Excerpts from McDonald five blog

MANOR, Texas - Here are excerpts from Emily McDonald's blog about her children and their medical issues. The blog is no longer publically accessed.

May 28, 2009; 9:22 p.m.

The last few days have been frustrating. It's one thing to spend 8mos in the NICU after your child's born but it's 10x worse having to revert back to that lifestyle after having your child home for 2.5yrs. I have certain expectations of the doctors caring for [my daughter], mainly that I'm consulted or at least informed before changes are made. I've felt very out of the loop this week with the discussions taking place about the broviac, possible discharge in the future and her over all care. My gut instinct when I come in and hear that X has been changed without the doctors talking to me, is to invoke my veto power and say, "no, I won't let it happen". Obviously this doesn't sit well with them and so everyone ends up irritated.

Today I got to talk with the doctor and nurse practitioner and I think we're all on the same page. I haven't disagreed with anything they've done necessarily, it's just the lack of communication that is going to drive me insane. [my daughter's] looking great. She spent a good 45min walking laps around the unit this morning. But in spite of how she looks it seems the general consensus is that she should stay here for the remainder of her antibiotic treatment (2-4wks longer). My understanding is that ID is the one pushing for her to stay since she's "too complicated" and "unpredictable" to be at home. Dissapointed doesn't even begin to describe how I felt hearing that. I feel a little mislead in some ways because never has anyone mentioned having us stay for the duration of treatment. Admittedly people have also not said anything specifically about sending us home but it's been implied. If they want us to stay then that's what we need to do but it's a hard pill for me to swallow when [my daughter] asks on a regular basis to go home.

I'm hopeful that communication will be improved from here on out, even if it's just a quick 2min conversation telling me what's going to happen that day. Yesterday's renal ultrasound showed her kidneys a bit better. Her labwork today looked pretty good as well. All signs that point towards her infection being well controlled. Monday she has another doppler to look at her clot. The attending doesn't seem too hopeful that it will have changed for the better but I'm still praying it's at least a bit smaller.

Day 50, 2:23 p.m.

Everything went great with [my daughter's] surgery. The Broviac is in, the IJ is out and they did a bandaidectomy while they were in the OR. She's yet to notice that anything is missing from her arms and legs and I'm not about to point it out. Everyone in the recovery room was happy to see her back and looking so great. We were back in our room within 2hrs of leaving and she was ready to get on the floor as soon as we got back. I'm so thrilled to have this done and behind us so we can focus on what needs to be done to get her home.

Kindergarten Party! 12:25 p.m.

This morning [my other daughter] had her end of the year party at school. I managed to hit the party for a short while before coming back to the hospital to talk to the surgeon and anesthesiologist and sign consent forms. [My other daughter] has had a great year. She's such a sweet little girl and I get nothing but compliments about her from the teachers and other parents.

With me staying at the hospital I haven't been able to spend as much time with the other kids as I would like. [My son] doesn't do so well up here in a teeny tiny room with nothing to do but [my other daughter] on the other hand is a bit more mature and can handle it. She spent the night with me last Friday and we got to have some fun together. We went to Starbucks for breakfast and sat and visited together. She was a bit upset that I refused to buy her coffee but apparently they have good apple juice. It's hard to believe that she's already done with Kindergarten.

Tomorrow, 7:22 p.m.

[My daughter's] having her surgery tomorrow at noon to place her Broviac! In no way does that mean we're headed out the door but it does make discharge possible at some point in the future.

This week has been very calm (which is good). [My daughter's] doing a lot of hard work with her therapists and spending the rest of her time sleeping and playing.

Her labs from this morning looked much improved over Sunday's labs. Tomorrow she's due to have another abdominal ultrasound (hoping they'll do this before waking her up from surgery). They noticed some abnormal changes in her kidneys on last week's abdominal ultrasound but hopefully everything's back to normal tomorrow.

May 26, 11:26 p.m.

Obviously I'm not driving much these days. My car is a fairly permanent fixture in the parking lot at the front of the hospital. We're saving quite a bit of money on gas to put a positive spin on being in the hospital for almost 50 days (yep, midnight will be day 49 with no end in sight). Back to my story. I haven't driven the car since Saturday when I took [my other daughter] back home after spending the previous night with me here at the hospital. I completely, unintentionally left an unopened can of Dr. Pepper (my addiction) in the front seat of my car....

Tonight I hopped in my car to drive to the Thai restaurant next to the hospital (yes, I could have walked but am lazy). Let's just say the temperature here right now is probably very close to 100 degrees in my car during the day. Does anyone want to guess what happens when a Dr. Pepper can is left in that type of heat all day for three days? Not a pretty thing to see. I have a lot of cleaning up to do in my car. Such a sticky mess. Let this be your lesson, never leave an unopened can of any type of carbonated beverage in your car during the summer.

Boring is good, 3:24 p.m.

This morning when I got up to the hospital the CA was cleaning up from giving [my daughter] a sponge bath and she'd already dressed [my daughter] and put bows in her hair. [My daughter] was all smiles. Apparently the CA had been in her room most of the morning and she didn't seem to mind one bit.

[My daughter] had a great night. She's officially on full feeds! All that means is she's getting all of the calories she needs through her g-tube and is not being supplimented by any IV nutrition. She's still getting fluids through her IV 24/7 but just to keep the line open given her problems with clotting. It's been almost 3mos since she was at this point with her feeds and honestly she's tolerating them the best she ever has since around a year old when all of her GI issues started.

There has been a lot of talk today about [my daughter's] line placement/surgery and when/if that needs to be done. There are so many different opinion it would take far to long to summarize everything. At the very least [my daughter] has another 2wks of treatment left, possibly 4wks and if the clot doesn't go away then there's still the concern that even once antibiotics are finished she'll simply go right back to being septic. I know that they've contacted our surgeon and I'm guessing he'll come by tomorrow to give his input on the situation. I'm pretty set in my opinion and they all know where I stand so hopefully we'll have a date and time soon for when this is going to take place. Her cultures have not grown anything in almost 48hrs so she's technically healthy enough for the placement as early as tomorrow. I just want to get it done and get out of here.

May 25, Postponed, 7:38 p.m.

The wife of one of my father-in-laws co-workers made [my daughter] (and [my other children]) this beautiful quilt. When she's feeling well it's been perfect to spread out on the floor and sit on. Right now she's laying on it with her pillow, trying to go to sleep.

Today's been a surprisingly good day. Based on her CBC last night everyone thought she'd be sick as a dog today but she's acting pretty good. Her rash looks a ton better and her hematoma doesn't seem to be growing anymore. She's had a good amount of energy and no fevers since last night. She's even been off of her oxygen for short periods of time (yes, that was the difference in the previous pictures).

I've waited all day to post because we've been waiting on the ID doctor to come by and make the definitive call on whether [my daughter] can have her line placed tomorrow. She came around a short while ago and we'll be waiting until Thursday for the surgery so that we have a good 48hrs of no fevers or growth on her blood cultures. The rash she has is identical to the reaction she had to her Zosyn last week. They were able to switch the Zosyn out for Ciprofloxacin and the rash went away. Unfortunately there's no substitute for Amphotericin so now we're pretreating with Benadryl before giving the Amphotericin to lessen the reaction. She definitely looks better this evening then she did yesterday and the timing works out quite nicely for the Benadryl to help put her to sleep for her afternoon nap.

May 24, Bad news, 10:30 p.m.

[My daughter] continues to be tachy (have a high heart rate and respiratory rate) regardless of having a fever. Her rash is still very apparent. She's also developed a walnut sized hematoma in her thigh from where her catheter was placed last week.

The attending ordered labs to look at her clotting factors and times along with a CBC and blood cultures. Her clotting factors were actually on the very low end of the therapeutic range but her clotting time was a little long. She continues to be a bit odd in that she's clotting inside of her vessels and yet she's bleeding on the outside, as is evidenced by the hematoma. For now they're holding her Lovenox and the hematologist will be by in the morning to decide where we go from here.

Her WBC have doubled since yesterday morning and her neutrophils are sky high. For those who have no idea what that means, it's referred to as a "left shift" meaning she has a very obvious bacterial infection brewing. We may know as early as tomorrow about cultures but often times it takes 24hrs before we hear anything about growth.

Once more, 5:58 p.m.

When [my daughter] woke up from her nap we noticed she had a rash all over her body. The senior resident has been in and out all afternoon. It looks like a reaction to one of her medications, the last one she got was Amphotericin which finished about an hour before the rash appeared. She just looks puny, feels nasty and isn't herself. They gave her benadryl for the rash but it doesn't seem to have done anything. At 4pm her temperature was still normal but just now it was 101.3. [My husband's] here to take me out to dinner so don't expect any updates in the next few hours.

Prayers, 3:47 p.m.

I'm sure it's totally nothing but I'm a little on edge none the less. [My daughter] has had a great day. She had her chest CT this morning. The doctors rounded, commenting again on how good she looks. Her vitals have been growing abnormal throughout the day though. Her heartrate's about 40-50bpm above normal (without albuterol), she's having regular desats into the 80s with her nasal cannula on and her respirations are double what they normally are. She didn't have a temp at noon when they last took vitals and she doesn't feel like she has one now but they'll be around shortly for 4pm vitals. Please pray she's just having a bad day and not getting sick again.

May 23, Huge strides, 10:57 p.m.

[My daughter] seems to have forgotten how to make her cute little smile. Today she was trying so hard and making all kinds of funny faces but never managed to get her little squinty eyed smile. She sure is a doll! I should also just put it out there that because of the Lovenox (blood thinner) she's bruising VERY easily and any place that gets bumped or poked has turned all shades of purple. Her poor head... About 2wks ago her little fish aquarium fell over onto her head and made this teeny tiny bump, she didn't even cry. Then they started the Lovenox, followed by the tPA and the bruise that had virtually gone away has come back and seems to look larger and uglier every day.

In order for [my daughter] to have her surgery on Tuesday she has to have an abdominal ultrasound and another chest CT. Today we got her abdominal ultrasound out of the way and tomorrow should be her chest CT. The surgeons have been contacted and should come by tomorrow to talk with me. This is now the third time (or maybe fourth, I've lost count) that the doctors have put in a request to have them place a line and everytime they've either said "no way" or they've agreed and right before hand she's become septic again and the surgery has been cancelled. I am obviously a little reserved about showing excitement due to the past experiences.

Today was a huge move for [my daughter]. They went ahead and discontinued her TPN today! She's still getting a Dextrose solution with electrolytes added to it to suppliment her formula but she's on 35cc/hr and doing great with her feeds. Everyone is so happy and I haven't seen her belly looking this good in ages. I can't even remember the last time I changed a dirty diaper! Her lipids have actually been gone for about five days now because her triglyceride levels have been far too high for her to receive lipids. They are continuing to monitor her triglycerides daily but they're staying consistantly over 200 and need to be down below 170ish.

May 22, Thank you!, 10:22 p.m.

I continue to be blown away by the support from people here locally and those I've never met. On an almost daily basis [my daughter] has gotten packages from people near and far. Her little face lights up whenever she opens them up. [My daughter] loves to sign "giraffe" and she got a beautiful stuffed giraffe from [her friends] that has a permanent place in her crib. Thank you guys! She also has a very special attachment to Elmo and we've watched the same Elmo movies over and over and over again so the new Sesame Street movie was a very welcome change. I think it's quickly becoming one of her favorites too [friend]. I thank you just as much as she does. Emily, the pictures below are of [my daughter] decorating her arms and legs with the entire box of bandaids you gave her. It provided much entertainment for everyone. Thank you to everyone who has sent cards. We have them all displayed in her room and she looks at them on a regular basis. I cannot say thank you enough to the group of ladies I was in Bible study with over the fall and spring. You have been so encouraging and uplifting to me throughout the last year and I feel very priviledged to have met every one of you. And of course to all of the people who have stopped by with lunch, to pray over [my daughter] or just to say "hi", thank you. We feel blessed beyond words.

I am so worried that I've left someone out. Please know that I appreciate each one of you more than I can express!

No news is good news, 8:37 p.m.

Things are continuing to go really well. [My daughter] got the boot from PICU last night and is now snoozing away in IMC. The PICU doctors are still following her and I secretly hope they don't turn her over to the regular pediatricians. I'm so sick of everything constantly changing and I'd like some consistency for the next little while.

The last couple of days OT and PT have come by to work with her and today we got her out of bed to try walking. It's going to take some practice but I'm sure she'll be back to running around before we know it. For now she can't stand or walk on her own.

Right now the tentative plan (pending that all goes well) is to place her Broviac on Tuesday. Hopefully we'll be out of there a couple of weeks after placement.