Thursday, May 28, 2009
Puking continues and since I started this post last night, today I'm feeling freshly discouraged. I should not complain, there are so many "worse" things that could be happening, but my goodness, she does need nutrition to be able to heal and grow and get healthy. I cannot understand why we are having this never ending pukefest. Is this a part of chromosome problems and why does it happen in waves??? I'm so burdened. A day has not gone by since mid march that she has not puked at every bolus feeding. I want to cry, I want to be upset, I want to lash out.....ITS NOT FAIR FOR HER. Hasn't she been through enough. She's GOT to be tired and I know I am. I'm not talking spit up here, I'm talking full on vomit til its gone.
On a slightly less depressing note....she is having so much fun today throwing new bags of socks all around the living room. What a nut.
Tuesday, May 26, 2009
Interesting enough, got a letter in the mail today from Riley surgery notifying me that her surgeon would be out of town the week following her surgery and if that concerned us we should call their office to reschedule....are you kidding me??? I took this opportunity to call and tell them we were no longer in need of their service.
She is completely obsessed with going outside. She thinks she should be out there if anyone is out there. Let me tell you how much that annoys the girls. They have a little tolerance for messing with her outside, but it quickly runs into "their" time. I took little missy for a walk today and we went to see the goats, but they were not in the field. (friendliest bunch of goats you've ever seen)
Another new experience today, Lillian pulled the Wizard of Oz DVD out of a box and kept shaking it at me and pointing to the TV. I put it in, quite shocked bc she is really not too much a tv watcher. She did get interested in it, as much as a two year old is anyway. Then tonight, she did it to me again...I said are you serious??? She shook her head yes at me very slowly several times as if to say, did I stutter??? It was funny.
I spoke to a friend who is a speech path today and she told me that most kids have to have multiple surgeries on the palate....UGH.....that was depressing information. Sometimes I wish they would just tell us these things up front so I'm aware of it. So it doesn't feel like a bomb landing on me. I have felt like that many times with her. For instance, the time she had blood come out of her trach...I was buggin'. When I called they were like so nonchalant, oh yeah, that's normal. Don't you think you might ought to tell a parent, that someday blood may come out of her trach...it's not a big deal, it's expected...do they tell you that in training....NOOOOOOO.
I feel heavy hearted today. One day at a time...
Saturday, May 23, 2009
It has become evident that pain medicine only holds her through the night for about four hours. Every night she wakens just before three crying and usually bleeding and it takes me a good hour to get her back to sleep. Her feedings are going HORR-IBLE. Yesterday, I just went straight to pedialyte. Today, we are trying to cut down her volume and slowly slowly slowly work back up. The smell coming from her is atrocious, Matt says it's my bionic nose.....but the kids smell it too. Oh, well, vomit + blood + mouth bacteria= nasty nasty smell. What should I expect. Holla back if you have ANY experience in this avenue. Any long lasting crying/coughing/vomiting causes bleeding. We assume this is from the existing hole. I was going to show the drawings on here, but I can't seem to find what I did with them.
So, the hospital experience....I couldn't really give you any specifics of comparisons, except they validate parking...lol. The nurses we had experience with were extremely kind. There were difference with treatments and such and I think they are a little farther along on computerized charting. They had alot more going on in the evening hours for kids and you NEVER see that at Riley. We had a child life specialist come see her in the evening hours. And, have I mentioned that I enjoyed not talking to this student and that student and so on and so on. When I told them what formula Lillian was on, they didn't blink an eye....(Riley had some trouble with that and they are the ones who ordered it for her) They had her meds, oral nexium (which I was told is not available at Riley) The only bad thing I can really come up with, is they weren't very quick to call lights. I mean they answered right away, but sometimes it would take some time for the nurse to come. That will be on my survey as the only negative. I'm not sure, but I think all their rooms are private. WITH Bathrooms! It will be interesting to see how things evolve as we explore this new environment. ANY time a lead came off or a monitor alarmed they called into the room. This was nice but did become annoying at times. Though I don't know that it's altogether a negative experience. Parents are also able to purchase meal tickets in the gift shop and are able to get items off the "munch mobile" when it comes to the floors. They were also ready/willing and able when I wanted someone to sit with her a minute to get some lunch. (she's an onery girl taking out her IV and pulling off her splints, a bad thing when you want nothing in her mouth) Bottom line, I'm happy and feeling more confident each day in our decision.
Thursday, May 21, 2009
To give a brief synopsis, I did like the hospital, I felt the doctor was extremely caring. I liked not having to deal with 10 different residents/students before we actually got down to brass tacs. Don't get me wrong, it was different...a lot different from a nursing care standpoint....but I'm very comfortable moving her care there. She was in a private room in a quite quad and all the nurses were very caring. I feel we are and have made the right decisions. Now, the road to decannulation begins!!!
Wednesday, May 20, 2009
The nurse came in the morning and removed her dressing, which wasn't terribly pleasant, but not as bad as I thought it would be. She has some bleeding afterward but not too much. They wanted us to stay for the day to make sure no more started. The doctor was so concerned, he came back and made a special visit to see her today bc he said he just couldn't get her off his mind. His nurse also called every two hours to check on her.
She, of course, charmed EVERYONE today.
There is more to tell, but I've literally only been home about half an hour. I'll post more later and also share our versed video and a drawing for some understanding of the hole in her mouth.
Today was my Grandma's funeral that I was not able to attend and I just need some time to process and grieve, but I think that is on the backburner for the time. Thank you for all your comments and ecspecially your prayers!!!
Tuesday, May 19, 2009
PTL this surgery is done, but oh, my poor baby is miserable.
I will tell you, I did allow them to give her versed to calm her before taking her back and friends, that was darn right hilarious. She was definitely trippin'. I will have a video to come....
We wound up having to be here even earlier than we expected so I got a grand total of two and half hours sleep. It is a little scary to be here since they aren't familiar with her, but so far I think she is in capable hands.
I feel it will be a long night. Thank you for your continued prayers and support.
Monday, May 18, 2009
Saturday, May 16, 2009
The KY trip was fine. We actually spent more time driving there and back than the actual appt. They basically asked history and were very concerned with getting her last cardiology report. Everyone there was uber-friendly, my sister thinks it was just good old southern hospitality. Maybe...or maybe they just care. The surgery waiting room was PACKED. I could not believe it and I SO did not want to have to sit in there with Lil, but I didn't have a choice. They said it was unusually busy for them that day. I doubt there will be that many on surgery day, let's call it P-day just for fun. Get it? On P-day we have to be there at 0630, translates to leaving our house at o'dark hundred. Believe it or not, I think we actually have everything lined up for the girls. Have I mentioned I have super good friends? I just need to get a lasagna made for supper that night. I will be spending the night there with her and they are going to try to pull and ENT into the surgery to take a look at those ear tubes. Fingers crossed. 3 Days. 3 short days. This most pleasant visit also makes me feel really good about transferring her care. I need to do some research into getting that going as well.
Our move is officially official. We are in need of some financial blessings in that respect as well, so if you could remember that in your prayers I'd really appreciate it.
Thank you for you prayers and comments, it really means a lot to me.
Thursday, May 14, 2009
Shorty after she returned from the sleep study, she began to show signs of distress, by seven or eight oclock she was back on a vent and still teetering. Matt and I stayed with her until a relatively good blood gas came back. It was the first night I went home. Although they procured a room for me, I just could not bear the thought of staying alone. Coming home, how painful. The first time to step into her room that my sister and kids lovingly prepared. The emotion of wondering if Lillian would ever even get to enjoy her sweet little bassinet and all her precious clothes neatly folded in her drawer or wear the diapers that lay stacked in the diaper stacker. It was just overwhelmingly difficult. We headed back up to Riley the next day only to be met at the bedside by the doctors telling us we needed to "sit down and talk". Enter, the little room. I so clearly remember the team-head doc, nurse practitioner, social worker, Lillian's nurse and maybe two other people. It is true what they say about hearing a pin drop. Everyone sat quietly as the doctor unloaded the situation. It was like air raid sirens. Like the bombs dropping one at a time. Initially I tried to write things down, but soon was just too overcome. I kept looking from the doctor to Matt. I remember there were few words afterwards...like "what can we do to help you" and "do you have any questions" and then they all filed out so quickly it was almost like a cartoon. We were alone and I think it was a moment before I realized Matt was crying with his head in his hands. We took turns like that for some time. Trying to fathom how we would talk to the kids and just soaking in everything we had heard, heart surgery, tracheostomy, mortality rate....chromosome problems. I'm not sure how long we were in the little room. I guess it was a while. The next thing I know the nurse was back saying our pastor was there and as he entered we were freshly overcome. It was the man who had helped save our marriage and been there for us and continues to be there for us today, although we attend a different church. I think we told him what we knew and the first thing he did was open his Bible to Psalms 139 and he read to us. He prayed with us and comforted us in the little room. It was after he left that we were able to pull ourselves together to face what would come. A lot of things happened in the little room and I don't think I'll ever forget the little room.
Five more days and hopefully a lifetime of no more of the little room.PS- puking continues, but some better.
Tuesday, May 12, 2009
Monday, May 11, 2009
Palate repair means so much. I know it isn't a "major" thing such as heart surgery or brain surgery or something of that magnitude, but it doesn't help me to not be afraid. I do believe I've had quite enough of surgeries. I'm concerned that there are issues that will need further attention. Not to mention I've taken this crazy leap out of my comfort zone from the hospital I'm so familiar with into a place I've never even been before. I'm worried and I pray. Casting my cares upon my Lord. I guess I must not really give it to him or these feelings wouldn't remain.
I guess, though, that I'm probably "normal" (notice I put that word in quotes, as it is objectional) in my feelings as noone should ever have a comfort level with placing their child in the position of letting there child's breathing be controlled by a machine. That with surgery there are always inherent risks.
8 days and the wind of change begins.
Saturday, May 9, 2009
Thursday, May 7, 2009
Wednesday, May 6, 2009
Another peep who didn't make the last photo
Sunday, May 3, 2009
Dear Lord, please place your all encompassing hands on Lillian's little body. Give her strength and good health to be able to endure her coming surgery. I know You and You alone can grant all these things I ask. Your faithful servant.....
Saturday, May 2, 2009
She is in a great mood and doesn't seem like she feels bad at all. We have had to throw in a few duo-nebs and have started giving her ear drops again, (although i don't know how much good they do) So frustrating. She had done so well before this last hospitalization. I will say, however, that she is not throwing up at all with her night drip. It's just so darn hard.