Tag: special needs parenting

Mother’s Day

Patrick is feeling much, much better now. The infection has been well treated with the medicines he’s getting. He’s stable, happy, and playing. Doesn’t need monitors. Doesn’t need much attention at all, except giving his medications on time. There’s only one thing keeping us here. . .

Because this is the 2nd time in a very short time that Patrick’s had a yeast infection, they wanted to make good and sure that the bug is dead before they put a new line back in. Right now, Patrick has a good “deep line” in his leg. This means that it is in deep enough that they can draw labwork out of it and give better nutrition through it. However, it doesn’t go all the way to his heart, which means that it’s not as likely to get infected – but it’s also not really the safest for taking him home with. He’ll get a new central line on Tuesday and go home as soon as possible afterwards.

So, we spent Mother’s day in the hospital. It was a good day, though very quiet. We got to visit with both Brian’s mother and mine today. Patrick got to get all dressed up and go to church. (Best dressed patient in the hospital today, I’d bet.)

Being here has been a good opportunity for me to reflect on how grateful I am for the many different types of mothers who play a part in our lives. Mothering Patrick is not the kind of job I could do all by myself.

I’m grateful for a mother and mother-in-law who’ve been willing to step up and step in to learn how to provide Patrick’s medical care so that Brian and I can get the occasional night out or so that when I’m exhausted and at my wits end I have somewhere to turn. You may not know what a rare priviledge that is that you have given to us.

We are grateful for our mothers. You prepared us to be Patrick’s parents and you help us each day to do it. I don’t think it’s possible to count the number of prayers, meals, phone calls, visits, crazy projects, and more that you have offered for our little family.

I’m grateful for sisters and a sister-in-law who are also there to help lighten my load when I need it, to fill the fun aunt roles. They are helping to raise some spectacular children, Patrick’s cousins, and him as well.

I’m grateful this week for nurses and CNA’s who have taught me how to do this job, who’ve sat rocking Patrick in the dark so I can catch a few hours’ sleep, who listen when I need to cry or share in small, although sometimes icky, triumphs and who make my day every time we see them because of how much they love my child.

I’m grateful for Patrick’s birthmother. I have no doubt that she loves and is proud of Patrick. I am impressed by her strength. I’m grateful to his birth grandmothers who trusted in their children and loved Patrick. It’s not easy to support a son or daughter considering adoption when you know it means a grandchild will be far away. We are grateful for the love and trust and support they’ve shown in us. We also owe thanks to Patrick’s aunts who helped offer comfort when needed and still are lovingly watching over him. What a blessing it is that he was born into a family who loved him so much.

This mother’s day, thank you to all of you mothers who are there for us. You come in all shapes and sizes.. friends, neighbors, family, and more. I couldn’t do this without you.

Relieving pressure

With Patrick, there are certain chain reactions you can count on. An infection will make Patrick’s spleen go into defensive mode and hold all the platelets that pass through it, kind of like people who hear a natural disaster is coming and run to the store and buy up all the food so that they’ll be prepared in case of emergency.

When the spleen sequesters (or hoards) platelets, Patrick becomes anemic. Without platelets in the blood, there’s a lot more fluid floating around in Patrick’s veins. The veins become “leaky” and the extra fluid goes and sits in any space it can find in the body.

Eventually Patrick becomes a little marshmellow baby that feels like he’s made of concrete because of all the extra fluid he’s carrying.

Last night, we added an element to this problem. When Patrick had enough fluid in his body, it became too heavy for his lungs to be able to move oxygen well and the oxygen saturation in his body dropped.

We discovered this problem as I finally got him to bed around 10 p.m. His nurse came in and put him on oxygen and then called the doctors. This started a better chain reaction for Patrick.

The extra oxygen was enough to finally mellow him out enough to sleep. Although he just kept getting puffier and puffier and needed more and more oxygen, he finally felt well enough to sleep. His kind nurse came in and held him which allowed me to get some much needed sleep.

The doctors prescribed a diuretic called Lasix that helps make it easier to shed extra fluid from the body. With just a half dose, Patrick started to to look and feel better. By his late afternoon nap, he almost looked like himself and I didn’t think my arms were going to fall off from the effort of picking him up. Better yet, his oxygen saturation improved enough that this evening they dared take off the tube that holds the oxygen on.

The best part of this chain reaction is that as Patrick is getting to feel better.. the infection clearing now that the line is out – and an end to the fluid overload problem have made it so he can finally rest. He actually was able to take naps today at their regular times, and fell asleep right about 9 p.m… not too far different from the home routine.

I’m really happy with how today went.. We just need to  make it the next couple of days without a central line and without running out of places for peripheral IV’s.

Just wanted to share that good news. There’s probably more to blog about, but I’m going to take advantage of the change to actually get some sleep tonight without having to call in reinforcements.

What we do when we’re not in the hospital

I’m almost afraid I’ll jinx us by writing this post. Patrick finished his course of antibiotics and antifungals a week ago. So far, so good. We’ve been settling into life at home in this break that the super anti-infection medications have given us.

Patrick seems to be on a mission to make up for all of the time and opportunity his illness have caused him. So, I’m doing all I can to support him and help him to be successful in doing this. Last fall, he couldn’t roll over. Now he’s crawling, climbing stairs, and cruising along furniture. Because he’s in such a focused, productive period of development right now, we’ve called in the troops to help him to accomplish his goals.

He’s got 5 therapists right now, making for a total of about 10 therapy visits a month. We’re working on speech, motor skills, feeding, and more. It seems that every time we meet with one of these experts, Patrick learns some new and amazing skill from the visit. After a little bit of reinforcement at home, he’s doing things that had previously seemed impossible, or at least a long, long way off.

Of course, a more active, mobile, and as one physical therapist describes him “impulsive” Patrick requires much more supervision. He breaks a little connector piece in his IV tubing a minimum of 3 times a week. And a backpack on wheels is not capable of following him up the stairs. We have many more bumps and bruises than we used to have. Patrick’s a big braver sometimes than his skills can allow for and I don’t think it would be a normal day without him falling and bonking his head on something. But, as tired as I am from chasing all the time, I wouldn’t have it any other way.

Last week we made a change in his IV therapy. Once a day now, he gets a one hour “break” from his TPN. No tubes. No pumps. I just disconnect him, put up the baby gates, and let him go. He plays and plays and then we reconnect the IV’s and the combination of activity and change in blood sugar knock him out completely. The only problem with this plan is that he’s taken to napping as late as 7 p.m.

Being at home with an easier medication regimen (just 2 oral meds and two nutritional supplements given morning and night) has actually given us time to do other things like cooking or playing and working in the yard or  taking care of the amazing friends who’ve taken such good care of us. I’ve had time to really dive into plans for the upcoming benefit concert (which sound more and more amazing by the day!) One of these days, I’ll even catch up on the ironing. (This is a little bit thwarted by the fact that Patrick really likes to stand holding onto the ironing board.)

It’s so nice to go to bed at the end of the day exhausted from a day of work around the house and playing with my little boy. It’s been a treat to be at home with my family and friends nearby. Things are good right now and we feel very, very blessed. It can’t be this way forever. Until Patrick’s transplant, there will always be another hospitalization around the corner. But we are grateful for this little moment of peace.

An excellent Seattle trip

Patrick had his quarterly appointment at Seattle Children’s on Thursday. And it was a very good trip in every way.

Because Patrick’s morning med schedule is so complicated right now, I opted to fly out on Wednesday afternoon. Our flight left at about 2 p.m. As usual, it took some effort to get through security and I probably looked insane hauling Patrick, his duffel sized diaper bag, two suitcases, a carseat, and of course, him in his stroller around the airport. But we made the flight without incident. In fact, we landed early and had time to visit and exchange blogs with a very nice woman from the same flight while we waited for our ride.

We stayed with my friend Lindy, her husband Kelly, and her little girl, Lauren. Lauren is 4 months younger than Patrick. They have always gotten along really well and it was fun to let the two of them play. Most of the play consisted of stealing each other’s toys and pacifiers.. but they did spend some time dancing to YouTube videos and there was more than one hug exchanged.

Patrick and Lindy

Thursday were the appointments. It was kind of strange to actually be seen in clinic. This is the first time since Patrick’s evaluation a year ago that we’ve done this visit in clinic instead of inpatient.

They did the usual set of vitals: weight, length, blood pressure. As we finished, another little boy about Patrick’s size came in to be weighed. He had a Broviac line and TPN in a backpack, too. I think this is the first time that I’ve ever met another kid on home TPN. It was kind of strange for me to see.

Our first visit was with Patrick’s dietician. She walked in and her first words were, “This weight looks spectacular! I had to come see if it could be correct!” She remembered meeting a tiny, frail, jaundiced baby last year. To be met by a happy, chunky, energetic (almost to a fault) toddler was a surprise.

She looked at Patrick’s TPN, his labs, and his growth charts. We talked about his current diet and in the end, she said that she was nothing but pleased with what she was seeing. She even said that it’s time to back off a bit on his feeds so that we don’t make him overweight.

It’s been recommended recently by some doctors to try continuous feeds again so I asked her her opinion of it. She told me that it’s pretty common for kids with anatomy similar to Patrick’s to stop continuous feeds after this long. She said that focusing on oral feeding so that Patrick would have an easier time learning to eat after his transplant was her preferred goal.

She also explained that some kids who’ve had problems with hypoglycemia when tiny can outgrow the problem and tolerate breaks from TPN. She watched Patrick attempt a few head dives off the bench we were sitting on and said that she thought it might be good for him to have some untethered time. This is something I’ll discuss more in depth with Patrick’s GI and dietician here. We’ve always been a bit nervous, considering his history.

Looking at books in the waiting room

Next, Patrick’s transplant nurse came in and took copies of his labs and other medical history that I’d brought with me. Then Dr. Reyes, the transplant surgeon joined us.

Again, he was excited to see how much Patrick has grown. He asked me how well he was eating and pooping since his ostomy was taken down. I explained to him all the questions that had been raised last month about whether or not Patrick had an obstruction that needed to be fixed. Then I told him that some of the doctors wondered if he needed another surgery to try to correct the problem.

Dr. Reyes’ reaction was quite direct. He said “No. We’ll get him a transplant. That will fix the problem.” He didn’t think it was a good idea to mess with things when Patrick is otherwise stable and healthy… especially if that reduces the remaining pieces of intestine.

I asked how Patrick’s reaching 10 kilos in weight would affect his candidacy for a transplant. Dr. Reyes said that that was a really big deal for him. This size changes the rules a bit for what he needs in a donor. Before, we’d been told the donor needed to be the same size as him, preferably smaller. Now that he’s bigger, they can reduce the size of a larger donor, too. His donor could be up to 6 or even 8 years old. The result is that his chances of finding a match go up.

So I had to ask if they could estimate a wait time. The answer, for all who are wondering, is still no. Dr. Reyes was careful to explain to me that Patrick’s B positive blood type is a mixed blessing. It means that there will be fewer matches. However, it also means that there are fewer waiting children with his blood type, which means his priority is higher, even while he’s healthy. Dr. Reyes just kept saying “We’ll get this transplant done.”

Next we talked about liver health. Patrick’s biopsy in September showed some early scarring of his liver. However, doctors responded quickly with a low-lipid diet and for the past several months his bilirubin and liver enzymes and other measurable signs show that his liver is relatively healthy. The clarity of his eyes and skin are also proof of this fact.

I told Dr. Reyes that we’ve been worried that Patrick’s spleen reacts so severely to infection. He admitted that the scarring in the liver was probably contributing to problems with the spleen. Recurring infections don’t help either. However, he said that a large spleen wasn’t as much of a worry if the liver isn’t also large.

Transplants are scary in a patient with a failing liver because as the liver fails, the body stops clotting as well.  Dr. Reyes said he’s not worried about that at all with Patrick. He feels safe doing the surgery. Then he said that if you fix the problems with the intestines, the liver can heal, and the spleen will get better. And he told me again, “We’ll get him transplanted.”

I asked one last question. Should we be keeping our bags packed? The answer was a resounding “Yes”. I really need to wrap my mind around that and get things in order so we’ll be ready to go quickly. The regular trips to Seattle and to the hospital here keep me practiced in packing and packing quickly – but still, it would be good to feel in some way prepared.

The mood of Patrick’s appointments was almost celebratory. His good health, his weight gain, and just the fact that we made it to a clinic visit without being admitted were all worthy of celebration.

We’ll go back again in July.

Roughousing with Lindy

The rest of the trip was pretty laid back. Lindy, who was kind enough to drive us half an hour to the appointments and then wait two hours for them to be done, took us back to her house. Patrick and Lauren crashed early. I was amazed that Patrick put himself to sleep there on just the second night.

And then, after a pretty amazing feat of getting three babies (Lindy was babysitting a 4 month old that day) into the car and off to the airport on time to catch our flight home… including all of Patrick’s medical care.. was impressive. Not the smoothest, but we accomplished it.

We got home Friday afternoon exhausted. Patrick and I both went to bed early. We all slept in. And today has been spent mostly in recovering from a pretty intense week.

I can’t really complain, though. It may be exhausting to chase after a one-year-old who crawls around the house emptying drawers and making monster noises… especially when I am the only thing standing between him and many broken lines. But I wouldn’t want to trade having him happy and wiggly and full of life – and best yet, at home – for anything in the world.

Bath Time

There are some little things that I took for granted before Patrick. One of them is baths.

With a Broviac line, there is a 2 x 3 sterile dressing on Patrick’s chest that must be kept dry in order to keep it clean. Until Patrick started to have PICC lines I just plain didn’t put him in water. When he needed a bath, I’d give him a sponge bath. When Patrick got his PICC it was easy to keep his dressing dry because I could wrap his arm in waterproof things and make him hold it out of the water. But now that he has his Broviac line, giving baths is taking some more heroic measures.

There are two products that make this possible. One is a medical invention called “Aquaguard”. It’s a piece of plastic with waterproof but easy to remove adhesive around the edges. You cover the dressing with this and it keeps it dry. The second I buy at the grocery store: Glad Press & Seal wrap. This wrap can go around the connections in Patrick’s line and also can be stuck over his dressing directly to his chest. It crinkles a bit when he moves, but it keeps him dry.

Waterproofing Patrick’s chest sometimes is a bit of a battle. He’s not a fan of having crinkly plastic stuck to him and often takes it off right after I put it on. But once he’s in the water, it’s well worth the work. He loves to splash and play.

I’m not brave enough yet to use the big bathtub for Patrick’s baths. It seems like a rather big thing to keep sterile and keeping the tubes above the waterline is hard enough in a baby bath. Besides, Patrick loves the baby bathtub I put him in. He uses his feet to push back and make waves that splash over the sides of the tub. (Therefore, I put the baby bath inside the big bathtub to contain the mess).

The only part of the bath Patrick isn’t a fan of is washing his hair. This isn’t any kid’s favorite part, but for Patrick it’s especially tricky. He has a lot of hair so it MUST be washed, but I have to do it while keeping water off of his chest. Even with the waterproofing, too much water can still soak through to the dressing. So we have to take extra time and do this with as little water as possible.

As the picture below demonstrates, sometimes a bath is needed when I just can’t pull off all of the logistics.

Patrick gets diaper rash very quickly because his stool is so acidic. The other night, he was crying miserably because his bottom hurt so badly! It hurt too much for me to clean it with wipes, and leaving it uncleaned was only going to burn more. So, I grabbed the nearest hospital bucket I could find, put two inches of water in it, and set Patrick inside.

 

I consider this one of my most ingenious feats of mothering yet. It got the right part of Patrick bathed and happy while keeping his line well away from the water.. And he thought it was hilarious to get to sit in the little bucket on the changing table.

Sometimes raising a child with short gut syndrome requires some real creativity.

Home again

I just wanted to take a minute to let you all know that Patrick and I made it home safely Saturday evening. The flight was a bit late and very full, but overall the trip went very smoothly. Patrick and I even got the opportunity to ride home next to a very kind woman. She and her husband are considering adopting and I got to spend the whole flight talking up adoption, especially special needs adoption. Patrick liked her, too, and even spent some time playing and cuddling with her during the flight.

We’re all pretty tired. Patrick and I both still have pretty bad coughs. Fortunately, Brian’s healthy.. but has been struggling to make up for the time he took off at work. On top of that, they scheduled a power outage last night. He ended up spending the whole night working to get servers back online.

On a different, and happy note, Brian and I celebrated our 6th wedding anniversary yesterday. With all that we’ve been through this week, it was a pretty simple celebration. My parents took Patrick for a couple of hours and we went to dinner and our first movie in well over a year.

It’s funny how life changes change perspective. Our anniversary was very low-key, yet I found myself overflowingly grateful to have the kind of marriage that doesn’t need a lot of frills to be happy. I love my husband more today than the day I married him.

Festival of Trees

The Festival of Trees is a big Christmas tradition here in Utah. Groups and individuals decorate and donate trees, wreaths, crafts and more. They’re displayed to the public for a week, and available for sale. All proceeds from sales, admissions, and goodies sold are donated back to Primary Children’s Hospital to help families in need.

We took Patrick to the Festival tonight. He wasn’t so sure about the crowds and was only vaguely interested in the trees. He did really like the chains used to protect the trees and the excuse to ride with Daddy and pull Mommy’s hair. At the end of the evening, we took him to meet Santa, which was a pretty good 1st Santa experience. Patrick loved his beard and sleigh bells.

This year’s Festival was a bit bittersweet for Brian and myself. There were a couple of trees there honoring friends’ children who passed on this year. Those brought tears to our eyes. It meant all the more to know first-hand the tender moments that happen in a children’s hospital. Just one way that Patrick has changed our lives and hearts for the better.

Top 10 ways you’ll know that Patrick has had his transplant

It seems that our fundraising efforts have created some confusion about Patrick’s transplant. The fact that the Produce for Patrick stands coincided with Patrick’s intestinal reconnection surgery has led a lot of people to believe that transplant has already happened. As much as we wish that were true, Patrick is still waiting for his transplant.

I’m asked every few days how the transplant went. And when I explain that we’re still waiting, the response I almost always get is “Well, you’ll let us know when it does, right?”

So – for all who are afraid that they’ll miss word of Patrick’s transplant, here is a list of ways you’ll know it’s happened. (It’s also a little intro to what we expect life to be like after transplant.)

1) We’ll be in Washington. Patrick is having his transplant done at Seattle Children’s Hospital.

2) Brian will be alone when he’s at home. Patrick needs to live near Seattle Children’s for at least 6 months. I’ll be there with him.

3) Brian will achieve frequent flier status. The plan is for him to go back and forth between cities until Patrick and I can come home.

4) We’ll be germophobes. To prevent rejection, Patrick’s immune system will be suppressed. We won’t often take him into public places, and when we do, he’ll probably be wearing a mask. If you visit us, we’ll demand that you be healthy, and that you make sure to wash your hands… often.

5) Patrick will be allowed to eat. Not just a teaspoon of formula and one bite of solid food every 3 hours. He will need normal quantities of real food because…

6) Patrick won’t need TPN anymore. At first they’ll slowly decrease the number of hours that he has it. A goal before he comes home will be that he doesn’t need it at all anymore. He won’t have an IV anymore. It’s possible that for a while he’ll be fed through the tube in his stomach.. but eventually, even that will not be needed.

7) Patrick and I rack up a different kind of frequent flier miles. For the first little while after coming home, Patrick will need to go back to Seattle Children’s much more often than he goes now. To make these trips while he’s on immunosuppressants, we will probably stop flying commercially and use smaller planes through a service like Angel Flight. Since small planes fly more slowly, the trip will take a day each way, not counting time in clinic.

8 ) We’ll have to start watching our budget even more closely than we do now. Right now, most of Patrick’s care falls under our insurance company’s catastrophe protection. However, immune suppressants are a pharmacy benefit, to which no out of pocket maximum applies. Co-pays for transplant medications average hundreds of dollars a month.

9) We’ll probably change a lot of what we do. Patrick’s care will require a whole new and different routine. Because his health will be at risk, we’ll have to be careful of where we go with him, as well as what we do around the house. (For example, gardening is a huge health risk for Patrick.)

10) WE’LL TELL YOU! I promise, when it comes time for Patrick’s transplant, we will be overflowing with excitement, fear, and anticipation. An intestinal transplant is MAJOR. You won’t be guessing if it’s happened. It will be all we can think about for a long time.

Now, the next question I’ve been getting is this. “If Patrick hasn’t had his transplant yet, why are you fundraising?” The answer is this… Patrick’s transplant is a VERY expensive one. It’s a newer form of transplant with higher rejection risk, and so follow-up care for this transplant is quite intesive. Furthermore, we have to travel to have the transplant done, which ups our cost exponentially, especially when you add in cost of living and travel on top of out-of-network medical bills and medication co-pays. Raising $70,000 can take some time, and we’re trying to be prepared and to help in the fundraising efforts while we are still in a position to do so.

There is, of course, the possibility that Patrick’s health could fail before he gets to transplant. This is one of the biggest reasons that we decided to work with COTA to do fundraising. Any money raised that Patrick doesn’t need will go to the transplant-related expenses of other children.

So there’s my educational spiel of the morning. Hope it helps to answer some of the questions you may have.

A Sick Day at Home

Patrick stayed home sick in bed on Monday. This would be pretty boring news for another kid, but for Patrick, this is only his 2nd ever sick day at home.

When I put him to bed Sunday night, his temperature was in the 99’s. If his temperature reaches 100.4 degrees farenheit, that is considered a fever and requires quick action. With a central line, a small fever could be a life-threatening blood infection that can turn deadly in the matter of just a few hours. If a fever reaches 101, we go straight to the hospital and say there at least 2 days.

Monday morning, Patrick’s temperature was still high, but sat just on the brink of a fever. So instead of running to the doctor, I put him in my bed with his IV pole connected, in addition to the TPN in his backpack, so that I could give him fluids to keep him from getting dehydrated.

He didn’t feel well, so he just layed there and napped and looked at books and watched Baby Einsteins. Meanwhile, I got on the phone with Patrick’s medical team. I talked to the nurses in the GI clinic to get blood cultures ordered, and then his home nurse to arrange for her to come to give them. I called his dietician to let her know that his stomach was upset and I was having to pour extra fluids into him. (This can make a difference in his electrolyte balance, which can be life-threatening.) And then I talked to his doctor, who was at home sick with the flu, but more than willing to work with me to make sure he stayed safe at home, or could go quickly to the hospital if needed. Then a conversation with his homecare pharmacist to arrange for a dose of antibiotics and some extra fluid to be delivered, and a call to the pharmacy at Primary Children’s Hospital to get some oral antibiotics too, for his belly.

I played nurse all day long. I spent a lot of the day in bed with Patrick to keep him comforted, and to watch for signs that he might take a turn for the worse. But he stayed grumpy, but stable. I also took his temperature at least every half hour.

Nursing duty spilled into the night. Brian and I took turns sleeping in Patrick’s room with him. He slept better that way, anyway, plus it meant that we could keep a closer eye on him.

And amazingly, by morning his fever was gone and he was starting to feel better. So far, nothing has grown from his blood cultures, so the gamble to keep him home seems to have been one work taking this time. In the peak of respiratory/flu season the last place you want to go if you don’t have to is the hospital. The chances of picking up a new bug and ending up back in the hospital are always there.

We’re still not sure why Patrick wasn’t feeling well. I wish sometimes he could talk. I know his stomach was upset, and that he seems to have increased problems with his motility. He’s also cutting teeth, which could have played a part in all of it.

Still, we’re happy to be home… To have been able to stay the day in bed at home, even if it did mean 2 days of hefty nursing duties and missed sleep for me. And we’re grateful for a motivated healthcare team who jumped right in to make sure that Patrick was able to stay safe and sound at home.

The good news that came out of this for Patrick was a decision that it might help to stimulate his motility to feed him. So he’s getting his little half teaspoon feeds again. Kind of the opposite of what you’d do for a healthy kid with an upset stomach. But that’s just Patrick’s life. He is THRILLED to be eating again and savors each bottle.