Sick pt. 2

Well today was about as boring as they come since I was sick. I was mostly in bed, and Raul played on a blanket on the floor next to me and watched TV. He is so funny with the TV, he will imitate it when they say "hi" or "bye", and laughs at it too. He was content playing with his toys and medical supplies. He took a short nap mid-day. Unfortunately he doesn't seem to like long naps anymore! He really likes playing peekaboo with the corner of the blanket on the other bed, and he thought it was hilarious if I would just say peekaboo (same applies to saying key when he is playing with keys). I have been trying to drink during the day, but for the most part it is still making me nauseas, though I have gotten down some Sprite/water/gatorade. I ate a sugar cookie a little while ago, and it stayed down, but it has made me much more nauseas. My mom is coming tomorrow so that I can go to the doctor and she can watch Raul, and hopefully this time it really will just end in some fluids!

Sick

I haven't ventured out of our room to see if anyone else was sick, but last night I had either food poisoning or a stomach bug. I couldn't fall asleep, and I thought it was just because I had napped a bunch during the day, but then I started feeling sick, and around 2 started getting sick. I went back and forth between lying next to the toilet on the bathroom floor and in bed with a bucket. I tried to sip on water, but that was not a success. I was SO thirsty, but obviously guzzling water would not have worked since sipping didn't even work. Finally I fell asleep for a few hours, and am now feeling a bit better, but definitely low on fluids. I am going to try more water, then move on to gatorade and try to catch up. We had to cancel one of Raul's appointments for this morning, but we had just been there Tuesday luckily. I am thinking it was the food, as thankfully Raul didn't get this!

A Day To Relax

Not much to report today, as we rested and slept most of the day after yesterday's excitement! I changed his bandages and his skin is actually looking really good, though he has been super itchy. Tonight we ate dinner with the other families with babies, and one six week old baby girl is home here for the first night, so that was exciting. When we were getting ice cream, I looked over at the table and Raul and the two year old girl that was sitting on my other side were holding hands; so cute! He is still definitely a little flirt! He is starting to try to say "hi" and "bye", though the two sound identical, but you can tell what he means. Another funny thing he has started is that he says "uh oh" when he poops haha.

What is Raul cuddling in his sleep, you might ask? Oh, just a Foley catheter; the boy loves his medical supplies!

Disaster

Today was a disaster of a day. Raul woke up screaming really early, diarrhea and vomiting, then right as I was packing up to go to his follow-up appointment at the hospital he pulled his g-tube out (balloon still inflated)! It definitely hurt, and he was screaming. It has only been four weeks since it was put in, so I was a bit worried. I stuck another in, then of course, the tape that was closest should not have been used on him, but in my panic I used it without thinking. Now I am dealing with trying to get the tape off without him totally freaking out and it destroying his skin. Half got pulled up at the doctor's office when the nurse was re-inflating the balloon, and it hurt so much that now he won't let me near it.

Anyway, the doctor says they have no idea why he is still spiking fevers. They said that other than infection, the conditions that would cause him to be spiking fevers are all extremely rare, and that it would be unusual for him to have two extremely rare conditions, and I was like, well he's pretty unusual! Then I talked to some other EB families who said it is actually not all that unusual for them to have other rare conditions. We will go back Thursday for blood work and an appointment with the nurse practitioner. The doctor doesn't want them doing finger pokes, so I am not sure if they will get blood or not.

They also gave us a wagon full of more formula and bags for our feeding pump, which was great. It was quite a challenge getting it back to RMH though along with Raul in his stroller! We both took long naps this afternoon. I had taken some benadryl because last night I got a giant bug bite when we were playing outside, and my arm was swelling, so that helped me nap better! Tonight I got Raul to eat off a spoon for the first time in almost two weeks! It took an hour, but he ate pretty much all of a container of baby bananas. I fed him in the dining room, and he watched a group of adults with special needs who were having a cooking class. I am hoping that we will get to have an early night tonight, as today was a long day!

New Friends

The customary RMH picture

I am going to try to do my new posts at night, as that just makes more sense haha, so here you go. We went to the hospital late this morning to work things out with the financial office. Things went smoothly; they had accidentally sent us bills before putting in that he had 100% charity care. After that we walked around the lobby a bit, and ate some ice cream. Walking out of the cafeteria we saw Robin, Raul's inpatient speech therapist. Of course he played shy and pretended he wasn't trying out new "words"! Then we headed to the grocery store to stock up before my dad left. My dad zoomed Raul down the aisles in the cart, which he thought was really fun. In the toy aisle I tried to hand him a tiara, and he made the funniest face I have seen him make (like, "are you crazy??"), so then I handed him some toy guns and he grinned. I don't know how he would even know which were "boy toys", but he is such a boy!

When we got back to RMH Raul played with my dad for a while, then when my dad left he took a nap. Tonight at dinner we met some of the other families with little kids. And a side note, the family we met last night had their baby this morning, and he is doing well! There are a bunch of kids around Raul's age, and their parents take them to play outside after dinner, and they invited us. Raul thought they were so cool running around the playground and riding tricycles, though we mostly hung out with a 4 month old baby while her mom chased her two year old. At the end one of the little girls was coming up and babbling Raul, and he was being a little flirt. Then he was watching two of the kids go down the slide, and laughing hysterically, but he didn't like doing it himself. All the kids went in around dark to get ready for bed, but I'm sure we will get a chance to play with them again. A few of the families will be here until at least late winter, so it was nice to meet other long term stay families!

Progress

We had a nice night last night. Dinner was catered Indian food by a family from India who came to the Ronald McDonald House here, and eventually moved here because of their son's condition. We talked to the dad some, and also two families staying in the house. One of them had adorable identical twin boys, and the mom was having another baby this morning! We stayed at dinner talking to the other families pretty late. The Indian food was delicious, and a nice change. They also brought a whole table full of toys for the kids, and since we left at the end, they loaded Raul up with more toys! His favorite is a really soft bunny, and he has been snuggling with it a lot.

Only one scream-fest over night, luckily, but we still woke up to a puddle of poop, ugh. We skipped one feed yesterday as Raul was having a lot of tummy trouble, and we were hoping he would do better overnight without the dinner-time feed. Unfortunately, he has still been gagging a lot this morning, so I guess we will just stick to schedule! Doing his meds. is getting easier, though he hid his g-tube cream from us last night, and we still haven't found it! Luckily we had another tube from the hospital that we found this morning.

In a little while we are heading over to the hospital to take care of some business, and then this afternoon my dad is heading back to Boston.

For Shandra

Here are the videos of Raul laughing that I told you I would get :)

A Visit To The Zoo

This morning we took at trip to the zoo! We had brunch at the Ronald McDonald House, then hooked Raul to his feed and got ready to go! Raul's pump is pretty finicky, and it wouldn't work in the carrying case, so we just hung it on the stroller. It was funny, because I didn't hear the pump when it beeped that it was finished in one of the monkey houses, but another family with a little boy with a g-tube pointed it out as they had thought it was their pump. Luckily it is only about a ten minute drive to the zoo, as I was worried about Raul having stomach trouble in the car. I didn't realize how hot and sunny it was, so Raul and I were a bit over dressed, and we hadn't brought his hat or sunscreen for us (but luckily his stroller had a cover). We did half of the loop, but then headed back because it was too hot, and we were getting tired. Raul mostly liked watching all the people, it was really crowded, but also liked the bears and a rhino. We are wondering if he is nearsighted as he didn't seem to notice a lot of the animals we tried to show him, but he liked the ones he saw! The inside rhino was definitely his favorite, as it was close, and was moving around. There was also a baby orangutan that reminded me of Raul, because it had sticking up hair and a pot belly with skinny legs. We stopped at the pharmacy on the way back to get some supplies, and now Raul is napping on his play blanket, and hopefully we will be able to follow suit!

We Made It

We made it through our first night! Raul slept about 14 hours, and I got a pretty good night of sleep as well, though I started waking up early like we did in the hospital. The hardest part so far has actually been all his medicines. I have made a chart to keep track of them, but there are just so many! He fell asleep at 7 last night, so when I did his meds. and all that at 9, he got kind of mad. Since he is low to the ground in the pack n' play I had to take him out to put the cream around his g-tube, but he got over it quickly and went back to sleep luckily! I ran his feed over the whole time I expected him to sleep so we wouldn't have to get up all night to tinker with it, and that seemed to work well, other than putting us slightly behind for the day. When Raul woke up and started rolling over, I saw that he was in a puddle of poop, yuck, though he was more annoyed by the fact that I had to change his clothes. No throwing up yet, though he has been gagging some this morning. Hopefully doing it more slowly overnight helped with that feed. He is also super itchy, but we give him a slightly higher dose of atarax at home, so that should help. Not sure yet what we are going to do today. We are going to brunch at the RMH soon, then we may take Raul on a little adventure later!

Too Cute Not To Share

I was looking back through my old pictures of Raul today, and wanted to post some more from when I first knew him (4-6 months old). Cute as always, and so tiny! At birth Raul weighed 5 pounds, and was 19 inches long; he is now 18.7 pounds and 31 inches! He still looks small, but has made huge strides over the last two years! I am glad to have gotten to spend time with Raul starting at such a young age, as it has helped me to understand him and his condition better.











If you haven't already, scroll down to see my post on our discharge today!

Discharged

Well we are doing better than we did last Saturday; we have made it back to the Ronald McDonald House! Raul spiked a temperature this morning, which was getting higher right before we left, but they gave him tylenol, so hopefully that will bring it back down! Raul was definitely nervous as we walked to the car, but that's not surprising given that he hasn't gone farther than the front of the hospital in two months! He cautiously observed others cars as we drove, and other kids as we were in the lobby of the RMH. He is now lying on a blanket on the floor playing with some of his toys he hasn't seen in a while, and trying to watch the TV up on the desk. He definitely misses the flat screen over his bed like in the hospital! We have traded in the mini princess pack n' play they gave us before for a bigger green one, as there was no way Raul was going to fit comfortably in the old one any more! Luckily they had a bigger one for us to use! We arrived to lots of packages waiting for us as well, which were fun to open. Now Raul looks like he is getting ready for a nap, so hopefully we can both have naptime soon!

And to all the hospital staff: thanks so much for caring for BOTH of us over the past two months. We appreciate all that you have done for us. You made being in the hospital for so long much more bearable! Please pass the blog along to others at the hospital who would be interested in keeping up with Raul :)

56 days...

The number of days we have spent in the hospital since we got to CO. Some days it feels like we have been here forever, but other times it's hard to believe how long it's really been. But I guess when your baby knows how to work the equipment, you know it's been too long! Despite the fact that we arrived with him having a low grade fever and diarrhea, and he will be leaving with similar symptoms, a LOT has happened in between. The biggest being his g-tube, which has made giving meds. and keeping up nutrition a lot easier. We have certainly had issues with it, but overall it was a good decision. Due to his EB, and his immune system is general, Raul has been getting sick again with infections every time his antibiotics are stopped. It seems like it will be a battle to keep him "healthy" and out of the hospital, but hopefully this round he will be out longer than a couple hours! Developmentally he has made great strides during this hospitalization, which is wonderful. He is such a smart boy! He will be followed closely outpatient, and will also receive outpatient OT/PT/Speech therapies.

56 days ago:

Today:

Water Play

Sorry for not updating for a few days, things have been busy. I was discharged back on Wednesday after some IV hydration, rest, and testing. Those days were very hard for me, as I was not allowed to help with Raul's care, and could only be with him during the day (I had a room next door). It was especially hard the first night on the 8th floor as I had expected to be allowed to share a room with him like we had on the 9th floor, but we were not allowed to. That night he also had surgery at midnight to place a femoral line for access, and I was worried about not going down with him for that, but of course he did great! He had that line pulled after a few days, and has been on oral antibiotics since. After a few days of fevers, he has finally been fever free for two days. Now the only problem is that he is not tolerating his g-tube feeds. Ever since the high fever last Saturday, he has been throwing up a lot with feeds (sometimes just a bit, and sometimes the whole thing). We have slowed the feeds down, and put him back on continuous feeds overnight, but he is still having trouble. He also has some granulomas around his g-tube site, which look very sore. Luckily he is a trooper, and despite being cranky, has still been having fun playing. Tonight we did some water play, first in the sink and then in a bucket, and he had a lot of fun!

It Was Bound to Happen

Well, Raul and I have had a busy couple days. On Saturday around noon he was discharged, but unfortunately we never left the hospital. I hadn't been feeling great, and we went to the ER with the hope of me being able to get some fluids and be good to go. That did not happen, and I was admitted to the cardiac floor for monitoring with him with me. Once up on the floor, we took both our temperatures, then went right back down to the ER as he had a high fever again. They tried to get an IV in him down there, and it was just torture, which ended in his whole right hand being one big blood blister. Eventually they admitted him to the cardiac floor as well so that he could stay with me. We were able to stay together that night, which was nice. The next day I was cleared from a cardiac standpoint, so they decided to move us back down to the 8th floor where we had been the past six weeks. When we arrived they said we could sleep in the same room, but then that changed, and much to my dismay they separated us.

Around the same time that discussion was happening, two different teams came to try to start IVs on Raul. We were able to draw blood, but were not able to get a line in (not a surprise, regular IVs don't work for him). So then it was decided that he needed to have urgent surgery to place a central line that night. I was not allowed to go with him, so he went off at midnight for surgery. We got baby monitors so I could hear him in his room, and they were supposed to wake me up so I could check on him when he got back, but they didn't, so that was frustrating. This morning I was allowed to go back to his room with him, and learned that they couldn't get in the line they wanted, and ended up doing a femoral line, which has been really painful for him.

The reason they put the line in was to start antibiotics again since he had high fevers and a high white count. He has been feeling pretty sick today, and napping a lot. Then this afternoon they decided to pull his femoral line, as it is just likely to get infected too. They are going to start an oral antibiotic, which should have been started in the first place, as it treats all the infections he has had so far. It is more than a little frustrating that he was put through surgery and a lot of pain when he could have just had an oral medicine.

I, on the other hand, will hopefully be discharged this afternoon. I have gotten some rest and some fluids, and hopefully that will be enough. I am looking forward to being able to sleep back in Raul's room again, and not have to be separated from him when he is so sick.

Hope for Raul