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.

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.

Crunch Time

We had our pre-op appointment yesterday(Thursday). Talk about stressful... nothing like sitting with a neurosurgeon and discussing the risks of a surgery at the most intricate portion of the spinal cord and stem of the brain. Needless to say that discussion has left me with some nervous feelings. Although I trust that everything will work out for the best, these are still scary things to have to hear. We are now 4 days away from the initial surgery. We can expect that surgery to last for 2-3 hours and the second surgery will be around 5-7 hours.

They will be taking bone from her hip to use with the fusion in her neck. We can expect minimal pain from the first surgery. However, the second surgery (on the 8th) comes with more pain. Luckily, they will not have to cut through any muscle. But, they will be cutting between them and holding the two muscles in retractors for many hours. This will cause more of a spasm like pain. To deal with this pain, Kalyn will be on IV Valium for relaxation of the muscles. They are hoping to find a dose that will achieve this goal without sedating her too much.

We also toured the PICU at our appointment. This caused more anxiety than the risk discussion. We are not allowed to sleep with her in the PICU but can visit at anytime as long as we aren't sleeping. This is horrible because hospitals always make me sleepy and I can't imagine leaving her alone. There are bunk beds in the lobby sleep rooms but my Uncle lives about a mile away and has offered his spare room. No visitors after 8 pm except for parents and Alexis has to have scheduled visits of about an hour at a time.

I think that we will probably stay in Norfolk on the weekends as a family and switch off of who is at the hospital to allow both children to get their mom and dad time in. Keep us in your prayers and know that we appreciate it. We love all of you.

Surgery is scheduled

Excuse me if this is not quite as eloquent as prior posts-but I am dog tired. We just finished a family photo shoot and dinner before coming home to finish laundry and bathe the kids. I am so ready for bed. But tonight I lay my head down with a smile on my face knowing that my husband is sleeping next to me. Finally, Jeff is home again and our family is back together to face the road ahead together. We have the strength to deal with anything when we tackle it together. I love my husband and I am more appreciative now that ever for the sense of sanity that he brings to me with just his mere presence. And Kalyn is much happier too. She didn't really understand why Daddy wasn't coming home and she could sense that something big is going on. It would be hard not to notice that you are seeing a few new doctors each week and having multiple tests. She knows something is on the horizon. We are trying our best to prepare as well as we can. She has a limited ability to grasp the journey that is in store for her. We are working to break it down into small feats to aid her in understanding. She knows that she is going to stay in the hospital for a while and is all right with this. She also knows that she will be wearing a funny hat for a while and doesn't seem to be really thrilled with this. But with time and continued explanations she grows more and more accepting of all that we attempt to share with her.

She is now being taken off of her rheumatiod arthritis medicines one at a time in preparation for surgery. Yep, we are now close enough to begin preparing and in fact we have a date. June 2nd we will report to CHKD at 1030 am for the first surgery. During this surgery they will implant the halo and extract her primary teeth. Then she will go to the PICU for 6 days in traction. Only 2 days is needed to prepare her spine. However, 5-6 days are needed for the cysts in her gums to drain completely of the infection. She cannot have the surgery until this infection is resolved. June 8th she is scheduled for the posterior cervical fusion. Then, back to the PICU for around a week before we are released home. She will be in the halo when she comes home.

Dr. Birknes called me to discuss everything and schedule a final meeting as well as a meeting with anesthesia. During this call we discussed halo vs. collar. He told me that because of all of Kalyn's medical problems she is at an increased risk for instability of the fusion. He said, "Kristi, I would hate to look back in 3 months and say Man if we had just done this one extra measure would this look just a little better." He wants her to get the best results possible. I am of this same school of thought and agree with his reasoning. I have placed my complete trust in this person and he is aware of this. I think I scared him in our initial consultation when I took his hand in mine and looked him in the eyes and said, "I have researched you online, you went to the best schools and have some very impressive awards. But I need for you to know that I am putting my child's life in your hands and trusting you. Please take care of my baby." He was taken aback a little. He looked at me wide eyed and said, "Thank you, I will take care of her." I think that this made this a little more special to him by impressing upon him that this is more that just another patient. This child is special.

I have always known that Kalyn is special, as does anyone who has ever come in contact with her. I wanted him to know too. And by the end of our meeting she had him wrapped around her little finger too. Her eyes just smile right down into your soul and make you happy just to be around her. You know what I mean-you have all seen her too. And if it wasn't true would you be reading this?

So here we go...pray for us as we hold on tight and begin this whirlwind ride-we are going to need all of the help we can get!

Minor Setbacks

Wow...little did I know that after I finished that last post I would be on my way to the ER with Kalyn. The GI bug kicked her tail. Poor baby would not rehydrate no matter how much saline they pumped in her. She was transferred from Mary Immaculate to CHKD for hydration. Thank you so much to my friends and co-workers at MIH for taking care of my baby girl. Especially to Dr. Hutchison...I'll bet you thought I never cried until that day. (Even tough girls have soft spots- mine is my kids) We were lucky that she did improve greatly overnight and was able to go home on Friday. So grateful to God for getting my baby girl through that.

Totally stunk that I had to catch her virus and spend all day Saturday in bed with Alexis taking care of all of us. That child has abilities that you would not believe. We spent mother's day recuperating together and went to UVA to meet with Dr. Shaffrey on Monday.

He was a very intelligent and kind man. He basically told us that Dr. Birknes is very capable of handling this surgery and that CHKD is the best place for Kalyn to have surgery because of all of the pediatric specialists that are available at that facility. (She already sees quite a few and they are very familiar with her) He also said that should any problems arise at CHKD then he would be happy to have her transferred to UVA so that he could care for her. He also suggested that she might not need the halo after surgery. As long as her bones fused well during the procedure she may be able to just wear a collar. He wanted to make us aware that this procedure will cause her to lose about 50% of the mobility in her neck. We look at this as glass half full news considering that we were expecting complete loss of mobility following surgery.

All in all it was a very positive meeting and we left with even more confidence in Dr. Birknes. This was enough to make the 6 hours worth of driving worth it. Dr. Birknes' office is attempting to schedule surgery now. We are looking to the first week of June around the 2nd but do not have a definite date yet. They are having to coordinate the schedules of 5 different MDs for the surgery. So this is a bit of a task. Bur we have faith.

Keep us in your thoughts and prayers while we continue on our journey. Thank you for all of your continued support that love.

Progress Begins

Met with the new dentist on Monday May 3rd who says that his part of the surgery is simple and will take about 10 minutes. Maybe that should be 9 minutes now-seeing as Kalyn lost one of the 10 teeth he was supposed to remove late last night. I innocently asked the girls how much they thought the tooth fairy gave for silver teeth. Alexis said "I think it's 100 dollars." I don't think so...it feels so good to laugh with the kids in spite of all that is going on. Anytime I am overwhelmed by what is going on, I just take 10-15 minutes to talk with the kids and they will make me happy and put everything into perspective. Kids have the right perspective...I wonder at what point in life we lose that?

I had to pick Kalyn up from school today because she was sick. She puked in the car on the way home...fun times. After a dose of Zofran for nausea and some Tylenol/Codeine elixir for the pain with the new molar coming in she is sleeping soundly on the couch. She is so pitiful when she is sick. She was very pale when we got home...Kalyn tends to get dehydrated very easily when she vomits. But her color looks a little better now that she is resting. I pray that she wakes up she is feeling much better.

Tomorrow we are scheduled for allergy testing at CHKD-let me clarify that- 4 hours worth of allergy testing at CHKD. They are trying to rule out a suspected Penicillin allergy so that when she has surgery she will be able to have a wider array of antibiotics to prevent any infection from setting in. Then Monday we are off to UVA to meet with Dr. Shaffrey for our second opinion consultation.

I had Kalyn's hair cut into a pixie on Tuesday to cut down on the shock of having it shaved for surgery and the halo. It will also make it easier to keep clean while she is in the halo after surgery. But this also made everything feel more real. Like "this is really happening". At this point I think we are ready to just get it done and start taking care of her and helping her get healed. Dr. Birknes is eager to get surgery done also and is attempting to schedule surgery as I type this post. We are looking at the first week in June for our first procedure. Tentatively June 2nd to implant the halo and complete dental surgery. That is 27 days away. Wow...just saying it makes it feel so much more real.

One concern that has arisen is that she will have to come off of her rheumatoid arthritis medicines for 2-3 weeks prior to surgery and 3-6 months after surgery. Kalyn has never fared well without the medicines and has a lot of pain when she her arthritis is flaring. Hopefully, her doctors will be able to find a way to keep the arthritis at bay without compromising wound and bone healing. I put my trust in them and pray that they can rise to the occasion. I don't really have any other choice. But all of you know me and you know how I am. I will be paying attention...and I don't have a problem letting anyone know how I feel or what I feel they need to do (especially when my kids are involved). So here we go... I know that time will start to fly now that we are looking at a date...guess we just have to hold on tight and pray as hard as we can. I know we will make it through.

More Consultations

First of all, thanks to everyone for your support and prayers again. The outpouring of love and understanding has been remarkable.

Kalyn is doing great. you would never guess that anything is wrong!! We go on Monday May 3rd for a consultation with a 3rd dentist. This one is Neal Morrison. He is in Norfolk and will be hopefully be able to perform the dental surgery while Kalyn is under anesthesia having the halo implanted. This is great news because it means one less time under anesthesia and no delays in the neuro procedure.

We also have an appointment with Dr. Shaffrey at UVA on May 10th. They were very helpful with fitting us in so soon. But I must admit that I do not look forward to the drive. Jeff and I are thankful that UVA makes great neurosurgeons--even if they don't make great football players ;). May 7th we go to CHKD for allergy testing to make sure that Kalyn is not allergic to penicillins. This will allow for a greater spectrum of antibiotics that are very effective to be used following the dental procedure. Cross your fingers that the results are in our favor.

For now it is just a waiting game. A very busy waiting game-but a waiting game all the same. 13 more days until Jeff comes home from San Diego. Not a day too soon. Keep us in your prayers and we will continue to thank God for blessing us with such wonderful and supportive friends and families.

MRI Update

MRI was yesterday...Kalyn has been such a chronic patient that the hospital is like a second home for her. But yesterday was different. For the first time, I saw fear in her eyes when they were taking her for the MRI. That was when I realized that Jeff and I should take more time to better prepare her for what is to come. Kalyn has a hard time grasping everything because of her mental delays but normally we can explain things in a way that she will understand. Or at least partly understand. I had done that prior to the MRI-but I think that she has finally reached an age where she needs more of an explanation that we as parents are used to giving her.

Rest assured that I took the time to explain everything yesterday so that her fear would be dissolved. And she did very well. She was wheeled into the MRI room with her chin high and the bravest little expression on her face. God bless that child for getting all of us through this!

Recovery was quicker that usual as she was only given gas to sedate her. But this also made her more coherent. Which led to fear. She asked me to hold her in the PACU. When I picked up all 74 pounds of that child she wrapped her arms around my neck tighter than she ever has and buried her face in my neck and squeezed. It nearly brought tears to my eyes. Thankfully she came around fully in about 20 minutes. All in all the day was a success.

I heard from Dr. Birknes today. He has spoken with Kalyn's dentist who agreed to do as much of her dental work as possible prior to surgery so that her infection risk is considerably reduced. The catch is that he has to keep her neck still. This means that he will not be able to finish the surgery and she will need more surgery later down the road once her spine is stable. Still, this is very good news.

He also spoke with a neurosurgeon at UVA who can do the alternate procedure should her spine not realign with traction. His name is Dr. Shaffrey, rest assured I will be researching him tonight. Dr. Birknes would like for us to meet with Dr. Shaffrey for a second opinion. He suggested that because of the fact that this is a high risk surgery then a second opinion is warranted. Also, this will allow us to feel more comfortable with the surgery because we will know the person who would complete the back-up plan should it become necessary. We should know by Monday when that appointment will be. All of these developments mean that the surgery will be after Jeff is scheduled to get home from San Diego. This is such a blessing and a relief for me--and for Jeff as well.

I will continue to update everyone. Thank you all for your continued support and prayers.

-Kristi

Kalyn's story

My life was blessed nearly 11 years ago when Kalyn came into it. She was everything a mother could ask for in a daughter. Kalyn has continued to light up my life and that of her father Jeff. She is our beautiful little girl and we are so thankful to have her in our lives.

Kalyn has faced many challenges and hurdles throughout her life beginning at birth. She was born with Down Syndrome and was in respiratory distress. Kalyn was in the NICU at Norfolk General for 2 weeks at birth but managed to come through. At the tender age of 21 months she had her first neurosurgery to correct her spinal stenosis by removing the back of her first and second vertebrae to relieve the pressure on her spinal cord. The surgery was a success and Kalyn was home within a week. At the age of 4, Kalyn began to have stiffness and swelling in her joints that was determined to be Juvenile Rheumatoid Arthritis. She has fought this disease with great valor-along with the help of her wonderful rheumatologist Dr. Gabriel. Kalyn has had ups and downs with her arthritis but has faced each and every day with a smile no matter what!

Kalyn was to have dental surgery this March. Prior to surgery she developed and infection that caused us to visit the dentist prior to surgery. It was by chance that they did the xrays in office (which were initially to be done during the surgery). These xrays showed an abnormality in her bone which prompted a CT scan prior to surgery. In the last few images of the scan of the face the radiologist noticed an abnormality on her spine. That was it-dental surgery was cancelled until a neurosurgeon could clear her.

When Kalyn's neurosurgeon reviewed the films he was very concerned and scheduled more scans of her neck. This led us to where we are today. Those scans showed that Kalyn has a complication seen in only a small percentage of sufferers of rheumatoid arthritis-loosening of the lateral ligaments in the cervical spine that leads to settling of the skull onto the spinal column. What this means is Kalyn's spine is going through itself and into her skull putting pressure on her brain stem. OUCH! We had never noticed the subtle symptoms-or attributed them to her other conditions. The only solution is a surgical repair that should be done soon.

We now have a MRI on next Tuesday, April 20. Within a week or two Kalyn will enter the hospital and be placed in a halo for 5-7 days in spinal traction. This is to pull her spine back down out of her brain stem. Then, if this is successful, they will fuse her cervical vertebrae to one another and also to her skull. Afterwards, Kalyn will be in a halo for a minimum of 3 months while her spine heals and calcifies. Kalyn smiles at everything that she goes through and even manages to interact with the doctors until they are chuckling with delight at her actions. She is so strong- I envy her.

We have a long road ahead of us. There is no doubt about that. But the outpouring of prayers and support from our friends and family has been wonderfully overwhelming. I am so thankful for everyone who has offered assistance or just prayers or even just a hug. We, as a family, will need all of the help we can get. Jeff is in San Diego on business until May 12th-unless surgery is before then. So we are facing this together via Skype and cell phones. (I can't wait for him to come home)

Let me not forget to mention that Kalyn has a soon-to-be 6 year old little sister named Alexis. They are the best of friends. Alexis is very helpful with her sister and attempts to protect her whenever she can. Tonight I sat Alexis down and explained what we were in store for. It is amazing at how accepting children are. She took the news very well and was very inquisitive about the halo device and how much hair Kalyn would have to have shaved. (amazing what kids focus on ) We are preparing as a family to face this challenge. And I am confident that we will come through with it having made us stronger both individually and as a family unit.

Thank you again to all of our friends and family and know that we appreciate all that you do. I hope that through this blog we will be able to not only keep all concerned about Kalyn informed but to also remember just how far we have come as well as all that we have both gained and overcome.

-Kristi