Recovering

Rylee is still recovering from her surgery. We are still giving her loritab several times a day as she seems like she is in pain. It seems like most of her pain is from her tonsils as she gets really upset when she coughs. She has a bronch scheduled on 6/9 to see how the reconstructed site looks and they will remove the stint that is stitched into her airway. We might have to stay the night one night to see how she handles not having the stent in place. We had a very relaxing week and weekend and I will go back to work on Tuesday. We are just taking things day by day and are continuing to stay positive that the trach will be gone soon.

Birthday weekend

I had a wonderful birthday yesterday and was so glad I didn't have to spend it in the hospital. My celebrating started Saturday with Troy making dinner and then he even got up and made me breakfast yesterday morning. I took Jordan with me yesterday afternoon and we celebrated my dad's 60th birthday. Rylee has been doing great since coming home. We are giving her loritab every 4 hours and that seems to keep her very happy. She usually sleeps a couple hours and then is awake for about an hour. She is still very cuddly which we are enjoying very much. We may try to see if she will eat some yogurt later today and see how she does with that. Sorry for the late update :)

Home

We made it home! We were discharged by 9:30 a.m. and daddy and Jordan came to rescue us out of CMH. I am still amazed that we only spent 3 nights in the hospital. If you would have told me this after Rylee's surgery I would have never believed we would be home this soon. The doctor told us a week ago that she has only sent one 5 year old kid home after 3 days with this same type of surgery and she was shocked that this boy went home soon. Our Rylee sure knows how to show the doctors how strong she really is. The girls played their first twin trick on one of the nurses today. One of the nurses didn't know that Rylee had a twin and when she came into the room Jordan was in the crib and I was on the other side of the room changing Rylee. She commented on how happy Rylee was now and then Troy and I both told her it wasn't Rylee. She seemed a bit confused and said I thought Rylee had a trach. She is the first person that has said they look alot alike and you can't really tell them apart. Rylee will go back for a bronch in about three weeks and they will remove the stent and make sure there isn't any scar tissue that needs to be removed. We should come home capping her trach for a few more weeks and then if all is well the trach will be removed. I get to enjoy my 34th birthday tomorrow celebrating my dad's 60th birthday in Burlington, Ks tomorrow.

Friday

5:55 p.m. We are scheduled to go home tomorrow if all goes well tonight. It is truly amazing that she is able to go home after only three days. We were told to expect a few days to a few weeks. I think the doctor is pretty shocked that she recovered so quickly. It is a good thing that she has a g-tube as we don't have to worry about getting food and liquids down her. She is not enjoying the hospital right now. Anytime anyone walks in she shakes her head no and then starts to throw a fit. It took four of us to hold her down a little bit ago just trying to get her IV back in place. She is now caged in her crib as she is everywhere and just wants down to play. We have gotten a lot of cuddle time in so that is nice. We are so proud of her for pulling through this as quickly as she has. She sure is a lot tougher than me.


Rylee had a pretty good night. Woke up every couple of hours but went right back to sleep. We have had all kinds of doctors in this morning to check on her. They took out her rib and neck drains. The wounds look good. The doctor said that there is a good chance that she will be going home tomorrow. They are not doing anything for her that we couldn't do at home.

I just talked to Troy and Rylee is still doing fine. We got moved to one of the regular floors this afternoon and it is a very nice room. The staff seem very nice and have been very helpful so far. Rylee spent the afternoon watching Mickey Mouse and cuddling with us. Rylee did get a little upset with him when he left the room to get some dinner tonight. He talked to her surgeon and they are thinking if all goes well she should be home by the beginning of the week. We will just take one day at a time and concentrate on getting Rylee healthy. I came home to Jordan tonight and she didn't seemed to bothered by not seeing me for a day and a half. She was into everything and kept me very busy once I got home. Troy and I have decided that we are really glad we have two babies instead of one as they entertain each other. It took me awhile to get Jordan to sleep tonight so I think she is a little out of her normal schedule. We are so thankful that Rylee is feeling much better and not in so much pain. Troy said they are going to be giving her loritab and tylenol for pain tonight so hopefully he can get some rest. Thanks for all the prayers and special thoughts for our little angel.

Day 2

Rylee made it through her first night without too many complications. Her night nurse said she did really good and no major issues.I stayed in one of the Ronald McDonald rooms in the hospital for a few hours. I came back to Rylee's room at 6:15 a.m. and no nurse came in until after 8:00 a.m. Rylee was out of control and in major pain. I finally went out and asked for some pain meds. A nurse told me she was ready for her tylenol and I talked the nurse into giving her a little more than tylenol. I was a little upset that Rylee was left alone for that long with no attention. After her morphine was administered she was so much more relaxed. All the doctors, ENT's, nurses, RT, and radiology all came in and messed with her and she was not very happy. They changed her dressings and they think everything looks well. She has a drain tube in her rib area and in her neck and those should be removed soon. She has now settled down and has even given me a smile and danced during Mickey Mouse. Daddy is holding her now and they are trying to take a nap. We should be moved to a regular floor sometime today. I was told that she was breathing room air this morning and she was satting over 98%. I thought it was a little strange and voiced my concerns that I thought she was still on oxygen. I was assured that she was not on oxygen and I finally talked her nurse into checking and sure enough they had the oxygen on and it should have been turned off. We should be discharged in four or five day so that is a lot shorter than expected. We will post an update when we get moved to a regular room.

Surgery Day

8:56 p.m. Wow! What a day for Rylee. She is not giving up that is for sure. They have tried morphine and versed and nothing seems to work more than a few minutes. I am hoping she just crashes soon and gets some much needed rest. We will hopefully get moved to a floor tomorrow and that might be better for Rylee. It is pretty noisy in the PICU and alot of action going on. I have Mickey Mouse playing over and over so hopefully that will keep her entertained this evening. When she gets to throwing a fit she gets hard as a board and starts to desat pretty bad. There is nothing we can do when she gets like this. She usually just gets too tired to keep going and crashes for a few minutes. This does bring back some memories from her NICU days. I hear an oscillator ventilator going next door and just hearing that sound brings back the horrible memories of the girls' first few weeks. I am going to go down and sleep in the Ronald McDonald room and hoping the night nurse takes good care of my baby girl. I sure am missing Jordan today. I think today is the first full day that I have ever went without seeing her. I will have Troy update in the morning as I will probably be holding Rylee most of the day. Thanks for all the prayers.

2:50 pm: Got to the PICU. We got to go to her room at 3. She is not happy! They are going to be generous with the morphine to keep down her pain levels. Having mom hold her seems to be helping too. It seems like old times with her in here all hooked up to everything. She now looks huge in these cribs compared to when she was here last.

1:40 pm: Everything went well. Rylee is in recovery. The Dr. says that she has lots of marks from the staples and attempted IVs, drain tubes on her neck and rib area. We will get to see her in about 30 minutes and go with her to the PICU.

11:50 a.m. Just met with one of the ENT doctors and they are going to go ahead and remove Rylee's tonsils as they are very large and will more than likely cause some trouble when the trach is removed. They are just now getting the graft in place and then they need to close her neck incision. It should be another hour or so before she is done wit surgery.

10:50 am: Things are going well. Probably another hour to an hour and a half. Dad kicking mom's butt in UNO.

9:39 a.m. We just got our first update and they started the surgery about 20 minutes ago and already have her rib graft removed. We should get another update in an hour and a half.


4:00 am:  Rylee wakes up ready to get this show on the road.

6:30 am:  We get to Children's Mercy for check-in.

8:00 am:  We gave Rylee to the nurses and headed to the waiting room.  Surgery will be 4-5 hours long but we will get updates every hour or so.

Countdown

From the back

Can you tell we are ready for summer. Poor Ry won't be able to swim though :(



Ry playing peek a boo.


Cousin Christian and J.

Such a big girl now.




Grandpa Bitler and J


Aunt Kayla and J


Jordan giving Maddie kisses and Maddie kissing back.








Rylee had her bronch on Friday and unfortunately she is going to have to have the double stage LTP instead of the single stage LTP. The doctor doesn't feel comfortable with only doing part of her airway so she is going to do the posterior and anterior reconstruction. What this means is that she will have some of her rib graft stitched into her airway and then a stent will be placed for 4 to 6 weeks. We will then go back for another bronch and they will remove the stent and make sure she doesn't have any scar tissue or other issues that would cause her some trouble. She will then go home with her trach for another couple months and we will begin capping her trach. This is where we will cover her trach completely with a cap and she will do all her breathing through her nose and mouth instead of her trach. This surgery is actually safer and does have some benefits to it as well. She will not have to be sedated for several days and she will not have to suffer through the withdrawal of her sedation. The doctor told us to expect a stay from a few days to a few weeks. It all depends on how Rylee recovers. Rylee had a horrible time in the recovery room and had everyone on their toes. She was very agitated and they had to call me up to her room as she quit breathing. They informed me that she turns blue very quickly! Several of the nurses and staff came by after I got into the recovery room and told me that Rylee is the strongest little girl they have ever had come through their recovery room. I guess she just about flipped off the bed and tried to pull her IV out. Nobody could get her to calm down so that is when I got to go be with her. I think she knows how to get them to let her mommy come see her! Once I got into the room with her she was much better but was still having trouble with her O2 stats. The doctor is going to make sure she is given something extra for pain and discomfort on Wednesday so we don't have any episodes like that. It was a very stressful day and we are glad that it is over and we will be at CMH on Wednesday for Rylee's reconstructive surgery. The doctor did inform us that if there are no rooms in the PICU they will have to cancel her surgery. Jordan enjoyed the day with her grandma and was very glad to see us when we got home. I took Jordan to Hoyt, Ks for my 81 year old Grandma's wedding on Saturday and we had a great time. Jordan was a lot more social than she normally is and even let several people hold her. These next few weeks are not going to be easy for Rylee and Jordan so please keep these angels in your prayers. We are going to try to get one of us home every night so that way Jordan gets to spend some time with one of us during Rylee's hospital stay. I am not comfortable with leaving Rylee in the hospital alone so I want one of us with her at all times. I am hoping they have one of the Ronald McDonald rooms in the hospital available so we can get some rest. I will post updates as often as I can. Our little Rylee is a trooper and will handle this like a champ.

Rylee walking!!