A little medical background Part 2

So everything seemed to be going good. She was gaining weight now and starting to really perk up. But now we had new worries. Like clogging up the tube with her medicine, worrying about infection, and finally of course her wanting to pull it out every chance she got. Every time you take her clothes off of her and she can get to it she messes with it. So we had to run to the ER quickly because she pulled it out of course. See when she pulls it out we have to get the the ER right away because it will close up VERY fast. So we got there and told them what had happened and they got us back there only to realize they did not have one to replace it. Of course. They had to put a temporary thing in there and we had to go to Rochester the following day. That is when we had them ship us one to have here so if it happened again we would be prepared or so we thought. So we did good for awhile. Then she had gotten really sick. She was coughing, breathing horrible (worse than her normal loud breathing), throwing up, running a fever, and sleeping all the time. She was literally laying on me then she would lift up her head try to look at me then literally pass right out. So I took her to the Dr. and they said it was viral. Then she got worse so I took her back. They sent us over for an xray to check for pneumonia and that seemed fine so after 2 more days of her just getting worse I took her back to the Dr. and then they sent us over for blood work. That all came back fine. I was so frustrated I felt like I was going crazy. I KNEW something was wrong. So I called her GI specialist and explained the whole week and they wanted me to go to the ER right away. So we went to the ER and I explained everything and they checked her over and her O2 was in the low 80s so they put her on oxygen right away. Then he looked her over and said her throat was REALLY red so he was going to check for strep even though it was really uncommon for someone that young to have strep. He was also going to check for RSV even though that Monday she had just had the shot for RSV. Well the Strep came back negative but the RSV came back positive. When he came back in to tell me he said because she couldn't keep her O2 up without oxygen she would have to be admitted. Needless to stay we ended up staying there 5 days I think. She was on oxygen a long time and she was getting breathing treatments every 2 hours and we couldn't leave until she could get off the O2 and get the breathing treatments to every 4 hours. While we were there we did get a nice surprise. We actually shared a room with another Foster family. It was like sharing a room with family. It really made the hospital stay a little less stressful. Their little one was in there for RSV as well. It was def. an interesting stay. Well on the day before we were to supposed to get discharged they took her down for yet another xray of many and this on showed pneumonia. We really thought she was safe from getting it seeings how she was starting to get better but we were wrong but it wasn't that bad. They gave her some antibiotics for it. So once she could keep her O2 up without any oxygen for 24 hrs. and breathing treatments every 4 hours the Dr. and us decided that she would be safer at home. She still suffered for a long time because of this illness. She continued to cough and throw up for the next month. It was so bad we literally had to keep those basin things from the hospital that looks like kidney beans around our whole house (we call them her beans). We also had to take them with us everywhere we went. She also had a couple episodes where she looked like she was having seizures. Well we went to her GI Dr. and I explained everything and they seemed concerned and wanted to do a couple tests but wouldn't be able to get them done for 2 weeks and I told her that I just couldn't wait that long. I couldn't let her throw up and choke on it for 2 more weeks. She said that if they had one come up sooner they would call us. Well that was not good enough for me so I called my hubby and he told me not to leave without them doing SOMETHING. So I took her to their ER and to make a long story short they admitted her. While we were there they did a couple tests and we saw the ENT spec. and the Neurologist and of course GI. The one test was an emptying test and that showed what we already knew and that was that she has really bad GERD but the good news was that she was not aspirating when it came back up. Then they did an EEG to check on the seizures and that came back normal. Praise God. The ENT spec. checked her over and they were not sure but they think she has post nasal drip but they thought her ear prob. was due to GI problems and the GI spec. thought it was her ears so we were sorta caught between 2 specialists, that's always nice. Anyways after they found the EEG to be normal they finally told us she has Sandifor Syndrome and that looks just like seizures. It is basically the way her body reacts to the pain from the GERD. So they sent us home with a new medicine regimen and they said if we get her GERD under control then the episodes that look like seizures would go away as well. Of course we still didn't have an answer to the tons and tons of mucus and all the throwing up but atleast we knew she was OK. So we went home and all was going well. We have been trying to feed her by mouth and she seems to like carrots and butternut squash and sweet potatoes but she does not crave it because first of all she really isn't hungry but we try to feed her every time we eat just so she will get used to when we all sit down to eat that is what we do and we want her to be involved as well. She does like to sit with us when we eat. Every time we all get up to the table if we don't get her right up there she will start crying till we put her up there with us. Most of the time she just hangs out but as long as she is involved. A couple months later it happened again.......you guessed it she pulled her tube out....grrrrr.....I just got her out of the bathtub and I reached over to grab her clothes and I hear this noise and I knew right away what it was. So Aries and I hurry up and get around because we have to get there so quickly and the 3 of us head to the ER. We get there and I tell the receptionist what happened and they told me when this happened to let them know we need to be seen right away because it will close up so fast. So she sent us right over to the nurse. We go right over to her and I told her last time we were here they told us if it happened again we needed to tell you guys what happened and we needed to be seen right away because of what it was. Well to my surprise she looks me right in the eye and says there is one person ahead of you so if you will have a seat I will get to you right after him and she said it with a little bit of an attitude and I was not trying to sound like I was telling her what to do or that I thought I knew everything I was just telling her what they told me to do if this happened. So I said to her "I don't think you understand what I am telling you if we are not seen quickly my baby's hole in her belly could close up" and she actually said to me again there is 1 person ahead of you if you will have a seat I will get to you as soon as I am done with him. I was so upset. So I bit my tongue and took my children and had a seat and did what any furious mother that is about to lose her testimony........I prayed.....God had gotten us through so much this past year with out baby I am so thankful that back in 2004 I put all my trust in Him and got saved and it was the best decision of my life because I know no matter how things are going God knows what He is doing and I can trust Him. So I waited 10 mins and looked back where the nurse is supposed to be and she was gone!!!! I could feel my face getting red. Then she came back in and called us over. She got all her info then sent us to her room. When we got back there we had a sweetheart of a nurse and our baby really liked her. Well the Dr. came in and took a look and I gave him that g-tube that I had them send to me so we would be prepared. (I mentioned that earlier) So he got it all set up and layed our baby down and tried to place the tube in her belly and guess what............you guessed it, it wouldn't go in. I instantly knew we had waited to long. So he had another Dr. come in and try it, Nope he couldn't get it in either. So now I am really upset because not only am I worried about them getting it in but my baby is in pain from them trying so my heart is just breaking. So they inform me that they will have to call an intervention radiologist and we would have to go to the xray room to get it done. Well I had Aries with me as well and with all of this excitement he couldn't sit still. He was so concerned about the baby because he knew that they were hurting his precious and he wanted to see what was going on but I had to keep him out of the way and with us having to go to an xray room to do it again I knew he wouldn't be able to go in and I didn't want the baby to go in and me not go in with her. So i called a couple people and the first 2 wouldn't be able to get there right away and I needed someone now so I called another friend and she came right over and I couldn't thank her enough and she couldn't have come at a better time because as soon as she was walking out they came to get us. So we went to the room and he tried the tube that I brought again and he couldn't get it to go in either and by this time my baby was hurting so much she was shaking. I was furious. So I asked the Dr. "So what am I to say next time we come so we don't have to wait so our baby doesn't have to go through this unnecessary pain next time and he said well only the outside hole closes not the whole thing so if we had to we could always get it back in we would just have to put her under and I said well no that is not OK because it is to risky to JUST PUT HER UNDER. So basically he was sticking up for the nurse so I just bit my tongue again. Well because of how much it had already closed they had to put a smaller g-tube in and all the unnecessary pain as well. So after we got all that over with I called her GI Dr. and told them what had happened and they said it was OK to keep the smaller one if we were OK with it and I said it was fine as long as it was OK with them. Then I asked them about upping her amount of formula an hour so we could work on getting her off her feeding machine more hours a day and we decided to go up to 45cc's an hour so she could be off of her machine 6 hours a day. To try to get her more hungry so we can get her to maybe eat orally more. Well we got up to the 45 and she seemed to be eating a little more here and there. Well now we were looking forward to her 1st birthday it was such an exciting event. We were also told that we get to finalize the adoption on the 5th of May you want to talk about an emotional week. So we had her birthday and it was so great to just celebrate a whole year of her life. The best part of it was when I looked at her in her highchair and she had ice cream and frosting all over her face I just cried. A couple months ago I would have never thought that she would be able to eat ice cream or frosting on her first birthday or any other day as far as we thought. So we had a WONDERFUL day and then May 5th came and that was so amazingly wonderful she was ours all ours. Then May 9th was Mothers Day and that was my first Official Mothers day and that was overwhelming as well. Well We went to her Primary Dr. for her 1 yr appointment and her Dr. was so surprised at how well she looked she hardly recognized her. We talked about all the normal stuff then i told her I wanted to get her trigger thumb taken care of and last time we had went to the Ortho here and I just wasn't comfortable with that and I wanted to get referred up to Rochester for it and she said she was thinking the same exact thing so they set up and Appt. for her for June 2nd. Well we were at the Dr.s on Friday then on Monday she started to get her normal runny nose and of course along with the runny nose comes the coughing then the throwing up. This seems to be how her body reacts when she is not feeling well and it can get a little crazy. Because every time she coughs you have to be right there and have the bean ready because she will probably throw up. So all night when ever she starts coughing I have to get up and sit her up so if she does throw up not only so it doesn't make a mess of her and her bed but so she doesn't choke as well. So at the beginning of this episode the first night I was up just about all night. We had our follow up appt. with her GI Dr. and they are happy with her progress but we want to push her some more. So we are changing her formula so she will get more calories in her formula an hour so she will be able to be off her machine for 9 hrs a day. Then we talked about getting her an appt. for another swallow study to see if and how much she is still aspirating because we don't want to push her too much to eat if it is still going in her lungs. Then we talked about all the throwing up and she was thinking that maybe it is environmental allergies and gave her some allergy medicine to see if that helps if that does not help then we will go from there. We go back to them in 3 months. So our next thing to do is go to the Orthopedics Specialist about her thumb but that is basically her medical background. I am sure I missed some but you get the point. The funny thing is even though our baby has gone through so much she is absolutely the best baby. We couldn't be happier. Oh I also forgot to mention that she is now getting Occupational Therapy, Speech Therapy, and Physical Therapy because she is delayed a bit because of all she has gone through. She is now sitting up on her own and schooching a bit too. There are still a couple concerns like the way she still rakes her hands and cups them as well. Her speech therapist is also a little concerned about the way she flaps her arms but she is really starting to make some really good progress. Well that is basically it and we just love our baby girl so much and if there is anyone that reads this and is going through the same thing or has any questions I am more than willing to help out any way I can because I can tell you one thing she sure has taught us a ton this past year.