Reflection

Wow! Going back a year later and reading this blog is hard. I have shed many a tear tonight. I am so thankful for those of you who kept up with our family through this difficult time. I write to you tonight to tell you of both good and challenging news.

First the challenging: Kalyn will undergo surgery on September 20th to repair her left (and possibly right) hip. This surgery will completely reconstruct her hip as it pops in and out of socket with each time that she bears weight. I pray that this recovery goes better than last years. She will be in patient for a planned week post-op and when then come home to a hospital bed in the den. She will have to be lying flat for 3 weeks after surgery before she is allowed to sit up. Then she will not be allowed to bear weight on the hips for 3 more weeks. At this 6 week mark she will go back into the hospital to the rehab floor for a few weeks. While this sounds awful, and it will be a challenge, it will make walking easier and less painful for Kalyn than it has ever been. We will get through this as a family again. I will use this blog to keep our friends and family updated to her progress as it was such a success last time. (And I have already had requests to do it again!)

Now onto the good stuff. When Kalyn was in PICU last year and intubated she watched a lot of TV. And the commercials on Disney Channel (her favorite channel) were often of Disney World. She continually watched the ads and then told me with her little slight whisper and sign language that she wanted to hug Mickey Mouse like the girl in the commercial. It brought tears to my eyes and I promised her that I would get her to Disney to hug Mickey Mouse if she would just work hard to get better and come home. Well, she kept up with her end of the bargain and now I am keeping up with mine....we leave for 7 days at Disney World in just eleven more days!!!! I can't wait to enjoy this special first visit with my kids. It is my first as well. We earned this...look out Disney...here comes the Adams family!

Good Times

Wow! It sure has been a while since I lasted posted an update. The last few weeks seem to have just flown by. Shortly after my last post we had another breakdown with the staff at the hospital which resulted in a meeting with the patient advocate again. Then a meeting the next day with a conference room full of people. Couple of doctors, couple of department directors, couple of educators, couple of social workers, couple of discharge planners, a patient advocate, myself and Jeff via speakerphone. This meeting managed to bring everyone on board for a plan to complete our education over a 4 day period and to move Kalyn to the rehab floor upon that completion. Then it managed to allow me to vent to this conference room full of people about the frustrations that we experienced during our stay. At the end of the meeting everyone understood our frustrations and was working to prevent any further issues.

Then the next day I came in to find that Kalyn was left in bed until 1130 when her schedule specifies that she is to get up at 8 am. She was also lying flat on her back when I had specifically called to inform the night nurse that she had to lay on her side while sleeping or she would require a larger amount of oxygen. Needless to say, she required 50% oxygen during that time-which is not compatible with rehab floor or discharge. I had an absolute meltdown and let the director of that floor know my concerns. She then handpicked our nurses for the remainder of the weekend. Now, this is where the story gets interesting. That night, Jeff stayed at the hospital to do his overnight observation to show that he could care for Kalyn. The next morning at 8:15 my mother got to the hospital. She went into the room and saw that Jeff and Kalyn were still asleep (on a Saturday). She then stepped out and said "I thought they would be up by now. But I will let them sleep and go downstairs to have some breakfast. I'll be back in a few minutes." Now, while we did not have the same nurse who left Kalyn in bed so late the day before she was in the nurses station when this was said. This nurse then looked at my mother in a curt tone and said "Yeah, let mom yell at DAD this time." I almost hit the roof when my mother told me about this. Thankfully, she waited until after shift change when she had left and I never saw this little girl again. I did, however, call her boss at home and have a talk with her. I hope that this was addressed and does not happen again. (as a side note-Jeff kept her on her side all night and she didn't require any oxygen)

Then the winds of change and progress began to blow through our lives. We went to the rehab floor that Monday, July 12. And life has been wine and roses. Kalyn has flourished in rehab. She is walking hundreds of feet with a walker. She is speaking more clearly with less stuttering than ever. She has passed her repeat swallowing study and is eating solid foods again. She is not using any oxygen. She is even riding an adaptive tricycle. My child has never been able to ride a bike in her entire life. She can both pedal and steer this bike by herself. Guess who is working extra shifts to make the $1600 to buy her one for at home? This mom!!! I am so proud of her and all of her hard work. The staff of the rehab floor has been a gift from God. Kalyn is so happy there. I am back at work and doing well. And the best news of all is that we now have expected dates for the removal of the halo(Aug. 1st) and discharge(Aug. 5th)!!! We are coming home. And life couldn't be sweeter.

Rollercoaster Ride

Up and down and up and down again. Will this ride ever level out? Today Kalyn was placed back on a clear liquid diet so that they could prevent her from getting food into her lungs-which it appears may have been an issue by the scrambled eggs that she coughed out of her trach this morning. And she is continuing to require a large amount of oxygen at night when she is sleeping. So large that she would not be able to come home with that need. But she does not require oxygen while she is awake at all.

And the issues with communication continue. We were told that we would start doing daily trach changes for educational purposes on Thursday. Then we were told that the trach changes were weekly and that the ENT MD has to do the first two. Then we were told that our ENTIRE educational record was BLANK-as in no person in the PICU bothered to chart any of the items that we had taken the initiative to learn. So we got to start all over at the beginning. Thanks a lot! Then we learned that we could begin doing the daily trach changes-so we observed on Saturday and then did it ourselves on Sunday. Then apparently per the respiratory therapist this was too frequently and should only be done twice per week. However, the pulmonary MD informed us that we were allowed to do our second change today. If you are having a hard time following all of the different stories here then---welcome to my world. I have seen that there is a great deal of breakdown in the lines of communication at this hospital. The right hand clearly has no idea of what the left hand is doing. Not only that we have had some very poor nursing care. But at the same time we have had some great nurses. It has been a real hit or miss journey.

This whole up and down with the quality of care has made it very difficult for us to keep everything in order at home. It is hard to go home and try to take care of everything that needs to be taken care of at home when you aren't confident in the care that is being provided.

I hope that things will turn around soon. I think that the rehabilitation floor will be good. Even though it is difficult to accept that she needs to stay for rehab when I want to take her home so bad. I want her hear with me so much that it hurts. I go up the stairs and the first thing that I see is her bedroom. And it is so empty. It is a constant reminder that things are not whole here. I want my family to be complete again. And I want to move on. I feel like I have been patient but my patience is beginning to run thin. I want to go up the stairs at night and turn off TWO TVs and kiss TWO sleeping angels on their foreheads while they sleep. My heart is only half full in this house. Everything is empty and I am eager to fill it back up again.

Moving on Up

YAY!!!! We are going to the 8th floor today. Just found out this morning and I wanted to make a quick post so that everyone would know. No more PICU for us. Kalyn is doing wonderful. She is talking up a storm-even without the speaking valve. Her oxygen levels are improved and she is no longer on oxygen during the daytime. She still has a slight need for oxygen during the night-which has happened in the past when she has had respiratory illnesses. I am so happy right now that I cannot even form my thoughts into a coherent blog entry. So I will keep this short and sweet and sum it up with a YAY...just as it began-for that is the only word that I hear in my head and my heart at this time...YAY!!!!!!

Spaghetti Time

Look ma-no tubes. (in her nose that is) Today was a wonderful day for us. Feeding tube was removed and Kalyn began to eat. It took her a little while to get back into the whole eating thing but once the spaghetti arrived she was ready. She had three servings for dinner and two more for snack tonight. Boy was she happy. We taught her the signs for eat and drink today and she was using them constantly to inform me that I was not feeding her fast enough!

She has a great weekend with Tess-her favorite nurse. We were up in the wheelchair for almost 3 hours today. And best of all- the buddy brigade came through and Kalyn got to visit with Zoe- a 10 year old lovable sheltie. These constant canine visits only serve as a reminder to Kalyn that mommy promised her that we would get a dog if she would just get better and come home. I can't wait to fulfill this promise to her.

On a more interesting note we had a visitor this weekend that was a little unexpected. His name is Joey and apparently he is a frequent visitor of Kalyn's. She tells us that Joey is a "big boy" but not a man and is a ghost who stays on the ceiling in her room often. She stayed awake for the entire night on Friday because she was playing with him and listening to him. She says that he is nice and gives her kisses. She also tells us that he plays with her hair. We have noticed that she keeps on putting her hand on her head for weeks now. I thought that she was hallucinating because of the pain medicine when she first started telling me about Joey. Then one of the nurses that I love who has worked on the unit for over 20 years told me that multiple children have told them about ghost in this particular room. They always say that the ghosts are nice and that they tell them that everything is going to be all right and that they will be okay. FREAKY!! But at the same time comforting. Apparently these "ghosts" have a habit of talking a lot at night and interrupting the children's sleep. The nurse even went so far as to tell me about a night that she was working and saw a shadow at that bedside and went in thinking it was another nurse and found no one there. But Kalyn seems comforted by this presence and that makes me comfortable. We have however "talked" to Joey and asked that he allow Kalyn to sleep at night and only play during the day. And now Kalyn is sleeping better at night.

Keep us in your prayers. We appreciate every single kind word or prayer sent our way. They have helped us get through this trying time and will also aid us in keeping our eyes on the goal- a happy healthy Kalyn.

Forward March

Yes sir, that's my baby. Look at that million watt smile. This is one hour after the tracheotomy surgery. Clearly she is happy to have the tube out of her nose. (Even though the feeding tube is still in place.) Halo and vest are back on-for six weeks. Kalyn is still on the ventilator for the time being but will begin to be weaned tomorrow. I am thinking that she will start getting up more and more over the weekend. We have to get her moving so that we can get her home. She seems to be moving in the right direction.

Hopefully this weekend she will be able to start having some fluids to drink and gradually progress her diet. She is absolutely ecstatic about that. She has been asking for a drink for the past 4 days. Actually she has been begging for a drink. It was very difficult to say no when she was so dry. I feel like the ICU doctor is listening to us now that we have the plan of care written on a giant post it note on the door. And as ever, we are confident with Dr. Birknes. I think Kalyn is even happy with him right now because she has the collar off! I am actually beginning to wonder if she would prefer the vest for the entire 12 weeks of rehab instead of the collar for the second half of this time.

Discharge planners are in the process of applying for a waiver for Kalyn for Medicaid because of her advanced technological needs that are not covered by our insurance. Apparently the trach supplies run about $1000 a month and our insurance covers only that amount once per year. CRAZY!!! We cannot be discharged no matter how well she is doing until this is in place so that she will have the supplies that she needs at home. And boy are they a lot of supplies. Thank goodness she has that large bedroom. Jeff is thankful as well for the size of her room because he intends on sleeping in there when she comes home out of concern--guess we will just have to put an air mattress in the corner for him. I don't question him about being overly protective--not when it comes to Daddy's Girl!!! But she has definitely went back to her roots as a Mama's Girl during this whole hospitalization. (And I am loving every minute of it)

In the past I have shared positive experiences on this blog as well as facebook-only to have the tide of her recovery change drastically the very next day. I have actually been afraid to share the good for fear that it would jinx her progress. But I am through with that. I was scared to death that she would need the trach. It was one of the most stressful things that I have ever had to deal with. But I was focused on a negative stigma that has long accompanied tracheostomies in general. And it was all for naught. This is nothing. It may change our day to day lives for a while. It may make things take a little longer. It may even require a little more planning before we do things. But all of this has been true for a lot of different things with Kalyn. And every time we have held our heads high and pushed through with smiles on our faces. And this will be no different!

Moving in the Right Direction

Better day for my baby girl today. She slept really well last night. We have encountered a few bumps in the road with the ICU doctors-but are hoping to continue to improve their communication with us through a daily plan that is written on a large post it note on the door. This is an idea put forth by the ICU social worker to keep us informed as to what is being medically done for Kalyn. We are excited because this will offer us an opportunity to hold persons accountable for not sticking to the plan without discussing it with us as her parents. I have felt that I have had to force my suggestions on these doctors way too much-especially considering that all of my concerns have been valid and resulted in treatment that is needed.

I insisted last night that they run labs on Kalyn and weigh her. She has been in the ICU for 22 days and has not been reweighed since 3 days prior to admission- even though she has not been allowed to eat for 16 days. She has been receiving all of her nutrition through a tube in her nose. How do we know that she is getting all that she needs? Apparently she wasn't. She has lost about 5 pounds. Add this to the 3-4 pounds that she lost just prior to admission from her stomach bug and you have a very significant weight loss. SURPRISE!!! Mom was right-she is losing too much weight. Magically this afternoon her feeding was increased and extra protein has been added.

I also requested labs to check her blood counts and electrolytes. We were told in a conference yesterday by the ICU attending herself that Kalyn's electrolytes are being checked daily. I then asked the nurse when they were last checked and was told that it was on the 16th!!! In whose book is that daily. Not only that but her potassium was 3.5 on the 16th-this is the lowest of the "normal" range. This would not be an issue except for the fact that they started her on Lasix last week to help her rid her body of fluid that she had been retaining from lying down so much. For those of you who don't know-Lasix is potassium depleting!!! This means you should be checking that level more frequently than WEEKLY. Especially if you are telling the parents that it is being checked daily. DUH!!! Our level of trust with this doctor has been completely destroyed. She will now do more than answer our questions. She will prove that the answers she is providing are accurate and not just off of the top of her head. She is responsible for my child's well being while she is in the ICU-if she didn't know what labs were being done then just say "I don't know". That would have been much better than lying. Or at least come in and say that you were mistaken about when the labs were being done-don't just add one for the next day and not address this with us. Well her potassium was 3.1- which isn't dangerously low but combined with some other levels should be addressed. So now Kalyn is getting potassium twice daily through her feeding tube.

None of these things is dangerous emergently in themselves. However, all of them combined with previous oversights show a general lack of attention to detail with Kalyn's care. I pray that this does not happen to other patient whose families may not know what to question. I also pray that after Kalyn receives her trach (this Friday) that we will progress quickly and be able to go to another floor. I look forward to Dr. Birknes working on her spine after her lungs are straight. I have much more confidence in him-along with a very high level of trust-than I do in this current ICU attending. The good news is that we get a new ICU attending each week-so we only have 2 more days with this one.

Now that I have complained I have to praise. We have had some pretty phenomenal nurses in the ICU. Karen, Jackie, Amanda,Blanca, Agina, Natalie, and Michelle were wonderful. We are thankful for their skill and caring. Today Kalyn was up in the wheelchair and fingerpainting!! She was so excited to be up-but could barely keep her eyes open after that 90 minute workout. But I'm sure that Dr. Birknes will be happy as he has told us all along that mobility will be the key to recovery-and I trust him and his words completely.