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.

Wavering Resolve

One week goes so slow when you are waiting for things to improve. It feels like forever since I last posted to this blog-yet it was only seven days. Seven painfully long days. For seven days I have watched my daughter give it her all only to be knocked down again by her poor little ailing body. And I ask myself everyday-how much can this brave little girl take before it is enough? You would be amazed at what she can take. But last night it was more than she could take.

Apparently Kalyn has what is called ICU psychosis. She sundowns and becomes literally psychotic. She went 43 hours without sleep and then could not take anymore. She was angry and violent. She kept those sweet little hands balled into fists and shook one in my face when I asked her if she knew who I was. She would occasionally cry and say "I'm sick." She knew something wasn't right but couldn't control it. Yet she managed to stay awake through numerous medications. I woke up at 1:30 in the morning to the alarms from the ventilator and Kalyn trying to pull out her breathing tube. It was heartbreaking to watch. Finally she was calmed with Ativan and went to sleep for about 7 hours. When she awoke she was back to normal.

Today, they tried to extubate her unsuccessfully. She was working way too hard from the minute the tube came out. I think I knew this morning that it wasn't going to be successful. And I had accepted it. The ENTs came and reintubated her and let us know that they do not intubate more than 3 times and this was her third. The informed us that we will be hearing from them in the next few days to schedule Kalyn for a tracheostomy later this week. My heart sank. I didn't know that my heart was still able to hurt so much since it has been completely ripped out of my chest in the past few weeks.

I remember when Kalyn was born and they told us that she had Down Syndrome. I remember the geneticists telling us that we were the healthiest family as far as acceptance of this diagnosis. And all the time I was just happy that my child was alive. I didn't care that her life would be less than perfect because to me she was as perfect as perfect could be. I have never complained that she is slower to learn things, or that she is unable to walk, or that her speech is difficult for others to understand. I accept these things as part of her. And she accepts them because that is what we have taught her. However, as time goes on it becomes increasingly more difficult to teach her to accept things. I have taught her to accept being in the hospital and having needles poked in her. I have taught her to accept people staring at her in her wheelchair in public. I have taught her to accept that she needs the metal screws in her skull for the next 4-6 weeks to aid in the healing of her spine. I have told her that she should accept lying in the bed with a tube in her nose to help her breathe. And she has done all of this gracefully. Until yesterday, when she had reached her breaking point. And I feel as if she was entitled. She has laid in that PICU bed for 20 days. Who among you reading this would have made it that long? Not me. And how can I now ask this poor little sweet and innocent loving child to accept that they are now going to cut a hole in her neck and put in a tube that will be there for nearly 3 months only to then have another surgery to correct it? When she reached her breaking point I was right there with her. I don't know how much more fight I have in me. I have to find the strength to pull myself up and get her through this. I pray for that strength every day but it eludes me. I know that our future is out of my hands and in now is in God's hands. I just pray that he will give me the strength to continue fighting and the wisdom to guide Kalyn on her journey with the least amount of stress and confusion as possible. And I pray that he will make the universe give her a break when this is over----if anyone deserves a break it is her.

The long road to recovery

Many, many changes since my last post. It is difficult to keep this up to date with no internet access at the hospital. The day after my last post, Kalyn continued to have respiratory issues. An xray showed that her left lung was a complete white-out from collapsed small airways. It was suspected that there was a large mucus plug blocking the larger airway from feeding the smaller airways. The ICU MD tried multiple methods to open up her lung to no avail. On Friday they decided that a "therapeutic intubation" was indicated. This was very heartbreaking for me as my biggest fear was that she would end up on a ventilator. I knew that this would mean that she was sick. Little did I know that my worst fear would end up being her salvation.
ENT doctors came in and intubated her with a fiber optic scope through her nose and she immediately improved. She did not have that hunger for air in her facial expressions that had become constant. I was thankful that this was successful. On Saturday morning her blood counts had dropped and she required a blood transfusion. We were told that this was no big deal but it was not adequately explained to us and we were understandably frightened. This is when we reached the height of frustration with the lack of communication in the ICU.
While we have had wonderful caregivers while in the PICU, communication has been an issue. We are constantly at the bedside and are very involved in Kalyn's care and I think that this is not the norm for this unit. I think that they know how to take care of patients well but not how to include the parents quite as well. I am thankful to Karen who has been a saving grace for us. Her patience and understanding and willingness to take the time to explain and prepare us has allowed me to maintain my sanity. The transfusion went well and we are now all calm again.
We went home last night to take care of a few things and get a good night's sleep. When we came back we were surprised to find that Kalyn is signing to communicate. She uses some simple signs for yes and no which has made it much easier to accept the breathing tube. My sister Brittney said that she taught her some basic signs-I'm not sure that she has them right but it's working. This afternoon while we met with a patient advocate to discuss some of our concerns, Karen taught Kalyn to suction her own mouth. This is adorable. Kalyn hates having her mouth suctioned after her tube is suctioned but is now doing much better with it because she can participate actively--YAY Karen!!!
Slight fever this afternoon but sputum and urine cultures are all good so we are okay with this very low grade fever. Things are looking a little better. I say this with baited breath as every time I report good news we are dealt anther heart-wrenching blow. But for now the plan is to extubate her in the morning and go from there.
Keep us in your thoughts and prayers and know that we appreciate all of this. If I have not responded to a call or text I apologize. This is a very busy time (I fear my cell phone bill this month). Know that I have gotten every message and text and facebook post and truly been touched by them all.

Tough Times

I was so focused on getting through surgery that I don't think I really ever gave much thought to life in recovery. It is much worse that I could have ever expected. I am confident that as a family we can get through anything-including this difficult time. However, that does not make these times easy.

Kalyn came through surgery well. She had some really bad lung issues from disuse prior to surgery. Her right lung was plugged with mucus and she was not even using it prior to surgery. Her room air oxygen levels prior to surgery were 84-85%. With oxygen she came up to 91-92. Thankfully they were able to suction her out really well and inflate the lung during the 7 hours of surgery. This helped to expand those airways that had collapsed from her lack of deep breathing and being blocked by that mucus plug. She was oxygenating well throughout surgery. Everything was a success on her spine. Dr. Birknes was very pleased. As we were very pleased with him. I jokingly told him that he is on the Christmas card list this year. I am really ready to frame a picture of him and put it up in the family room. I feel like he took care of us as a family and I am more appreciative than I could ever express to him.

The post-op period however is very hard to deal with. I have had a very hard first day after surgery. Kalyn once again was not breathing very well and didn't seem to have the strength to cough. Thankfully, Jeff left work early and came to be with us. I had reached my breaking point. Her levels were down again and she was not coughing with very much force. She complained that her vest was hurting her tummy and we figured out that it was too tight for her to breathe in deeply. The vest was placed while she was lying down. Kalyn has very poor upper body tone-related to her Down Syndrome. It fit perfectly while lying. But when she sat up she did not have the strength to stay straight and it was constricting her as she slouched some. She did not sleep more than 2 hours last night and was also very tired today. Thanks to the great nurse today and the PICU MD and respiratory therapist who suctioned her out this morning and started a regimen of deep breathing and coughing. It appears to have worked. That along with the slight loosening of her vest by Dr. Birknes. She is now off of the oxygen and is keeping her levels around 93-94.

I am at home tonight writing this. I broke down today and had to leave to take a nap at my uncle's house while Kalyn rested. I have been having problems with anxiety when I leave her. My heart beats fast, I feel faint, and I feel like I can't get enough air. But, I am also exhausted. I haven't been sleeping well as I wake up with her every noise and my dreams are not pleasant when I do manage to nod off for a little while. Jeff has stayed with Kalyn tonight and I have come home for a short break. I took a hot bath and soaked in the tub while the jets relaxed my muscles. And now I am lying in my bed with Alexis. I will get her on the bus in the morning and then head back over to Norfolk. I miss my baby. But I am no good to her when I am so beaten down and weak.

Tomorrow we will start full force with rehabing our girl. She is very weak from disuse. She can barely lift her arm to her nose. So we will just have to do it for her and make her help more and more until she regains that strength. I just had no clue that she would be this weak. We let her rest and did some passive exercises today. Tomorrow the TV will be turned off and she will be more active. Mom is coming to help. Its time to get better.

Even with this strong resolve, I am frightened. I am frightened that I cannot provide the care that my daughter needs. She and I have always been a team. I push her and she pushes back. I don't know what to do when she doesn't fight with me. I have to find a way to get through to her. And also a way to maintain my mental resolve when I run into these stumbling blocks and obstacles to recovery. This will not be easy. I knew that. I just didn't realize that it would be so difficult. But I can do difficult-I have never had a problem with that.

Surgery is On

Surgery is on!! While the results of the traction were not perfect, surgery is still on at CHKD. Perfection is too much to hope for but we do have results that are good. Kalyn is having some issues with being in the hospital for so long and has had a few crying spells today. I think that she just has no idea of when she is going home and is getting frustrated. The only way that we have found to calm her down and assure her that she will go home is to promise that we will be home in time for Toy Story 3. This she understands. I have to cut this short as we are on a shift change and are eager to get back into the hospital. Special thank you to Uncle Frank and Aunt Cathy for all of their help in Norfolk. Also to Myrtis for her help with Alexis. Keep praying we are almost through this.

In the Hospital

I don’t have internet access at the hospital so I am saving all of my posts to my laptop and then cutting and pasting when I am somewhere that I have access. Today is actually Thursday at 1230 in the afternoon. Kalyn is sleeping. Thank God for small miracles. She was so irritable after surgery that I was thinking maybe Jeff was going to have to be here more than we originally planned. She just cried and whined really loud and refused to stop. Nothing that we did would pacify her. This went on for about 45 minutes before I finally put my foot down. I told her to stop the fussing and to tell me what was wrong. Little did I know that this would work. I guess that she just needed that reality check. I told her that if she wanted to cry because she hurt then that was fine but that she had to tell us so that we could give her medicine to make it stop. She tried to say that nothing hurt but we knew better. A little bit of morphine later and I had my baby girl back. Then she learned that she was not going home like she has in the past with outpatient procedures. This is when she started to acknowledge her pain. She told the nurse “10” when asked if she had pain. It was kind of cute.

They have done a great job of managing her pain. She had some Valium last night to relax her so that she could sleep. She was so tired and just could not sleep. The medicine helped----but she still woke up every hour or so and called out to me “Mom…come here.” I would come there and she would ask a trivial question or something simple. I think that she just wanted to make sure that I was still there. It is very difficult for her because she is in the HALO and in traction. This means that she can’t move her head to see who is there and has so much less control of her life right now.

All of yesterday’s action and medication has apparently caught up with her today because she is sleeping like a rock. I have been able to get out periodically for a breather will all of her resting today. This is good because there is no place on earth as boring as a PICU room. Thank you for all of the positive thoughts and kind words that have been sent our way, they mean a lot and definitely put a smile on my face. I will continue to make notes and post them when I can. Thanks again.

Less than 24 hours to go and I can barely keep my eyes open. I always forget how much preparation goes into everything that I do in life-mostly because of my type A personality. But now the house is clean, our bags are packed, the fridge is stocked for Jeff, and my baby is ready.

We took the girls to see Shrek Ever After tonight for our last hoorah prior to surgery. It was very enjoyable to just relax and watch the kids have fun with absolutely no stress at all. I wonder sometimes if Kalyn truly understood what was about to happen if she would still be as relaxed as she is. And I tend to think the answer is yes. She is her mother's child. I try to control as much as possible in my life...however, I recognize that there are things beyond my control and I just have faith. Faith that we will always be taken care of. I may not always understand why things are happening the way that they are...but I always trust that there is always a reason and a plan.

I am mostly concerned at this point for my mother. She gets so upset. I called my Nanny tonight and asked her to keep in close touch with Mom for the next few days so that she will have someone to cry to. Mom can't help but cry. She has such a special connection with Kalyn and it really hurts her to see her down. I try to calm her down and make her see that everything will be all right. But it is all for naught. Until Mom actually sees that Kalyn is fine she will worry and be upset. It does break my heart to see my mother so sad and worried. Thankfully, Nanny will be coming down prior to the second surgery and staying with mom for a few days. I think that it is funny that I feel better knowing that my mommy will have her mommy. Guess that comfort from your mom never goes away.

I am also thankful for my mother's reactions to Kalyn's hardships. I think that it gives me something that I have some control over to focus on. And it makes me happy to see how much she loves Kalyn. She is her mawmaw's girl. I am also thankful for my Nanny and her love for all of us.

This entire situation has been very stressful-but it has also shown me how many people care about us and the amount of love that is possible in this world. So many people-some that I have never even met-have prayed for our family and sent well-wishes our way. It is overwhelming at times to see the number of people who care about my child. But then again, she seems to have an uncanny ability to endear herself to all that she meets. I think it is the pure honesty that she possesses. There is not an ounce of hatred or anger in that child. She truly is my little sugar and spice and everything nice.

Thank you all for continuing to think of us. I will do my best to update everyone on her progress. Keep praying-we appreciate every single prayer that we get.