Eczema,  Family,  National Jewish Health,  Titus,  Uncategorized

National Jewish Health Atopic Dermatitis Program, Day 2

Titus and I (Matthew) had an ok night at the hospital. I made sure to use the bathroom before Linda and Mariya left as it would be pretty much impossible once I was the only one with Titus. I wasn’t looking forward to diaper changes either as they usually take at least two people when the baby is this itchy.

Titus’ first stretch of sleep was about two hours. During that time, I made some final arrangements for my math subs back home and blogged about our day. The nurses had asked that I not swaddle him like we normally do, so I didn’t even though I really wanted to. I didn’t see how he could sleep if he started itching. Sure enough, around 11 pm he started itching his face with his sock-covered hands until he woke himself up.

He was not happy. He was itchy and uncomfortable and started crying loudly. The nurses had him all hooked up to the monitors, so I’m sure they were at their stations watching his heart rate go up to 150+ bpm. I swaddled him because I knew this would happen all night if I didn’t. I tried feeding him some breast milk that Mariya had pumped, and that calmed him for about 20 seconds and then he was tired of it. The nurse came in and offered to ask the doctor about some medicine to help him sleep, but I asked if I could try to get him to fall asleep first. He did fall asleep after about 10 minutes or so, and I continued to hold him while I sat in the big rocker.

We both slept for about 1.5 hours and he woke up again at 12:45 am. The nurse didn’t come in this time, and I tried every strategy I knew to try to get him to calm down. We watched a couple cartoons, I tried laying beside him in bed, we sang, etc. He finally fell asleep again in my arms in the rocker at 1:15 am. This was his best stretch of sleep, as he woke up around 7 am.

Titus was excited to eat apple sauce, banana, and sweet potato for breakfast since his favorite food (breast milk) wasn’t available. The nurse came and had me get started taking him out of the wet wraps. She left me to do it while she went to get numbing cream for his arms. They will be taking a blood draw for a bunch of medical and allergy tests this morning. Taking him out of wet wraps, covering him in lotion, and getting him dressed again is a challenge by yourself. His skin was looking quite a bit better today. Dr. Dutmer came in and visited with us just a little, and said he would be back later in the afternoon. I asked him about organic vs. conventional produce, since the kitchen here uses conventional, and he said as far as food allergies go it usually isn’t a problem. However, organic is better so it is a good thing to do at home.

A little later, CNA Lauren came to get Titus’ vitals. After that, we watched some cartoons. Around 8:30 am, our new day nurse, Bradley, came and got us to do the blood draw. We went to another room so that Titus wouldn’t associate our hospital room with the pain. There was also a child life specialist, Courtney, to help distract Titus during the draw. She brought bubbles and an ipad with several games. I held Titus while Bradley worked on finding the veins and Courtney distracted Titus. I warned them that Mariya has super tiny veins and Titus has inherited them.

After a few minutes of visually looking for veins, Bradley agreed with me that this was going to be a challenge, and he went to find the nurse manager. When she came in, right away she said, “Oh, I can tell you he has a good vein on his head!” 🙂 Great. They went ahead and tried the arms first though. First try on the right arm was unsuccessful. Titus started crying. Crazy how they stick the needle in and move it around trying to find the vein. Second try was on the left arm (now Titus was really screaming), and they got it to work. PTL! Last time we went to get blood drawn, they didn’t even try because his eczema was bad and they couldn’t see any veins. Once Titus was bandaged up and we left the room, he calmed right down and was fine.

When we got back to our room, Mariya, Linda, and Charlie were back. We ate some breakfast and started his first bath of the day around 9 am.  For this bath, Mariya and I did all the creams and wet wrapping, while our nurse and another doctor watched. The doctor had never seen it done before (he was observing for the day). We did pretty well since we’ve been practicing at home. Afterward, Titus went down for a nap easily and slept for two hours.

During Titus’ nap Mariya and I went to  a parent group about sleep. We aren’t the only ones who don’t sleep… There was one lady there with two kids who are sick, and she said she hasn’t slept in seven years! A lot of the things talked about were kind of boring, like the science behind sleeping, but there were a few good ideas shared as well. It’s comforting to know we are’ tithe only ones dealing with this.

After the meeting we ate lunch. Titus skin continues to do better although he is still itchy.

After lunch we had a psyc appointment, which we were unsure about. The doctor assured us that they assign a psych specialist to all patients, and it’s not because they think we are going crazy. However, the nurse let us know that it is optional, and it does cost money, so we might want to look into it and opt out.

Dr. Dutmer and Dr. Rabinovich came and looked at Titus in the afternoon. They are pleased with his progress. They said maybe tomorrow we can do a skin prick test for possible allergies.

After that we did Titus’ second bath. For this bath, we only use vanicream as a moisturizer. They only want to do the steroid creams in the morning and the evening. Right after the bath we put cream all over, wet wrapped him, packed up our stuff and headed home for the day. It was only 4 o’clock when we left the hospital. We have the same hospital room the whole week, so it was nice to be able to leave some of our things there.

Before we left, our nurse let us know that a swallow test was on our schedule in the morning, and we needed to be back to the hospital by 7 am. We would also need to bring some of the foods that cause his gag reflex.

The weather here in Denver has been pretty mild this week. Lows in the 20s and highs in the 40s.  We haven’t had any rain or snow, but it has been cloudy most of the time. Today it was clear in the morning,so Linda and Mariya got to see all the mountains on the way to the hospital.

It almost seems unreal being here at National Jewish after reading so many stories about it. We are thankful that Titus is making good progress. Thank you for your continued prayers and support.

3 Comments

  • Jessica

    Thank you for posting. We arrive at NJH on Monday, so I’m very curious about your experience. My son is 3, and in my opinion, his eczema is not as severe as Titus’. We are praying for Titus and your family, and we look forward to meeting you!

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