashes because they were so bad, so she prescribed an antibiotic for him to take. We filled the prescription immediately and began giving it to him right away.
By the next day (Friday), he still wasn't any better. I started noticing a pimple-like spot here and there...but I was really concerned that he still wasn't moving from the bed and he still had a high fever. I called the pediatrician's office again because I needed to know what we should do for the weekend. Since it was close to 5:00 pm closing time, they suggested that we go to the pediatric after-hours clinic. I called TJ and told him what they said, and then I loaded Isaiah up in the van and headed for the clinic. I got there about 5:30 PM. TJ was finishing up a few things so that he could leave work and meet me at the clinic.
After waiting about an hour, we were finally called back to a room. TJ finally arrived just as the doctor came in about 7:00 PM. I had wrapped up Isaiah's arms and legs with bandages, and we now had to take them off for the doctor to look at them. As I removed the bandages, I immediately noticed that the red bumps had completely spread all over his body. This alarmed the doctor, and with the added symptom of stiffness in his extremities, he told us we needed to take him to Children's ER immediately. I asked the doctor if we had time to go home for a moment so we could get our other children settled and to also grab a bag for the hospital stay. He said we did, but we needed to be at the hospital within about 2 hours.
So we went home and grabbed some of Isaiah's favorite things (like his special blanket), and I grabbed a change of clothes for myself along with some toiletries. We made arrangements with some friends to help watch over the girls while we were gone. Finally, we said prayers together as a family, kissed the girls good-bye, and then TJ and I headed for the hospital with Isaiah.
The waiting room was packed, but we actually were expedited through the process fairly quickly. They started the IV in the ER, and began giving Isaiah fever reducers and pain medicine. Of course that sounds easy enough, but it was hard to watch our little guy suffer so much. He would look to us for relief, but all we could do was be there for him while he had to do these difficult things. I wish that I could have taken his place, taken his pain, but I could not. It was hard.
Within about 2 hours we were admitted and given a room for him. TJ helped get Isaiah set up in his room before returning home to be with the girls. He planned on returning early the next day. During the night Isaiah asked to see his sisters. I told him that Daddy would bring them tomorrow to see him. I thought that it was so sweet that he missed his sisters so much!
The next morning TJ brought the girls up to the hospital. They each had brought him a special treat. He was so happy to see them! Isaiah was still very sleepy, very itchy, and still had a very high fever, but his pain level was under control which enabled him to enjoy the visit. The girls couldn't stay long because it was wearing Isaiah out. The plan was that TJ would take the girls back home and then return to the hospital. He would then stay, and I would go home to be with the girls and get some rest. That was the plan...but I didn't want to go. I was truly torn. Isaiah was not doing well. His fever was still dangerously high and the antiviral medications they were giving Isaiah put him at risk for kidney failure. I didn't want to leave our son, but I also knew that my girls needed me, too. It was hard. I also knew that I needed to take care of our new little baby yet to be born, but I didn't want to leave Isaiah. I cried on the way home. I didn't want to be fearful, but I knew Isaiah wasn't doing well, and I didn't want to be away from him if things got worse.
So I prayed...and tried my best to enjoy my time with the girls because they were struggling, too. It was hard on the girls to see their brother suffering. A huge burden of responsibility was on their shoulders to take care of themselves and each other while TJ and I traveled back and forth.
After spending some time with the girls and grabbing a quick bite to eat, I took a bath and then laid down around midnight to try and get some sleep.I was only able to sleep for 2-3 hours before waking up. Once I was awake, I couldn't go back to sleep. I kept thinking about Isaiah and I wanted to get back to the hospital to make sure he was okay. I knew TJ wouldn't be happy if I showed up at the hospital since I was suppose to be RESTING, so I tried to go back to sleep.
I couldn't go back to sleep...and so when early morning arrived, I gathered up my things, said good-bye to the girls, and headed back to the hospital to change shifts with TJ.
When I arrived, I was happy to see for myself that Isaiah was okay. He still had a very high fever, but he was resting with his Dad. The night nurse said that Isaiah had finally been able to sleep, so they were just leaving him alone. I was thankful that they were willing to do that so that Isaiah could rest. He was able to sleep for about 2 hours. It was then time to do all of his vital checks and also to do a dressing change on his arms and legs. This was hard for TJ to watch, so he decided to go back home with the girls. He needed to get some sleep as well, but he also was having a hard time sleeping at home, knowing that his son was in the hospital suffering.
Finally...that evening (Sunday), Isaiah's fever broke! His 105 degree temperature was now around 100. With the change in temperature, Isaiah started to perk up a bit. He still spent a lot of time sleeping, but in between the naps, he was perking up. He was getting bored being in the room, so I asked if I could take him on a walk down the hallways. They said, "SURE!" and gave me a red wagon. Isaiah loved this! The first time I took him out, he was asleep by the time I made the first corner. He was still very exhausted, and still very miserable.
Several friends and family offered to come and visit Isaiah, but he wasn't feeling up to it. He only wanted to see his sisters and Henry. At first, we were not put on any isolation restrictions, but after 2 days, they put Isaiah on isolation restrictions because they said the red bumps were viral and possibly contagious. So, it was a good thing that we actually didn't have a lot of visitors. Mimi and Uncle Will did stop by, but Isaiah didn't want to see them. He wasn't feeling well at the time, but he was willing to ride in his wagon...so I took Isaiah on a ride so that they could "see" him.
I was really surprised that Isaiah didn't want to have visitors, but at the same time I could understand because I have been there before. When you are feeling miserable, sometimes you just want to be left alone. I think Isaiah wanted to have his sisters come because they helped him to feel "normal"...and Henry...well, Henry is just special to Isaiah. They are special cousin brothers!
By Sunday evening, Isaiah was tired of being in the hospital. He HATED the nurses, and he hated the vital/bandage checks. One time he even ripped out his IV, which meant he had to go through the needle sticks all over again. The food was also a HUGE challenge. Remember...we had just been given a list of extreme dietary restrictions/allergies and the hospital hardly had anything he could eat. I was surprised but not shocked to know that all they really had was junk or fake food. We ended up bringing most of his food from home.
So, Sunday was a BIG day. Isaiah's fever had broken, he was starting to feel a little bit better, and we were hopeful that he was recovering. The nurses started switching out his IV meds with oral meds in preparation for a Monday discharge. This didn't go well with Isaiah--he hated taking his medicines! Normally at home, he would have taken them without any problems, but he was tired of the hospital and he was angry at all the things that were happening to him that he didn't like. The nurses said that it was normal for kids to refuse even the simplest things because it was their way of trying to take control back since so many things were happening outside their control.
Before we could be discharged, they needed to make sure that Isaiah could take the medicine at home, so Monday they had a special lady come to help teach Isaiah how to swallow pills. It was really neat how she helped teach him, and it worked! She used a stuffed teady bear known as Mr. Bear to help encourage Isaiah to swallow the pills, and Isaiah loved it! He was also thrilled to find out that Mr. Bear could come home with him.
Isaiah was ready to go home, but the thought of going home made me very nervous. He still wasn't doing well. In fact, his arms and legs looked WORSE then when we arrived. His fever was down, but I was concerned because he still wasn't better, and I knew that once we left the hospital, Isaiah would NOT be willing to come back. I didn't want to leave the hospital just to come back in a day or two. I knew that if we came back, Isaiah would be less cooperative the second time around because he would now know what to expect. Isaiah has been through so much, and we keep asking him to do certain things so that he can get better (like the needle sticks), but from his perspective (and sometimes mine) he wasn't getting better...so in a way it would appear to him that we were lying. My only comfort in going home was that I thought maybe Isaiah would be more comfortable in his own bed...and he wouldn't have to see the nurses or have any needle pokes. Of course it would also be better for our family to be together again and not be spread apart. The girls wanted a chance to help take care of their little brother.
I had talked to Betsy earlier that day, and she told me that they were coming later that evening to visit Isaiah. Isaiah was thrilled to know that his Henry was coming to see him! They ended up arriving around 11:00 PM...just as we were wrapping up the discharge instructions. Isaiah was tired, but he was happy to see his friend.
We had promised Isaiah that on the way out, we would stop by the front entrance to look at the huge bubble wall. He was so tired and worn out, but he sat in Daddy's arms and watched the bubbles for several minutes while I got the van pulled around so we could load everything up.
Isaiah was relieved to get home. I quickly made up a spot in our bed for him. He was soon asleep. Daddy was so tired, but he had the daunting task of getting Isaiah's medicine filled at the 24-hour pharmacy. TJ ended up having to go back to get one of the prescriptions changed from liquid to pills because now that Isaiah was able to swallow pills, it was easier for him to do that instead.
It has only been a day since we have been home...but already he is happier. I am thankful to my sister for making the sacrifice to bring Henry to see Isaiah. It's helped him more than all the medicine, I'm sure! I am thankful that we lived through the hospital visit, and that we have a plan! He seems to be doing somewhat better already with just the few dietary changes. I am hoping that he will feel better and recover quicker with some good homemade soups and yogurts, etc. We are really going to watch what he eats and avoid the no-no list.
The hospital that Isaiah stayed in happens to be the same hospital that Kiahna and Isaiah were born in. It's the same hospital that our new baby will be born in. I told Isaiah that...and he is okay with coming back...as long as HE is not the patient! I completely agree!
This is Isaiah the day before we went to the hospital.
His arms and legs looked very inflamed and infected.
Isaiah's wagon...It was always nice to have a break from the small room.
Visitors!!!
This is what his arms looked like on the day that we left the hospital. They were very raw and oozy.
The Bubble Wall
Isaiah first moments back home...comfy in bed with Mr. Bear.
