Thursday, September 30, 2010
I just wanted to update everyone that he was alert.
I have put an email into Jude's wonderful neurologist letting him know we are here so he can stop by and see Jude. I have to go home later today because I have to work tomorrow, boy that's going to be really tough. Mike is staying the night..........seeing him sleeping in the two chairs pushed together should be rather comical. I should take a picture!
I will be anxious to get back up here tomorrow night, and be with Jude. Jude is continuing to rest. His respiratory rate is fairly low but they assure us that is just from the pain medication.
Ps ~ I cannot use my cell phone in the PICU, I can only text.
The charge nurse came in today, and she is just so sweet. She said she wanted to let me know that because I said something to her about the poor family that lost their daughter yesterday, she went to the social worker in the hospital. She said she had no idea they couldn't afford the funeral, and it broke her heart. So they have found funding, and I am so relieved! I know it doesn't bring their daughter back, but no family should worry about money at a time like that.
Not sure he is going to graduate to that room anymore.
Wednesday, September 29, 2010
Jude can have morphine every two hours, and the medication wears off EXACTLY every two hours. The nurse came in earlier, and Jude was in a full backbend screaming and losing oxygen again. I said "Hi I am Jude and my drug of choice is Morphine". She cracked up, and gave him his meds right away, and Jude settled down. Poor baby, I hate that he is hurting so much. He also gave the nurse a big scare with elevating his heart rate to 207.
He has stitches around the tube sight, and three small incisions that are taped. We have his little sleep sheep here that sounds like a whale, and his Scout the dog that sings his night night songs. He likes both of those, and they seem to soothe him a bit.
I am alternating between the computer, my book, and the TV when Jude is sleeping. The staff is very nice so that makes things run a lot smoother. I am proud that my little fighter is being so tough. His coloring looks better since the surgery, and I think he will graduate to his big boy room tomorrow.
The surgery team has also been amazing! They were all very reassuring and asked as many questions as they could. Before they took Jude back we laid him on the bed, and we both kissed him goodbye. Suddenly Jude looked at me, and his bottom lip puckered out, and he let out a huge wail. It's as if he understood what was going on....and I think he did. Is it crazy that I actually felt relief that my son was upset before surgery? My heart also ached for him so I asked for a warm blanket. I wrapped him up tight, kissed him on the forehead, and laid him in the arms of the anesthesiologist. She walked him back to the surgery room instead of wheeling him in.
After the surgery they came and gave us instructions on where to go for the PICU. When we got to the waiting room there was a family crying in the corner, and you could tell they had lost a child. My heart broke for them. Later that afternoon I walked out to the waiting area, and I overheard a staff member explaining where they should go for burial assistance. The mom was sitting holding her daughters baby blanket, and not saying a word, just crying. I wanted to write her a check for the burial myself, but I didn't have the money to give her. I went back into the room in tears, and Mike listened to my story, and then he cried. We felt for them, and I wanted to do something for them, but I couldn't.
I know that story is sad, but I did want to share it. We should all be grateful for our children, and hug them everyday. So Jude is out of surgery, and we pray the next few days get easier for him.
Tuesday, September 28, 2010
So one thing I haven't mentioned that I have been doing is researching the cause of Jude's stroke. In most cases of an in utero, or childhood stroke there is no explanation. Many times it isn't worth chasing an answers either, because it just brings heartache. I on the other hand truly feel like I know the cause, and I have known the cause. My gut feeling is telling me it was issues from the birth control I had been taking. I won't mention the name because I don't want to slander the name of any company. I will however say I really believe the pill form of birth control is dangerous, and the cause of many issues in America today. I lean more towards the progesterone only pills, or implants. I was only off my medication for a few days before getting pregnant. Early in my pregnancy my platelets showed to be very low. Later in the pregnancy they gave the low platelet count a name, Idiopathic thrombocytopenia. Now I am very aware that pregnancy can cause this issue, but since mine appeared with my initial blood test, I don't think that was the cause. In addition I had problems with my gallbladder, liver, kidneys, and more. I believe I had drug induced thrombocytopenia. Now there is a big debate on whether my issues, could have caused Jude's issues. Some doctors are saying yes, and some no. My thought is......if my blood supply is giving Jude oxygen, and providing his nutrition and it's compromised common sense says his could be compromised as well. There really isn't anything I can do about this, but it is interesting. I am very interested in knowing if anyone else has ever experienced a situation like this. Like I said there is little that can be done, but awareness could be created if there is indeed a link. Although, it would be very hard to prove.
I am nervous about tomorrow, and I know tomorrow I will be even more nervous.
Also, say a few prayers for my sister if you don't mind. She is having surgery on Thursday to relieve pressure from spinal fluid building up behind her eye.
Monday, September 27, 2010
We have noticed Jude really looking at us lately, and he will follow someone with his eyes as they walk by. This is a huge step because he never followed us before. I am still working with him on grabbing his rattles. He will not reach for them, but I can put them in his hand, and wrap his fingers around the handles. He will keep them in his hand for a few minutes before dropping them. Mike continued working on Jude's room this weekend, and it's almost complete. He is finishing out the walls, hanging the ceiling fan, and floating out the floor. He also decided to paint the ceiling a midnight blue, and he wants to put stars in the ceiling for Jude to look at while he sleeps. I think this is a great idea. I have to praise my cousin for the contractors she sent over. Mike said they were "really really good" which is a huge compliment because he critiques contractors hard.
Saturday, September 25, 2010
So the movie basically revolved around a little girl that had just lost her mother. The father is struggling, but is making the best of the situation. I laughed outloud when he took the TV dinner with the foil on top out of the oven, and popped them on a tin TV tray. "Oh my gosh" I exclaimed, "That was us!!". My dad did the best he could, but he was lost too. Who wouldn't be at the age of 27 losing your wife, and your childs mother? The movie was just so strange because it followed so much of my life when I was young. Down to the point that the lady across the street (she looked just like Whoopi) watched me, and I loved her. I was very upset when my dad explained to me that I was not a part of her family.
I remember wondering like the little girl on the movie did if you would forget the smell of your mother, how she looked, or how she spoke. If you are wondering, I have. I remember some things, like her beautiful hands that graced the piano keys with long nails. I remember her long blonde hair, but her face is very fuzzy. I remember sitting at the piano listening to another rendition of Beethovens Moonlight Sonata. I also remember the birds she loved so much in their brass cage, but the rest is a blur. I remember.........she was kind to me, even throughout her issues.
It's strange that it's always Emily that points out emotional songs, movies, or more. Remember it was Em that pointed out "What a Wonderful Life", when I was agonizing over continuing my pregnancy with Jude. She is wise beyond her years. So I encourage you to watch the movie I mentioned, and remember that someone that relates to that movie closely.
Jude gagged a lot today, but took in his feeding, and all his water, which is amazing. Mike is working on finishing the texture in Jude's room. Tomorrow he is going to paint the outside, stain the door, and paint the inside of the room. Mike wants is working on Jude's ceiling, and I cannot wait to see it done. He wants a "Starry night" based on Jude's campground room, and we think he will loved all the beautiful scenery. I am very grateful to all that have made this happen for Jude.
Tomorrow I have a Scentsy party in Springtown. I would normally take Jude with me, but he can aspirate on the long drive over there, so he will stay home. Em will be staying with Mike to make sure Jude is happy. Jude eats at 9, 3, and 9 so only three times a day. We pretty much plan our day around his feeding schedule, and if we have to leave him with someone it's only after, or before a feed. I know Mike is tired, and I hope that Jude is good tomorrow. It's hard to ask for help when we are in our situation, but I explained to Em I reallllly need some help tomorrow. She is going to do her best to hold Jude while Mike works on the room. She is so wonderful with him, and I know they will have a good day. I will do my work, and be home right after the party. I set up Em's CD player today next to Jude's pallet with the "Across the Universe CD", and he LOVES it! I told Em to turn it on if he gets upset tomorrow, and she said she would.
Friday, September 24, 2010
I am now feeding Jude through his tube, and he is fast asleep. I am praying he will stay asleep for the remainder of the night, and the tube will stay down.
Emily stayed the night with her friend tonight after the school districts football game. It's hard for me to let go, but I trust her...
So I came home to Jude's room looking almost complete. I am just thrilled, and I cannot wait to get his sleep safe bed, and everything in there. I found some cute bear bedding on ebay, but someone keeps outbidding me. So without delay here are the pictures I took last night. Mike is finishing the painting today.
So after my blog yesterday the teacher had emailed me back that she was going to talk to the children in question, and make sure she didn't "sound rude". Well she talked to the children, but not my child. She told the other ones that she didn't mean to sound rude, but that the point still stood she needed someone responsible to make each meeting, and Emily failed to meet three deadlines. The deadlines she is referring to is the meeting I discussed yesterday, and some paperwork. At this point I was now LIVID! I sent an email to the principal . I basically said I didn't want Emily to run because that would be giving her preferential treatment due to her situation, which I didn't want. I did however want her to STOP insinuating my child was irresponsible. That I am unsure what she doesn't understand about the fact Jude was in the hospital the week of question, and then we were struggling the few days he got back. I ended the email with
Mike just called, and said Jude has thrown up again. He is so aggravated, and who can blame him. He has cleaned Jude up, and put him back in his bed because he was throwing a huge fit. I think it was one of those moments that Mike just needed to walk off for a bit.
Here is Jude last night
I am sure you remember me talking about Emily being honored as a walk of fame honoree at Morgans Wonderland this year. Each year until 2015 they will pick people that deserve recognition for helping the disabled, and making a difference in their community. Emily was chosen for 2010, but due to Jude's illness she was unable to make the awards gala. Yesterday they sent me a picture of the gala, her award, and her lighted path stone that is in the park. We were so honored. You can see more on the disabled theme park at www.morganswonderland.com.
Thursday, September 23, 2010
I have been trying to lose weight, and get in shape, but I think my pictures are looking like all boobs again, ha! Darn surgeon! Anyway, we won't travel down that road again. The point is that I highly recommend this quaint little place. It has roll back windows in the front, so on a nice night, like last night the front of the restaurant is completely exposed. Downtown Roanoke is becoming like Deep Ellum restaurant row in Dallas, but with a hometown feel. I love it. Plus, it's affordable.
So Emily had a really bad day yesterday. It was the first day that I have ever wanted to just cuddle her up, and take the emotional pain away from preteen issues. First of all, she has been wanting to run for student council, and has been arriving early on Wednesday mornings for the meetings. Well after Jude's hospital stay we headed back home, and I am sure you remember we were all sleepless. Due to exhaustion I failed to get Emily, and her friends to a vital Student council meeting. She came to us the other night, and told us she didn't think she would be able to run for office because she missed that meeting. We gave her the opportunity to go to the teacher, and explain the situation to see if anything could be done. Emily did this, but the teacher told her that she needed "responsible" people to run student council that would make every meeting. When Emily tried to explain what happened the teacher responded that she was busy, and didn't have time to listen. Now let me point something out here, I do NOT expect Emily to get preferential treatment due to her situation. Although, I also DON'T expect my child to be told she is irresponsible, or have that insinuated. I also expect a teacher to treat my child with respect, and listen to what she has to say, or if busy, schedule a conference time for later in the day. To say the least, I was upset, but Mike was more upset. Mike actually got very choked up over the phone to me, saying Emily is the most responsible kid he knows, and it wasn't fair. So we have a meeting pending with the school, and had a wonderful chat with the principal yesterday. I don't think the teachers actions were intentional, but nevertheless, they hurt Emily.
Second issue. Anyone love Sex and the City, as much as me? Remember the episode where Carrie's boyfriend broke up with her via post it note? Emily got a text ...... A TEXT, last night from her little boyfriend that said, "we have to break up, sorry". I am going to cut the kid some slack here because he is only in sixth grade, but the fact Emily had no clue why.. really upset her. I reassured her that she is a beautiful young lady with a lot to offer. I also told her she is in sixth grade so just concentrate on schoolwork. I think her main concern for having a "boyfriend", was having a date to their dance in October. I assured her that sixth grade love turns like the tide, and she will have someone else in no time. I am sure we all remember "going with" someone which really just consisted of sitting together at lunch. Poor Em, she had a rough night!
Who could resist this face?
Wednesday, September 22, 2010
So no, this isn't the way we thought this surgery would take place, but we have faith Jude will pull through just fine. I will be grateful to get this tube out of his nose, and I hope Jude isn't in a lot of pain. Jude will be in capable hands at Dallas Medical City children's hospital. Their new facility is amazing. We will keep everyone updated s much as we can the day of the surgery. Right now they are saying they will put in the mic key if they can, but Jude may be coming home with just the tube at first. As long as we can control his pain, we can handle anything.
Sometimes I wonder how we will explain to Jude that he will be in pain, and if he will understand. I guess all we can do is console him with our voices. I hope he understands no one is doing this on purpose.
Look how big Jude has gotten!
Tuesday, September 21, 2010
After I talked to Mike regarding the pediatrician the surgeon's office called. To my surprise they explained they wanted to do the surgery next week, with the fundo. I said, "but I wasn't calling for that, I was just calling to find out information on the fundo". She explained that the doctor really feels this is necessary, and he wants to get Jude's surgery done asap. I understood what she meant. He also believes Jude is aspirating, and we need to do this surgery prior to permanent lung damage. You want my honest opinion? I think the streaks they keep seeing on the X ray of Jude's lungs is already lung damage. Although, it's not affecting his breathing or pulse ox, so it's good we caught it now.
There is a lot of controversy over the fundo, and honestly I am just human. I have listened to everyone's advice. We have spread out the feeds, and slowed them down, but it hasn't helped. Someday's Jude keeps down his food, somedays' he doesn't. Someday's it's a sneeze that triggers the vomit, somedays it's just a gag reflex from saliva. Point is, from what the nurse is saying, it's not from a full belly. Jude can smile, he can laugh, but he cannot sit, walk, talk, or use his limbs correctly. I think he will in time, but right now I can understand why they are concerned about Jude's aspiration. Jude's Schizencephaly is rare, and well......and normally kids with this issue can present with various infection (for example the CDIF). We just have to make the best possible decision we can for Jude, and we think this is the right one. The surgery is correctly set for next Wed, but we all know how that can change. We pray, and hope we are making the right decision. We just want the best for Jude.
We have been told to watch Jude carefully until then, and we will. We are staying positive, and believe Jude will come through all this with flying colors. I believe the tube will make our lives easier, and Jude's too. Again, thanks for everyone's advice, and continued thoughts, and prayers.
I also put a call into the surgeons office to talk to them about the fundo. I explained to her that Jude is still throwing up about every other day. She seemed to be more concerned about this than the actual fundo. She started asking me a lot of questions about his feeds, the throw up, and more. She said she is really worried he is aspirating on the vomit. She said she is going to talk to the surgeon, because they might have to figure something out. They don't want to put Jude under due to the prior illness, and now I wonder what they will do if he is sick again. Although, we cannot continue to go through a ritual of him getting sick because he doesn't have the g button. His assistant said she or the doctor would call me back before noon today.
So throughout our trials and tribulations as special needs parents, we are frequently reminded just what miracles our little babies are. I wanted to extend a huge congrats to my friend Gena whose little son Frankie walked on his own yesterday. If you remember, Mike had taken the pictures of Frankie with his walker below. I know Gena is just thrilled.
I also wanted to share a picture of Emily with you. She decided to be silly and take some "hippie" pictures of herself. I think they are just beautiful, and she is getting so big.
Have an amazing day everyone!
Monday, September 20, 2010
Sunday, September 19, 2010
Speaking of where I live I thought I would explain where I work. I have new readers, and I thought it might be worth explaining. When the events following Jude's situation struck Mike, and I had to make a decision regarding who would stay home. Jude couldn't go to daycare because of his severe seizure disorder. I have a long background, and extensive education in insurance, so therefore I made more money at the time. I work for Nationwide insurance the Tim Raine agency featured at the top of my blog. I hold three licenses in insurance, and almost 19 years experience. I love what I do, and I had the health insurance, so........I went to work. Of course, I would prefer to be at home with my children, but I take pride in the fact they live a nice life because of my work during the day. My boss has been very understanding of our situation, and I worked hard at my job. Mike, and my roles have been a bit reversed in modern day "eyes", but we have made it work. Mike is now in a position to where he can look for a part time job. He worked in logistics for years, and even had a freight company until 9/11 drove it under. I think getting out of the house will do Mike wonders. I also sell Scentsy on the side (hence the picture on the right), and that's why I work on the weekends sometimes. I keep hoping we will win that $250,000 lottery scratch off, but it keeps eluding me...hahaha (jk).
So I have read on several of my friends blogs how wonderful the software on the IPAD has been regarding communication with their special needs children. I really want to learn more about this. I do wish I was here more with Jude so I can work more with him in regards to therapy, and exactly what he needs. The nutrionalist, and the doctor have both recommended that Jude have the Nissen Fundo with his G button, due to the amount he throws up. I know this is such a hard procedure on his tiny body. I am wondering what other opinions are regarding this surgical treatment? I am open to any advice. We are hoping to schedule Jude's g button surgery soon, and move on. Jude is currently taking the pediasure 1.5 and it seems to be working wonders! We had to cut out the boost because it was just to much on his stomach. I now have three cases of Boost, and I will be happy to give them to anyone that needs them, just let me know.
The walls in Jude's new room are painted a rustic red color, and we plan to leave them that way. Jude responds to red, and we thought it would be great for him. I wanted to accent the room with black bears, and Alaskan type rustic items. I thought it would be very cute! I am having a hard time finding items, but I know I will find the perfect stuff. I want Jude to have a cute room :).
Saturday, September 18, 2010
So the not so great story. Tonight we made plans to go eat with some long time friends. I think Mike was excited at the prospect of getting out for a bit. We knew we couldn't ask anyone to sit Jude with the NG tube, so we planned on bringing him along. We were all getting ready, and were planning on meeting our friends about 5:30. That would be about an hour after Jude ate, so he should be fine. Well I was holding Jude still at an incline on my lap while Mike took a shower, and Jude sneezed. He sneezed once, and I thought OH NO, but Jude kept his food down. Then he sneezed again, and I caught my breath, but again he kept it down, and my shoulders relaxed. Then he had one of those wind up sneezes, that you know is NOT going to have a good outcome. Ahhhhhhhhchooooooooooo, VOMIT! Sheesh! The allergy medications aren't working well, and Jude was volcano Jude. I leapt into action, and so did Emily. Emily flew from down the stairs with a towel in hand to catch the second round of vomit as it flew out of Jude's mouth, and nose. I quickly put Jude on his side, and prayed the tube would stay down. Jude gagged for several minutes, and cried his heart out. Emily swept up the towels, and she called our friends to say I was covered in puke, and we wouldn't make it. She is so mature for her age. I took Jude in my arms, and carried him into the bathroom where Mike was showering. Mike knew instantly what had happened, and he just lowered his head, and began to cuss. "I cannot ever go *&^% anywhere", he said. I know he didn't mean it selfish, and who could blame him. So I ran a bath, undressed Jude, and we both hopped in the bathtub to clean the vomit off both of us. Mike was so upset, and my heart ached for him. It wasn't the dinner, it's what the dinner represented. He knew there would be other times we could get out, and that we are just thankful Jude is here, but it was still hard for him.
Mike escaped to his man cave, and stayed there. I quietly brought him some dinner I had made, and Emily quickly followed with a piece of cake. Emily, her cousin Faith, and her friend Addie had all made a yellow cake with chocolate frosting, and they were so proud. Emily said Mike at the cake before the dinner, so I knew ............ he would be alright :).
Friday, September 17, 2010
Hi little brother, I'm writing, or typing this letter for you to tell you how special you are to me, and all the times we have had together. So here we go, I love the way you have taught me, and so many people in two years. You have taught me patience, respect, color, and I will never forget TIME. You are so young, and making people thing this way, you rock Jude!
You have taught me patience. When you don't want to eat, and we have to feed you hours and hours on hand bottle feedings. When I set you down my arm is strawberry pink from your head rubbing all over my arm. TIME will pass, and the pink will wear off.
You have taught me respect. You are different, that's how when I look at someone, I don't think oh that person has special needs, or that person has ugly shoes. I think, hey you know that person might be really nice, I should go meet them. TIME will pass, and I will go meet them.
You also taught me color, which I don't mean like red, orange, or yellow. I mean be yourself show your true colors, and have fun doing it, you did so why can't I. I also mean do good in everything, try your best, and do it with TIME, and effort, and it will pay off.
TIME and TIME again you have taught me the most fragile things in life, respect, patience, quality, honesty, trustworthy, and I could go on, and on, but Jude just know when I read you this you may or may not understand, bit I will, and that will make all the difference.
PS. I loved when you laughed out loud for the first time. You made me laugh so hard milk came out my nose, and then mom started laughing. We where amazed, and very surprised, good job little bro!
Love ~ Emily
She received a 95 on the paper, and her teacher wrote that it was super. I am very proud of her. Let me also point out she isn't just saying this. Emily was telling me how she and her friends sit with the special needs at lunch, because "they need friends to". She has a good heart!!
When I got home from work yesterday, my head was killing me. I tried to go take a nap, but Jude's NG tube had to be changed. The nurse, and Mike were trying to restrain Jude as they put it in, and I heard him screaming in pain. It broke my heart, and I had to go rescue him. I brought him into my bed where he finally calmed down, but we had to move him so he could be fed. His feelings got very hurt that they removed him from my bed, and I went to lay with him in the living room. The poor boy was so upset from the tube that he threw up the feeding, and the new tube, so the nurse had to start all over again. It was so upsetting. I never got my nap, but that's okay. I sat and held Jude the rest of the night while he ate, and we watched a movie. He finally went fast asleep in my arms, and I put him in his crib for the night. He only woke up a few times last night, so for the most part we all got some sleep. Jude is the master at teaching patience.
Thursday, September 16, 2010
Jude was a handful the last two days for the nurse, and for us. Poor Charlotte looks drained whenever I get home. Jude is just restless, and doesn't seem to be able to get comfortable. He doesn't want to be on his wedge while he eats, so we have been having to hold him while the feed is pumping. If you put him down, he only wants to be on his tummy, and will throw a huge tantrum if you put him on his back. He is also a huge wiggle worm while you are holding him. I really think it's his darn teeth again. Last night when we gave him his medications I gave him some children's advil, and I think my suspicions are right because he calmed down, and went fast to sleep. I try to limit any pain reliever because I feel like he is getting enough medications, but he has had such a hard time with his teeth. I really attribute this to the phenobarbital he had as an infant. It really does harden their gums.
So I have everything cleaned out of my dining room, and Mike is going to start ripping up the carpet. I will start taking pictures so everyone can see the before, and after of Jude's room. I am very excited! Mike started his job search yesterday, and we are praying something good comes along. He used to run a logistics company prior to 9/11, but the tragedy that struck America caused his business to go under. UPS, and FED EX can survive something like that, but not a small logistics company. Anyway, I have faith he will find something soon. He is even looking at 4am - noon shifts so he can be around if Jude needs to go to the doctor. One of us has to be available.
Tuesday, September 14, 2010
Tonight, I sent Mike to the store, and while he was gone Emily, and I gave Jude his medications, and his normal feeding. We also ran a flush of 130 MLs of water. Jude is now soundly sleeping, and I hope he will be the rest of the night. I was so happy to give Mike a break, and I think I did everything correctly. I took the stethoscope, and listened for the "bubble" in Jude's tummy from the air I pushed down the tube from the syringe. Once I heard the "pufffff", I inserted the medication trough the medication port. From there I primed the pump, and then inserted the feed tube into it's port to put the need nutrition into Jude's body. Jude was a wiggle worm tonight, but he got the full feed in prior to bed time. We learned to leave him sitting in the same position for at least an hour prior to moving him, or he will throw up.
Emily, and I also sang several songs to Jude, and I talked to him in detail about every action I took. I even noticed that Jude followed me with his eyes from one side of the living room to the other, and that is just flat out amazing!!!! I praised Jude for his good work, and I hope to see it again.
My second story is based on an article I read in a magazine last night. It's also based on a conversation I had with a friend. She was telling me how some friends of hers wanted their young daughters life strict, and structured. So much so they just gave their daughter her first sweets on her first birthday, which of course made her sick. She had never been exposed to cupcakes, or anything like that, so it upset her stomach. Anyway, I was telling her how things just don't always go as planned, especially when you want your life that structured. I am not knocking how they choose to raise their child, just shaking my head a bit because I know first hand how those great plans for a child can change. You can plan all you want to, but then life has a way of slapping you upside the head. I started telling her about the article I read last night regarding a mom who was planning her second birth. She was a mom that didn't want any medication for the pain, a natural birth, with a doula. She had planned everything meticulously from the beautiful smell of lavender burning, to the relaxful candles, and soft music playing. She had dreamt of how she would introduce her young daughter to her newborn daughter, and how wonderful their life would be. She described in detail how painful the contractions were, but how she knew her body was just making progress towards it's ultimate goal. Then the delivery........it wasn't what she expected. She knew immediately when her daughter was born she had downs syndrome, and she was in a panic. She said she cried for hours over the loss of the daughter she wanted, and mourned for the perfect life she dreamed of. Then she finally realized that this little baby had already accepted her as her mother, and was begging for her to love her. So she did. I was touched by that story, and related to every feeling she had.
The tube is getting easier to handle, and our life is moving forward. We are learning to adapt, and are watching our little baby grow.
Monday, September 13, 2010
Yesterday we marked the opening day of football season. I made a wonderful lunch consisting of teryaki glazed Salmon, stuffed sweet peppers, and spinach with cherry tomato's drizzles in olive oil, and balsamic vinegar. I was rather proud of my healthy meal, but Mike walked in and said, "What the He$$ is this?? This isn't FOOTBALL food, are you trying to kill me?". Although, he ate it all up.
Jude got ready for the game too, but unfortunately his team spirit couldn't save the game.
This is a look at Jude's pallet we made him while he eats. He is on a large wedge, with the bobby under his tail, and pillows for him to rest on. He seems to really like it.
We have started clearing out the dining room to convert it into Jude's room. I am really excited about the fact he will have his own room near us. We also put in a call regarding a sleep safe twin bed, and they are working on getting us one. I plan to put shelving in Jude's room to store all his medical supplies. I feel like this will make the house more manageable. I am lucky we had this spare room, and for the family helping us get this done.
Saturday, September 11, 2010
Since the nurse is here today Mike, and I are going to get out for a bit. We are not used to leaving Jude alone, but I know he is in good hands. I think we need some time to decompress.
Jude has a follow up appointment on Monday to check to see how he is doing. I will be anxious to hear what the doctor says.
Friday, September 10, 2010
So Emily got asked to the dance tonight, and she is very excited. My little girl is growing up....
Tonight I feel so much better, I am hoping tomorrow is the same. I also hope Jude is feeling good tomorrow.
If I lash out at you, it doesn't mean I haven't appreciated all you have done for me, it just means you were in the right place at the wrong time (insert evil grin here... As I always say, you have to have humor).
Now, I am going to pull up my picture of Maui, and stare at it while I work.
Thursday, September 9, 2010
I wrote the above last night, but then I had to go because Jude was having issues. So I will finish this blog up today. Jude did pretty well with the throw up last night he got me, the couch, the blanket, and more before he was done, shoo! On top of that our dog was acting very sick, but I have narrowed his issues down to anxiety. I am not sure why I was so emotional last night, but I was. I was crying at everything, it was like I had the baby blues all over again. Mike would talk to me about Jude's situation, and I would cry! I would see a pampers commercial, and I would cry. It was borderline ridiculous, and I am just moody. Actually, I am just angry! Mike said that for once he is up, and I am down. He explained he sees this as a new beginning, and something to keep Jude here longer. I see all this as a ticking time bomb, but I will work past that, I always do.
So Mike is going to request a new suck swallow test after the NG tube is out. Although, he said that the nurses had assured him Jude was relaxed during this past test. I could be wrong, but I believe the constant seizure activity has caused the aspiration. I think Jude's body has forgotten how to eat correctly. I did have to tell you one thing we have noticed that shows proper brain activity. Jude has learned to reach up, and try to pull the NG tube out of his nose. He is also bringing his hands to his mouth, and sucking on his fingers. I think he misses his bottle. Judes cough is still very prominent, and he felt a bit feverish again this morning. I do believe the antibiotic is wiping out the double pneumonia, but the viral portion is lingering. Jude also keeps sneezing, but I think that's just the tube. I told Mike it's probably like having a cutip constantly rubbing your nose, which makes you want to sneeze. I want to sneeze just saying that.
So I got up TWELVE times with the little booger last night. He would twist his body around, and somehow get his face backwards on the padding of his bed. I would have to turn him around, straighten his legs, and cover him back up. We have him on the wedge, with the boppy around his butt, and his hands covered so he doesn't pull the tube. He is a wiggle worm though, and finds his way out of our make shift restraint system. Mike had stayed up after Jude's last feed listening for Jude in case he threw up. Mike finally came to bed about two am, and that is when I took over thus explaining my twelve trips to his bed. About six am Mike woke back up, and took over with Jude, and at that point the boy was wide awake in his bed. Our conversation went something like this.
Mike "He is going to kill us I think"
Mike: "It's like we are getting enough sleep so we don't go crazy, but our bodies hurt"
Mike/Me: "Little stinker!"
The nurse is not there today, so it's Mike's first day alone with everything. We should have her back tomorrow for awhile. My aunt is going over to visit Mike, and his parents are stopping by. Before I left today he said, "Babe, I promise not to call screaming at you today because I am frustrated". awwww!
Emily seems to be handling things pretty well. She has been a bit more distant from Jude, I think this all shook her up a bit. Although, last night after he threw up, and we removed the tape, she got down to Jude's level, and helped console him. Poor Emily has had hours of homework every night. Last night she was up until 11 finishing her homework for today. I don't understand why they expect kids to go to school for 8-9 hours a day, and then send them home with 2-3 hours of homework. It just makes no sense!