Thursday November 8, 2007
So far, so good. No further signs of infection or high fever and no cultures have grown out from the labs drawn this week. Maddie continues to get stronger as she redefines, "critical care." I guess she is still critical from a respiratory standpoint, but she looks less like a recovering heart patient and more like a healthy kid on a stroll at the mall these days. Can you guess which of these is ICU and which is not?
If you guessed that they are all ICU, you are correct. Actually, these are pretty tame compared to what she's been doing this past week. Walking is part of her daily PT and though she complains (to put it mildly) she can now make it about 100 feet. She also has play time PT on an exercise mat several times a week, where she practices sitting up, kneeling, reaching, etc . . .
Madeline appears to be infection free, but will continue her antibiotic regimen through next week. As long as she keeps her temperature below 39 degrees C, her PICC line will be pulled as soon as the last dose is administered. If she spikes a fever between now and then, the ten day regimen will start over at day one. Pray for no fever. She continues to carry the fungal infection, so we expect to take her home on an oral anti-fungal for a couple of months.
In order to step down from the ICU she needs to be weaned off of the CPAP/BiPAP machine. She as only been using it at nighttime and nap time to give her right lung a little break. During the day she breathes room air with no assistance, just like the rest of us, and her vitals are okay. Yesterday's x-ray film showed a bit of improvement from the previous one, which is fantastic news. Remember we were only hoping that it would not get worse since the chest tube was removed. This is an extra bonus! Praises for answered prayers and continued prayer for steadfast improvement to her right lung.
Finally, Maddie's g-tube site continues to be an issue. It leaks. It irritates. It is feeding her gut rather than her stomach. It is not the tube we expect to take her home with. It has a lot of problems. The trouble is, everyone has an opinion about how to deal with it, but it is hard to find two people who agree on a course of action. Frankly, I don't think anyone has a clue about how to proceed. It is likely that Cindy & I will be guiding this one. We have discussed everything from feeding her through the existing tube, bypassing her stomach until the site heals to removing the tube altogether and placing an NG (nasal-gastro) tube, to having a whole new tube placed surgically. Please pray for God to keep us united in our decision and to lead us to the best choice.
Saturday November 10, 2007
"Though you have made me see troubles, many and bitter, you will restore my life again . . ." Psalm 71:20
Yes, we really do believe that maybe, just maybe, we are drawing to an end of this chapter. Today was a nice day of kicking back, reading stories, watching videos and going for walks. We continue to show each new nurse we have places in this hospital that they never knew existed. There are very few places that we haven't traversed and having them with us with "the badge" gets us into all kinds of places that we can't go without. Tonight we will be trialing Mad's without the CPAP (breathing machine) and we'll see how she does. It's hard for my brain to fully grasp that we might actually be home by Thanksgiving but I think it just might happen. How appropriate that would be don't you think?
I am still hoping that we'll be able to get some answers to all of her retching and vomiting before we leave here but it certainly won't be something that we allow to keep us here. Please pray that the right person comes along to help us get to the bottom of it all. It's all very strange since she's not even being fed into her stomach - very strange indeed.
On another note, I don't think we ever updated you all with the whole "Make A Wish" thing, but we did meet with Maddie's wish grantors and all is good to go. Their names are Ken and Kristen and both were just so fun to meet. They came bearing gifts and of course Mad's liked that! It is so exciting to even think that at the end of all of this Madeline will have something so amazing to look forward to. So just as soon as she is more stable we'll begin to dig into it further. Really, I do think she wants to go to Disney world!
Monday November 12, 2007
Madeline has had her share of ups and downs, forward leaps and backwards falls. She has been all over this hospital and sampled just about everything they have to offer. Cindy and I were recounting her stay and figured she has moved into a different room seven times. She has certainly logged a good many days in intensive care, but I am happy to report that she is spending this 112th night out of the ICU and back in the regular ward! I wish I could sing praises right now, but as the old adage goes, "Parting is such sweet sorrow." We are thrilled that Maddie is one step closer to home. We truly are. But we are endeared to the ICU staff. We shared the full battery of emotions with them through two of the most intense months of our lives. They wrestled our daughter away from death and handed her back to us whole. Suddenly tonight the transfer order came and just like that, that chapter was closed. I know it's a common story, but that does not make saying goodbye any easier. I feel like we've been dropped off at the bus station and are just waiting for a ride home now. It's not comfortable, but it's really not supposed to be. I guess that's why home is so appealing. - wish we could take everyone with us. I will post a more clinical update tomorrow, but for now - Graeme.
Tuesday November 13, 2007
Last night went pretty much as expected, bells ringing, alarms sounding, regular interruptions and little sleep for yours truly. This is what hospital life is like when you have to share your nurse with three other patients. How easily the grumbling and griping returns to me! In point of fact, the floor is a halfway house to getting home, so Cindy & I both expected to take on most of Maddie's care and we are happy to do it.
Here is her latest clinical update:
The feeding tube issue has not yet been resolved, but Maddie's diet was changed from formula to an electrolyte solution to see if there is any correlation between the formula and the night-time retching.
BiPAP seems to be in her rearview mirror and her X-ray films continues to improve, but she is still using a nasal cannula for minor oxygen supplement. I don't think she is expected to come home with oxygen, but we will probably have some sort of oxygen monitor.
Her last antibiotic will be administered this Saturday, and then her PICC line will come out. She will continue taking an oral anti-fungal for the next few weeks.
As we transition from the ICU to the floor please pray for our patience and for Maddie to get some rest.
Wednesday November 14, 2007
Good job prayer people! Maddie had a fantastic night of sleep (figures it was Cindy's night). Apparently the retching problem is a function of the monogen formula, since she was on Pedialyte all night and never stirred once. Tonight she is on a 50/50 mix of monogen formula and Pedialyte, which sounds like a thoroughly disgusting beverage. Fortunately there are no taste buds in the intestines! This may eliminate the retching, but it is no solution, since she needs the monogen for nutrition. Ultimately, she needs to go back to a normal g-tube and feed her stomach. The GI team should weigh in tomorrow.
I have shared my personal discharge plan with just about everyone now and all have chuckled, but none have said it is out of the question. The plan is to discharge locally to the Ronald McDonald House on Monday, come back to the hospital on Wednesday for a check-up, treat the staff to dinner Wednesday night and bring Maddie home on Thanksgiving. I can find no flaw in this plan.
The transition to the floor has been smooth, primarily because Maddie has adapted well to her surroundings. You can really sense that she knows the end is in sight. We also have some new excellent doctors and nurses that have helped ease our fears and concerns. I know I keep gushing over the ICU staff, but I just cannot help it. If you guys are still tuning in, this sidebar is for you because we want to say how much we love you. It continues to blow me away how much you care. Many of you have come by to visit and say goodbye, and it impacts us deeply, even now. I shake your hand or give you a hug and smile and say, "See ya later," but after you go, I sit down on that green rubber couch and fall apart. I am transported back to that terrible plunge into ECMO and the long days of uncertainty that followed, and I am breathless. You carried us through that storm. I could never write enough to satisfy my urge to thank you, but please know that you have treated not only Madeline, but our whole family, and we are all a little better for having known you.
Friday November 16, 2007
I think the rumor we started about getting out of here next week has caught on, as more and more people come in confirming it.
The 50/50 monogen/pedialyte mix did not yield the best results last night. Poppa stayed the night with Maddie and she made sure to wake him up periodically with plenty of retching and ringing monitors. We have a new GI specialist on the team now who is really illuminating the GJ-tube issue. The first priority is to heal the area of Maddie's tummy where the tube goes in. It is really awful and leaky and needs some good healing time. I don't know how long it will take to shrink, but once it does we can go back to a smaller size tube like the one we brought her in on. I suspect that all of this will take a lot longer than the weekend, so it is likely that we will be taking her home with the GJ tube she currently has.
Her oxygen saturation is at 92% on 0.4 liters of oxygen, which is pretty good. I don't know what it would be if we shut it off completely. The last time I checked it dropped to 88% and I turned it back on. I'm not sure if she will go home with no oxygen support and just tolerate lower sats for awhile or if she will require oxygen all the time. My suspicion is the latter.
She has not had a fever all week, which means that the PICC line is coming out tomorrow. This will be the first time since we checked her in for surgery 116 days ago that she will have zero artificial lines in her body (except her feeding tube, which we brought her in with). She's been eye-balling a full size bathtub in the tub room just down the hall. As soon as that PICC line is pulled, she'll be headed for a proper bubble bath.
Saturday November 17, 2007
The PICC line came out today, as scheduled and yes, a bubble bath quickly followed. I wish I had pictures of it, because I'm sure it was just the cutest thing ever, but in all honesty I was at the McDonald house sawing logs, so I missed it myself.
The feeding issues continue to be discussed. Currently, we are attempting to feed Maddie directly to her stomach, rather than her jejunum (small intestine). If she tolerates this (and we have no reason to believe she won't) the most likely next step will be to pull the GJ tube and hope that the wound heals itself to a point where we can go back to using the smaller tube that she has always had in the past. In the meantime, she will have to have an NG (nasal-gastro) tube. You can probably deduce from the name that this is a feeding tube that enters her stomach via her nostril. We have managed to dodge this bullet in the past, but there may be no other alternatives. We have seen numerous kids happily skipping around with these, so hopefully she will adjust to it, and hopefully she will not need it for very long. Monday's discharge could be spoiled by this feeding issue. We'll see.
Monday November 19, 2007
Monday's discharge date was spoiled by the feeding issue (with no great shock or fanfare). We pulled the GJ tube on Sunday and placed a g-tube. The g-tube managed to make it through the night, but it leaked a bit, so we pulled that g-tube and replaced it with another g-tube that was supposed to be less leaky. A few hours later we pulled that tube because it leaked so badly that the area around the site was inflamed and Maddie was in agony from the oozing stomach acid. We dressed it up to contain the ooze, and place the NG tube down her nose. This was slightly traumatic for Madeline, as well as the four adults trying to hold her down. Later, we removed her bandages only to find two inches of the NG tube sticking out of her old leaking g-tube sight! - good thing we had not yet begun her feeds! Ultimately, we (now five adults) pushed the tube back into her stomach and plugged the hole with the same g-tube she woke up with this morning. It may leak a little, but it's better than having nothing in the hole. She will need a more permanent solution before we can take her home, Everyone agrees that the old site will have to be closed surgically. They would like to put her on the schedule early next week. We would like to have it done early tomorrow. If we don't get our wish, maybe we could still get a day pass for Thanksgiving.