I’m not sure when this all started. About a month ago we had taken Aiden into the doctor for his eczema, some eating problems and also a diaper rash. These are all things he is currently being treated for in the hospital…but are not the reasons for us starting all of this! That pretty much started Friday night. By the time Travis got home from work that day I was crying ‘cause I had just had a rough day…just figured I was raising a toddler!! Then Saturday evening we had a party for my Grandparents 50th Anniversary, Aiden was extremely out of it, but I assumed he was tired, possibly a cold, or maybe it was ‘cause he had a tooth coming in (which has come in now!) I also thought it was possible that he just didn’t like being around all the people and was acting shy. Then Sunday he was being difficult and we had a dinner that night around a lot of people and ended up leaving early ‘cause he was crying so much. Then Monday he was playing, as long as he was sitting in his car seat. Which we thought was odd…but just thought it was one of the other things. Now this whole weekend he had not been eating well, but I figured it would pick back up once he got feeling better.
Tuesday May 29, 2007
Tuesday went by and he was acting worse, so that night at about 7 we decided to take Aiden to the Kids Care at the IHC in
Wednesday, May 30, 2007
At about 4:30 am I sent Travis home ‘cause I was gonna stay the night with Aiden. About 5:30 they finally finished tests and I was ready to go to bed. I rocked Aiden to sleep and tried to put him in the crib and he woke up and started crying, I did not have the heart to let him cry so I ended up holding him the whole night. I was able to get 2 hours of sleep in 20 minute intervals! They then spent the day hydrating him, giving him fluids and we saw a million doctors! They also brought in a bigger bed so that Aiden and I could just share a bed! Wednesday night I noticed that Aiden was starting to get a little swollen so they decided to turn off his fluids. Wednesday night went pretty good with me sleeping with Aiden in the bed.
Thursday, May 31, 2007
Thursday morning I woke up and was looking forward to a shower…Trav was bringing my supplies for that. My Mom was also coming to stay with me that morning. My Mom had brought Aiden a bunch of new books that morning and we were reading with him and enjoying him when they came in and said that his Liver Enzymes were really bad at that we needed to take him to Primary Childrens via an Ambulance. I later found out that they were worried that he was going to go into Liver Failure because his numbers were around 8000, which is extremely high, it should be around 20 to 60. They started making preparations for that while I cried and freaked out! I talked to Trav and told him to meet me up there and after they found a car seat we were able to get into the Ambulance. We did not get to ride with a siren…but they did turn on the lights. It made me slightly sick ‘cause I was riding sideways, but Aiden slept on the way up there. We arrived at Primary Childrens and the doctors started pooring in. We were put in room 3024 and family started showing up.It was awesome to have all the support, but it go a little overwhelming and so I had to take the doctor into a private room for a few minutes just to talk to him by myself!! The whole day kind of became a blur and a lot of tests were taken and I talked to a whole tons of doctors about different possibilities!
Friday, June 1, 2007
Aiden is way puffy and sick. I did not write down anything for this day and I don't remember exactly what happened. I know there were lots of test, lots of doctors and things were just kind of blurry still.
Saturday, June 2, 2007
Today Aiden required a blood transfusion, and entire liter. One doctor told us it was because he was anemic when he was admitted and then they took a ton more.
Sunday, June 3, 2007
Today actually ended up being a way hard day. Travis and I had reached the end of our ropes. There was a lot of tears shed and not much new happened, we just were feeling a bit depressed. We had visits from family, our bishop, and relief society president. Travis and I both got father’s blessings and Aiden received a blessing as well. After Travis and I felt very comforted and rejuvenated! Travis did go home and sleep, but had a rough time…missing Aiden and I. Aiden also received his NG tube today, so he is finally getting some food! He is so swollen because he is loosing albumin. He is also on pain killers now because he is in so much pain.
Monday, June 4, 2007
Well this was the first day that Travis just had to go to work. We need the money very badly and also want to be sure that Travis keeps a good standing at work. It was really rough for Trav not being able to be here all day, but it’s been a pretty uneventful day anyways! They did have to give him a shot that’s apparently pretty painful and then cut off a piece of skin for some testing, and it required stitches. They called it a biopsy I believe! He did read some books and play today. We think he is doing better because he seems to be fighting things more and in some ways he seems more miserable, but I think in reality he’s just doing better so he has the energy to fight the things that just annoy! He is getting more albumin and an diuretic today as well. He is wrapped from head to toe in guaze. He needs the albumin replaced because it contains zinc, and he cannot heal without his body retaining the albumin.
Tuesday June 5, 2007
Aiden did a little better today. He is still very puffy, but he looked at some books and interacted a little more.
Wednesday June 6, 2007
Aiden was not giving them as many wet diapers and they wanted and so they put in a catheter. He also has a little bit of fluid in his lungs. He played with some toys today. He had a very hard time giving up his bus during the dressing change, it was cute...but very sad. Aiden has a urinary tract infection and so they are giving him anti-biotics for that. He is also on oxygen.
Thursday June 7, 2007
Today Aiden was scheduled for a scope between 3 and 4, so they took him off the feeding tube and would not allow him to eat or drink anything. At around 2 Travis and I were eating downstairs when my little sister Ali came running down telling me they were taking him right now and to hurry. We hurried upstairs to find Aiden gone. I started freaking out and we were running around with my nurse trying to find the OR and finally found it with Aiden sitting there waiting. I was so relieved to finally find him. After the Anesthesiologist and GI took a look at him they decided to cancel the scope because they were uneasy about how fast he was breathing. Aiden had been forced to fast all day in order to get the scope and so I was anxious to get fluids back into him because he was acting way out of it. Two hours later we finally got the go ahead to give him fluids, from the doctor. I was so mad…and the doctors excuse was they had a lot of very very sick patients that made things kind of crazy. Excuse me but that is not something to tell a mother, that her son was not top priority…especially after over a week of being there! We then saw an immunologist later and he decided to send a few labs to see if he had an over-reactive immune system. The fluids in his lungs are improving despite the fact the scope was canceled. He has been on oxygen to help him breath. He no longer has hepatitis. He had re-feeding syndrome so his phosphorus and a few other things are still low, so he is being giving stuff for that. We also found out that his Pancreas Enzymes are high, which means he does not break down or retain fat, which would explain why he has not grown since he was about 10 months old.
Friday June 8, 2007
Today was a kind of boring day. At the hospital that’s a good thing and a bad thing. The bad thing is it means they are not doing anything, the good thing is that nothing horrible happened. We are at that waiting stage, and it’s slightly frustrating! We are still changing his dressing twice a day, one in the morning and once at night. They are still giving him Aldacton daily as well as Bumex to help flush the fluids out. They are also giving him Motrin and Fentanyl for pain and Rocephin 1000 for his tract infection. The biopsy came back today and they are thinking mal-nutrition because of his inability to properly absorb the nutrients. His potassium is a little down today as well so they were giving him supplements for that. Aiden was able to sit up and play with Nana for awhile today, this is the first day that he has really sat up.
Saturday June 9, 2007
We were able to stop doing the dressing changes on Aiden's legs because his skin is looking so much better. He sat up and played again today. They also approved him to have some chips and stuff today so I bought some and he absolutely loved it! He called and talked to Daddy on the phone today, during Daddy's lunch break! He's looking a lot less puffy as well! He still weighs more then he did when he came in here, but is no longer too swollen to sit and color and stuff like that! I also was able to hold him today, and was in heaven!
Sunday June 10, 2007
Aiden no longer has a catheter as of today! We had a flood of visitors today, I really don't think it ever really stopped for the day! My family came up and I was able to sit and visit with them in the waiting room for awhile and people took turns in the room with Aiden! It was so much fun to have them all there because I have missed out on a lot with Amy being here. Aiden smiled a lot today and it was so cute!
Monday June 11, 2007
Aiden is still improving! We still have no idea what caused anything, but are happy to see Aiden doing so well! They decided that we no longer have to wrap Aiden at all now! He is now wearing a cute little hospital gown instead of pounds of gauze! Aiden actually got a little upset at first and tried putting it back on, but soon enough he decided it was okay and enjoyed being lighter!
Tuesday June 12, 2007
Aiden was able to walk around today for a little bit. We unhooked him from the machine and let him run around! Well, he didn't actually run around, he is still too weak to walk much, but he has walked a little bit!
Wednesday June 13, 2007
So today the doctor came in as usual and I asked him how much weight Aiden needed to gain before he could go home.The doctor said he doesn’t look at numbers like that and wanted me to tell him when I thought he should go home. I told him I didn’t know and that it was up to them. He then told me that he thought we could get things going so we could take him home tomorrow!!! Yeah!!! I was very excited, yet nervous! I also found out he is allergic to Eggs, but none of the other tests had come back yet. We were way excited all day, but things were pretty quiet and not much happened. They did do a sweat test to test Aiden for Cystic Fibrosis. They are not thinking it will come back positive since all the other tests they did for it came back negative. I think they are more doing it as a routine process since he used to have some of the symptoms. That night before he went to bed I had to put his NG tube in so I would know how to do it in case Aiden pulled it out after discharge and so I could also change it.It was much easier then I thought it was going to be, but still scary, and I hope Aiden never pulls his out! It has been great to see Aiden so happy today and he looks so so much better!
Thursday June 14, 2007
Aiden was discharged today! Yeah! It was exciting but yet very scary. I had all these doctors looking out for him for two weeks, and now it’s all up to me. I woke up excited to be going home and I packed up all my belongings and waited for the doctors! They came in and said we had to try and do the sweat test for CF one more time before leaving and then we were free to go. I forgot the car seat so I had to call Trav to bring it to me ‘cause my Daddy was taking Aiden and I home! That day many of his doctors that had seen him through the course of his stay came in and said they were so happy to see him doing so well! It was also fun as we were walking to the car saying goodbye to some of the nurses that we had gotten to know! One of my doctors told me that my first doctor had relayed to him that they did not think Aiden was going to make it when we first brought him in. I joked after he left that they should’ve talked to me because of his blessing I knew that he was going to make it! But it was quite upsetting to hear that your own doctors thought that, it makes me feel so incredibly blessed that everything has turned out so well so far. I was trying to count how many doctors Aiden saw while in the hospital and made this list:
5 Physicians
4 Resident Physicians
4 Dermatologists
1 Immunologist
3 Wound Team
2 Ultrascanners
2 GI doctors
2 Dieticians
1 person who did the Echo
3 people for the PICC line
1 Social Worker
1 person for the X-Ray
2 Anesthesiologists
And a million nurses!
It’s pretty crazy to realize by 18 months Aiden has had an X-Ray, Scope, Colinoscopy, Ultra Sound, an Echo, and been put under Anesthetics. I’m happy to be out of the hospital, but seeing as he has been sent home with a feeding tube, I know this trial/adventure is not over yet! We took Aiden straight to my parents house since we are moving in with them and decided to start getting settled there! They sent a nurse to our new home to go through what I had to do to give him medicine through his PICC line and to get everything set up for the neocate that I had to feed him through his feeding tube. She gave me way too much information and I felt wasted my time a bit, but for the most part it was very informative.
Since Discharge
Well I’m writing this July 1st, so a ton has happened!We started off by going to the Allergist on June 18th and finding out he had quite a few severe allergies. He had severe food allergies to Egg, Milk, Soy, Nuts and a mild reaction to Wheat. I was taught how to use an EPI-Pen and then told to get in touch with a nutritionist and GI doctor. I then had an appointment with Johnnie Cook, Aiden’s primary Physician on the 19th.Dr. Cook okayed Aiden to get his PICC line removed and we were very excited! Johnnie also told us that Aiden had “very impressive list of allergies”! He tested positive to everything they tested him for.
Most of the food ones, besides peanuts, they believe he should grow out of. As for the environmental ones they usually do not grow out of them and they do not expect him to. They removed his PICC line on the 20th, it was way weird, they just came to our house and pulled it right out like no big deal. Aiden has seemed happy to have it gone! After being seen by Johnnie we have been passed around to different doctors trying to get in touch with the GI, then finding out it wasn’t necessary to meet with him. I then got passed around for awhile trying to find a Nutrionist, after finally getting online I found out that I needed to see a Dietician, and have now set an appointment for Monday. I have been busy trying to get things ready to move, working things out with Medicaid, getting on WIC, and have been on the phone with doctors constantly. I can’t wait to get him off the feeding tube and get back to a “normal” life! Aiden looks amazing and acts amazing. His Eczema is gone and he has so much more color in his face then he ever had. He is a little angel, except when he’s in a bad mood and then he is so spunky! But, what toddler isn’t!
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