Kaitlyn is doing great!

We are so thankful that Kaitlyn has completely recovered from the virus that had us back and forth in the hospital for 2 weeks. It is so wonderful to see her smile and laugh and act normal. Every time we go to the hospital, we never know what is going to happen. I feel so blessed that she is healthy right now. 

(Happy Easter from two little funny bunnies!)

Kaitlyn has been on a hospice program, called Kids Path, where a nurse comes out and checks on Kaitlyn every week. They also have doctors who can come to the house and check her out too, which is great. I finally feel like we are getting more of the assistance that Kaitlyn needs. We are still working on getting all of the equipment for Kaitlyn. We have more than we did a month ago, which is wonderful. She has a seat that supports her body well and a memory foam mattress cover that we use on the floor, making playtime much more comfortable for her fragile body. It's all of the little things to make her more comfortable that make a huge difference in her quality of life. 

(They are so sweet together!)

At home, we are feeding her 3 times a day with the pump, which runs for about an hour at a time and then a continuous feed overnight. We also give her a bottle that is thickened before bedtime. She only drinks about an ounce or two of the bottle but it at least gives her a taste of something and helps her fall asleep. This seems to be working really well for her.

Again, I just feel so happy that she isn't sick anymore. We go to her Hematologist on Friday to check her levels. Hopefully everything will look good. 

So much better!

Kaitlyn is doing great! She hasn't needed any breathing treatments or medicine at all in the past 2 days. She isn't coughing or wheezing anymore and it almost seems like she is back to her normal self. I'm sure being at home and being around her brother has helped too. The first few days we kept them apart since Kaitlyn was still coughing and wheezing and we washed our hands every time we went from one baby to another. Let me tell you, that is not easy, especially when you are taking care of them both by yourself! Now since she isn't coughing or wheezing, she can play and interact with Cole. He is so happy that she is home. He really likes to "talk" to her. Chip and I are happy to be home too!

This is my attempt at keeping them separated.

 Sitting closer now that she's not coughing.

 A few things are different for Kaitlyn and us as a family now that we are back from the hospital. She is now getting hospice care, which is where nurses and doctors will come out to the house and check on Kaitlyn to see how she is doing. It is also coded differently with insurance and we have been told that her Pediasure, Thickener and medications would be covered at 100%. This would be such a blessing. They will also help with comfort measures for Kaitlyn at home. It is definitely hard to accept the reality of having Kaitlyn being on hospice but we are grateful for the services they provide. It will mean less doctor's visits and more personalized care.

They are just so sweet together.

I like to think he is kissing her hand but I'm sure he's sucking on it.

Not a posed picture. They do this a lot. I love it!

Almost back to "normal"

Kaitlyn has been doing really well since we've been back from the hospital. We are using less and less each day of the medicine, breathing treatments and suctioning. We are so thankful that she seems to be fighting this virus off. It has been a tough 2 weeks back and forth from the hospital but we are so happy that we are home now. Please continue to keep Kaitlyn in your prayers. She is still recovering and anything could happen. Thanks so much for all of your support!

Our new life at home

We got home from the hospital last night. It is so good to be back home! Kaitlyn is doing well, still not 100% better but she isn't wheezing or coughing as much as she was at the hospital, which is a very good sign that this virus should be completely on its way out soon.

Napping comfortably at home!

Kaitlyn's room now looks even more medical than it did before but we are really glad to have the new equipment. We were able to get a hospital grade nasal aspirator, an air to oxygen converter, and a portable oxygen tank. We are still waiting for the pulse/ox but that should arrive soon.

Having this equipment is really a sigh of relief for us. We know that it will help Kaitlyn significantly when she is sick and also help us to keep her out of the hospital.

Right now we are doing breathing treatments with a nebulizer (which we already had from when Kaitlyn had RSV when she was younger), chest PT (which is where you pat on her chest and back where the lungs are with a soft rubber circle thing to loosen up the congestion), and suctioning her nose with the powered nasal aspirator. It seems to be making a big difference.

Don't be jealous of my Einstein hair.

Kaitlyn also decided that she was going to drink some bottle today! She hasn't drank from her bottle in over a week and a half since she got sick so this tells me that she's starting to get her appetite back and feel better. We are very lucky to have the G-tube otherwise she would have been severely dehydrated cause she wouldn't eat from her bottle at all. She never had to have an IV put in at the hospital since we could just give her the nutrients she needed through the tube. I was very thankful for the G-tube otherwise it would have been a completely different story.

Please don't get me sick!

We are also trying to keep Cole from getting sick, which is a BIG challenge! I can't tell you how many times I wash or sanitize my hands during the day and night. Everytime I go from Kaitlyn to Cole, I have to wash my hands. They have their own designated toys and since Kaitlyn has been coughing off and on, I don't want them next to each other at all. Luckily my mom is in town to help out while Chip is at work. I really can't wait for this virus to be completely gone, I am exhausted!

Might be going home!

Look at that smile! Kaitlyn is still really congested and wheezing but she did great last night off of oxygen. She only dipped below normal oxygen concentration levels for a few seconds and then went back up. She didn't need any oxygen!

All of her cultures have come back negative for any bacterial infections so we are discontinuing the antibiotics. We still haven't gotten the results from the viral test but that won't change anything.

We will hopefully be going home with a suction machine for deep suctioning of her nose, which will be SO great for her. We are also trying to get a pulse/ox monitor and oxygen for her when she needs it.

As you can tell from the picture, she is pretty much back to her normal self, just congested. We are really hoping to go home today. That would be so wonderful. We miss our little Cole-bug!

Watching the numbers go up and down

Today Kaitlyn is about the same as she was yesterday. We got her G-tube fixed so it's not leaking anymore! She still has a lot of congestion and wheezing even with breathing treatments and suctioning. She was put on oxygen overnight because her oxygen concentrations were dipping in the 80s. Every time it drops below 92, the monitor alarms. So all night I was up and down checking on her until about 2 am when we started the oxygen. Right now she is off of oxygen but the true test will be tonight when she is in a deep sleep to see if it goes down again. 

Her chest x-ray was read again this morning and the pediatric radiologist said that it was negative for pneumonia. Her blood culture came back negative and we are still waiting on the viral swab and the urine culture to come back.  They are keeping her on antibiotics until the other test results get back. We should have the viral test results anytime now. This will tell us if she is still fighting off the parainfluenza 3 or if it is a different virus. 

The only reason that we are still here is because of her oxygen concentrations being low. Once her oxygen levels are up without assistance, we will be able to go home. So far she is doing well but again, it will be tonight that is the real test.

Having fun with MacKenzie

Kaitlyn has been smiling a lot more today and has been taking good naps so I feel like she is at least getting good rest here. The staff at Levine is great too and has been really great to us. MacKenzie, a Child Life Specialist, in particular is hilarious and wonderful at her job of entertaining the patients and makes not only Kaitlyn laugh but Chip and I too. It really makes a difference when you are stressed and worried the majority of the day to have a good laugh. Here is a video of some of her antics.

Back to the hospital we go...

First off, Kaitlyn is doing okay, all things considered. We took her to the pediatrician this morning and her oxygen concentration was low and she definitely had congestion in her chest and some wheezing. Her pediatrician had us admitted to the hospital around lunch time today. We are on the same floor at the hospital as we were last week so many of the nurses already knew Kaitlyn and even had her formula, pump bags and thickener in the room before we got there! It was very nice but also hard knowing that Kaitlyn has become a regular at the hospital.

Once we got settled, they did a chest x-ray, blood culture (to see if there is any bacteria in her bloodstream), a urine culture and a viral swab to test for viruses. The chest x-ray came up "negative" for pneumonia but there is one area in one of her lower lobes of her lungs that they are a little concerned about. They are going to have the pediatric radiologist look at it more closely in the morning. They started her on an antibiotic just in case she has an infection. They did the viral swab to see if she still have parainfluenza 3 or if she caught something else.

Right now, Kaitlyn is sleeping well. They are coming in every 4 hours to give her breathing treatments but they won't have to wake her up for them, which is good.

To add more complexity to everything else that's going on, her G-tube decided to start failing! Inside her stomach is a little balloon that holds the G-tube in place. Stomach acid can eventually pop the balloon or the balloon can shrink and cause leaking. We've seen leaking before but this time stomach contents were flowing out around the G-tube site anytime she tightened her belly. At least we were in the hospital when it happened, although they haven't fixed the problem yet. We have been feeding her at a slower rate with her pump so that her belly doesn't get too full and spills contents out. The surgery folks will hopefully just put her button in tomorrow morning.

We appreciate all of the prayers that you have all been saying for Kaitlyn. It really means a lot to us and we can't thank you enough. We definitely need them right now. The reality of this disease hits hard when we are in the hospital with Kaitlyn.

Getting worse

Kaitlyn's congestion has gotten a lot worse since we got home. We took her to the pediatrician on Friday and started giving her breathing treatments every 4 hours and Benadryl and Motrin. For normal kids, you would want to loosen up the congestion with a vaporizer and Mucinex but we can't do that with Kaitlyn. Since she has difficulty swallowing and aspirates, if we tried to loosen the congestion up, it would go right into her lungs making the problem worse. So we have to dry her out as much as possible to try to get rid of it.

Right now things don't look so good. Her cough is worse and if you put your hand on her chest you can feel rumbling. I am going to call the Pulmonary clinic at the hospital to see if they can see her as soon as possible tomorrow. I have a feeling they will want to do a repeat chest xray and possibly want her to stay at the hospital, depending on what the xray shows and what her oxygen concentration is.

Hopefully we can knock this thing out before it gets worse! Please keep Kaitlyn in your prayers. She really needs them right now.

We are home!

Kaitlyn was discharged from the hospital last night. She still has some nasal congestion but overall she is doing well. We are so glad to be back home! Thank you for all of the well wishes and prayers!

Still at the hospital

Well, we are still at the hospital. Yesterday, Kaitlyn was doing really well but overnight she developed some nasal congestion. In a normal child this wouldn't really be a problem but with a child that has NPD, the lungs are a weak point and if the congestion moves into her chest, it could be a big problem for her. So far her fever is gone and her counts have maintained their levels, which are low but they haven't gotten any worse. The doctor wants to keep an eye on her congestion. The main concern is that if it does move into her chest, she could develop viral pneumonia or a secondary infection. So far it's just nasal congestion but they are keeping a close eye on it. She seems to want to nap more today so hopefully the rest will help her heal. Thanks for the continued prayers for our sweet girl.    

Doing Better

Kaitlyn is doing much better than she was yesterday. Her spirits are getting better and her fever is gone (with the help of Motrin and Tylenol). Her counts are still the same which is fairly good. At least they aren't getting worse which was our main concern. She is tolerating her feeds but we are trying to get her some extra hydration today with Pedialyte. She is completely off of the monitors, which makes holding her a lot easier and I'm sure way more comfortable for Kaitlyn.

If she continues to do well, we may be able to go home and then follow up with her hematologist to have her counts checked to make sure she is still getting better.

Parainfluenza 3

We just found out that Kaitlyn has parainfluenza 3 (PIV-3), a common cold virus. Here is a link to the World Health Organization on parainfluenza 3:  
About Parainfluenza 3

In the hospital

Yesterday morning as we were getting ready to start the day, I noticed that Kaitlyn looked pale and her fingernails were a little purple. I felt her forehead and she felt warm so we took her temperature. It was about 101 so we gave her some motrin. As the day went on, her fever got worse, almost to 104, and she started trying to vomit. I say "trying to vomit" because she has a nissen and technically can't vomit (a nissen is where they wrap the top of the stomach around the esophagus so that if the stomach contracts, like with vomiting or reflux, it won't go up into her airway for her to aspirate). So we immediately opened her G-Tube to let any stomach contents come out but she kept on heaving even when her stomach was empty.

With her disease, her ability to fight off viruses and infections is weakened. Her platelet counts tend to drop pretty quickly so we took her to the ER at Levine Children's Hospital to have her checked out. She stopped heaving but still had a fever. They drew blood to check her counts, collected urine and did a chest x-ray in the ER. Her platelet count was 81, normal for her is in the 100s. Her white blood cell count was 1.8. Low for a normal person is 5, so she was really low and they decided to admit her to the hospital overnight. The chest x-ray was streaky, common with a virus, but nothing too concerning.

 









                 (Sleeping in the ER)

We got settled into her room and she was doing a bit better. With more motrin, her fever went down some and she was really tired. By this point it was WAY past her and my bedtime. Around 2:30am, they came in to draw more blood and ultrasound her spleen and liver. There were a few spots on her belly that seemed rock hard so we wanted to have it checked out with the ultrasound. Everything was fine on the ultrasound. Her blood tests came back not so good. Her platelets had dropped from 81 to 60, which we expected based on her condition and past experience with her and viruses. They don't really consider transfusion until they are in the 20s. Her white blood count was still low at 1.9 and her hemaglobin was 8, which is low and of concern.

So it looks like we will be here for at least a few days. They will continue to monitor her blood and we are waiting for more test results to come back (blood culture for bacteria in the blood and her viral swab for known viruses).

Unfortunately this is the reality of this disease. Anytime she gets a virus, she will more than likely end up in the hospital. Our dilemma is do we hide our child under a rock so she doesn't get sick or expose her to others so she has a social life but have many hospital stays? Trying to find the balance isn't easy.