Archives for the month of: August, 2016

IMG_9509We aren’t out of the woods yet – but we can see daylight.

Our visit to see the surgeon in Minnesota this past Thursday didn’t exactly go as we’d planned. The surgeon ended up being stuck in an operating room and not able to see us. Grace had a few x-rays and a test of her bladder while we were there. Two other doctors and a team of nurses all ended up weighing in on Grace’s care.

The good news is we can use the mitrofanoff. We are able to stick a catheter through a small hole in her belly button, have it travel through Grace’s appendix, into her bladder and pee comes out. It is wondrous. It will most definitely change our lives (Kevin’s, mine, Graham’s and Grace’s) and make it easier to care for her.

The not being out of the woods is a combination of a lot of air still in Grace’s abdomen, a slight urine reflux to her kidneys when her bladder is full, and a small pea sized polyp that has developed on her belly button. The surgeon called on Friday, apologized for missing us, and we hatched a plan for each of those things still lingering. We are adding a medication for five days to see if we can get rid of some of the excess air to make Grace more comfortable; this will give her bladder more time getting used to having to work again and then we will retest. Her kidneys are not at a significant risk – we can afford to wait. We will watch the polyp as there is a chance it will go away on its own. When we’d left on Thursday they said we’d see the surgeon in November. When she called me on Friday she said she’d arrange for us to see her in September.

We continue to watch for any distention, monitor Grace and note times she is uncomfortable, monitor her energy level, and watch for fevers. We are not out of the woods.

The surprise of the trip, which perhaps threw us more, was the instruction for us to cath Grace using the mitrofanoff for the next three weeks, every three hours…around the clock. They explained that in some ways its like a pierced ear and the body would try to close the hole; we have to remind it to stay open. We were sleep deprived from the past three weeks – what’s three weeks more right? We took it in stride I think when the nurse was in the room who gave us the news.   After she left we both just looked at each other and remarked that perhaps someone should have told us this part a long time ago. We thought we’d rest easier after having visited the surgeon, and it just wasn’t going to be the case. We have settled on cathing her at 11 pm, 2 am, and 5 am. Three days down, 18 more to go. Had we known in advance it wouldn’t have changed our mind on whether or not to do the surgery but we would have been prepared mentally that this would be a necessary step.

Grace overall has had good energy and continues to improve in her steadiness.

The ultimate test of her stamina will come on Monday when she starts 4th grade.   The first few weeks of school tend to really wear her out when she hasn’t had a small bowel blockage and major abdominal surgery the last month of summer vacation. We will be communicating a lot with her school team to be sure that we are all pushing her just the right amount. They too understand that we are not out of the woods yet. It will be strange to not be right with her as we have been most of the last month but we will let her go because we can see some daylight.

Joy

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IMG_3615The four of us are together. We are working to enact Graham’s “when Gracie is home plan”. Tonight that means watching the Odd Squad movie as a family.

It feels like she’s home just in time. This morning on the way to school Graham told me that he didn’t want there to be any more switching and no more visiting Grace. Kevin and I are beyond tired and need to be able to sleep for a whole night. Whether we were with Grace at the hospital or with Graham at home both of us have had a hard time sleeping. The world is moving on and we have to hustle to get caught back up. The van needs to be serviced, the new parts to grow Grace’s wheelchair are in, her new braces and shoes have arrived, registration for dance is coming up, Graham is moving to the pre-K room at daycare and Grace is starting 4th grade. Plus we need to get back to work full-time.

Grace isn’t 100%. She is going to need extra help and extra encouragement to get back her strength and stamina. We need to take her back to Minnesota to see the surgeon who is anxious to “lay eyes on her”. Our pediatrician wants to see her the week after that. We’ll be watching her closely to make sure she maintains weight, gains strength, and shows no further signs of blockage. Plus we have to learn how to use the Mitrofanoff.

There are also still things to process from our experience the last few weeks. People to thank. This has been draining but we have to keep going.

One of the first things we did when we got home was take off all of our hospital bracelets. We have been wearing the bracelets for 14 days. It was a constant itchy plastic reminder and symbol that Grace was in the hospital. She even scratched her face with hers. Early on when Graham asked me what it was for I told him that it showed the hospital that I was Grace’s mommy. He asked me to take it off a few days after that so that I could be his mommy again too.     They are all off now. We belong to each other – no bracelet necessary.

Joy

IMG_3602Grace took her normal feedings and water intake today without any issue, which means she is on track to be discharged tomorrow! The only thing we have left is to draw blood for some lab tests. While they need to check general levels we also need to test her levels on her anticonvulsants since she was off of them for a whole week to ensure she is back within her normal range.

Graham’s letter of the day for show and tell was X; Child Life had some old X-ray films for kids to play doctor with and I was going to see if I could borrow one but I forgot before going home last night. So this morning I went online to find an image. Graham thought it was really cool to have an X-ray; I guess that that was you get for spending three and a half weeks in and out of hospitals. Graham saw this penguin one that he really liked so we went with that.

Kevin


When Grace first got her helmet I cried. I cried a lot. I was so sad and even angry about it.

Today when I was at work Kevin sent me a picture of Grace wearing her helmet – and I actually wanted to cry because I was so happy to see her wearing it.She hasn’t worn it hardly at all in the last 3 weeks. It hasn’t been necessary. Just lying in bed didn’t leave her vulnerable to injuring her head from a seizure. Plenty of pillows kept her safe. The helmet just sat in the corner of whatever room we were in.  

Today Grace donned helmet, glasses, socks, braces, and shoes and went for a couple of walks with Kevin. Kevin said that she was impressive in her getting around – especially after being laid up for so long. I have been so worried about all the strength and skills we’ve been losing that it was a relief to hear Kevin’s report on their walks.

Since I’ve been here she’s been a bit grouchy. Touchy. We have snuggled some, played some, I’ve rubbed her back, we took silly pictures of the two of us (I made silly faces anyhow), and I have just at times been quiet but sat beside her as she rested.

She’s met all the goals they put in front of her today. Tomorrow we move to doing everything on our home schedule. I’m nervous and excited and terrified all at the same time.

Soon hopefully they will bring her meds and we will be able to get her to sleep for the night. Tomorrow is a big day. It’s the last step of the plan before we get to take her home.

Joy

IMG_9359Last week Child Life sat with Graham and while using a special doll with a port they helped explain Grace’s port surgery. Graham was able to push medicine (water) in through the port and then drawn back blood (it turned red). He’s talked about it a few times since then but the best part was that someone was focused on him explaining something about his sister.

Child Life stopped by yesterday with a Chemo Duck (ports are used frequently with chemotherapy) which is a stuffed duck in scrubs with a port, it’s not as fancy as the one Child Life used with him but it has two places the port can be attached. I took it home last night and he loved it and named it Duck; he even took it to bed with the port attached. He asked if Grace got one too and I said that the duck was just for him. He thought that was pretty cool and said that he would share his duck with Grace. Sure enough, this morning he had his duck with him on the way to daycare and he left it with me to take to Grace for the day. Tonight when Joy picked him up he was ready to have his duck back so they had to make the trek back to the hospital to pick it up!

Grace continues to make progress she has been tolerating her normal feeding volumes spread out over two hours. On Wednesday we shorten the time frame to one hour. As long as the plan stays on schedule she should be discharged on Friday. We had an x-ray last night which confirmed no further occlusions or blockages.

Joy discovered today that Grace was 44oz of daily free water short after IV nutrition (TPN) was stopped yesterday. The TPN provided her with needed nutrition but also accounted for her hydration needs. Unfortunately, there was not good communication between the dietician and the general peds resident.  Thankfully the managing doctor and resident from the PICU are keeping an eye on Grace. Joy got the PICU resident working on a plan, and she was happy to do so. Hydration is essential to all of us but for Grace a lack of fluids can lead to constipation which we desperately need to avoid right now.

Grace got out a bit more from the room on some wheelchair rides, she continues to look more and more alert and active each day.

Kevin